Nerve pain - pelvic spasms

[Guest guest]

Hi Everyone.....

I've been off the board for quite some time, not because I found a solution, but because I simply gave up for awhile. I was living in NY and seeing Dr. Ledger when I last wrote, who did genetic testing and told me I had both gene polymorphisms. He suggested a list of anti-inflammatory solutions - none of which were right for me and after trying all kinds of steroid treatments (all of which caused more pain), I needed to take a break.

Since then I've moved back to Michigan and today I saw the doctor I started with ten years ago - Dr. Sobel. Dr. Sobel was quite upset that I was put through all these tests and painful treatments in NY -- he felt that it was fine to do research with such things - but not to subject patients to them - particularly since there are no solutions. All it does is scare the patient - which, of course, it did. When I told him the drugs that were suggested, he said he was very glad I turned them all down - because there are risks involved.......

But beyond all that, this is what he thinks now. He said I have no signs of vaginitis at all - that I've never shown any signs and he did an exam today that went beyond your regular vaginal and pelvic exam. As he poked around, he touched a spot on my lower back that almost made me jump off the table. He immediately said that's your sacral nerve. Others have touched there before (including a neurologist) and been baffled by my reaction. After more poking around - including a pelvic exam - he said what I have is neuro-muscular. That I have acute nerve pain and pelvic spasms. I'm sure I've read about this before here - but now I really need to understand it. Is this the whole "pelvic floor" thing others have mentioned here? He mentioned physical therapy and the whole dialator thing has me a little freaked out - given the pain I have with intercourse.

He is referring me to someone to be evaluated and after he gets her report, he's going to decide if I need some sort of drug to calm the nerve pain. I asked him what kind and he said he wanted to think about it and look at what else I'd tried. Are those the antidepressants I've read about? I don't do well on any sort of antidepressants.

He also said, for any of you that are in Michigan, that this is Hope Haefner's specialty. Have any of you been treated for this with her? I know she's got a 6 month waiting list.

Any guidance you can give me is so appreciated. I don't know why it took 10 years to get to this (or even if it's the right diagnosis), but I don't think I have much choice, other than to be evaluated.

BTW, I still react (itching, vaginal swelling) to any starchy carbs. I don't know how they can be related. Any one have a clue or could it be that I've got two things going on?

J

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