My Story | Caroline C., United Kingdom

Cancer of the vulva, diagnosed 1998 at 43
Excisional biopsy, lymphadenectomy, radiotherapy

For seven years I had had a cyst on the outer edge of the vulva. Repeated attempts to have this removed were met with phrases such as, "It's not a problem, come back when it IS one," or, "We'll try a course of antibiotics." Eventually, I gave up.

By 1996, I was getting recurrent bouts of thrush and seemed to have a constant itch, obviously due to the thrush. Having spent many years raising my two children alone after my divorce in 1986, I eventually met my soul mate in 1997.

I was slim, very active, independent, and happy -- then the itching got worse, the cyst changed colour, and began to smell. I was referred to a specialist, but had to wait six months. I saw her in May 1998 and went into hospital the next day for a biopsy. ("You are lucky I have a cancellation," said she, "or you'd have to wait another six months")

The following week I was told I had cancer (I'd already figured this out for myself) and would be back in hospital within the month for a radical vulvectomy.

As it turned out, the original biopsy was considered good enough and "my bits" were left intact but both sets of lymph nodes in the groin were completely removed. Evidence of cancer was found in one set and there followed six weeks of intensive radiotherapy - painful, but bearable.

I was told I would soon be climbing hills again and as good as new with just a little swelling. However, I now have lymphedema of both legs as well as the groin. Keeping my "bits" hasn't worked out, as I have no feeling down below except pain. Both thighs have high degrees of nerve damage. Basically this means that apart from numbness there's pain. I also have severe muscle damage in both thighs and the muscles constantly twist of their own will. I walk with the aid of a stick.

I also seem to get strange patches of scarlet rash on my legs and groin -- very hot and painful, but the doctors don't seem to know why.

I'm physically much larger, slower, and definitely feel less attractive. Nobody seems to know anyone else I can talk to, but the itching goes on. What does it mean? I can guess, but I'll probably have to wait another seven years to be taken seriously.

Nobody, I've mentioned this to seems to have heard of vulva cancer, but it's about time all women were warned.

May 2005