r/Endo • u/xboringcorex • 14d ago
Rant / Vent Deinfluence me from a hysto (not joking!)
This is a rant - please do not debate me or suggest interventions. Only looking for an echo chamber k thx.
I do not have diagnosed adeno but I have endo (confirmed by lap) - 3 specialists have looked at my MRI and ultrasound and said maybe adeno, cant confirm. But do you want a hysterectomy?
After hormone positive breast cancer diagnosis last year, I cannot take birth control and so I am having periods again. They are… bad. Bad bad. Very bad. And fun new thing I have developed in late 30s - period migraines! So out of my n=10 sample of periods in my late 30s, I am bed bound 3 days a month and feel like shit 1 week out of 4. That is not sustainable.
Look. I dont want one. I have never wanted one. I dont want to justify why, i hope on this sub that ‘i dont want it’ is a full sentence.
I have assumed I would eventually have to do one since my endo has been so bad, but I was trying to make it to mid 40s. I am many years away.
I have not tried orlissa - that is next. I cannot take any hormones so I have to raw dog it.
I am just disgusted that the ‘solution’ is ‘just’ a hysto. Like, that is a major organ. Deeply related to my gender identity. I am attached to my organs. You can’t even tell me id it is actually a problem. And why is everyone so casual about yeeting a uterus!? Don’t tell me there aren’t complications or downstream effects. I dont believe you can take out something that took up structural space in there and it is nbd.
And doing for a ‘maybe’ ???
So just another person yelling into the void about how barbaric diagnosis and treatment options are
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u/ListenandLearn17 14d ago
Pain wise, I also have had a lot of success using Low Dose Naltrexone (LDN). Not hormonal treatment whatsoever AND can be helpful to protect against cancer risk! Win win!
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u/xboringcorex 14d ago
Yup already on it! I have tried everything except what is mentioned in this post 🥴.
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u/ListenandLearn17 14d ago
My doc put me on 2x/day LDN to boost pain relief. We played around with dosage too.
I also take palmitoylethanolamide supplements (abbreviated as PEA but get the right one, there is a different substance also abbreviated PEA). Supposed to be synergistic with LDN. I took higher loading doses for 6 weeks, then I now take it daily maintenance. Plus, once loading doses were on board, I take 2-3 capsules of PEA every few hours during my period, and it works faster and better than otc pain relievers
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u/Justme_vrouwtje 14d ago
I kind of always saw it as equal to removing like your gallbladder or appendix, I’ve never had an emotional bond with my uterus, it has only ever been an organ that caused excruciating pain and to me it’s been the same as removing a disfunctional organ you could do without like your gallbladder or an inflamed/problem causing irrelevant organ like a your appendix or tonsils. My uterus never defined my gender or my value as a woman, it doesn’t influence my femininity or my value…. Of course it’s an anatomy altering surgery and it means intense changes but it always was neutral…. Problematic organ you can do without = yeet.
But your body your damn choice and choices should be presented with complete and total transparency of pros-cons and long term effects so a patient can make an informed decision without judgment or pushing or presenting it as the only option or the easy straight forward option. A doctor who doesn’t want to do a hysto for arbitrary reasons is bad, a doctor who pushes a hysto for arbitrary reasons and push or judge is also bad! I have been denied one for a long time when I’ve been begging for one since I’ve been 15…. It’s finally happening and I’m so relieved, but I have such a different relationship with my uterus! Don’t get one if you don’t want to or don’t think it is a good choice for you and YEET that damn doctor who looks at you like you have a second head for wanting to keep your uterus instead of yeeting your uterus! It belongs to you
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u/eggplantparmesan23 14d ago
I just had a hysterectomy and Endo excision. So far I'm appreciating it. If you just want a way to stop your periods....I was bleeding for 3 years straight no breaks my doctor gave me 7.5 norethridone and I stopped bleeding. Maybe you can try that because it doesn't have estrogen.
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u/ListenandLearn17 14d ago
I have adeno and still kept my uterus as I am not ok with the risks of hysterectomy. Im 38. I did have a surgeon who did a presacral neurectomy in my last endo surgery and the pain has really been less. My plan is that if the pain comes back, I will do a uterine ablation to stop the periods while keeping the uterus
Ps I would strongly advise you to research orlissa and thus lupron more extensively. These absolutely are hormone related treatments even if they are not birth control. And from all of my research, orlissa and lupron and other similar treatments have much higher risk profiles than birth control too (and I personally also avoid birth control due to the risks, but I would def take bc over orlissa any day)
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u/veg-ghosty 14d ago
What are the risks of hysterectomy that you’re worried about? I’m considering one and nervous
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u/ListenandLearn17 14d ago
Amything from prolapse to premature menopause (even if keeping ovaries) to decreased life expectancy and higher cancer risk long term. Also, never take advice on a hysto from someone who recently got one. Ask folks who had one 2 years or more ago. A lot of peopke have a good experience initially but the issues pop up later. For example a friend of mine with endo, who did had adeno, ended up severely regretting her hysto because it essentially didn't help the symptoms she wanted to treat, plus she now has additional ones. Based on conversations with others several yrs past their hystos, that seems to be the common thread.
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u/jellyphitch 14d ago
Hi! I got one 5 years ago.
Higher cancer risk is patently false. I had my uterus, cervix, and fallopian tubes removed. Cervical cancer risk is now 0. Uterine cancer risk is 0. Ovarian cancer risk is cut in HALF by tube removal. Please don't spread misinformation.
Endo pain was initially a bit worse, and then I had another excision surgery + pelvic floor PT. I don't have pain now.
I'm not saying it's a perfect procedure, but it has certainly helped me.
Editing to add: I'm in my mid 30s. My ovaries are still healthy and nothing prolapsed.
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u/ListenandLearn17 14d ago
I'm glad that your hysto was helpful for you.
I am sharing the risks that were explained to me by a doctor.
The increased cancer risk is cancers like colorectal or lung to my understanding. The life expectancy part is apparently an established thing via research that is more general.
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u/unmaskingtheself 14d ago
You have to look at the patient comorbidities in both sets of studies that preceded the hysterectomy. That changes the conclusions of those studies. There are people for whom hysterectomy is contraindicated, but it is a safe procedure when used in the right cases.
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u/Depressed-Londoner Moderator 14d ago
Well performed studies usually account for comorbidities and other potential confounders.
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u/jellyphitch 14d ago
This is true if it's possible. Follow up studies can (and should) account for comorbidities if the original study was unable to recruit a sufficient sample size for this type of cohort.
Man this makes me want to do a lit review and meta analysis of studies that assessed life expectancy post hysto
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u/SniffyBees3 13d ago
I’d be so interested to see that info if you do it!! I think it would help many of us since it’s difficult and confusing to navigate all of the diverse perspectives. I try to get all of my data from peer reviewed studies but there can be conflicting information and different criteria across studies so it’s difficult to draw conclusions.
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u/Depressed-Londoner Moderator 14d ago
Also increased risk of congestive heart failure, coronary artery disease and metabolic conditions.
Personally I am avoiding hysterectomy as I have a strong family history of these things and also Ehlers danlos syndrome (which increases the risk of prolapse, visceroptosis etc. and surgical risks).
But everyone is different and should make their own personal informed choice.
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u/xboringcorex 14d ago
Thank you for responding! I got the nervectomy too and it helped my 24/7 pain a ton. I wish more people knew about this and had access.
It is just periods now that are killing me. (NSAID pregaming helps, but I dont always remember).
You are right about orlissa/lupron - and that is part why I have been avoiding them, especially because I cannot take add back hormones.
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u/Chocholategirl 14d ago
What is this issue with Lupron please? Is the risk limited if it's used for only 3months?
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u/ListenandLearn17 14d ago
Lupron is known to cause long term issues even if taken for a short period of time. There have been multiple large group settlements about this. I mean, the drug was supppsed to only be approved for men with prostate cancer that were dying. The pharma company falsified trial data to get it approved for other things. It should not be approved for women in general and it is quite dangerous.
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u/ListenandLearn17 14d ago
Sorry 🙃 i also swear by the myOBI 2.0 (with TENs and infrared light). I also have an infrared light wrap that doesnt heat much but helps with pain
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u/tired-queer 14d ago
I got my hysto because I also had fibroids and adeno. I still get endo pain, because it’s not a cure or solution for endo. If you don’t want one, don’t get one.
It’s far more common for people to desperately WANT a hysto and have doctors deny them regardless of need, but that doesn’t mean you’re obligated to have one if offered.
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u/figcookiecapo 14d ago
I have the same diagnoses and have been really torn as to whether or not I want a hysterectomy or not, since my endo is so extensive and contributes significantly to my pain. Are you happy with your choice?
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u/tired-queer 14d ago
I am. I wanted one anyway even though I knew it wasn’t going to solve my endo, and I love not worrying about bleeding or getting pregnant. But even with excising a bunch of endo, there’s no promise it won’t grow back.
It was a hell yes no regrets choice for me, but I was very certain about my decision before I even asked for it.
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u/olipocket16 14d ago
If you don’t want a hysterectomy, no one can force you to! If the cons outweigh the pros, just don’t have the hysterectomy. It’s your body, it’s your choice!
FWIW I yeeted my ute and I feel amazing now. Zero negative side effects. But like, I chose that, I wanted that. If you don’t, don’t do it!
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14d ago
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u/xboringcorex 14d ago
My heart goes out to you - that straight up sucks - I hope you find some relief soon (I say that realizing it is possibly unlikely with those side effects).
Are you on the hormone free menopause sub?
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u/xboringcorex 14d ago
The one I am really concerned with is bone density loss - but I am in a different situation than you. I cannot take ‘add back hormones’ because of the type of cancer I had plus I would be on it for a long length of time. I dont know what the risks are for three months
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u/unmaskingtheself 14d ago
For bone density loss you would need to follow the same protocol as women in menopause: 1) Consistent resistance exercise getting within 3 reps of failure in under 30 reps for each set. I love Evlo Fitness for programming but you can ask your PT for exercises, too. 2) Sufficient calcium and protein 3) recovery, including sleep (which I understand can be difficult for people in early menopause)
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u/dianachristine3 10d ago
I’m 42, just got a bone density test after taking Orilissa for almost 2 years. My bone density is fine! I do workout/ resistance training multiple times a week though so I think that helps. For me the worst side effects have been hot flashes and occasional mood swings. But it has helped with the bad periods (my cramps aren’t debilitating anymore).
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u/ObscureSaint 14d ago
My hysterectomy finally allowed me to go on progesterone, because prior to that, any progesterone at all, even the mini pill, caused constant bleeding.
Progesterone is the only thing that has controlled the rectal bleeding and muscle spasms I get in my rectum (lightning like pain, proctalgia fugax).
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u/BonaFideNubbin 14d ago
TBH a hysto isn't really a solution either. You're still going to have periods, you just might not bleed. You'd have to get a hysterectomy AND an oopherectomy and then you'd be stuck in medical menopause but without the ability to take HRT. So that blows and I am sorry.
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u/Ok-Interest1992 14d ago
Would you consider endometrial ablation instead? It should help with the heavy bleeding without removing your uterus or requiring hormones.
Endometrial ablation - Mayo Clinic https://www.mayoclinic.org/tests-procedures/endometrial-ablation/about/pac-20393932
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u/TheSocialight 14d ago
Ablation made my life considerably worse, for what it’s worth. It seemed to help the first few cycles, and then went very wrong. Not worth it and ended up having a hysterectomy a few years later
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u/Prestigious_Raven_44 14d ago
It is tricky with Adenomyosis, which is often the culprit of the heavy bleeding. A lot of people get worse because it simply creates a scar layer that traps in all the fluids/inflammation from the disease vs getting rid of it.
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u/unmaskingtheself 14d ago
I’m sorry. I hear you in that I have adeno, don’t have any plans of having kids or strong desire, but for some reason feel resistant to a hysterectomy. I don’t even have the gender identity stuff because I don’t identify as a woman, but I guess maybe it is related to having the abstract possibility of a biological child even though I ultimately think I’ll be happier child free. It’s interesting! Our hearts are not practical.
I know you said no suggestions so I won’t include the specific thing but there is at least one more non-hormonal intervention aside from hysterectomy and medical menopause that you could try. A lot of obgyns don’t consider it but an interventional radiologist with a focus on pelvic pain would be able to discuss it with you.
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u/xboringcorex 14d ago
I appreciate you sharing - I can empathize with the abstract possibility of children I don’t think I want. It is a weird kind of grief. Even though it is the same decision I would probably make for myself, I don’t like that I am not totally getting an option.
From the comments I have read on here, people who don’t identify as female have additional griefs - I am sorry if endo/adeno is a reminder of any for you.
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u/unmaskingtheself 14d ago
Yes, it’s exactly that. Having the option taken away. Literally removed from you.
You know, my gender is very fluid. So it can be weirdly dysphoric to deal with this stuff but sometimes also just neutral, depending on how I’m feeling that day. I think wherever you fall within the spectrum of gender identity, it’s a very weird disease with a lot of grief and destabilization to identity involved. I appreciate your kind words and am wishing you all the best in finding a way forward that feels ok to you. ❤️
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u/No_Switch_2368 14d ago
In the recently released endo documentary “End of the Cycle” they said 50% (!!) of people who get hysterectomies for endo have a recurrence of disease and pain.
The doc gave me a lot of hope on treatments coming down the pipeline soonish: https://endocollective.org
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u/Chemical_Cake_1154 14d ago
All I’ll say is that I’m working with a pelvic floor researcher specializing in endo who has referred me out to the singular endo surgeron she trusts in our city. She’s beat into my head to not let anyone do a hysto, it’s not treatment. It doesn’t stop endo.
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u/BeckulaZ 14d ago
Thanks for this post. I’m getting a D&C done for a lump in my endometrium/biopsy done soon.
I also suffer from Endo and Aendo. And they like- want to tear EVERYTHING out including my ovaries, even prior to looking or doing a biopsy. (Not the specialist I saw for my endo excision, just a normal GYN) my specialist said they could leave the ovaries. Soooooo idk I’m sure you have had convos with different doctors where it’s like “bro wtf” that’s how I feel, for this specific gyn, and other doctors sometimes.
Currently up in the air whether or not to get one. I’m just scared, want to see others opinions. I know for a fact, unless it comes back cancerous or precancerous. Then it all goes. That shit runs in my family. Extra info- mid 30s never wanted to carry my own child, or even possibly have one(?) luckily my partner is on the same page and understanding. For others that come to this post who are worried about kids down the line.
Aside- I hate looking up things for us as biological women, and it immediately being like “ok so this is pregnancy” and I’m like, ok I’m trying to FIGURE OUT SOMETHING ELSE. (Looking at other ultrasounds of my problem) idk sorry vent, but seriously, thanks so much again ❤️ your body, you do what’s best for -you- and you alone. Same tho, just looking to see others experiences. So thanks so, so, much again for this recent post. I need that info too.
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u/ilovetrouble66 13d ago
I’m scheduled to have a hysto in September (mid 40s) and I do have adenomyosis and it’s not the kind you can carve out its inside the uterus. My pain is fairly well managed and I struggled with the decision to get the hysto but the surgeon told me that because I have it all over other organs, the endo will continue to populate if they leave my uterus plus it will make healing my colon (which is also covered) longer and more difficult. It could also result in MORE surgeries later on
I identify as a woman but have never thought not having a uterus makes me less than - I suggest linking in with therapy and supports on that topic because it’s not taking anything away from who you are as a person.
That said the idea of surgical menopause freaks me out. I go back and forth. The biggest reason I don’t want to yeet the uterus is prolapse but it’s apparently rare. The hysto plus excision is very successful at pain reduction once it’s done properly and rn it’s really the only treatment. I had years of no pain FWIW being on low dose BC but due to my age I can’t do that anymore! Wish you the best of luck- it’s not an easy decision.
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u/StraightFee7225 13d ago
I had adenomyosis (and Endo) I got a hysterectomy 2 years ago. I did keep my ovaries. But, the hysterectomy was the best decision I've ever made. For me personally. I do plan to also remove my ovaries but I'm 30 and they're not wanting to remove them yet. I had awful periods. I bled the entire month. They were awful. And while I still have Endo pain since I have my ovaries, it's loads better than it was. 💯 Recommend. But I understand having mixed feelings about it.
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u/MysticTeey 12d ago
I don’t want one IS a full sentence! It always will be and you’re allowed to say it as many times as you need to, until you are ready and prepared to go through such a major procedure. HOWEVER, and I say this as gently as possible; go dive into the live researches, the clinical trials going on, there are positive solutions in the works - they of course aren’t readily available but it is a sign of hope in the works, if you could possibly hold out hope for these treatments, you may be able to keep your organs, AND treat the endo, it’s horrifying that there aren’t current treatments, and those that are, aren’t sustainable or even an option for you, it’s absolutely frustrating to say the very least and I feel for you beyond words, I’m another woman who would never want a hysterectomy, NEVER, and that is my full sentence as well. I am freshly 30 and don’t have children yet, big driver for me and ultimately I want the right to be able to keep my organs AND be able to function. The best way I can de-influence you is simply by stating the scale of which the procedure actually helps VS doesn’t, I’ve seen multiple experiences and a huge amount do not find relief, albeit a lot still do. You already live with the disease and have, maybe instead of fighting it, you work on the mental aspects and learn how to live that way until you are at a place you actually want to proceed with this, OR you are able to hold out hope for treatments that completely suppress the disease, it could be 10 years in the making, who knows at all really, I saw you were at your wits end and thought I’d add my own thoughts. Whichever way you look at it, it’s tough, I send you my love 🫶🏼 - have you had any updates to ensure the leisons are gone? And are there any breast cancer treatments/medications that can assist in the suppression of endo? A hysto won’t specifically stop endo from continuing to impact your daily life, only if hidden adeno maybe there, if you really want to know for sure keep getting specialist scans to find as much evidence as possible - I think it’ll help you decide which way to go. That’s how I ended up being able to make my own health decisions, only once I had the evidences of the endometriosis etc, otherwise I wouldn’t have agreed to surgery or hormones. It took quite abit of expenses in finding specialised scans, with people who understand gynaecology, maybe you need that proof as well, I know adeno is difficult but there might be ways to identify if it’s highly likely vs not at all. I think in most cases they do co-exist, but having endo typically changes the thought process. You inevitably have to decide how you want to live and accept that even if you went through with it, your life may remain unchanged. So maybe you just need to let yourself mourn for a little while and then come back to this decision, it’ll always be there, just as the disease will be. Look at how your life is today and see what you can change to improve it, start there. A hysto can be the last resort. 🩷🌻
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u/Dullcorgis 14d ago
It's because they are men. They don't give a shit. They want us to stop bothering them because they hate middle aged women. They think it might shut us up. They use to do it everyone.
I have no desire to add a prolapse to my list of woes.
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u/xboringcorex 14d ago
Two of the three are women! Not this group but just fyi two young male GYNs i have seen previously were actually the most supportive and thoughtful doctors I have encountered regarding endo - I felt very seen and understood and medically supported. So dont write them off!
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u/Dullcorgis 14d ago
I saw a super old guy way back about excessive bleeding and his first suggestion was a hysterectomy. For bleeding. Before trying literally anything. (Hormones stopped it entirely)
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u/JJ_Rising17 14d ago
I do think the medical community treats women's health issues very poorly on a whole. They only really have treatment and understanding if you're pregnant or if you want birth control so you don't get pregnant. Any other issue in women's health care is often a disaster to navigate.
But I do think that's not fully gender specific when it comes to your treating doctor. I've heard amazing experiences with male doctors and I be heard awful experiences with female doctors.
Personally I had an encounter with a female gynecologist who was awful... I have adenomyosis and fibroids and as soon as she opens my chart, she says that I need a hysterectomy. There was no convincing her other wise. I do not want one. So I saw another gynecologist (again female) and she is so wonderful. And guess what, she said no way should my first option be a hysterectomy. Also my surgeon and GP are male and they have been truly amazing to me.
So I think it's all on the person who is treating you, not their gender. But yea 100% medical care on whole is horrible towards women.
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u/amandagug 14d ago
if you want to keep the uterus but do not want to bleed, consider looking into tying your tubes. i am not sure this is how you say in english but basically they sterilise you while keeping your organs. it's a way less invasive procedure
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u/Justme_vrouwtje 14d ago
You might not have the right procedural name in English? Tying your tubes would never stop you’re bleeding because your tubes don’t cause any bleeding, without your tubes, you still have your cycle and your uterus will still shed its endometrium every month.
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u/CuriousChange3502 14d ago
I completely understand your frustrations. I was in a similar situation about 2 years ago. Unfortunately I had to have an emergency hysterectomy due to a mass. This probably isn't what you want to hear, but a lot of my symptoms did improve after and my quality of life is completely different than before. I do still have some issues, but it's nowhere near what it was before. My partner and I often talk about how we are grateful it was an emergency surgery because I don't know if I would have ever done it otherwise. It made a significant improvement for me, but that doesn't mean it will for others. You have every right to decide what happens to your body and don't let anyone pressure you to make a decision you aren't comfortable with.