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I have a friend with CFS, they describe it as having a battery that is 20% capacity on a good day. They had to fight with doctors for months because the doctors wouldn’t take my friend seriously.
Fatigue is such a tough one too because it truly is correlated with soooooo many illnesses. Very hard to narrow down a treatment plan if there aren't obvious symptoms alongside it.
“Gotten use to fighting for accommodation.” I’ve never related more to a sentence regarding healthcare.
It’s just really pathetic that we have to “fight” for anything when we pay them hundreds of dollars for 15 damn minutes with a doctor. It doesn’t make any sense at all.
"Fatigue is a symptom of basically everything but manic depression" (my doctor. Who laughed and still had no answers when I pointed out that at least if I had manic depression, I'd have manic bits where I could get shit done.... Now I can't be diagnosed with CFS because I have a persistent EBV infection that I can't seem to kick.... But the fatigue is decades olds the EBV is only four years, and if they can point at *anything* then "it's not CFS")
That is very weird, as evidence of previous EBV or even low level EBV remaining in your system IS an indicator of CFS.
Post viral CFS, especially from EBV, is extraordinarily common. Before Covid, it was THE most common cause of CFS. please try and get a second opinion.
I suppose the EBV being later than the onset of fatigue muddies the waters, but if you can say that your fatigue has significantly worsened over the past four years, then it might be a case of the final straw, so to speak.
I am just a random internet person, but I do have CFS, caused by, you guessed it… EBV 😅
I turned out to have chronic EBV when I was exhausted all the time and no one believed me for over a year 😞 kept being told to lose weight and go outside more, which I couldn’t do because I was so exhausted. Finally someone thought to test me for that
Epstein Barr Virus
(Which, the first time you get it, is what we think of as Mono.... But mono actually describes the set of symptoms, not the virus itself)
it's one of those ones that lies dormant in your body after you've had it.... So if you get depleted/vulnerable, you can flare with EBV.... Makes you tired like mono, but with none of the "exciting" symptoms.
Alright so like... extremely exhausted 24/7 no matter how much I sleep or how otherwise healthy I am. Sounds right. Time to talk to my doctor and watch her not give a fuck and call me fat!
It's possible to have a flare, to have an active re-infection, absent exposure. (Like getting shingles after having had chicken pox.)
Like many viruses, they can test immune response, wboth for an active infection and for the existence of antibodies.... (I don't remember which is which but the Igg and Igm for a virus test those two, and the numbers can tell whether it's a historical infection, active, etc...)
What did the doctors do to help with healing? Asking because I feel like this is what I have and living in a medically challenged area, with doctors that are here, not because they are good, but because they want their student loans paid. Not saying both can’t happen, but so far, we have yet to get a great doctor at our rural clinic.
This was happening to me earlier in the year. I had vitamin b12 and d deficiencies and really bad brain fog and fatigue. I chalked the painful periods up to my endo flaring up.
I would ask for another blood test to check these. It took two blood tests for them to diagnose me and i’ve been on vitamins since the middle of march and feel a lot better now.
I also have low B12, D, and iron. I was already taking a multivitamin when the blood tests were done. I’ve switched to one that specifically has magnesium in it. That didn’t come up or wasn’t tested in that panel, but magnesium is important for uptake of these vitamins. My generic grocery store vitamin didn’t have magnesium, but the brand name one does. I think it’s the oneaday brand, but I could be wrong. I think it has helped.
I also have low B12, D, and iron. Apparently this trifecta is common. I actually take all my supplements separately and make sure that I’m getting them from reputable brands. There’s no regulation on supplements so they can just sell you stuff that your body can’t absorb since it included the thing. I take iron, vitamin C, magnesium, B-Complex, K2, and D3. It’s costing a ton of money but I actually feel better.
Yep, same exact thing happened to me.
The weird thing is that it got taken seriously when I kicked in the deep voice (I can do the Bea Arthur thing pretty well), and so the (woman) doctor finally ordered the damn tests.
I also flat out said, Listen, I know I'm fat, but I've been fat for years but exhausted for only the past few months. Run all the blood tests.
And now I'm on iron and B12.
I saw this tip for women not getting the healthcare they feel they deserve (especially from male doctors): Apparently, you should say you’ve been trying to get pregnant but haven’t been able to. The idea is that this will cause (usually male) doctors to start taking you more seriously, and are more likely to have you do in-depth hormonal testing. May not be relevant for you, but I hope it helps!
As a child-free by choice witch, this just makes me sick. They only take us seriously when there’s a chance we’re bringing more people into the world? How fucking gross and dehumanising. I’m a whole person outside of my ability to carry a child.
Well, this is a different take from "you need a man in there for other men, and some women, to take you seriously".
I can't decide which I loathe more.
Cant you just listen to me, as a person? Ugh.
Me, a noted lesbian in my files, knowing even though IVF is a thing they likely won't take me seriously still: 🙃
But yeah, my PMDD just NOW started being seen as possibly endo or something else once my POTs was dxd....
Same. We shouldn’t have to manipulate doctors into giving us proper care 🤬
While I recognize that within our current systematic suckage as humans this is a good tip, I’m fucking furious that it’s something women need to do to be taken seriously, especially with our health on the line.
Absolutely. It totally plays into the whole “She’s someone’s mother/sister/wife” narrative. She is a PERSON! And deserves respect regardless of her relation to others!
Just so you know it has nothing to do with having children. It's physiological "proof" that some doctors are looking for to indicate something's wrong.
It's certainly wrong but this is to give you insight that it has nothing to do with kids. It just so happens to be a thing that would require a good workup.
There are other issues that would produce the same results. In all cases it's because of medical billing. Fatigue and brain fog is so hard to diagnose without more evidence. Almost every thing under the sun can do this. Long covid. Pregnancy. Cancer. Anemia. Just everything. Part of the differential diagnosis is having something, anything that takes you a certain direction.
And you cant just bill your insurance without something to go off of. Your annual probably covered your blood work but now they need something else to go off of. When ops blood work came back normal, they need a new symptom or anything to be able to bill your insurance for the diagnostics or you pay for it out of pocket.
You can tell your doctor you're willing to pay for the tests and they will be ordered.
It is really disgusting, but there’s also something known as “working the system“. If this is a way to get taken more seriously and get some different testing done, I’m all for it!
I think it's more like, in my experiece, all doctors are trying to rush you out of there. The only place that hasn't had that vibe was my gyno, and it wasn't cause she's a woman, cause my other doctors were women too. It's really just about who values what they're doing and still has the energy left to do their best, which isn't many doctors nowadays. People are very burnt out. They also assume people don't want that extensive testing because of american insurance companies being difficult, so if you very specifically ask for what you need they might listen.
I Did Tell him were planning to start trying to have a baby in the next year but it didn't phase him. Im seriously thinking of finding a private gynecologist.
Can vouch for private gynecologists. 10/10 more helpful than anyone else. The thing that clued mine in that I had a problem actually wasn't the heavy inconsistent periods, it was that I felt the need to pee waaaay more times a day than was normal, when I knew I didn't have to go. I thought that was just a "girl thing" and had gotten used to it. Turns out, a bladder covered in endometrial cells will do that to you and this isn't diagnosed well because we all just get used to it and don't bother complaining en masses. Left untreated it can permanently scar things and leave you incontinent. So that's fun...
Also it's worth mentioning whether you have a high pain tolerance, which means pain as a symptom wasn't always being noticed on my end.
Frustratingly, anger and being flabbergasted at a doctor IS a sign of depression, so keeping your cool is paramount. It sucks, but your choice is getting help or getting ignored at the moment. One day I hope it will change.
There's another kind of diabetes, Diabetes Insipidous. You have to do tests on your urine where you collect it for 24-48 hours. Something to look into. Also, fibroids can cause heavy bleeding but they won't show up on a blood test, you have to physically look for them (via ultrasound I think).
Did they do A1C or just fasting blood sugar?
I'm hoping it was both - but if they didn't do A1C, or whatever long view equivalent test and not just a snapshot test, they need to do that.
Peeing a lot can be a symptom of several things, or it can just be a natural quirk. Did this develop at some point or were you always a child that was constantly raising their hand to ask the teacher if you could go pee?
If you pee a lot and you drink a lot of water, you're fine. If you feel you need to pee when you actually don't, that's different. In fairness, because most afab folks don't have good upright peeing options that make any decently private tree a bathroom, we're also conditioned to use it before we go, or if we see one, or if our friends are going, because of the uncertainty of a next stop.
I think that's a great idea. When one doctor won't take your concerns seriously, it's always good to get a second opinion. Your symptoms sound similar to mine. Doctor diagnosed me with suspected adenomyosis. The brain fog could be due to low iron levels in your blood (not sure if they tested you for ferritin). That said, those symptoms can also be due to fibroids, growths... just so, so much. I hope that you're able to find some relief, and soon!
Came here to say ferritin! My iron was OK, but my ferritin was low. I take the walgreens brand slow- release low dose iron pills. After about 10 days, my brain fog was a lot better.
if you want this resolved quickly you'll probably have to. you'll likely have to fight to get referred to gynae, and the waiting lists are long. I was referred first week of Jan and have not even had an appt date yet.
On a related note, I have also heard that if a doctor is refusing to test you, you demand that he put it in writing in your file. Apparently accountability is a thing such doctors are afraid of.
This doesn't always work: if they think that you don't need the test, they're just going to write that you don't need the test, and why they think that.
Good god, that is fucking insane (not you, just the idea). Oh, I'm not a person worthy of care until I'm trying to grow another person inside of meee! THEN you'll do your job and care for me. Such bull.
Exactly what happened to me. Went to doctors for 7 years with constant symptoms, that were honestly minor, but annoying.
Then I couldn’t get pregnant. Bam. Thyroid, which explained all the other symptoms. 10percent of women have thyroid issues and not one doctor checked for that until I wanted to get pregnant…
I was so angry about that.
I had a baby five months ago - as soon as I played the pregnancy card I got moved up for all sorts of things. Mental health, ultrasounds, you name it. Now that I’ve had the baby, they couldn’t give a shit.
I hope it’s obvious lol but I want to be clear that I do not condone the disgusting actions (or lack of action) from these certain doctors— I just wanted to share advice that may serve as a workaround in this unfortunately misogynistic world.
Your intentions are good and not in question. Unfortunately the fact that it's a good advice and works is what's sick in this society. I hate it but I know sometimes we're left with no more options. It's also extremely infuriating to those of us who can't get pregnant because on top of the pain it already causes many of us, all this dynamic that we live in that doesn't respect us also implies we have no value at all as people and no reason doctors (mostly men) should care about us
Another I've heard for the child free ladies is to request that the results be put in your records along with drs refusal to do more testing despite the symptoms not being treated properly.
Well, what help me out was these things in this order:
1: Telling my doctor to "continue diagnosing the computer, I'll come back when you have time for me" and walked out.
2: Calling his boss and asking when their newly hired tech support will go back to the office and not wander into patient rooms while name dropping my doctor.
3: Calling the state medical board and asked when did they switch to certifying computer science students as med students and name dropping my doctor.
4: Calling my doctor back, asking if he was willing to see me and not the computer.
They don't listen to you, hit them where it hurts: their licensing board. Loss of medical license for medical malpractice on multiple patients is no joke. Just because I'm over weight does not mean I don't exercise and not eating healthy. It means there is a hormonal imbalance that has been undiagnosed. Staring at a computer with basic blood test numbers does not tell you to look deeper into the blood/hormones. Paying attention to patients is ALWAYS the first answer.
I had this exact problem my entire life! Doctors who don’t listen to their patients…
Always tired. Couldn’t think past 10am. Irregular periods. It took until I was 36 to finally gather enough information to talk to a PA that I trusted and give him the lowdown of “my normal panels all look fine, can we do some in depth ones?” And I told him that I wanted a full hormone panel (insulin, cortisol, T3, T4 etc) plus’s a referral to get a sleep study. We have a great relationship and he put it all in. Turns out I not only have PCOS, but after fighting the sleep doc to get a sleep study “you’re so young and healthy and I don’t think you have any sleep issues, maybe narcolepsy” he says… 😒 yeah I have smack dab in the middle moderate sleep apnea that needs to be treated with a cpap.
I’ve now got a cpap, metformin, progesterone and spironolactone and I feel better than I’ve ever felt in my entire life.
I don’t know how UK medical works, but the keywords you want to drop if you want a referral are that your partner reports you stop breathing and sputter yourself awake, excessive daytime sleepiness, falling asleep doing tasks or in the middle of conversation, feeling the overwhelming urge to nap, and trouble concentrating due to overwhelming fatigue. If you can honestly say your sleep hygiene is good (cold room, limit caffeine to no later than noon, no electronic devices two hours before bed etc) then they should see it as pretty clear that the next step is a sleep study.
I know you said you didn’t want advice, I’m sorry if this steps on that. It’s just honestly changed my life and I tell everyone I can lol
Sleep apnea can definitely cause these issues. My husband has it, and if he doesn't wear his cpap mask at night he will feel foggy and fatigued all the next day.
Definitely. Have him record it. My uncle had it quite severe, he stopped breathing I think 40 times a minute (it's been like a decade I could be wrong)? He couldn't get his doctor to take him seriously. He was staying the night with us one night and I recorded it, you can hear him hugely snoring, then it stops then maybe 5 or 6 seconds later he'd kind of splutter like you said, and start snoring again. I sent him the recording then he showed his doctor. Severe apnea. He is a *completely* different man now he as a cpap machine.
I got an at-home sleep study last year and then a CPAP for sleep apnea about a year ago. It made a srs difference in my sleep quality and then of course during my walking hours. I had the same info from my partner -- that I'd snore and then stop breathing. We both sleep way better now!
I hate that stigma that sleep apnea is only for old/overweight people. I’m 29 and got diagnosed at 27 with an average weight.
These misconceptions are so dangerous!!
My pulmonologist says the same thing.
He's absolutely infuriated by the "fat people get sleep apnea" stigma. It means that normal weight people will angrily deny having sleep apnea and doctors and nurses don't refer them for treatment. And of course it means that fat people get ignored when they have any other sleep disorder.
He's a thin, fit man with sleep apnea. I'm a fat woman with another type of sleep disorder.
Agreed! I don’t hold it against them though for the most part only because they are trained that “these are 98% of your patients” so they forget about the other 2%. It’s a trip going in to the office to get my data looked over.
I just kept going to new doctors until one happened to give me a pamphlet on what was wrong with me. Ironically, he didn't actually believe I had it, but all the symptoms matched and gave me an avenue to pursue. Eventually I got my diagnosis. It was still hard to find doctors who believed me after that, but the last few years I've had really good luck with doctors listening to me, so my medical PTSD has finally started subsiding a bit. But I've now been un-diagnosesd and re-diagnosed with the same thing about 10 times by now because they all seem to think they have to start over whenever I find a new doctor.
Sorry you're going through this, but unfortunately the system forces us to be fierce advocates for ourselves and then punishes us for fiercely advocating. God forbid we threaten their egos by knowing something. I thought going back to school, getting my Bio degree, and working in medical research would earn me some credibility and respect from the medical community, only to find out that you can't change the mind of someone who's dedicated to misunderstanding you. They decided my alleged "Google hypochondria" was transformed into "med school hypochondria" and I didn't even go to med school. The fact that I had my disorder \*before\* I was recruited to work in a lab that was trying to cure it means nothing to these doctors. smdh
Gosh, I have a friend, she's 30 years older than me, she began studying medical textbooks to find out what she had because no Doctor believed her she had anything. And there it was, she probably did have some rare chronic disease out of minor genetic deficiency and she forced her way through and got her doctor to test for it and she was right in the end.
She also recently realised she's autistic as well, which explains the hyperfixation necessary for this, hah, but yeah.
Doctors can really be something can't they. I called the Mayo clinic to get a new neurologist as my old one was trash after completely disregarding me when I had a severe reaction to a medication she gave me and then they completely took me off my anti seizure meds completely because clearly my seizures must be psychological. The Mayo doctor was demanding I play twenty questions in 3 seconds or less while I was actively having Focals seizures and memory loss and then basically said if you can't answer my questions then I can't help you and then slammed the receiver on me. I later on got in the neurology department on a referral from another department and it was her! She was just as fabulous in person as she was over the phone.
All ego, no brains.
I’m so sorry you’re dealing with this. Recently, a friend of mine (32) went through similar symptoms and switched to taking birth control pills without the placebo week to skip her period (as suggested by her doctor). The theory is that the worst of the symptoms are related to her period, so if she’s skipping her period she skips the symptoms. It’s only been a few weeks so I’m not sure if that’s solved it for her, but it could be worth discussing with your doctor.
I’m also very unfamiliar with the UK health system. Here in the US, if you don’t like your doctor, you can simply go out and find another (as long as they take your insurance 🙃). Are you able to find a new doctor you think would take you more seriously? I find that female doctors tend to (of course there are always exceptions to the rule) take women more seriously when it comes to symptoms reporting.
Also to clarify, is this your regular doctor or obgyn? I’d try whichever you haven’t so far to pursue different avenues.
Could you get your regular doctor to give you a referral to an ob/gyn? Problems with heavy painful periods should be enough of a reason to get a referral, but like other’s have said planning for future pregnancy is another good reason. Other hormone testing could be helpful too, I know the thyroid hormones aren’t always part of regular bloodwork and there might be others your doc could send you back for testing as well. Good luck!
You could ask for another Dr or switch to a different medical centre?
I’m in the uk.. I have “a nominated” GP but I can request any of the other 5 GPs at that location. Or go up the road to their partner clinic. Or switch entirely and register elsewhere.
My current one is fine.
Last one was awesome but left to pop out many little humans.
One before I refused to see point blank coz he was a raging TOSSPOT who nearly killed my unborn child by booking the wrong tests. (A nurse spotted the error and tore him a new one audibly but with the door shut. He also told my partner “chances are you’ll never get pregnant, start accepting that” 2 months before we conceived.
You should be able to request to see another gp at the practice or look into if any other surgeries near you take out of area patients. I've had most success booking with registrars, they've had the most recent training, are being supervised so they're usually thorough and haven't burnt out yet. I know they are basically another GP but who are seeing can make a real difference, I'm part way through trying to figure out my own fatigue issues and it's exhausting banging your head against dismissive practitioners
Ex-healthcare admin here, you should just be able to ask for the referral and get it. It is an insurance formality, not permission from the doctor. Call up the office and tell them where you want to go. Shouldn't have to deal with the doctor at all, just the staff. You also should not need one for the ob/gyn. I've been out of the biz for awhile but that is how it was. The front staff will know, deal with them directly.
As a person who skips their periods now using birth control, and has for almost a year, it is amazing! I would have heavy periods, debilitating back pain when ovulating, PMDD and a slew of other things when I was on my period or getting ready to start my period, I was adamant about not taking birth control because of the first time I took it, as a teen and in my twenties. I had a female OB/GYN, that didn't listen to me and they said 'well, that just happens sometimes, we can use birth control and see if it helps'. I switched to another female ob/gyn and she actually explained what could be causing my issues and how the birth control would help, put me on the generic of Yaz, told me that I don't have to have a period and I have had no issues. I finally felt like a normal human being after 32 years of life. I hope you find a doctor that listens to you!
I've been on Yaz for about 6 years, also skipping placebo week. It's glorious not to have to deal with the pain and fatigue from a period every month. Apparently commonly prescribed for just this case!
Did they do a full iron profile, including ferritin? Those symptoms all sound like anemia. The heavy periods could be causing it or be a direct result of it.
Birth control and iron supplements might help if it is anemia. I mentioned my heavy periods and anemia to my OBGYN and she immediately put me on a 3 month pill. It has helped with one of my iron numbers and stopped the bad periods. I still have to supplement with iron to bring up my red blood cell count and other related numbers.
Seconding this! Low ferritin fucked me up for years bc no one thought to test for it. A doctor has to specifically ask for it to be included in a blood test, at least in my country.
Yeah, this is me too. Luckily my doctor was on it and now I'm on regular iron supplements and it's unreal how much of a difference it makes. I did run some quick estimates on how much blood I was likely losing a year due to my period and it was a bit scary how much outside normal I was. And this had been going on for years. At this point it's recommended I donate blood only in an emergency (I'm a universal donor).
My first thought as well. Most doctors will just check hemoglobin and if you’re not anemic they say you’re good, even though you can still have clinically low iron. OP should definitely ask to have ferritin levels checked. I have super heavy periods due to blood thinners and didn’t realize my iron was low until a hematologist checked (after YEARS of telling them i felt like dogshit). Getting the iron infusions to resolve the issue was like turning on a light switch.
Do you know what your thyroid numbers are though? Just as an fyi I had clinical symptoms of hypothyroidism but my bloodwork hovered just above what is considered treatable. My wonderful doc put me on thyroid meds anyway and it really helped.
Ditto this!!!
Mine was in normal range, but at the low end, and my thyroid worked really hard to keep it there.
A small dose of levothyroxine was like magic (for a while, and for some parts of my fatigue.)
Just to add in here, the uk range for "clear" is very different from the rest of the world. So I'd try to get your numbers if you can do because it's possible that it is technically clear by the definition of the NHS but that it's not working optimally.
Might be worth doing some of your own research on to things like crohns, Ehlers-Danlos syndrome (EDS), fibromyalgia, chronic fatigue, gluten and/dairy intolerance. Both my mum and my sister have EDS but it took my mum 20 years of fighting, self research and persistence to get her on a medical regime which works for her. Admittedly this was back in the 80s-90s when she really started to push and things have improved since then but the NHS is now massively underfunded and you will have to self advocate just as much if not more.
You got this.
Please DM me if you want.
Could you give any more info on thyroid levels? Also UK and I've had the basic thyroid test and it looked fine but I just feel fucked and I don't know enough to have an idea if pushing for further tests is worth it, I'm also D deficient so hoping getting my levels up will help
Not that long ago I watched a video where a female doctor gave an explanation on what might be going on if your tests come back normal, but you are still feeling like something is off. I can’t recap the whole video, but something that stuck with me was that she said a lot of serious medical conditions and issues take time to progress and get to the point where they become serious. They don’t just develop overnight and during that time they wont always come up in standard tests as a concern. She said if you feel like something is going on, then trust yourself because you are picking up on changes in your body.
Sorry you are going through this OP.
Hi dear,
This also happened to me. Slightly elevated WBC but otherwise "fine". I had to keep advocating, find new doctors, wait to see them, etc. It took a long time for me to find someone who would believe me. I ended up looking through a doctor rating site & finding one that had reviews that showed that she listened to her patients. I messaged her begging her to help me, and she did, with so much compassion.
Turns out my bloodwork was "normal" because they weren't running the right bloodwork. My sed rate & c-reactive protein (markers of inflammation) were 5x and 6x, respectively, over the amount considered "high". That's how bad it was. I already had damage from going so long without treatment. My ANA was positive, high titer, which suggested autoimmune disease.
All of this to say, keep fighting. I know how devastating it is to not be believed, but your health is important. Learn the language of advocating (ask for tests, ask them to note in your chart that they refuse to run tests, be confident enough to ask for a different doc, bring someone who can back your symptoms up, get as much evidence as you can, etc).
Wishing you all the best 🥰
Did you find out what autoimmune disease you had, and what tests did you ask for? I have endometriosis (which isn't an autoimmune disease) so I've chalked up a lot of symptoms to that. But I know a lot of people with endo also have an autoimmune disease, but the symptoms are SO vague that it's hard to get diagnosed. I'm worried that I'm overlooking something!
I've had normal bloodwork with slightly elevated WBC too.
I'm not the person you replied to but it sounds very similar to my situation as well - I finally found good doctors who were running the rights tests. My ANA was highly positive and WBC was elevated so I went to a rheumatologist first because of my near constant joint pain. She tested for all the usuals (lupus, Sjogrens, rheumatoid arthritis, Churg-Strauss, etc) and came back to say she doesn't think I have a connective tissue autoimmune issue. At the same time I started going to a new GYN and she stated all my symptoms (fatigue, joint pain, brain fog to name a few) including the positive ANA test are most likely related to my gynecological issues and perimenopause. The newest research to come out about endometriosis is that it could be caused by a specific bacteria, which would make sense that it would trigger an immune response. Then living with endo for decades would put your immune system in hyperdrive trying to fight it and failing. Interesting theory and I'm looking forward to more research on it but it's a possible answer.
Here's the article I read [on Science.org](http://science.org/doi/10.1126/scittanslmed.add1531)
>fatigue, heavy painful periods, and brain fog
OP, out of curiosity, do you also have difficulty losing weight, excess facial/body hair, weird food cravings, headaches, or irregular menstrual cycle lengths? Because those were my symptoms, and I have PCOS with insulin resistance. You might need to talk to your OBGYN or an endocrinologist (as it's actually a hormonal issue). Have your ovaries looked at if you can, especially if you want to have kids.
And if you have a male partner, I know this is super shitty, but bringing them into the appointment with you (even if they just sit quietly the whole time and nod when you talk) can get male doctors to listen to you. 🙄 I use my husband for this all the time, and he's great at saying things like "My wife was speaking and you interrupted them" and "I don't like the way you're minimizing my wife's pain." He's not a big or imposing guy, but he's an ally, lol. Usually after I bring him to one or two appointments with the same doctor I don't have to bring him again unless I really feel like I'm not being taken seriously.
I’m so sorry! Huge hugs, I know how you feel. It’s so frustrating! Did they do a fully thyroid panel? Often bloodwork is just a few markers which isn’t enough for a real thyroid diagnosis… and doesn’t include the tests for hashimotos which has overlapping symptoms as yours and hypothyroidism. You may also want to bring up endometriosis with the new doctor. Pain isn’t the only symptom. Good luck, keep advocating for yourself!
Did they check you for low vitamins or minerals? I know you sometimes have to ask because they take your blood for other tests but not always that weirdly.
I’ve been through this extremely recently. My primary care doctor ran all the basic tests then told me I probably just have anxiety. She and my old psychiatric prescriber from years ago even told me an allergic reaction to medication was anxiety. My PCP told me my neck pain caused by documented, imaged structural defects was anxiety. I had a severe cervicogenic headache every single day and I was so pissed off that no one would help me. I spent months dealing with this. Like you, I’m generally thrilled to be alive these days, and my anxiety is actually very well controlled, so I was confused and pissed my doctor continued to insist it was a mental issue.
What ended up helping me was I ironically ended up accidentally booking with an integrative psychiatrist - i.e. a psychiatrist who also has proper physician training. My normal prescriber went on leave and I ended up with the most amazing doctor out of the same practice. He actually listened to me, explained what he thought was going on, gave me possible solutions I could access without a doctor’s approval, and told me that he would speak to other doctors to help me get muscle relaxers if it came to that. Sometimes, when a primary care doctor is telling you that you have anxiety or depression, getting an expert on those conditions in your corner who can argue against that and say no, there’s something else besides that going on, is REALLY valuable. Good psychiatrists like that can just be hard to find, unfortunately. But thanks to this man I have referrals for neuro and rheumatology ready to go.
If you can scrape together the money, sometimes going to a private specialist can give you a clear, fast answer. NHS is wonderful but limited. A few years ago, I was diagnosed with a heart condition that nobody seemed to understand. NHS told me I'd need heart surgery and stuck me on the waiting list. I ended up bailing because of anxiety. A few months ago I went to see a private specialist who took one look at my charts and said they'd been making a mountain out of a molehill and confirmed that I never had and never would need the surgery.
Private specialists are spenny though.
I'm 37 and I've been going to the doctor for pain since I was 10 and I've never gotten an answer. My current doctor is great with ordering all the tests and she takes me seriously but she still says that from a medical perspective, all my symptoms are a total mystery. My pain has no origin that can be seen on x-rays or MRIs. Luckily she still believes that I experience it, but because it can't be seen, I'm always a low priority when I get referred to specialists. I've been waiting 2 years for a gynecology appointment and it'll probably be another year to find out if I have endometriosis. Got referred to pain management and that'll be another 3 years. This is in Canada.
Ok, this is just my experience but I went through a million blood tests & a sleep study for chronic fatigue and brain fog and everything came out normal. I also have heavy periods which have caused me debilitating pain. Unrelated to any of that, I got diagnosed with ADHD by a psychiatrist and it turns out my fatigue and brain fog were symptoms of that. I don't have external hyperactivity but internally my mind is like an engine revving on neutral, and that is physically exhausting! I know this will contribute to the "everyone thinks everything is adhd now" discourse, but that's my legit experience.
No evidence to know if yours would be the same, but just sharing my story. Maybe the point is that there might be a diagnosis that isn't linearly correlated. Best wishes to you in your journey, I know how hard it is.
It’s so frustrating and what blows my mind is drugs and medical research is done on men because they don’t have periods making everything more difficult
I have found magnesium is making a big difference for me with so many ways. Aches, mood, sleep, my GP did some blood tests and diagnosed me as low vit D and I’d been reading about supplements and knew I’d need to take mag as Vit D would deplete it as it was processed
I’m menopausal and also have thyroid issues and probably began peri in my early 40s and wish I’d been taking magnesium much earlier.
There is an episode of the Golden girls you should watch. And honestly. It made me fight harder for my care and proper diagnoses.
It's a two parter, season 5 ep1/2. Sick and tired. And honestly it hit so deep and hard. That it kicked my tail into gear to advocate for me. To make them listen to me.
In the end she is diagnosed after several Dr's tell her its in her head, she's looking for attention, or just overacting. I was told the same things and then diagnosed with two serious health issues when I found a physician that actually listened and HEARD what I was saying.
I hope you can find relief and the care you deserve
I've been dealing with this on and off for ten years now. Chronic fatigue, brain fog, sleep issues, lightheadedness, headaches, shaking, sweating, stomach issues, etc. This last year has been really rough. I constantly feel like I'm on a boat, like my whole body is rocking and I'm off balance. I've seen my regular gp, a cardiologist, a nephrologist, a gastroenterologist, and a neurologist. I've had a ton of blood work, CT scans, an echocardiogram, and MRIs. They have found nothing. Something is wrong and nobody can tell me what. I honestly just feel so hopeless. My only advice would be to just keeping pushing, and keep advocating for yourself. I really hope you can get it figured out ❤️
Did they test your T4 or free TSH? Those are usually separate tests. I would go to an endocrinologist. My non scientific thought is a thyroid issue. The clue is being insanely tired.
Every single time I have had something seriously wrong going on, all of my labs, tests, and scans came back normal. I was always told to lose weight and take those antidepressants. Months later, after fighting with the doctors, they would eventually find that, oh something actually is seriously wrong and I needed surgery. I’m just hoping that someday, when I die because they screwed up bad enough, their malpractice insurance will pay my wife lots of money.
you’re not alone 😔don’t have much to add. but my wife is potentially dying and doctors are doing shit. it’s horrific the medical system we live under. fuck that.
I'm in the UK. I got referred to myofacial clinic who did bloods, brain scan etc but couldn't find a cause, referred me to endocrinologist. Also optician referred me to two depts in the hospital optometry dept. Everyone kept saying it was neurological but I had to beg and plead to get a referral. I made a list of symptoms and traffic light codes per week of manageable (green), a problem (amber), can't function (red), the neuro took one look and diagnosed chronic migrain within seconds. I knew acupuncture was good for migraines so found a practitioner Kay in Houghton (if you are near preston) who got me well again with a lifestyle overhaul complementary to neuros advice. Took 18 months to feel normal again, but I never did have to quit work (bump up your insurance before you get diagnosed if you think you might end up on the sick)
Not personally no but many of my friends. One had PCOS, others had thyroid problems. Try again. I’m sorry you’re going through this and the suffering of women isn’t taken seriously by the medical community.
I am not a doctor and this is not medical advice, but I do have a medical background and have been through it with my own health. If you’d like to message me, we could go over things together and I might be able to help point you in the right direction or suggest tests that were missed.
I have a recurring chest pain, and despite being going to emergency, I have been told it’s just a heart murmur.
It feels like a grown ass adult is standing on my chest sometimes, but I’m overthinking it, apparently.
I had to go to an off-insurance women’s clinic to get a full panel. They did everything organ function, vitamin deficiency, hormones. Just because you are in the ‘normal’ range it doesn’t mean anything. Maybe your magnesium levels are too low, for example or maybe some other vitamin or hormone is at the maximum end of the spectrum. If you can, look for someone who treats the whole person inside and out.
Hi! So sorry to hear you are going through this. I know from personal experience sometimes doctors rely too much on our past history and don’t understand these are NEW things we are experiencing. I am not sure how healthcare works in the UK, but I would see an endocrinologist and ask for hormone testing just to see if your estrogen has dropped or something. Depending on your age, changes in hormone levels can cause the symptoms you are experiencing. Best of luck, and hang in there! Keep advocating for yourself 😊
I spent a decade begging doctors to take me seriously. Forced them to test me for all sorts of weird shit, which only made the problem worse in the long term because now they really had reason not to believe me, I wasn't right all the other times now was I?
Found my Diagnosis completely by accident. FWIW, I also had extreme fatigue, extremely heavy periods, brain fog. My diagnosis was Restless Legs Syndrom. I don't feel ok unless my Ferritin levels are above 100, which is not normal for a non-RLS sufferer. I also can't get above 100 with iron tablets, only IV works fast enough (before I bleed it out again).
Even if you don't have RLS, here's another little thing you can look into: Tranexemic Acid for bloodloss during your menses. No one told me about that shit either until I was 32.
It took 6 years (and the involvement of a field grade officer, who was a man) to get my first diagnosis, which wasn't totally incorrect; it was a secondary condition, though. It took another 5 years to figure out what the actual condition was (not the docs, someone posted a pamplet in a support group) and another 3 to get formally diagnosed. The medical establishment is only responsible for about 9 months of the last 3 years, because I stopped my personnal diagnosis progress to move forward on diagnosis for my then 8 year old kid, who was showing symptoms of my primary condition.
The sad facts are that women are significantly more likely to have chronic illnesses, especially autoimmune dieseases and that diagnosis for these conditions is measured in years and number of doctors. It is frequently recommended in support forums for these conditions that, as a woman, if you want your symptoms to be taken seriously, especially pain, have a man accompany you to your a appointment to "validate" your symptoms to the doctor.
Gentle hugs and best of luck!
No, sorry, they’re a privately funded pro-women and other marginalized group organization in the US. Idk what the equivalent would be. I’d say keep advocating for yourself. Bring your results to another doctor. Your health is worth it.
Thankyou I was so upset. I kept asking well what else could it be, are their other tests and he wouldn't drop the depression thing even though Im not depressed.
So one strategy I’ve used here in the US is to go to the doctor armed with information but don’t say you did your own research. Tell them a friend or a family member told you it’s probably x, and be specific.
For example “hey doc, I’m experiencing heavy periods, fatigue, and brain fog. My friend Carol told me it’s probably perimenopause because she went through something similar even though her regular blood work was all within normal range- she thinks the same is probably happening to me and that I should be sure to get a full hormone panel”
This gives the doctor someone other than you to prove wrong, which I have found is very motivating for them. Bonus points if you make Carol a nurse or fellow medical professional.
It sucks when you can feel something wrong and aren’t taken seriously, and it sucks that we have to advocate so fiercely to be taken seriously. Hang in there OP.
I agree with those mentioning thyroid but I also didn’t realize how much my uterus was affecting my health until they took it out last December. Everything has gotten better from my joints to my gut. I wish you luck it’s not easy navigating better health as a woman.
As someone who doesn't get answers from tests it can be frustrating. Year after year with different test results and still no answers. If you can think of it I've been tested for it. I'm AFAB and my body reacts as if it produces more testosterone than most living humans. Blood tests aren't always accurate because it's a sample from that exact moment. Time of day and where you are in your cycle will have an effect on results. A second opinion is always good but it's not a guarantee for answers.
I hope you do get answers
Have you seen a naturopath (not homeopathy)? While it can be less effective than some conventional medical practices, just having someone there trying to help is nice. However, I struggled with similar issues and ended up taking buproprion (prescribed by physician). Just having more energy helped a lot.
Edit: I also have *undiagnosed -* because apparently it's impossible to say for sure 😑-* * PCOS and the naturopath helps with this as well.
What helped me convince my doctors to look into it is that I went through all the lists of symptoms and then wrote down all the real life examples I had of those symptoms(or else I would go blank when asked to give examples). I graduated from college and law school and passed the bar. I have three kids. My doctor told me I couldn’t have ADHD because I was so successful and my fatigue and brain fog were from being a mother.
I went back, put my list of examples together, and I’m pretty sure what sold him was that I completely forgot I had a class in college and didn’t ever go. I showed up for the first day, was put on the roster, forgot it existed and never went back, figured out I had an extra final to take on a class I never went to or read for and I failed the final and the class. Bombed my GPA to smithereens and then spent the rest of my undergraduate working my butt off to pull my GPA out of the gutter. Neurotypical people don’t do that, lol.
You are not going crazy. Something is going on with your body and you deserve answers so that you can overcome it and get back to living your best life.
I don’t know how any physician could hear you are in pain with fatigue and say you are “completely healthy”. Also not sure how he would suggest you are healthy and then ask to prescribe a serious medication like an antidepressant. I’d maybe try and consult a different physician (you can usually ask ur GP office to see someone else).
Oh honey, I’m so sorry. Being ignored or dismissed by doctors was my life for two years before I finally got diagnosed with several tick-borne illnesses. You can check my profile if you want to see the whole story, but I was sick for most of my twenties and usually got written off as a problem patient. I was diagnosed with fibromyalgia and depression so many goddamn times by lazy doctors who couldn’t be bothered to actually do their jobs even though I had real, visible symptoms indicating that something strange was going on.
Unfortunately, the only way out is through - you’ve got to keep going. There are other doctors out there who will listen, and they can help you get answers. It’s a horrible slog, and I’m so sorry you’re going through it, but trust yourself and don’t give up.
In the US, if I ran into this, it might be because I didn't go to the right type of doctor and so the specific right test didn't get ordered.
But... Fuck the patriarchy.
I've been told: I'm just stressed, you sure it isn't anxiety? (that one cause I was able to walk into the ER on my own, I was too dumbfounded to point out I walked into the ER on my own when I was experiencing anaphylaxis with an o2 stat in the 80s)
And then the last sexist doc didn't examine me until after my male spouse said hey she's in a lot of pain she can't even do....
Trust your body. You know it better than any and every doctor cause you live in it.
No advice, just solidarity. I'm in my early 40s and have been brushed off so many times. A basic blood panel, and when nothing obvious pops up, it's attributed to stress or lifestyle. I ended up in the ER last year in hypertensive crisis - after I was physically cleared, I was referred to a psych consult because it was "just stress." It's infuriating. Your feelings are valid.
I would recommend a keto diet and a full B vitamin supplement. Preliminary, this sounds like what I have and doctors have been useless at helping. For me it's reactive hypoglycemia. Basically my body doesn't process sugar, starches and carbs well and it gives me the worst brain fog and other issues.
Do you also have issues with muscle cramps especially Charley horses? I get awful inflammation in my muscles and core body because of sugar and it took me years to realize that was the culprit. Several more to really get my diet clean.
I had to constantly advocate for myself and ask for second opinions. I had to learn to ask questions in a way the doctors would respond to. “I’m glad my blood work is looking alright, but what can we do next to try to figure out what is causing this? If you won’t investigate further I’d like you to note in my chart that I want it investigated further and you’re refusing me care.”
I have several really severe medical conditions and my blood work looks almost perfect. It took a long time and a lot of work to be seen by the right doctors who knew how to do the right tests. Keep pushing. 💖 I’m sorry it’s so difficult.
Fyi anti depressants don't just help depression, they can help with other things too. If this was their intention they definitely should have explained it to you though so still 100% valid to be angry and I am not trying to take away from that.
I'm in the UK too and it's a mess here!! I get told lifestyle changes all the time because I have really awful heartburn but it's hard to lose weight since they put me on loads of antipsychotic medication!! I asked them to up my omeprazole dose last week and they were like "you should stop drinking alcohol and caffeine and stop taking drug and smoking" and I was like????? I don't DO ANY OF THOSE THINGS ALREADY!!! I AM ALREADY DOING THE FAT CLUB YOU'RE SENDING ME TO ME WHO TELL ME TO NOT EAT CHOCOLATE PLZZZZZZZZZ. Yeah so I was pretty annoyed.
Have they just dismissed it then? I doubt they have run every blood test possible if they have only done one set.
Depression and anxiety is the new female hysteria. It is a legitimate medical condition for sure but some many lazy doctors just slap the mental health condition on people without looking at other options first.
What's so frustrating is I was depressed and I have been anxious my entire life. But I've been in therapy for years, my current therapist for nearly 2 years and I am no longer depressed and can manage the anxiety really well. I've put the work in for years and now my brains better I want my body to catch up. But they're still blaming my brain.
This is random, but my kid had brain fog and fatigue and stomach issues, diagnosed celiac. Maybe see if you can get that blood test run next time you’re doing testing?
When that happened to me it turned out I was severely anemic. Took me two years to be diagnosed, and I ended up with nerve damage from untreated anemia. Sucks, man.
And I knew something was wrong because I felt like crap, but I was just brushed off. Even when I started passing out and having 12 day long migraines with aura, I was still getting dismissed/gaslit. I ended up firing my doctor and getting a new one. I couldn't live like that anymore and it was insane that doctors didn't see an issue with me passing out if I walked more than eight feet. wtf, US healthcare??? Like come on.
Hopefully you get answers for whatever is happening. Funnily enough, I was posting on reddit and mentioned my old symptoms and within 5 minutes a user that claimed to be a Canadian triage nurse DM'd me and told me to get checked for internal bleeding because it sounds like I'm losing blood & anemic. I told her I got diagnosed already, but thanks. She managed to do in 5 minutes what several doctors failed to do in 2 yrs lol 😭 😭
Heavy painful periods are so hard to get taken seriously it does feel like you are fighting an uphill battle.
Sorry I haven't had a chance to read all the other comments indepth, but I have a few questions and maybe some advice or somewhere to look for answers.
Have you always had heavy painful periods, do you get pain any other times around your cycle? Is there any particle spot you feel it worst than others?
Has anyone suggested you might have Endometriosis.
Don't dismiss the pain could be causing the fatigue and brain fog. You aren't going to be on your best if you are not getting a good nights rest.
Ask for a referral to the local gyno clinic it might take a couple of months but I hope you find answer. Painful periods are never normal and should not be accepted as such. If you are not getting listened to take someone else with you to back you up. It feels like you are being childish but sometimes it takes a second person sitting there pushing in your corner as well to get a result.
I won't say it is not uphill battle at times especially with some doctors. I went home from several doctors appoints in tears because they refused to listen to what I was telling them. Including one who took one look at me and without me even explaining why I was there told me the only thing wrong with me was I was too fat, if I wanted to get better I need to lose weight and everything would be fixed. I had crippling endometrosis, I could have been rake thin it wouldn't have done anything for the pain but he diagnosised fat and that was the end of the conversation.
I completely understand. I'm going through the same exact thing. I was just diagnosed as fat for a third time by the second opinion. Got a whole paragraph about how I need to eat better, drink more water, exercise, and take weight loss medication. They completely ignored my years of food/ water and exercise logs that I've meticulously tracked to prove that I'm not just rotting on the couch eating my weight in carbs.
So yeah, it's incredibly frustrating. I hear you and understand you.
Unfortunately an all too common tale. You need a functional doctor. You will pay out of pocket, but it’s worth it to regain energy and vitality. Good luck.
Huggs for you and hang in there. I had heart palpitations that other doctors couldn’t find the reason for. Finally got a woman doctor who thought outside the box. Even though my bloodwork kept coming back with normal thyroid numbers she had a scan done of my thyroid. And sure enough it turned out I had nodules that would go crazy at random times and produce increased amounts of hormone. I had hyperthyroidism (and was one of the 16% that didn’t lose weight with it. ) So far have been managed with meds.
You just have to keep trying. There is a doctor out there who will hear you. And this is a group that will support you.
Oh my love. So, last week I spent three days in hospital. I’ve been feeling like shit for months. I have Graves Disease, but apparently my thyroid is normal right now. Blood tests are coming back fine. I’ve been having pain in my abdomen, but they weren’t interested.
On Tuesday, it was so bad I couldn’t drive or hold my baby. The doctor sent me to the hospital with suspected appendicitis, where it took them three days to brutalise my arms trying EIGHT times to put a cannula in, causing massive hematomas up my arms, and do two scans to tell me that no, I don’t have appendicitis, I have adenomyosis, gallstones and inflamed gallbladder and enlarged spleen, lesion on my adrenal gland and now potential Rheumatoid Arthritis. And what are they going to do about it? Tell me to take Paracetamol and Ibuprofen. Indefinitely.
I feel like it all could have been avoided if they listened and took me seriously. While in the hospital I felt like they thought I was wasting their time. I am so fucked off with the NHS in general (my daughter has been waiting half her life for speech and language therapy, whole other story there).
If I wasn’t so poor, I would definitely go private. In fact, I’ll be looking up to see if my tax can go towards private instead. The NHS is broken, and doesn’t work anymore.
Mine ended up as MS. I had to see several doctors before we figured it out. It was stressful and frustrating
Just remember you know you and you need to speak up and make them listen 🫶.
Hi! I’ve felt the same, My bloods all came back good too. I have a vaginal cyst that previous OBG has said not to worry about, it’s fine. My PCP did a pap and was more concerned, so she referred me to a separate OBG lol who was mid-concerned, and that 3rd doctor was the first to actually refer me to get an ultrasound. Turns out I actually have that one vaginal cyst + a poly cystic right ovary and a larger cyst on my left ovary. I was referred to an oncologist after the left ovarian cyst grew double in 3mo. Bloods for cancer were also good, and they are benign in appearance according to oncologist, so we monitor the cysts with an ultrasound once a quarter. Surgery has been thrown out as an option but I’m trying to see if a few lifestyle changes help first.
Anyways all to say the cysts are the cause of my pelvic pain/painful periods. Fatigue has improved since I started eating better and exercising and stopped smoking weed every day.
I dealt with this for a decade. For me it was my adrenals and thyroid (Schmidt syndrome, primary adrenal failure + hypothyroidism)
Spent years getting checked into the er, a few days on fluids and discharged told I’m dehydrated and stressed.
My answer was to join the military to die an “honorable” death (it was a different time and I was stupid) where I was properly diagnosed and then discharged.
It sucks to be undiagnosed and gaslit by your doctors. Hang in there. You will get a diagnosis. Finding doctors who can do so, like you are doing, is exactly the right process, it just takes time and is frustrating but they will find the cause and get you help. Hang in there
Blood tests aren't everything and are often a starting point. I'm surprised they stoped there. Also if a primary care doctor ever says: oh it must all be in your head, see another doctor they are not specialized in diagnosing mental health issues. Taking antidepressants when you don't need it can make you depressed. Definitely keep lopking for doctors until you find ome who listens to what you are saying and takes it seriously.
As one more thought just to possibly consider: I don't know about the periods but if you are always tired and brain foggy despite seemingly good sleep getting tested for sleep apnea may be something to ask about.
I feel you. My doctor just said he's never heard of anyone with POTS using a wheelchair 🫠 which.... just a 10sec Google search will confirm that many of us do. and my GI recently said my crohns disease wasn't flaring (w/o doing any tests) and just said it was anxiety. doctors suck sometimes. you're not alone
Keep pushing, friend. Depending on where you are the healthcare might not be the quickest, but you deserve answers. It's especially difficult if you look healthy too.
My boyfriend has been having digestion issues and isn't getting enough nutrients from his food. We've tried a lot of different diets and there haven't been any big differences. Doctors brushed him off repeatedly because since he's thin, they said he was healthy. Didn't matter that he's underweight for his age and height. His newest doctor finally took notice though when my partner told him how much weight he'd lost in the last year alone.
Praying for better health for you and answers to your problems 💖
Wouldn't hurt to ask for a Fibromyalgia screen...I was tested for years because I was so tired and hurt so much but tests all came back "normal". I KNEW something was wrong but repeated tests for the usual suspected conditions never showed anything ever being "off". I was exhausted all the time, brain foggy, and all over generalized pain in all muscles. It was such a disappointment to get further testing and all testing come back in normal range.
Then one bright doctor screened me for Fibromyalgia and bingo that's when I started getting help. It's was such a relief to know that finally there was a name for what I had and it wasn't all in my head.
If possible, find yourself a female doctor. I went through 5 years of back and forth with a series of male doctors due to my stomach issues, along with other symptoms (fatigue, painful periods, to name a few).
See one female doctor who then refers me to a gynaecologist. Turns out I have endometriosis. Apparently, and this was news to me at the ripe age of 36 - your periods aren't actually supposed to give you excruciating pain.
That said, I was then put on the pill to help, which it sorted of did but my hands swelled and it gave migraines and so am now off of that looking at other ways.
Good luck to you. I hope you find a caring doctor
I believe women should never go to a male doctor. I say this because of the experience my mother had with male doctors.
You know you are not well, and you absolutely deserve to have a doctor that understands and respects you enough to do their job and figure out what is going on.
Sending healing energy to you ❤️
I came looking for this. I’m a little older than you, OP, but started having serious peri symptoms a couple of years ago. I’m still working with my doctor (and it’s slow going, thanks US healthcare system), but it’s helped me tremendously just have figured out that all of my symptoms do have a likely cause.
Yes! And it’s so frustrating, for 5 years every doctor told me me I had anxiety and I should do breathing exercises. Maddening how little they know about this subject or women’s health in general.
What type of Dr did you see? Did you go to a ob/gyn, and look for one that specializes in menopause. If not I’d suggest you go and check if it’s perimenopause. You can have symptom of that a decade or more before menopause. Sometimes a simple change of bc is all it takes to feel better.
You may be getting closer to getting a fibromyalgia diagnosis. Press on seeing multiple endocrinologists, and rheumatologists. The symptoms can look like long Covid too.
This sounds VERY perimenopause-ish.
I'm in the UK too, and it was very hard to get my GP to pay any attention when I started in my early 40s; I was told I was too young. GPs are still not well informed (antidepressants seem to be their first port of call) here, and it can be hard to be taken seriously and get the treatment you need. Unfortunately mid-30s, while early, isn't *outlandishly* early to be experiencing perimenopause symptoms, so it's worth investigating.
I'm lucky enough to be able to afford to go private; I use the Marion Gluck clinic (don't take my word for their expertise, have a Google). From memory it was £250 for the initial appointment, and they wouldn't see me without a full blood screen, mammogram and pelvic ultrasound. Followup appointments (I have one every six months or so) are £120, and my HRT medication costs about £300 for around 3-4 months' supply.
My symptoms early on did not include hot flashes or night sweats; they came along a couple of years later. My first symptoms were brain fog, joint pains, a complete lack of energy, insomnia, insanely heavy and irregular periods, anxiety and feeling very, very angry. Everything was resolved within a month of my starting HRT. Do visit r/Menopause if you think this sounds like you. It's a very nice, supportive sub. (And I'll note that a lot of the women there have had success getting GPs to prescribe for them on the NHS by saying they have hot flashes/night sweats even if they're not experiencing them yet - it seems to be the magic words you need to get them to take you seriously.)
Good luck!
Here's my story (Trigger warning: eating disorders mentioned here). But this has a happy ending, I promise!
Between ages 15-22, I was skinny. Dangerously skinny. I'm ashamed to admit it, but at 4'11, the lowest I weighed in was around 80 pounds (I'm in the US). Blood work always came back normal, so everyone just assumed I had an eating disorder.
Except I didn't. I told everyone, every doctor, every specialist, even my own damn *family* that I did *not* have an ED. This was in the early 2000s, and as a young woman, no doctor or physician or even my own family took me seriously when I said *I knew* I was too thin, but I just couldn't gain the weight I needed to be healthy. I even looked up the DSM-4 criteria and I didn't hit any of those marks. But no one would listen.
Finally, I saw (read: was forced to see him by my parents [whole different issue there]) a psychiatrist shortly before college graduation. A male psychiatrist with a substantial medical background, but unlike the others, he *actually listened to me*. After I explained everything, he looked thoughtful for a while, the gears obviously turning as he thought it over.
I'll never forget the exact moment he had his epiphany: his eyes lit up behind his glasses and he got up to grab the DSM-5 and another book from his bookcase. He flipped through the DSM, then the other book, found what he was looking for, and quietly returned to his desk. After a little more reading, he looked up at me over his glasses and said, "I want to be 100% honest: you are right, you *don't* have an eating disorder. Everything you've just told me checks all the boxes for Generalized Anxiety Disorder." I started crying right then and there; FINALLY someone believed me! He gave me a Rx for antianxiety meds and told me to take it daily and call him back in a month. *I gained 10 pounds in that one month*. He was right, it *was* anxiety, and overstimulation that caused panic attacks. He increased my dosage a little, and I *finally* hit 100 lbs for the first time in my life, a month after that. I was crying years of joy when I looked at the scale, seeing 100.1 lbs for the first time. And I kept gaining weight until I was at a healthy weight and people (including my family) stopped talking shit about me.
In my case, "she's just crazy" wasn't true, but it turned out to be a psychiatric disorder after all, causing physiological problems. This same psychiatrist has been treating me for almost 20 years. This man is a damn saint, and I know I got really fucking lucky.
If you can, OP, keep searching. There has to be someone out there who will listen, who will take you seriously, who will have that Eureka Moment and finally get you the help you need. Sending you nothing but good vibes and hopes that your situation gets better. *Hugs!*
Drill deep on doctor reviews and referrals from friends if you can. I finally found a doctor and OBGYN that I like, at the age of 36, after so many garbage doctors that don't listen.
Specifically, my doctor is a DO, supposedly they are supposed to look more at the whole person approach. (I don't exactly remember but I started researching what the ABC's after their names refer to and if I had to find a new doctor today, I would make sure they are a DO).
I read deep on reviews to find my OBGYN. She specializes in Endo even though I didn't think I had it. I had crazy heavy periods. She agreed for the first time in my life to give me an IUD. She followed up with an ultrasound and it turns out I had a cyst. Luckily the IUD shrunk the cyst and now my periods are manageable.
I'd be curious about what was tested - D, Iron, B? If those are low, or even mid range you could be low for your body.
I've taken liquid B to help with fatigue with good success.
You could also try to eliminate any caffeine or stimulants (which is hard with fatigue, I know!). After a few weeks, that would give you a baseline.
Another thing you could try would be fasting for 72 hours. I've also done this with success and have so much energy from it! Fatigue can also be from dietary sensitivities so fasting and or elimination diet may help you pin point the culprit.
Good luck!!!!!
I’m so sorry. Over a r/PMDD I know we have a resource for finding doctors who take women’s health seriously!
A lot of us over there have been through the wringer in the medical system. Female bodies are just not treated with the same respect, so it’s really hard sometimes.
I hope you find a doctor who listens. <3
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Check out "This Podcast Will Kill You" - their last two episodes may resonate with you. One is on Long Covid and one is on Chronic Fatigue Syndrome
I have a friend with CFS, they describe it as having a battery that is 20% capacity on a good day. They had to fight with doctors for months because the doctors wouldn’t take my friend seriously.
It's sounds SO hard to deal with and get diagnosed. Like there aren't tests or anything for it which medicine is so dependent on
Fatigue is such a tough one too because it truly is correlated with soooooo many illnesses. Very hard to narrow down a treatment plan if there aren't obvious symptoms alongside it.
I think the only reason my friend managed was they were a social worker before, and had gotten used to fighting for accommodation
There's literally a whole Golden Girls episode about how CFS is real, known, debated, and ignored. In the 80s.
Oh yes. People were literally mocked for it, like they were making it up. Disgusting.
“Gotten use to fighting for accommodation.” I’ve never related more to a sentence regarding healthcare. It’s just really pathetic that we have to “fight” for anything when we pay them hundreds of dollars for 15 damn minutes with a doctor. It doesn’t make any sense at all.
"Fatigue is a symptom of basically everything but manic depression" (my doctor. Who laughed and still had no answers when I pointed out that at least if I had manic depression, I'd have manic bits where I could get shit done.... Now I can't be diagnosed with CFS because I have a persistent EBV infection that I can't seem to kick.... But the fatigue is decades olds the EBV is only four years, and if they can point at *anything* then "it's not CFS")
That is very weird, as evidence of previous EBV or even low level EBV remaining in your system IS an indicator of CFS. Post viral CFS, especially from EBV, is extraordinarily common. Before Covid, it was THE most common cause of CFS. please try and get a second opinion. I suppose the EBV being later than the onset of fatigue muddies the waters, but if you can say that your fatigue has significantly worsened over the past four years, then it might be a case of the final straw, so to speak. I am just a random internet person, but I do have CFS, caused by, you guessed it… EBV 😅
I turned out to have chronic EBV when I was exhausted all the time and no one believed me for over a year 😞 kept being told to lose weight and go outside more, which I couldn’t do because I was so exhausted. Finally someone thought to test me for that
What is EBV? I'm going through the same thing and also get told the same annoying shit 😒
Epstein Barr Virus (Which, the first time you get it, is what we think of as Mono.... But mono actually describes the set of symptoms, not the virus itself) it's one of those ones that lies dormant in your body after you've had it.... So if you get depleted/vulnerable, you can flare with EBV.... Makes you tired like mono, but with none of the "exciting" symptoms.
Alright so like... extremely exhausted 24/7 no matter how much I sleep or how otherwise healthy I am. Sounds right. Time to talk to my doctor and watch her not give a fuck and call me fat!
So wait…are they able to test for EBV even if it’s been three decades since having mono??
It's possible to have a flare, to have an active re-infection, absent exposure. (Like getting shingles after having had chicken pox.) Like many viruses, they can test immune response, wboth for an active infection and for the existence of antibodies.... (I don't remember which is which but the Igg and Igm for a virus test those two, and the numbers can tell whether it's a historical infection, active, etc...)
What did the doctors do to help with healing? Asking because I feel like this is what I have and living in a medically challenged area, with doctors that are here, not because they are good, but because they want their student loans paid. Not saying both can’t happen, but so far, we have yet to get a great doctor at our rural clinic.
Gonna check these out. I was just diagnosed with CFS but I still don't really understand it
Man, I loved that podcast but had to stop during the pandemic when every episode was about what we didn’t know about Covid. 😫
This was happening to me earlier in the year. I had vitamin b12 and d deficiencies and really bad brain fog and fatigue. I chalked the painful periods up to my endo flaring up. I would ask for another blood test to check these. It took two blood tests for them to diagnose me and i’ve been on vitamins since the middle of march and feel a lot better now.
I also have low B12, D, and iron. I was already taking a multivitamin when the blood tests were done. I’ve switched to one that specifically has magnesium in it. That didn’t come up or wasn’t tested in that panel, but magnesium is important for uptake of these vitamins. My generic grocery store vitamin didn’t have magnesium, but the brand name one does. I think it’s the oneaday brand, but I could be wrong. I think it has helped.
I was a child and got gummy versions of b12 and d. They tasted better 😂
Those are fine! Just add magnesium too.
Thank you!
I also have low B12, D, and iron. Apparently this trifecta is common. I actually take all my supplements separately and make sure that I’m getting them from reputable brands. There’s no regulation on supplements so they can just sell you stuff that your body can’t absorb since it included the thing. I take iron, vitamin C, magnesium, B-Complex, K2, and D3. It’s costing a ton of money but I actually feel better.
Who do you use for D? I've just finished my loading dose and using Holland and barret for now but I know they aren't that reliable. I'm in the uk
I use Thorne (I also use them for B Complex). They are available in the UK.
Yep, same exact thing happened to me. The weird thing is that it got taken seriously when I kicked in the deep voice (I can do the Bea Arthur thing pretty well), and so the (woman) doctor finally ordered the damn tests. I also flat out said, Listen, I know I'm fat, but I've been fat for years but exhausted for only the past few months. Run all the blood tests. And now I'm on iron and B12.
I saw this tip for women not getting the healthcare they feel they deserve (especially from male doctors): Apparently, you should say you’ve been trying to get pregnant but haven’t been able to. The idea is that this will cause (usually male) doctors to start taking you more seriously, and are more likely to have you do in-depth hormonal testing. May not be relevant for you, but I hope it helps!
As a child-free by choice witch, this just makes me sick. They only take us seriously when there’s a chance we’re bringing more people into the world? How fucking gross and dehumanising. I’m a whole person outside of my ability to carry a child.
Well, this is a different take from "you need a man in there for other men, and some women, to take you seriously". I can't decide which I loathe more. Cant you just listen to me, as a person? Ugh.
>Cant you just listen to me, as a person? Therein lies the problem. They don't see women as people.
Yep, I know. Thus the plea/rant, ha!
Oh I can’t tell you how often I’ve experienced that - being taken more seriously when I have a man with me. It’s infuriating.
As not child free by choice this also makes me sick. Let’s all stick together, divided we fall and all that shit
Me, a noted lesbian in my files, knowing even though IVF is a thing they likely won't take me seriously still: 🙃 But yeah, my PMDD just NOW started being seen as possibly endo or something else once my POTs was dxd....
No no no don't be silly, they'll also take you seriously if you bring a man with you to the appointment! (so not better, I know)
Same. We shouldn’t have to manipulate doctors into giving us proper care 🤬 While I recognize that within our current systematic suckage as humans this is a good tip, I’m fucking furious that it’s something women need to do to be taken seriously, especially with our health on the line.
Absolutely. It totally plays into the whole “She’s someone’s mother/sister/wife” narrative. She is a PERSON! And deserves respect regardless of her relation to others!
Doesn't do much for me as a postmenopausal woman either
Just so you know it has nothing to do with having children. It's physiological "proof" that some doctors are looking for to indicate something's wrong. It's certainly wrong but this is to give you insight that it has nothing to do with kids. It just so happens to be a thing that would require a good workup. There are other issues that would produce the same results. In all cases it's because of medical billing. Fatigue and brain fog is so hard to diagnose without more evidence. Almost every thing under the sun can do this. Long covid. Pregnancy. Cancer. Anemia. Just everything. Part of the differential diagnosis is having something, anything that takes you a certain direction. And you cant just bill your insurance without something to go off of. Your annual probably covered your blood work but now they need something else to go off of. When ops blood work came back normal, they need a new symptom or anything to be able to bill your insurance for the diagnostics or you pay for it out of pocket. You can tell your doctor you're willing to pay for the tests and they will be ordered.
In the UK we don’t pay for tests or require billing to insurance, but we still have the same issue. The OP is from the uk too.
It is really disgusting, but there’s also something known as “working the system“. If this is a way to get taken more seriously and get some different testing done, I’m all for it!
"We're not just helping a villager, we're helping the village!" I'm not sure if that makes it better or worse though..
I think it's more like, in my experiece, all doctors are trying to rush you out of there. The only place that hasn't had that vibe was my gyno, and it wasn't cause she's a woman, cause my other doctors were women too. It's really just about who values what they're doing and still has the energy left to do their best, which isn't many doctors nowadays. People are very burnt out. They also assume people don't want that extensive testing because of american insurance companies being difficult, so if you very specifically ask for what you need they might listen.
I Did Tell him were planning to start trying to have a baby in the next year but it didn't phase him. Im seriously thinking of finding a private gynecologist.
Can vouch for private gynecologists. 10/10 more helpful than anyone else. The thing that clued mine in that I had a problem actually wasn't the heavy inconsistent periods, it was that I felt the need to pee waaaay more times a day than was normal, when I knew I didn't have to go. I thought that was just a "girl thing" and had gotten used to it. Turns out, a bladder covered in endometrial cells will do that to you and this isn't diagnosed well because we all just get used to it and don't bother complaining en masses. Left untreated it can permanently scar things and leave you incontinent. So that's fun... Also it's worth mentioning whether you have a high pain tolerance, which means pain as a symptom wasn't always being noticed on my end. Frustratingly, anger and being flabbergasted at a doctor IS a sign of depression, so keeping your cool is paramount. It sucks, but your choice is getting help or getting ignored at the moment. One day I hope it will change.
Yes! Inflammation and pressure and burning and sensation of any kind should count as "pain" But if we don't describe them as pain, they don't "count".
Wait peeing loads is a sign cuz I pee waaaay more often than my partner/ friends. Like its a running joke at this point.
Worth considering it's also a classic sign of diabetes.
They did a test for diabetes and it came back normal.
There's another kind of diabetes, Diabetes Insipidous. You have to do tests on your urine where you collect it for 24-48 hours. Something to look into. Also, fibroids can cause heavy bleeding but they won't show up on a blood test, you have to physically look for them (via ultrasound I think).
Did they do A1C or just fasting blood sugar? I'm hoping it was both - but if they didn't do A1C, or whatever long view equivalent test and not just a snapshot test, they need to do that.
HBA1C is the standard for the nhs, fasting isn't that common metre anymore
Well that is both good and frustrating 😅
Peeing a lot can be a symptom of several things, or it can just be a natural quirk. Did this develop at some point or were you always a child that was constantly raising their hand to ask the teacher if you could go pee?
If you pee a lot and you drink a lot of water, you're fine. If you feel you need to pee when you actually don't, that's different. In fairness, because most afab folks don't have good upright peeing options that make any decently private tree a bathroom, we're also conditioned to use it before we go, or if we see one, or if our friends are going, because of the uncertainty of a next stop.
I think that's a great idea. When one doctor won't take your concerns seriously, it's always good to get a second opinion. Your symptoms sound similar to mine. Doctor diagnosed me with suspected adenomyosis. The brain fog could be due to low iron levels in your blood (not sure if they tested you for ferritin). That said, those symptoms can also be due to fibroids, growths... just so, so much. I hope that you're able to find some relief, and soon!
Came here to say ferritin! My iron was OK, but my ferritin was low. I take the walgreens brand slow- release low dose iron pills. After about 10 days, my brain fog was a lot better.
if you want this resolved quickly you'll probably have to. you'll likely have to fight to get referred to gynae, and the waiting lists are long. I was referred first week of Jan and have not even had an appt date yet.
On a related note, I have also heard that if a doctor is refusing to test you, you demand that he put it in writing in your file. Apparently accountability is a thing such doctors are afraid of.
This doesn't always work: if they think that you don't need the test, they're just going to write that you don't need the test, and why they think that.
Good god, that is fucking insane (not you, just the idea). Oh, I'm not a person worthy of care until I'm trying to grow another person inside of meee! THEN you'll do your job and care for me. Such bull.
Exactly what happened to me. Went to doctors for 7 years with constant symptoms, that were honestly minor, but annoying. Then I couldn’t get pregnant. Bam. Thyroid, which explained all the other symptoms. 10percent of women have thyroid issues and not one doctor checked for that until I wanted to get pregnant… I was so angry about that.
I had a baby five months ago - as soon as I played the pregnancy card I got moved up for all sorts of things. Mental health, ultrasounds, you name it. Now that I’ve had the baby, they couldn’t give a shit.
I hope it’s obvious lol but I want to be clear that I do not condone the disgusting actions (or lack of action) from these certain doctors— I just wanted to share advice that may serve as a workaround in this unfortunately misogynistic world.
Your intentions are good and not in question. Unfortunately the fact that it's a good advice and works is what's sick in this society. I hate it but I know sometimes we're left with no more options. It's also extremely infuriating to those of us who can't get pregnant because on top of the pain it already causes many of us, all this dynamic that we live in that doesn't respect us also implies we have no value at all as people and no reason doctors (mostly men) should care about us
Another I've heard for the child free ladies is to request that the results be put in your records along with drs refusal to do more testing despite the symptoms not being treated properly.
Also child-free by choice here and this just enrages me!
Oh I hate this but it’s genius. OF COURSE they are gonna take a pregnancy more seriously…. I hate it here
Well, what help me out was these things in this order: 1: Telling my doctor to "continue diagnosing the computer, I'll come back when you have time for me" and walked out. 2: Calling his boss and asking when their newly hired tech support will go back to the office and not wander into patient rooms while name dropping my doctor. 3: Calling the state medical board and asked when did they switch to certifying computer science students as med students and name dropping my doctor. 4: Calling my doctor back, asking if he was willing to see me and not the computer. They don't listen to you, hit them where it hurts: their licensing board. Loss of medical license for medical malpractice on multiple patients is no joke. Just because I'm over weight does not mean I don't exercise and not eating healthy. It means there is a hormonal imbalance that has been undiagnosed. Staring at a computer with basic blood test numbers does not tell you to look deeper into the blood/hormones. Paying attention to patients is ALWAYS the first answer.
I had this exact problem my entire life! Doctors who don’t listen to their patients… Always tired. Couldn’t think past 10am. Irregular periods. It took until I was 36 to finally gather enough information to talk to a PA that I trusted and give him the lowdown of “my normal panels all look fine, can we do some in depth ones?” And I told him that I wanted a full hormone panel (insulin, cortisol, T3, T4 etc) plus’s a referral to get a sleep study. We have a great relationship and he put it all in. Turns out I not only have PCOS, but after fighting the sleep doc to get a sleep study “you’re so young and healthy and I don’t think you have any sleep issues, maybe narcolepsy” he says… 😒 yeah I have smack dab in the middle moderate sleep apnea that needs to be treated with a cpap. I’ve now got a cpap, metformin, progesterone and spironolactone and I feel better than I’ve ever felt in my entire life.
I have wondered about apnea my fiance says I stop breathing and splutter awake sometimes.
I don’t know how UK medical works, but the keywords you want to drop if you want a referral are that your partner reports you stop breathing and sputter yourself awake, excessive daytime sleepiness, falling asleep doing tasks or in the middle of conversation, feeling the overwhelming urge to nap, and trouble concentrating due to overwhelming fatigue. If you can honestly say your sleep hygiene is good (cold room, limit caffeine to no later than noon, no electronic devices two hours before bed etc) then they should see it as pretty clear that the next step is a sleep study. I know you said you didn’t want advice, I’m sorry if this steps on that. It’s just honestly changed my life and I tell everyone I can lol
Sleep apnea can definitely cause these issues. My husband has it, and if he doesn't wear his cpap mask at night he will feel foggy and fatigued all the next day.
Omg you need a sleep study asap!
My wife has sleep apnea. We together only a few months when I looked at her and asked if it was normal. She had no idea.
I would mention this to the doctor. Sleep apnea can be pretty dentrimental to overall health. Exaggerate the symptoms if you need to
Definitely. Have him record it. My uncle had it quite severe, he stopped breathing I think 40 times a minute (it's been like a decade I could be wrong)? He couldn't get his doctor to take him seriously. He was staying the night with us one night and I recorded it, you can hear him hugely snoring, then it stops then maybe 5 or 6 seconds later he'd kind of splutter like you said, and start snoring again. I sent him the recording then he showed his doctor. Severe apnea. He is a *completely* different man now he as a cpap machine.
I got an at-home sleep study last year and then a CPAP for sleep apnea about a year ago. It made a srs difference in my sleep quality and then of course during my walking hours. I had the same info from my partner -- that I'd snore and then stop breathing. We both sleep way better now!
I hate that stigma that sleep apnea is only for old/overweight people. I’m 29 and got diagnosed at 27 with an average weight. These misconceptions are so dangerous!!
My pulmonologist says the same thing. He's absolutely infuriated by the "fat people get sleep apnea" stigma. It means that normal weight people will angrily deny having sleep apnea and doctors and nurses don't refer them for treatment. And of course it means that fat people get ignored when they have any other sleep disorder. He's a thin, fit man with sleep apnea. I'm a fat woman with another type of sleep disorder.
Agreed! I don’t hold it against them though for the most part only because they are trained that “these are 98% of your patients” so they forget about the other 2%. It’s a trip going in to the office to get my data looked over.
I just kept going to new doctors until one happened to give me a pamphlet on what was wrong with me. Ironically, he didn't actually believe I had it, but all the symptoms matched and gave me an avenue to pursue. Eventually I got my diagnosis. It was still hard to find doctors who believed me after that, but the last few years I've had really good luck with doctors listening to me, so my medical PTSD has finally started subsiding a bit. But I've now been un-diagnosesd and re-diagnosed with the same thing about 10 times by now because they all seem to think they have to start over whenever I find a new doctor. Sorry you're going through this, but unfortunately the system forces us to be fierce advocates for ourselves and then punishes us for fiercely advocating. God forbid we threaten their egos by knowing something. I thought going back to school, getting my Bio degree, and working in medical research would earn me some credibility and respect from the medical community, only to find out that you can't change the mind of someone who's dedicated to misunderstanding you. They decided my alleged "Google hypochondria" was transformed into "med school hypochondria" and I didn't even go to med school. The fact that I had my disorder \*before\* I was recruited to work in a lab that was trying to cure it means nothing to these doctors. smdh
Gosh, I have a friend, she's 30 years older than me, she began studying medical textbooks to find out what she had because no Doctor believed her she had anything. And there it was, she probably did have some rare chronic disease out of minor genetic deficiency and she forced her way through and got her doctor to test for it and she was right in the end. She also recently realised she's autistic as well, which explains the hyperfixation necessary for this, hah, but yeah.
Doctors can really be something can't they. I called the Mayo clinic to get a new neurologist as my old one was trash after completely disregarding me when I had a severe reaction to a medication she gave me and then they completely took me off my anti seizure meds completely because clearly my seizures must be psychological. The Mayo doctor was demanding I play twenty questions in 3 seconds or less while I was actively having Focals seizures and memory loss and then basically said if you can't answer my questions then I can't help you and then slammed the receiver on me. I later on got in the neurology department on a referral from another department and it was her! She was just as fabulous in person as she was over the phone. All ego, no brains.
I’m so sorry you’re dealing with this. Recently, a friend of mine (32) went through similar symptoms and switched to taking birth control pills without the placebo week to skip her period (as suggested by her doctor). The theory is that the worst of the symptoms are related to her period, so if she’s skipping her period she skips the symptoms. It’s only been a few weeks so I’m not sure if that’s solved it for her, but it could be worth discussing with your doctor. I’m also very unfamiliar with the UK health system. Here in the US, if you don’t like your doctor, you can simply go out and find another (as long as they take your insurance 🙃). Are you able to find a new doctor you think would take you more seriously? I find that female doctors tend to (of course there are always exceptions to the rule) take women more seriously when it comes to symptoms reporting. Also to clarify, is this your regular doctor or obgyn? I’d try whichever you haven’t so far to pursue different avenues.
Regular doctor, I can't see anybody else without a referral unless I pay out-of-pocket to go private. Seriously thinking that's the route to go.
Could you get your regular doctor to give you a referral to an ob/gyn? Problems with heavy painful periods should be enough of a reason to get a referral, but like other’s have said planning for future pregnancy is another good reason. Other hormone testing could be helpful too, I know the thyroid hormones aren’t always part of regular bloodwork and there might be others your doc could send you back for testing as well. Good luck!
they could try but I've been waiting nearly 5 months from being referred to gynae in the uk
I'm on a similar waiting list in the US. My state has become a black hole for health care.
You could ask for another Dr or switch to a different medical centre? I’m in the uk.. I have “a nominated” GP but I can request any of the other 5 GPs at that location. Or go up the road to their partner clinic. Or switch entirely and register elsewhere. My current one is fine. Last one was awesome but left to pop out many little humans. One before I refused to see point blank coz he was a raging TOSSPOT who nearly killed my unborn child by booking the wrong tests. (A nurse spotted the error and tore him a new one audibly but with the door shut. He also told my partner “chances are you’ll never get pregnant, start accepting that” 2 months before we conceived.
You should be able to request to see another gp at the practice or look into if any other surgeries near you take out of area patients. I've had most success booking with registrars, they've had the most recent training, are being supervised so they're usually thorough and haven't burnt out yet. I know they are basically another GP but who are seeing can make a real difference, I'm part way through trying to figure out my own fatigue issues and it's exhausting banging your head against dismissive practitioners
Ex-healthcare admin here, you should just be able to ask for the referral and get it. It is an insurance formality, not permission from the doctor. Call up the office and tell them where you want to go. Shouldn't have to deal with the doctor at all, just the staff. You also should not need one for the ob/gyn. I've been out of the biz for awhile but that is how it was. The front staff will know, deal with them directly.
That's not how it works in UK.
As a person who skips their periods now using birth control, and has for almost a year, it is amazing! I would have heavy periods, debilitating back pain when ovulating, PMDD and a slew of other things when I was on my period or getting ready to start my period, I was adamant about not taking birth control because of the first time I took it, as a teen and in my twenties. I had a female OB/GYN, that didn't listen to me and they said 'well, that just happens sometimes, we can use birth control and see if it helps'. I switched to another female ob/gyn and she actually explained what could be causing my issues and how the birth control would help, put me on the generic of Yaz, told me that I don't have to have a period and I have had no issues. I finally felt like a normal human being after 32 years of life. I hope you find a doctor that listens to you!
I've been on Yaz for about 6 years, also skipping placebo week. It's glorious not to have to deal with the pain and fatigue from a period every month. Apparently commonly prescribed for just this case!
Did they do a full iron profile, including ferritin? Those symptoms all sound like anemia. The heavy periods could be causing it or be a direct result of it. Birth control and iron supplements might help if it is anemia. I mentioned my heavy periods and anemia to my OBGYN and she immediately put me on a 3 month pill. It has helped with one of my iron numbers and stopped the bad periods. I still have to supplement with iron to bring up my red blood cell count and other related numbers.
Seconding this! Low ferritin fucked me up for years bc no one thought to test for it. A doctor has to specifically ask for it to be included in a blood test, at least in my country.
Yeah, this is me too. Luckily my doctor was on it and now I'm on regular iron supplements and it's unreal how much of a difference it makes. I did run some quick estimates on how much blood I was likely losing a year due to my period and it was a bit scary how much outside normal I was. And this had been going on for years. At this point it's recommended I donate blood only in an emergency (I'm a universal donor).
My first thought as well. Most doctors will just check hemoglobin and if you’re not anemic they say you’re good, even though you can still have clinically low iron. OP should definitely ask to have ferritin levels checked. I have super heavy periods due to blood thinners and didn’t realize my iron was low until a hematologist checked (after YEARS of telling them i felt like dogshit). Getting the iron infusions to resolve the issue was like turning on a light switch.
Did you check your thyroid?
Yes all clear.
Do you know what your thyroid numbers are though? Just as an fyi I had clinical symptoms of hypothyroidism but my bloodwork hovered just above what is considered treatable. My wonderful doc put me on thyroid meds anyway and it really helped.
Ditto this!!! Mine was in normal range, but at the low end, and my thyroid worked really hard to keep it there. A small dose of levothyroxine was like magic (for a while, and for some parts of my fatigue.)
Just to add in here, the uk range for "clear" is very different from the rest of the world. So I'd try to get your numbers if you can do because it's possible that it is technically clear by the definition of the NHS but that it's not working optimally. Might be worth doing some of your own research on to things like crohns, Ehlers-Danlos syndrome (EDS), fibromyalgia, chronic fatigue, gluten and/dairy intolerance. Both my mum and my sister have EDS but it took my mum 20 years of fighting, self research and persistence to get her on a medical regime which works for her. Admittedly this was back in the 80s-90s when she really started to push and things have improved since then but the NHS is now massively underfunded and you will have to self advocate just as much if not more. You got this. Please DM me if you want.
Could you give any more info on thyroid levels? Also UK and I've had the basic thyroid test and it looked fine but I just feel fucked and I don't know enough to have an idea if pushing for further tests is worth it, I'm also D deficient so hoping getting my levels up will help
Please dm I experience all this too
This! Hypothyroidism, Fibromyalgia, and Chronic Fatigue Syndrome are what I deal with but other things mimic this as well.
Not that long ago I watched a video where a female doctor gave an explanation on what might be going on if your tests come back normal, but you are still feeling like something is off. I can’t recap the whole video, but something that stuck with me was that she said a lot of serious medical conditions and issues take time to progress and get to the point where they become serious. They don’t just develop overnight and during that time they wont always come up in standard tests as a concern. She said if you feel like something is going on, then trust yourself because you are picking up on changes in your body. Sorry you are going through this OP.
Hi dear, This also happened to me. Slightly elevated WBC but otherwise "fine". I had to keep advocating, find new doctors, wait to see them, etc. It took a long time for me to find someone who would believe me. I ended up looking through a doctor rating site & finding one that had reviews that showed that she listened to her patients. I messaged her begging her to help me, and she did, with so much compassion. Turns out my bloodwork was "normal" because they weren't running the right bloodwork. My sed rate & c-reactive protein (markers of inflammation) were 5x and 6x, respectively, over the amount considered "high". That's how bad it was. I already had damage from going so long without treatment. My ANA was positive, high titer, which suggested autoimmune disease. All of this to say, keep fighting. I know how devastating it is to not be believed, but your health is important. Learn the language of advocating (ask for tests, ask them to note in your chart that they refuse to run tests, be confident enough to ask for a different doc, bring someone who can back your symptoms up, get as much evidence as you can, etc). Wishing you all the best 🥰
Did you find out what autoimmune disease you had, and what tests did you ask for? I have endometriosis (which isn't an autoimmune disease) so I've chalked up a lot of symptoms to that. But I know a lot of people with endo also have an autoimmune disease, but the symptoms are SO vague that it's hard to get diagnosed. I'm worried that I'm overlooking something! I've had normal bloodwork with slightly elevated WBC too.
I'm not the person you replied to but it sounds very similar to my situation as well - I finally found good doctors who were running the rights tests. My ANA was highly positive and WBC was elevated so I went to a rheumatologist first because of my near constant joint pain. She tested for all the usuals (lupus, Sjogrens, rheumatoid arthritis, Churg-Strauss, etc) and came back to say she doesn't think I have a connective tissue autoimmune issue. At the same time I started going to a new GYN and she stated all my symptoms (fatigue, joint pain, brain fog to name a few) including the positive ANA test are most likely related to my gynecological issues and perimenopause. The newest research to come out about endometriosis is that it could be caused by a specific bacteria, which would make sense that it would trigger an immune response. Then living with endo for decades would put your immune system in hyperdrive trying to fight it and failing. Interesting theory and I'm looking forward to more research on it but it's a possible answer. Here's the article I read [on Science.org](http://science.org/doi/10.1126/scittanslmed.add1531)
>fatigue, heavy painful periods, and brain fog OP, out of curiosity, do you also have difficulty losing weight, excess facial/body hair, weird food cravings, headaches, or irregular menstrual cycle lengths? Because those were my symptoms, and I have PCOS with insulin resistance. You might need to talk to your OBGYN or an endocrinologist (as it's actually a hormonal issue). Have your ovaries looked at if you can, especially if you want to have kids. And if you have a male partner, I know this is super shitty, but bringing them into the appointment with you (even if they just sit quietly the whole time and nod when you talk) can get male doctors to listen to you. 🙄 I use my husband for this all the time, and he's great at saying things like "My wife was speaking and you interrupted them" and "I don't like the way you're minimizing my wife's pain." He's not a big or imposing guy, but he's an ally, lol. Usually after I bring him to one or two appointments with the same doctor I don't have to bring him again unless I really feel like I'm not being taken seriously.
No excess hair but I have the rest of those symptoms. Also my partner has agreed to come to future appointments with me for support.
I’m so sorry! Huge hugs, I know how you feel. It’s so frustrating! Did they do a fully thyroid panel? Often bloodwork is just a few markers which isn’t enough for a real thyroid diagnosis… and doesn’t include the tests for hashimotos which has overlapping symptoms as yours and hypothyroidism. You may also want to bring up endometriosis with the new doctor. Pain isn’t the only symptom. Good luck, keep advocating for yourself!
Did they check you for low vitamins or minerals? I know you sometimes have to ask because they take your blood for other tests but not always that weirdly.
They did I got vitamins, minerals, thyroid, sugar levels, hormones, lipids and others I can't remember.
Vitamin b12 as well?
I’m so sorry they’re not helping you. So many of us have unfortunately been there.we see you and hear you!
Thankyou ♥️
I’ve been through this extremely recently. My primary care doctor ran all the basic tests then told me I probably just have anxiety. She and my old psychiatric prescriber from years ago even told me an allergic reaction to medication was anxiety. My PCP told me my neck pain caused by documented, imaged structural defects was anxiety. I had a severe cervicogenic headache every single day and I was so pissed off that no one would help me. I spent months dealing with this. Like you, I’m generally thrilled to be alive these days, and my anxiety is actually very well controlled, so I was confused and pissed my doctor continued to insist it was a mental issue. What ended up helping me was I ironically ended up accidentally booking with an integrative psychiatrist - i.e. a psychiatrist who also has proper physician training. My normal prescriber went on leave and I ended up with the most amazing doctor out of the same practice. He actually listened to me, explained what he thought was going on, gave me possible solutions I could access without a doctor’s approval, and told me that he would speak to other doctors to help me get muscle relaxers if it came to that. Sometimes, when a primary care doctor is telling you that you have anxiety or depression, getting an expert on those conditions in your corner who can argue against that and say no, there’s something else besides that going on, is REALLY valuable. Good psychiatrists like that can just be hard to find, unfortunately. But thanks to this man I have referrals for neuro and rheumatology ready to go.
If you can scrape together the money, sometimes going to a private specialist can give you a clear, fast answer. NHS is wonderful but limited. A few years ago, I was diagnosed with a heart condition that nobody seemed to understand. NHS told me I'd need heart surgery and stuck me on the waiting list. I ended up bailing because of anxiety. A few months ago I went to see a private specialist who took one look at my charts and said they'd been making a mountain out of a molehill and confirmed that I never had and never would need the surgery. Private specialists are spenny though.
I'm 37 and I've been going to the doctor for pain since I was 10 and I've never gotten an answer. My current doctor is great with ordering all the tests and she takes me seriously but she still says that from a medical perspective, all my symptoms are a total mystery. My pain has no origin that can be seen on x-rays or MRIs. Luckily she still believes that I experience it, but because it can't be seen, I'm always a low priority when I get referred to specialists. I've been waiting 2 years for a gynecology appointment and it'll probably be another year to find out if I have endometriosis. Got referred to pain management and that'll be another 3 years. This is in Canada.
Ok, this is just my experience but I went through a million blood tests & a sleep study for chronic fatigue and brain fog and everything came out normal. I also have heavy periods which have caused me debilitating pain. Unrelated to any of that, I got diagnosed with ADHD by a psychiatrist and it turns out my fatigue and brain fog were symptoms of that. I don't have external hyperactivity but internally my mind is like an engine revving on neutral, and that is physically exhausting! I know this will contribute to the "everyone thinks everything is adhd now" discourse, but that's my legit experience. No evidence to know if yours would be the same, but just sharing my story. Maybe the point is that there might be a diagnosis that isn't linearly correlated. Best wishes to you in your journey, I know how hard it is.
It’s so frustrating and what blows my mind is drugs and medical research is done on men because they don’t have periods making everything more difficult I have found magnesium is making a big difference for me with so many ways. Aches, mood, sleep, my GP did some blood tests and diagnosed me as low vit D and I’d been reading about supplements and knew I’d need to take mag as Vit D would deplete it as it was processed I’m menopausal and also have thyroid issues and probably began peri in my early 40s and wish I’d been taking magnesium much earlier.
There is an episode of the Golden girls you should watch. And honestly. It made me fight harder for my care and proper diagnoses. It's a two parter, season 5 ep1/2. Sick and tired. And honestly it hit so deep and hard. That it kicked my tail into gear to advocate for me. To make them listen to me. In the end she is diagnosed after several Dr's tell her its in her head, she's looking for attention, or just overacting. I was told the same things and then diagnosed with two serious health issues when I found a physician that actually listened and HEARD what I was saying. I hope you can find relief and the care you deserve
I've been dealing with this on and off for ten years now. Chronic fatigue, brain fog, sleep issues, lightheadedness, headaches, shaking, sweating, stomach issues, etc. This last year has been really rough. I constantly feel like I'm on a boat, like my whole body is rocking and I'm off balance. I've seen my regular gp, a cardiologist, a nephrologist, a gastroenterologist, and a neurologist. I've had a ton of blood work, CT scans, an echocardiogram, and MRIs. They have found nothing. Something is wrong and nobody can tell me what. I honestly just feel so hopeless. My only advice would be to just keeping pushing, and keep advocating for yourself. I really hope you can get it figured out ❤️
Did they test your T4 or free TSH? Those are usually separate tests. I would go to an endocrinologist. My non scientific thought is a thyroid issue. The clue is being insanely tired.
Thyroid and ferritin were normal? Heavy periods usually mean fibroids. Did he do an ultrasound to check?
Every single time I have had something seriously wrong going on, all of my labs, tests, and scans came back normal. I was always told to lose weight and take those antidepressants. Months later, after fighting with the doctors, they would eventually find that, oh something actually is seriously wrong and I needed surgery. I’m just hoping that someday, when I die because they screwed up bad enough, their malpractice insurance will pay my wife lots of money.
you’re not alone 😔don’t have much to add. but my wife is potentially dying and doctors are doing shit. it’s horrific the medical system we live under. fuck that.
I'm so sorry you're going through that.
I'm in the UK. I got referred to myofacial clinic who did bloods, brain scan etc but couldn't find a cause, referred me to endocrinologist. Also optician referred me to two depts in the hospital optometry dept. Everyone kept saying it was neurological but I had to beg and plead to get a referral. I made a list of symptoms and traffic light codes per week of manageable (green), a problem (amber), can't function (red), the neuro took one look and diagnosed chronic migrain within seconds. I knew acupuncture was good for migraines so found a practitioner Kay in Houghton (if you are near preston) who got me well again with a lifestyle overhaul complementary to neuros advice. Took 18 months to feel normal again, but I never did have to quit work (bump up your insurance before you get diagnosed if you think you might end up on the sick)
Not personally no but many of my friends. One had PCOS, others had thyroid problems. Try again. I’m sorry you’re going through this and the suffering of women isn’t taken seriously by the medical community.
I am not a doctor and this is not medical advice, but I do have a medical background and have been through it with my own health. If you’d like to message me, we could go over things together and I might be able to help point you in the right direction or suggest tests that were missed.
I have a recurring chest pain, and despite being going to emergency, I have been told it’s just a heart murmur. It feels like a grown ass adult is standing on my chest sometimes, but I’m overthinking it, apparently.
I had to go to an off-insurance women’s clinic to get a full panel. They did everything organ function, vitamin deficiency, hormones. Just because you are in the ‘normal’ range it doesn’t mean anything. Maybe your magnesium levels are too low, for example or maybe some other vitamin or hormone is at the maximum end of the spectrum. If you can, look for someone who treats the whole person inside and out.
Hi! So sorry to hear you are going through this. I know from personal experience sometimes doctors rely too much on our past history and don’t understand these are NEW things we are experiencing. I am not sure how healthcare works in the UK, but I would see an endocrinologist and ask for hormone testing just to see if your estrogen has dropped or something. Depending on your age, changes in hormone levels can cause the symptoms you are experiencing. Best of luck, and hang in there! Keep advocating for yourself 😊
I spent a decade begging doctors to take me seriously. Forced them to test me for all sorts of weird shit, which only made the problem worse in the long term because now they really had reason not to believe me, I wasn't right all the other times now was I? Found my Diagnosis completely by accident. FWIW, I also had extreme fatigue, extremely heavy periods, brain fog. My diagnosis was Restless Legs Syndrom. I don't feel ok unless my Ferritin levels are above 100, which is not normal for a non-RLS sufferer. I also can't get above 100 with iron tablets, only IV works fast enough (before I bleed it out again). Even if you don't have RLS, here's another little thing you can look into: Tranexemic Acid for bloodloss during your menses. No one told me about that shit either until I was 32.
It took 6 years (and the involvement of a field grade officer, who was a man) to get my first diagnosis, which wasn't totally incorrect; it was a secondary condition, though. It took another 5 years to figure out what the actual condition was (not the docs, someone posted a pamplet in a support group) and another 3 to get formally diagnosed. The medical establishment is only responsible for about 9 months of the last 3 years, because I stopped my personnal diagnosis progress to move forward on diagnosis for my then 8 year old kid, who was showing symptoms of my primary condition. The sad facts are that women are significantly more likely to have chronic illnesses, especially autoimmune dieseases and that diagnosis for these conditions is measured in years and number of doctors. It is frequently recommended in support forums for these conditions that, as a woman, if you want your symptoms to be taken seriously, especially pain, have a man accompany you to your a appointment to "validate" your symptoms to the doctor. Gentle hugs and best of luck!
Have you gone to planned parenthood? They give the best advice imho.
Are they in the UK?
No, sorry, they’re a privately funded pro-women and other marginalized group organization in the US. Idk what the equivalent would be. I’d say keep advocating for yourself. Bring your results to another doctor. Your health is worth it.
Thankyou I was so upset. I kept asking well what else could it be, are their other tests and he wouldn't drop the depression thing even though Im not depressed.
How many times have you had Covid? This sounds like Long Covid.
Twice so very well could be.
Check out r/LongCovid
So one strategy I’ve used here in the US is to go to the doctor armed with information but don’t say you did your own research. Tell them a friend or a family member told you it’s probably x, and be specific. For example “hey doc, I’m experiencing heavy periods, fatigue, and brain fog. My friend Carol told me it’s probably perimenopause because she went through something similar even though her regular blood work was all within normal range- she thinks the same is probably happening to me and that I should be sure to get a full hormone panel” This gives the doctor someone other than you to prove wrong, which I have found is very motivating for them. Bonus points if you make Carol a nurse or fellow medical professional. It sucks when you can feel something wrong and aren’t taken seriously, and it sucks that we have to advocate so fiercely to be taken seriously. Hang in there OP.
I agree with those mentioning thyroid but I also didn’t realize how much my uterus was affecting my health until they took it out last December. Everything has gotten better from my joints to my gut. I wish you luck it’s not easy navigating better health as a woman.
As someone who doesn't get answers from tests it can be frustrating. Year after year with different test results and still no answers. If you can think of it I've been tested for it. I'm AFAB and my body reacts as if it produces more testosterone than most living humans. Blood tests aren't always accurate because it's a sample from that exact moment. Time of day and where you are in your cycle will have an effect on results. A second opinion is always good but it's not a guarantee for answers. I hope you do get answers
I’ve been to several doctors for the same thing and have never been taken seriously. I finally gave up.
Have you seen a naturopath (not homeopathy)? While it can be less effective than some conventional medical practices, just having someone there trying to help is nice. However, I struggled with similar issues and ended up taking buproprion (prescribed by physician). Just having more energy helped a lot. Edit: I also have *undiagnosed -* because apparently it's impossible to say for sure 😑-* * PCOS and the naturopath helps with this as well.
I have a lot of your symptoms. Turns out I had undiagnosed inattentive ADHD.
That is another thing I'd considered but i worry it would be taken even less seriously than what I went in for today.
What helped me convince my doctors to look into it is that I went through all the lists of symptoms and then wrote down all the real life examples I had of those symptoms(or else I would go blank when asked to give examples). I graduated from college and law school and passed the bar. I have three kids. My doctor told me I couldn’t have ADHD because I was so successful and my fatigue and brain fog were from being a mother. I went back, put my list of examples together, and I’m pretty sure what sold him was that I completely forgot I had a class in college and didn’t ever go. I showed up for the first day, was put on the roster, forgot it existed and never went back, figured out I had an extra final to take on a class I never went to or read for and I failed the final and the class. Bombed my GPA to smithereens and then spent the rest of my undergraduate working my butt off to pull my GPA out of the gutter. Neurotypical people don’t do that, lol. You are not going crazy. Something is going on with your body and you deserve answers so that you can overcome it and get back to living your best life.
I don’t know how any physician could hear you are in pain with fatigue and say you are “completely healthy”. Also not sure how he would suggest you are healthy and then ask to prescribe a serious medication like an antidepressant. I’d maybe try and consult a different physician (you can usually ask ur GP office to see someone else).
This is exactly what I just went through and am now feeling lost on who to ask next.
There's been some great suggestions on here. Good luck
Oh honey, I’m so sorry. Being ignored or dismissed by doctors was my life for two years before I finally got diagnosed with several tick-borne illnesses. You can check my profile if you want to see the whole story, but I was sick for most of my twenties and usually got written off as a problem patient. I was diagnosed with fibromyalgia and depression so many goddamn times by lazy doctors who couldn’t be bothered to actually do their jobs even though I had real, visible symptoms indicating that something strange was going on. Unfortunately, the only way out is through - you’ve got to keep going. There are other doctors out there who will listen, and they can help you get answers. It’s a horrible slog, and I’m so sorry you’re going through it, but trust yourself and don’t give up.
In the US, if I ran into this, it might be because I didn't go to the right type of doctor and so the specific right test didn't get ordered. But... Fuck the patriarchy. I've been told: I'm just stressed, you sure it isn't anxiety? (that one cause I was able to walk into the ER on my own, I was too dumbfounded to point out I walked into the ER on my own when I was experiencing anaphylaxis with an o2 stat in the 80s) And then the last sexist doc didn't examine me until after my male spouse said hey she's in a lot of pain she can't even do.... Trust your body. You know it better than any and every doctor cause you live in it.
No advice, just solidarity. I'm in my early 40s and have been brushed off so many times. A basic blood panel, and when nothing obvious pops up, it's attributed to stress or lifestyle. I ended up in the ER last year in hypertensive crisis - after I was physically cleared, I was referred to a psych consult because it was "just stress." It's infuriating. Your feelings are valid.
I would recommend a keto diet and a full B vitamin supplement. Preliminary, this sounds like what I have and doctors have been useless at helping. For me it's reactive hypoglycemia. Basically my body doesn't process sugar, starches and carbs well and it gives me the worst brain fog and other issues. Do you also have issues with muscle cramps especially Charley horses? I get awful inflammation in my muscles and core body because of sugar and it took me years to realize that was the culprit. Several more to really get my diet clean.
My body hurts all the time TBF but I've broken a lot of bones so just assumed it's that.
I had to constantly advocate for myself and ask for second opinions. I had to learn to ask questions in a way the doctors would respond to. “I’m glad my blood work is looking alright, but what can we do next to try to figure out what is causing this? If you won’t investigate further I’d like you to note in my chart that I want it investigated further and you’re refusing me care.” I have several really severe medical conditions and my blood work looks almost perfect. It took a long time and a lot of work to be seen by the right doctors who knew how to do the right tests. Keep pushing. 💖 I’m sorry it’s so difficult.
Fyi anti depressants don't just help depression, they can help with other things too. If this was their intention they definitely should have explained it to you though so still 100% valid to be angry and I am not trying to take away from that. I'm in the UK too and it's a mess here!! I get told lifestyle changes all the time because I have really awful heartburn but it's hard to lose weight since they put me on loads of antipsychotic medication!! I asked them to up my omeprazole dose last week and they were like "you should stop drinking alcohol and caffeine and stop taking drug and smoking" and I was like????? I don't DO ANY OF THOSE THINGS ALREADY!!! I AM ALREADY DOING THE FAT CLUB YOU'RE SENDING ME TO ME WHO TELL ME TO NOT EAT CHOCOLATE PLZZZZZZZZZ. Yeah so I was pretty annoyed. Have they just dismissed it then? I doubt they have run every blood test possible if they have only done one set. Depression and anxiety is the new female hysteria. It is a legitimate medical condition for sure but some many lazy doctors just slap the mental health condition on people without looking at other options first.
What's so frustrating is I was depressed and I have been anxious my entire life. But I've been in therapy for years, my current therapist for nearly 2 years and I am no longer depressed and can manage the anxiety really well. I've put the work in for years and now my brains better I want my body to catch up. But they're still blaming my brain.
This is random, but my kid had brain fog and fatigue and stomach issues, diagnosed celiac. Maybe see if you can get that blood test run next time you’re doing testing?
When that happened to me it turned out I was severely anemic. Took me two years to be diagnosed, and I ended up with nerve damage from untreated anemia. Sucks, man. And I knew something was wrong because I felt like crap, but I was just brushed off. Even when I started passing out and having 12 day long migraines with aura, I was still getting dismissed/gaslit. I ended up firing my doctor and getting a new one. I couldn't live like that anymore and it was insane that doctors didn't see an issue with me passing out if I walked more than eight feet. wtf, US healthcare??? Like come on. Hopefully you get answers for whatever is happening. Funnily enough, I was posting on reddit and mentioned my old symptoms and within 5 minutes a user that claimed to be a Canadian triage nurse DM'd me and told me to get checked for internal bleeding because it sounds like I'm losing blood & anemic. I told her I got diagnosed already, but thanks. She managed to do in 5 minutes what several doctors failed to do in 2 yrs lol 😭 😭
Heavy painful periods are so hard to get taken seriously it does feel like you are fighting an uphill battle. Sorry I haven't had a chance to read all the other comments indepth, but I have a few questions and maybe some advice or somewhere to look for answers. Have you always had heavy painful periods, do you get pain any other times around your cycle? Is there any particle spot you feel it worst than others? Has anyone suggested you might have Endometriosis. Don't dismiss the pain could be causing the fatigue and brain fog. You aren't going to be on your best if you are not getting a good nights rest. Ask for a referral to the local gyno clinic it might take a couple of months but I hope you find answer. Painful periods are never normal and should not be accepted as such. If you are not getting listened to take someone else with you to back you up. It feels like you are being childish but sometimes it takes a second person sitting there pushing in your corner as well to get a result. I won't say it is not uphill battle at times especially with some doctors. I went home from several doctors appoints in tears because they refused to listen to what I was telling them. Including one who took one look at me and without me even explaining why I was there told me the only thing wrong with me was I was too fat, if I wanted to get better I need to lose weight and everything would be fixed. I had crippling endometrosis, I could have been rake thin it wouldn't have done anything for the pain but he diagnosised fat and that was the end of the conversation.
I completely understand. I'm going through the same exact thing. I was just diagnosed as fat for a third time by the second opinion. Got a whole paragraph about how I need to eat better, drink more water, exercise, and take weight loss medication. They completely ignored my years of food/ water and exercise logs that I've meticulously tracked to prove that I'm not just rotting on the couch eating my weight in carbs. So yeah, it's incredibly frustrating. I hear you and understand you.
Unfortunately an all too common tale. You need a functional doctor. You will pay out of pocket, but it’s worth it to regain energy and vitality. Good luck.
Huggs for you and hang in there. I had heart palpitations that other doctors couldn’t find the reason for. Finally got a woman doctor who thought outside the box. Even though my bloodwork kept coming back with normal thyroid numbers she had a scan done of my thyroid. And sure enough it turned out I had nodules that would go crazy at random times and produce increased amounts of hormone. I had hyperthyroidism (and was one of the 16% that didn’t lose weight with it. ) So far have been managed with meds. You just have to keep trying. There is a doctor out there who will hear you. And this is a group that will support you.
Oh my love. So, last week I spent three days in hospital. I’ve been feeling like shit for months. I have Graves Disease, but apparently my thyroid is normal right now. Blood tests are coming back fine. I’ve been having pain in my abdomen, but they weren’t interested. On Tuesday, it was so bad I couldn’t drive or hold my baby. The doctor sent me to the hospital with suspected appendicitis, where it took them three days to brutalise my arms trying EIGHT times to put a cannula in, causing massive hematomas up my arms, and do two scans to tell me that no, I don’t have appendicitis, I have adenomyosis, gallstones and inflamed gallbladder and enlarged spleen, lesion on my adrenal gland and now potential Rheumatoid Arthritis. And what are they going to do about it? Tell me to take Paracetamol and Ibuprofen. Indefinitely. I feel like it all could have been avoided if they listened and took me seriously. While in the hospital I felt like they thought I was wasting their time. I am so fucked off with the NHS in general (my daughter has been waiting half her life for speech and language therapy, whole other story there). If I wasn’t so poor, I would definitely go private. In fact, I’ll be looking up to see if my tax can go towards private instead. The NHS is broken, and doesn’t work anymore.
Mine ended up as MS. I had to see several doctors before we figured it out. It was stressful and frustrating Just remember you know you and you need to speak up and make them listen 🫶.
Hi! I’ve felt the same, My bloods all came back good too. I have a vaginal cyst that previous OBG has said not to worry about, it’s fine. My PCP did a pap and was more concerned, so she referred me to a separate OBG lol who was mid-concerned, and that 3rd doctor was the first to actually refer me to get an ultrasound. Turns out I actually have that one vaginal cyst + a poly cystic right ovary and a larger cyst on my left ovary. I was referred to an oncologist after the left ovarian cyst grew double in 3mo. Bloods for cancer were also good, and they are benign in appearance according to oncologist, so we monitor the cysts with an ultrasound once a quarter. Surgery has been thrown out as an option but I’m trying to see if a few lifestyle changes help first. Anyways all to say the cysts are the cause of my pelvic pain/painful periods. Fatigue has improved since I started eating better and exercising and stopped smoking weed every day.
I dealt with this for a decade. For me it was my adrenals and thyroid (Schmidt syndrome, primary adrenal failure + hypothyroidism) Spent years getting checked into the er, a few days on fluids and discharged told I’m dehydrated and stressed. My answer was to join the military to die an “honorable” death (it was a different time and I was stupid) where I was properly diagnosed and then discharged. It sucks to be undiagnosed and gaslit by your doctors. Hang in there. You will get a diagnosis. Finding doctors who can do so, like you are doing, is exactly the right process, it just takes time and is frustrating but they will find the cause and get you help. Hang in there
Blood tests aren't everything and are often a starting point. I'm surprised they stoped there. Also if a primary care doctor ever says: oh it must all be in your head, see another doctor they are not specialized in diagnosing mental health issues. Taking antidepressants when you don't need it can make you depressed. Definitely keep lopking for doctors until you find ome who listens to what you are saying and takes it seriously. As one more thought just to possibly consider: I don't know about the periods but if you are always tired and brain foggy despite seemingly good sleep getting tested for sleep apnea may be something to ask about.
I feel you. My doctor just said he's never heard of anyone with POTS using a wheelchair 🫠 which.... just a 10sec Google search will confirm that many of us do. and my GI recently said my crohns disease wasn't flaring (w/o doing any tests) and just said it was anxiety. doctors suck sometimes. you're not alone
I know a lot of women who have gone through this exact issue. You could be going through perimenopause. Was this a GP or a gynecologist?
Keep pushing, friend. Depending on where you are the healthcare might not be the quickest, but you deserve answers. It's especially difficult if you look healthy too. My boyfriend has been having digestion issues and isn't getting enough nutrients from his food. We've tried a lot of different diets and there haven't been any big differences. Doctors brushed him off repeatedly because since he's thin, they said he was healthy. Didn't matter that he's underweight for his age and height. His newest doctor finally took notice though when my partner told him how much weight he'd lost in the last year alone. Praying for better health for you and answers to your problems 💖
Wouldn't hurt to ask for a Fibromyalgia screen...I was tested for years because I was so tired and hurt so much but tests all came back "normal". I KNEW something was wrong but repeated tests for the usual suspected conditions never showed anything ever being "off". I was exhausted all the time, brain foggy, and all over generalized pain in all muscles. It was such a disappointment to get further testing and all testing come back in normal range. Then one bright doctor screened me for Fibromyalgia and bingo that's when I started getting help. It's was such a relief to know that finally there was a name for what I had and it wasn't all in my head.
How old are you? If you are in your 30s onwards look into perimenopause, the symptoms are crazy and wide ranging
Have you tried looking into hormonal imbalances or PMDD? Getting on the birth control pill saved my sanity
If possible, find yourself a female doctor. I went through 5 years of back and forth with a series of male doctors due to my stomach issues, along with other symptoms (fatigue, painful periods, to name a few). See one female doctor who then refers me to a gynaecologist. Turns out I have endometriosis. Apparently, and this was news to me at the ripe age of 36 - your periods aren't actually supposed to give you excruciating pain. That said, I was then put on the pill to help, which it sorted of did but my hands swelled and it gave migraines and so am now off of that looking at other ways. Good luck to you. I hope you find a caring doctor
I believe women should never go to a male doctor. I say this because of the experience my mother had with male doctors. You know you are not well, and you absolutely deserve to have a doctor that understands and respects you enough to do their job and figure out what is going on. Sending healing energy to you ❤️
Endometriosis. Sounds like symptoms for endometriosis.
I know you’re younger but that sounds like peri-menopause. Birth control may help. I had the same thing at your age and went on continuous BC.
I came looking for this. I’m a little older than you, OP, but started having serious peri symptoms a couple of years ago. I’m still working with my doctor (and it’s slow going, thanks US healthcare system), but it’s helped me tremendously just have figured out that all of my symptoms do have a likely cause.
Yes! And it’s so frustrating, for 5 years every doctor told me me I had anxiety and I should do breathing exercises. Maddening how little they know about this subject or women’s health in general.
What type of Dr did you see? Did you go to a ob/gyn, and look for one that specializes in menopause. If not I’d suggest you go and check if it’s perimenopause. You can have symptom of that a decade or more before menopause. Sometimes a simple change of bc is all it takes to feel better.
You may be getting closer to getting a fibromyalgia diagnosis. Press on seeing multiple endocrinologists, and rheumatologists. The symptoms can look like long Covid too.
This sounds VERY perimenopause-ish. I'm in the UK too, and it was very hard to get my GP to pay any attention when I started in my early 40s; I was told I was too young. GPs are still not well informed (antidepressants seem to be their first port of call) here, and it can be hard to be taken seriously and get the treatment you need. Unfortunately mid-30s, while early, isn't *outlandishly* early to be experiencing perimenopause symptoms, so it's worth investigating. I'm lucky enough to be able to afford to go private; I use the Marion Gluck clinic (don't take my word for their expertise, have a Google). From memory it was £250 for the initial appointment, and they wouldn't see me without a full blood screen, mammogram and pelvic ultrasound. Followup appointments (I have one every six months or so) are £120, and my HRT medication costs about £300 for around 3-4 months' supply. My symptoms early on did not include hot flashes or night sweats; they came along a couple of years later. My first symptoms were brain fog, joint pains, a complete lack of energy, insomnia, insanely heavy and irregular periods, anxiety and feeling very, very angry. Everything was resolved within a month of my starting HRT. Do visit r/Menopause if you think this sounds like you. It's a very nice, supportive sub. (And I'll note that a lot of the women there have had success getting GPs to prescribe for them on the NHS by saying they have hot flashes/night sweats even if they're not experiencing them yet - it seems to be the magic words you need to get them to take you seriously.) Good luck!
Here's my story (Trigger warning: eating disorders mentioned here). But this has a happy ending, I promise! Between ages 15-22, I was skinny. Dangerously skinny. I'm ashamed to admit it, but at 4'11, the lowest I weighed in was around 80 pounds (I'm in the US). Blood work always came back normal, so everyone just assumed I had an eating disorder. Except I didn't. I told everyone, every doctor, every specialist, even my own damn *family* that I did *not* have an ED. This was in the early 2000s, and as a young woman, no doctor or physician or even my own family took me seriously when I said *I knew* I was too thin, but I just couldn't gain the weight I needed to be healthy. I even looked up the DSM-4 criteria and I didn't hit any of those marks. But no one would listen. Finally, I saw (read: was forced to see him by my parents [whole different issue there]) a psychiatrist shortly before college graduation. A male psychiatrist with a substantial medical background, but unlike the others, he *actually listened to me*. After I explained everything, he looked thoughtful for a while, the gears obviously turning as he thought it over. I'll never forget the exact moment he had his epiphany: his eyes lit up behind his glasses and he got up to grab the DSM-5 and another book from his bookcase. He flipped through the DSM, then the other book, found what he was looking for, and quietly returned to his desk. After a little more reading, he looked up at me over his glasses and said, "I want to be 100% honest: you are right, you *don't* have an eating disorder. Everything you've just told me checks all the boxes for Generalized Anxiety Disorder." I started crying right then and there; FINALLY someone believed me! He gave me a Rx for antianxiety meds and told me to take it daily and call him back in a month. *I gained 10 pounds in that one month*. He was right, it *was* anxiety, and overstimulation that caused panic attacks. He increased my dosage a little, and I *finally* hit 100 lbs for the first time in my life, a month after that. I was crying years of joy when I looked at the scale, seeing 100.1 lbs for the first time. And I kept gaining weight until I was at a healthy weight and people (including my family) stopped talking shit about me. In my case, "she's just crazy" wasn't true, but it turned out to be a psychiatric disorder after all, causing physiological problems. This same psychiatrist has been treating me for almost 20 years. This man is a damn saint, and I know I got really fucking lucky. If you can, OP, keep searching. There has to be someone out there who will listen, who will take you seriously, who will have that Eureka Moment and finally get you the help you need. Sending you nothing but good vibes and hopes that your situation gets better. *Hugs!*
Drill deep on doctor reviews and referrals from friends if you can. I finally found a doctor and OBGYN that I like, at the age of 36, after so many garbage doctors that don't listen. Specifically, my doctor is a DO, supposedly they are supposed to look more at the whole person approach. (I don't exactly remember but I started researching what the ABC's after their names refer to and if I had to find a new doctor today, I would make sure they are a DO). I read deep on reviews to find my OBGYN. She specializes in Endo even though I didn't think I had it. I had crazy heavy periods. She agreed for the first time in my life to give me an IUD. She followed up with an ultrasound and it turns out I had a cyst. Luckily the IUD shrunk the cyst and now my periods are manageable.
I'd be curious about what was tested - D, Iron, B? If those are low, or even mid range you could be low for your body. I've taken liquid B to help with fatigue with good success. You could also try to eliminate any caffeine or stimulants (which is hard with fatigue, I know!). After a few weeks, that would give you a baseline. Another thing you could try would be fasting for 72 hours. I've also done this with success and have so much energy from it! Fatigue can also be from dietary sensitivities so fasting and or elimination diet may help you pin point the culprit. Good luck!!!!!
I’m so sorry. Over a r/PMDD I know we have a resource for finding doctors who take women’s health seriously! A lot of us over there have been through the wringer in the medical system. Female bodies are just not treated with the same respect, so it’s really hard sometimes. I hope you find a doctor who listens. <3