Lichen sclerosus and clitoral nerve pain

[Limey8]

I recently saw a specialist and got diagnosed with lichen sclerosus. My vulva has been sore and itchy for years, with my skin changing in colour and texture. I also started getting nerve pain and sexual issues. I've now got steroid and an emollient cream to use daily for a number of months. My main worry is my clitoral pain, sensitivity and also loss of sensation. I started having nerve pain there that is stabbing, pinching, sometimes aching and burning, but also a loss of sensation during sex or masturbation and weak/muted orgasm and I am in pain afterwards. I am finding applying the cream to my clitoral area difficult and it is causing the nerve pain to flare up, but I have itching and skin changes in that area so I need to apply it there.

It worries me because I feel I must have nerve damage from the years of itching. My clit was bruised and bleeding a month ago after I cut myself by itching in my sleep and some skin around it has changed which I think is scarring. It's so scary and I get pain there sometimes when I move around. I can't do lots of physical activity anymore as it triggers the pain, I had to stop working in physical jobs. I'm in my 30s and it's so awful. I worry about my future. Maybe I should ask my gp about physio? I suspect they will say that I need to wait to see if the cream helps first, but I really think I've got nerve damage as a result of the years of itching, scarred skin and pelvic tension.

I couldn't see a lot online about lichen sclerosus and other conditions. Such as clitorodyina and vulvodynia or pudendal neuralgia. Or pelvic floor dysfunction. Does it seem possible these conditions can be linked to lichen? Now I've got a diagnosis, maybe doctors will take my pain more seriously as I've been fobbed off for so many years.

Does anyone else have/has had these symptoms?

[Shoeysmum]

I too have LS and suffer with many of the same symptoms that you mention.

Not all emollients are the same. My gynae suggested quite a few to me and I bought Double Base which initially stung. I bought Epaderm ointment which doesn't sting at all. If you're in the UK you can buy it quite cheaply off the shelf at Tesco.

There's an excellent support group for LS on Facebook. It's been a lifesaver for me and there are so many excellents tips from the ladies on there.

Good luck xx

[Limey8 in reply to Shoeysmum]

Thanks so much for your reply and sorry to hear you are suffering too. I am in the UK, thanks for letting me know about getting the emollient creams cheaper and also about the Facebook support group. I got Epimax on prescription but it is a large 500g bottle, so will last me ages. I find the emollinet soothing, but still struggling with the steroid ointment. Did you use a steroid? I have Dermovate, which I think is very strong. I'm not sure if my pain flare up is just because I'm touching the area and causing irritation, or if it's the strength of the steroid on the very sensitive area. My pain does get triggered really easily. I probably need to give it a bit of time, but I might go back to my gp if it doesn't settle soon. Thanks again x

[Shoeysmum in reply to Limey8]

Hi Limey8. Yes, Dermovate is what I have on prescription too.

I thought I was having a 3 month flare which is unheard of for me since my flares are infrequent and usually respond quite quickly with the Dermovate. My GP referred me to gynae via the 2 week route. Long story short, the second gynae I saw said I had a discharge which turned out to be thrush but also did a biopsy. It turns out I have VIN2 which is precancerous cells. So, I was referred to a third gynae who prescribed further meds which I started last night.

Unfortunately I know nothing about clitorodyina, vulvodynia, pudendal neuralgia or pelvic floor dysfunction but should you decide to join the Facebook group I mentioned previously then I'm pretty sure some of the ladies in the group will have had experience of those things and will be able to help you.

You mention clitoral pain, sensitivity and also loss of sensation, could it be that there's some fusing going on there? Do you look? I've never been able to see myself but read (in the Fb group) that the best way is to perch a mirror on the top of the toilet seat, straddle the toilet and lower yourself down. This is not so easy to do for a 76 year old LOL but it's the only way that works for me.

Once again, good luck xx