Hello all, I thought I'd come to update you on the latest, as I know this is an issue for a few of us.
I went to see the GP, who thought I had vaginal atrophy due to menopause (my vagina works, but never mind). She therefore gave me an oestrogen cream to be applied to the vulva. Which I dutifully did. This resulted in my genitals becoming so red and inflamed that I resembled one of those chimpanzees in the jungle, and having to work from home in a robe with no knickers. Humiliating, painful and not fun. And clearly the wrong treatment.
I got in touch with the surgery and was told there was absolutely no appointments available unless I went to see a male paramedic. Not great.
So I got in touch with a dermatologist friend, who recommended I continue applying the mild cortisone cream twice daily. This was enormously helpful, and I was able to wear knickers again, and work at an office like a normal person. But the itch was real - and persistent.
Cue return to the GP a week later, who heard my tale of woe and sent me to a specialist. To my horror, the referal form (which I saw in my NHS app) said 'suspected cancer referral form' which absolutely freaked me out. Turns out that this is just how the process is called. So not at all unnerving for patients.
The gynaecologist who saw me was excellent. She discarded both lichen sclerosus and planus, and she said it looked like something potentially allergic. While she made these sage remarks, my legs where in stirrups and my vulva on a monitor screen to the side, in it's full Technicolor glory. There is a first for everything, I guess, but at that point I was past caring.
She commended my dermatologist friend for her choice of cortisone treatment suggestion and asked me to keep at it for a month, then reduce the dose gradually. Oh, and I also had developed a yeast infection as a result of the previous UTI treatments, which I cured with a pessary, and was fun to see on screen.
As many of you have suggested, she said I should moisturise with Epaderm or similar EVERY DAY and avoid soaps, harsh detergents and other chemicals. I now use soap nuts for an underwear wash every week, and as a previous poster suggested up-thread, I've embraced the hippie detergents with abandon.
So, since then I am better, but my inner labia are still irritated. The itchiness is mostly gone, except some soreness close to the clitoris and urethra (what is that about??) and I'll start reducing the frequency of the cortisone cream. So I am not back to normal, but better.
There you go. I would love for this to go completely and feel normal again, but at least it's bearable now. Also, I'd like to understand the cause!
My heart goes out to any of you having similar issues. Please feel free to share, it's very useful to hear your experiences.