See a specialist for Lichen Sclerosus

*Update 1/7/2025 I saw gynaecology again today and it seems that the previous doctor I saw wasn't actually a consultant - just a fellow - and the fact that she reported so many things incorrectly and didn't follow the right procedure, is not good enough - and caused me an awful few weeks of extra stress. The consultant today was so kind and easy to understand. She did a proper examination with microscope, and acid to check for precancerous cells (which the other didn't do) and said she feels it is safe to wait 3 months before a biopsy, to wait to see if further treatment with steroids heals the ulcer, as the precancerous cells are very mild. So no biopsy today *

Two months ago, I was shocked and grief-stricken to discover that what had made made intimacy uncomfortable for years, wasn't tight scar tissue from birth trauma as I thought - and I have vulval lichen sclerosus – a chronic inflammatory condition that, without me realising, had already changed my anatomy. My skin had thickened. My labia had begun fusing together. My clitoral glans was nearly covered. The entrance to my vagina has been narrowed.

If this condition isn’t well managed for the rest of my life, it could lead to daily pain, difficulty going to the toilet, inability to be intimate with my husband, or even feeling pleasure at all. There's also an increased risk of vulval cancer.

Next week, I’m having a biopsy for suspected vulval cancer, as I have a tiny ulcer that hasn’t healed. It’s my second attempt to get help – the first doctor misrepresented a lot of what I said and was a terrible communicator.

Since then, I’ve referred myself for pelvic physio, psychosexual counselling, and talking therapy on the NHS… but so far, not a single appointment is in sight.

Even now, with a cancer biopsy booked, I still can’t get seen by a dermatology specialist until March next year.

The one thing that was holding me steady was the support of a kind GP who took me seriously, examined me regularly, and made me feel like I wasn’t alone. She told me she wasn’t planning to go anywhere and that she’d help me understand what’s normal and what’s not, because I honestly don’t know anymore.

But I’ve just found out she’s off work indefinitely for personal reasons – and now I’m back to square one. No specialist. No GP who knows what my vulva looked like two months ago. No guarantee the next one will know anything about LS.

I looked into going private, and it’s £300 for a half-hour appointment with someone who really understands LS. A few kind people suggested I make a GoFundMe – because maybe there are others might like to help.

So… here I am

£480 would get me an initial appointment and a follow-up with the Vulva Clinic - a specialist in Oxford. I just can't justify spending that much money on two half-hour appointments.