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Endometriosis Community
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Avatar universal

Endometriosis and hysterectomy! Advice please?

I just read a bunch on here, sorry first time user! i saw a surgeon that specializes in endo. she is really good. she recommends a hysterectomy but reading here, maybe its not a good idea? i have an endo cyst on each ovary 7cm each. stuck together and stuck to my uterus. she said its all 1 big mass. I was in a lot of pain for 2 months, finally got on birth control and the pain has stopped. if a hysterectomy doesnt fix endo, why should I have one? I am 39.
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Avatar universal
A hysterectomy isn't a cure but some women find that it helps. But it should absolutely be the last option. If birth control is working stick with that. Birth control doesn't help me but I had a lap to remove the endometriosis and it helped some. There are pills and shots that can put you into menopause and if they completely fix you symptoms then maybe a hysterectomy is a good idea for you. But if they don't help like they don't help me then a hysterectomy is pointless.
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I have never wanted children so that doesnt bother me at all, but I dont want to go through surgery if my ovaries will still cause pain. my periods are long and painful, she said removing the uterus will stop periods and end my pain. i am only in pain when i have a period. usually the pain would stop when the period stopped but my last 2 periods were done and the pain just kept going for a few weeks, then retured again as soon as my period started. i did not want to be on birth control for fear of the increased cancer risks, so I am torn.
I'd ask about something that mimics menopause. Might work great till you hit real menopause. And It would tell you if a hysterectomy would work. If your hurting outside of your period then it more than just your period setting it off. My doctor put me on depo lupron (mimics menopause) it stop my period but not my pain therefore it's really doubtful a hysterectomy would help me. If it had helped I could have kept taking it or have a hysterectomy to make it permanent. By having a hysterectomy your basically putting yourself in menopause. If you try a menopause mimicking drug and it works then I'd strongly consider a hysterectomy but if it doesn't work then a hysterectomy probably won't help.
My surgeon is a specialist in endo, so should I trust her? she wants to keep both ovaries but remove the uterus. if i keep ovaries wont i keep ovulating and it keep hurting? she said my tubes are clogged up with old blood too which is what might be causing alot of the pain. maybe i should just have my cysts removed?
I'd just have the cysts and whatever endo they can removed/clean out your tubes and see what that does. And for a lot of women the pain is thier ovaries and yeah a hysterectomy doesn't really help that. I'd talk to your surgeon and if she just pushes the hysterectomy which sadly a lot do then get another opinion. Have you had any other surgery for this? Because hysterectomy really is like the absolute last option. Well second to last, the last option is having everything removed.
I havent had any surgery, this will be my very first. i have had painful periods but the last 2 months was the first time the pain just kept going after the period stopped. i have always had ovulation pain, but that only lasted a day and was pretty mild. it just suddenly got so much worse. i will talk to her about not removing the uterus and see what she says. i should probably stay on birth control until memopause. even if i have the uterus removed, if i stopped birth control I would still ovulate and still have pain?
Yeah I'd stay on birth control until menopause but if this just became a big problem and you've barely had time to try any meds or alternative treatments and she already jumping to a hysterectomy I'd seriously find myself a different doc. She is jumping the gun bad. There are many types of birth control some will help more than others. Having the cysts removed and your tubes cleaned out will probably help a lot then stay in a birth control that works for you to prevent regrowth til menopause and you probably will be ok. If not then maybe think about more serious options.
Thank you so much!!
I agree that she is jumping the gun.

I had a hysterectomy at 33, but they took my ovaries. This was like 100 years ago, and it was the best thing FOR ME, and there weren't the treatments there are now.

Leaving the ovaries doesn't make much of a difference. Yes, you remove the uterus, which can help, but if they leave even a dot of endo, the estrogen from the ovaries feeds the endo and you're back to where you were.

I agree totally that a hysterectomy is a last resort option, and if you're in the US, your insurance will view it this way, too. They'll want you to try a ton of different birth control pills and meds, and estrogen-stopping meds before you get the hysterectomy, because the hysterectomy is permanent, and even at 39, they don't think we can make our own decisions regarding having children or reproductive health.

Get the cysts removed if they don't clear up with your next period, or if they are masses, but remember that the more surgeries you have, the more scar tissue you'll get. (Totally a double-edged sword here.)

I also totally agree with staying on a birth control until menopause. I did great on birth control, then went off it - that was during the time when we thought women needed breaks and I hadn't yet been diagnosed though I had all the symptoms - and it all went downhill really fast.

You may end up with it all removed, but there are a ton of steps you need to take before you get there. Keep good records of your symptoms - maybe use a period app to do that - and every time you go to the doctor, get it on record that you are having pain, let her (or whatever doctor you see) know how much pain you are in, what your periods are like, if sex is painful, if orgasms are painful, if bowel movements are painful, etc. The better the documentation, the better the chances of you getting what you want when you want it.

Good luck!
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