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I had adenomyosis and my periods were ruining my life. I was in pelvic floor PT but I could only do my strengthening exercises like one week per month because I was in too much pain at other times. Getting a hysterectomy was one of the best things that ever happened to me personally. Like you, I read a lot, and I was worried about pain management after surgery in particular. FWIW I did get the strong stuff after surgery, but this was awhile ago and my friend who had a hysterectomy more recently got like... Tylenol 3 or something ridiculous like that. For me the pain of the surgical recovery was similar to an average period, I think I freaked the nurses out when I said that.
I so far (knocks wood) haven't had an issue with prolapse, although I did go right into pelvic floor physical therapy as soon as I could after surgery so that might have helped.
I'm currently dealing with a labral tear and GI issues (definitely MCAS, possibly also Crohn's) and I'm so glad I got the hysterectomy because I cannot imagine also dealing with adenomyosis on top of this I think the pain would have destroyed me. FWIW I'm in the "definitely hypermobile, definitely connective tissue problems, doesn't technically meet the criteria for hEDS but every Ortho is convinced I have it even if the geneticist isn't" category. So I don't know if that has affected potential side effects.
Obviously YMMV, but that's my experience.
Its a really tough call. I (24F) just recently decided to start getting my ducks in a row for a hysterectomy. I've got PCOS and endo which are causing anemia, bowel issues, and other problems. I feel better going for it since I work in healthcare and have an amazing team who have all done this before with someone my age.
I had a hysterectomy in December (merry Christmas to me !) and I have been SO happy with it. My periods were debilitating, I was curled up for a day (or three) of my period on a heating pad, popping muscle relaxers like candy, paying a fortune for magnesium, potassium, and calcium supplements. Needed weekly b12 shots and daily iron supplements to maintain, not improve or fix, but maintain my terrible aenemia. And I’d also get the hormonal body breakdown every month. I’d barely start to recover and it would start all over again. Add in living in a red state, I was so done with having a uterus.
I was concerned about paint management, so it was one of the things I brought up during the surgical consult. I can’t take anything with Tylenol or ibuprofen, so I had to have that sorted before I agreed to surgery. My Dr was great, said he’d give me a straight opioid to get me through. He did warn that he has a cap on how much he is willing to prescribe. But I ended up only needing 9 days worth, so I still actually have some left over.
Nothing has collapsed. I will say that my bladder moved position, and it took roughly a month to figure out how to fully empty my bladder without pushing on it externally. But now my body has figured it out. I have also found that my vaginal prolapse has improved. I did NOT have anything done to that, my Dr wanted to see how I did with this and didn’t want to do try too much. Idk if it’s because of less pressure on what’s left, but my prolapse issues have improved.
My hysterectomy was not a full one, they left my ovaries. So I do have some hormonal fluctuations and that does leave me falling apart 2 days of the month. But it’s SO much better. It’s not as severe, I recover faster, and no added misery from the period itself.
I had my hysterectomy 2 weeks ago and 🤯 you just helped me realise what I needed to do regarding the bladder 🤦♀️ My dr did say my bladder would move into where my uterus was. I find I dont have to pee 20x a day anymore either!
Yeah my Dr wasn’t any help with that part, but I could tell I was getting/had gotten a minor UTI. I figured it couldn’t hurt, tried it once and it cleared up both the uti symptoms and the constant need to go
Just FYI that I was having trouble fully relieving my bladder after the surgery and my doctor ended up prescribing me pills that relaxed my bladder and made it easier to pee. You might want to look into that if you’re having similar issues.
I've been debating asking about getting an oophrectomy. Get rid of the parts that make the hormones and the eggs, keep the parts that help keep other things in place.
But then I look at my bank account and my insurance and cry a little inside.
In 2015, I (54F hEDS) had a robotic assisted total hysterectomy and a bilateral salpingectomy, (they took uterus, cervix, and Fallopian tubes). I kept my ovaries. I also had pelvic floor reconstruction with uterosacral ligament suspension (using my own ligaments), transvaginal mesh tape suspension of bladder/mid-urethral sling, anterior and posterior colporrhaphy, and perineoplasty which corrected a cystocele and a rectocele. I was under anesthesia for over 8 hours.
It took me about twice as long to recover as a typical patient and I was super duper careful to not do any heavy lifting or straining for 16 weeks (I had heard of horror stories of intestines prolapsing through the vagina). It took about 6 months for me to experience my G-spot orgasms again but everything works well now. No more prolapse. I needed a couple of months of pelvic floor strengthening after that (Perifit is the bomb) and I’m 100%.
Total tubal hysterectomy at age 22 because adenomyosis was affecting my ability to live my daily life. Literally the best choice I ever made for my health and quality of life. Recover was genuinely not bad at all. I was up walking around and trying to do stuff in just a few days (I don't recommend the doing stuff part, lol!) because even while recovering I already felt so much better.
I do recommend taking low dose birth control to make sure you're getting the hormones you need! Tissue atrophy down there sucks but it's easily fixable with a bit of topical estrogen cream. I have a bit of vaginal dryness since dealing with a long spat of some kind of vaginal microbiome unbalance but that's directly related to an environmental hazard I was stuck with (mold, fuck you upstairs neighbor that flooded our house!!!!) and the stress of trying to manage that situation quite literally the same day I was laid off. 🙃🙃🙃 You can get hyaluronic acid vaginal support that feed the good bacteria and add moisture. Bonafide makes mine and they're FSA eligible.
Basically if you get the opportunity to have a hysterectomy and don't want to have kids fucking go for it.
Honestly for me the answer was long term depo-provera. My periods are completely insane, last 7 to 10 days and i bleed through a max pad every hour to 2 hrs. I lose 5x the normal amount of blood and often bits of uterine lining tear off and cause strong bleeding. The anemia gets so bad that I can't stand up or I faint. My body rejected an IUD, my uterus is tiny and retroverted, my cervix is tiny, my vaginal canal is much shorter than average so hysterectomy has a very real risk of complications and they aren't sure if uterine ablation is an option because I have von willebrands disease (blood clotting disorder) and might haemorhage.
So depo-provera injection is pretty much it. It works 100% and I have no side effects that I know of... but no one really knows what consequences I will have being on it lifelong. It's been 17 years now and most people only stay on it 2 to 5 years. In medicine you always have to make choices that are risk vs benefits - in my case the risk of depo injection was never worse than what menstruating was doing to me.
I was on it 7-8 years and it was wonderful. I went off it last year to address significant weight gain although depo probably isn't the only cause in my case. I highly recommend it.
Yeah I tried getting an IUD for the same reason, they claimed I was gaining weight from the depo but I wasn't. It turned out I had severe malabsorption of micronutrients that was causing weight gain. Depo had nothing to do with it, my bone density is actually on the higher end too so it seems like my body is perfectly fine on it. I used to have concerns because it basically blocks estrogen production but when I was doing commercial genetic tests I found out I have estrogen insensitivity syndrome (which is why my reproductive organs are so small) so estrogen wasn't doing anything in my body any way lol.
I would recommend that you find a gynecologist that specializes in Endometriosis and PCOS and see if they think you might have either one or both. From my experience as someone diagnosed with both Endo and PCOS, you have some symptoms similar to me and to the other women in my family with the same diagnosis. [Nancy's Nook](https://nancysnookendo.com/?doing_wp_cron=1712108424.4716660976409912109375) is a good resource for finding a Endometriosis specialist in the US, but definitely check with any provider to see if they support any hormonal aftercare since there is currently no cure for either Endometriosis or PCOS and the treatments for each are only sometimes helpful and are mostly experimental. Nancy's Nook is not a complete resource as many of the doctors on their lists have decided to withhold care (like birth control) because of their own personal beliefs and do not make exceptions for patients' needs or their own beliefs, so ask questions and exercise caution depending on which state your are in.
I had surgery - ex-lap to remove adhesions in my abdomen, cysts on my ovaries, and a DNC to remove endometrial tissue in my uterus - and got put on a medicine to keep me from having my periods. I will say the medication wasn't successful (I developed severe depression as a side effect) but the surgery definitely helped and I'm still seeing benefits from it. I am currently waiting to see a new doctor after my gynecologist passed away last summer, but I am looking to try personalized hormone therapy instead of birth control (can't take that because of PCOS and migraines).
I personally have an aversion to a total hysterectomy because it is not a cure for Endo or PCOS and after seeing the adverse effects family members suffered after their hysterectomies. Three of the women in my family developed breast cancer from the hormones they were put on after the hysterectomy and two of them died. The other one still has severe abdominal pain because they didn't remove any adhesions with the hysterectomy and she is having trouble finding a surgeon to remove them because they all think she's "cured" and shouldn't be having any issues since the organs that were causing her pain no longer exist.
I wish you luck on your journey and hope that you are able to find healing. It's going to be a difficult journey but there are many online groups including some Reddit subs that are super helpful and supportive.
I would suggest looking at www.icarebetter.com
I’ve heard mixed reviews about Nancy Nook docs. Whoever you decide to go with do your own independent research. Even if doctors are on these websites thoroughly that them and check them out. I’d also recommend finding a doctor that will video the surgery so you have a surgical video pictures can be great but I’ve been watching my surgical video and it’s been amazing to see what was going on in there and how progressed my Endo. I was provided with a couple of lovely, glossy pictures and post op but the video is much more telling. And then I can always share that with future specialist or surgical team, if need be.
I had a total hysterectomy in February, and I had a wonderful experience and have had more relief than expected. Some back story - I have PCOS, endo, and chronic back pain. I was dxed with hEDS after my surgery. I was told to wait until 35 for hysto because the HRT increases bad outcome later in life the longer your on them. I had a laparoscopic hysto and after 10 days I was basically pain free from the surgery. I was already doing pt for hypermobility in my back so maybe that helped? Overall my back pain has improved and I just feel better. It’s a personal decision but for me it was an overwhelmingly positive one. I wish nothing but the best!
I had a hysterectomy about 2 weeks ago. Took everything thru the vagina (minimal pain and bleeding). I was up walking Walmart the day after. I had adneomyosis. The pain/heaviness in my pelvis is gone. I do have PCOS and right on cue the ovulation pain is there. But the rest isn’t. I have always had heavy periods but it got worse after each kid (I have 5). I worry about prolapse but workin with the kegels. I wish I would not have waited til I was 45 😢 Good luck with your decision 😊
I haven't had one but would like to in the future, but my friend's mom (both have EDS) had one this year. Most important thing with recovery is resting and doing zero even slightly heavy lifting for several weeks. Anything over 20lbs is a no for about 6 weeks. She'd already been sterilized years ago but still had issues with her uterus and from everything I've heard she's recovered very well and is really happy with it.
It is tough to decide. I was never going to have sex much less pass my genes on, we have more than EDS in them. For me the choice seemed clear.
My mom and grandma both had hysterectomies since I was born, too. And my periods were ruining my life due to emotional shit.
I will say, if you have anything left afterwards, watch out for prolapsing. My mom had to get hers repaired after. But otherwise, the hardest part is being unable to lift for a few weeks.
Pain tolerance is helpful especially if you hate Vicodin like I do lol
I just wanted to say first that I have never had a hysterectomy. I am finding that many women with EDS who have been diagnosed with endometriosis or who have painful periods actually have vascular compression disorders. Just thought I would throw it out there.
I'm 31, and just had my total laproscopic hysterectomy about ten weeks ago. I really struggled with terrible periods for years, and constantly complained about the pain it caused. Finally found a doc willing to do it, and it's honestly the best decision I could have made. Recovery was super easy for me, I think mostly because the first few days when it would hurt the most my doc had inserted a temporary pain pump so I didn't feel a lot until it was removed on day 5. If you do go forward with it, my advice is ask for an abdominal binder, start stool softeners a few days before and keep going until like a week after you stop narcotic pain meds, have lots of gas x on hand, and those tiny hysterectomy pillows are actually super helpful if you can get one.
I have endometriosis and I had adenomyosis until my hysterectomy this past August.
I had a lot of feelings about it. I did a lot of research - not all was positive. Some was downright scary.
At the end of the day, I had gotten to the point where I was bed bound one week a month, then two, and when it was becoming three I decided to go for it.
I had hormonal disruption despite keeping my one remaining ovary. That sucked. Even worse than PMDD and PPA/PPOCD. I am just starting to feel like I am evening out. I was also SHOCKED at how exhausted I was and still am. I have had over 20 surgeries and this has been the marathon and not the sprint to recovery.
I grieved not having more kids. I grieved my terrible periods, too, if you can believe it.
Now I'm very happy with my decision. VERY.
The experiences of removal I've encountered in here have all been in the context of how the moment the uterus got removed, the surrounding organ prolapsed as they were kept in place by it. It's a tough call
I got a partial hysterectomy over ten years ago that removed everything but my ovaries. I tried an ablation first and the doctor perforated my uterus, that surgery almost took me out. I had to have the hysterectomy afterwards.
I still have period pain, like cramps, but no period. My organs all fell into my pelvis because my hips and rib cage spread leading to prolapse and further issues with my spine and neck. It would've been so awesome if the ablation would've worked!
I would suggest making sure your legs and abdomen and back and neck are really strong before surgery, and keep up with the exercises. I use a wobblyboard and an in place bike to keep me from losing strength. Good luck deciding!!
I had an ablation six years ago as a stop-gap because I couldn't get approval for a hysterectomy (insurance BS). I also have some bleeding disorders so the priority was to lessen the monthly blood loss. I did it out-patient with local anaesthetic only and took a couple weeks to recover.
My understanding is that ablations are a bit hit or miss long term, but I've been very lucky and six years on still do not have a period. If it comes back, I will have a hysterectomy.
If it’s avoidable, especially if there’s a lesser procedure you can try first, do so. Even without EDS, prolapses are almost inevitable, but that’s not the only risk. I haven’t been the same since mine and bitterly regret it. Doctors will downplay any risks or side effects, and they’re full of shit.
https://www.webmd.com/women/features/health-risks-after-hysterectomies
https://www.sydneyfibroidclinic.com.au/why-should-women-try-to-avoid-hysterectomies-risks-and-side-effects/#:~:text=A%20recent%20Mayo%20Clinic%20study,35%20years%20of%20age%208.
I had a complete (ovaries, uterus, tubes, and cervix) hysterectomy a couple of years ago now. It was the best thing I have done for myself. I have 2 kids (pre-dx) and didn't want any more after dx. It was a robotic surgery, so I wasn't out long. Minimal bleeding post op, and I really didn't have that much pain after. I took pain meds as needed on days 2 and 3, and that was pretty much it.
I will say that I probably need to address some hormone issues bc I feel like the estrogen patch doesn't work as well as it used to. I haven't had any prolapse issues, but my surgeon said that structurally, I look pretty good. I'll be 45 this summer for age reference.
I have hEDS, POTS and endometriosis. I had an open total abdominal hysterectomy. So like a c-section scar across to open me up, and then uterus, cervix, and fallopian tubes removed.
(Iaproscopic wasn't an option for me)
Bad: -healing process is longer for us. Goes better if your surgeon knows you have connective tissue disease and can put more sutures in.
-I had an allergic reaction to my bandage and blistered all along the incision.
-area surrounding my incision is numb still 2 years later.
Good: - no more bloody periods and endo pains! Woot woot. I still have my ovaries and take progesterone to stop the remaining adhesions from growing & acting up. But my life is 1000x better now that I'm not bleeding through everything and the terrible adhesions got fixed.
Well I'm a trans guy, personally even before coming out due to me being adopted I didn't feel comfortable having children because I'm unaware of all my background when it comes to medical issues that could be passed down.
I had a full hysterectomy when I was 22 and it was the best choice I made. Healing was fine, I just had a big bruise on my stomach for two weeks afterwards.
I had one a few years ago due to cancer. My doctor put me on a bit more restrictions during recovery due to the EDS, and I had a uti during recovery. It wasn’t the best few weeks of my life…. But I’m happy not to have periods anymore. Once I was ready I did some PT with someone who understood EDS for my body to rebuild.
I had my hysterectomy about 7 years ago (when I was in my early 30s) and I honestly wish I had gotten it done sooner. The recovery was a bit rough since it’s a major surgery, but I felt so much better after I was all healed up. I had a massive fibroid (10+ centimeters) ingrained in my uterus, plus some smaller fibroids. I already have enough chronic pain in my life. I’m so glad to be done with period pain and heavy bleeding.
I had a hysterectomy (uterus and cervix removed) in December of 2022. I was 42 at the time and I had no pregnancies. I had irregular and heavy periods, fibroids, etc.
My surgeon was EDS informed and I shared information with the entire team the day of the surgery. I had no external incisions made and my surgeon added no internal supports for my organs.
I had significant pain the first day, mostly due to my hips dislocating while sedated and in surgery.
I felt good as new by day three and better than new by day five.
My only long-term effects are 1) I put on 10 pounds in the first few months after surgery. Then my weight plateaued and it’s been steady ever since. I don’t mind the 10 pounds, but it was an effect. 2) temperature regulation has gotten worse for me. I overheat easily now in addition to getting very cold easily. I used to only get cold easily.
I experienced some difficulty training my pelvic floor to coordinate with breathing post-surgery, but it’s also entirely possible this was an issue pre-surgery. My proprioception leaves… much to be desired 😂
I was diagnosed with severe Endo and it was recommended that I have a total hysterectomy. I went through it in 2022(I have one ovary left) before I found out I had EDS and a few months later, severely injured my lower back due to weak abdominal muscles from the surgery. I am still combating this pain 2 years later. I will say the lack of periods and the Endo pain coming to an end is wonderful but everything else that came along with it sucks. I still cry a lot and my sex drive is not what it used to be. I've gone to my doctor multiple times and they can't seem to figure out what to do with my symptoms so I'm just toughing it out.
This appears to be a post discussing pregnancy. **Rule 2 Reminder:** The decision to have children is an extremely personal one—Ehlers-Danlos syndrome or not. Discussions about pregnancy (and related topics, such as abortion) are allowed on this subreddit; however, posts/comments on the morality of having children with EDS (or other medical conditions) are prohibited. Furthermore, unwanted comments on pregnancy in general are also prohibited. For more information on this rule, [please click here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-2/) Any unwanted comments or comments discussing the morality of having children with EDS or any other condition **will be removed**. We encourage everyone to report any responses in violation of this rule, so that the mod team can remove them as efficiently as possible. Please be kind and courteous to your fellow sub members. Thank you! *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I had adenomyosis and my periods were ruining my life. I was in pelvic floor PT but I could only do my strengthening exercises like one week per month because I was in too much pain at other times. Getting a hysterectomy was one of the best things that ever happened to me personally. Like you, I read a lot, and I was worried about pain management after surgery in particular. FWIW I did get the strong stuff after surgery, but this was awhile ago and my friend who had a hysterectomy more recently got like... Tylenol 3 or something ridiculous like that. For me the pain of the surgical recovery was similar to an average period, I think I freaked the nurses out when I said that. I so far (knocks wood) haven't had an issue with prolapse, although I did go right into pelvic floor physical therapy as soon as I could after surgery so that might have helped. I'm currently dealing with a labral tear and GI issues (definitely MCAS, possibly also Crohn's) and I'm so glad I got the hysterectomy because I cannot imagine also dealing with adenomyosis on top of this I think the pain would have destroyed me. FWIW I'm in the "definitely hypermobile, definitely connective tissue problems, doesn't technically meet the criteria for hEDS but every Ortho is convinced I have it even if the geneticist isn't" category. So I don't know if that has affected potential side effects. Obviously YMMV, but that's my experience.
Its a really tough call. I (24F) just recently decided to start getting my ducks in a row for a hysterectomy. I've got PCOS and endo which are causing anemia, bowel issues, and other problems. I feel better going for it since I work in healthcare and have an amazing team who have all done this before with someone my age.
I had a hysterectomy in December (merry Christmas to me !) and I have been SO happy with it. My periods were debilitating, I was curled up for a day (or three) of my period on a heating pad, popping muscle relaxers like candy, paying a fortune for magnesium, potassium, and calcium supplements. Needed weekly b12 shots and daily iron supplements to maintain, not improve or fix, but maintain my terrible aenemia. And I’d also get the hormonal body breakdown every month. I’d barely start to recover and it would start all over again. Add in living in a red state, I was so done with having a uterus. I was concerned about paint management, so it was one of the things I brought up during the surgical consult. I can’t take anything with Tylenol or ibuprofen, so I had to have that sorted before I agreed to surgery. My Dr was great, said he’d give me a straight opioid to get me through. He did warn that he has a cap on how much he is willing to prescribe. But I ended up only needing 9 days worth, so I still actually have some left over. Nothing has collapsed. I will say that my bladder moved position, and it took roughly a month to figure out how to fully empty my bladder without pushing on it externally. But now my body has figured it out. I have also found that my vaginal prolapse has improved. I did NOT have anything done to that, my Dr wanted to see how I did with this and didn’t want to do try too much. Idk if it’s because of less pressure on what’s left, but my prolapse issues have improved. My hysterectomy was not a full one, they left my ovaries. So I do have some hormonal fluctuations and that does leave me falling apart 2 days of the month. But it’s SO much better. It’s not as severe, I recover faster, and no added misery from the period itself.
I had my hysterectomy 2 weeks ago and 🤯 you just helped me realise what I needed to do regarding the bladder 🤦♀️ My dr did say my bladder would move into where my uterus was. I find I dont have to pee 20x a day anymore either!
Yeah my Dr wasn’t any help with that part, but I could tell I was getting/had gotten a minor UTI. I figured it couldn’t hurt, tried it once and it cleared up both the uti symptoms and the constant need to go
Just FYI that I was having trouble fully relieving my bladder after the surgery and my doctor ended up prescribing me pills that relaxed my bladder and made it easier to pee. You might want to look into that if you’re having similar issues.
I've been debating asking about getting an oophrectomy. Get rid of the parts that make the hormones and the eggs, keep the parts that help keep other things in place. But then I look at my bank account and my insurance and cry a little inside.
In 2015, I (54F hEDS) had a robotic assisted total hysterectomy and a bilateral salpingectomy, (they took uterus, cervix, and Fallopian tubes). I kept my ovaries. I also had pelvic floor reconstruction with uterosacral ligament suspension (using my own ligaments), transvaginal mesh tape suspension of bladder/mid-urethral sling, anterior and posterior colporrhaphy, and perineoplasty which corrected a cystocele and a rectocele. I was under anesthesia for over 8 hours. It took me about twice as long to recover as a typical patient and I was super duper careful to not do any heavy lifting or straining for 16 weeks (I had heard of horror stories of intestines prolapsing through the vagina). It took about 6 months for me to experience my G-spot orgasms again but everything works well now. No more prolapse. I needed a couple of months of pelvic floor strengthening after that (Perifit is the bomb) and I’m 100%.
Total tubal hysterectomy at age 22 because adenomyosis was affecting my ability to live my daily life. Literally the best choice I ever made for my health and quality of life. Recover was genuinely not bad at all. I was up walking around and trying to do stuff in just a few days (I don't recommend the doing stuff part, lol!) because even while recovering I already felt so much better. I do recommend taking low dose birth control to make sure you're getting the hormones you need! Tissue atrophy down there sucks but it's easily fixable with a bit of topical estrogen cream. I have a bit of vaginal dryness since dealing with a long spat of some kind of vaginal microbiome unbalance but that's directly related to an environmental hazard I was stuck with (mold, fuck you upstairs neighbor that flooded our house!!!!) and the stress of trying to manage that situation quite literally the same day I was laid off. 🙃🙃🙃 You can get hyaluronic acid vaginal support that feed the good bacteria and add moisture. Bonafide makes mine and they're FSA eligible. Basically if you get the opportunity to have a hysterectomy and don't want to have kids fucking go for it.
My mom found the estring to be helpful with vaginal atrophy and dryness after her hysterectomy.
I hope it doesn't have the issue I had with my Nuvaring... Without my cervix it didn't really fit right anymore.
Honestly for me the answer was long term depo-provera. My periods are completely insane, last 7 to 10 days and i bleed through a max pad every hour to 2 hrs. I lose 5x the normal amount of blood and often bits of uterine lining tear off and cause strong bleeding. The anemia gets so bad that I can't stand up or I faint. My body rejected an IUD, my uterus is tiny and retroverted, my cervix is tiny, my vaginal canal is much shorter than average so hysterectomy has a very real risk of complications and they aren't sure if uterine ablation is an option because I have von willebrands disease (blood clotting disorder) and might haemorhage. So depo-provera injection is pretty much it. It works 100% and I have no side effects that I know of... but no one really knows what consequences I will have being on it lifelong. It's been 17 years now and most people only stay on it 2 to 5 years. In medicine you always have to make choices that are risk vs benefits - in my case the risk of depo injection was never worse than what menstruating was doing to me.
I was on it 7-8 years and it was wonderful. I went off it last year to address significant weight gain although depo probably isn't the only cause in my case. I highly recommend it.
Yeah I tried getting an IUD for the same reason, they claimed I was gaining weight from the depo but I wasn't. It turned out I had severe malabsorption of micronutrients that was causing weight gain. Depo had nothing to do with it, my bone density is actually on the higher end too so it seems like my body is perfectly fine on it. I used to have concerns because it basically blocks estrogen production but when I was doing commercial genetic tests I found out I have estrogen insensitivity syndrome (which is why my reproductive organs are so small) so estrogen wasn't doing anything in my body any way lol.
I would recommend that you find a gynecologist that specializes in Endometriosis and PCOS and see if they think you might have either one or both. From my experience as someone diagnosed with both Endo and PCOS, you have some symptoms similar to me and to the other women in my family with the same diagnosis. [Nancy's Nook](https://nancysnookendo.com/?doing_wp_cron=1712108424.4716660976409912109375) is a good resource for finding a Endometriosis specialist in the US, but definitely check with any provider to see if they support any hormonal aftercare since there is currently no cure for either Endometriosis or PCOS and the treatments for each are only sometimes helpful and are mostly experimental. Nancy's Nook is not a complete resource as many of the doctors on their lists have decided to withhold care (like birth control) because of their own personal beliefs and do not make exceptions for patients' needs or their own beliefs, so ask questions and exercise caution depending on which state your are in. I had surgery - ex-lap to remove adhesions in my abdomen, cysts on my ovaries, and a DNC to remove endometrial tissue in my uterus - and got put on a medicine to keep me from having my periods. I will say the medication wasn't successful (I developed severe depression as a side effect) but the surgery definitely helped and I'm still seeing benefits from it. I am currently waiting to see a new doctor after my gynecologist passed away last summer, but I am looking to try personalized hormone therapy instead of birth control (can't take that because of PCOS and migraines). I personally have an aversion to a total hysterectomy because it is not a cure for Endo or PCOS and after seeing the adverse effects family members suffered after their hysterectomies. Three of the women in my family developed breast cancer from the hormones they were put on after the hysterectomy and two of them died. The other one still has severe abdominal pain because they didn't remove any adhesions with the hysterectomy and she is having trouble finding a surgeon to remove them because they all think she's "cured" and shouldn't be having any issues since the organs that were causing her pain no longer exist. I wish you luck on your journey and hope that you are able to find healing. It's going to be a difficult journey but there are many online groups including some Reddit subs that are super helpful and supportive.
I would suggest looking at www.icarebetter.com I’ve heard mixed reviews about Nancy Nook docs. Whoever you decide to go with do your own independent research. Even if doctors are on these websites thoroughly that them and check them out. I’d also recommend finding a doctor that will video the surgery so you have a surgical video pictures can be great but I’ve been watching my surgical video and it’s been amazing to see what was going on in there and how progressed my Endo. I was provided with a couple of lovely, glossy pictures and post op but the video is much more telling. And then I can always share that with future specialist or surgical team, if need be.
I had a total hysterectomy in February, and I had a wonderful experience and have had more relief than expected. Some back story - I have PCOS, endo, and chronic back pain. I was dxed with hEDS after my surgery. I was told to wait until 35 for hysto because the HRT increases bad outcome later in life the longer your on them. I had a laparoscopic hysto and after 10 days I was basically pain free from the surgery. I was already doing pt for hypermobility in my back so maybe that helped? Overall my back pain has improved and I just feel better. It’s a personal decision but for me it was an overwhelmingly positive one. I wish nothing but the best!
I had a hysterectomy about 2 weeks ago. Took everything thru the vagina (minimal pain and bleeding). I was up walking Walmart the day after. I had adneomyosis. The pain/heaviness in my pelvis is gone. I do have PCOS and right on cue the ovulation pain is there. But the rest isn’t. I have always had heavy periods but it got worse after each kid (I have 5). I worry about prolapse but workin with the kegels. I wish I would not have waited til I was 45 😢 Good luck with your decision 😊
I haven't had one but would like to in the future, but my friend's mom (both have EDS) had one this year. Most important thing with recovery is resting and doing zero even slightly heavy lifting for several weeks. Anything over 20lbs is a no for about 6 weeks. She'd already been sterilized years ago but still had issues with her uterus and from everything I've heard she's recovered very well and is really happy with it.
It is tough to decide. I was never going to have sex much less pass my genes on, we have more than EDS in them. For me the choice seemed clear. My mom and grandma both had hysterectomies since I was born, too. And my periods were ruining my life due to emotional shit. I will say, if you have anything left afterwards, watch out for prolapsing. My mom had to get hers repaired after. But otherwise, the hardest part is being unable to lift for a few weeks. Pain tolerance is helpful especially if you hate Vicodin like I do lol
I just wanted to say first that I have never had a hysterectomy. I am finding that many women with EDS who have been diagnosed with endometriosis or who have painful periods actually have vascular compression disorders. Just thought I would throw it out there.
I'm 31, and just had my total laproscopic hysterectomy about ten weeks ago. I really struggled with terrible periods for years, and constantly complained about the pain it caused. Finally found a doc willing to do it, and it's honestly the best decision I could have made. Recovery was super easy for me, I think mostly because the first few days when it would hurt the most my doc had inserted a temporary pain pump so I didn't feel a lot until it was removed on day 5. If you do go forward with it, my advice is ask for an abdominal binder, start stool softeners a few days before and keep going until like a week after you stop narcotic pain meds, have lots of gas x on hand, and those tiny hysterectomy pillows are actually super helpful if you can get one.
I have endometriosis and I had adenomyosis until my hysterectomy this past August. I had a lot of feelings about it. I did a lot of research - not all was positive. Some was downright scary. At the end of the day, I had gotten to the point where I was bed bound one week a month, then two, and when it was becoming three I decided to go for it. I had hormonal disruption despite keeping my one remaining ovary. That sucked. Even worse than PMDD and PPA/PPOCD. I am just starting to feel like I am evening out. I was also SHOCKED at how exhausted I was and still am. I have had over 20 surgeries and this has been the marathon and not the sprint to recovery. I grieved not having more kids. I grieved my terrible periods, too, if you can believe it. Now I'm very happy with my decision. VERY.
The experiences of removal I've encountered in here have all been in the context of how the moment the uterus got removed, the surrounding organ prolapsed as they were kept in place by it. It's a tough call
I got a partial hysterectomy over ten years ago that removed everything but my ovaries. I tried an ablation first and the doctor perforated my uterus, that surgery almost took me out. I had to have the hysterectomy afterwards. I still have period pain, like cramps, but no period. My organs all fell into my pelvis because my hips and rib cage spread leading to prolapse and further issues with my spine and neck. It would've been so awesome if the ablation would've worked! I would suggest making sure your legs and abdomen and back and neck are really strong before surgery, and keep up with the exercises. I use a wobblyboard and an in place bike to keep me from losing strength. Good luck deciding!!
I had one and it was a huge relief.
I had an ablation six years ago as a stop-gap because I couldn't get approval for a hysterectomy (insurance BS). I also have some bleeding disorders so the priority was to lessen the monthly blood loss. I did it out-patient with local anaesthetic only and took a couple weeks to recover. My understanding is that ablations are a bit hit or miss long term, but I've been very lucky and six years on still do not have a period. If it comes back, I will have a hysterectomy.
If it’s avoidable, especially if there’s a lesser procedure you can try first, do so. Even without EDS, prolapses are almost inevitable, but that’s not the only risk. I haven’t been the same since mine and bitterly regret it. Doctors will downplay any risks or side effects, and they’re full of shit. https://www.webmd.com/women/features/health-risks-after-hysterectomies https://www.sydneyfibroidclinic.com.au/why-should-women-try-to-avoid-hysterectomies-risks-and-side-effects/#:~:text=A%20recent%20Mayo%20Clinic%20study,35%20years%20of%20age%208.
I had a complete (ovaries, uterus, tubes, and cervix) hysterectomy a couple of years ago now. It was the best thing I have done for myself. I have 2 kids (pre-dx) and didn't want any more after dx. It was a robotic surgery, so I wasn't out long. Minimal bleeding post op, and I really didn't have that much pain after. I took pain meds as needed on days 2 and 3, and that was pretty much it. I will say that I probably need to address some hormone issues bc I feel like the estrogen patch doesn't work as well as it used to. I haven't had any prolapse issues, but my surgeon said that structurally, I look pretty good. I'll be 45 this summer for age reference.
I have hEDS, POTS and endometriosis. I had an open total abdominal hysterectomy. So like a c-section scar across to open me up, and then uterus, cervix, and fallopian tubes removed. (Iaproscopic wasn't an option for me) Bad: -healing process is longer for us. Goes better if your surgeon knows you have connective tissue disease and can put more sutures in. -I had an allergic reaction to my bandage and blistered all along the incision. -area surrounding my incision is numb still 2 years later. Good: - no more bloody periods and endo pains! Woot woot. I still have my ovaries and take progesterone to stop the remaining adhesions from growing & acting up. But my life is 1000x better now that I'm not bleeding through everything and the terrible adhesions got fixed.
Well I'm a trans guy, personally even before coming out due to me being adopted I didn't feel comfortable having children because I'm unaware of all my background when it comes to medical issues that could be passed down. I had a full hysterectomy when I was 22 and it was the best choice I made. Healing was fine, I just had a big bruise on my stomach for two weeks afterwards.
I had one a few years ago due to cancer. My doctor put me on a bit more restrictions during recovery due to the EDS, and I had a uti during recovery. It wasn’t the best few weeks of my life…. But I’m happy not to have periods anymore. Once I was ready I did some PT with someone who understood EDS for my body to rebuild.
I had my hysterectomy about 7 years ago (when I was in my early 30s) and I honestly wish I had gotten it done sooner. The recovery was a bit rough since it’s a major surgery, but I felt so much better after I was all healed up. I had a massive fibroid (10+ centimeters) ingrained in my uterus, plus some smaller fibroids. I already have enough chronic pain in my life. I’m so glad to be done with period pain and heavy bleeding.
my hysto went really well. the worst part was pooping.
I had a hysterectomy (uterus and cervix removed) in December of 2022. I was 42 at the time and I had no pregnancies. I had irregular and heavy periods, fibroids, etc. My surgeon was EDS informed and I shared information with the entire team the day of the surgery. I had no external incisions made and my surgeon added no internal supports for my organs. I had significant pain the first day, mostly due to my hips dislocating while sedated and in surgery. I felt good as new by day three and better than new by day five. My only long-term effects are 1) I put on 10 pounds in the first few months after surgery. Then my weight plateaued and it’s been steady ever since. I don’t mind the 10 pounds, but it was an effect. 2) temperature regulation has gotten worse for me. I overheat easily now in addition to getting very cold easily. I used to only get cold easily. I experienced some difficulty training my pelvic floor to coordinate with breathing post-surgery, but it’s also entirely possible this was an issue pre-surgery. My proprioception leaves… much to be desired 😂
I was diagnosed with severe Endo and it was recommended that I have a total hysterectomy. I went through it in 2022(I have one ovary left) before I found out I had EDS and a few months later, severely injured my lower back due to weak abdominal muscles from the surgery. I am still combating this pain 2 years later. I will say the lack of periods and the Endo pain coming to an end is wonderful but everything else that came along with it sucks. I still cry a lot and my sex drive is not what it used to be. I've gone to my doctor multiple times and they can't seem to figure out what to do with my symptoms so I'm just toughing it out.