Girl, woman, mother, nana, great grandmother, that was how I imagined my life would progress! But no, I was a late developer, deemed frigid, a prude, then barren, and finally the lady with a Frankenstein vulva.
I was physically a late developer and although my mum encouraged me to be open and talk confidently about ‘my bits’, I found it all very embarrassing! I didn’t start my periods until I was sixteen and I was in my twenties before I started a sex life.
So when I began having problems I accepted that my GP was the expert and I didn’t challenge the constant diagnosis of thrush. My marriage broke down, one of the reasons being because I couldn’t conceive and the thought of being poked and prodded ‘down there’ was not for me (although I always attended my cervical screening tests).
I then met a guy who I had a ten-year relationship with, he helped me gain confidence at talking about my body. I was still having period problems and issues with my vulva but I was beginning to enjoy having an intimate relationship. I was still being diagnosed with thrush, although swabs didn’t always confirm this and once when being examined a health professional said I probably had an STI or HPV. Once again I felt embarrassed, humiliated and scared, but all tests came back negative.
I then spent some time working away from home and It was during this time I was referred to a gynaecologist and I was diagnosed with a pin hole cervix, fibroids, severe endometriosis and vulval Lichen Sclerosus. So, in my third decade I was admitted for a full hysterectomy, then sent away with HRT and steroid cream for my vulva, with no information and only one follow up. I felt like I had finally lost my womanhood and I was angry at myself, had I caused this to happen by my lack of confidence at talking openly about my ailments?
Ten years on I remarried and apart from an occasional red and white vulva, I had almost forgotten about my previous pains. My hubby and I enjoyed sex but three years in I was finding it a bit painful and one evening there was blood. So, we got a mirror and had a look…I looked different- my labia minora was gone and there was a small ulcerated spot near my clitoris. I went straight to my GP.
I was referred back to a gynaecologist and was told my LS was out of control and I needed a biopsy. I had never been told that LS needs monitoring or that there is around a 5% higher risk of vulval cancer…who even knew this type of cancer existed? So once again my body was poked, prodded and biopsied. Six months after being referred I was told I had differentiated vulva intraepithelial neoplasia, dVIN, which is pre-cancerous cells that had developed due to my LS not being properly controlled.
My first surgery was a wide local incision and it was brutal! During recovery I walked like a penguin, sitting was uncomfortable, putting my legs together was horrendous, it hurt when I peed and I felt I’d lost even more of my womanhood. Hubby was great but scared to come near me and I began to miss him. My consultant had to inform me that she had found another dodgy area, which she had biopsied during surgery. Then like a punch to my belly I heard the words “I’m sorry to say you have vulva cancer, which is rare”, and I was needing to have more surgery, this time a hemivulvectomy and some lymph nodes removed from my groin.
As I processed this information my husband fell apart, whilst I went into overdrive thinking ‘OMG how on earth could this be happening?’ I’d already had most of my womanhood removed and now this. I told my hubby to leave me because life would never be the same again. He refused and during my recovery he was my rock, reassuring me, nursing me, injecting me with blood thinners and compiling music sets to distract me from the pain.
As I’m a glass half full girl, I had placed a leaflet about post op complications like lymphedema in my medical file, but alas I now have this condition in my groin and pubis, so my vulva often looks like it’s been fighting with Anthony Joshua! To be honest I’ve lost all interest in sex, I do still manage to be intimate with hubby, although I do miss the “togetherness” sex gave us. I have days where I feel odd, empty and worthless. I have accepted that I will be regularly monitored for signs of cancer reoccurrence and to try and get the LS under control. Oh, and to top it off I’ve recently been diagnosis of Lichen Planus, just to add another issue.
Having been legs akimbo for so many consultants, I now want to raise awareness and to hopefully support further generations of girls, women, mothers and grandmothers to talk about their vulvas with confidence! I am a member of the LS and Vulval Cancer UK Support Groups, sharing their information on my social media, I’m now aware of The Eve Appeal and their campaign to raise funds for desperately needed vulva research, I’ve joined the Visible Vulvas art project and I share my story in blogs as often as I can. This summer I am organising a family and friends’ fundraiser, “Vocal About Vulvas” aka VAV Fest, all monies will go to The Eve Appeal’s Vulval Cancer Research Fund.
My story will continue.