My name is Jayne Hyde I'm 34 years old.
When I was 25 my vulva started to itch, I didn't think much of it. At the time I worked in a teenage girls home and I had to take one of them to the sexual health clinic. I knew I had to get this itch seen to and when this timid teenager had to go, I thought if she could do it then so could I.
I booked an appointment and took a friend with me, when the sexual health doctor looked she said I had a wart and prescribed me some cream to get rid of it and told me to come back in a week.
I went back and the wart had gone but she could see something else and then informed me it could be vulval cancer, but as it takes a long time for this to develop I could be lucky and it might be only VIN.
I had to go to my GP to make a referral for me to the hospital. Which obviously I did.
My appointment came and I went, there was a male doctor and a female nurse. I was told to strip off my bottoms and get in the chair. I was terrified, he took a look at my bits and said that I had a leison 2cmx3cm and that it needed to be removed. Next thing he told me to cough and I asked why, he said cough, so I did and then he stuck a needle in me with local anaesthetic. Needless to say I swore.
He then cut out the area, stitched me up and said they would call with the results and sent me on my way.
I got a call a few weeks later to say it was VIN 2 but I needed more surgery as they didn't get clear margins. I asked the nurse if I could have it under general anaesthetic and she said it should'nt be a problem. My date came through and I went and did the same routine. Once in the chair I said that I had asked for it to be done under general anaesthetic and his response was that he was not prepared to do it under general anaesthetic as he didn't need to remove much, so unless I was going to have a nervous breakdown it would be done now under local anaesthetic. Well he said cough and I cried my eyes out so he backed off and agreed to rebook for general anaesthetic.
I went to have the rest of what I needed to be removed, removed and they called me to say that between the 2 surgeries it had gone from VIN 2 to cancer but that had got clear margins this time so no need to worry.
They informed me I would have 6 monthly check ups to begin with then it would go to yearly. All was great for a year and a half then it came back. My consultant had changed and I had a really nice lady. She said she needed to do a biopsy but gave me numbing cream to use before the procedure. I was still terrified when I went back in but held it together and she managed to do it with local anaesthetic.
Results came in, it was back but as I was only 28 and it had come back quite quickly they were going to transfer me to another hospital where they had specialists in this area.
Whilst waiting for my appointment I became anxious as I knew from a couple of years before it turned to cancer within a month or so. When I called up to ask what was happening as I hasn't heard anything for a month they said it would be a while as I needed to be discussed in the monthly MTD meeting which would be next week. I was informed not to put my life on hold waiting for the appointment as it may take a while and as it's not a fast progressing cancer they weren't concerned. During this time I had lost my job to having a breakdown and lost where I was living but hey.
Finally my appointment came through and I was prescribed Aldara cream to use and to go back in three months. Luckily the cream worked with minimal side effects and I was told that the VIN had gone. They wanted to see me again in 6 months.
6 months came and no return, they were happy to discharge me back to my local hospital with 6 monthly check ups untill I was clear for 10 years. Since then I have had 2 infected cyst's and one biopsy, I also had LS which they gave me steroid cream for.
At the moment all is looking good but I still get soreness and itching now and again but I know I am being well looked after.
Life was good. The birth of a first grandchild, the holiday of a lifetime in South Africa and, at the age of 58, the feeling that after 6 long years I was almost back to my pre-menopause happy, flush-free, sociable, confident self.
Then WHAM! Just a week after our return I awoke to a burning, prickling vagina. After only a couple of days it had become unbearable. What on earth was going on? If I’m honest, I had had what I can best describe as discomfort and a vague soreness at the entrance to my vagina for a few months but, in the excitement of preparing for a new grandchild and planning a holiday, I had done what women are so good at and sent it to the back of the ‘sort it out’ queue. My husband was recovering from prostate surgery earlier in the year and sex had been sidelined at this point. Maybe if that hadn’t been the case I would have been more aware of what was developing. Sadly, circumstance decreed it was the perfect storm.
Anyway, within a couple of days I found myself unable to sit or walk without wanting to cry, which I did...a lot. Vaginal Atrophy feels as though a large cactus doused in acid has been vigorously rammed up your vagina. And there it stays. Whatever you do every minute of every day it’s there. The pain can be overwhelming. As well as burning there is a dreadful soreness of the vulva with constant itching and prickling. It becomes impossible to focus on anything else and impacts on your life in a way that is so difficult to describe to a non-sufferer. It eats away at your very core. As an extra bonus the vagina also produces a watery, thin, viscously acidic discharge which leaks continuously, making your vulva sore and sensitive.. I was unprepared and in shock. I felt total panic.
I had never appreciated how isolating and lonely having chronic pain can be. I’m so lucky to have a wonderful husband who has been an absolute rock, but I needed someone to talk to who understood. But who? I had never read or heard of any of this before. Surely if someone I knew had felt like this they would have mentioned it? I have friends, many of whom are of a similar age and number a midwife, several nurses and a physio amongst them. We have known each other for years and discuss literally anything; no holds barred and no topic is out of bounds. Or so I thought.
I made an appointment to see a GP and then by complete luck, via a convoluted online path, fell upon a private Facebook group, Vaginal Atrophy. What a revelation. This is a new world to me, populated by about 2000 (and growing) women who are battling this condition. It has been a complete eye opener and a godsend in equal measures. Thanks to the amazing Jane Lewis and other ladies there I was able to see my GP forewarned and forearmed with information to ‘do battle’ to get the treatment I need. My GP is lovely but has no idea of how devastating VA is - it’s apparently just a little vaginal dryness!! (Another story, another time.) It was also a revelation that planning my life around the nearest toilet as I had been for many months was all part of my oestrogen deprivation. Who knew?
The emotional impact of VA is immense and 6 months after it struck I’m still feeling it. VA takes over your life and impacts on every part of it. I’ve become a slave to my vagina, but not in a good way! She’s the first thing I think of in the morning and the last thing I think of before going to sleep at night. The uncertainty of not knowing whether each day will be a good one or not is all-consuming and exhausting and takes the edge off planning anything. My husband, family and friends are often on the receiving end of my unpredictability.
But mostly I’m furious. Furious that I had never even heard of VA before it struck. If I had then I would not have ignored the symptoms and they may not have become so acute. (This lack of knowledge MUST change.) Furious that I’ve become a member of a secret club that I had no say in joining. Furious that, despite my husband doing his best to understand, I either retreat into myself or become a snappy harridan on a bad day and then beat myself up with guilt. Furious that I know I have to be on medication for life to try to control this and furious that I have had to educate and continue to battle with my GP to get it. Furious that I can no longer ride my bike, go for a run or swim; if I do I pay for it for days afterwards so it just isn’t worth it. Furious that I can’t wear jeans; floaty dresses and going commando are fine in the summer but as winter approaches...?!! Furious that my underwear is now straight out of Bridget Jones’ top drawer. Furious that my sex life has suffered - see above re bikes, running and swimming! Furious that I feel less of a woman and a wife.
And when the fury subsides I just feel sad. I want to be me again.
Write something about yourself. No need to be fancy, just an overview.