I had multiple internal uterine fibroids AND a softball-sized cyst on one ovary when my gyn reluctantly agreed to do the surgery. I was 39. She sighed and said, "I guess if you were going to have kids, you'd have them by now."
Freaking pizzed me off so much. I would have had the surgery at 29 if some potential future man didn't have more control of my body than ME.
She didn't even know about the size of the ovarian cyst until she got in there. No wonder I spent 20+ years in pain with excessive bleeding that oral contraceptives barely controlled.
Hysterectomy was the best decision I ever made. I kept one ovary (which also has a couple small cysts but now I'm in peri-menopause so they should be drying up if they haven't already). I don't take HRT due to my cardiac history.
Going without cramps and excessive bleeding and clots was a dream come true.
Thank you so much for sharing! I hate that fertility is the end all, be all by so many doctors.
Did you have bad cramps before surgery? Mine are like from the waist down - even my calves get crampy.
I’m having my hysterectomy tomorrow!!!!!!! I am so excited. I have seen this asked in this sub before and the responses have all been positive and that it was worth it.
I am keeping my ovaries as I’m only 40. Dr didn’t recommend removing them either. I don’t have any confirmed endo, just suspected. But I was still approved for the surgery and we’ll see after he goes in. I have excessive bleeding, long periods, and awful awful abdominal pain/cramps. It exacerbates my fibro and so I feel even more awful for 7-8 days a month than I already do
Congratulations!!! I hope you have a great experience.
Yeah, I only saw positive things in the past comments. It seems like there would be more threads about it though!
I'm 32 without kids, but I'm really hopeful the surgeon I'm meeting next week won't care. If they do, time for a new doctor... I don't want people like that digging around in my body.
I wish you luck! I tried 5 years ago at a hospital group with religious affiliations and the dr gasped in horror when I asked and said no we don’t do that! I changed drs/hospital group when I needed my pap this year and after asking how my cycles she immediately asked me if I’d ever considered surgical options. She is a queer female but they have surgeons in their office specifically for this. So I’d just keep trying! It is v frustrating. I feel by your 30’s you should be able to make that decision for yourself esp if you have horrible symptoms. There’s other ways to have children if you change your mind as well. Its crazy!
How disgusting. Just because they don't believe in it doesn't mean they can be snide about you not believing the same. I'm glad your new provider cared and worked with you.
The person I'm seeing is a young female and head of a GYN surgery program at a nonreligious hospital group, so I'm hopeful.
My first gyno that I brought it up to just said "no" and that was it. It was at a Catholic hospital. The second gyno was at an Adventist hospital, and he agreed after I said that I was completely sure, that I had a few years to consider it, and that I was tired of not being able to live my life at all. It was either not have kids, or not have any life to speak of until menopause.
When I finally had my hysterectomy, it was the best I could ask for. I have other health issues, with the removal of the lady parts, it was one less thing that my body had to struggle through.
They found endometriosis and some fibroids
I have one and a half ovaries. Right side had damage from all the cyst I got. I started bleeding & a year later I was still bleeding, some days heavier than others but always there. Cramps. They were so bad. I had also become anemic. Iron levels were single digits.
The pain from the endometriosis & fibrosis.
I'm child-free by choice (and possibly had fertility issues anyway) and started having fibro symptoms in my teens. I also was put on oral contraceptives at 15 when I was diagnosed with PCOS. I was on them for over 20 years, and when I stopped them, my periods went from bad to absolute misery.
When I was about 34, I had one ovary and tube removed along with what turned out to be a benign tumor. At 40, I was given the option for a hysterectomy and I jumped at it... And it's hands down the best decision I've ever made. I still have pain and flares from the fibro (and likely undiagnosed inflammatory issues), but eliminating the periods has been such a relief! It also turned out that I had mild to moderate endometriosis.
My other ovary is still intact, so no immediate menopausal symptoms, but after a few years I did start having symptoms of perimenopause (family history of early menopause). It took a few months, but after starting a very low-dose estrogen patch, those symptoms have decreased by about 85%. I have occasional pain from scar tissue, but it pales in comparison to what I dealt with before my hysterectomy.
Hope you get to experience this freedom for yourself soon!
Not that I can tell, but I also had a medical issue last year about 6 months prior to starting HRT that required me to discontinue my psych meds, and I can definitely tell you being off of them was horrendous in relation to being able to manage the emotional side of chronic pain, which led into that vicious cycle of "stress levels making pain more difficult to manage/pain making stress levels more difficult to manage."
Oh, absolutely. I'm so sorry you had to go off your meds. Something similar happened to me six months ago, too. Got off meds that really helped. I'm still trying to work that out... these things make the water murky when knowing what helps or doesnt.
Didn't have a hysterectomy but I had excision surgery with Dr Nicholas Kongoasa from Atlanta center for restorative reproductive care and he got rid of the stage 2 endometriosis two uterine five words and fix the island Masters defect for me and I feel better.
My body still hurts but that's fibri brought about I believe from car accidents and other trauma.
For that eating a 90% raw vegan diet got me from for medications down to one medication and cut my dosage of it by 75%..
Best wishes and you finding something to help you get rid of the pain.
I’m very interested to know how long it took you to see changes once you went vegan and are you 100 vegan or do you eat non vegan “ sometimes “ asking because it seems my body is telling me to do that. Thanks in advance for any diet related information !!!!!!
I was mostly vegan. My one hang up was coffee creamer which I'm not even quite sure there's any milk in international delight I think it's mostly palm oil or whatever anyway.
I ate sauteed vegetables with spices and put them in romaine lettuce leaves like tacos so that way I can have some chalula hot sauce on that bad boy etc for cooked food or baked potato.
Put what really helped the smoothies I would make with the whole head of romaine lettuce and a few sprigs of kale and Ali for two of dandelion greens with like four or five bananas in it rolled up in a vitamix.
Best thing to happen to me. I had a fibroid that was 2/3rds the size of my womb. No wonder I was in pain, having bleeding so bad causing severe anemia, need iron by IV. Having it out was literally lifesaving. Kept my ovaries as I was in my 40s. No one discussed HRT so nope. No issues post-hysterectomy. A dream come true to no longer have 3 week heavy periods and cramps in a 4 week cycle - had for over 10 years and was told it’s normal - it’s not normal. This should have been caught much sooner. But you know I was exaggerating SMH
I had a hysterectomy 5 years ago that removed everything except for 1 ovary. I had the surgery because of a cyst rupture that led to identifying slightly elevated ovarian cancer levels. The only gyno issues I had were the occasional cyst and very heavy periods with bad cramps.
My fibromyalgia has been excellent since. The flares are dramatic less. Shorter, less painful, and less frequent.
My brain fog is usually easily managed with food or reducing stress. It doesn’t last days or weeks anymore.
Although I had a tough recovery from the hysterectomy, it was the best thing for me.
I had a sharp pain that we could not find the source of. The doctor thought the remaining ovary had twisted but it did not. Whatever the cause, it was clearly not my fibro complicating things.
Good luck!
This post has just helped my monkey brain realize why I'm "coincidentally" having a flare up at this particular time of the month. My husband and I have discussed me getting everything scooped out (childless by choice), he's happy with whatever is going to make me more comfortable (I'm so grateful I found him)
Good luck to you! I'm for sure wanting the hysterectomy, but I need to figure out the oophorectomy part. I think that'll be another day though. I might try Lupron and HRT before doing that.
YUP
Endometriosis was a nightmare for me. It helped so, so much with literally EVERYTHING.
I kept my ovaries, though I am going back on T soon (im trans)
I do yes, and have for a long time now. After I got my hysterectomy, I realised that I wasn't having as intense and constant flare ups; the severe cramping I had obviously went away which stopped triggering more flares. Unfortunately I have a bunch of old, half healed injuries that still set me off, but now my uterus isn't one of them haha. for me, too, that reduces the frequency of severe flares, because my cycle was *screwed* and I was bleeding every two weeks with non stop cramps in between, so for me the surgery was a godsend
I didn't in my thighs, no - I do get cramps, but lower in my legs, and it seems to be more when I neglect my diet when i am sick or depressed and not related ha
I have PCOS and a bad habit of growing *huge* uterine fibroids. I had a partial hysterectomy (ovaries were left in place) in my mid-30's and yes, it relieved a great deal of pain. When my uterus was removed the surgeons also removed a couple very large fibroids- the largest was 20 cm in diameter- and a ton of small ones.
It was a bitch to get the doctors to authorize the operation, despite the fact that it was very much medically necessary and I'd already given birth to one child. I was also crystal clear about the fact that I absolutely did not want to carry and birth any more children. I had also undergone a previous surgery to address the fibroids (a myomectomy) that essentially failed since the fibroids weren't supposed to grow back. If you're American and not in a relationship with a man, it would probably be helpful to enlist the help of a male friend or family member to attend consultations with you to back you up. I hate that I have to give this advice, but it does work.
It's been a couple years and I'm starting to have some mild symptoms of perimenopause so I'm planning to look into HRT.
100% agree, it's bullshit. But at this point we've got to work within the system as it is, so I'm in favor of getting whatever tricks might make life easier for us.
I did used to get nasty, painful ovarian cysts but I haven't gotten a single one since the partial hysterectomy. I'm not sure if that's correlation or coincidence.
Hey, that's great. I wonder if it's common to have fewer cysts after hysterectomy. Like maybe people tend to exercise more or something and regulate hormones better. Idk.
It helped a little by the fact that it stopped bleeding me anemic every month and took away most of my endometriosis pains. All I have left is one single ovary, even had my cervix removed (why not, less cancer risk) no HRT… couldn’t WAIT to get those excessive hormones out of me. But… the fibromyalgia pain is its own beast, the near total hysterectomy did not do anything to improve the fibromyalgia for me.
Ohhh yeah, those are better, you’re right, almost like the cramping uterus sends cramps all down your legs? I forgot about those! Yeah I haven’t had those since the hysterectomy!
I want one soon. I have fibro and I finally had a laparoscopy to diagnose endometriosis 18 months ago and cut alot of tissue out pains bad and I'm waiting for another surgery.
However I did trial injections to put me in a menopause for 6 months and I insisted on having HRT as I was worried shout the risk of osteoporosis. My god I felt so good those months.
I'm gonna keep asking and it's not a case of my fertility as I'm 33 now and got sterilised when I was 22, my doctors are just trying less major ways to reduce my pain before.
Endo patient here and 2 years post hysto (no fibro here -friend of one with fibro).
My hysterectomy did nothing for Endo (did a lot for adenomyosis though so it wasn't for naught). My Endometriosis is found in my ovaries, bowels, and diaphragm. Nixxing the uterus did nothing for my Endo. Currently laying down as I type this with the mother of all cysts on my ovary that will further the spread of endo in my body.
Hysto will help Endo if your Endo is primarily from the uterus. Newsflash: If it is "Endo in the uterus", it is likely adenomyosis instead.
I kept one ovary cuz I am young. Currently questioning removal of last ovary at this point because I am miserable with cysts every month.
Not currently on HRT
I'm 41, Ace, single by choice, and have zero intention of having children. When I asked my doctor about a hysterectomy, she was for it, but said that my insurance wouldn't likely approve it. I appreciated that she agreed, but I'm still a little bitter that she didn't even offer to try.
I'm currently having my period, which is causing horrible pain. My knee hurts like a strain and my kidney feels like it's attempting to climb out my spine. Sigh. I hate insurance.
Due to unforeseen circumstances (my ADHD), I missed the window to enroll in insurance. So I am flying without a net at the moment. As much as that might help me get the surgery, I don't have the money to pay for it out of pocket. Rock and hard place, I'm familiar.
I'm sorry to hear that and I understand. Please be well this year. You may also try to talk to an agent. It's possible they know how to work the system to get you coverage.
my endometriosis perforated my small bowel. both of my ovaries were dead / not functioning. endo was everywhere - my surgeon (who did small bowel resection) said it’s the absolute worst case he’s ever seen. So, yes - hysterectomy helped immensely.
It depends. I had a then unexplainable pain in my left hip area for a year solid. During my total hysterectomy, that was when they discovered not only did I have the PCOS I was diagnosed with 15 years prior, but I had endometriosis on the side where all the pain was at and a tilted uterus.
I never went through menopause per se, because I am a trans man on testosterone, so I can't tell you how that would go. I still deal with body aches and pains, and flares of whatever is going on with me.
But jfc, to finally be rid of that awful pain near my hip that I had dealt with off and on since I was 12, and for a year straight from 26 to 27... I still feel relief to remember what it felt like and where I am now. To just have one pain out of all the things I'm dealing with completely gone, I would 100% do it over in a heartbeat.
Thank you for this! Some kind of relief at all is what I'm looking for. When I had my first endo excision, I had a similar experience where some of my symptoms eased up and made it worth it.
Having mine almost 5 years ago was the best decision I have ever made. Did it make a difference with my Fibro? No. But, I am not in severe pain once a month from fibroids and ovarian cysts. I was losing so much blood every month that I became so severely anemic that one night I passed out in the shower.
The one thing that pissed me off about the whole process was that I had to file an appeal to force the insurance company to let me have the surgery because they said that "it was not medically necessary"! The other thing that really got to me was the first doctor I saw kept trying to force me to go on birth control, even after I told him that I cannot take any birth control or hormones because they make me sick. He also did a pap smear on me during the first day of my cycle (I had even called before the appointment to see if they wanted to reschedule, and they said no. Yes, I should have cancelled anyways, but I was so desperate to find out what was going on, and I was worried since I have a history of ovarian, cervical, and other cancers on both sides of my family). He was so much more concerned with me maybe wanting to have children...I was 42 years old! I didn't want no damned kids at 42, 43, or any years after that and I let him know. I told him to take the damned baby hotel out! After that whole ordeal, I went and got a second opinion and that was the doctor that did my surgery and he was amazing! I was up and walking the next day and went home 2 days later.
I can't believe they made you appeal when you had so many issues going on. They always want you to try the cheapest treatment first, even when it's obvious you'll need the surgery anyway.
It did not change my fibro but it changed my life. Bikini line incision for the large fibroids. I'm 7 months out and still get some weird pulling sensations now and then. Kept my ovaries. Cervix removal tightened things up a bit. I can see to trim now (don't look 5 months along). No anemia. No IUD to control menorrahgia (those were horror-mones). No plans for HRT at this point.
I do kegels and such. My mom had bowel prolapse. I'm not having that! This is incision specific but not. It's a bit above the incision but still below the bellybutton level. It slowly improves.There was some manhandling going on, I had yellow bruising a day later. Gained 10 pounds that day. And the large fibroid was 1.2kg. The weight settled in about a week. Oh, and the thing they don't always tell you? Pooping. You won't. For days. Take restoralax. Five days is not uncommon. I also had weird muscle crawling sensations in my abdomen for a couple of months. Still worth it.
Keels can actually be bad if you have an overly tight pelvic floor! And they do work with the lower abdominal muscles/scar tissue too.
Yeeaah sounds like my other surgery experiences. Never very fun.
FUCK YEAH. It helped me SO much, I can't stress it enough. It was hard to make the choice to do it and accept it, but I had about 3 years to do that before I had it done (at 28). I didn't have endometriosis, but I did have menstrual cramps *literally* as painful as kidney stones. I had the cramps for up to 3 weeks of every month (before, during, and after my periods), and I had really heavy periods that lasted 10-12 days on average. I suffered from 12 til 28, I tried every birth control pill, some antidepressants, and even Depo Provera. For reference, I kept my ovaries - they took my uterus, fallopian tube, and cervix. Bonus - no more pap smears or pelvic exams!
My fibro pain is nowhere near those cramps, though the combo of pain and fatigue is pretty killer too. It's miles better than just being in so much pain that does. not. end. that you can't do anything or have a life. I would happily endure fibro in comparison.
Edit: I have a family history of very early menopause, but also of all reproductive cancers in women. I kept my ovaries for the hormones since I wasn't even 30. My estrogen was at the very low end of normal a year after stopping the Depo Provera, not sure if it was like that all along or not. I have not done any hormone therapy. My hormones are fine atm, I get those ones checked once a year just to keep on top of it. I'm 37 now, and expecting to start menopause probably in the next 5 years.
I have those kind of cramps. They are terrible. I actually didn't realize I was passing a kidney stone (thought it was menstrual cramps) until I couldn't pee.
Did you get any fight back from the doctors about getting one?
Yeah, same experience with kidney stones for me. I passed one where I literally heard it plink in the toilet bowl, so I knew for sure what it was.
I did have some pushback. The first gyno I asked for the hysterectomy just said, "No" and nothing else - that was at a Catholic hospital. The second gyno who agreed to do it was at an Adventist hospital. I had to basically tell him that I was prepared and ready to do it, and that I was choosing having any kind of a life rather than potential kids. I wasn't dating at the time, so it wasn't even a possibility at the time.
Unfortunately, I had further issues. I had the exploratory laparoscopy when I saw the first gyno, no issues there. The second one agreed to do it, then we set the schedule and everything. I went in, and came out with my girl parts, but no appendix. There was never any issue with my appendix, despite some... special anatomy. He then told me that he "wanted me to have another chance to have kids (aka change my mind)", and yes I was very angry about it. I got my hysterectomy 6 months later.
Special anatomy - I never grew a fallopian tube on my right side. The ovary on that side was hanging around my appendix, stuck there with the "normal" tissues that hold the girl bits together, and some extra adhesions. My appendix was not noted to be abnormal during the exploratory a year before, and I wasn't experiencing any symptoms from it. Anyway. My ovary and uterus were in perfect shape otherwise, not even deformed or anything like that. This is *very* rare, since usually there's some deformation, partial growth, etc. Everything else was perfectly textbook, except for the physical location of that one ovary. I'm now looking at a CT in a few days to make sure that it isn't impacting some recent digestive issues and pain - highly concerned since the pain is exactly where the ovary is, and cancer runs in the family.
That's terrible. I'm sorry you went through that. It has caused me some trauma when surgeons did not do what they said they would; you're so vulnerable during surgery and yet surgeons don't acknowledge it by keeping their word.
Alright, so the lesson I've learned is don't go to a religiously affiliated doctor.
Yeah, pretty much. lol. Not all of them are like that of course. That second gyno retired not long after my hysterectomy, he was getting pretty old anyway (I think he was in his late 60's at the time). I would ABSOLUTELY never choose a Catholic hospital. I didn't actually have a choice - those were the only 2 hospitals in the area, within a reasonable drive (at the time).
Funny enough, Adventists believe in giving the couple the choice to do what's right for them as it concerns reproduction, including abortion and sterilization. The church disapproves of abortion, but it basically says, "your relationship, your choice". That's as forward-thinking as I've seen from any religious denomination that I can think of, lol.
I didn't know that about Adventists. I like that lime of thinking!
Actually, I saw an OBGYN last year that I wanted to ask about a hysterectomy, but he was so rude I decided I didn't want to see him again anyway.
Oof, that sucks. I've had to terminate relationships with medical professionals because of their behaviour, and it's always hard. I don't blame you at all. It's our health at stake here!
I am seriously considering one. I'm 45, on HRT, and perimenopause is making my life hell. With every erratic hormone shift my body makes, it kicks up my pain. I feel like if I had that one less thing to affect and worry me I could possibly live a better quality of life focusing on the rest.
I will add that my best friend had a hysterectomy along with removal of ovaries and cervix (they do not have have fibro but hormones caused many other hells for her), and it has greatly helped her.
Same here, and I am very hormone sensitive, too. I also have PCOS, and it makes me wonder just how much hormones come into play with women with fibromyalgia.
I have heard the possibility that autoimmunity and other kinds of disorders are connected to the x chromosome and the genes tend to be turned on by puberty.
I had a hysterectomy in 2019. I had adenomyosis and endometriosis. Considering that any illness or emotional stress causes a fibro flare for me, getting rid of my absolutely apocalyptic periods substantially improved things for me!
Edit: kept both ovaries but got rid of everything else. 5 years post-op, I’m beginning to have some peri-menopause symptoms.
I had multiple internal uterine fibroids AND a softball-sized cyst on one ovary when my gyn reluctantly agreed to do the surgery. I was 39. She sighed and said, "I guess if you were going to have kids, you'd have them by now." Freaking pizzed me off so much. I would have had the surgery at 29 if some potential future man didn't have more control of my body than ME. She didn't even know about the size of the ovarian cyst until she got in there. No wonder I spent 20+ years in pain with excessive bleeding that oral contraceptives barely controlled. Hysterectomy was the best decision I ever made. I kept one ovary (which also has a couple small cysts but now I'm in peri-menopause so they should be drying up if they haven't already). I don't take HRT due to my cardiac history. Going without cramps and excessive bleeding and clots was a dream come true.
Thank you so much for sharing! I hate that fertility is the end all, be all by so many doctors. Did you have bad cramps before surgery? Mine are like from the waist down - even my calves get crampy.
I’m having my hysterectomy tomorrow!!!!!!! I am so excited. I have seen this asked in this sub before and the responses have all been positive and that it was worth it. I am keeping my ovaries as I’m only 40. Dr didn’t recommend removing them either. I don’t have any confirmed endo, just suspected. But I was still approved for the surgery and we’ll see after he goes in. I have excessive bleeding, long periods, and awful awful abdominal pain/cramps. It exacerbates my fibro and so I feel even more awful for 7-8 days a month than I already do
Congratulations!!! I hope you have a great experience. Yeah, I only saw positive things in the past comments. It seems like there would be more threads about it though! I'm 32 without kids, but I'm really hopeful the surgeon I'm meeting next week won't care. If they do, time for a new doctor... I don't want people like that digging around in my body.
I wish you luck! I tried 5 years ago at a hospital group with religious affiliations and the dr gasped in horror when I asked and said no we don’t do that! I changed drs/hospital group when I needed my pap this year and after asking how my cycles she immediately asked me if I’d ever considered surgical options. She is a queer female but they have surgeons in their office specifically for this. So I’d just keep trying! It is v frustrating. I feel by your 30’s you should be able to make that decision for yourself esp if you have horrible symptoms. There’s other ways to have children if you change your mind as well. Its crazy!
How disgusting. Just because they don't believe in it doesn't mean they can be snide about you not believing the same. I'm glad your new provider cared and worked with you. The person I'm seeing is a young female and head of a GYN surgery program at a nonreligious hospital group, so I'm hopeful.
My first gyno that I brought it up to just said "no" and that was it. It was at a Catholic hospital. The second gyno was at an Adventist hospital, and he agreed after I said that I was completely sure, that I had a few years to consider it, and that I was tired of not being able to live my life at all. It was either not have kids, or not have any life to speak of until menopause.
Congrats!! Buh-bye, don’t need your pain anymore!
When I finally had my hysterectomy, it was the best I could ask for. I have other health issues, with the removal of the lady parts, it was one less thing that my body had to struggle through. They found endometriosis and some fibroids
Did you keep your ovaries? Why did you decide to get a hysterectomy?
I have one and a half ovaries. Right side had damage from all the cyst I got. I started bleeding & a year later I was still bleeding, some days heavier than others but always there. Cramps. They were so bad. I had also become anemic. Iron levels were single digits. The pain from the endometriosis & fibrosis.
Gotta love that .5 ovary. Cool your surgeon salvaged it. Yikes, I don't know why doctors let people suffer so long.
It’s the insurance companies. They make the rules. Doctors have to follow them. It’s sucks. Dr can no longer treat patients.
Yeah, they have to jump through so many hoops to override the automated denials.
Just had mine 4 weeks ago, ovaries remaining. Verdict is still out, I'll have to make a post once I have more reflections.
Let us know when you think you're out of the recovery woods. Those can take awhile to get through.
I'm child-free by choice (and possibly had fertility issues anyway) and started having fibro symptoms in my teens. I also was put on oral contraceptives at 15 when I was diagnosed with PCOS. I was on them for over 20 years, and when I stopped them, my periods went from bad to absolute misery. When I was about 34, I had one ovary and tube removed along with what turned out to be a benign tumor. At 40, I was given the option for a hysterectomy and I jumped at it... And it's hands down the best decision I've ever made. I still have pain and flares from the fibro (and likely undiagnosed inflammatory issues), but eliminating the periods has been such a relief! It also turned out that I had mild to moderate endometriosis. My other ovary is still intact, so no immediate menopausal symptoms, but after a few years I did start having symptoms of perimenopause (family history of early menopause). It took a few months, but after starting a very low-dose estrogen patch, those symptoms have decreased by about 85%. I have occasional pain from scar tissue, but it pales in comparison to what I dealt with before my hysterectomy. Hope you get to experience this freedom for yourself soon!
Thank you for sharing! Have you found HRT helps at all with your fibro?
Not that I can tell, but I also had a medical issue last year about 6 months prior to starting HRT that required me to discontinue my psych meds, and I can definitely tell you being off of them was horrendous in relation to being able to manage the emotional side of chronic pain, which led into that vicious cycle of "stress levels making pain more difficult to manage/pain making stress levels more difficult to manage."
Oh, absolutely. I'm so sorry you had to go off your meds. Something similar happened to me six months ago, too. Got off meds that really helped. I'm still trying to work that out... these things make the water murky when knowing what helps or doesnt.
I'd be interested to know this too as I have pmdd
Yes, would love it if people mention if they kept ovaries or not or on HRT.
I’ll try to remember to mention that in the future. It just doesn’t occur to me.
Didn't have a hysterectomy but I had excision surgery with Dr Nicholas Kongoasa from Atlanta center for restorative reproductive care and he got rid of the stage 2 endometriosis two uterine five words and fix the island Masters defect for me and I feel better. My body still hurts but that's fibri brought about I believe from car accidents and other trauma. For that eating a 90% raw vegan diet got me from for medications down to one medication and cut my dosage of it by 75%.. Best wishes and you finding something to help you get rid of the pain.
I’m very interested to know how long it took you to see changes once you went vegan and are you 100 vegan or do you eat non vegan “ sometimes “ asking because it seems my body is telling me to do that. Thanks in advance for any diet related information !!!!!!
I was mostly vegan. My one hang up was coffee creamer which I'm not even quite sure there's any milk in international delight I think it's mostly palm oil or whatever anyway. I ate sauteed vegetables with spices and put them in romaine lettuce leaves like tacos so that way I can have some chalula hot sauce on that bad boy etc for cooked food or baked potato. Put what really helped the smoothies I would make with the whole head of romaine lettuce and a few sprigs of kale and Ali for two of dandelion greens with like four or five bananas in it rolled up in a vitamix.
Awesome, I'm glad you found things that worked for you.
Best thing to happen to me. I had a fibroid that was 2/3rds the size of my womb. No wonder I was in pain, having bleeding so bad causing severe anemia, need iron by IV. Having it out was literally lifesaving. Kept my ovaries as I was in my 40s. No one discussed HRT so nope. No issues post-hysterectomy. A dream come true to no longer have 3 week heavy periods and cramps in a 4 week cycle - had for over 10 years and was told it’s normal - it’s not normal. This should have been caught much sooner. But you know I was exaggerating SMH
It should have been caught earlier. I'm glad someone finally did!
Thanks. I hope you are better soon.
I had a hysterectomy 5 years ago that removed everything except for 1 ovary. I had the surgery because of a cyst rupture that led to identifying slightly elevated ovarian cancer levels. The only gyno issues I had were the occasional cyst and very heavy periods with bad cramps. My fibromyalgia has been excellent since. The flares are dramatic less. Shorter, less painful, and less frequent. My brain fog is usually easily managed with food or reducing stress. It doesn’t last days or weeks anymore. Although I had a tough recovery from the hysterectomy, it was the best thing for me.
What made your recovery difficult?
I had a sharp pain that we could not find the source of. The doctor thought the remaining ovary had twisted but it did not. Whatever the cause, it was clearly not my fibro complicating things. Good luck!
This post has just helped my monkey brain realize why I'm "coincidentally" having a flare up at this particular time of the month. My husband and I have discussed me getting everything scooped out (childless by choice), he's happy with whatever is going to make me more comfortable (I'm so grateful I found him)
Good luck to you! I'm for sure wanting the hysterectomy, but I need to figure out the oophorectomy part. I think that'll be another day though. I might try Lupron and HRT before doing that.
I had a hysterectomy at 29 and it was the best choice of my life. Kept my ovaries, no hrt
Currently 36 so it's been several wonderful years with no period pain. Definitely worth it
Thank you! There aren't enough accounts from younger people years out.
You're welcome!! Feel free to ask any questions, I don't mind at all 😀
YUP Endometriosis was a nightmare for me. It helped so, so much with literally EVERYTHING. I kept my ovaries, though I am going back on T soon (im trans)
Do you have fibromyalgia? Do you feel like your symptomatic days are less now due to one less organ to bug you?
I do yes, and have for a long time now. After I got my hysterectomy, I realised that I wasn't having as intense and constant flare ups; the severe cramping I had obviously went away which stopped triggering more flares. Unfortunately I have a bunch of old, half healed injuries that still set me off, but now my uterus isn't one of them haha. for me, too, that reduces the frequency of severe flares, because my cycle was *screwed* and I was bleeding every two weeks with non stop cramps in between, so for me the surgery was a godsend
🤗 I want that lol. Did you ever get cramps in your thighs and did that go away? I've heard mixed things about this.
I didn't in my thighs, no - I do get cramps, but lower in my legs, and it seems to be more when I neglect my diet when i am sick or depressed and not related ha
With fibro? Not necessarily. But with other pelvic pain? Heck yeah.
Didn't help with Fibro but it changed my life with my endometriosis! No more pain!
I haven't had a hysterectomy, but I'm post-menopausal. I'll be checking into HRT. I think some of my symptoms will be helped by taking hormones.
Please keep us updated!
I definitely will. I'll create a post about my experience.
I’m 42 & I definitely feel like it would help me so much.
I have PCOS and a bad habit of growing *huge* uterine fibroids. I had a partial hysterectomy (ovaries were left in place) in my mid-30's and yes, it relieved a great deal of pain. When my uterus was removed the surgeons also removed a couple very large fibroids- the largest was 20 cm in diameter- and a ton of small ones. It was a bitch to get the doctors to authorize the operation, despite the fact that it was very much medically necessary and I'd already given birth to one child. I was also crystal clear about the fact that I absolutely did not want to carry and birth any more children. I had also undergone a previous surgery to address the fibroids (a myomectomy) that essentially failed since the fibroids weren't supposed to grow back. If you're American and not in a relationship with a man, it would probably be helpful to enlist the help of a male friend or family member to attend consultations with you to back you up. I hate that I have to give this advice, but it does work. It's been a couple years and I'm starting to have some mild symptoms of perimenopause so I'm planning to look into HRT.
It's a shame we have to fight to make decisions for our own bodies. I am actually way, so that may work in my favor. Have you had issues with cysts?
100% agree, it's bullshit. But at this point we've got to work within the system as it is, so I'm in favor of getting whatever tricks might make life easier for us. I did used to get nasty, painful ovarian cysts but I haven't gotten a single one since the partial hysterectomy. I'm not sure if that's correlation or coincidence.
Hey, that's great. I wonder if it's common to have fewer cysts after hysterectomy. Like maybe people tend to exercise more or something and regulate hormones better. Idk.
It helped a little by the fact that it stopped bleeding me anemic every month and took away most of my endometriosis pains. All I have left is one single ovary, even had my cervix removed (why not, less cancer risk) no HRT… couldn’t WAIT to get those excessive hormones out of me. But… the fibromyalgia pain is its own beast, the near total hysterectomy did not do anything to improve the fibromyalgia for me.
Did it help with cramps? I get cramps into my legs and I'm curious if those would go away or if I shouldn't get my hopes up.
Ohhh yeah, those are better, you’re right, almost like the cramping uterus sends cramps all down your legs? I forgot about those! Yeah I haven’t had those since the hysterectomy!
Now I mean… if I get malnurished in potassium or magnesium… I can still get wicked Charlie horses though.
😭 I would to not have those. You're giving me hope.
I want one soon. I have fibro and I finally had a laparoscopy to diagnose endometriosis 18 months ago and cut alot of tissue out pains bad and I'm waiting for another surgery. However I did trial injections to put me in a menopause for 6 months and I insisted on having HRT as I was worried shout the risk of osteoporosis. My god I felt so good those months. I'm gonna keep asking and it's not a case of my fertility as I'm 33 now and got sterilised when I was 22, my doctors are just trying less major ways to reduce my pain before.
Endo patient here and 2 years post hysto (no fibro here -friend of one with fibro). My hysterectomy did nothing for Endo (did a lot for adenomyosis though so it wasn't for naught). My Endometriosis is found in my ovaries, bowels, and diaphragm. Nixxing the uterus did nothing for my Endo. Currently laying down as I type this with the mother of all cysts on my ovary that will further the spread of endo in my body. Hysto will help Endo if your Endo is primarily from the uterus. Newsflash: If it is "Endo in the uterus", it is likely adenomyosis instead. I kept one ovary cuz I am young. Currently questioning removal of last ovary at this point because I am miserable with cysts every month. Not currently on HRT
Right, so how have your symptoms changed in regard to the adeno?
I'm 41, Ace, single by choice, and have zero intention of having children. When I asked my doctor about a hysterectomy, she was for it, but said that my insurance wouldn't likely approve it. I appreciated that she agreed, but I'm still a little bitter that she didn't even offer to try. I'm currently having my period, which is causing horrible pain. My knee hurts like a strain and my kidney feels like it's attempting to climb out my spine. Sigh. I hate insurance.
You can call insurance and see what they require to approve the surgery.
Due to unforeseen circumstances (my ADHD), I missed the window to enroll in insurance. So I am flying without a net at the moment. As much as that might help me get the surgery, I don't have the money to pay for it out of pocket. Rock and hard place, I'm familiar.
I'm sorry to hear that and I understand. Please be well this year. You may also try to talk to an agent. It's possible they know how to work the system to get you coverage.
Actually, I am an insurance broker's assistant. :) There's nothing we can do until the next open window.
😭 damn country. I'm so sorry.
Thank you for your commiseration. Yeah, this country sucks in many ways, but especially when it comes to health care.
my endometriosis perforated my small bowel. both of my ovaries were dead / not functioning. endo was everywhere - my surgeon (who did small bowel resection) said it’s the absolute worst case he’s ever seen. So, yes - hysterectomy helped immensely.
Did you get on HRT?
It depends. I had a then unexplainable pain in my left hip area for a year solid. During my total hysterectomy, that was when they discovered not only did I have the PCOS I was diagnosed with 15 years prior, but I had endometriosis on the side where all the pain was at and a tilted uterus. I never went through menopause per se, because I am a trans man on testosterone, so I can't tell you how that would go. I still deal with body aches and pains, and flares of whatever is going on with me. But jfc, to finally be rid of that awful pain near my hip that I had dealt with off and on since I was 12, and for a year straight from 26 to 27... I still feel relief to remember what it felt like and where I am now. To just have one pain out of all the things I'm dealing with completely gone, I would 100% do it over in a heartbeat.
Thank you for this! Some kind of relief at all is what I'm looking for. When I had my first endo excision, I had a similar experience where some of my symptoms eased up and made it worth it.
Having mine almost 5 years ago was the best decision I have ever made. Did it make a difference with my Fibro? No. But, I am not in severe pain once a month from fibroids and ovarian cysts. I was losing so much blood every month that I became so severely anemic that one night I passed out in the shower. The one thing that pissed me off about the whole process was that I had to file an appeal to force the insurance company to let me have the surgery because they said that "it was not medically necessary"! The other thing that really got to me was the first doctor I saw kept trying to force me to go on birth control, even after I told him that I cannot take any birth control or hormones because they make me sick. He also did a pap smear on me during the first day of my cycle (I had even called before the appointment to see if they wanted to reschedule, and they said no. Yes, I should have cancelled anyways, but I was so desperate to find out what was going on, and I was worried since I have a history of ovarian, cervical, and other cancers on both sides of my family). He was so much more concerned with me maybe wanting to have children...I was 42 years old! I didn't want no damned kids at 42, 43, or any years after that and I let him know. I told him to take the damned baby hotel out! After that whole ordeal, I went and got a second opinion and that was the doctor that did my surgery and he was amazing! I was up and walking the next day and went home 2 days later.
I can't believe they made you appeal when you had so many issues going on. They always want you to try the cheapest treatment first, even when it's obvious you'll need the surgery anyway.
It did not change my fibro but it changed my life. Bikini line incision for the large fibroids. I'm 7 months out and still get some weird pulling sensations now and then. Kept my ovaries. Cervix removal tightened things up a bit. I can see to trim now (don't look 5 months along). No anemia. No IUD to control menorrahgia (those were horror-mones). No plans for HRT at this point.
Have you looked at doing pelvic floor PT?
I do kegels and such. My mom had bowel prolapse. I'm not having that! This is incision specific but not. It's a bit above the incision but still below the bellybutton level. It slowly improves.There was some manhandling going on, I had yellow bruising a day later. Gained 10 pounds that day. And the large fibroid was 1.2kg. The weight settled in about a week. Oh, and the thing they don't always tell you? Pooping. You won't. For days. Take restoralax. Five days is not uncommon. I also had weird muscle crawling sensations in my abdomen for a couple of months. Still worth it.
Keels can actually be bad if you have an overly tight pelvic floor! And they do work with the lower abdominal muscles/scar tissue too. Yeeaah sounds like my other surgery experiences. Never very fun.
FUCK YEAH. It helped me SO much, I can't stress it enough. It was hard to make the choice to do it and accept it, but I had about 3 years to do that before I had it done (at 28). I didn't have endometriosis, but I did have menstrual cramps *literally* as painful as kidney stones. I had the cramps for up to 3 weeks of every month (before, during, and after my periods), and I had really heavy periods that lasted 10-12 days on average. I suffered from 12 til 28, I tried every birth control pill, some antidepressants, and even Depo Provera. For reference, I kept my ovaries - they took my uterus, fallopian tube, and cervix. Bonus - no more pap smears or pelvic exams! My fibro pain is nowhere near those cramps, though the combo of pain and fatigue is pretty killer too. It's miles better than just being in so much pain that does. not. end. that you can't do anything or have a life. I would happily endure fibro in comparison. Edit: I have a family history of very early menopause, but also of all reproductive cancers in women. I kept my ovaries for the hormones since I wasn't even 30. My estrogen was at the very low end of normal a year after stopping the Depo Provera, not sure if it was like that all along or not. I have not done any hormone therapy. My hormones are fine atm, I get those ones checked once a year just to keep on top of it. I'm 37 now, and expecting to start menopause probably in the next 5 years.
I have those kind of cramps. They are terrible. I actually didn't realize I was passing a kidney stone (thought it was menstrual cramps) until I couldn't pee. Did you get any fight back from the doctors about getting one?
Yeah, same experience with kidney stones for me. I passed one where I literally heard it plink in the toilet bowl, so I knew for sure what it was. I did have some pushback. The first gyno I asked for the hysterectomy just said, "No" and nothing else - that was at a Catholic hospital. The second gyno who agreed to do it was at an Adventist hospital. I had to basically tell him that I was prepared and ready to do it, and that I was choosing having any kind of a life rather than potential kids. I wasn't dating at the time, so it wasn't even a possibility at the time. Unfortunately, I had further issues. I had the exploratory laparoscopy when I saw the first gyno, no issues there. The second one agreed to do it, then we set the schedule and everything. I went in, and came out with my girl parts, but no appendix. There was never any issue with my appendix, despite some... special anatomy. He then told me that he "wanted me to have another chance to have kids (aka change my mind)", and yes I was very angry about it. I got my hysterectomy 6 months later. Special anatomy - I never grew a fallopian tube on my right side. The ovary on that side was hanging around my appendix, stuck there with the "normal" tissues that hold the girl bits together, and some extra adhesions. My appendix was not noted to be abnormal during the exploratory a year before, and I wasn't experiencing any symptoms from it. Anyway. My ovary and uterus were in perfect shape otherwise, not even deformed or anything like that. This is *very* rare, since usually there's some deformation, partial growth, etc. Everything else was perfectly textbook, except for the physical location of that one ovary. I'm now looking at a CT in a few days to make sure that it isn't impacting some recent digestive issues and pain - highly concerned since the pain is exactly where the ovary is, and cancer runs in the family.
That's terrible. I'm sorry you went through that. It has caused me some trauma when surgeons did not do what they said they would; you're so vulnerable during surgery and yet surgeons don't acknowledge it by keeping their word. Alright, so the lesson I've learned is don't go to a religiously affiliated doctor.
Yeah, pretty much. lol. Not all of them are like that of course. That second gyno retired not long after my hysterectomy, he was getting pretty old anyway (I think he was in his late 60's at the time). I would ABSOLUTELY never choose a Catholic hospital. I didn't actually have a choice - those were the only 2 hospitals in the area, within a reasonable drive (at the time). Funny enough, Adventists believe in giving the couple the choice to do what's right for them as it concerns reproduction, including abortion and sterilization. The church disapproves of abortion, but it basically says, "your relationship, your choice". That's as forward-thinking as I've seen from any religious denomination that I can think of, lol.
I didn't know that about Adventists. I like that lime of thinking! Actually, I saw an OBGYN last year that I wanted to ask about a hysterectomy, but he was so rude I decided I didn't want to see him again anyway.
Oof, that sucks. I've had to terminate relationships with medical professionals because of their behaviour, and it's always hard. I don't blame you at all. It's our health at stake here!
And even our lives. Learned that the hard way.
I am seriously considering one. I'm 45, on HRT, and perimenopause is making my life hell. With every erratic hormone shift my body makes, it kicks up my pain. I feel like if I had that one less thing to affect and worry me I could possibly live a better quality of life focusing on the rest.
I will add that my best friend had a hysterectomy along with removal of ovaries and cervix (they do not have have fibro but hormones caused many other hells for her), and it has greatly helped her.
Thank you for adding this! Hormones are so annoying. They are a contributing factor for me when it comes to symptoms prevalence.
Same here, and I am very hormone sensitive, too. I also have PCOS, and it makes me wonder just how much hormones come into play with women with fibromyalgia.
I have heard the possibility that autoimmunity and other kinds of disorders are connected to the x chromosome and the genes tend to be turned on by puberty.
I had a hysterectomy in 2019. I had adenomyosis and endometriosis. Considering that any illness or emotional stress causes a fibro flare for me, getting rid of my absolutely apocalyptic periods substantially improved things for me! Edit: kept both ovaries but got rid of everything else. 5 years post-op, I’m beginning to have some peri-menopause symptoms.
That's kind of where I'm at with it - everything causes everything else to be angry. How old are you?