u/Superb-Decision-9247

Hi everyone, I am wondering if anyone else here has pelvic floor dysfunction and vulvodynia as well as Lichen Sclerosus?

I have been struggling with pelvic pain for years and was not taken seriously. The itching was always there for over 15 years, but it was not always bad. I was told it was just thrush. Over the years, my skin became much more sensitive. Then, 10 years ago, I developed chronic pelvic pain. It was vulval and clitoral nerve pain that felt like throbbing, aching and stabbing. I also had pain inside my vagina, with muscle aching and a locked-up feeling. GPs dismissed me. They tested for thrush and STIs, told me nothing was wrong, and treated me for anxiety.

Finally, I got taken seriously because my pain became worse. I had a biopsy last year and was diagnosed with LS. Doctors also think I have pelvic floor dysfunction and vulvodynia. My nerves are so sensitive and the pain is triggered by touch, sex, or exercise. I am being referred to a vulval specialist, a gynecologist, and a pelvic floor therapist, but the wait is long.

My biggest problem now is that the Dermovate ointment flares my vulvodynia pain, so I cannot tolerate it. I tried to push through, but the throbbing and stabbing pain in my clitoris and vulva is so bad that I can't sleep. Because my pain is triggered by touch, I cannot even touch the area to put it on.
I am so scared because my clitoris has shrunk and is now very tiny. The skin on either side seems stuck to it. ​I want to recover. I want to heal my nerves so I can then treat my LS, but the waiting list is so long to get treatment and I am so scared of my clitoris changing even more while I wait.

The clitoral shrinking has terrified me. I want to be able to heal and enjoy sex and pleasure properly again. I am 38 and I don't feel ready for this. This pain and these issues have taken away years of my youth. I am struggling with depression. I tried to get help for so long, but they did not listen and I feel like they failed me.

I am sorry to sound so negative. I'm just so scared. I do not know how to treat my LS and stop the clitoral shrinking when I cannot use the cream. Thank you for listening.

I was recently diagnosed with mild Lichen Sclerosus after a biopsy, but I also have vulvodynia and pelvic floor dysfunction.

​My doctor prescribed Clobetasol ointment for the LS, but every time I try to use it my clitoral and vulval nerve pain flares up badly. The pain and extreme sensitivity make it very hard to apply anything to the area. I am also noticing clitoral shrinkage, which is making me really anxious.

​Has anyone else dealt with both conditions at the same time? Did the steroid ointment trigger your vulvodynia nerve pain too? How did you manage to treat your LS without setting off your nerves? Any advice would be amazing.

I was diagnosed with mild Lichen Sclerosus after a skin biopsy. I have some redness and white patches, but no doctors have ever talked to me about my clitoris. I am too embarrassed to ask them.

​I am very worried because my clitoris has shrunk back and become very small. I have lost a lot of sensation there. My orgasms do not feel as good anymore and sometimes I cannot reach one at all.

​I have been on the mini pill for 3 years. Could this birth control be causing the shrinkage and loss of feeling? I also have Clobetasol ointment, but I do not like using it because it causes me discomfort and flares up my pain.

​Has anyone else had their clitoris get smaller or covered up because of LS? Did changing your birth control or using an estrogen cream help bring your sensation back? How do you use your steroid cream if it hurts?

I'm in my 30s and have been on the mini pill for about 3 years. Over the last couple of years my clitoris has gotten noticeably smaller and I don't feel as much sensation anymore.

​Is this a normal side effect of birth control, or just normal for women in their 30s? I'm quite worried, but I've had bad experiences with doctors ignoring my health issues before, so I've been putting off making an appointment.