2:40 pm - 01/17/2010

Vulvodynia

I was just diagnoised with this.  I've been suffereing for over a month now with intense itching and burning.  Had a complete work up, with culture, blood work, pap and biopsy.  Everything came back normal.  Doc. diagnoised me with vulvodynia.  Anyone else have this or familiar with it?
kuradi8 17th-Jan-2010 08:53 pm (UTC)
http://en.wikipedia.org/wiki/Vulvodynia says:
(also called "vestibulodynia") is a chronic pain syndrome [...] pain and other disorders of the female genital organs. It refers to pain of the vulva unexplained by vulvar or vaginal infection or skin disease.

In other words, they have no idea what's wrong.
pinkdramon 17th-Jan-2010 09:42 pm (UTC)
What sort of information are you looking for? A couple of members in this community have vulvodynia, including myself, so it's not entirely unheard of.

Were you looking for more information on what the diagnosis means or what sort of treatments are available? I'm very surprised that you would get a diagnosis of vulvodynia after 1 month of vulvovaginal discomfort - usually it's reserved for discomfort that's been around for 6 months or more. I've seen some sources say it can be diagnosed as early as 3 months though. There's a couple of different kinds of vulvodynia too, so treatment is going to vary depending on what you & your doc suspect.

At this time, I would suggest a second opinion.

You're describing burning & itching, where exactly in your vulva and/or vagina is this located? Deep inside, superficial, the labia, clitoris... or is it more widespread in the rest of your pelvis? Do you have any other chronic health problems?

A couple of at-home interventions you can try in the meantime are, avoiding irritants: switching your laundry detergent & soaps to non-irritating brands, and wearing breatheable cotton underwear, and switching menstrual products to non-irritating brands as well (Some brands have irritants in & on them. Look for gladrags or NatraCare products or a menstrual cup if you can handle penetration.)

For more information, some inexpensive books are The Vulvodynia survival guide and The V Book, but they're both a bit out of date now so you'll want to supplement those books with online research.
petulant2u 17th-Jan-2010 11:02 pm (UTC)
This is the second 'flare' up I had. The first one lasted a month. This time I'm over the one month period. I could not imagine going 3 months in ths kind of agnoy. I literally cannot leave my house.

Both times started with a yeast infection that cleared up but the symptoms, (intense constant itching day and night) never did. You know that 'yeast' itch? Nothing more intense than that imo. It was so severe I literally did not sleep for weeks, scatching continuously and did not leave my house. I went to the emergency room where they had no clue what was going on. They put me on steroids, shot me up with benedryl, and numbed the area with lindocane. Not one hour later I was up with the intnese itch. After many doctors, many tests, including biopsies, cultures and blood work (all negative), and many treatments, I ended up in the dermatologists office who said she thought it could be vulvodynia. She put me on clobestol steroid cream and neurontin and the symptoms went away with in a week.

Now, nine months later, same exact scenario. Yeast infection, cleared up, but symptoms didn't. This time the neurontin isn't working. They've upped me to 900mg at night and I'm starting to feel some relief, but still itching. They also had me on 3 weeks of predisone to clear up the rash I've also developed this time surrounding my vagina opening, my vulva nd down my thighs. They biopsied the rash, results not back yet. I've been using the clobestol for five weeks now to. Rash just starting to clear up.

I'm very well educated on vulvodynia, I'm not looking for information, just a kindred soul to talk to. I don't know anyone else with this condition. I seem to be the odd ball one who has the itching symptom, though I know it's probably has to do possible damage to my Pudendal Nerve. You see I've suffered most my life with chronic constipation. Years of excessive 'pushing' stretches the pundeal nerve. This probably resulted in Pudentdal Neuralgia (a form of vulvodynia) Most common symptom is itching. Though some sites don't mention it as a symptom, it is, some of the more reputable, more recent sites do. Like this one..

http://www.obgyn.net/women/women.asp?page=/CPP/articles/Cracchiolo_0499

I find it to be a good resource of information on vulvodynia in it's many forms, and other vulva conditions.

Anyway, you for respondng pinkrdramon! You're the first person I've actually communicated with that has this condition. It's nice to know I'm not alone.

pinkdramon 17th-Jan-2010 11:44 pm (UTC)
Okay, so the Neuronin is partly for the PN, so that might address the vulvodynia if it's related to PN.

I'm a little concerned the doctors gave you steroids for vulvodynia though. Generally speaking, steroids aren't a good idea when it comes to vulvar pain, except for maybe certain skin conditions like Lichens Sclerosus. LS can present with itching as well, so that might be worth looking into. The dermatologist should have been able to recognize that... the biopsy might catch it if it's there though...
Please be careful with the steroids. There's a risk that they can thin out the vulvar tissue & make it weaker over time. That said, you may not want to quit cold-turkey either, as that can risk a rebound effect too.

That said, when I was in the worst state with the vulvodynia, I had itching too. It may've been hormone related. I was on topical steroids for awhile too, early on, which may or may not have helped (I had some issues with tears that didn't heal on their own, which is partly why I was given steroids in the first place.)

Now since you said you wanted to talk to other folks with this condition, I would direct you to our very own VVS Community, and Yahoo! Vulvodynia and Vulvar Disorders. There's other support groups out there too online.
petulant2u 18th-Jan-2010 01:14 am (UTC)
The steroids were for a rash I developed on top of the itch. It was a bad one that ran down my thighs. It helped for that. I'm off the oral steriods, still using the clobestol for the rash which is almost gone. The oral predisone didn't clear it up completely.

Its funny you say you thought your itching may have been hormonally related. I believe this could be hormone related too as I'm 49, and always had hormone problems. I have PCOS and have been taking progesterone since my 20's. Though I had a hormonal profile done, and they said my hormones were within normal range, I do know that normal range is very large. so I could be on the low end of normal in estrogene, and on the high end of progesterone, and it's the ratio that counts. Dr. Christina Northrup wrote a great book called Womens body, womens wisdom that covers the hormone issue.
Thanks so much for those sites! I really could use some support from fellow sufferers.
petulant2u 18th-Jan-2010 02:17 am (UTC)
I'm sorry to bother you, but can I ask you how long were you using the topical steroid cream? I'm going on five weeks now. I think that's too long, especially since I'm seeing color change in my skin (around the vaginal opening is black) and the labia seems to be folding in. Yet, the itch is still present, though not as intense. I was using vagisil for 28 days straight, several times a day and had to stop cold turkey because doc said I could have serious side effects because vagisil is a benzocaine. I'm wondering if the color change is due to that.
pinkdramon 20th-Jan-2010 01:10 am (UTC)
You would really have to talk to your doctor about how long on steroids is too long. To give you an idea though, when I was on steroids, it was 2 weeks at 2x/day, then 2 weeks 1x/day, then once every other day for about a week. Then nothing.

There's other possibilities besides LS now that I thought about it... they might be worth looking into if it turns out not to be LS or to fit vulvodynia. There's also eczema and lichens planus. I don't know as much about them but they can be itchy too, as I understand.

With what the doctor said about vagisil - it's a numbing agent, right? My understanding is that, with numbing agents - specifically Lidocaine I'm more familiar with - if you use it over time it has a risk of permanently reducing nerve ending feeling.
The thing is - if you have certain pain conditions - that permanent numbness might be the lesser of two evils!
So yeah there's a risk. The risk with steroids is a little different since it can thin skin. But if you're applying it say, to the vestibule - sometimes doctors combine it with estrogen gel, because estrogen plumps up tissue & counteracts that thinning to some degree. You'd have to talk to a doc about it.
urban_faerie_ 17th-Jan-2010 11:05 pm (UTC)
I've had issues with vulvodynia in the past. my doc switched my pill dosage and gave me a vaginal estrogen creme to take. this seemed to do the trick for me.

I second everything other people said about avoiding irritants. I don't wear synthetic underwear. avoid tight fitting clothing and only use reusable menstrual products. that really helps too.

there are many things you can do to treat this. i found books like "surviving vulvodynia" and "the v book" helpful in just getting to know your condition and knowing you aren't alone.
petulant2u 18th-Jan-2010 01:08 am (UTC)
I've never used any products that weren't hypo allergeic. No perfumed soaps, or anything. Plain white dove soap and I only wear cotton underwear. I never use to have a problem with yeast infections. Maybe get one once a year, which isn't all that often. I am entering meno though, I'm 49. I'll check those books out, thanks. It's nice to talk to someone else who has this awful condition! The nerountin, at the higher does, seems to be working. I do think though that I need to take it during the day too as it wears out around mid day.
petulant2u 18th-Jan-2010 03:34 pm (UTC)
I've researched this condition to death! It's so frustrating. I really just wanted to talk to other women, like yourself, who suffer with the same type of vulvodynia. The God awful itch! And perhaps ask what works for you? If anything. I was prescribed Aatarax, (anti histamine) which worked opposite on me. Kept me up all night. OTC Benydryl (oral) works a bit, but knocks me out) I'm back on topical steroids, over 3 weeks now and it seems to be working, but VERY slowly. I also developed this rash down my thighs and on my mound. I'm thinking of using topical benedryl ointment. I was using vagisl 24/7 for a month but the doc made me stop telling me I was poising myself. Very dangerous stuff I'm told. Can cause serious side effects. Sometimes I put otc corticool on it, but it has this menthol feel to it that's not pleasant. Can I ask how long does your flare ups last and what do you do for the itching? You're right....It helps sooo much just to talk with someone who has this awful condition! Thanks
Gina
petulant2u 18th-Jan-2010 04:15 pm (UTC)
I actually think I might have LS. I'm waiting for the biospy report. That's a good idea, using the atarax during the day, since it keeps me up, and the benedryl at night...(if needed, the nerontin makes me sleep) But I do want to try the otc benedryl ointment for the itch.
Thanks for the guide lines. I'll check it out. Like you, I think my vulva does NOT like the liners I've been wearing. Even though they are hypo allegetic. My period is coming soon and I DREAD wearing panties and a pad. I've been wearing boxers around the house.
Thanks for your advice!
barrelofrain 19th-Jan-2010 03:30 am (UTC)
I've had pain and posted about it recently, but I don't know if I have an official diagnosis or not.

What I do know about is meds like neurontin because I've had chronic pain for 17 years.

Neurontin can be taken at higher doses than you're taking. If it's not working, you can ask to be upped.

If that doesn't work, though they're more expensive, you may have success with Lyrica, which is like a cousin of Neurontin, but works better for some people. Unfortunately, it's more expensive (doesn't have a generic) so I'm hoping you have insurance, with a prescription plan. If you do, your dr can write to your insurance company and tell them that the neurontin didn't work and that's why you need the more costly med, if they give you hassle. There's also Cymbalta, which is technically an antidepressant but works for nerve pain (I would assume that the newest one for fibromyalgia, Savella, does, too, since they all work somewhat similarly, though you may want to try Lyrica first since the Neurontin helped and it's the closest relative.)

Um, and, I'm not a doctor, and all that stuff. But I do hope you find relief soon.
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