Vulval cancer ~ Way off that level of normal by Jill Gordon

I had been experiencing itching and discomfort on my vulva off and on for about 7 years or more. Canesten was a constant repeat prescription with only limited relief. I had presented over the years with symptoms and been treated for thrush, or advised about washing powders, soaps or too much sugar in my urine. In the year leading up to diagnosis I had been told my symptoms were from menopause. With hindsight I should have been more direct and explicit with the doctors and asked to be examined. My burning and pain felt like it was at the vaginal opening so that's what I complained about.
In September 2018 I presented myself at the locum GP and told her I thought I had Lichen Sclerosis as the burning, itching and bleeding was unbearable. She corrected my pronunciation of Lichen Sclerosis and then asked me what did I know about it! I lied and said my mother had it and on that basis she then examined me and confirmed my self diagnosis. During the consultation she discovered I had been bleeding post menopause and advised that she would be sending me for womb biopsies. Bleeding after menopause needs investigation as it can be a sign of womb cancer. I'd been dismissing it as just my hormones and wasn't unduly concerned.
Two weeks later I was seen at an outpatient clinic for biopsies of my womb. Unfortunately, as I'd never had a vaginal birth my cervix was too tight and the doctor couldn't get through to take the samples. After a number of attempts and increasingly torturous looking equipment he said I was going to have to be admitted and have the procedure done under general anaesthetic.
I was admitted a couple of weeks later to have a hysteroscopy and biopsies under anaesthetic. On the morning of surgery I had a chance conversation with a consultant gynecologist that I since have had no doubt saved my life. I asked if she could be gentle during surgery as everything was so raw and sore down there. She was surprised that the steroid regime for Lichen Sclerosis hadn't been helping, and she suggested doing vulval biopsies as well.

Three weeks later, barely a week before my 49th birthday, I was told I had VIN3 and squamous cell carcinoma of the vulva. My womb biopsies were clear. Had the vulval biopsies not been taken I would have been misguidedly walking about thinking I was fine while my cancer continued to grow.
It was another month before the surgery to remove the cancer took place. I also had sentinel lymph node dissection on both sides to check if the cancer had spread.
I was lucky, my cancer was contained in the vulval area, albeit very close to my anus and there was concern that trying for clear margins could damage my sphincter and risk incontinence.
Scroll forward to the present and I've had biopsies repeated as I was symptomatic and the gynae oncologist suspected there was evidence of VIN. I'm just waiting, hoping for the best but won't be surprised if it's not good news. Vulval cancer likes to recur, especially within the first two years.
I'm surprisingly calm about it. Even though it's been a tough journey. It's the things you wouldn't expect though that I've found tough.
I'm blessed with amazing family and friends and I've had amazing support. Messages of thoughts and prayers from people I barely know really lifted my spirits in difficult times. They helped compensate for the people who couldn't handle my diagnosis and disappeared.
The judgement can be pretty tough too. Comments like, " Oh well at least it wasn't breast cancer!", "awe at least it was only surgery and she didn't need chemo". I don't think you can compare cancers and cancer treatments like that. All cancer sucks in my opinion. Vulval cancer, like any other cancer, has its own individual challenges. It's quite rare and a lot of people have never heard of it. Those that have heard of it believe it to be only an older ladies disease. The average GP will see only one case every seven years. It's difficult to talk about because of where it is. It's still a taboo with a stigma attached - as if we got it because of our sexual activity. There are lots of misconceptions about vulval cancer but it's not the easy cancer some believe it to be. The surgery to save our lives is often described as barbaric and mutilating by some ladies. The physical and psychological after effects can be severe and long lasting. It's painful, and traumatic and often very lonely and isolating. Finding the facebook support group truly saved my sanity, despite me having a really great support network.
I've been very open about my diagnosis, using my experience as an opportunity to raise awareness where I can. I no longer care who judges me as long as people talk about vulval cancer. I use the word vulva as often as I can and encourage others to as well. It should be as normal as saying elbow - although judging by the look of horror on some folks face sometimes, we are a way off that level of normal!