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Erosive lichen planus

My problems started when I was 42 with an initial flare of vulvar pain on Christmas Eve 2003, although in retrospect I had had mouth pain and ulceration for about a year before this. I went to my GP three or four times and was treated for thrush. He eventually referred me to a gynecologist who found nothing wrong. He thought the pain might be related to a back injury and referred me to an orthopedic specialist in 2004. I had an MRI, gynecological scan and x-rays of the lumber area and lots of swabs; all test results showed nothing abnormal. I was repeatedly treated for thrush ‘just in case’ with no evidence of infection.

In the spring of 2005, after many trips to 3 different GPs and in despair, almost suicidal, I took it upon myself to find out what was wrong with me. I did research on possible conditions, including lichen planus. When I read a short paragraph on the symptoms in Dr. Howard Glazer’s ‘Vulvodynia Survivor’s Guide’, it was like a lightbulb went off in my head: I KNEW this was what was wrong. But my GP dismissed my theory as it usually just itches, it doesn’t hurt (it’s true for the non-erosive versions of LP).

However, I was referred to a dermatologist and oral specialist who visually confirmed a diagnosis of vulvar and oral (erosive) lichen planus and began treatment in late July 2005 with high potency topical steroids and oral steroid sprays.

Time from the onset of vulvar symptoms to diagnosis and start of treatment: 19 months.

Number of doctors seen: 3

Number of consultants served: 4

LP changes life. During a flare, I can’t sit for long without pain, can’t lie in one position for long, and have difficulty managing long trips. Sex is painful, it is often impossible to wear pants, you cannot eat spicy, citrus or hot food, etc.

This often leads to emotional distress and depression. Worst of all is the isolation. LP is a disease that 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 put aside those you love because they don’t understand the pain you feel. That is why UKLP was created, to provide support for people living with LP.

I have periods of flare-ups and long remissions of symptoms, but I know that LP will be with me for life.

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