6 yrs mis-diagnosed, new w/ Vaginal P

[morhocam]

Wow--just reading through some of the threads made me feel better (and my sadness with this "battle" has been concerning me, too).

I have exhibited symptoms for almost 6 years, seeing four different GYNs who cited the symptoms to be of dermatitis, vaginitis, or a result of my bike riding--I am an avid cyclist and do believe the Psoriasis started as part of a "Koebner phenomenon" from being on my bike for over 9 hours one day. One previous GYN even cited herpes when I went to her with a flare-up, after I had intercourse with my (now) husband. Although a negative culture came back, she cited false-negatives can occur with an HSV2 dx--this was terrible for a fairly new relationship and confusing since my husband never experienced a symptom, but i was exhibiting these symptoms of itching redness and bumps even when I wasn't having sex! So, did I have herpes or not?

My flare-ups have symptoms of redness, severe itching, and cracking in the folds that cause pain. I have never seem a derm for the issue, because of the "location." Another year passed with these flare-ups and I had started seeing a new GYN. I was impressed with her credentials and seeing me and my condition, she did what no other GYN would do--biopsied my skin and discovered Psoriasis. The Psoriasis diagnosis came as a relief in one regard, because of the years of frustration I had being told it was “something else.” However, in another regard, the symptoms are not improving and the severity seems to be worsening.

My treatment (since July 2005), included Calcipotriene (Dovonex) 2 x/day and Clobetasol Propionate 0.05% 1 x/day. I, myself, noticed the Vitamin D cream seeming to worsen my flare-ups and decreased to 1x/day, then (upon researching it), found Dovonex to be contraindicated for vaginal treatment. Therefore, I am only using the corticosteroid ointment, at night.

I am seeing my GYN again next week and am requesting a referral to a derm, but since derm appointments are booking out until May, I am asking her for advice on tx next week. The psoriasis affects my vaginal area, some towards the perineum, and on my upper thigh, where it meets my genitalia.

What else can I do? I need to be my own advocate as a healthy 30-year-old woman (not overweight, as the inverse p sometimes suggests) and recently married, I would like to use a different form of birth control rather than the vaginal psoriasis :-(

Please respond with help and hope--thank you very much.

[seedoubleyou]

Hi & welcome: SO sorry to hear about your DX; been there, done that & well understand both your frustration AND your discomfort. I hope you'll be encouraged, though, to hear there IS hope.

I've been treated by a multi-disciplinary team and so far, so good. I DO still flare on occasion and yes, I firmly believe Koebnerization is the culprit. The friction from various activities is an obvious irritant, but even something as benign as sitting for extended periods can aggravate my skin!! (FYI, I found a seat cushion designed for folks with a broken coccyx to be a lifesaver.)

Many board participants have used ointments containing zinc oxide (eg, Desitin) & have found relief, though they didn't do a thing for me.

My treatment regimen is as follows:

1) I alternate every-other-day using Cutivate (Class III corticosteroid) & Protopic, 2Xday, on the affected areas. (Even when all is well, I continue to use these prophylactically.) I use only a pea-sized amount and have been doing this for over a year now -- all docs assure me that there is no evidence of atrophy.

2) I launder ALL items that come into contact with the area (undies, towels, etc.) using only All Free & Clear (or whatever "free" detergent you choose) and NO FABRIC SOFTENER OF ANY KIND, neither liquid nor dryer sheets.

3) Recommended skin cleansers were Cetaphil, Dove-for-sensitive-skin, Basis, & Pears. (All were irritating to me, personally, with the exception of Dove; that's what I continue to use.)

4) Use only white, unscented t.p. and, errrr, gently pat dry; no baby wipe-type products allowed.

5) Any fissuring can be treated/protected using one of the OTC liquid adhesive products & dryed using blow dryer on low/cool setting. (I never tried this myself though I did have one particularly bad fissure Dermabond'ed by the doc.)

6) For times when the pain is TOO uncomfy (usually "the morning after"), I was RX'd a lidocaine cream to use sparingly. (Other options include OTC anesthetic sprays [eg, Dermaplast], provided you're not allergic to benzocaine.)

Hope this helps!! :)

[OhComeNow]

Cat, thanks so much for the info. Despite Enbrel and mtx, I still have stubborn painful, bleeding vaginal fissures. I thought I'd tried everything, but I have never heard of Dermabond. I'll give it a try.

Amazing what you can learn on these boards!

A brief story: I was also originally diagnosed with herpes. I asked for a lab culture, but the gyn said, "I know herpes when I see it." As a new bride this was needless to say very upsetting to me! I moved to another city about a year later, got a new gyn, whose nurse took one look and said, "psoriasis!"

Too bad for those docs who cause us needless pain and anxiety.

Best wishes,
Carol

[RichJ]

hi morhocam,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[PJ Leary]

Hi Carol,

I am glad you did finally get an accurate diagnosis. If the enbrel does not clear the vaginal p, you may want to consider trying another biologic. It is certainly worthy of a discussion with your derm & ob/gyn.


I have had cervical and genital p at different times over the years. The cervical was dignosed after a bad PAP smear more than ten years ago, the biopsy showed it to be psoriatic cells, not cancer. I was never bothered by it in any manner. Genital p, on the other hand, is very painful and irritating, and I can only imagine what vaginal p would be like.

I would seriously caution you against using clobetasol in the genital area. It is well known for thinning the skin, and that is something you don't want in the genital or peritineal areas. I assume since you are a new bride, you may want to have children one day. Thinning the peritineum will make tearing more likely with a normal vaginal birth.

That said, plain old TAC cream can be used without any trouble in the genital area, just as it can be used in other "warm, moist "areas of the body like behind the knees and under the arms. It may be prudent to find a compounding pharmacy that will mix the TAC cream 50-50 with something like Aquaphor. ( MIke, we're going to need some links here, please ).

I would suggest a script for attarax to help with the itching. Start taking it on a day off since it will make you sleepy for the first 48 hours. It really will help, though, up to 50mg every four hours is safe.

I wonder how long you've been on enbrel? Please let us know. Many people who have moderate or no esponse to one biologic will respond wonderfully to another. Vaginal psoriasis alone causes you to have a severe case, and you should be able to get coverage for any of the biologics out there.

Regards,

[nla]

I just wanted to add another "welcome"! Glad you have found us but sorry to see you join our group. I can't imagine what you have gone through with such a mis-disagnosis! I must say, though, you are now in good hands with both Cat and PJ!!! More informative than any two doctors I know :)

Nancy

PS: Cat: nice to "see" you! How's school going and are you behaving? ;)

[seedoubleyou]

Carol: You're SO welcome!! :)

Also intended to add to the above -- a peri-bottle is a great item to have on hand. I have a couple accumulated from hospital stays for various surgeries, but you can acquire one from a home-health supply (many pharmacies have special sections for these type items nowadays, too). I fill the bottle with warm water, add baking soda, and rinse the area. Have found it to be very soothing for the itch/burn!!

Miss Nancy: No, darn it, I've not been "beinhav" (does anyone say that outside of Texas?? :p ). Got a wild hair on New Year's Eve and am payin' for it, BIGTIME -- had to withdraw from school this week (*sniffle*) because I now have to undergo knee surgery!! :o (I'll post details on "can't be happening" thread)

[morhocam]

Carol--your "brief story" sounds just like my own journal entry. The doc took one look and said, "I'll do a culture, but I know what it is." Just awful--psychologically and physically, since it set me back another year of missing the psoriasis.

If only Blue-Cross/Blue-Shield could be like a grocery store, so we could "shop around" for docs.

PJ--your tx advice is so very helpful, as is just the mere understanding of it all. Yes, childbirth is in our future and thinking of it has been emotionally taxing because of the affected area.

Thanks to everyone.

Believe it or not, I actually got a derm appt for tomorrow--either they realized it really was an emergency, or tears were effective this time. I am in the midst of a vaginal flare and it seems to be spreading toward my anus, so (despite the pain), I am glad she is able to see everything "active." I took notes from all of your experiences so I can be my own advocate for tx.

I hope I'll be able to walk normal again soon (instead of looking like I just rode a horse) and get off my doughnut pillow. I can't express how much this web site and all of you have helped me in this brief, but trying time. Thank you.

[OhComeNow]

I appreciate the information you gave. What a godsend. To clarify: I was a new bride at the time I developed vaginal psoriasis; however, I am not a new bride now. I went on to have a child by C-Section. The enbrel got rid of 90% of the vaginal flaking, itching, and weeping but the two fissures are still there after 18 months of treatment. (I have severe PA with this, by the way.) Since the fissures often bleed I wear a light days pad daily. Nothing has helped and do worry about thinning as well as infection, so I'm reluctant to over-use any creams. Psoriasis seems to like "hair" because my other affected area was the scalp and ears, but the enbrel took care of that also. Only the fissures remain.