My problems started when I was 42 with an initial flare up of vulval pain on Christmas Eve 2003, although looking back I had had mouth soreness and ulceration for about a year prior to this. I went to my GP three or four times and was treated for thrush. Eventually she referred me to a gynecologist who found nothing wrong. He thought the pain may be related to a back injury and referred me to an orthopedic specialist in 2004, I had an MRI scan, gynecological scan and x-rays of lumber area and many swabs – all test results showed nothing abnormal. I was repeatedly treated for thrush ‘just in case’ without evidence of infection.
In the spring of 2005 after many trips to 3 different GP’s and in desperation – almost suicidal – I took on the responsibility for finding out what was wrong with me. I researched into possible conditions, including lichen planus. When I read a small paragraph of the symptoms in Dr Howard Glazer’s ‘The Vulvodynia Survivor’s Guide’ it was as though a light bulb lit in my head – I KNEW this was what was wrong. But my theory was dismissed by my GP as it is usually only itchy not painful (true for the non erosive versions of LP).
Nevertheless I was referred to a dermatologist and an oral specialist who both confirmed visually a diagnosis of vulval and oral (erosive) lichen planus and I started treatment at end of July 2005 with high potency topical steroid and oral steroidal spray.
Time from onset of vulval symptoms to diagnosis and start of treatment: 19 months.
Number of GP’s seen: 3
Number of consultants seen: 4
LP is life changing. During a flare up, I can’t sit down for long without pain, cannot lie down for long in one position and have difficulty managing long journeys. Sex is painful, wearing trousers often impossible, can’t eat spicy, citric or hot food etc.
This often leads to emotional distress and depression. The worst thing of all is the isolation. LP is a disease you, your family and your friends have probably never heard of. You feel isolated and in pain. You ask the questions ‘why me’ and ‘what have I done to deserve this’. You shut out the ones you love, because they don’t – can’t understand the pain you feel. This is why UKLP was set up, to provide support to those living with LP.
I have periods of flare ups and long remissions from the symptoms, but I know that LP will be with me for life.