ENDO Messages for January, 2007: Re: lupron user and very nervous

Re: lupron user and very nervous

From: anonymous@obgyn.net
Fri Jan 26 22:21:34 2007

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Ami,

Have you had your endo excised by a specialist? If not, I'd do that first. If you look at Dr. Redwine's site you'll learn that many women have had their ovaries removed and _still_ suffered from endo pain. It's old school thinking that menopause is a cure...Dr. R in Oregon's oldest patient was 70. If you want my list of endo specialists with websites and widely known reputations you can search back into past posts, or let me know and I'll repost it. Dr. C in CA works with patients who've had an avg. of four surgeries already and he seems to be able to achieve significant pain reduction for most of them. His office seems to do much more than just surgery including hormone tests and looking at Lyme's disease are the things I've heard about. I'm pretty sure you can send you records to him and get a phone consult for free, that is true of many of the nationally known specialists.

Have you ruled out other major causes of pelvic pain, like interstitial cystitis (IC)? This bladder condition is also hormonally mediated and can cause _severe_ pain...look it up if you haven't.

If you've already exhausted other possiable problems contributing to your pain and the specialists I encourage you to post here and post on the ERC's yahoo group and anywhere else you can think of and get women's stories of life after loosing their ovaries. I only know one woman who went this route, when she was still in her 20s, and, to say the least, I do not envy her. I do suppose though, that Lupron is a good trial run to see what live without ovaries might be like and to see if it helps. REally, though, we need estrogen for so many things, including memory!

The other place I've found real help has been naturopath who specializes in women's health.

Oh, and I should add. I had excision 4 months ago and got a lot of relief immediatly, but then the pain came back. A really thoughtful gyn told me it could be coming from nerve damage caused by being in pain for so long and put me on an anticonvulsant used to treat neuropathic pain (that has few side effects) called gabapentin. The relief is truely amazing. What I hear is that it doesn't always help, but when it helps it works like a charm. I don't know how many gyns know about treating neuropathic pain, you might need to find a pain specialist if you want to rule out this potential cause of your pain.

I wish you weren't suffering so much. I hope some of this helps you.

Jenn

At Fri, 26 Jan 2007, Ami wrote: >
>At Thu, 25 Jan 2007, anonymous@obgyn.net wrote:
>>
>>Here is an article about side effects, my warning is that it's very
>>negative. Most of my side effects hit horribly after the second (and
>>last!) shot. Have you had excision surgery? Tried everythingelse?
>>Search through the postings here...if you have any other option, I'd
>>suggest you try it and not take the second shot of Lupron. As for the
>>first week or two, it's a hormone surge, then estrogen drops off to very
>>little. My first two weeks I still had pain, but tons of energy, I
>>liked the energy, but I didn't feel like myself. After that I went
>>through hell and got weaker and weaker. My doc was using it as a
>>diagnosic, so I"m particularly mad...surgery would have been a far
>>easier recovery and I needed it anyway.
>>
>>http://www.associatedcontent.com/article/48852/what_your_doctor_doesnt_tell_you_aboutlupron.html
>>
>>Jenn
>>
>>At Thu, 25 Jan 2007, Ami wrote:
>>>
>>>Hello all i am on lupron now for a week and have been miserable all
>>>week. Can anybody tell me what they have had for side effects because
>>>the doctor isnt telling me anything. Thank you
>
>There is another option for me and that is to have my ovaries removed
>which i wanted when i had my partial hyst in november, but he advised
>against it. Now i am in the same boat i was in since day 1. pain pain
>and even more pain now since that damb shot. lol anyways i love all of
>your support on here thank you all so much.

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