'I was in so much pain I had to give up my job' 

Bridget Nelson was diagnosed with a painful, erosive form of lichen planus that affected her mouth and vulva.

Today, she's relatively pain-free and keeps her condition under control with steroid treatments.

"My problems started with an initial flare-up of vulval pain on Christmas Eve 2003, when I was 42, although looking back I'd had mouth soreness and ulceration for about a year before this.

"I thought I had an infection and went to see my GP, who treated me for thrush, but the problem remained. I then had an MRI scan, swabs, a gynaecological scan and X-rays of my lumbar area (spine), but none of the tests showed anything abnormal and the doctors didn't know what was wrong.

"I began to give up hope and got very depressed. Every time I went to see my GP, my flare-up had flared down and there was nothing much to see. In the end I took photographs of my vulva when it had flared up, and showed these to my GP. I got a referral to a dermatologist, and was finally diagnosed with vulval and oral erosive lichen planus.

"I started treatment at the end of July 2005 with a high-potency topical steroid (ointment) for my vulva and a steroid spray for my mouth. It took about four months before my lichen planus was under control with the treatment.

"In the meantime, I was in so much pain I wasn't able to go on long car journeys and had to give up my office-based job, which involved a lot of sitting at a computer. I felt too embarrassed to tell anyone about my condition and a complete failure for not being strong enough to hold down a job.

"I couldn't wear trousers or tights, and sometimes even knickers were too painful against my skin. I mainly wear skirts and stockings now. I also can't take baths, only showers, and without any perfumed shower gels.

"After a while I got to know what triggered my flare-ups: stress and sitting for any length of time. I learnt to avoid these as much as possible, although I sometimes flare up for no reason at all.

"My partner and I had a difficult time together, but he stayed with me and we have adapted with the condition. We're now happier than ever.

"Now my condition is managed really well with a steroid cream called Dermovate, which is for the vulva, and an oral steroid for the mouth lesions. I am mainly free from flare-ups and pain.

"In November 2007, I set up the charity UK Lichen Planus to provide clear, up-to-date information for other people with the condition and give them some much-needed support."

My advice to others

  • join a support group
  • examine your vulva monthly so you can detect any changes, and report them if necessary
  • take photos of persistent lesions so you have a record to show your consultant
  • apply aqueous cream every time you go to the toilet – it provides a barrier and eases the stinging

Page last reviewed: 08/10/2014

Next review due: 08/07/2017