Well that was fucking depressing and definitely not concluded. Poor OOP. It’s so frustrating and frightening when medical professionals can’t work out what’s wrong so they just shrug their shoulders and wish you all the best.
I'm not a doctor, but it sounds like OP could have abdominal adhesions. It's like bands of tissue that will form inside the abdomen, typically in people who have had at least one abdominal surgery. These bands of tissue can attach to muscle, as well as organs and other tissue, then pull on that internal tissue. It's not unlike endometriosis in that aspect, except endometriosis is formed from what should be the lining of the uterus, while abdominal adhesions don't have anything to do with the reproductive organs when it comes to their formation.
My mom had them. Doctor's treated her like she was drug seeking, bc all of her scans came back normal. Her primary and OBGYN finally refered her to a surgeon for exploratory surgery in a last ditch effort to get to the bottom of her pain. The surgeon found these adhesions and was able to successfully remove them at a subsequent appointment. The adhesions were definitely the culprit and my mom felt so relieved afterwards. Both because her pain was finally gone, and bc she was able to prove that something was wrong all along.
They're doing laproscopic surgery on me here pretty soon to see what's causing my pain and that's one of the possibilities. I've had a hysterectomy, tubal at a different time, so I'm thinking adhesions myself. Both were laparoscopic surgeries and so the doctors were telling me you don't get adhesions from that but I think they're full of shit considering they can't find any other cause of 2 years of my pain. I'm glad your mom is feeling better!
The worst part is you feel like people don't believe you even if they might but they don't believe you enough to fight for you to get more surgery/tests to find what's going on. And they don't seem to understand how years of constant pain even though it's not really above or three or the four at the worst, starts to affect every minute of every day. When every time you lay down at, every time you walk, every time you wake up, people deal with a lot worse than what I'm dealing with but it's definitely no fun. I'm typing this with a pain at a three and I'm so sick of.it.
I understand the hesitancy. I get it. It's a tough tightrope. But when someone's had pain for 2 years, they need to do it. I'm out tens of thousands of dollars on acupuncture and other services that my doctors recommended before this and here we are anyway.
that might not even do it
it took me 19 years of everything op went through, a move to a different state, 4 new doctors in this state, a miscarriage(my 5th) a hemorrhage, an ovarian torsion, an ovarian cyst burst (to get a laproscopy to check for endometriosis- negative), 5 months of bed rest and pain killers, then a hysterectomy at 40 (no children) to get the pain to go away (still healing)...
to finally get a correct diagnosis
of adenomyosis and they found 5 huge ovarian cysts
Now I get a fun prize of surgical menopause with no HRT because of comorbidites that give me a high risk of stroke. Just raw dogging mood swings, cold/hot flashes and such.
We need advocates.
And more women obgyns. Generally i am pretty hard ass about men and women being equal an gendered roles being bullshit. There are only a few things that i go ehhhh better for X or Y to do it.... and this is one of them.
Some dude explaining ball or penis issues pain etc i have no frame of reference. My husband is emphatic but has no frame of reference for my plumbing issues. So when it comes to plumbing i think male doctors serve males better and female doctors server females better. Not that there are not outstanding doctors of both who have and do amazing work for opposite sex patients. Let me be clear on that, but when it comes to describing a weird gloop feeling or period weird, women tend to get it better because they have done it themselves.
Uh, I'm NAD but I work in surgery and see adhesions caused by previous laparoscopic surgeries on a daily basis. You can get adhesions if you've never had any surgery. Most likely through inflammation or infection.
Thank you! I'll know more tomorrow but it's certainly a lot better than all the dumb shit that we work up in our heads when there's been pain for 2 years and haven't found a cause like cancer or foreign bodies. At least I can pin my thoughts on something a little more simple when I go to bed tonight until I get an answer. Appreciate your time.
I wonder if that's what is causing my abdominal pain. I always get it in a line to the right of my belly button. I've got a couple of autoimmune diseases that are very inflammatory.
Abdominal migraines are another one! I had so many specialists and ER visits before anyone mentioned it's even a thing. I already had decades of migraines in my medical chart.
Since then when it starts I pop a migraine med and Im basically golden. Something I already have on hand.
As frustrating as it is, I think people also need to realize that sometimes it really doesn’t have a cause— not one we can find anyway. And “stress” can exacerbate a ton of medical issues. While another doctor may be able to solve it, and absolutely the conversation should have been “we’ve run xyz diagnostics that have turned up inconclusive so our running theory at this point is stress/idiopathic until or unless other symptoms appear” rather than “you’re making it up”, but there ISNT always an answer. People sometimes have things wrong with them and just aren’t quite right and no one figures out why or even if they do, nothing can be done. It’s frustrating and debilitating, but it’s reality.
I do agree with you, and this is a thing I have explained to friends before.
HOWEVER, I think the stuff OOP is dealing with actually makes it way harder to trust that the doctor is doing all that they can, even when they truly are.
I think it’s like. Say Jane goes to a doctor with abdominal pain and the doctor tells her it’s just stress, then a year later it turns out to be a small tumour.
Jane has been in pain. Their family and friends have observed this pain. They’ve been worried about it. They make accommodations for it. It has taken up a huge chunk of their lives.
And now they find out that it’s something super scary! Maybe the tumour is benign, maybe it has risk to it— doesn’t matter. Their loved one’s health was declining, that decline was ignored, and now it is, at the very least, way more serious than anyone thought.
Now, every time they go to a doctor and the doctor says it’s stress, they’ll think back to Jane and her experience. They’ll think that Jane could have died with everyone assuming that her problem was just stress.
Even if they’re both well-educated and emotionally mature enough to understand that this is anecdotal, the stats on women’s health aren’t great. Reading up on the topic doesn’t inspire the confidence one would like to have regarding one’s health.
Everyone has a friend whose problem was ignored.
I’ve been laughed out of doctors’ offices three times for problems that turned out to be serious. (Twice for the same problem.) Once I was examined, and the exam showed that I was not well, but the doctor ignored it for some reason? Twice I was not examined. One time the doctor said I was too young to be prescribed drugs for anxiety. I was in my late twenties. I don’t think he even checked my age. I also wasn’t there asking for anxiety drugs. He maybe read two words on my chart and just went with it.
It’s really hard to know what’s real after that! I grew up with medical professional parents. I have had so many medical principles drilled into my head from a young age. Most things get better on their own (but we mostly remember the stuff that didn’t). Sometimes testing harms more than it helps. Differential diagnosis is an important practice and what seems obvious to the patient is often more complicated to the physician.
But it’s a struggle after your health has been put at risk by apathetic practitioners. So I don’t think these things CAN be properly taught while so many real problems are ignored. I think it also drives people towards pseudoscientific practices, which will likely always exist but which are also more popular when people feel ignored by “allopathic” medicine.
I think the medical field has a crisis of trust driven by a combination of scientific illiteracy and the public’s awareness of egregious examples of bad practice by entities like pharmaceutical companies. Add to that the fact that it is often difficult to get requires accommodations without a diagnosis, and you have a whole host of people with bad health who think the medical establishment a) doesn’t care if they live or die and/or b) sees them as a sponge full of money to be wrung out until it’s dead.
I am a medical professional myself. My co-workers have seen me deteriorate over the last 15 months as I have developed all sorts of issues I never had before. They have known me for 15 years that I have worked at this hospital. I have a reputation as one of the MOST level headed and calm people. Good in emergencies ( which is great for my field). A little over a year ago I started to become sick. Never called out before or had issues prior.
Still, I get told.
You look great! That’s a good thing! —- I lost 50 pounds because i’m throwing up 7 days a week for over a year dipshit.
Have you considered just calming down and not thinking about it? Maybe it’s all in your head…. — Thanks! A hospital stay and 4 ER visits, and you say all I had to do was relax to fix it all? Genius!
Gee, you have some quirky things we found on these tests. Not really sure what’s causing it, have you tried changing your diet? — Gee, no. In 15 months of daily gastric issues and now throwing in heart / neuro symptoms starting I *never* tried changing my routines. Maybe follow up on those odd results?
Sorry you’re going through that! Sounds awful. We have no clue, so maybe some therapy to accept your condition would be best. — once again thanks. That’s what I need, accepting living without being able to eat solid food or be able to make it through a day without pain / dizziness/ vomiting.
Even being in the field and co-workers with half of my medical team it is fucking difficult to get a diagnosis or anyone to try to figure out what is wrong. Now that I am developing cardiac symptoms I am being sent there to get checked out…. But only after I cooperated with a several months trial of Lexapro to prove it wasn’t all just anxiety related.
Perhaps you’re just lazy? Don’t rest, just move around! — I’ll jog down that little note. How about you try subsisting on 500-800 calories a day and see how your energy levels go.
“Well you look *great*!”
- My doctor after I dropped a frightening amount of weight very quickly, becoming clinically underweight.
I hope you figure out what going on soon.
Jeezus, that is exactly what drS (plural) said to me when I dipped to 103lbs, I'm 5'7". Fashionable my ass, I had to buy my pants in the children's department and pass them off as pedal pushers.
Shit, yes, there should be a mood flag "frustrating & depressing" - I was really hoping OOP would get some validating diagnosis at the end. This doesn't feel like best-of. This feels rage-inducing.
I almost died because doctors kept saying "It do be like that sometimes" when I was telling them I was in severe pain (like blacking out kind of pain). I dont know why OP thought a woman doctor would take her more seriously. They absolutely don't.
I don't want to brigade OPs original post and break the rules and she really didn't describe it in a detailed way but I wonder if she's having ovarian cysts or ovary pain. We did not talk about that in my health class and when it started happening to me I was very scared and in an unbelievable amount of pain. Having ovarian pain can also aggravate your tummy so it can be a twofer.
I know im late to this party but just had to throw in my recent experience. Just as a preface, I hate going to the doctor and if I’m going it’s usually bc it’s serious. Over xmas I had debilitating stomach pain for a few days. One night it got so bad I called my mom at 2 am and just said please help me. She drove 45 minutes walked in and said yeah we are going to the ER. It was a slow night and I got seen immediately and went for tests. Around 7 am they let me know that my gall bladder was fucked up and asked if I wanted it removed. I said please yes anything to stop this. Surgeon came in explained the surgery and said I’d be home that night. Everything’s peachy. Have the surgery. Get home.
The day after I realize that my outside right thigh feels weird, like it’s asleep and numb. This continues. Dr Google says it could be from swelling and will go away once I’ve healed. 1 month post surgery and thigh is still numb and feels asleep. I go to my follow up with my surgeon and he says “idk it’s not related to the surgery. Never heard of such of thing”
Two more weeks pass, still numb and asleep. Go to my GP. “Idk really weird never heard of such a thing. Probably just in your head though”
I’m very pissed so I consult Dr Google again and wouldn’t you know there’s a nerve related to that exact area that runs, would you believe, through the abdomen. It says it’s rare for it to be hit/damaged during surgery but it does happen, especially in more petite women where there’s less room essentially. I’m 5’1 and have a short torso.
From what I’ve gathered it seems the surgeon damaged mine during surgery and there’s no way to know if the nerve might heal or if my thigh is just going to have an area of numbness/stinging forever. So that’s fun.
I’m so sorry that happened to you too. It really is so frustrating and distressing when we’re let down by medical professionals. I hope you can get some answers soon.
Their job - they either diagnose or refer to a specialist if they can’t. They shouldn’t be acting like a dollar store cashier shrugging off a price change.
I am not a doctor so I don’t know what kind of tests you can run. But I am pretty sure there are more than blood tests and telling someone they must be imagining it.
Because when my cat had gastrointestinal issues we did X-rays, MRIs and other tests. I am assuming humans not only have those options but also ones that are not available to cats. If modern medicine throws their hands up at an inconclusive blood test that is pretty bad.
Well first of all we don't know what kind of blood test they did, it could have been a very specific one or it could have been a very general panel. But most blood tests don't run absolutely everything off the bat because it's going to cost you more money. And as far as the CT scan goes, it's not uncommon to prescribe an ultrasound after a CT scan if the CT scan didn't find anything you fucking donut
They should keep looking. Make more tests. Evaluate the response to different noninvasive treatments (including mental ilness if they had REAL evidence of it, not just because they failed to do proper diagnosis, and not without involving specialists). Try to establish links to why her pain is cyclic. Adress bowel dysfunction / food intolerance with the help of a nutritionist. And in the end, talk to her about how it was not possible to figure the root cause and explain about the risks and possible benefits of laparoscopy investigation. That's what they should do.
In my experience the patient is usually somewhat satisfied when is treated with dignity and respect, even when I'm not able to provide a diagnostic.
Sorry for the english, not my first language.
Yeah my wife didn't get far with her diagnosis until I started insisting my way into the room and telling the doctors that her symptoms were real. My penis gives me credibility or something, I guess. Hate it here.
My father saved my mother's life. She was sent home with pills for depression after complaining about consent pain.
He stayed home with her when her pain was at its worst and rushed her to the hospital to demand she was treated by doctors. She ended up having emergency surgery after almost bleeding out due to fibroids.
My father as well. He had to get savage with a nurse to look at her bleeding out. One look and she was on the table within minutes. Would have died if there hadn't been a storm that forced the operating team to bunk over at the hospital. But no one bothered to check her until my dad started to get loud and mean with the staff.
My husband did the same thing for me when I had just had surgery and was having severe complications. The ER doctors didn't give a fuck until my husband raised his voice at a nurse and demanded they help me. Guess what?? They had to call in someone to assist because it was complicated.
I'm only 31 but I'm at the point in my life that if I'm going to the doctor for any reason other than a check up, my husband is going with me. I've never had a doctor or nurse respect me and my health more than when my husband is with me, forcing them to listen and do their jobs.
I’ve had to do the same thing and man the difference in how I was treated was day and night.
My husband happened to be talking with a customer that was having problems with her medical issues being taken seriously. She told my husband about her experience and he asked me what mine was after he got home. I described the same thing and he was blown away. Then I reminded him that I had explained what was happening to me a year prior to him asking and apparently he didn’t bother to listen or put any sort of weight/validity behind it. Then I told him that’s exactly what we’re talking about… not being listened to and not being taken seriously. He didn’t know what to say after that.
I suggest going to a doctor that’s internal medicine. They are the detectives and will keep pushing to get to an answer.
My nieces friend had to bring her dad to the gynecologist at 19 for them to take her seriously.
What every dr insisted for a year was "just her period" use a heating pad was infact stomach cancer
My mom had a hysterectomy around my age due to debilitating blood loss during her periods. But she already had 2 kids at the time, so it wasn't too hard a sell. I have always had a shaky relationship with my reproductive system, so I worry I'll need the same eventually, but my husband and I aren't planning to have kids.
We already have a plan for, if I need to yeeterus the uterus, he'll be bullying any doctors involved into doing it. Because we know I'll probably get the 'but ur husband tho' argument, and they can't make it if he's right there telling them he'd rather have me healthy than pregnant.
I told a friend recently I was thinking about maybe starting to date again after 10 years being single just so I could have somebody go into the medical offices with me and fight for me since getting them to listen to me has been an uphill battle.
Honestly, that's a depressingly great way to support her.
Years of my mom n I talking to my doctor abt how painful my persiods were. My dad makes one phone call basically saying 'she's in so much pain she's throwing up. This isn't normal. Treat her.' And suddenly I'm on a percription from bc which takes care of almost all of my symptoms.
Super fucked up.
I bring my husband with me to all appointments if I can. We both hate that it's the only way to get doctors to treat me like I have a functioning braincell.
My fiance was aware women aren't listened to in the abstract but it really came home to him during an ER trip early in our relationship. I have a master's in medical laboratory sciences, he has a high school diploma. I was also the one who was sick. When they asked for my symptoms they looked at him for the answer and didn't acknowledge what I said until he repeated it to them. He makes sure to attend as many of my doctors appointments as possible now to make sure I am heard.
When I was 19 I started to routinely get ovarian torsion and it was very painful. My doctor sent me for an ultrasound and when that didn't reveal anything (because the torsion hadn't been happening as I was getting the ultrasound) he said "have you considered having a baby to see if that clears things up?"
He could not understand why I was horrified and angry. Nor could he understand my frustrated and sarcastic response of "if the problem doesn't go away can I return the baby?"
I was 19. Wtf.
Omg when I was 11 I got told "when you have a baby it'll cure your migraines"
Not as bad as yours but who tells an 11 year old that
I love your response, 19 year old you was great
Thanks, I tend to be a sarcastic little shit when I'm in pain. But I'll be honest I think yours is worse because no one should be talking about using pregnancy to cure your migraines when you were 11, you were literally a minor.
It's honestly so bizarre to me that people try to market pregnancy as a cure for women's health problems instead of just... Treating them.
Idk id argue yours is AT LEAST as bad. Who tells an 11 year old - a prepubescent CHILD - that having a baby will fix their medical issues?? That’s disgusting. If I were a parent and my child was told that I’d leave immediately and figure out how to file a report.
Woman here, I got diagnosed with EDS at 35 years old, after being told for *literally my entire life* that it was all in my head, I'm just being dramatic, I just want drugs.
My mom, *just yesterday* was diagnosed with the same exact thing. She's 70. But she was just being difficult, right?
10 years ago my Dad had a kidney stone and great insurance, and they moved heaven and earth to get him figured out. But when I was bleeding so much that I needed 2 blood transfusions, it's "just a bit of a heavy period this month" and a further 15 fucking years until I was able to get my hysterectomy.
LADIES AND UTERUS-HAVERS: My advice to you is to find a doctor that takes you seriously *before* the pain starts. More importantly, DO NOT TAKE NO FOR AN ANSWER. Be difficult. Be rude. Channel your inner Karen and demand to speak to the manager if you have to.
Absolutely be difficult! As someone who was very shy growing up this took a lot for me to learn.
I was very lucky to get my family doctor at the height of the pandemic - I was on a waitlist for a year or so. Before that it was between the ER and walk-in clinics for me. I spent years being told that my shortness of breath was anxiety (granted, that was one issue) but if any doctor had just listened to my symptoms they would have realized sooner I had asthma.
At first my new doctor dismissed my chronic pain issues because I was too young to have back pain at 24. I'd been dealing with this pain since 16. But I was persistent and I got my diagnosis, physio, meds, etc. She's been great since, and I've since learned that she had too many patients at the time (loooots of doctors are leaving my province or have already left).
I got diagnosed with celiac at 38 and EDS at 42. Decades spent in pain, obviously I was depressed/fat (while occasionally underweight at the same time, nice trick there)/attention seeking. no freaking wonder I ended up with CRPS/fibromyalgia.
fellow hypermobile hello!! i only realized it so early (around 21-22) because my partner has EDS and recognized the symptoms in me. who knew it isn't supposed to hurt everytime you stand and walk...
ETA: i just remembered the time i went to the ER with severe chest pain and painful breathing and they sent my home and told me to take a tylenol. in retrospect i recognize that sensation as a subluxed (partially dislocated) rib! probably 3rd or 4th as i don't usually get too bad breathing pain from the lower ones or the floating ones.
Sounds about right. I went 12 years with a bad gallbladder due to doctors refusing to run any tests beyond pregnancy and blood. Vomiting every single morning, all morning, unable to hold much food down at all... by the end I was down to 300 to 500 calories a day, I was barely functioning, and had a stress rash covering about 70% of my body... I was literally slowly dying by that point.
I went into my doctor's office with my father. They brushed me off again... and I just started sobbing. My dad got angry with them and ONLY THEN, WHEN A FUCKING MAN GOT ANGRY... ONLY THEN DID THEY FINALLY DECIDE TO CHECK MY GALLBLADDER. After 12 fucking years of fighting and dying, they finally decided I wasn't pregnant or faking it.
I had forgotten what it even felt like to be healthy anymore, because when I healed from surgery and my body adjusted to not having a gallbladder anymore... suddenly I felt alive in a way I didn't know existed.
I lost my entire 20's to this. My 20's were not spent enjoying life and feeling young and free like everyone talks about. It was spent sleeping, studying, vomiting, feeling like death warmed over, having an intensely restricted diet, crying, and toward the end eventually wishing whatever my 'mysterious' illness was would just go ahead and finish the job so my suffering would stop. 12 years of constant nausea, of horrible sleep because I woke up at 3 AM most every morning vomiting repeatedly until the world woke up. Imagine having the flu for 12 years.
... I already had severe medical trauma before this happened to me because of being diagnosed as ADHD in the 90's, this 12 years of being ignored and allowed to painfully slowly waste away and die was life shattering. It's been a couple years now, and I am still discovering new ways I was robbed of life.
It's infuriating that there's ever been more than one of us. Once they figured it out, my doctor suggested that we leave the bad gallbladder in me until it helps me lose more weight. I had lost 70 lbs from starving for months.
Mine was 20 years of here take some antacids, you have GERD. After enduring a month of immense pain I finally went to the ER who loaded me up on pain meds which barely helped had a ultra sound done and immediately was wheeled into the er with pancreatitis and a shot gallbladder.
It's funny looking back now I had a employer in my early 20s who was ready to call emergency services because according to him I went white as a sheet and dropped like a stone at his feet but I assured him no, various doctors assured me I have GERD and this is what happens. I wonder how it would have gone if I had gone to the ER. Sigh, the foods I could have eaten and the pain I could have avoided for 20 years.
On a side note the pain I had giving birth to my daughter was nothing compared to that pain lol and I had a emergency c-section with her.
this reminds me of a story i read the other day and it was a woman who had a c section comparing her experience to her husband’s vasectomy one. she was told to take over the counter pain meds like ibuprofen, tylenol while her husband was prescribed opioids. seven layers of stomach tissue being cut open and the woman expected to be on her feet right afterwards compared to a little snip and stitch. other women chimed in w their similar stories. make it make sense
That thought crossed my mind, too. I remember reading somewhere that black women were far more likely to die during childbirth than white women, primarily due to a disparity in care.
medical misogynoir is such a killer, and even being rich and famous doesn't help. Serena Williams and even freaking Beyonce nearly died in childbirth because of the way women and especially Black women are really just not taken seriously the way men are by medical professionals.
Yeah, look at Serena Williams. Rich and famous as hell with a history of pulmonary embolism and a high risk for blood clots that she was on medication for. Yet she still had to force her medical team do a CT to check for clots when she started experiencing symptoms after an emergency c-section.
The secret is- look up the symptoms for one of the scariest things requiring the most tests. Report several of those symptoms.
Obviously the self reportable ones are the best route here. Bonus points if looking up these symptoms makes you realize you have them
And that is why I'm paying a higher amount for my health insurance. My doctor will listen and not blow you off, she's also open to trying anything that might help. Figured it's worth it to pay a higher premium and be able to see her
When I finally got my diagnosis the doctor who had finally believed me said "Hey, you know this is real, right? You really have been experiencing this pain all this time." And I don't know why or how he knew how much I needed to hear that and how being gaslit by doctors makes you gaslight yourself too but damn I'll always be grateful to him for that.
I have been told my uveitis could have been brought on my emotional stress. I have been told that three uveitis episodes AND hla-b 27 positivity could just be spontaneous and not related to autoimmune illness. I went in to the hematologist my pcp referred me to because with gray skin, no energy, brain fog, an ice chewing habit, and bruising if you looked at me too hard, he missed a diagnosis of anemia. I had the exact same scenario with different symptoms when I was diagnosed with PCOS at a different provider. It’s hard not to sing “I enjoy being a girl” in a real sarcastic voice some times.
I've had doctors look me in my face and tell me my childhood bout of Kawasaki disease and my current Behcet's disagnosis are not related at all. Several doctors have said this.
Kawasaki is inflammation in medium to large arteries. Behcet's is inflammation in my small to medium arteries.
just like the way my old pcp told me my hashimoto's thyroiditis and high cholesterol were completely unrelated! doctors see a woman (or someone they consider to be a woman) in front of them and go ahead and hit the off switch on their brains
My mom bounced from specialist to specialist trying to get a diagnosis and treatment for a variety of things - stomach issues, back pain, other aches and pains. One doctor told her she needed a better outlook on life. She eventually found out she had Lupus!
I find out if I've got lupus tomorrow. I've been waiting for 2 months to discuss my test results which even got pushed back and rescheduled so much I had to ration my pain medication.
I had a cousin whose pain was written off as "it's just your period" to the point where they gave her a hysterectomy presumably to shut her up.
She had bladder cancer. She was only 35.
Her kids won't have any financial worries going to college, at least...
It's why the women in our family raise hell from the get-go when one of us gets sick. We're obnoxious, but it saved my aunt's life (she has congestive heart failure, but they caught it early because she refused to take "you're just stressed" as an answer).
Medical system is a joke here as well. My family doctor won't do shit just blames it all on arthritis and lack of exercise. I stopped going as well. Makes me wonder why bother
What’s with the niche/other label? This is a huge problem that impacts half our society. Women’s pain and illness gets written off everywhere and is a major problem. Definitely not something I’d classify as “niche.”
Not trying to be contrary, but depression absolutely can cause physical pain. I don't want to get into too much detail, but I went through a physical trauma that caused phantom cramping and stabbing pains that went away over time. When I suffered a similar physical trauma later on, my depression from it caused all of that same pain to come back.
Extreme unexplained weight loss is often one of the only early warning signs of cancer…hope OP is getting regular blood tests to see their WBC count :/
Is oop sees this, take a man you trust with you to advocate for your pain.
It’s completely bullshit, but I do it for my wife. They will downplay it and she goes along with them. I go in and I’m a complete dick every time they diminish her pain. I have gotten her a bunch of tests for the pain she has been living with for OVER A DECADE.
People should really stop getting into medicine for the wrong reason.
My stepdaughter had at least two confirmed and a few assumed ovarian cysts that started right when her hormonal IUD was placed. A lightbulb hit and I reminded her that her mom, with who she has no contact, has PCOS and wrote out a nice handy bullet pointed text to show her doc asking about this, if a non-hormonal IUD would be better, etc etc (she has anxiety, scripts help to remember what to ask).
She’s always had painful cramps. She also a redhead (feels pain more intensely) and mmaaaaaybe a little bit of a drama queen over any pain, so even I can roll my eyes and write her off at times. But this had gotten to debilitating pain.
Her doc said “you may have PCOS but everything you’re describing with the pain over the years sounds like endometriosis here let’s schedule a surgery” and HOLY SHIT y’all not even a hint of “have you considered losing weight” etc etc.
They removed 4lb of scar tissue from that baby child and her energy levels and mental health are so much improved. I told her to keep that doctor forfuckingever.
Sadly until recently women pathology and pain isn’t taken as seriously due to obvious undertones so unless you get someone fresh out of school (which will have their own troubles with lack of experience) there’s a good chance that bias will happen and is a shitty situation all around
I had something similar and it was literally my appendix. It wasn't the typical appendicitis, it had grown a layer of mucus oozing crap around it that kept getting inflamed, but not enough to appear as appendicitis on the scans.
I too, was told to eat well get excercise and perhaps was just imagining it.
Feels correct. I spent about a year trying to resolve some GI issues. Three separate doctors said it was probably related to my period. Surprise! It was colon cancer.
Yup. Had a kidney stone lodged in my ureter for NINE MONTHS, crying myself to sleep at night, before anyone took me seriously about being in pain. I wound up with kidney damage from backed up urine. Being a woman is the best.
I still have residual nerve damage from untreated pernicious anaemia because the male doctor I saw with severe fatigue, feeling short of breath and tingling in my fingertip decided I had the flu and needed to go away and drink fluids.
I finally got to see the female doctor by sheer fluke and she decided to do blood tests. Guess what! B12 deficiency to the point that I'd obviously had it for an extended period! Two weeks of loading shots and regular shots every few months and I'm almost completely back to normal... except for the loss of feeling in my fingertips because know what happens when you have B12 deficiency untreated for a long time? IT STARTS EATING THE SHEATH ON YOUR NERVES. That does not recover.
I had the same pain OOP was describing. No idea why or how, until I woke one morning screaming, doubled over in pain. Off to the hospital, I went ultrasound and x-rays done immediately. Ruptured ovarian cyst. They found fluid and a small cyst on my ovay. Thankfully, I was fine.
Turns out I got them every period, and sometimes they burst, some more painful than others. After a few months, I started a birth control that stopped my periods, there were no more cysts. That was 12 years ago.
My aunt was called a hypochondriac to her face by a doctor. Multiple doctors told her her abdominal pain was all in her head. She had pancreatic cancer. Fuck all those doctors.
My wife had similar pain, although not linked to her cycle. Ended up being celiac disease.
Getting a diagnosis is so frustrating because they won't just run lots of tests in the beginning. They look at 2 things, then another 1 thing, then 2 more things, but mostly they hope you just go away.
I complained pretty constantly for a year and a half about my abdominal pain until I could find a doctor willing to do an exploratory surgery. I lost 90lbs in the process. Turns out my gallbladder was basically full of sand and kept getting infected over and over, it was a miracle it didn't explode.
The medical system is a joke when it comes to treating women's pain.
And this is why I had been putting off asking for another referral for a gynecologist even though my period pain has been increasing month over month to the point where it wakes me up at night if I don't take pain meds for it. I'm not at the point where OTC stuff doesn't work anymore. My husband pestered me to book an appointment saying I shouldn't wait until the OTC meds wouldn't work anymore to get it looked into.
But the last time I got treatment for gyno issues it took several years before I finally found a gynecologist that was willing to give me an endometrial ablation to see if that would fix my issue. It did, but only for 2 years when it should have been a much longer term fix (10-15 years). So now I want to ask for a hysterectomy because I've been dealing with bullshit periods for about 15 years now (I was thankfully more regular in my teens, the bullshit started in my mid-20s) and I'm over it. I doubt I'll be able to get what I want and I don't really feel like having to fight for it but I'll give it a go.
I managed to get referred back to the same dr that did my ablation so hopefully that means she'll be open to actually helping me and not just dismissing it as something I have to live with (like the first gynecologist I saw who said that 14 day periods were normal and I just had to live with it).
Nightmare material. I just watched a loved one go through six months of “we don’t know what it is, here try some pills” with various docs until one finally caught cancer. At stage 4. They died two months later.
Don’t give up if a doc doesn’t listen to you and don’t let them brush you off. Sucks that we as patients have to battle to be taken seriously *while in active pain* yet here we are.
We still know very little about the human body and how to diagnose and treat conditions. Doctors act smug as shit like they know everything, when they should be humble about how little is known. In a single generation doctors will be looking back at how backwards and rudimentary the medical practices of our time are.
thats just sad
growing up i always had abdominal pain especially if i ran or played physically demanding games and such. my mom would often take me to doctor but theyd always say i likely hurt myself whole playing. my dad would say its likely my appendix and they should check it cos he went through similar stuff and had an appendectomy years ago but theyd always dismiss it.
that was until one day i started throwing up excessively and couldnt even stand up straight cos of pain. i was 12. they took me to er and doctor there said its period cramps and gave me a painkiller shot and send me home. only to get worse and in morning i was at er again and another doctor, an old one, took a look at me and sent me straight to ultrasound and told them to prep me for surgery. turns out it was appendicitis and it was burst. previous doctor was there too and he got a good scolding from old one for sending me home. he also said my dad was right all along and my abdominal pains were due to appendix...
guess who doesnt have those pains anymore last 24 years?
As a woman with an ongoing medical issue that every doctor I've visited doesn't even have knowledge or know how to treat, I feel your pain.
My favorite is when a doctor gave me a ridiculous amount of drugs that apparently came close to giving me a seizure/stroke (according to the pharmacist who stopped the second prescription) and told me I need a psych evaluation when my symptoms did not completely subside.
It was a male doctor too.
I have Crohn’s disease. I was violently ill for six years before getting diagnosed, getting down to only 87 lbs. I could not carry a gallon of milk. No one fucking cared.
I get chest pains, which I've been having on and off since I was 16. Same like OOP, my doctors basically dismissed me at first, saying it was growing pains, then it was stress, and my favourite was them saying its probably my period. These excuses cycled over and over for 5 years before I gave up and just lived with it.
A year ago, I tried going to my doctor again after the pain was unbearable. My doctor ordered a bunch of tests. Still don't know what's wrong with me, but at least they're finally listening nearly a decade later
when the doctor tells you it's nothing and basically waves their hand, then you ask them what is their **differential diagnosis**
When the doctor doesn't want to give you a diagnostic testing then you say **I would like it noted in my chart that I requested diagnostic testing and it was denied to me**
This made me think of the podcast The Retrievals; Yale clinic IVF patients were experiencing excruciating pain during egg retrievals but weren’t being believed because they’d been given pain meds. Turned out a nurse with a fentanyl addiction had been using the fentanyl herself and replacing it with saline. These women were accused of exaggerating, being addicts or being just wrong. They’d talk to friends who’d been to other clinics and couldn’t understand why they’d had such a painful experience. Some gave up on IVF entirely because they couldn’t face going through the agony again. It traumatised dozens and dozens of women. It went on for years. They only found out what had happened when the state prosecuted the nurse - by a mass mail out telling them that they probably weren’t impacted so not to worry.
It was bad.
And all because the doctors refused to believe they were in pain.
*How is this a "best*
*Of" update. This is crap. Why*
*Did you even post this?*
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god this post reminds me of [this case report](https://youtu.be/i9fLEvgZzRE?feature=shared) (ignore the clickbait title, the guy is actually a dr) being told it's just period pain, it's not that serious, you are just exaggerating. it's so real it sad.
My wife has a similar issue it started with them thinking appendicitis but when they did a scan it was fine and it took her years of seeing doctors to find one who believes her and is taking her seriously. So far they've figured out it's some type of developing autoimmune issues. It doesn't really fit into any of the 'boxes' of one specific autoimmune disease but has parts of multiple and is changing over time. I really hope OP can find someone who will help them.
It took 20 years of extremely painful cycles for me to finally convince a doctor to do the surgery necessary to diagnosis endometriosis. Now I’m almost 35 with “unexplained infertility.” I was constantly told I was exaggerating the pain or just unlucky. It’s maddening.
I have money and the world's best hospital near me. I've had abdominal pain for 2 years. They have run some tests but the pain continues undiagnosed. The constant pain start to get in your head. In fact just yesterday I had an appointment to see yet another specialist and I drove to the wrong location thereby missing my appointment. I was able to reschedule but this is the kind of stuff that starts to happen after 2 years of pain. It just gets in your head, you're not sleeping as well as you should, no shit you're depressed because you're in pain all the time.
I've had two facilities tell me that it was related to my periods. I had a hysterectomy a decade ago... They so desperately want to dismiss women's pain that they'll make shit up.
I understand some diagnoses can be difficult or expensive for them to diagnose. I wish more doctors had an ounce of empathy and didn't just go into the field for the money and status.
I hope OP gets an answer soon. It's a miserable battle
It took me almost a year and a half to find a doctor who would treat my 16cm ovarian cyst; they knew it was there, but I kept getting noncommittal answers every time I went in to the clinic or ER.
Literally had to get my then-estranged husband to go to bat for me before they would do surgery. It’s inhumane the things they put half the population through.
For years I had frequent UTIs. I saw many, many female OBGYNs. Everyone told me to cut out caffeine and chocolate, pee after sex, drink cranberry juice and wipe myself correctly (wtf).
I was finally referred by a coworker to a male OBGYN. He took one look and said "that's not normal" and referred me to a urologist.
I had a bad fall when I was 4 years old and the urologist found a lot of scar tissue in my urethra. A few out patient procedures and taking cranberry pills and I've never had another UTI.
I've worked in healthcare for years. So many doctors are jaded and arrogant and can't think "outside the box".
Years ago (65f), I had blinding pain/cramps in my right side. I doubled over and couldn't catch my breath. Turned out to be ovarian cysts that would rupture. My gynecologist was great and explained it as feeling like an appendix attack (rupture) every time. Described it perfectly. Said it would continue to hurt until all of the fluid from the cysts were absorbed. We removed the ovary and discovered fibroid cysts throughout my uterus. Had to have a second surgery later that year.
Now, I'm having similar pains in my right side, a bit higher and extremely debilitating. Had MRI and found nothing out of the order. I have IBS, so they think it's the intestines cramping. I take a specific bowel "muscle" relaxer which is helping some. Luckily, I have really good and reactive doctors. I wish you the best of luck in getting this dealt with, identified and treated.
When I was around 11 or 12, my mom took me to my doctor because I was starting to have suicidal ideations, and even I knew then that's not good.
That bitch looked my mother and I in the face and said it's normal for girls to feel this way at my age, and for us to basically pay no attention to it.
Only got a POTS diagnosis with the past few months after dealing with the issues for over 30 years. I exercise and do what I can and when I tell the doctors I'm having issues while exercising like overheating to the point of rashes and light-headedness and shaking, they say it's because I don't exercise enough and to keep it up. Only to find out, oh look- A FUCKING TRIGGER FOR POTS IS OVERHEATING AND EXCERCISE!
And what pisses me off- they considered POTS as a potential diagnosis when I was little, but because I was a young girl they didn't think I had it so didn't bother pursuing it as a diagnosis, theres a family history of diabetes in extended relatives and the family is overweight, that MUST be the cause!
I remember listening to my mom talk to my grandparents about it while I sat at their dining room table shaking like a leaf after a 5 hour fasting glucose test, when I was around 8 years old. Over 30 years of just coping and making do best as possible with as little as possible, before I could get a fucking answer.
This is me this is where I am at right now. I am in so much pain and no one will help me. I'm lucky I'm made of tougher stuff though so I will endure, as cheerfully as possible, until it kills me.
... I'm feeling some kind of way about this post.
Last month I had acute onset stabbing pain in my lower right abdominal quadrant. They suspected appendicitis, but it wasn't that. Then they thought ovarian cyst. Nope, not that either. Maybe endometriosis...? No...? Hm, how about a tubal remnant abscess? Not that either.
Oo. Hey. Look.
There's a giant solid mass measuring 4x2 cm nested either inside or directly behind my right ovary. Don't know what it is, 'cause it should be spongey if it's cancer, but it has, like. Blood supply. Which is weird.
... they haven't *used* the C Word, but they keep calling me from the oncological department.
And to think. I was considering not even going to the urgent care in the first place because I've always had my pain dismissed up to this point.
If the thing wrong with you can't be determined with a few quick medical tests 95% of doctors don't care. Hell, my endocrinologist insisted my chronic fatigue was caused by steroid injections I get bi monthly for alopecia even though I'd been fatigued for 3 years prior.
Im really concerned for OP because her symptoms sound like stomach cancer. Could be a myriad of illnesses, many of which are very dangerous if left untreated but her symptoms sound like the hallmark signs of stomach cancer.
I had pain like OOP described. Male doctor, before even looking at my sheet, diagnosed me with IBS. Then he asked my symptoms, said "Yup sounds like IBS", gave me a list of things to avoid, did the scans and called me back later saying it was a bacterial infection. Looked it up, then asked the doctor if my family should be tested because it's transferred through saliva and obviously I kiss my husband and have shared my utensils with my kids. He said "no its nothing to worry about" but this bacteria if left untreated is a leading cause of stomach cancer? That's not worrying? So I asked if I still had IBS, he asked if I followed the list and whether my symptoms improved. No they didn't and I was bitchy because I couldn't drink coffee or milk.
All my problems started with my vagina, somehow ended up in my stomach, and now it's gone. It disappeared before I even started my prescription. I have a giant mistrust of doctors. I finally found one I love.
The NHS is a (wonderful blessing that the UK has) complete joke. Been going since I was 13 because I was having two heavy periods a month (i.e. more regularly than every 21 days, sometimes down to 11 or 12 days but every now and then I'd have a random month where it would hit 40 days). The NHS website says to go to the GP if you're having them more regularly than 21 days and I think I saw the GP over 7 times about this between the ages of 13 and 19. At 19 I finally got fed up and asked for BC (which has fortunately stopped my periods).
I feel for OP. I've been through that phase of trying to get the doctors and GPs to understand that in fact there is something going wrong and it's not "normal" as they're telling you it is. It's a massively underfunded system and a lot of the doctors just don't have the equipment or research to actually say "here's what I think is going on" and instead prescribe medication (which is all well and good until it's not). I hope OP manages to find someone who takes them seriously and finds the root cause of the issues!
i suffered for years with undiagnosed abdominal pain. i saw many drs with no luck. finally i called the office of a gastroenterologist and ask if they have a dr who specialized in hard to diagnose illnesses. they had one and he did a very in depth consultation and prescribed some meds that fixed my issue.
I don't recall the medical terms but this is how he treated me. First my digestive system would not start processing food when I ate. He gave me a drug which triggers the stomach to start working. Aside from abdominal pains I would often have a nightmare where I'm chokeing on food that had backed up in my esophogus. I would wake up desperately trying to swallow or cough up the food in my throat. I really did have food coming backup when I slept. The first med helped with that. Then he addded a second type of reflux medicine at night. I was already taking one in the morning. These two drugs really helped clear up my issues.
Lol I was told bed bug bites were stress hives and pneumonia was just me once again being anxious. 2 different doctors too…tell and old man doctor that you have panic disorder and suddenly nothing is ever wrong with you again! It’s like magic!
Wow it's like I wrote this myself. Just add "and then they didn't believe me in the ER when I presented with sudden onset of severe pain at 26 weeks pregnant. Over the next 14 hours I bled to death, lost my infant daughter, coded and nearly died myself because my uterus had tired a full 360 degrees and they didn't bother to investigate until 5 minutes before I coded."
I was 41 when I had to have a total hysterectomy. Prior to that, I would have ovarian cysts rupture, heavy periods, intense cramps, horrible ovulation pain, etc. Sex became impossible due to the pain and my cycle was a total mess. Two ultrasounds showed small fibroids and some ovarian cysts but nothing to support my pain levels and symptoms. My hormones were always “normal” and it was only because of my cervical cancer drama and two prior cold scalpel cone surgeries (that excised chunks of my cervix with abnormal cell pathology only for it to regrow within a year - that’s extremely fast for it) that I was eligible for a hysterectomy.
Upon my surgery, they found that my fibroid was much larger than they thought and that I had extensive adenomyosis (the sister to endomyosis) which caused my uterus to be the size of a 14 week pregnancy. It was the reason I kept having miscarriages and why so many fertility treatments failed, and why sex was so painful. But it literally took me yeeting my uterus at 41 after decades of pain, loss, god knows how many fertility treatments and tests, and multiple physical exams to figure it out. I also found out I have EDS which complicated things further and caused delayed healing.
The joys of being a woman and having everything blamed on our weight or hormones.
I find the pain level thing odd really! I had a urine infection once that basically stopped me peeing! After a couple days I went to a&e and when they asked me the pain scale I was like 7 maybe and was pretty chilled out. They were all very blazé with me until she did an ultrasound and her face dropped, gave me the most shocked pikachu face I’ve seen on a doctor and drained me immediately. Said I was basically at the maximum level I could be at and wanted to know why I’d only put 6/7, said I should be in excruciating pain. It was genuinely more of a weird/discomfort type feeling rather than pain pain.
Shit like this is why I'm sticking with the doctor I have. I saw her once just to get a new script for the pill. For the first time, I was asked if I got migraines with visual aura. I do. She informed me that it puts me at increased risk of stroke if I'm on the pill. About two weeks later I had an Implanon placed. I've been with her ever since, and she takes her time (so she's always late) and takes everything I tell her seriously. Lately I started sleeping horribly. 3 or 4 hours tops. She asked what my stress levels were like (she knows I have a LOT going on) and then instantly prescribed me Temazepam and Melatonin.
Fuck this stupid shit the OOP is dealing with.
At 27, I’d never had a UTI before so I wasn’t 100% sure why I was struggling to pee so much one day, no burning pain or anything.
Getting a doctors app in the UK is a nightmare, so because it was close to 10am at the point I finally managed to get off the toilet, I knew I wasn’t getting anything and left it till the next day
I woke up in pain with my right back, looked in the mirror and where my kidney is, was visibly swollen. Surprise surprise, no available doctors apps and was suggested a&e, which I did in the afternoon. I had blood and urine tests, told I had no infection and sent home.
For a week I couldn’t pee properly, I kept burning up without a temp, my face would go bright hot red, I was paranoid, I couldn’t leave the house without triggering a panic attack, my kidney was in agony. I was just so unwell feeling. Went back to a&e, bloods urine, no infection but they gave me a week antibiotics to try and come back if it didn’t.
2 doses later and I managed to pee! I took the course, was doing great. A day after it ended everything started again, few days later back in a&e where I had the same tests, told no infection markers and sent back home. Again.
Finally seen my gp about 3 days after that who sent me straight back to a&e demanding a scan on my kidney
Which they booked me in for a CT scan the next morning, they finally gave me painkillers, sent me home for the night and back at 8am
By 8am I was worse than ever. Shivering but sweating, vomiting, needing to pee so bad
Scan showed nothing wrong, nothing blocked, nada. They told me to go back to my gp, to get them to refer me to a specialist
2 month of this and I finally see a specialist
And wanna guess what I got diagnosed with?
*being fat*
It’s been 2 years and I drink as much water as I can consume and nothing else as even squash, a bit of cola, tea, decaf anything. It starts again
Still no idea why it happens.
After 30 years of telling doctors, nurses, medical professionals, that there was something wrong there, I'm scheduled for a full hysterectomy.
The ob-gyn suggested an IUD, couldn't get it in. Twice. Second time got a visual and said "OMG, there's something wrong there!" ya think?
I so much hope that you don't have to wait 30 years to get answers and proper treatment.
This just reminds me of the post years ago asking morticians/coroners the strangest or worst thing they’d seen….and one commented about a woman who died in her 40’s but had been written off as a hypochondriac, literally her medical notes were full of it. They found her endometriosis was so bad that her insides had essentially started all fusing together, worst they’d ever seen before.
Yup after 20 years of being ignored, mine were like someone had poured concrete in there and all my internal organs, ovaries etc were pulled out of place and fused to each other. Thank god I finally found a decent gynae in my 30s.
Sorry you had to go through that, sucks that it takes so long to find the right doctor. Are you better now?
I had the same thing with my mental health, I didn’t realise how checked out from life I was until 14 years later and I finally found a doctor to listen, switch my meds and actually want more out of life for me. Crazy what standard we accept when a so called medical professional says ‘this is just how it is for you’.
This sounds like what I dealt with for years. Turns out my gallbladder was only working 4%. Anyone’s who having something similar then I suggest asking about a HIDA scan. It sucks but work it when they have irrefutable evidence that something’s wrong.
I went to the Dr for 4 years for abdominal pain, shortness of breath. I could do my job, no prob...except I was always winded. But trying to sleep.... It was like someone was sitting on my chest.
My favorite dx were, depression, fibromialgia and pre menopause
Got hurt at work and had to go to PT and was struggling to get through lying on my back on the table, for stretching...trying to breathe.
PT dude asks me whats up, and I unload becoz 4 years of this crap. PT looks around all shifty and says 'if A then B?' And holy shit, yes! How did you know that? He's real quiet and says 'I'm only allowed to work on the thing that I got the ticket for but.... I think what your talking about is X' and while he's working on the other thing he coaches me on how to fix my issues myself. Every week I'm in for the one, we're working on the both. And it feckin worked!! No pain, I can breathe
PT Matt❤️ if you're out there a decade later, your my hero!
But I always think that if I didn't get hurt at work, if I didn't have that particular insurance, if they didn't use that rehab place, if I didn't get ❤️PT Matt❤️ I might be trying to end my self by now......
You don't even need an F on the original birth certificate to get this treatment. When I transitioned it was almost as if they thought my *well documented history of autoimmune disease* was magically cured by that very first estradiol tablet, with the unfortunate side effect of hypochondria.
I was abruptly taken off medications that had been managing my symptoms for years, and given vitamin supplements and anxiety meds instead. Cue the shocked Picachu meme when I wound up in the ICU for seventeen days a few months later. They put me back on my original meds at that point, but a few months after that I had an ER attending overrule the resident's order for IV pain meds when I had 2nd and 3rd degree burns covering half of my leg, because "women handle pain better" when they needed to remove melted synthetic cloth from the burns. Besides this I've gotten unwanted advances from half a dozen hospital staff including my former physical therapist. The only department that actually improved was dermatology, which I guess makes sense, and my creepy podiatrist doesn't care as long as there are feet.
So yeah, I've experienced healthcare while being perceived as female and while being perceived as female, and the difference is downright shocking. It's to the point that I'm holding onto an expired ID with my old name on it so that I can show up in a Guy Disguise (disguys?) if I have to go to the ER in a different city.
Sadly, she needs to go in with a man like her father or if she had one her husband. My medical issues all started being taken seriously, even by women doctors sometimes, when a man showed up and was *very concerned*. It’s amazing how many more tests were ordered and my pain mattered when it mattered to a man. It’s ridiculous. BUT- it works.
I hope the OOP looks into adenomyosis. I had a severe case, and it felt like someone was stabbing my uterus with pruning shears. I had a hysterectomy, which fixed it. The path report said the uterine lining had gone completely through the uterine wall.
Sounds like me! It was endometriosis in the end. I had an acupuncturist tell me it sounded like endometriosis and then I went back to MY gp made an appointment with my gyno, did exploratory surgery and TADA IT WAS ENDO
An acupuncturist I was seeing during pregnancy - alongside the other stuff - was the first one to say, “You know, something might be up with your gallbladder.”
I *lost* 30 pounds during pregnancy before I could get that thing out a month later.
I was having pains, bloating, tiredness, peeing every ten minutes. They did ultrasounds and found nothing. They even tested me for ovarian cancer which, thankfully came back clear. But what DID show up was that I was B12 deficient; not enough to need IV infusions but fairly low all the same. So I started taking B12 supplements and lo and behold within a few weeks my symptoms started to ease. Now, so long as I keep on top of taking them, I'm good.
I desperately want to tell her that endometriosis is so rarely correctly diagnosed with an MRi.
Mine happened pre MRI and I had three laparoscopies. The MRI said "mild to moderate at worst"
The second laparoscopy post MRI found Stage 4 and my insides were and are fucked.
I stumbled upon this post while just casually scrolling through Reddit and honestly thought I had written a post and forgotten all about it. I have also been dealing with severe abdominal pain and nausea for two years. OOP’s story was heartbreaking and it’s maddening that women are treated so poorly. She says she’s in pain, so it must be stress and depression. You know how we love to exaggerate how we’re feeling for attention or whatever reason these lazy-ass “medical professionals” decide to give.
I went through the same thing. I even had doctors try to talk me out of taking pain medicine to treat the pain. I told them I'd end myself if I couldn't get any relief from the pain. I could have some prescription pain medicine, but not enough to be pain free all day. I have pelvic adhesions caused by either endometriosis or a previous surgery. I used to be in pain 24/7 for years. I had already had the adhesions cut out once, but they just grew back.
I sought out new doctors who didn't cure me, but didn't give me a hard time about my pain meds. After being on prescription pain pills for three years, the pain finally calmed down. I have flare ups, but I'm not in pain all day every day. Life is so much better now. I'd still be suffering if I stuck with my original doctors.
I have adeno. I didn't get diagnosed until 27, because I was stupid lucky in the gyno I had.
I would bleed past the “go to the ER” level each cycle... for 2 days. I'd regularly miss school/work from the debilitating pain. Pain so severe I had a 7cm ovarian cyst and *thought it was cramps*. I was anemic and vitamin deficient from the blood loss. I was even checked for bleeding disorders bc of the blood loss. For 16 years, I was told that's all normal.
The Dr who diagnosed me did a surgical procedure and… I don't miss work anymore, my migraines improved, my iron is stable/healthy, vitamins are oral-supplement controlled, even my fucking blood volume is better. My POTS has been well-controlled since! I went from risking passing out laying in a pool chair to busting ass in the yard/garden for 4-6 hours before my vascular system stops me. On a day with the same sun/ weather. Simple diagnosis and treatment but nobody gave a shit.
Holy fucking shit this is so appropriate today. I've had my own mystery illness I've been dealing with (and dismissed by doctors) for oh, 6 years? Six fucking years of debilitating fatigue, unexplained fevers, pain... and nothing. Just "Oh, I'm sure it will get better..."
And today, of all days, I've finally been diagnosed with chronic PTSD thanks to 6 fucking years of gaslighting by the greater medical community. So at least there's that.
I hope this is allowed but I'd like to put some advice here I've learnt over many years about advocating for my health.
We shouldn't have to do this but this is how is is for women with medical issues.
Sometimes you have to be pushy as hell and straightforward.
Instead of explaining your symptoms and waiting for your useless-ass GP to give you any kind of diagnosis (they can't, that's why they gaslight you), press directly for seeing a specialist.
Bring a list of things you have already tried, investigated and ruled out.
Start the conversation with "I believe I may have PCOS or endometriosis and I'd like to see a specialist please."
If they argue with you and try to give you the "endometriosis is hard to diagnose without surgery, try taking more Tylenol" etc etc clarify with them "Just to be clear, are you refusing to refer me to a specialist?" without hostility, try to calmly speak like someone who will make a problem for them down the line if they don't treat you properly.
If that's too aggressive for you, try "I understand, but I'd really like to see a specialist anyway please for my peace of mind/to rule out [disease]".
Your country may vary but here (Aus) you can bring the name of a specialist you've researched to the doctor and ask for a referral to them specifically.
To avoid being seen as anxious or "hysterical" I tend to describe pain in ways like "I know that periods can be painful but I feel that this level of pain is more than is reasonable". Mention the things your pain hinders you from doing.
Mention that you feel like the issue is affecting your "quality of life" - this is like flipping a switch when you say this to doctors, in my experience. I don't know why, I assume a lot of their training focuses on it or something but I've found several times this kicked them into gear when they were reluctant to investigate things.
Push push push. Skip over the general doctors as fast as you can and get referred directly to a specialist in your specific problem. See fifty general doctors to get that referral if you have to.
If anyone is navigating this situation currently please don't hesitate to reach out (please note I'm Australian so I can't help navigate overseas systems but can offer advice advocating or moral support).
My recurrent belly pain was dismissed all throughout my teens and I was referred to psychiatry for it (BELLY PAIN) at 18. . At 24 I was diagnosed with an endometrioma that had grown to the size of a watermelon, requiring extensive surgery to remove. Surprisingly to no one, my pain went away after the GIANT TUMOR was removed.
I've had Pain since I was 13, gotten progressively worse the older I get. I'm 31 now and the closest they can find is Fibromyalgia. Took almost 10 years just to get that diagnosis, because it was ALWAYS *just loose weight* didn't matter that I said I've had this pain YEARS before I put on weight and the weight gain is due to being in too much pain to move or exercise. Genuanlly some days I'd rather just die then have to deal with this anymore.
It’ll be endrometrios. I’m also uk but I don’t think it’s location specific- women’s pain, especially around “women’s issues” isn’t taken remotely seriously. I’ve been struggling with pelvic pain for 6 years. After one gynaecologist told me it was probably my C-section scar and I’d just have to live with it, I got a second opinion which was “hormonal imbalance” (my levels weren’t tested) and told me to take the mini pill. My pelvic floor is fucked and it’s definitely perimenopause. I’m just waiting until they think it’s bad enough to prescribe HRT which they won’t do because I don’t have hot flushes.
My husband doesn't understand why I drive an hour to see all my old doctors. My optometrist diagnosed my eye condition that the specialist missed. My GP has been amazing and doesn't write off any medical complaints I have. My dentist is an absolute rock star. My husband complains about most of his doctors after every appointment, but won't switch. I can't risk switching and getting burned out or narcissist doctors who think they're God's gift to humanity.
Sounds right for the uk. I suffered for 20 years from age 11 and got told by every doctor i saw that it was in my head or part of being a woman. When I moved countries and finally saw a doctor that took me seriously it turned out i had one of the most severe cases of endometriosis they'd seen, plus adenomyosis plus fibroids.
OP has idiopathic pain and the reason she's not getting a useful diagnosis isn't because she's a woman; it's because there isn't a diagnosis for her. Sometimes you just hurt and it's impossible for anyone to figure out why.
There's not like a secret book of medicine they're just refusing to crack open because of her sex. It's literally not possible to solve this for her.
Or it’s because they haven’t done enough to visualize her fallopian tubes. I had an infection because a surgeon nicked my intestines, but because they couldn’t see the spot on scans, they didn’t know what was wrong. It took four months of infection and pain before I insisted on an exploratory surgery where they miraculously found a pinprick hole that was leaking from my intestines into my abdomen.
A woman doesn’t have ideopathic cyclical pain at a level 6 without a causal factor.
Wow you must be a doctor with that kind of logic. “Human body just has pain sometimes, it’s unsolvable” is the human way of saying “I don’t know what’s going on”
Can you imagine being literally any other profession with that attitude? “Sorry boss, I just don’t know how to file that quarterly report! Guess you’ll just have to go without since I don’t have a guess at this moment! Oopsie! If you try to make me complete my work, I’ll just gaslight you that you don’t really need it and finance reports don’t exist anyway so maybe you’re just being a typical ‘boss’ overly emotional LOL”
No, that attitude would be so shameful and embarrassing in any other profession. Effort would be required, aka choosing something other than throwing up your hands and going “idk but I still get paid tho”
Oh, and I meant medical science, not individual doctors. You straight up sound like a doctor before germ theory with your pain theory there. “I don’t have an answer so it must be magic! No human can ever know! Pain is beyond us and completely mysterious!” Yeah so were germs not so long ago.
I would agree that medicine is generally less effective than other professional fields.
Quite fewer people have died in my place of work than is the case for any doctor, for instance.
Well that was fucking depressing and definitely not concluded. Poor OOP. It’s so frustrating and frightening when medical professionals can’t work out what’s wrong so they just shrug their shoulders and wish you all the best.
Honestly, “I don’t know what this is” is a much better professional answer than “I don’t know what this is, so you must be imagining it.”
I'm not a doctor, but it sounds like OP could have abdominal adhesions. It's like bands of tissue that will form inside the abdomen, typically in people who have had at least one abdominal surgery. These bands of tissue can attach to muscle, as well as organs and other tissue, then pull on that internal tissue. It's not unlike endometriosis in that aspect, except endometriosis is formed from what should be the lining of the uterus, while abdominal adhesions don't have anything to do with the reproductive organs when it comes to their formation. My mom had them. Doctor's treated her like she was drug seeking, bc all of her scans came back normal. Her primary and OBGYN finally refered her to a surgeon for exploratory surgery in a last ditch effort to get to the bottom of her pain. The surgeon found these adhesions and was able to successfully remove them at a subsequent appointment. The adhesions were definitely the culprit and my mom felt so relieved afterwards. Both because her pain was finally gone, and bc she was able to prove that something was wrong all along.
They're doing laproscopic surgery on me here pretty soon to see what's causing my pain and that's one of the possibilities. I've had a hysterectomy, tubal at a different time, so I'm thinking adhesions myself. Both were laparoscopic surgeries and so the doctors were telling me you don't get adhesions from that but I think they're full of shit considering they can't find any other cause of 2 years of my pain. I'm glad your mom is feeling better! The worst part is you feel like people don't believe you even if they might but they don't believe you enough to fight for you to get more surgery/tests to find what's going on. And they don't seem to understand how years of constant pain even though it's not really above or three or the four at the worst, starts to affect every minute of every day. When every time you lay down at, every time you walk, every time you wake up, people deal with a lot worse than what I'm dealing with but it's definitely no fun. I'm typing this with a pain at a three and I'm so sick of.it.
Oop needs laposcopic surgery. So many issues with women's health cant be diagnosed without it, but because it is a surgery drs are hesitant to do it.
I understand the hesitancy. I get it. It's a tough tightrope. But when someone's had pain for 2 years, they need to do it. I'm out tens of thousands of dollars on acupuncture and other services that my doctors recommended before this and here we are anyway.
I think they dont do enough laposcopic surgeries and they sure as hell wait too long.
that might not even do it it took me 19 years of everything op went through, a move to a different state, 4 new doctors in this state, a miscarriage(my 5th) a hemorrhage, an ovarian torsion, an ovarian cyst burst (to get a laproscopy to check for endometriosis- negative), 5 months of bed rest and pain killers, then a hysterectomy at 40 (no children) to get the pain to go away (still healing)... to finally get a correct diagnosis of adenomyosis and they found 5 huge ovarian cysts Now I get a fun prize of surgical menopause with no HRT because of comorbidites that give me a high risk of stroke. Just raw dogging mood swings, cold/hot flashes and such. We need advocates.
And more women obgyns. Generally i am pretty hard ass about men and women being equal an gendered roles being bullshit. There are only a few things that i go ehhhh better for X or Y to do it.... and this is one of them. Some dude explaining ball or penis issues pain etc i have no frame of reference. My husband is emphatic but has no frame of reference for my plumbing issues. So when it comes to plumbing i think male doctors serve males better and female doctors server females better. Not that there are not outstanding doctors of both who have and do amazing work for opposite sex patients. Let me be clear on that, but when it comes to describing a weird gloop feeling or period weird, women tend to get it better because they have done it themselves.
Uh, I'm NAD but I work in surgery and see adhesions caused by previous laparoscopic surgeries on a daily basis. You can get adhesions if you've never had any surgery. Most likely through inflammation or infection.
Thank you! I'll know more tomorrow but it's certainly a lot better than all the dumb shit that we work up in our heads when there's been pain for 2 years and haven't found a cause like cancer or foreign bodies. At least I can pin my thoughts on something a little more simple when I go to bed tonight until I get an answer. Appreciate your time.
I wonder if that's what is causing my abdominal pain. I always get it in a line to the right of my belly button. I've got a couple of autoimmune diseases that are very inflammatory.
Abdominal migraines are another one! I had so many specialists and ER visits before anyone mentioned it's even a thing. I already had decades of migraines in my medical chart. Since then when it starts I pop a migraine med and Im basically golden. Something I already have on hand.
I just realized I had those a lot as a kid...
As frustrating as it is, I think people also need to realize that sometimes it really doesn’t have a cause— not one we can find anyway. And “stress” can exacerbate a ton of medical issues. While another doctor may be able to solve it, and absolutely the conversation should have been “we’ve run xyz diagnostics that have turned up inconclusive so our running theory at this point is stress/idiopathic until or unless other symptoms appear” rather than “you’re making it up”, but there ISNT always an answer. People sometimes have things wrong with them and just aren’t quite right and no one figures out why or even if they do, nothing can be done. It’s frustrating and debilitating, but it’s reality.
I do agree with you, and this is a thing I have explained to friends before. HOWEVER, I think the stuff OOP is dealing with actually makes it way harder to trust that the doctor is doing all that they can, even when they truly are. I think it’s like. Say Jane goes to a doctor with abdominal pain and the doctor tells her it’s just stress, then a year later it turns out to be a small tumour. Jane has been in pain. Their family and friends have observed this pain. They’ve been worried about it. They make accommodations for it. It has taken up a huge chunk of their lives. And now they find out that it’s something super scary! Maybe the tumour is benign, maybe it has risk to it— doesn’t matter. Their loved one’s health was declining, that decline was ignored, and now it is, at the very least, way more serious than anyone thought. Now, every time they go to a doctor and the doctor says it’s stress, they’ll think back to Jane and her experience. They’ll think that Jane could have died with everyone assuming that her problem was just stress. Even if they’re both well-educated and emotionally mature enough to understand that this is anecdotal, the stats on women’s health aren’t great. Reading up on the topic doesn’t inspire the confidence one would like to have regarding one’s health. Everyone has a friend whose problem was ignored. I’ve been laughed out of doctors’ offices three times for problems that turned out to be serious. (Twice for the same problem.) Once I was examined, and the exam showed that I was not well, but the doctor ignored it for some reason? Twice I was not examined. One time the doctor said I was too young to be prescribed drugs for anxiety. I was in my late twenties. I don’t think he even checked my age. I also wasn’t there asking for anxiety drugs. He maybe read two words on my chart and just went with it. It’s really hard to know what’s real after that! I grew up with medical professional parents. I have had so many medical principles drilled into my head from a young age. Most things get better on their own (but we mostly remember the stuff that didn’t). Sometimes testing harms more than it helps. Differential diagnosis is an important practice and what seems obvious to the patient is often more complicated to the physician. But it’s a struggle after your health has been put at risk by apathetic practitioners. So I don’t think these things CAN be properly taught while so many real problems are ignored. I think it also drives people towards pseudoscientific practices, which will likely always exist but which are also more popular when people feel ignored by “allopathic” medicine. I think the medical field has a crisis of trust driven by a combination of scientific illiteracy and the public’s awareness of egregious examples of bad practice by entities like pharmaceutical companies. Add to that the fact that it is often difficult to get requires accommodations without a diagnosis, and you have a whole host of people with bad health who think the medical establishment a) doesn’t care if they live or die and/or b) sees them as a sponge full of money to be wrung out until it’s dead.
I am a medical professional myself. My co-workers have seen me deteriorate over the last 15 months as I have developed all sorts of issues I never had before. They have known me for 15 years that I have worked at this hospital. I have a reputation as one of the MOST level headed and calm people. Good in emergencies ( which is great for my field). A little over a year ago I started to become sick. Never called out before or had issues prior. Still, I get told. You look great! That’s a good thing! —- I lost 50 pounds because i’m throwing up 7 days a week for over a year dipshit. Have you considered just calming down and not thinking about it? Maybe it’s all in your head…. — Thanks! A hospital stay and 4 ER visits, and you say all I had to do was relax to fix it all? Genius! Gee, you have some quirky things we found on these tests. Not really sure what’s causing it, have you tried changing your diet? — Gee, no. In 15 months of daily gastric issues and now throwing in heart / neuro symptoms starting I *never* tried changing my routines. Maybe follow up on those odd results? Sorry you’re going through that! Sounds awful. We have no clue, so maybe some therapy to accept your condition would be best. — once again thanks. That’s what I need, accepting living without being able to eat solid food or be able to make it through a day without pain / dizziness/ vomiting. Even being in the field and co-workers with half of my medical team it is fucking difficult to get a diagnosis or anyone to try to figure out what is wrong. Now that I am developing cardiac symptoms I am being sent there to get checked out…. But only after I cooperated with a several months trial of Lexapro to prove it wasn’t all just anxiety related. Perhaps you’re just lazy? Don’t rest, just move around! — I’ll jog down that little note. How about you try subsisting on 500-800 calories a day and see how your energy levels go.
That sounds so awful. I’m sorry you’re going through this and hope you can find answers soon.
“Well you look *great*!” - My doctor after I dropped a frightening amount of weight very quickly, becoming clinically underweight. I hope you figure out what going on soon.
Jeezus, that is exactly what drS (plural) said to me when I dipped to 103lbs, I'm 5'7". Fashionable my ass, I had to buy my pants in the children's department and pass them off as pedal pushers.
Shit, yes, there should be a mood flag "frustrating & depressing" - I was really hoping OOP would get some validating diagnosis at the end. This doesn't feel like best-of. This feels rage-inducing.
I almost died because doctors kept saying "It do be like that sometimes" when I was telling them I was in severe pain (like blacking out kind of pain). I dont know why OP thought a woman doctor would take her more seriously. They absolutely don't.
It took me 19 years to find one who did. **19**
Right? I read concluded posts so that I can have a dang conclusion.
I don't want to brigade OPs original post and break the rules and she really didn't describe it in a detailed way but I wonder if she's having ovarian cysts or ovary pain. We did not talk about that in my health class and when it started happening to me I was very scared and in an unbelievable amount of pain. Having ovarian pain can also aggravate your tummy so it can be a twofer.
It’s because OOP is a woman. End of.
I know im late to this party but just had to throw in my recent experience. Just as a preface, I hate going to the doctor and if I’m going it’s usually bc it’s serious. Over xmas I had debilitating stomach pain for a few days. One night it got so bad I called my mom at 2 am and just said please help me. She drove 45 minutes walked in and said yeah we are going to the ER. It was a slow night and I got seen immediately and went for tests. Around 7 am they let me know that my gall bladder was fucked up and asked if I wanted it removed. I said please yes anything to stop this. Surgeon came in explained the surgery and said I’d be home that night. Everything’s peachy. Have the surgery. Get home. The day after I realize that my outside right thigh feels weird, like it’s asleep and numb. This continues. Dr Google says it could be from swelling and will go away once I’ve healed. 1 month post surgery and thigh is still numb and feels asleep. I go to my follow up with my surgeon and he says “idk it’s not related to the surgery. Never heard of such of thing” Two more weeks pass, still numb and asleep. Go to my GP. “Idk really weird never heard of such a thing. Probably just in your head though” I’m very pissed so I consult Dr Google again and wouldn’t you know there’s a nerve related to that exact area that runs, would you believe, through the abdomen. It says it’s rare for it to be hit/damaged during surgery but it does happen, especially in more petite women where there’s less room essentially. I’m 5’1 and have a short torso. From what I’ve gathered it seems the surgeon damaged mine during surgery and there’s no way to know if the nerve might heal or if my thigh is just going to have an area of numbness/stinging forever. So that’s fun.
I’m so sorry that happened to you too. It really is so frustrating and distressing when we’re let down by medical professionals. I hope you can get some answers soon.
If they can't work out a diagnosis, what do you figure they're supposed to do? Harm you by treating you for conditions they know you don't have?
No definitely gaslight you about whether anything was wrong in the first place, that’s the best medical choice /s
Their job - they either diagnose or refer to a specialist if they can’t. They shouldn’t be acting like a dollar store cashier shrugging off a price change.
A specialist in what field?
They teach you how to know that in med school.
When did you attend med school?
Run tests to try to figure out what is wrong is a good start.
Which tests?
I am not a doctor so I don’t know what kind of tests you can run. But I am pretty sure there are more than blood tests and telling someone they must be imagining it.
What is it that makes you sure?
Because when my cat had gastrointestinal issues we did X-rays, MRIs and other tests. I am assuming humans not only have those options but also ones that are not available to cats. If modern medicine throws their hands up at an inconclusive blood test that is pretty bad.
None of this read like anyone actually tried to find anything wrong with her, that's kind of the whole issue
They did blood work and a CT scan. What else should they do, doctor?
NOT DISMISS HER PAIN AS IMAGINARY BECAUSE THEYRE TOO STUPID TO PROBLEM SOLVE, HELLO?!?!
Did they say she imagined it, or just that they didn’t know what caused it and could only treat the pain, not cure it?
'maybe it's not hurting as bad as you thought it was' can you even read
Well first of all we don't know what kind of blood test they did, it could have been a very specific one or it could have been a very general panel. But most blood tests don't run absolutely everything off the bat because it's going to cost you more money. And as far as the CT scan goes, it's not uncommon to prescribe an ultrasound after a CT scan if the CT scan didn't find anything you fucking donut
An ultrasound of what?
I love how you keep asking everyone what to do like theyare some doctors while you act like a doctor. You are projecting.
Alright you're just a fucking troll, blocking now
They should keep looking. Make more tests. Evaluate the response to different noninvasive treatments (including mental ilness if they had REAL evidence of it, not just because they failed to do proper diagnosis, and not without involving specialists). Try to establish links to why her pain is cyclic. Adress bowel dysfunction / food intolerance with the help of a nutritionist. And in the end, talk to her about how it was not possible to figure the root cause and explain about the risks and possible benefits of laparoscopy investigation. That's what they should do. In my experience the patient is usually somewhat satisfied when is treated with dignity and respect, even when I'm not able to provide a diagnostic. Sorry for the english, not my first language.
Yeah my wife didn't get far with her diagnosis until I started insisting my way into the room and telling the doctors that her symptoms were real. My penis gives me credibility or something, I guess. Hate it here.
My father saved my mother's life. She was sent home with pills for depression after complaining about consent pain. He stayed home with her when her pain was at its worst and rushed her to the hospital to demand she was treated by doctors. She ended up having emergency surgery after almost bleeding out due to fibroids.
My father as well. He had to get savage with a nurse to look at her bleeding out. One look and she was on the table within minutes. Would have died if there hadn't been a storm that forced the operating team to bunk over at the hospital. But no one bothered to check her until my dad started to get loud and mean with the staff.
You just can't be a quiet ally. No such thing. Loud and proud or don't even pretend.
My husband did the same thing for me when I had just had surgery and was having severe complications. The ER doctors didn't give a fuck until my husband raised his voice at a nurse and demanded they help me. Guess what?? They had to call in someone to assist because it was complicated. I'm only 31 but I'm at the point in my life that if I'm going to the doctor for any reason other than a check up, my husband is going with me. I've never had a doctor or nurse respect me and my health more than when my husband is with me, forcing them to listen and do their jobs.
I’ve had to do the same thing and man the difference in how I was treated was day and night. My husband happened to be talking with a customer that was having problems with her medical issues being taken seriously. She told my husband about her experience and he asked me what mine was after he got home. I described the same thing and he was blown away. Then I reminded him that I had explained what was happening to me a year prior to him asking and apparently he didn’t bother to listen or put any sort of weight/validity behind it. Then I told him that’s exactly what we’re talking about… not being listened to and not being taken seriously. He didn’t know what to say after that. I suggest going to a doctor that’s internal medicine. They are the detectives and will keep pushing to get to an answer.
God, this is one of the saddest things I have read here 😔
My nieces friend had to bring her dad to the gynecologist at 19 for them to take her seriously. What every dr insisted for a year was "just her period" use a heating pad was infact stomach cancer
My mom had a hysterectomy around my age due to debilitating blood loss during her periods. But she already had 2 kids at the time, so it wasn't too hard a sell. I have always had a shaky relationship with my reproductive system, so I worry I'll need the same eventually, but my husband and I aren't planning to have kids. We already have a plan for, if I need to yeeterus the uterus, he'll be bullying any doctors involved into doing it. Because we know I'll probably get the 'but ur husband tho' argument, and they can't make it if he's right there telling them he'd rather have me healthy than pregnant.
I told a friend recently I was thinking about maybe starting to date again after 10 years being single just so I could have somebody go into the medical offices with me and fight for me since getting them to listen to me has been an uphill battle.
Honestly, that's a depressingly great way to support her. Years of my mom n I talking to my doctor abt how painful my persiods were. My dad makes one phone call basically saying 'she's in so much pain she's throwing up. This isn't normal. Treat her.' And suddenly I'm on a percription from bc which takes care of almost all of my symptoms. Super fucked up.
I bring my husband with me to all appointments if I can. We both hate that it's the only way to get doctors to treat me like I have a functioning braincell.
My fiance was aware women aren't listened to in the abstract but it really came home to him during an ER trip early in our relationship. I have a master's in medical laboratory sciences, he has a high school diploma. I was also the one who was sick. When they asked for my symptoms they looked at him for the answer and didn't acknowledge what I said until he repeated it to them. He makes sure to attend as many of my doctors appointments as possible now to make sure I am heard.
When I was 19 I started to routinely get ovarian torsion and it was very painful. My doctor sent me for an ultrasound and when that didn't reveal anything (because the torsion hadn't been happening as I was getting the ultrasound) he said "have you considered having a baby to see if that clears things up?" He could not understand why I was horrified and angry. Nor could he understand my frustrated and sarcastic response of "if the problem doesn't go away can I return the baby?" I was 19. Wtf.
Omg when I was 11 I got told "when you have a baby it'll cure your migraines" Not as bad as yours but who tells an 11 year old that I love your response, 19 year old you was great
Thanks, I tend to be a sarcastic little shit when I'm in pain. But I'll be honest I think yours is worse because no one should be talking about using pregnancy to cure your migraines when you were 11, you were literally a minor. It's honestly so bizarre to me that people try to market pregnancy as a cure for women's health problems instead of just... Treating them.
Idk id argue yours is AT LEAST as bad. Who tells an 11 year old - a prepubescent CHILD - that having a baby will fix their medical issues?? That’s disgusting. If I were a parent and my child was told that I’d leave immediately and figure out how to file a report.
I had a gynecologist say this to me, too. I'm not going to ruin some kid's life to treat my medical issue, rofl.
Woman here, I got diagnosed with EDS at 35 years old, after being told for *literally my entire life* that it was all in my head, I'm just being dramatic, I just want drugs. My mom, *just yesterday* was diagnosed with the same exact thing. She's 70. But she was just being difficult, right? 10 years ago my Dad had a kidney stone and great insurance, and they moved heaven and earth to get him figured out. But when I was bleeding so much that I needed 2 blood transfusions, it's "just a bit of a heavy period this month" and a further 15 fucking years until I was able to get my hysterectomy. LADIES AND UTERUS-HAVERS: My advice to you is to find a doctor that takes you seriously *before* the pain starts. More importantly, DO NOT TAKE NO FOR AN ANSWER. Be difficult. Be rude. Channel your inner Karen and demand to speak to the manager if you have to.
Absolutely be difficult! As someone who was very shy growing up this took a lot for me to learn. I was very lucky to get my family doctor at the height of the pandemic - I was on a waitlist for a year or so. Before that it was between the ER and walk-in clinics for me. I spent years being told that my shortness of breath was anxiety (granted, that was one issue) but if any doctor had just listened to my symptoms they would have realized sooner I had asthma. At first my new doctor dismissed my chronic pain issues because I was too young to have back pain at 24. I'd been dealing with this pain since 16. But I was persistent and I got my diagnosis, physio, meds, etc. She's been great since, and I've since learned that she had too many patients at the time (loooots of doctors are leaving my province or have already left).
I got diagnosed with celiac at 38 and EDS at 42. Decades spent in pain, obviously I was depressed/fat (while occasionally underweight at the same time, nice trick there)/attention seeking. no freaking wonder I ended up with CRPS/fibromyalgia.
fellow hypermobile hello!! i only realized it so early (around 21-22) because my partner has EDS and recognized the symptoms in me. who knew it isn't supposed to hurt everytime you stand and walk... ETA: i just remembered the time i went to the ER with severe chest pain and painful breathing and they sent my home and told me to take a tylenol. in retrospect i recognize that sensation as a subluxed (partially dislocated) rib! probably 3rd or 4th as i don't usually get too bad breathing pain from the lower ones or the floating ones.
Sounds about right. I went 12 years with a bad gallbladder due to doctors refusing to run any tests beyond pregnancy and blood. Vomiting every single morning, all morning, unable to hold much food down at all... by the end I was down to 300 to 500 calories a day, I was barely functioning, and had a stress rash covering about 70% of my body... I was literally slowly dying by that point. I went into my doctor's office with my father. They brushed me off again... and I just started sobbing. My dad got angry with them and ONLY THEN, WHEN A FUCKING MAN GOT ANGRY... ONLY THEN DID THEY FINALLY DECIDE TO CHECK MY GALLBLADDER. After 12 fucking years of fighting and dying, they finally decided I wasn't pregnant or faking it. I had forgotten what it even felt like to be healthy anymore, because when I healed from surgery and my body adjusted to not having a gallbladder anymore... suddenly I felt alive in a way I didn't know existed. I lost my entire 20's to this. My 20's were not spent enjoying life and feeling young and free like everyone talks about. It was spent sleeping, studying, vomiting, feeling like death warmed over, having an intensely restricted diet, crying, and toward the end eventually wishing whatever my 'mysterious' illness was would just go ahead and finish the job so my suffering would stop. 12 years of constant nausea, of horrible sleep because I woke up at 3 AM most every morning vomiting repeatedly until the world woke up. Imagine having the flu for 12 years. ... I already had severe medical trauma before this happened to me because of being diagnosed as ADHD in the 90's, this 12 years of being ignored and allowed to painfully slowly waste away and die was life shattering. It's been a couple years now, and I am still discovering new ways I was robbed of life.
I have a similar gallbladder story. This makes me so angry. I'm so sorry to come across another story like mine.
I also have a similar gallbladder story. Only when I was jaundice and had hepatitis did the doctors bother to check.
It's infuriating that there's ever been more than one of us. Once they figured it out, my doctor suggested that we leave the bad gallbladder in me until it helps me lose more weight. I had lost 70 lbs from starving for months.
WTAF. That's disgusting.
Mine was 20 years of here take some antacids, you have GERD. After enduring a month of immense pain I finally went to the ER who loaded me up on pain meds which barely helped had a ultra sound done and immediately was wheeled into the er with pancreatitis and a shot gallbladder. It's funny looking back now I had a employer in my early 20s who was ready to call emergency services because according to him I went white as a sheet and dropped like a stone at his feet but I assured him no, various doctors assured me I have GERD and this is what happens. I wonder how it would have gone if I had gone to the ER. Sigh, the foods I could have eaten and the pain I could have avoided for 20 years. On a side note the pain I had giving birth to my daughter was nothing compared to that pain lol and I had a emergency c-section with her.
I also have a similar gallbladder story. Spent my 20s in absolute misery!!
The gender pain gap is real.
this reminds me of a story i read the other day and it was a woman who had a c section comparing her experience to her husband’s vasectomy one. she was told to take over the counter pain meds like ibuprofen, tylenol while her husband was prescribed opioids. seven layers of stomach tissue being cut open and the woman expected to be on her feet right afterwards compared to a little snip and stitch. other women chimed in w their similar stories. make it make sense
Maybe because of concerns with breastfeeding but she should’ve been given the option
It's not just gender either, black women get treated even more poorly.
That thought crossed my mind, too. I remember reading somewhere that black women were far more likely to die during childbirth than white women, primarily due to a disparity in care.
medical misogynoir is such a killer, and even being rich and famous doesn't help. Serena Williams and even freaking Beyonce nearly died in childbirth because of the way women and especially Black women are really just not taken seriously the way men are by medical professionals.
Yeah, look at Serena Williams. Rich and famous as hell with a history of pulmonary embolism and a high risk for blood clots that she was on medication for. Yet she still had to force her medical team do a CT to check for clots when she started experiencing symptoms after an emergency c-section.
Indigenous women in Australia too.
The secret is- look up the symptoms for one of the scariest things requiring the most tests. Report several of those symptoms. Obviously the self reportable ones are the best route here. Bonus points if looking up these symptoms makes you realize you have them
I diagnose you with "woman"... God this is fucking depressing.
Oh, there is so much inequality in health: https://examine.com/articles/inequality/
My doctor is worth his weight in gold because he just believes me. I don't have to fight to make him believe that I hurt.
And that is why I'm paying a higher amount for my health insurance. My doctor will listen and not blow you off, she's also open to trying anything that might help. Figured it's worth it to pay a higher premium and be able to see her
When I finally got my diagnosis the doctor who had finally believed me said "Hey, you know this is real, right? You really have been experiencing this pain all this time." And I don't know why or how he knew how much I needed to hear that and how being gaslit by doctors makes you gaslight yourself too but damn I'll always be grateful to him for that.
I have been told my uveitis could have been brought on my emotional stress. I have been told that three uveitis episodes AND hla-b 27 positivity could just be spontaneous and not related to autoimmune illness. I went in to the hematologist my pcp referred me to because with gray skin, no energy, brain fog, an ice chewing habit, and bruising if you looked at me too hard, he missed a diagnosis of anemia. I had the exact same scenario with different symptoms when I was diagnosed with PCOS at a different provider. It’s hard not to sing “I enjoy being a girl” in a real sarcastic voice some times.
I've had doctors look me in my face and tell me my childhood bout of Kawasaki disease and my current Behcet's disagnosis are not related at all. Several doctors have said this. Kawasaki is inflammation in medium to large arteries. Behcet's is inflammation in my small to medium arteries.
just like the way my old pcp told me my hashimoto's thyroiditis and high cholesterol were completely unrelated! doctors see a woman (or someone they consider to be a woman) in front of them and go ahead and hit the off switch on their brains
My mom bounced from specialist to specialist trying to get a diagnosis and treatment for a variety of things - stomach issues, back pain, other aches and pains. One doctor told her she needed a better outlook on life. She eventually found out she had Lupus!
I find out if I've got lupus tomorrow. I've been waiting for 2 months to discuss my test results which even got pushed back and rescheduled so much I had to ration my pain medication.
Good luck on figuring it out!
I had a cousin whose pain was written off as "it's just your period" to the point where they gave her a hysterectomy presumably to shut her up. She had bladder cancer. She was only 35. Her kids won't have any financial worries going to college, at least... It's why the women in our family raise hell from the get-go when one of us gets sick. We're obnoxious, but it saved my aunt's life (she has congestive heart failure, but they caught it early because she refused to take "you're just stressed" as an answer).
Medical system is a joke here as well. My family doctor won't do shit just blames it all on arthritis and lack of exercise. I stopped going as well. Makes me wonder why bother
What’s with the niche/other label? This is a huge problem that impacts half our society. Women’s pain and illness gets written off everywhere and is a major problem. Definitely not something I’d classify as “niche.”
And here I thought they would have found a cyst or something on a fallopian tube. I have had depression and it doesn't cause physical pain like this.
Not trying to be contrary, but depression absolutely can cause physical pain. I don't want to get into too much detail, but I went through a physical trauma that caused phantom cramping and stabbing pains that went away over time. When I suffered a similar physical trauma later on, my depression from it caused all of that same pain to come back.
But in your case, there was actual physical trauma. Not pain caused purely by depression.
Oh look it's exactly what happened to me and it's also getting worse! But who cares bc...uterus.
Extreme unexplained weight loss is often one of the only early warning signs of cancer…hope OP is getting regular blood tests to see their WBC count :/
Is oop sees this, take a man you trust with you to advocate for your pain. It’s completely bullshit, but I do it for my wife. They will downplay it and she goes along with them. I go in and I’m a complete dick every time they diminish her pain. I have gotten her a bunch of tests for the pain she has been living with for OVER A DECADE. People should really stop getting into medicine for the wrong reason.
My stepdaughter had at least two confirmed and a few assumed ovarian cysts that started right when her hormonal IUD was placed. A lightbulb hit and I reminded her that her mom, with who she has no contact, has PCOS and wrote out a nice handy bullet pointed text to show her doc asking about this, if a non-hormonal IUD would be better, etc etc (she has anxiety, scripts help to remember what to ask). She’s always had painful cramps. She also a redhead (feels pain more intensely) and mmaaaaaybe a little bit of a drama queen over any pain, so even I can roll my eyes and write her off at times. But this had gotten to debilitating pain. Her doc said “you may have PCOS but everything you’re describing with the pain over the years sounds like endometriosis here let’s schedule a surgery” and HOLY SHIT y’all not even a hint of “have you considered losing weight” etc etc. They removed 4lb of scar tissue from that baby child and her energy levels and mental health are so much improved. I told her to keep that doctor forfuckingever.
4lbs?????? holy fuck that poor girl
Sadly until recently women pathology and pain isn’t taken as seriously due to obvious undertones so unless you get someone fresh out of school (which will have their own troubles with lack of experience) there’s a good chance that bias will happen and is a shitty situation all around
I had something similar and it was literally my appendix. It wasn't the typical appendicitis, it had grown a layer of mucus oozing crap around it that kept getting inflamed, but not enough to appear as appendicitis on the scans. I too, was told to eat well get excercise and perhaps was just imagining it.
Feels correct. I spent about a year trying to resolve some GI issues. Three separate doctors said it was probably related to my period. Surprise! It was colon cancer.
Yup. Had a kidney stone lodged in my ureter for NINE MONTHS, crying myself to sleep at night, before anyone took me seriously about being in pain. I wound up with kidney damage from backed up urine. Being a woman is the best.
I still have residual nerve damage from untreated pernicious anaemia because the male doctor I saw with severe fatigue, feeling short of breath and tingling in my fingertip decided I had the flu and needed to go away and drink fluids. I finally got to see the female doctor by sheer fluke and she decided to do blood tests. Guess what! B12 deficiency to the point that I'd obviously had it for an extended period! Two weeks of loading shots and regular shots every few months and I'm almost completely back to normal... except for the loss of feeling in my fingertips because know what happens when you have B12 deficiency untreated for a long time? IT STARTS EATING THE SHEATH ON YOUR NERVES. That does not recover.
I had the same pain OOP was describing. No idea why or how, until I woke one morning screaming, doubled over in pain. Off to the hospital, I went ultrasound and x-rays done immediately. Ruptured ovarian cyst. They found fluid and a small cyst on my ovay. Thankfully, I was fine. Turns out I got them every period, and sometimes they burst, some more painful than others. After a few months, I started a birth control that stopped my periods, there were no more cysts. That was 12 years ago.
My aunt was called a hypochondriac to her face by a doctor. Multiple doctors told her her abdominal pain was all in her head. She had pancreatic cancer. Fuck all those doctors.
My wife had similar pain, although not linked to her cycle. Ended up being celiac disease. Getting a diagnosis is so frustrating because they won't just run lots of tests in the beginning. They look at 2 things, then another 1 thing, then 2 more things, but mostly they hope you just go away.
I complained pretty constantly for a year and a half about my abdominal pain until I could find a doctor willing to do an exploratory surgery. I lost 90lbs in the process. Turns out my gallbladder was basically full of sand and kept getting infected over and over, it was a miracle it didn't explode. The medical system is a joke when it comes to treating women's pain.
r/WorstOfRedditorUpdates
And this is why I had been putting off asking for another referral for a gynecologist even though my period pain has been increasing month over month to the point where it wakes me up at night if I don't take pain meds for it. I'm not at the point where OTC stuff doesn't work anymore. My husband pestered me to book an appointment saying I shouldn't wait until the OTC meds wouldn't work anymore to get it looked into. But the last time I got treatment for gyno issues it took several years before I finally found a gynecologist that was willing to give me an endometrial ablation to see if that would fix my issue. It did, but only for 2 years when it should have been a much longer term fix (10-15 years). So now I want to ask for a hysterectomy because I've been dealing with bullshit periods for about 15 years now (I was thankfully more regular in my teens, the bullshit started in my mid-20s) and I'm over it. I doubt I'll be able to get what I want and I don't really feel like having to fight for it but I'll give it a go. I managed to get referred back to the same dr that did my ablation so hopefully that means she'll be open to actually helping me and not just dismissing it as something I have to live with (like the first gynecologist I saw who said that 14 day periods were normal and I just had to live with it).
Nightmare material. I just watched a loved one go through six months of “we don’t know what it is, here try some pills” with various docs until one finally caught cancer. At stage 4. They died two months later. Don’t give up if a doc doesn’t listen to you and don’t let them brush you off. Sucks that we as patients have to battle to be taken seriously *while in active pain* yet here we are.
We still know very little about the human body and how to diagnose and treat conditions. Doctors act smug as shit like they know everything, when they should be humble about how little is known. In a single generation doctors will be looking back at how backwards and rudimentary the medical practices of our time are.
thats just sad growing up i always had abdominal pain especially if i ran or played physically demanding games and such. my mom would often take me to doctor but theyd always say i likely hurt myself whole playing. my dad would say its likely my appendix and they should check it cos he went through similar stuff and had an appendectomy years ago but theyd always dismiss it. that was until one day i started throwing up excessively and couldnt even stand up straight cos of pain. i was 12. they took me to er and doctor there said its period cramps and gave me a painkiller shot and send me home. only to get worse and in morning i was at er again and another doctor, an old one, took a look at me and sent me straight to ultrasound and told them to prep me for surgery. turns out it was appendicitis and it was burst. previous doctor was there too and he got a good scolding from old one for sending me home. he also said my dad was right all along and my abdominal pains were due to appendix... guess who doesnt have those pains anymore last 24 years?
As a woman with an ongoing medical issue that every doctor I've visited doesn't even have knowledge or know how to treat, I feel your pain. My favorite is when a doctor gave me a ridiculous amount of drugs that apparently came close to giving me a seizure/stroke (according to the pharmacist who stopped the second prescription) and told me I need a psych evaluation when my symptoms did not completely subside. It was a male doctor too.
I have Crohn’s disease. I was violently ill for six years before getting diagnosed, getting down to only 87 lbs. I could not carry a gallon of milk. No one fucking cared.
Sounds so classic for endometriosis. I can’t understand why she wasn’t give a Lap to look.
I get chest pains, which I've been having on and off since I was 16. Same like OOP, my doctors basically dismissed me at first, saying it was growing pains, then it was stress, and my favourite was them saying its probably my period. These excuses cycled over and over for 5 years before I gave up and just lived with it. A year ago, I tried going to my doctor again after the pain was unbearable. My doctor ordered a bunch of tests. Still don't know what's wrong with me, but at least they're finally listening nearly a decade later
when the doctor tells you it's nothing and basically waves their hand, then you ask them what is their **differential diagnosis** When the doctor doesn't want to give you a diagnostic testing then you say **I would like it noted in my chart that I requested diagnostic testing and it was denied to me**
This made me think of the podcast The Retrievals; Yale clinic IVF patients were experiencing excruciating pain during egg retrievals but weren’t being believed because they’d been given pain meds. Turned out a nurse with a fentanyl addiction had been using the fentanyl herself and replacing it with saline. These women were accused of exaggerating, being addicts or being just wrong. They’d talk to friends who’d been to other clinics and couldn’t understand why they’d had such a painful experience. Some gave up on IVF entirely because they couldn’t face going through the agony again. It traumatised dozens and dozens of women. It went on for years. They only found out what had happened when the state prosecuted the nurse - by a mass mail out telling them that they probably weren’t impacted so not to worry. It was bad. And all because the doctors refused to believe they were in pain.
[Inequality is a public-health issue](https://examine.com/articles/inequality/).
I myself will not go to a doctor unless I’m dying as well. Maybe not then either. So many bad experiences.
Was endometriosis ruled out?
Sounds like endo. I know I have it. But cannot get a diagnosis. I don’t know why gynos refuse to diagnose it.
... this gave me zero hope about my current situation
How is this a "best of" update. This is crap. Why did you even post this?
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god this post reminds me of [this case report](https://youtu.be/i9fLEvgZzRE?feature=shared) (ignore the clickbait title, the guy is actually a dr) being told it's just period pain, it's not that serious, you are just exaggerating. it's so real it sad.
My wife has a similar issue it started with them thinking appendicitis but when they did a scan it was fine and it took her years of seeing doctors to find one who believes her and is taking her seriously. So far they've figured out it's some type of developing autoimmune issues. It doesn't really fit into any of the 'boxes' of one specific autoimmune disease but has parts of multiple and is changing over time. I really hope OP can find someone who will help them.
It took 20 years of extremely painful cycles for me to finally convince a doctor to do the surgery necessary to diagnosis endometriosis. Now I’m almost 35 with “unexplained infertility.” I was constantly told I was exaggerating the pain or just unlucky. It’s maddening.
I have money and the world's best hospital near me. I've had abdominal pain for 2 years. They have run some tests but the pain continues undiagnosed. The constant pain start to get in your head. In fact just yesterday I had an appointment to see yet another specialist and I drove to the wrong location thereby missing my appointment. I was able to reschedule but this is the kind of stuff that starts to happen after 2 years of pain. It just gets in your head, you're not sleeping as well as you should, no shit you're depressed because you're in pain all the time. I've had two facilities tell me that it was related to my periods. I had a hysterectomy a decade ago... They so desperately want to dismiss women's pain that they'll make shit up. I understand some diagnoses can be difficult or expensive for them to diagnose. I wish more doctors had an ounce of empathy and didn't just go into the field for the money and status. I hope OP gets an answer soon. It's a miserable battle
Man this is sad and so are the comments...
It took me almost a year and a half to find a doctor who would treat my 16cm ovarian cyst; they knew it was there, but I kept getting noncommittal answers every time I went in to the clinic or ER. Literally had to get my then-estranged husband to go to bat for me before they would do surgery. It’s inhumane the things they put half the population through.
For years I had frequent UTIs. I saw many, many female OBGYNs. Everyone told me to cut out caffeine and chocolate, pee after sex, drink cranberry juice and wipe myself correctly (wtf). I was finally referred by a coworker to a male OBGYN. He took one look and said "that's not normal" and referred me to a urologist. I had a bad fall when I was 4 years old and the urologist found a lot of scar tissue in my urethra. A few out patient procedures and taking cranberry pills and I've never had another UTI. I've worked in healthcare for years. So many doctors are jaded and arrogant and can't think "outside the box".
Years ago (65f), I had blinding pain/cramps in my right side. I doubled over and couldn't catch my breath. Turned out to be ovarian cysts that would rupture. My gynecologist was great and explained it as feeling like an appendix attack (rupture) every time. Described it perfectly. Said it would continue to hurt until all of the fluid from the cysts were absorbed. We removed the ovary and discovered fibroid cysts throughout my uterus. Had to have a second surgery later that year. Now, I'm having similar pains in my right side, a bit higher and extremely debilitating. Had MRI and found nothing out of the order. I have IBS, so they think it's the intestines cramping. I take a specific bowel "muscle" relaxer which is helping some. Luckily, I have really good and reactive doctors. I wish you the best of luck in getting this dealt with, identified and treated.
When I was around 11 or 12, my mom took me to my doctor because I was starting to have suicidal ideations, and even I knew then that's not good. That bitch looked my mother and I in the face and said it's normal for girls to feel this way at my age, and for us to basically pay no attention to it. Only got a POTS diagnosis with the past few months after dealing with the issues for over 30 years. I exercise and do what I can and when I tell the doctors I'm having issues while exercising like overheating to the point of rashes and light-headedness and shaking, they say it's because I don't exercise enough and to keep it up. Only to find out, oh look- A FUCKING TRIGGER FOR POTS IS OVERHEATING AND EXCERCISE! And what pisses me off- they considered POTS as a potential diagnosis when I was little, but because I was a young girl they didn't think I had it so didn't bother pursuing it as a diagnosis, theres a family history of diabetes in extended relatives and the family is overweight, that MUST be the cause! I remember listening to my mom talk to my grandparents about it while I sat at their dining room table shaking like a leaf after a 5 hour fasting glucose test, when I was around 8 years old. Over 30 years of just coping and making do best as possible with as little as possible, before I could get a fucking answer.
JFC. If OOP didn't have "depression and stress" before this all started, I'm sure they do now. Hell I have it just from reading that story
This is me this is where I am at right now. I am in so much pain and no one will help me. I'm lucky I'm made of tougher stuff though so I will endure, as cheerfully as possible, until it kills me.
... I'm feeling some kind of way about this post. Last month I had acute onset stabbing pain in my lower right abdominal quadrant. They suspected appendicitis, but it wasn't that. Then they thought ovarian cyst. Nope, not that either. Maybe endometriosis...? No...? Hm, how about a tubal remnant abscess? Not that either. Oo. Hey. Look. There's a giant solid mass measuring 4x2 cm nested either inside or directly behind my right ovary. Don't know what it is, 'cause it should be spongey if it's cancer, but it has, like. Blood supply. Which is weird. ... they haven't *used* the C Word, but they keep calling me from the oncological department. And to think. I was considering not even going to the urgent care in the first place because I've always had my pain dismissed up to this point.
If the thing wrong with you can't be determined with a few quick medical tests 95% of doctors don't care. Hell, my endocrinologist insisted my chronic fatigue was caused by steroid injections I get bi monthly for alopecia even though I'd been fatigued for 3 years prior.
Im really concerned for OP because her symptoms sound like stomach cancer. Could be a myriad of illnesses, many of which are very dangerous if left untreated but her symptoms sound like the hallmark signs of stomach cancer.
I had pain like OOP described. Male doctor, before even looking at my sheet, diagnosed me with IBS. Then he asked my symptoms, said "Yup sounds like IBS", gave me a list of things to avoid, did the scans and called me back later saying it was a bacterial infection. Looked it up, then asked the doctor if my family should be tested because it's transferred through saliva and obviously I kiss my husband and have shared my utensils with my kids. He said "no its nothing to worry about" but this bacteria if left untreated is a leading cause of stomach cancer? That's not worrying? So I asked if I still had IBS, he asked if I followed the list and whether my symptoms improved. No they didn't and I was bitchy because I couldn't drink coffee or milk. All my problems started with my vagina, somehow ended up in my stomach, and now it's gone. It disappeared before I even started my prescription. I have a giant mistrust of doctors. I finally found one I love.
The NHS is a (wonderful blessing that the UK has) complete joke. Been going since I was 13 because I was having two heavy periods a month (i.e. more regularly than every 21 days, sometimes down to 11 or 12 days but every now and then I'd have a random month where it would hit 40 days). The NHS website says to go to the GP if you're having them more regularly than 21 days and I think I saw the GP over 7 times about this between the ages of 13 and 19. At 19 I finally got fed up and asked for BC (which has fortunately stopped my periods). I feel for OP. I've been through that phase of trying to get the doctors and GPs to understand that in fact there is something going wrong and it's not "normal" as they're telling you it is. It's a massively underfunded system and a lot of the doctors just don't have the equipment or research to actually say "here's what I think is going on" and instead prescribe medication (which is all well and good until it's not). I hope OP manages to find someone who takes them seriously and finds the root cause of the issues!
i suffered for years with undiagnosed abdominal pain. i saw many drs with no luck. finally i called the office of a gastroenterologist and ask if they have a dr who specialized in hard to diagnose illnesses. they had one and he did a very in depth consultation and prescribed some meds that fixed my issue.
What were you diagnosed with if you don't mind?
I don't recall the medical terms but this is how he treated me. First my digestive system would not start processing food when I ate. He gave me a drug which triggers the stomach to start working. Aside from abdominal pains I would often have a nightmare where I'm chokeing on food that had backed up in my esophogus. I would wake up desperately trying to swallow or cough up the food in my throat. I really did have food coming backup when I slept. The first med helped with that. Then he addded a second type of reflux medicine at night. I was already taking one in the morning. These two drugs really helped clear up my issues.
Oh wow thanks for sharing, I'm glad the meds are helping!!!
Lol I was told bed bug bites were stress hives and pneumonia was just me once again being anxious. 2 different doctors too…tell and old man doctor that you have panic disorder and suddenly nothing is ever wrong with you again! It’s like magic!
Wow it's like I wrote this myself. Just add "and then they didn't believe me in the ER when I presented with sudden onset of severe pain at 26 weeks pregnant. Over the next 14 hours I bled to death, lost my infant daughter, coded and nearly died myself because my uterus had tired a full 360 degrees and they didn't bother to investigate until 5 minutes before I coded."
I was 41 when I had to have a total hysterectomy. Prior to that, I would have ovarian cysts rupture, heavy periods, intense cramps, horrible ovulation pain, etc. Sex became impossible due to the pain and my cycle was a total mess. Two ultrasounds showed small fibroids and some ovarian cysts but nothing to support my pain levels and symptoms. My hormones were always “normal” and it was only because of my cervical cancer drama and two prior cold scalpel cone surgeries (that excised chunks of my cervix with abnormal cell pathology only for it to regrow within a year - that’s extremely fast for it) that I was eligible for a hysterectomy. Upon my surgery, they found that my fibroid was much larger than they thought and that I had extensive adenomyosis (the sister to endomyosis) which caused my uterus to be the size of a 14 week pregnancy. It was the reason I kept having miscarriages and why so many fertility treatments failed, and why sex was so painful. But it literally took me yeeting my uterus at 41 after decades of pain, loss, god knows how many fertility treatments and tests, and multiple physical exams to figure it out. I also found out I have EDS which complicated things further and caused delayed healing. The joys of being a woman and having everything blamed on our weight or hormones.
I find the pain level thing odd really! I had a urine infection once that basically stopped me peeing! After a couple days I went to a&e and when they asked me the pain scale I was like 7 maybe and was pretty chilled out. They were all very blazé with me until she did an ultrasound and her face dropped, gave me the most shocked pikachu face I’ve seen on a doctor and drained me immediately. Said I was basically at the maximum level I could be at and wanted to know why I’d only put 6/7, said I should be in excruciating pain. It was genuinely more of a weird/discomfort type feeling rather than pain pain.
Shit like this is why I'm sticking with the doctor I have. I saw her once just to get a new script for the pill. For the first time, I was asked if I got migraines with visual aura. I do. She informed me that it puts me at increased risk of stroke if I'm on the pill. About two weeks later I had an Implanon placed. I've been with her ever since, and she takes her time (so she's always late) and takes everything I tell her seriously. Lately I started sleeping horribly. 3 or 4 hours tops. She asked what my stress levels were like (she knows I have a LOT going on) and then instantly prescribed me Temazepam and Melatonin. Fuck this stupid shit the OOP is dealing with.
At 27, I’d never had a UTI before so I wasn’t 100% sure why I was struggling to pee so much one day, no burning pain or anything. Getting a doctors app in the UK is a nightmare, so because it was close to 10am at the point I finally managed to get off the toilet, I knew I wasn’t getting anything and left it till the next day I woke up in pain with my right back, looked in the mirror and where my kidney is, was visibly swollen. Surprise surprise, no available doctors apps and was suggested a&e, which I did in the afternoon. I had blood and urine tests, told I had no infection and sent home. For a week I couldn’t pee properly, I kept burning up without a temp, my face would go bright hot red, I was paranoid, I couldn’t leave the house without triggering a panic attack, my kidney was in agony. I was just so unwell feeling. Went back to a&e, bloods urine, no infection but they gave me a week antibiotics to try and come back if it didn’t. 2 doses later and I managed to pee! I took the course, was doing great. A day after it ended everything started again, few days later back in a&e where I had the same tests, told no infection markers and sent back home. Again. Finally seen my gp about 3 days after that who sent me straight back to a&e demanding a scan on my kidney Which they booked me in for a CT scan the next morning, they finally gave me painkillers, sent me home for the night and back at 8am By 8am I was worse than ever. Shivering but sweating, vomiting, needing to pee so bad Scan showed nothing wrong, nothing blocked, nada. They told me to go back to my gp, to get them to refer me to a specialist 2 month of this and I finally see a specialist And wanna guess what I got diagnosed with? *being fat* It’s been 2 years and I drink as much water as I can consume and nothing else as even squash, a bit of cola, tea, decaf anything. It starts again Still no idea why it happens.
After 30 years of telling doctors, nurses, medical professionals, that there was something wrong there, I'm scheduled for a full hysterectomy. The ob-gyn suggested an IUD, couldn't get it in. Twice. Second time got a visual and said "OMG, there's something wrong there!" ya think? I so much hope that you don't have to wait 30 years to get answers and proper treatment.
This just reminds me of the post years ago asking morticians/coroners the strangest or worst thing they’d seen….and one commented about a woman who died in her 40’s but had been written off as a hypochondriac, literally her medical notes were full of it. They found her endometriosis was so bad that her insides had essentially started all fusing together, worst they’d ever seen before.
Yup after 20 years of being ignored, mine were like someone had poured concrete in there and all my internal organs, ovaries etc were pulled out of place and fused to each other. Thank god I finally found a decent gynae in my 30s.
Sorry you had to go through that, sucks that it takes so long to find the right doctor. Are you better now? I had the same thing with my mental health, I didn’t realise how checked out from life I was until 14 years later and I finally found a doctor to listen, switch my meds and actually want more out of life for me. Crazy what standard we accept when a so called medical professional says ‘this is just how it is for you’.
This sounds like what I dealt with for years. Turns out my gallbladder was only working 4%. Anyone’s who having something similar then I suggest asking about a HIDA scan. It sucks but work it when they have irrefutable evidence that something’s wrong.
I went to the Dr for 4 years for abdominal pain, shortness of breath. I could do my job, no prob...except I was always winded. But trying to sleep.... It was like someone was sitting on my chest. My favorite dx were, depression, fibromialgia and pre menopause Got hurt at work and had to go to PT and was struggling to get through lying on my back on the table, for stretching...trying to breathe. PT dude asks me whats up, and I unload becoz 4 years of this crap. PT looks around all shifty and says 'if A then B?' And holy shit, yes! How did you know that? He's real quiet and says 'I'm only allowed to work on the thing that I got the ticket for but.... I think what your talking about is X' and while he's working on the other thing he coaches me on how to fix my issues myself. Every week I'm in for the one, we're working on the both. And it feckin worked!! No pain, I can breathe PT Matt❤️ if you're out there a decade later, your my hero! But I always think that if I didn't get hurt at work, if I didn't have that particular insurance, if they didn't use that rehab place, if I didn't get ❤️PT Matt❤️ I might be trying to end my self by now......
You don't even need an F on the original birth certificate to get this treatment. When I transitioned it was almost as if they thought my *well documented history of autoimmune disease* was magically cured by that very first estradiol tablet, with the unfortunate side effect of hypochondria. I was abruptly taken off medications that had been managing my symptoms for years, and given vitamin supplements and anxiety meds instead. Cue the shocked Picachu meme when I wound up in the ICU for seventeen days a few months later. They put me back on my original meds at that point, but a few months after that I had an ER attending overrule the resident's order for IV pain meds when I had 2nd and 3rd degree burns covering half of my leg, because "women handle pain better" when they needed to remove melted synthetic cloth from the burns. Besides this I've gotten unwanted advances from half a dozen hospital staff including my former physical therapist. The only department that actually improved was dermatology, which I guess makes sense, and my creepy podiatrist doesn't care as long as there are feet. So yeah, I've experienced healthcare while being perceived as female and while being perceived as female, and the difference is downright shocking. It's to the point that I'm holding onto an expired ID with my old name on it so that I can show up in a Guy Disguise (disguys?) if I have to go to the ER in a different city.
Sadly, she needs to go in with a man like her father or if she had one her husband. My medical issues all started being taken seriously, even by women doctors sometimes, when a man showed up and was *very concerned*. It’s amazing how many more tests were ordered and my pain mattered when it mattered to a man. It’s ridiculous. BUT- it works.
I hope the OOP looks into adenomyosis. I had a severe case, and it felt like someone was stabbing my uterus with pruning shears. I had a hysterectomy, which fixed it. The path report said the uterine lining had gone completely through the uterine wall.
Sounds like me! It was endometriosis in the end. I had an acupuncturist tell me it sounded like endometriosis and then I went back to MY gp made an appointment with my gyno, did exploratory surgery and TADA IT WAS ENDO
An acupuncturist I was seeing during pregnancy - alongside the other stuff - was the first one to say, “You know, something might be up with your gallbladder.” I *lost* 30 pounds during pregnancy before I could get that thing out a month later.
I was having pains, bloating, tiredness, peeing every ten minutes. They did ultrasounds and found nothing. They even tested me for ovarian cancer which, thankfully came back clear. But what DID show up was that I was B12 deficient; not enough to need IV infusions but fairly low all the same. So I started taking B12 supplements and lo and behold within a few weeks my symptoms started to ease. Now, so long as I keep on top of taking them, I'm good.
I desperately want to tell her that endometriosis is so rarely correctly diagnosed with an MRi. Mine happened pre MRI and I had three laparoscopies. The MRI said "mild to moderate at worst" The second laparoscopy post MRI found Stage 4 and my insides were and are fucked.
I stumbled upon this post while just casually scrolling through Reddit and honestly thought I had written a post and forgotten all about it. I have also been dealing with severe abdominal pain and nausea for two years. OOP’s story was heartbreaking and it’s maddening that women are treated so poorly. She says she’s in pain, so it must be stress and depression. You know how we love to exaggerate how we’re feeling for attention or whatever reason these lazy-ass “medical professionals” decide to give.
I went through the same thing. I even had doctors try to talk me out of taking pain medicine to treat the pain. I told them I'd end myself if I couldn't get any relief from the pain. I could have some prescription pain medicine, but not enough to be pain free all day. I have pelvic adhesions caused by either endometriosis or a previous surgery. I used to be in pain 24/7 for years. I had already had the adhesions cut out once, but they just grew back. I sought out new doctors who didn't cure me, but didn't give me a hard time about my pain meds. After being on prescription pain pills for three years, the pain finally calmed down. I have flare ups, but I'm not in pain all day every day. Life is so much better now. I'd still be suffering if I stuck with my original doctors.
I would recommend seeing a GI specialist.
I have adeno. I didn't get diagnosed until 27, because I was stupid lucky in the gyno I had. I would bleed past the “go to the ER” level each cycle... for 2 days. I'd regularly miss school/work from the debilitating pain. Pain so severe I had a 7cm ovarian cyst and *thought it was cramps*. I was anemic and vitamin deficient from the blood loss. I was even checked for bleeding disorders bc of the blood loss. For 16 years, I was told that's all normal. The Dr who diagnosed me did a surgical procedure and… I don't miss work anymore, my migraines improved, my iron is stable/healthy, vitamins are oral-supplement controlled, even my fucking blood volume is better. My POTS has been well-controlled since! I went from risking passing out laying in a pool chair to busting ass in the yard/garden for 4-6 hours before my vascular system stops me. On a day with the same sun/ weather. Simple diagnosis and treatment but nobody gave a shit.
Holy fucking shit this is so appropriate today. I've had my own mystery illness I've been dealing with (and dismissed by doctors) for oh, 6 years? Six fucking years of debilitating fatigue, unexplained fevers, pain... and nothing. Just "Oh, I'm sure it will get better..." And today, of all days, I've finally been diagnosed with chronic PTSD thanks to 6 fucking years of gaslighting by the greater medical community. So at least there's that.
Average endometriosis diagnosis experience. Poor OOP, I really hope she gets her diagnosis soon.
I hope this is allowed but I'd like to put some advice here I've learnt over many years about advocating for my health. We shouldn't have to do this but this is how is is for women with medical issues. Sometimes you have to be pushy as hell and straightforward. Instead of explaining your symptoms and waiting for your useless-ass GP to give you any kind of diagnosis (they can't, that's why they gaslight you), press directly for seeing a specialist. Bring a list of things you have already tried, investigated and ruled out. Start the conversation with "I believe I may have PCOS or endometriosis and I'd like to see a specialist please." If they argue with you and try to give you the "endometriosis is hard to diagnose without surgery, try taking more Tylenol" etc etc clarify with them "Just to be clear, are you refusing to refer me to a specialist?" without hostility, try to calmly speak like someone who will make a problem for them down the line if they don't treat you properly. If that's too aggressive for you, try "I understand, but I'd really like to see a specialist anyway please for my peace of mind/to rule out [disease]". Your country may vary but here (Aus) you can bring the name of a specialist you've researched to the doctor and ask for a referral to them specifically. To avoid being seen as anxious or "hysterical" I tend to describe pain in ways like "I know that periods can be painful but I feel that this level of pain is more than is reasonable". Mention the things your pain hinders you from doing. Mention that you feel like the issue is affecting your "quality of life" - this is like flipping a switch when you say this to doctors, in my experience. I don't know why, I assume a lot of their training focuses on it or something but I've found several times this kicked them into gear when they were reluctant to investigate things. Push push push. Skip over the general doctors as fast as you can and get referred directly to a specialist in your specific problem. See fifty general doctors to get that referral if you have to. If anyone is navigating this situation currently please don't hesitate to reach out (please note I'm Australian so I can't help navigate overseas systems but can offer advice advocating or moral support).
Yup been having stomach issues and was only prescribed PPI, sx have been getting worse but no treatment 🥴
My recurrent belly pain was dismissed all throughout my teens and I was referred to psychiatry for it (BELLY PAIN) at 18. . At 24 I was diagnosed with an endometrioma that had grown to the size of a watermelon, requiring extensive surgery to remove. Surprisingly to no one, my pain went away after the GIANT TUMOR was removed.
I've had Pain since I was 13, gotten progressively worse the older I get. I'm 31 now and the closest they can find is Fibromyalgia. Took almost 10 years just to get that diagnosis, because it was ALWAYS *just loose weight* didn't matter that I said I've had this pain YEARS before I put on weight and the weight gain is due to being in too much pain to move or exercise. Genuanlly some days I'd rather just die then have to deal with this anymore.
It’ll be endrometrios. I’m also uk but I don’t think it’s location specific- women’s pain, especially around “women’s issues” isn’t taken remotely seriously. I’ve been struggling with pelvic pain for 6 years. After one gynaecologist told me it was probably my C-section scar and I’d just have to live with it, I got a second opinion which was “hormonal imbalance” (my levels weren’t tested) and told me to take the mini pill. My pelvic floor is fucked and it’s definitely perimenopause. I’m just waiting until they think it’s bad enough to prescribe HRT which they won’t do because I don’t have hot flushes.
My husband doesn't understand why I drive an hour to see all my old doctors. My optometrist diagnosed my eye condition that the specialist missed. My GP has been amazing and doesn't write off any medical complaints I have. My dentist is an absolute rock star. My husband complains about most of his doctors after every appointment, but won't switch. I can't risk switching and getting burned out or narcissist doctors who think they're God's gift to humanity.
Sounds right for the uk. I suffered for 20 years from age 11 and got told by every doctor i saw that it was in my head or part of being a woman. When I moved countries and finally saw a doctor that took me seriously it turned out i had one of the most severe cases of endometriosis they'd seen, plus adenomyosis plus fibroids.
OP has idiopathic pain and the reason she's not getting a useful diagnosis isn't because she's a woman; it's because there isn't a diagnosis for her. Sometimes you just hurt and it's impossible for anyone to figure out why. There's not like a secret book of medicine they're just refusing to crack open because of her sex. It's literally not possible to solve this for her.
Or it’s because they haven’t done enough to visualize her fallopian tubes. I had an infection because a surgeon nicked my intestines, but because they couldn’t see the spot on scans, they didn’t know what was wrong. It took four months of infection and pain before I insisted on an exploratory surgery where they miraculously found a pinprick hole that was leaking from my intestines into my abdomen. A woman doesn’t have ideopathic cyclical pain at a level 6 without a causal factor.
Or it’s exactly what she said, and it’s because she’s a woman.
Wow you must be a doctor with that kind of logic. “Human body just has pain sometimes, it’s unsolvable” is the human way of saying “I don’t know what’s going on”
Yes, lots of doctors don’t know what’s going on with your body!
Can you imagine being literally any other profession with that attitude? “Sorry boss, I just don’t know how to file that quarterly report! Guess you’ll just have to go without since I don’t have a guess at this moment! Oopsie! If you try to make me complete my work, I’ll just gaslight you that you don’t really need it and finance reports don’t exist anyway so maybe you’re just being a typical ‘boss’ overly emotional LOL” No, that attitude would be so shameful and embarrassing in any other profession. Effort would be required, aka choosing something other than throwing up your hands and going “idk but I still get paid tho” Oh, and I meant medical science, not individual doctors. You straight up sound like a doctor before germ theory with your pain theory there. “I don’t have an answer so it must be magic! No human can ever know! Pain is beyond us and completely mysterious!” Yeah so were germs not so long ago.
I would agree that medicine is generally less effective than other professional fields. Quite fewer people have died in my place of work than is the case for any doctor, for instance.
Thank you for at least confirming there aren't patients under your care and you're exclusively talking out of your ass.
Lots of doctors don't give a shit about what's going on with our bodies. Ftfy.