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Major Surgery 7 years post hysterectomy...... Major Surgery 7 years post hysterectomy......

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  #1  
Unread 05-22-2003, 07:03 PM
Major Surgery 7 years post hysterectomy......

I had a complete hysterectomy (including ovaries) in 1996. I had much endometriosis and adenomyosis. Now, I have a recurrence of endo in the pelvis and on the vaginal cuff. I'm taking ERT and am debilitated without it. Have others had a recurrence of endo and, if so, what was done about it?? My surgery is scheduled for May 29th. Thanks.
gg
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  #2  
Unread 05-22-2003, 08:34 PM
Major Surgery 7 years post hysterectomy......

I am soooo sorry that you are having problems so far out from your hyst... How did they diagnose your recurring endo?

I just had a lap 3 weeks ago and before he went in he thought it was recurring enod, when in fact is was severe adhesions. My omentum was adhered to my vaginal cul-de-sac and my bowel adhered to that. I will tell you that it felt just like the endo pain I had before my hyst. I am still cramping and pray it is just healing, but you never know, he told me I had a good chance of it all adhering again..

Good luck with your surgery and other endo sisters will be by soon!!! I will keep you in my prayers!!

HUGS
  #3  
Unread 05-22-2003, 09:10 PM
Major surgery 7 years after hysterectomy

Hi Pam: I had light bleeding in Dec. 2001. She did a biospy and found endometriosis. I had it removed vaginally in 2002, but it recurred. That's why I'm having abdominal surgery now.
gg
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  #4  
Unread 05-23-2003, 06:41 AM
Major Surgery 7 years post hysterectomy......

Hi again gg,

I was just wondering if you started ERT right after your hyst or if you waited a while? I know that estrogen feeds endo that is left behind and alot of women benefit from holding off for a few months to starve the remeining endo. Even if they say they remove all of the enod, there can still be either endo cells or unseen endo still remaining.

My Gyn told me that if it was recurring endo that he would go in and cut it all out as well as laser some. There are alot of women on this board going through the same situation and I know that they can give you their experiences.

We are all here to help in any way we can!!
  #5  
Unread 05-23-2003, 06:59 AM
Major Surgery 7 years post hysterectomy......

Pam: I waited 5 weeks after surgery to start ERT. By that time I was debilitated from nausea, dizziness, sores in my mouth, etc. from lack of estrogen. Part of the problem, I think, was that my doctor did not remove endo during surgery. I think she just left it there to "die" from lack of estrogen. Thanks for your respones.
Gail
  #6  
Unread 05-23-2003, 11:58 AM
Major Surgery 7 years post hysterectomy......

Gail:

Have you asked your doctor about using some progesterone (compounded or Prometrium) to "oppose" your estrogen use, both now and after your surgery?

I understand your desire to stay with the estrogen that your body seems to so badly need (and, BTW, what form is it...that could make a difference). But most of the literature seems to point toward using progesterone sources to help balance out the estrogen use.

Also, endo is biochemically active, and interferes with the conversion of estradiol to estrone. I know I'm considering adding some estriol in with my estradiol patch (Vivelle) to see if that helps things any. It would be worth the while, I think, to discuss things with a compounding pharmacist like Pete Heuseman to evaluate your post-op options in an effort to ease your symptoms without returning the endo.

Good luck with this surgery, and do discuss with your doctor any methods that are planned for dealing with possible adhesions -- for example, my doctor took care to keep the surgical field well-irrigated throughout the surgery so tissues stayed moist and healthy. My surgery was originally done by a GYN-oncologist due to possible ovarian cancer...but if I need follow-up surgery (and it's looking more likely for me all the time) I would return to the oncologists. They have the surgical expertise and privileges to do whatever surgery is necessary to remove endo wherever they find it, whether it be on the intestine, omentum, or uterers/bladder. Endo surgery can be tricky, and the oncologists have the most experience and expertise to maximize your benefits from a repeat laparotomy.

Good luck to you, and I hope you find relief with this go-round!

Audrey
  #7  
Unread 05-24-2003, 08:33 PM
Major Surgery 7 years post hysterectomy......

Audrey: I have read some literature that recommends progesterone with estrogen for endo sufferers. I was on birth control pills twice and had side effects from the progesterone (ie. acne, headaches, sore, swollen breats). Do you think using a 2% progesterone cream might decrease side effects and help inhibit endo growth? Thanks in advance.
gg
  #8  
Unread 05-26-2003, 11:17 PM
All "progesterone" is NOT created equal!

First of all, gg, I'm sorry I didn't see this sooner!

The "progesterone" in BCPs isn't the same progesterone molecule that your body used to make prior to the surgery. For many women, there can be undesirable side effects from BCPs -- but that may not in any way resemble their experience POST hysterectomy. And what you're trying to do here is to balance the estrogen source you're already taking (what form is that, BTW? It, too, could make a difference).

What progesterone does, in our bodies, is to inhibit the endometrial growth in the uterus. When you have endo, of course, you have these implants of abnormal endometrial tissue outside of the uterus...and progesterone may well inhibit their growth. OTOH, "unopposed" estrogen could be fueling the growth of those cells.

I'm convinced that good surgery DOES also make a difference. May this surgery be your last, and may you heal pain-free!



Audrey
  #9  
Unread 05-27-2003, 06:07 AM
Major Surgery 7 years post hysterectomy......

Hi Audry: I'm taking the Vivelle Dot patch, which makes me feel very well. What progesterone would you recommend that would not have the side effects of acne, headache, breast tenderness, etc?? Thanks for your help.
gg
  #10  
Unread 05-27-2003, 09:36 AM
Major Surgery 7 years post hysterectomy......

Well, you can ask your doctor: there are only a couple of bio-identical choices. The compounding pharmacy can make up creams or time-release capsules; and there's also a brand-name product called Prometrium, which is what I take. It is NOT however, for those allergic to peanuts, as the base is peanut oil .

I can't guarantee that you WON'T have these side effects, just that it will help balance the estrogen's effects on any residual endo after this next surgery. I love my Dot, too, and take a pretty low dose (.0375) -- but do take the Prometrium with it.

Since you're not taking the type of estrogen that was contained in the BCPs, you may find that you have a much different experience with the combination of the Vivelle (bio-identical estradiol) and some sort of bio-identical progesterone. It's sort of like saying that chicken curry with potatoes and chicken stew with dumplings are the same thing -- sure, they both have chicken and starch in them -- but the "recipes" couldn't be more different.

The estrogens and progestins in BCPs are very different than what you'd be taking now. And hopefully the addition of Prometrium or some other progesterone source will help keep that dreaded endo from ever bothering you again!

Good luck with this upcoming surgery. I do hope they are expecting to take any and all precautions necessary to "get" everything and keep adhesion formation down. And remember your training -- taking good care of yourself in those first six weeks (or more) will go a long way to an eventual full recovery and hopefully a pain-free future!



Audrey
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