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Old 12-06-2005, 08:31 PM   #1
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rose_red187 HB User
Unhappy Vulvodynia

I was FINALLY diagnosed with vulvodynia. I capitalize it because for the past 7 years I was always told that the pain and itching and just miserable feeling I have in the vulvular region is really in my head. I did my research and learned the right question to ask the doc. First question being," HOW MANY PT'S HAVE YOU DELT WITH that have this disorder?" I'm glad to know now that I'm not alone! I am told that there is NO cure. Maybe if the docs were wrong about WHERE my pain was..maybe they are wrong about a cure??? Hopefully awaiting reply. Anything would be better than what they are suggesting! (complete radical vulvectomy)

Last edited by rose_red187; 12-06-2005 at 08:42 PM.

 
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Old 12-07-2005, 10:15 AM   #2
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Re: Vulvodynia

wow -- Rose! 7 years is a long time -- good for you for hanging in there!

Now that you have an answer -- you can do some general searches for a couple of things. Search "vulvodynia", and search on any drugs that have been prescribed, too.

You can do a general google or yahoo search, or you can use some of the major websites listed on [url]www.diagKNOWsis.org[/url] -- there are links to dozens of them there.

A couple of guidelines -- make sure if you do a general search that the information is not sponsored by one specific doctor, or one specific drug -- that kind of information is suspect.

Also -- look for variations of your specific diagnosis. There might be others that have similar symptoms, and just because you finally have one answer doesn't mean it's the right one!

In my own case, I was diagnosed with cancer, and then figured out that what I really had wasn't cancer at all, but it was VERY close in nature. In the case of the cancer, I was supposed to be dead within months. Well -- that was more than a year ago, and I am just fine -- and never had treatment. Maybe you'll be able to find out that what you have is treatable afterall.

Good luck. I hope your research turns up lots of treatable possibilities for you.

 
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Old 12-12-2005, 06:20 PM   #3
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User
Re: Vulvodynia

Hi Rose: I have Vulvodynia also and have had to do my own research on the internet and through books on the subject. My problem is that I can't find a Dr. who will treat it. No general Gyn. in my area will see a Vulvodynia patient and there's only one "specialist". I can't stand him, so I don't have any choice of who to see. I don't know what I'll do when it's time for my annual Gyn. exam and pap in 2006.

Surgery should be a last resort where Vulvodynia is concerned. I use Estrace cream, Emu Oil, Aveeno baths and a steroid ointment 2X a week b/c I also have Lichen Sclerosis and that's the treatment for it. I don't particularly want to take low dose anti-depressants like some Vulvodynia patients do. Physical therapy and/or biofeedback is another option for treatment. I hope you find something to help. Sue

 
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