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Anyone had a total hyster due to endo? Anyone had a total hyster due to endo?

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Unread 01-18-2004, 03:13 PM
Anyone had a total hyster due to endo?

I am scheduled to have a total hysterectomy and bowel resection on March 1st. I have a severe case of endometriosis. I have been on Lupron and bc pills and although the Lupron worked well, the endo grew back after treatment ended. I am scared to death. I am only 37 and don't want to go through menopause at this age. I can't take HRT because it will make the endo grow back
Anyone had to have a hyster without being able to take HRT? Anyone had it due to endo? HELP!
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Unread 01-18-2004, 03:39 PM
Anyone had a total hyster due to endo?

My situation is very similar. I am scheduled for TVH/BSO on 4/12. I was on Lupron for 6 months and while I had no periods everything was great. But as soon as my periods resumed, so did the SEVERE pain. Then I tried birth control pills but I had continuous bleeding for 7 weeks and my legs were swollen every night. I would also like to hear from anyone who had their hysterectomy due to endometriosis.
Unread 01-18-2004, 04:25 PM
Hysterectomy due to endo

The reason for my TAH/BSO was due to severe endo. I had a laproscopy, D&C, Hysterscopy in April 2003 and was diagnosed with endo. Doctor removed, burned, etc. the endo. Endo was back severely in September 2003, the back pain and cramping were unbearable. Doctor and I decided that hysterectomy was the best way to go. I had the TAH in October, 2003, at 39 years old. The pathology report came back with a diagnosis of cervical cancer so...I guess it was good that endo/pain came back. The cancer cells didn't show up in routine pap smear, Laproscopy, or a cervical polyp that was removed in April. I didn't begin HRT until a week after surgery...but I was beginning to have horrible hot flashes and mood swings; so I knew that HRT was the right thing for me. Doctor will monitor me closely due to the cervical cancer and the possibility of endo growing back. (I thought after hysterectomy...I was going to be through with pelvic exams and pap smears, boy was I wrong on that!!) It was my decision to take hormones, he recommended it but left it up to me. I did lots of research on Hystersisters, asking friends/relatives, etc. before making final decision. I also teach first grade and was really afraid if I didn't take the hormones that my job would suffer.
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Unread 01-18-2004, 04:46 PM
Anyone had a total hyster due to endo?

I also have severe endometriosis and have been advised to have a TAH/BSO. I will probably have this in May. I have had 3 laps and one hysteroscopy and dnc. I have also used Lupron for 3 months following second lap. I have also tried bc pills. I am 34, the same age my mom and grandmother had this same surgery. I am nervous, but hope this will be better than 2 week long periods and insane cramps during period and middle of month. I would also like to hear from others with same issues.

God Bless!

Unread 01-18-2004, 07:28 PM
Anyone had a total hyster due to endo?

I had my hyst due to severe endo (stage 3-4), cysts and adhesions, and bigtime pain. I will be getting hrt, but I'm off it for a while to starve out the endo. You can go onto hrt - you don't have to go without it for the rest of your life. I'm 36 and my surgery was 12/10. There is a chance the endo will come back, so that's why I'm waiting a while to start hrt. If you start too soon on hrt or keep your ovaries, that seems to lead to trouble with endo in the future.

I had lupron but had a bad reaction to it. I also was perimenopausal since the summer, so I am pretty used to hot flashes, they don't really bother me. My mother and grandmother also had this surgery. My grandmother kept her ovaries but wound up with ovarian cancer, so even if mine had been working (they were shot) I wanted them out, out, out.

The advantages for me so far:

No pain. Yep, really, I mean, an advil now and then if I rush around too much (I'm not even 6 weeks done yet), that's it. I'll probably be able to buy a steak dinner for me and my dh on the yearly savings on Advil, alone.

No freaky-deaky hormone fits from PMS. I mean, I could cry sometimes if I dropped a stupid paper clip, how daft is that.

I figure I've missed at least 4 periods now. And -all- that goes with them. Woo hoo !

I'm not cleared for intercourse yet but let me add outercourse is perfectly fine :-).

Do I miss my 'womanly parts' ? Like I miss the Black Plague. Has it made me 'less of a woman' ? Since the op, I've wanted to have sex again, and the bonus now is that I won't cramp, hurt and bleed afterwards, so I think I'm 'new and improved' woman now. And there's no 'sorry, honey, I have my period...again......'

Is menopause a big deal ? Not for me. Actual experiences may vary !

What have I got ? My life back, essentially.
Unread 01-18-2004, 07:52 PM
Anyone had a total hyster due to endo?

Thanks for all your input. I have been really leary about having all this done but I have had some weird things go on recently that reassured me. Yesterday I got a few books at the library about menopause. I picked up one on the way out about hysterectomy. While I was in line to check out, I looked down and the book was written by my doctor. Strange I thought..then today a friend of mine called. I haven't heard from her in a year. She is actually now on vacation in Florida. She had a hysterectomy when she was about my age. She said something just told her to call me. Weird huh? God works in mysterious ways.
Thanks All. Keep the advice coming. I need all I can get.
Unread 01-19-2004, 02:58 AM
Anyone had a total hyster due to endo?

I'm going to be having a SAH/BSO the first week of April (date to be determined at my first pre-op appointment on Feb 6th.)

I was diagnosed with endo nearly 4 years ago now. It was already at stage 3 at the time, it had silently crept up on me until the pain was just horrible. I was on Lupron for 6 months, but it caused me to have a mini stroke. I've been advised to not take synthetic female hormones, because of the risk of stroke. Anyway, the last two years, I was trying to get pregnant. Last April, I had a laparoscopy, because none of the infertility treatments were working, and the doctor said that i had so much endo and adhesive tissue that there was no way i could get pregnant. Then there was the pain...a week or two in bed every month...I literally can't do anything. Today was a very bad day, in fact. Anyway, the doc said (and it's been confirmed by three others) that the only way to alleviate the pain and remove the scar tissue and endo would be to have a hysterectomy and remove the ovaries. I am extremely estrogen dominant, so it's important that the ovaries go, but the doc believes he can save the cervix, remove any endo that's there, and cauterize it so i don't have mini periods. I didn't want to choose a hyster, and was saving it for the last resort. However, i realize now that it's the only way i can get my life back. I'm tired of the pain, I"m tired of the way the pain meds make me feel, I'm tired of feeling completely useless and that I cannot contribute to my family when I am in pain and drugged up. I'm actually looking forward to surgery at this point. The pain recovering from that cannot be any worse than what I feel now.

Sorry if it sounds like i'm trying to be a's been a hard, painful, teary day, and i'm just realizing how much better i'm going to feel in a few short months. i'm glad to have found this site, and all the support we can give each other.

a giant hug to everyone!
Unread 01-19-2004, 08:59 AM

hello,yes i had endo and a tah a year and a half ago.i feel great!i was put on the climara patch right after surgery and no endo has returned!its hard to beleive its going on 2 yrs !it is so great to be pain free!peggy
Unread 01-19-2004, 09:09 AM
Anyone had a total hyster due to endo?

I'm sorry you feel so awful, Jalynne. I hope your hyst goes well. All I can say to try to make you feel better, is that once the train wreck that was my uterus & company was removed, I was MUCH happier. I feel better, and I mean it, than I had in years at only week post-op, no painkillers. Getting rid of the pain was wonderful. Getting control of my emotions - no out-of-whack hormones - was a big bonus ! When I think of all the tears I've shed, I should have bought stock in Kleenex.

I also had my cervix removed, and I honestly don't think it will make any difference in my life. The pain of recovery from surgery was small beans to the constant awful pain I had been suffering. This is major surgery - it's not taken lightly by me. I had a good surgery and only the most minor complications (don't overdo after the surgery ! I mean it ).

Endometriosis keeps growing....that's how it is. The longer it's allowed to grow, the worse it messes up the rest of your organs. My mother had it wrapped around her spine and in her bladder. She had a great surgeon; she had her hyst and she never had a problem with endo again, and she is still on hrt. I'm glad I didn't wait to have my hyst, as I could have gotten worse, and the adhesions on my bowel and bladder would have invaded the tissue. And no surgeon can remove all the endo - it can be in spots, microscopic, and will grow if given estrogen, as my doctor tells me. The idea is to starve it for a while, for me, by not supplying me with hrt. So I am happy I didn't wait, I was on the edge of a lot of trouble.
Unread 01-19-2004, 11:24 AM
Hyst due to Endo

Hello there,
I am due to have TAH/BSO & surgery on bowel on 30th Jan due to endo stage 4. My consultant has recommended HRT so will see how I get on.
Weird cocktail of emotions at present.

Kimberley x

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