Lichen Sclerosus ~ My LS problem

I was diagnosed a couple of years ago, albeit I allegedly had it for years before but was treated for bad thrush etc. I was prescribed Canesten cream, which I used virtually all the time.

I am nearly 70 now and have not had sex with my husband for many years. I used to joke with my friends that if I didn’t have to wee, it would close up. Anyway, one day whilst wiping myself I couldn’t feel anything, it felt “closed”. I lay on the bed and felt the “closure “ I tried to pull it apart but the pain was indescribable and blood everywhere.

I managed to get an appointment with a locum who immediately diagnosed me with LS. Because of the length of time without diagnosis, she fast tracked me to oncology gynecologist. He was certain there was no cancer and requested my GP to refer me to Ls specialist.

Trying to see a consultant was a nightmare and i was pushed from pillar to post. I eventually paid privately to be seen by the consult indicated by the gynacologist.

She runs a joint Dermatology/Gynecology clinic weekly at my local hospital but “The Board” refused me access due to funding.

After a year of fighting I was eventually referred through the Gynecology department. Unfortunately the specialist surgeon left in September and i have to wait until January to see another doctor. I don’t think she is an LS specialist, if not I shall just have to pay privately again. Being a pensioner, this goes against the grain.

Through the joint clinic, i was prescribed high doses of amitriptyline and then prednisolone. Unfortunately I couldn’t tolerate these high doses so came off amitriptyline and weaned myself down to 5mg of prednisolone.

I was also prescribed Nerisone ointment to use daily. Unfortunately the manufacturers are unable to meet demand. I have just enough left to see me through to my January appointment!

None of the GPs in my surgery had heard of LS and none of the nurses were aware of it either. None of my friends had heard of it either.
What a sorry state of affairs.