VIN-Holding up the mirror in 2020 by Helen Conway

We all do it, time speeds by and before I knew it, in the space of two years, I was married, and had two different jobs in the same organisation, always with a feeling of something isn’t quite right ‘down there’. By down there, I am of course referring to the vulva area which is the external female genital area, not to be confused (as it often is) with the internal areas which include the vagina, cervix, uterus and ovaries. During this time I had also had a cervical smear and thought, ‘Well if something is wrong, the nurse will flag it to me’ after all they see the external area when performing this test. This didn’t happen, so I wrongly put my concerns to the back of my mind as life took hold…fast forward a couple of years to April 2020.


No one predicted what 2020 would be like, least me and at the start of the year my main focus was looking forward to 40th birthday celebrations to be held at the end of the year. I didn’t think that I would be working from home on a day-to-day basis due to Covid 19 and my work would change focus to support the response to Covid 19. Neither did I know that this would be the opportunity for me to seek some advice about my increasing concern about ‘down below’, knowing that I was exhibiting some symptoms which were a real change for me including soreness, cracking and bleeding, which I noticed particularly when I walked. I’m guessing exacerbated by continuing to squeeze into a pair of skinny jeans.


So mid April, I sheepishly made an appointment with a female GP, who called me to talk through the issue and then the horror struck me…she asked; ‘have you had a look at it’, to which I replied ashamedly, ‘no’.
How embarrassing I thought to myself, not to look, not to check my own body. On reflection I can put that down to a few things, being busy, being ignorant or actually just a little bit scared to face into it, maybe a bit of all of the above?! The GP of course took this in her stride, after all I’m sure I’m not the first and certainly won’t be the last…unfortunately. So the task in hand, to hold up the mirror, which included a compact mirror and almost yoga like positions to see and immediately had that sinking feeling that something is really not right. The GP had already stated that she would call me back a couple of hours later, when she did and on the basis of what I found, a raw area with white plaque that I should come on in to be ‘eyeballed’. A couple of days later I went in to the GP surgery, after a very funny conversation in which it was agreed ‘no talking, we’ve already done that, just get your kit off’ to which I responded ‘no date?’ which lightened the issue. The GP was quick to act, saying she hadn’t seen anything like it before and off she referred me on the 2-week cancer pathway. I am very grateful the GP was quick, straightforward and honest.


So two weeks on, I found myself at the local hospital, which during lockdown was a very strange place to be, primarily due to knowing generally only those people on the 2-week pathway or with cancer were being seen at this point during lockdown. The consultant again quick to act and mentioned ‘it looks like it’s VIN’…thinking to myself, I had not heard of this condition before, what is VIN?!. Immediately the consultant confirmed that I would need surgery and also warned me it would be highly likely to return. He gave me the option to have the biopsies there and then (best to get it out the way I thought’ and I actually said the words ‘yep, crack on’, laughing to myself afterwards, which was a welcome distraction as the biopsy procedure ensued. I did think prior to the appointment I’d more than likely be having biopsies, but hadn’t quite realised the extent to which I would be cut and stitched up, so the challenge was on to get home prior to the local anaesthetic wearing off, which was easy enough as the roads were quiet. Although I was uncomfortable down below, I was psychologically comfortable knowing that I would hear soon what I was facing for sure.


Waiting is and uncertainty is hard, no way of dressing this up, it’s HARD and you hold on to the dates as target milestones, thinking you’re getting closer to getting sorted and knowing what the crack is (sorry another pun!). I received a letter asking me to go in about a month later for a ‘photo opportunity’. This provided some amusement to me and was being done to seek advice from the specialist in another hospital. I was told during this consultation that I was VIN2&3, however there was a strong chance there are ‘pinheads’ of cancer. I rationalised this in that the biopsies are only small areas taken away, so actually until it’s removed complete and the full histology has been completed you continue to not know for sure.
Hearing the word cancer made me revert to a complete introvert and as a result I left without asking all the questions I needed to.


Come July and I had been transferred from the local trust over to the nearest University Hospital. By now, I’m used to ‘the dreaded examination’ and now under the care of one of the leading consultants in vulvar disease in this country, for which I am very grateful. I am more grateful for the several opportunities the consultant enabled me to ask questions, which is a massive help and helps you form the questions you need to ask when you are on processing overload. I have received what I would describe as ‘all round care’, which I’d liken to a warm hug of support (social distanced of course!) from the hospitals Specialist Gynaecology oncology nurses. I’m now scheduled to have the wide local excision operation in early September and my next hurdle is to hope for clear margins. My op date also coincides with Gynaecological Awareness Month, which prompted me to share my experience to date.


So this gets me thinking, ‘awareness’ what does this mean to me dealing with an issue, what do I think it should mean for every woman who hasn’t an issue? When I think about it, it’s really very basic, don’t be shy to hold up the mirror, do this regularly (once a month) and get to know your ‘normal’ or more importantly what isn’t normal and act on it. I spent far too much time thinking/worrying about it rather than acting on it, which I regret.


So as I approach my 40th birthday, I know that it is highly likely this will be an on-going issue, as my consultant put it, “I’m on his Christmas card list’. So as I approach my 40th birthday, my birthday wishes include:


•\tNurses who perform smears also have an awareness of vulvar disease and cancer, examine the vulvar area and ask basic screening questions about vulvar health.
•\tGP’s are clear where gynaecological centres of excellence are and women are referred to these directly.
•\tLet’s not be afraid to say the word vulva, either you have one, or someone you know does, so lets get over it.
•\tWomen learn to know their normal – hold up the mirror, talk about it with people close to you, and the more people that do this the better. Normalise checking your vulva as you would check your breasts and don’t be afraid to talk about it/act upon something. I’ve posted about the issue on social media, knowing men would see it too, but remember men have wives, mothers, sisters and daughters too. Don’t leave them out or count it as a ‘female’ issue.