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endo return - need some advice endo return - need some advice

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Unread 10-08-2003, 03:33 PM
endo return - need some advice

Almost one year post op I'm fairly sure the endo is back. I don't think my doctor believes me, but he said the options are no estrogen or surgery. The pain is not too bad yet, but it's there and constant. I also can't face life without estrogen, I've tried, and I experience depression, anxiety, sleeplessness, headaches, and am generally miserable. Does anyone know if the endo will diminish if I slowly just cut down on the estrogen? I take 200mg of compounded progesterone orally at night and I know that can sometimes counter the effects of the estrogen.
I'm just hoping to hear from anyone else who has dealt with this endo misery.
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Unread 10-09-2003, 12:49 PM
endo return - need some advice

Dear Linsue,

I can totally relate to your not doing well without estrogen. I did terribly on Lupron when I took it for my endo and since then it has made me so worried about having my remaining ovary removed... and how I would do on HRT.

I had my TAH last August (14 months ago). At the time the surgeon could not see any endo (but I had been pregnant and nursing the preceding 18 months so who knows?!!). I only have my left ovary remaining. I had one area of my pain remaining/continuing after the hyst on my right .. as the months have gone by the pain has increased and now includes spots on the left. I am on the BCPs continously. I do not know if I still have endo problems or not. I have tried many things to relieve the pain but I continue to trend towards it getting progressively worse.

I do have a friend who had severe endo. SHe had a TAH-BSO and then went on ERT. Her pain returned after about 4 months. Every doctor told her it was not possible for the endo to return. 18 months after her TAH, she had surgery again and the doctor found a bunch of endo and adhesions. She decided to go completely of ERT for a while and then get back on a low dose later. It has worked for her.... she is now feeling much better although she still has some pain which is probably from scarring and adhesions.

Let us know what you decide to try. I hope you find relief. Endo can be a hard thing to beat.


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