My Story | Karen H., Minnesota, USA

Vulva cancer, diagnosed February, 2005 at 49
Vulvectomy, hysterectomy

One morning back in December of 2004, I was taking a shower and I felt a small, pea-size lump on the left side of my vulva area. Just a little concerned, I checked the right side and nothing was there. About two weeks later, I felt a lump (lymph node) in the groin area, so I decided to go for a check up on that. My physician's assistant told me that it was a Bartholin's cyst and she gave me antibiotics.

Well, I really don't like taking those, and I also wanted to see someone about my urinating all the time anyway, so I was referred to a gynecologist. I went to see her the following week and by that time, the lumps had gotten bigger. Yes, within one week, the size was larger! The doctor did not really know what to make of it and she decided to send me in for an ultra sound. That came back with nothing, so we decided to remove the lumps anyway. So, on February 8, 2005, I went in for day surgery. Two days later, my doctor called to tell me that I have vulva cancer and that we needed to get to an oncologist right away.

Within two days, I had my CT scan and the following week I was seeing the head doctor of oncology at the university. That is when it was explained to me what was going to happen: removal of my left vulva, full hysterectomy because of my age and since I already had my tubes snipped. I could not believe what was going to be taken from me. I'm only 49 years old and to lose half of my vulvar area was a big pill to take. One day I'm fine, the next my world is turned upside down.

Well, I went through it and my recovery is still going on and I'm still trying to get back to normal. On bad days I have low self-esteem because of the way it looks. I guess it's like removing a breast. It is just not something I thought I would ever go through - I had never even heard of it.

I read this one article on the web about what to do after surgery for vulva cancer. It said that not wearing underwear was the best way to go and you know what? It is. Just wearing pants was a whole new experience. I learned that hairdryers could be used a whole new way other than to dry the hair on your head. It took two months for my Jackson Pratt tube to come out of my left side - all my clothes were always wet because the thing leaked after about a month. Walking, sitting, standing, all are aggravating because the area is so sensitive.

For my depression, I can now work in my garden since spring is here and everything is coming up. We also have our weekend home up in northern Minnesota and putting my energy into that helps me a lot.

So if you find this worthy of printing on the web, you could fix it up. I am not the best storyteller. (Editor's note: not true, Karen)

May 2005