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Endometriosis found during hyst - need to go off estrogen? Endometriosis found during hyst - need to go off estrogen?

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Unread 08-23-2011, 08:02 PM
Endometriosis found during hyst - need to go off estrogen?

Hi there, I had my laparoscopic supracervical hysterectomy one week ago on 8/16 also had stage 2 of my mastectomy and had that done at the same time as my hyst as I am BRCA1+ with a strong family history of both breast and ovarian cancer. I did things in this order so I could have hormone replacement after this surgery - I am 35 years old.

However the GYN told me during the surgery he found a lot of endometriosis on the back of my uterus and attached to my ureter and while he was able to remove the ovaries, tubes and uterus with most of the endometriosis there is still some attached to the uterer that he was not able to get for fear of nicking in. He is telling me that I will need to go off of estrogen for 3-6 months in order to get rid of this and there there is possibily a high dose injectible progesterone that can help my symptoms in the interim. I am currently on the Vivelle dot at 0.1 mg until I see me local GYN in a week--I'm sure I can get more info from her but I'm wondering if the people in this community have any insight or advice for me. I was hoping to do bioidenticals only and that after this surgery things would finally get easier and I could just focus on healing. Now it feels like there is another thing I need to worry about.

I had my first hot flash last night (seering heat behind my eyeballs that spread to my inner ears and down my face to my body) luckily I was home alone and able to rip my clothes off but this doesn't bode well for driving/work. Any advice? Thanks in advance for your replies.
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Unread 08-26-2011, 09:41 AM
Re: Endometriosis found during hyst - need to go off estrogen?

I am sorry you have had to face so many surgeries so young and now endometriosis has been thrown into the mix.

First, you do need to know that there is a lot of confusing and conflicting information out there about endometriosis. So don't be surprised if two different doctors give you two different sets of information.

There are doctors that do believe that no estrogen = no endometriosis. They fully believe that by removing the ovaries and withholding estrogen any remaining endometriosis with "die off". However, there are a couple problems with that theory. One, endometriosis can create its own supply of estrogen and be quite self sustaining! Fat cells can also produce and store a type of estrogen. Additionally, there are dietary means of providing estrogen to the body. So, it can actually be very difficult to be estrogen free even for a space of time.

Progesterone can sometimes cause endometriosis to shrink and it isn't uncommon for women with endometriosis both pre and post hysterectomy to use progesterone to try to stay on top of the condition. Some doctors will only allow their patients with endometriosis to use ERT if they also use progesterone. However, it is not 100% effective and may not actually cause the endometriosis to "die off" but rather cause more of a remission type response. The endometriosis could plumb back up once estrogen has been introduced.

So it a nutshell, avoiding ERT for a time and using progesterone treatment might help and could be worth a try. But neither is a guarantee that you will become endometriosis free. Neither a hysterectomy or oophorectomy are cures for this condition. The key is the skillful excision of all of endometriosis, something not many doctors are able to do as you just found out, especially when endometriosis was unexpected and involving areas such as the ureters.

I thinking talking to your local GYN is a good idea. Between the two doctors, hopefully you all can decide on the right plan for you.

We do have an Endometriosis Support forum where you can learn more about this condition. You may also want to consider consulting with a doctor who specializes in treating endometriosis.

in there!

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