Lichen Sclerosus and a white clitoris?! Where did that come from?!

Kgizmo, this sounds exactly like what I have been dealing with for the last 2 months and I am about ready to lose my mind trying to find answers. My gyn seems to be at a lost. All tests kept coming back negative for everything so as a last resort she did a biopsy last week but I am still waiting on the results. Did the dermatologist provide any answers for you or relief? I am desperate for answers as well.

Hi Kris,

Yes it's been 8 months now (wow) and I got to a vulvar pain specialist at Royal Free Hospital. They checked it over, did a vinegar stain thing and took a biopsy. 2 months later I was diagnosed with lichen simplex chronicus which I think is basically dermatitis, non s

Hi. The consultant I saw was amazing - she has appeared on the Embarassing Bodies TV program talking about LS. I was fortunate to have health insurance and was only about an hours drive away. She is Karen Gibbon, Holly House Hospital in Buckhurst Hill if that is any good for you. She thought it was LS straightaway and then did a biopsy which confirmed it. She didn't judge me when I decided not to use the steroid cream she prescribed and was very easy to talk to.

Sue

Sorry...non-specific skin irritation, I certainly didn't get a diagnosis for lichen sclerosus or anything else. I've been prescribed a steroid (nerisone oily cream) to use daily for a month, every other day for a month and every 3 days for a month. After the first month the steroid gave me external thrush but treated that with oral fluconazole. I'd say overall things are improving slowly. I have only been treating myself with the steroid since mid January but from sept/oct with careful vulva care I was able to have sex and this has been increasing in frequency and variety, just has to start slow. I think my clitoris is perfectly fine, the pearly pinky whiteness seems normal and a trip to the gyn and seperately pain specialist did not bring up any other skin condition that lichen simplex chronicus. I think it's a little like eczema but it takes much longer to treat due to the moistness of the area. I've noticed general improvement very very gradually, at one point I couldn't walk without pain or wear even leggings but I'm fine now, day to day it's fine, it's only really on touch it's become an issue which has left me worried about PVD, but now you've had a biopsy they should be able to isolate if it's skin and treat appropriately. With skin irritation that isn't a specific disease there is hope you can treat it over a few months. I've noticed being in water helps at the time but after is irritating as things dry out, I try to use dermol 600 in the bath, weak neutral shower gels and do not use them on the vulva, had a break from steroid after it gave me external yeast but going back to twice weakly. And I'm booked into see a private vulval dermatologist as if this is skin based in going to see the best there is get back in touch with me when you get your biopsy back, it's very often a skin issue, they reckon almost 70-80% of the time it's skin and a lot of these can be treated/managed so try most of all to keep calm and not get too stressed as it can get better and the reason mine went stratospheric at the beginning was because I freaked! Panicked so much I stopped eating and lost weight etc etc anyhow good luck

Thanks Sue, I'm off to see a Dr Janet Ross soon (unless I hear anything concerning) but could consider dr Karen gibbon, I've not got insurance and am a freelancer with varying wages so I do have to choose carefully. Is she a vulvar dermatologist interested in all aspects or specialist in LS. I've had a biopsy and it showed a chronic dermatitis that is being treated with nerisone oily cream steroid but I'm not convinced so would like to see a specialist who might be able to recheck the biopsy etc

She is a dermatologist but I think she specialises in vulval conditions. Good luck.

Sue

I have just checked the Holly House website and it says: Dr Gibbon runs the vulval dermatology service at Holly House and sees women and children of all ages with a variety of skin problems.

Sue

I have the exact same symptoms. I can't seem to get doctors to react or diagnose . 

Im very picky when it comes to my clit , especially since i first discovered it at 12 .. it was itchy and white also .. i used a flash light on my phone and rubbed one side of it in circular motion & i noticed a white substance was shedding off . .. so on the regular after a long day i take time out to put the led flash light on it and clean it .. i go so far as to use sharp objects like a kind of dual hook needle to press the tip of it against my clit and VERY SOFTLY (IN A CIRCULAR MOTION) scrap it off .. its just been sitting on your clit and is becoming a part of it ..

Hello,

I appreciate this post is quite old now but just wondered if the original poster had any further info they could share? I’ve got the same symptoms-just whiteness and occasional discomfort. Saw Dr Gibbon and she didn’t think it was LS but I haven’t had any tests done and I’m sure the area is shrinking?!? 

I’m 5 months postpartum and breastfeeding so hoping hormones are to blame for the shrinkage but just wondered if there was any further info since the poster could share?

Thank you