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Hysterectomy for endometriosis

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Posted 1/25/2025 4:06 AM (GMT -5)
I am facing the decision of getting a full hysterectomy due to bad endometriosis all over my pelvic area (uterus, ovaries, everything, and a part of the intestine) and adenomyosis.
I am 30 years old, I don’t have any children and do not plan to have. Pregnancy in my condition would be a big risk anyway.
I have a lot of questions in my head, could you guide me a little? smile
Even if you only answer one question, it will be a huge help for me…

- How long did it take for you to recover after such a surgery?

- From what I understand, after surgery I will naturally go into menopause, does HRT prevent this?
- Will my body have as many hormones on HRT as a normal healthy person my age?

- How do you feel on HRT? Is your mental health more stable?

- Such a surgery is a hormonal roller-coaster - has your body changed in any way because of it? I mean weight, breast size, etc.
- Has your libido changed in any way after the surgery?

I know, a lot of questions, but I wanted to ask because this is a very important decision for me
Posted 1/25/2025 11:25 AM (GMT -5)
Hi Anna, you have quite a bit going on that is going to need treatment.

Yes, you will need HRT, it may take a bit of time to get you on the correct dosage. I went months after surgery & thought I would lose my mind, lol. I finally saw my pcp & he helped me out.

Healing is an individual thing, usually 6 weeks to heal, however, with bowel resection you may have issues with food until your bowels get back in synch. Much of this will depend on how much is removed. With bowel involvement I would not ignore the situation.

Get a second opinion & make a list of questions. If you end up staying with your original dr, make a list of questions so you get the right answers.
Posted 1/25/2025 2:42 PM (GMT -5)
Hi...I had a total hysterectomy at age 39 ( 1993) because of fibroids and endo. I haven't regretted it a day...except the first night after surgery was painful and I was extremely nauseated. Demerol was my friend.

I was started on oral premarin after a bit of time...I don't remember how long or the dosage. The hot flashes and sweats sucked at the beginning. My UC was flaring at the time, which made things much more frustrating. It took about 4 weeks to start to feel much stronger and by 8 weeks I was back into full-time classes with no issues.

I've been on an estrogen patch (soy derived) since 1998ish because of elevated liver enzymes and liver disease.

Are you having a bowel resection as well? Or will the endo areas be cleaned off?

q
Posted 1/26/2025 1:01 PM (GMT -5)

straydog said...
Hi Anna, you have quite a bit going on that is going to need treatment.

Yes, you will need HRT, it may take a bit of time to get you on the correct dosage. I went months after surgery & thought I would lose my mind, lol. I finally saw my pcp & he helped me out.

Healing is an individual thing, usually 6 weeks to heal, however, with bowel resection you may have issues with food until your bowels get back in synch. Much of this will depend on how much is removed. With bowel involvement I would not ignore the situation.

Get a second opinion & make a list of questions. If you end up staying with your original dr, make a list of questions so you get the right answers.

Thanks!
This is my third doctor, but first endo-specialist, and one of the best in my country so I trust him.
Unfortunately I'll need a bowel resection as my intestine is narrowed by 25% in at least one place due to endo.
It's 4rd grade endo with frozen pelvis so everything have to be taken out if I decide to have a surgery.
Posted 1/26/2025 1:03 PM (GMT -5)

quincy said...
Hi...I had a total hysterectomy at age 39 ( 1993) because of fibroids and endo. I haven't regretted it a day...except the first night after surgery was painful and I was extremely nauseated. Demerol was my friend.

I was started on oral premarin after a bit of time...I don't remember how long or the dosage. The hot flashes and sweats sucked at the beginning. My UC was flaring at the time, which made things much more frustrating. It took about 4 weeks to start to feel much stronger and by 8 weeks I was back into full-time classes with no issues.

I've been on an estrogen patch (soy derived) since 1998ish because of elevated liver enzymes and liver disease.

Are you having a bowel resection as well? Or will the endo areas be cleaned off?

q

Thanks, it's encouraging to hear!
Unfortunately I'll need a bowel resection as my intestine is narrowed by 25% in at least one place due to endo. And most of my pain actually comes from bowels
Posted 1/26/2025 1:33 PM (GMT -5)
Anna, I was 32 when I had my hysterectomy & like Quincy said it was great to be free of those problems.

I have crohns disease & had to have 12 inches of my bowel removed, it was an emergency surgery. You don't want to let things get out of control with your bowel issue.

Keep us posted.
Posted 1/27/2025 1:41 PM (GMT -5)
Anna and straydog...what part of the bowel is/was affected?

Anna...with complete hysterectomy, HRT estrogen keeps whatever areas of endo controlled if there are any cells not removed during surgery. Being free of the hormonal cycle is a good thing with no horrific periods...yay!
q
Posted 1/28/2025 3:20 PM (GMT -5)
@Q, my small bowel resection was done out of the country, we don't speak Spanish & they didn't speak English, it was a mess. First the surgeon took out my appendix to find nothing wrong, so he opened me up lower & found a complete blockage & abscess. I was too sick to know what was going on. The surgeon grabbed a scrap of paper & drew a picture of my intestines & the surgery. The day I was discharged from the hospital the surgeon gave us a hand typed report with so many errors. However, the surgeon saved my life. Not how we wanted to spend a vacation. I would have to do some digging around to find the papers, this happened in 2002. They didn't have modern conveniences there like we had in the states back then.
Posted 1/29/2025 4:46 PM (GMT -5)
straydog...unexpected shocking story...oh wow!!!! A relief he was a good surgeon and did further exploration and did what was needed to save your life. How long was recovery, and how long did you stay there before you could go home?
q
Posted 1/29/2025 8:50 PM (GMT -5)
Q, absolutely the surgeon saved my life. I spent 5 days in the hospital & 3 additional days at a hotel. I was provided a wheelchair so we were taken to the front of the line going through customs both times.

Six weeks prior to this I had my gallbladder out, lots of anesthesia. I ended up with chronic diarrhea for 2 years. I never knew when it would happen, I was pretty much home bound. I got in a vicious cycle of thinking if I didn't eat the diarrhea would stop, boy was I wrong.
Posted 1/30/2025 2:16 PM (GMT -5)
That mental cycle is understandable...unless supplemented well, it can go south quickly. 😳
q
Posted 1/30/2025 2:17 PM (GMT -5)
Anna...when will your appt be with the specialist?
q
Posted 1/31/2025 12:42 PM (GMT -5)

quincy said...
Anna and straydog...what part of the bowel is/was affected?

Anna...with complete hysterectomy, HRT estrogen keeps whatever areas of endo controlled if there are any cells not removed during surgery. Being free of the hormonal cycle is a good thing with no horrific periods...yay!
q

Thanks!
Mine is within pouch of Douglas and also really low on the rectum...
I've already seen a specialist and had all the tests
Now I have to make a decision about surgery, but it is not easy.
In my case it would be a really tough and long surgery.
I don't feel like my symptoms are serious enough to risk a stoma right now (which the doctor mentioned as a possibly risk I have to take because even if they are one of the best in my country it is still a high-risk surgery).
Posted 1/31/2025 1:55 PM (GMT -5)
I didnt realise stoma was in the plan...you're right that it's a serious decision! However, is the hysterectomy still in the plans? With that done, and you on HRT, at least those areas won't grow with each period, and hopefully less grief.
q
Posted 2/2/2025 4:34 AM (GMT -5)

quincy said...
I didnt realise stoma was in the plan...you're right that it's a serious decision! However, is the hysterectomy still in the plans? With that done, and you on HRT, at least those areas won't grow with each period, and hopefully less grief.
q

Yes, actually stoma is not part of the plan but the doctor said there is a very high risk that I will need at least a temporary stoma to heal and there is also risk of permanent stoma as well, but of course they'll do all they can to avoid that
Posted 2/4/2025 2:02 PM (GMT -5)
Ohhh, that's a lot to mentally digest. Have you checked out the Ostomy forum ... you could ask further questions on there regarding their experiences and support.

Do you have a time period of when you'd be having the surgery done?
q
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