9:26 am - 04/15/2012

Red and burning vulva... what could this be?

I'll try to make this long story as short as possible. Putting it behind a cut so I don't take up your entire homepage. :-)

A year ago I was diagnosed with my first yeast infection. I took diflucan and monistat, and my symptoms went away after about a week. But the infection kept coming back every other month, and subsequent bouts would last for a month at a time. In November 2011, I had what I thought were YI symptoms; my vulva was red and burning, but there wasn't discharge. I went to a doctor who said it was no longer a YI, but now was just contact dermatitis. She prescribed a steroid cream Triamcinolone Ecetonide Cream (0.1%), and after a couple weeks I was finally cured.

About a month ago, the symptoms came back with a vengeance. Very red vulva with a burning/irritating pain, and some days at work it's hard to sit for so many hours. There are no bumps, no rash, and no cracked skin, it's just general redness on the entire vulva. I went to a Gyno who also thought I had contact dermatitis (the vagina itself is pain-free and not irritated, and there's no discharge), and again prescribed the Triamcinolone cream. That did nothing, so I went back to a different Gyno. I asked about vulvodynia, but she was confident that it wasn't that, as I didn't have pain on contact, and she said that vulvodynia sufferers don't usually have visible symptoms like I do. She prescribed a stronger steroid cream, Clobetasol Propionate Ointment (0.05%). I already use that for eczema flare-ups on my elbows, so I was confident it would work. But after a week, the symptoms got even worse. My vulva was red to the point where it was almost this harsh purple color. I called the Gyno and she said to stop using the Ointment, and instead take a salt bath twice a day and use Vaseline until her next opening on Thursday.

So here I am, scared that my hoo ha will be burning and red for the rest of my life. The Vaseline is somewhat soothing, but what really helps is hanging out in my apartment without pants or underwear on, airing it out next to an open window on the couch with my butt almost literally in the air (which my husband thinks is kind of hysterical). Last night, doing this for a few hours while watching TV really helped (the redness went down quite a bit), but this morning I woke up and it was right back to it's "normal" red/irritated self. Hmph.

Has anyone ever experienced anything similar? Some other things about myself to note:
- I'm 25, married, and have been with my husband for 6 years. He's very understanding, and we've avoided sex for a few weeks just in case, but sex itself isn't too painful and doesn't really make this worse.
- Have been tested for every STD in the book, all negative.
- I've been exercising a lot recently; we're going on a tropical vacation in a month so I wanted to lose 6 pounds (and reached my goal weight yesterday, woohoo!). I thought it might be the exercise & sweat causing these symptoms, but I stopped exercising for a week and the symptoms didn't go away.
- My skin is generally very sensitive so the contact dermatitis diagnosis made sense to me, but the fact that no medicine is working is really unsettling. I also don't heal very well (I've had unrelated surgery before, with very slow recoveries), so the option of having a biopsy down there is pretty much out of the question.

If anyone has any ideas for what this could be, I'd love to hear it. The amount of times I've heard "I don't know" from doctors over the past year is just weird; I can't be the only one who's been through this.
dammit_morgan 15th-Apr-2012 01:54 pm (UTC)
Your doctor was mistaken, I have vulvodynia and I can be touched without pain. There are different types of vulvodynia. There have been ladies in my forum who do have "visible" symptoms, redness is a big one, cracked or torn vulva. Doctors really don't know much about this condition and sadly its us who have the condition who get together to figure things out. Just saying, vulvodynia shouldn't be ruled out especially if results keep coming back negative, classic note in all V patients.
brs18041 15th-Apr-2012 02:29 pm (UTC)
Right, that's what I've read online. I mentioned that to the Gyno on my last visit, and asked if there are ever patients that have redness with vulvodynia, and she shook her head and said "nope, there's no chance it's vulvodynia." I'm seeing a different, more experienced Gyno this Thursday. I mean, I'm hoping it's NOT vulvodynia since that could take years to go away, if ever, but I thought it was weird how she immediately ruled it out.
dammit_morgan 15th-Apr-2012 02:34 pm (UTC)
I hope its not either but if it is I just want you to know you are not alone. Plenty of women go years and (5-10 doctors) without a diagnosis. I'm just outraged that doctors give wrong information. If you would like there is a secret vulvodynia group on fb (only you know your apart of it, it will not show your friends you are a member) and a web forum if you ever want to get more information. :)
brs18041 15th-Apr-2012 03:05 pm (UTC)
Thanks so much. I'm going on doctor #6, so hopefully I'm getting closer to an answer! What are the links to the FB group and forum?
dammit_morgan 15th-Apr-2012 03:35 pm (UTC)
Fb group, we would have to be friends so I can invite you to the group. Send me a message with your fb url if you would like to be added.
Forum: www.vulvodyniasupportforum.com
archangelbeth 15th-Apr-2012 02:05 pm (UTC)
I would suggest a dermatologist. It could be an allergy. It could be external yeast. There is a small possibility it could be herpes, in a rather uncharacteristic outbreak pattern (if you don't specifically ask for a HSV test, they often don't include it in STD tests). Vulvodynia would take a Pelvic Pain Specialist to rule out -- or confirm, probably. Basically, I think you might get better luck from specialists in skin or pain.

In any case, I think it's time to hit specialists. In the mean time, you might try coconut oil -- antibacterial (mild), anti fungal, and often soothing.

brs18041 15th-Apr-2012 02:26 pm (UTC)
I was tested by my doctor in November for all the strains of herpes, and all results were negative. I've only had two sexual partners ever: my husband (who was a virgin) and an ex (who was also a virgin), so there was a slim to none chance of it being an STD anyway.

There are so many types of specialists, I'm not sure if I should see a vulvar specialist or dermatology specialist next. It's getting hard to take all this time off work for doctor's appts!
archangelbeth 15th-Apr-2012 06:53 pm (UTC)
Remember, cold sores are HSV also (usually HSV-1, which will jump to the genitals) -- something I didn't know till after I was married, and was rather annoyed to find out. (I get 'em. My spouse, fortunately, thinks he had them as a kid, so he hopefully has antibodies, and he hasn't shown any signs of a genital or oral outbreak after 20 years, so... fingers crossed.)

But if you're tested as HSV-antibody-free, that's excellent.

Personally, I'd probably hit the dermatology specialist next, since it's skin and potentially an allergy. On the other hand, a vulvar specialist might be easier to talk to, if they actually know about vulvodynia (it can take a specialist to rule it out!) and have some amount of ability to check out allergy potentials.

If you're washing your stuff in Gain, which has a perfume, then you'll still have perfume residue when you wash in the All; if you've got an allergy to the perfume, there may be enough residue to trigger it. I'd suggest running a nothing-but-towels-and-hot-water cycle or two to try to flush out the Gain-perfume, and going entirely to All until you can find out if this is an allergy or not.

brs18041 15th-Apr-2012 09:07 pm (UTC)
Awesome advice, I wasn't aware of the whole washer-detergent-residue thing. I've been using perfumed detergent all my life, and I know that allergies can randomly start as an adult, so it's worth a shot going all perfume-free!

lorrainec 15th-Apr-2012 03:41 pm (UTC)
I hope this doesn't sound silly, but what kind of laundry detergent do you use for your underwear? Has it (or the amount you use, or the efficacy of the washing machine) changed? I was recently having similar symptoms, though not nearly as severe or prolonged. It turned out to be the detergent, we had switched from the "free and gentle" to regular, and every time I put on nice clean underwear made it worse. And worse. And ow. And the bedsheets, too. I'm thinking those steroid creams wouldn't help much if it's an allergy to something you're spending 16 hours a day rubbing against.

If there's no chance it's something similar, I would also suggest a dermatologist. Though I don't know how much vulvar experience a run-of-the-mill dermatologist would have.
brs18041 15th-Apr-2012 05:01 pm (UTC)
I recently switch from Gain (which smells pretty) to All (free & clear), and bought all white cotton undies. I still use Gain for the rest of my clothes, because I really enjoy the scent, but use All for my undies, PJs, gym shorts, and towels. Which brand "free and gentle" detergent do you use?

Thanks for the recommendation!
lorrainec 15th-Apr-2012 08:14 pm (UTC)
I use Tide Free and Gentle when I can, the store here doesn't carry it very often (hence switching). When I realized my problem might be detergent I rewashed everything without any detergent at all and gave it an extra couple of rinses and that fixed it right up. Now I use minimal detergent, nowhere near the recommended amount on the bottle, since I read that most washers have enough detergent residue to clean at least a couple of loads of laundry.

I'm sorry I couldn't be of more help. Good luck!
brs18041 15th-Apr-2012 09:08 pm (UTC)
That's actually very helpful, I'll try extra rinses and minimal perfume-free detergent. Thanks so much!
ohgodmakeitstop 4th-Sep-2013 12:57 pm (UTC)
Hiya! Did you ever find out what it was? I'm having something similar so would be interested to hear if you got a diagnosis and what helped? I started with a typical yeast infection, treated, got a little better then came back and caused small localised redness, been 2 months but haven't treated for yeast for 6 weeks! No STIs, I did have a mild chemical burn back in April I think due to Veet so wondering if its contact irritant dermatitis. Not got a glaring rash just small redness. Anyway, I read that almost 90% of vulvar issues should be looked at by dermatologist if gynae reasons ruled out. They're even a bit tetchy about vulvodynia and vestibulitis, dermatology should be considered before these diagnoses are made.
Kindra Black Help!13th-Oct-2015 09:22 pm (UTC)
Hey did you ever find out what was going on? I've been having vulvar pain, burning, itching for 3 months...no stds, tested & treated fit bv & yi twice with no success. (I keep testing neg.) They now think contact dermatitis but steroid cream isn't helping....
Alena Marti RE: Help!23rd-Dec-2015 09:40 am (UTC)
Kindra, have you found a solution? Plz get ahold of me
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