We need to check our vulvas and be aware of any changes

Sarah tells us her story of being repeatedly misdiagnosed for VIN and why she wants everyone to know their normal and check their vulva.

My first ever cervical screening test when I was 25 came back all clear, it was only on my second one, when I was now 28 that I was told I had high grade pre-cancerous cells.

It was a really worrying time for myself and my family as following the colposcopy I was also told that cancer couldn’t be completely ruled out. I was given LLETZ and had follow up colposcopies for some time. After these procedures I was still being told that I had low grade pre-cancerous cells but that it wasn’t a major cause for concern. Trusting the doctors, I just accepted that this was something that may always be there, and was just ‘one of those things’.

Fast forward to 2015, I was now 30 and having really bad itching, really bad, and consequently was given 6 months of thrush treatment. This wasn’t really doing much and I was itching myself to the point I would bleed. It was so uncomfortable. I was misdiagnosed with thrush several times and also referred to my local sexual health clinic for suspected warts. I found this really embarrassing and a little upsetting and ended up having to visit the clinic several times to try and get the suspected warts treated. It wasn’t until my 3rd visit that one of the doctors seeing me wasn’t happy with what she had seen and mentioned vulval intraepithelial neoplasia (VIN). VIN is changes to certain cells in the vulva, these changes aren’t cancerous, but could become a cancer at a later date.

I had never even heard of VIN, I am embarrassed to say I didn’t even know what part of ‘down there’ the vulva was!

The doctor immediately referred me to my local hospital, however my worrying got the better of me and I paid to see a Consultant privately and had biopsies taken with local anaesthetic, which found that I had VIN 2. Unfortunately my local hospital are unable to treat this so I was referred to Leicester hospital. In May 2017 I had laser treatment to remove the cells.

Amazingly, since then I’ve had the great news that my last 2 cervical screening tests were clear and I have been referred back to 3 year smear tests however the VIN has come back in other areas and last week I had further biopsies and laser under general anaesthetic for suspected VIN 1/2 but I am awaiting confirmation on this.

I want younger ladies like myself to be aware of any changes to the vulva. Everything I read following my diagnosis states that it’s mostly women of a certain age (50+) that have VIN which in my case isn’t true. Initially reading this made me feel quite alone but after speaking with other ladies it doesn’t seem to necessarily be the case. I asked my consultant why it’s so ‘rare’ and her response was that it’s down to research and awareness. She said that they are now implementing something where ladies who have been unresponsive to treatment for genital warts are referred for potentially having VIN.

We are repeatedly and rightly told by the media to always go for our cervical screening test but what we aren’t told enough is to check our vulva and be aware of changes. Even my own GP never considered VIN and we need better education and awareness on this.

I’m thankful that I knew something wasn’t quite right with myself but also disappointed that I was constantly treated for thrush and warts when the problem was a little more serious than that.

I just hate that this seems to be such a taboo subject when women are dying of vulva cancer and repeatedly being misdiagnosed with other various conditions. I am really passionate about this and want to spread the word about my experience in the hope that it can help someone else.

Click here for more information on VIN and vulval cancer

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