Kaye
“I have Lichen sclerosus. My Gp didn’t refer me to a gynechologist. I paid privately to get an assessment. I was referred back to the NHS in Carmarthenshire for a biopsy. This took six months. Lost referal letters and no one to support me. By the time I had my biopsies I was diagnosed with chronic Lichen sclerosus. I had lost a third of my vagina because of a lack of treatment. I now have yearly check ups. The information at the start scant .I now get my support from an online forum. Three years later I was called to go for a pre operation assessment due to my condition which causes other conditions and 5 percent more likely to get vulva cancer. I had no idea I was on a waiting list. I was advised to have an appointment with the consultant regarding proposed surgery. He refused to meet me. I was given another gynechologist who had no idea about the operation. Hadn’t read the notes. All there was in a folder of paper was a hand drawn diagram. No other reference. I was asked to attend an operation without any consultation with a weeks notice. I declined.
“I have never seen another consultant in 5 years only trainee gynechologist s. Some know about Lichen sclerosus, some don’t.
“I am on treatment for the rest of my life . Yet getting my treatment onto my prescription is a nightmare. I have to ask for an urgent request as the GPS don’t read the gynechologist letters. I also don’t require a new prescription every month, as it lasts 3 months. So it keeps being discontinued as if I’m not using it. This treatment stops my illness from advancing. LS is under recognized in Wales .I’m so glad there is a UK forum on this that now educates the NHS. Scary as we have a 5% additional chance if vulva cancer. Which is often passed off as post menopause difficulties.
“I feel since I was 60 I’m treated as if I don’t count anymore. Any illness seems to be discounted as ..just my age. The last Gynecologist said ..”all women your age have some thing down there” The nurse said. Your special. Outrageous! I was asked not to complain that it would be dealt with in house. I wish I had had the courage to complain.”
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