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Confused about estrogen and endo Confused about estrogen and endo

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Unread 12-27-2001, 02:54 PM
Confused about estrogen and endo

I had a Tah/bso about three weeks ago. I had no idea I had endo until two days before my surgery when I couldn't walk. The ultrasound showed huge masses on both ovaries so I went to an oncologist/gynocologist who suspected cancer. He did the surgery and luckily it was endo growths on my ovaries and not cancerous. However, apparently I had a pretty severe case of endo. Before I left the hospital I was put on an Estrogen patch. Today at my checkup I told him I was still having problems and he switched me to a higher dose of estrogen in a pill format. I questioned the use of estrogen considering the endo and what I have read and he said that because my uterus was removed I wouldn't have a problem and that those studies were mostly conducted by 'old school doctors'. He is the head of the oncology/gynocological at a large hospital so I would like to think he knows what he is talking about. Has anyone else with endo been put immediately on estrogen ?
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Unread 12-27-2001, 03:43 PM
Confused about estrogen and endo

I had endo but it seemed to be just on the outside of my uterus. Did you have any other endo in your pelvic area? Was it removed at the time of surgery? If you do not already have it I would ask for a copy of your surgical and pathology report. I would consider finding a doctor specifically for your hrt. One thing that most women with endo do get is some progesterone with the estrogen. In fact most women feel best while using progesterone with their estrogen.
If you want to find a doctor who is knowledgable about hormones I would suggest finding a compounding pharmacist first A compounding pharmacist is skilled at making made to order hormone preparations for women and will know the doctors in your area that are experts in prescribing them. If you discuss with the compounding pharmacist your exact situation with the endo he might steer you to a dr with some experience. Make sure you find a compounding pharmacist who seems to know what he is talking about. Call as many as you can so that you can get a feel from what each one is like. The compounding pharmacist will then be part of your health care team.
best wishes

Becky in OHIO
Unread 12-27-2001, 05:09 PM
Confused about estrogen and endo

I had stage iv endo. My surgeon was somewhat of an expert on endo. He started me on provera right away (While provera is not a very nice progestin, it does have the added benefit of not raising your estradiol levels. I did not do very well on it, however.) He wanted me to hold off on estrogen as long as possible. I lasted one week and the hot flashes became so severe, I started on estrace. I've been fine so far.
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Unread 12-27-2001, 08:42 PM
Confused about estrogen and endo

I had severe endo and after my surgery I was without hormones for about 3 months. Could not wait to get them, though.
Unread 12-28-2001, 07:20 AM

Thought I'd stop in and see if I could clear this up for ya:

Basically, there is no agreement among professionals (doctors) as to how estrogen affects endometriosis. Some believe that it "causes it to grow" others believe endo creates it's own form of hormones all by itself (without the help of the normal endocrine system). None of these studies are conclusive. The jury's still out. However, if you have endometriosis implants OUTSIDE the uterus (in the pelvic cavity, on your ovaries, on your bladder, on the peritoneum, on your colon) estrogen WILL cause hyperplasia (overgrowth of endometriosis implants) if it is not balanced with progesterone - In SOME cases. Doctors have no way of knowing which cases (people) that will happen to, but it IS deadly.

If this doctor is 100% sure he removed ALL of the endometriosis implants (which I don't know how he'd know that) along with your uterus/ovaries, then he may be right. However, if he is NOT an expert in removing endometriosis implants and identifying them - you run the risk of hyperplasia and overstimulation of endometriosis implants.

This is what I know: Removing healthy organs (your uterus/ovaries) does not CURE endometriosis. It sometimes puts the disease into remission, but does not cure it. And only puts it into remission if you find the proper balance of hrt.

There are many women on the "Road Less Traveled" who still have endo after tah/bso...some even without hrt.

Remember - not alot of research has been completed on endometriosis - it's an old disease that is misunderstood, largely, by the "professionals" (doctors). There are very few endometriosis experts in the US (4 that I know of) and even they disagree as to how it operates, but they do agree on how to treat it (removal of all the endometriosis implants - not the organs). There is some dissention as to HOW to do that among them, but there is research being conducted right now. Bottom line is: answers are a long way off. Listen to YOUR body and do the research on Endo, and figure out what's right for YOU. Only you will have to live with it (not the docs) and only you will have to put up with the side affects (not the docs).

Good luck....

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