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One question might be, if your ovaries are removed, and you have no menopausal symptoms, do you still have non-menopausal blood levels of estradiol. Typically a menopausal blood estradiol would be less than 20-30 picograms. As you likely have read, the body can convert other hormones (eg androgens) into weak estrogens. Once ovaries are gone the principal source of androgens are the adrenal glands. Given that you are under the care of a GYN oncologist, I would bet that they have ruled an estrogen or androgen secreting tumor.
I could not find any randomized trials of Lupron for ovarian remnant syndrome, but Lupron has been shown to be very effective in suppression of endometriosis in any body site. It sounds like your MD is also trying to avoid another surgery by trying a hormonal suppression approach. As you know, if a woman had improved pelvic pain with Lupron, that can help confirm endometriosis as the culprit.
It is dreadful that you have had to endure so much at such a young age--and with two young children to care for. My advice would be to consider your MD's suggestion as a trial for the pain. You can always bail after the initial injection. Hopefully the mass will shrink and the pain abate.
If you elect to try the Lupron, would you be willing to send us an update on your decision and condition? Because of the rarity of your case, another woman with a similar issue may be able to benefit from your experience and insights.
In Support,
Jane
The pelvic mass is secreting hormone. It is as if the mass goes through cycles like a functioning ovary. I have had to take altering hormone levels determined on side effects that my body has telling me that I have either too much or too little based on the cycles this mass and the previous have produced. After being off hormones completely for 5 days, I started having mild hot flashes and night sweats. As I predicted, the mass seems to have decreased in fullness compared to just a week ago according to yesterdays examination.
I started the Lupron injection yesterday. I want to convince my doctor to do a study on this because of it being so rare. So far, the only side effect I am having is a headache that is affecting my eyes (feels like eye strain). I am hopeful that this will work.
Thanks,
Jennifer-32Jennh
Yours,
Jane
Please continue this conversation since you are 7 months further than me.
I have a very similar story to you. I have had 10 surgeries each time being told it was the last one. The most recent surgery determined my ovaries (bilaterally) had returned after being removed 7 years prior. I have also had functioning hormone levels through the past 11 years of this experience. I am on my second round of Depot Lupron and I am not seeing much progress. I too have a gyno oncologist as well as a team at Mayo. Although i am told how rare this is and how my case is more complicated than most, I still feel very in the dark.
My depo experience has been a roller coaster. The hot flashes are frequent and I did not have a good experience on the Add back therapy. I had severe mood swings including rage and irrational thoughts and severe headaches.
I feel I have no other choice but to stay on the Lupron for 6 months. I have no seen any documented cases in accordance with ovarian remnant sydrome and would love some reassurance.
I would wonder if you too had endometriosis (which increases the risk for ovarian remnant syndrome). Hopefully some other source of the hormones (eg adrenal tumor) was ruled out.
Yes, Depo-Lupron can be difficult to endure with its myriad of unpleasant side effects. I'm really sorry that add back therapy did not help with such side effects. [Note to other readers: Add back therapy means giving the woman small does of estrogen and progesterone (about 1/5 dose found in a low dose birth control pill) after all of her own estrogen and progesterone have been completely suppressed by the Lupron.>
I did another lit search at the National Library of Medicine site but it yielded no reports of long term Lupron treatment for ovarian remnants.Another search of popular sources found this discussion at hystersisters on ovarian remnant syndrome:
http://www.hystersisters.com/vb2/showthread.php?t=381678
Even if 32jenn does not write back, please consider letting us know about your outcome. This post and thread comes up as number 3 in a Google search so you know other women will see and appreciate your input.
In Gratitude,
Jane
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