(no subject)

[patientgirl.livejournal.com]

howdy!
i felt compelled to join because i haven't anyone to commiserate with regarding my recent diagnosis of vulvar dystrophy, hpv and my ongoing saga with pcos.
being diagnosed with vulvar dystrophy in the fall, i was beside myself. convinced that my vagina officially hated me, i was sure my sex life present and future tense would now be obliterated from the scope.
well i've managed to deal with the pain. having sex more intermittently so as to heal the soreness before the next go around.
i figure it's miserable but manageable....could be worse.
it's really disheartening to know that this is the way things may very well be for the rest of my life.
anyway, i look forward to finding out that im not the only girl i know who wasn't given a completely healthy functioning child bearing reproductive system.

Comments

[travellingstar.livejournal.com]

*hugs*

I can relate in so many ways and, no, you're not alone.

[travellingstar.livejournal.com]

Oh, and I'm not sure if you're a member .. pcosupport

[patientgirl.livejournal.com]

hey!
thanks so much....!
i've been on lj forever, and never even thought to look for communities regarding this stuff.

it's crazy how much better i already feel knowing they exist.

[sulingsi.livejournal.com]

trust me, there are many many others with similar or worse stories. i am so sorry to hear about your vaginal troubles.

i checked out vulvar dystrophy and apparently that's a blanket term for several different dermatological problems i've learned about. if you get a moment to tell me about your specific problem, i like to hear people's stories b/c i am a med student and hearing stories makes these things real to me.
thank you for sharing this.

[patientgirl.livejournal.com]

The type I have is Lichen Sclerosus. It was diagnosed with a biopsy taken from the exterior skin of my vulva. (YOWCH!)

Mine's not only on my vulva, but my clitoris as well. They state that symptoms commonly are burning or itching. Mine are neither. It's just a general nondescript irritated sensation...but because some of it is located on the clitoris, at it's worst, it'll send shooting pains up into my abdomen. (GOOD TIMES!) It doesn't feel like it's just on the surface of the skin either....the pain really radiates everywhere.
It's nearly impossible to be comfortable, and I've learned that certain soaps DEFINITELY aggravate it.
So far I've found that body washes by St. Ives (like Swiss Vanilla or Collagen and Elastin) are the only things that seem to keep it calm. Anything abrasive or harsh will keep me in bed for at least a day.

They also say that sex can feel like "sharp knives". This isn't the case with me either. For the first portion of intercourse, I feel pretty normal and comfortable, and as it goes on, if lube isn't reapplied constantly, it really starts to burn strictly in the vulva. Which then causes any natural lubrication to quickly disappear. I'm pretty sore for at least a day before I can even consider attempting intercourse again.

I should say too the symptoms came on as I was clearing up a UTI with antibiotics. Until recently, I'd get recurring UTI's like crazy until my doc decided to keep me stocked with antibiotics to pop after every occurrence of intercourse to stop infection from even starting. I had done everything the rule book said as far as trying to avoid them...but I manage to fall into the teeny percentile of women who just seem to have this problem (like my mother.)

Anyhow, I went in to the doc, thinking the infection hadn't completely cleared up because of the dull annoying pain I had. I had already done research on the web and asked my doc if it could possibly be Vulvar Dystrophy. This prompted the biopsy and diagnosis. The pain was certainly at its worst when I was diagnosed. The first treatment doctors will give is typically a steroid cream to reverse the thinning of tissues. I was nervous. I knew that using a steroid cream could have an adverse effect, but was willing to give it a go.

I'm really nervous about messing with ANY of the sensitive chemistry that goes on down there. I'd rather leave it alone than risk complicating it even further.

Anyhow, after a few weeks, the steroid seemed to really be helping. So I used it less and less and finally weaned myself off of it. The pain was hardly noticeable for a couple months. And then I had the first of a series of relapses.

But the relapses now will last for one day, and be gone the next. I don't know what brings them on, but all I can assume is that this whole thing is hormonal. Considering I have other issues at play...and no one seems to know what causes any of them (GOOD GRIEF!) I can just assume that there's no way I'd get dealt such crappy hand without them being somewhat related.

I'd give anything just to know why I have these issues, when aside from sharing my mother's recurrent UTI's, no other women in my family have dealt with this stuff. They're all healthy babymaking machines (or once were).

Oi vay!

(Hey....you asked!)

(It's just nice to know someone wants to hear this stuff....I'm sure I've bored my friends to death with it.)