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Old 08-15-2012, 11:28 AM   #1
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Vulval vestibulitis

I am quite sure I am dealing with vestibulitis even though my doctor refuses to acknowledge that this condition exists.

I also have Fibromyalgia and am just wondering if anyone here also has vestibulitis and what your symptoms feel like? I'm at a loss.

 
Old 08-15-2012, 12:34 PM   #2
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Re: Vulval vestibulitis

There's a high degree of comorbidity between fibro and VV. I've got both, though luckily things aren't as bad as they used to be.

My main symptom is pain with intercourse, but I had a very hard time getting diagnosed. Every year I'd tell the gynecologist, and every year I'd get blown off. Finally I put my foot down and insisted it wasn't right, and she referred me to a vulvar specialist. (Of course, she didn't know any, so I had to find one myself!)

Things that may have helped:

1) Absolutely no chemicals, ever. Washing with plain water, wearing only plain white cotton underwear, laundered in hot water with hypoallergenic detergent, no bleach.

2) Any bouts of yeast I treated with Diflucan, not local treatments, as they can be irritating.

3) No nonoxynol-9, ever. Check the labels on the nightstand.

4) Quitting BC.

I still have some issues, but it's mild enough I usually just ignore it.

 
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Old 08-15-2012, 01:06 PM   #3
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Re: Vulval vestibulitis

Thanks for your response Jane

As per the things you have suggested...I always wash our clothing with hypoallergenic detergent. Always have worn cotton underwear. In the shower I use Ivory soap. I have sensitive skin to begin with so chemicals are definitely a no no. As for condoms....we don't use them. I have a minor latex allergy (externally) that is a million times worse when using condoms. I'm in a very long term monogamous relationship. Unfortunately I can't quit my BC. Without it the pain I get during that time of the month leaves me bed ridden for days. I wonder though if switching the pill I use could make a difference?

My symptoms flared up after a horrid UTI I had in May. I tend to get one UTI a year ever since my fibro diagnosis in 2006. My body is just insanely sensitive to bacteria. I was given Macrobid for the UTI. A couple weeks later I got a yeast infection from the antibiotics. Canesten cleared that up. A few days later though I had vaginal/vulva burning. This has been going on ever since.

Some days the burning is just mild. Some days it feels like I've been lit on fire. Sometimes it will completely disappear for a few days but always returns. My dr has checked me for all infections, they're all negative. I went to see her yesterday and she blew me off. Didn't even examine me which was alarming because I told her that I can clearly see the skin at the base of my vagina (externally) is red and irritated. I'm positive that is where the burning originates and then refers pain into other areas.

She is still insisting that my bladder is the problem and doesn't seem to care that VV can cause burning on urination and frequent urination even without infection. She seemed to be quite offended that I have taken the time to do my research. I don't fit the criteria for cystitis. VV fits me perfectly. The only thing I don't have is pain with sex or tampon use (thank the powers that be! haha!)

My doc has me taking Macrobid after sex and Diflucan once a week for the next 3 months. She also gave me triacomb ointment. On top of this I take 150mg of amitriptyline for the fibro as well as probiotic capsules and cranberry capsules.

I have read that the Macrobid, Diflucan and triacomb combination has helped some people with VV. What bothers me is that my doctor gave me this plan insisting that it's my bladder when it's quite obvious it's not. I'm trying my best to give this plan a try and also did some research for a great gyno in my area should I need to see one.

Any other comments are welcome!

 
Old 08-19-2012, 04:37 AM   #4
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Re: Vulval vestibulitis

Being male I don’t have quite the same symptoms but I think I have the same problem. Google Pelvic floor muscle dysfunctions and Dr. David Wise or the Wise Anderson protocol. At Stanford medical school they found that 95% of patients treated for all the conditions you list were actually muscle spasms in the pelvic floor muscle irritating all the nerves in the region – UTI’s pelvic pain – vulvadynia (sp) and in my case rectal and penile pain....severe. I was scoped –scanned and treated with a whole pharmacy. I am a medical professional and I did some research and discovered the real problem and cured myself before I found Dr. Wise – well years before he discovered the problem.

This is a common problem for people with anxiety – fibro and stress and drugs wont cure it.

 
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