Anyone with VVS or Vulvodynia along with IC?

Interstitial Cystitis
#1

Hi Ladies!

Do any of you suffer from Vulvar Vestibulitis for Vulvodynia (or anything similar to these conditions) too?

I was diagnosed (after almost a year of misdiagnoses and other crap) with Vulvar Vestibulitis in April 2006. I had a partial vestibulectomy in July 2006 and then a partial perineoplasty in July 2007. ‘sigh’

I was diagnosed in May 2007 with IC but I’m sure I’ve had it since I was a child. It wasn’t until I was diagnosed with VV that I learned, by accident online, what the heck IC was! I was SO HAPPY to know there was a NAME for what I’ve been suffering from for as long as I can remember!! I had to track down a urologist on my own since of course a ‘regular’ doctor didn’t know what was wrong with me (as was the case with VV; it took almost a year of other doctors before I finally searched out a Vulvar Specialist here in Portland Oregon - thank God there was one!). I always thought my IC (back then I called it “my problem”, seriously that was my name for it!) was just some quirky thing I had to live with; that’s kinda what doctors told me through the years. One doctor about 10 years ago said my urethra was slightly tipped toward my vagina which was probably causing the problem…they were too close together. Um ok???

Anyway, that’s a brief synopsis of me…for now…til I can write more…I’m at work right now!!

:slight_smile:
Thanks for “listening”!

Julie P
Portland, Oregon

#2

Hi Julie

I actually suffer from both conditions as well. I actually developed VVS first, which was incorrectly treated as a yeast infection for months and months. Once I found a doctor who diagnosed it (here in DC) I went through several different kinds of treatment for it–various topical creams, steroids, interferon injects–I found a doctor up in Philadelphia who was doing a more experimental treatment with capsaicin. Capsaicin is a chili pepper extract, and you basically apply it to the vulva for 20 minutes every night for 3 months, then taper down to once a week, and continue on with a maintenance program. Yeah, it burns like heck for those 20 minutes, but the rest of the time I noticed a big improvement. I was even starting to wear jeans again and was considering trying intercourse!
But, on a follow up check up to that same doctor, she told me that I had a very mild case of urethritis. Basically, when she pushed up from the vaginal opening, it made me feel like I had to pee. So she gave me some kind of anticholinergenic cream to put around the urethral opening (keep in mind, this had never really bothered me before and I had never really even noticed it). That night, after my capsaicin treatment, I applied the cream and immediately felt burning and a need to urinate. Long story short, I quickly developed full-blown IC, knowing exactly what it was and what was happening all along and yet being unable to stop it. The inflammation continued and I had to stop the capsaicin treatment because the burning from it made all of my urinary symptoms ten times worse. So the VVS came back and now I have both. I now see a urologist who has put me on amytriptaline (Elavil), Sanctura, Elmiron, topical lidocaine, and Prosed when needed, and all of these do a decent job of keeping my symptoms bearable. The urologist seems to think that the VVS was simply an expression of developing IC.
I have never had urinary symptoms before in my life. It sounds like most people with IC have been symptomatic for a long time and suffered from many actual or misdiagnosed UTIs before stumbling upon their true diagnosis. I have, however, read a few cases who, like me, appear to have one noxious event that triggered the IC. I’ve also heard that up to 25% of women with IC also have VVS, but usually it’s the IC symptoms that come first, and then the vulvar symptoms. Oh dear, what a lovely way to be unique!

I’m also at work and I gotta get back, but it’s nice to see someone with similar issues. Well, not nice for you… :frowning:

Best of luck in your journey to recovery!

Darcy

#3

Darcy! Thanks sooo much for writing back! Especially during your workday, like me. :slight_smile:

WOW, what an ordeal you’ve been through…how insane.

So you are all the way in DC! It’s amazing how many women are suffering thru the same crap, all over the country. I’ve met a few women in England an Australia through Yahoo groups that have VVS and/or IC. It’s terrible that so many of us have this, yet it’s comforting to feel less and less “alone” and “weird”.

Hope you have a great weekend, especially physically and emotionally! Talk to you soon! I will write more over the weekend to my profile and to this group.

:slight_smile:
Julie