The truth about my secret ghosts

I had always imagined I’d write a book or at least a chapter about my work in early years education, not about the ongoing relationship I have with my intimate skin conditions.
In my twenties I accepted my lack of fertility and constant misdiagnosed bouts of thrush. Having a pinhole cervix, fibroids and endometriosis didn’t bode well and after numerous years of suffering and trialing different treatment, monthly Zoladex implants and key hole surgery to establish the extent of disease, I ended up having a full hysterectomy. You get used to being uncomfortable and begin to label it as such, rather than acknowledging it as pain.
But after a couple of years after my op I suddenly experienced a normality, no bloating, no heavy bleeding and no pain! However, the continuing whiteness and uncomfortable vulva continued, with sex becoming increasingly painful. I recall being away on holiday when my GP phoned to tell me to stop using the pessaries I had been prescribed for thrush, as my swabs had come back negative, she was unsure what was wrong. They did every STD test they could but still drew a blank. I was living away from home for a while and with a new GP when they decided to undertake exploratory keyhole surgery prior to my hysterectomy. It was at this point that I was first diagnosed with a chronic skin condition of my vulva, Lichen Sclerosus. I was sent away with Dermovate the strongest topical steroid they prescribe and told to apply if I become sore. No other information, monitoring or advice! I kept up the steroid when I felt it was needed but also tried alternatives, but to no avail!
Then as I approached my five decade year I noticed a spot on my labia that didn’t heal with the steroid, got bigger and became ulcerated. My GP referred me back to gynae and although being told I’d been seen within six weeks, there was no need to worry, so after a five month wait I was finally seen and sent straight away for a biopsy of my vulva.
Within two weeks I was told my LS had developed into pre cancerous cells of a high grade, dVIN. So on my fiftieth birthday I headed for my pre op, having being reassured they had caught it early and a WLE to rid me of the nasty invaders was the way forward. The surgery was pretty brutal as they had spotted a bigger area that they needed to investigate. Nine days later hubby and I sat in a very small quiet waiting room, awaiting the results to say I had vulva cancer!
On reflection from that point to six months after my hemi vulvectomy and removal of groin lymph nodes, is all quite a blur! I was fortunate to stumble across the LS and VC Facebook support groups, which helped me understand and process all I was going through. Now three years on I thought that was the end of my story but no it’s a continuing journey. I was diagnosed with vulva Lichen Planus, on top of LS, surgery has caused me to suffer with pubic lymphedema, which means I have to massage daily, balance the length of time I sit still or exercise and I have physio for damage surgery caused to my nerves and ligaments. I did mange six months of being in control of the LS & LP but my recent gynae oncology review has informed me that the LS is in a flare up, the LP is beginning to travel in to my vagina and there is another area that will be reviewed in a month.
I’m an up beat and confident woman but these silent invaders wreak havoc with my emotional wellness. It took a while, due to the pandemic, to access counselling and it is something I have definitely needed. Theses experiences change you, a cancer diagnosis throws it’s own issues into the mix and although I’m extremely grateful I was naive to think I would return to a life without issues. Yes I’m lucky to have amazing family and friends but I have changed and don’t often like to show how I’m feeling as I now feel it’s a burden, it’s boring or it comes across as me being negative, even depressed! Rationalising this negativity comes and goes, a clumsy comment can trigger a stress trauma which I can find hard to deal with. There is also the huge effort and expense of the required self care; products, clothing and feeling of self indulgence for needing to ‘find’ time to undertake all the self care.
I don’t write to scare or worry others but to highlight the constant need to defend our rights, to shine a light on the need for awareness and to get through those dark days. It is an invisible ghost that haunts my sleep and thoughts in a way I could never have predicted. I have to accept although compliant with all my treatments, it’s incurable and won’t leave me alone!
I try hard to enjoy every moment and not allow it to take control of me, even though deep down the anxiety can be hard to hide. So what I have learnt is to know your body, fight hard to be heard and be seen as only you know what is going on, nobody else walks your path or shares your pain. Be bold, be brave be true to you! X