One of the fastest growing concerns in vulval health. This condition is linked to the HPV (virus) that causes cervical cancer. However, nobody is educating women on the dangers of this condition, on how to detect it and recognise the symptoms. This page is about to undergo construction. In the meantime, VHAC invites women who are challenged by VIN to share and interact on this page in the comments section below.
Links for VIN
https://www.facebook.com/groups/245538888840656/
http://www.patient.co.uk/health/Vulval-Intra-epithelial-Neoplasia.htm
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hey i need to know more about this pls cause its new to me to that i have it about 5months ago.ths.
Lesley, thank you for sharing and for being the first to write about your personal experience on the site. The site is being updated and I am aiming to focus a lot on VIN because it truly is a ‘hidden’ epidemic and the medical politics surrounding it are unclear, unfair and unequal. It takes a lot of time to get a good site going and I have been working on the ‘other’ site for lichen sclerosus, another condition that deserves more awareness and a condition that can cause a ‘differentiated’ type of VIN which is not HPV related. Not many people know this either! At all the medical conferences I attend where there are talks on VIN, the very first piece of advice that doctors are told to offer patients is to give up smoking. I wish you success with overcoming the challenges of giving up smoking and please do feel free to share with us again on how you are gettting on and what things you find unhelpful and also helpful. We need to get a real dialogue going on this.
I agree with you entirely that women are not educated at all regarding their vulva…I was diagnosed with VIN3 two years ago and after a partial vulvectomy which took a while to heal I am now facing a second operation 2 years later.
I was 48 when I first got diagnosed… And I was horrified to discover that nobody I spoke to had any idea what I was talking about!
My surgeon who is a specialist in the vulva told me that 70 per cent of woman have the HPV virus and may never have a problem but for the rest of us that are suffering there is very little information to help us.
Unfortunately I am a smoker which I know does not help at all so I shall be trying to conquer this in 2012. In the meantime I just wish this was made more public…after my operation I contacted a tv doctor hoping he would invite me onto the breakfast show he appears on to talk about this but all I got was a standard per typed letter thanking me for my email.
I am hoping to write a book about my experiences but in the meantime wish anyone else suffering with VIN ..the help and treatment they need….and good health afterwards.
X
I am 59 and was diagnosed with VIN I and II about five years ago. I have been devastated by the inability to have sex with my husband and the fear of cancer. I have a yearly smear test when the doctor has a perfunctory look at the area affected and sends me away with anaesthetising creams. Any pressure any the area is very painful and creams do not work, not to mention the inadvisability of aggravating the area. The websites are full of devastating descriptions of surgery, and the word Imiquimod has been met with vague shaking of heads from my Doctors. I feel there is virtually no help or understanding out there in the medical world and I have lost the woman I used to be. It is essential that more research is done as this condition is on the increase and women need more protection from this time bomb. I wonder if there are more women who feel as rejected and helpless as I do. Thanks for listening.
Kathryn, thank you for sharing here so honestly and bravely. Everything you say resonates with me and even though I do not have VIN but another vulva condition that can become pre-malignant, I have listened to women on the VHAC helpline for many years now. I wish to make more awareness to try to bring more interest in this subject and more research and clarity for patients.
I am 36 and was diagnosed with VIN III end of October 2011. I went to my GP in Feb 2010 complaining of itchiness and warty looking skin on the vulvar area. My GP gave me some wart cream which did nothing. In May I had a coil fitted which meant 2 examinations during both of these I highlighted the areas that were becoming increasingly warty, raised and White areas covering a large area on both sides of the vulvar. Again, nothing was sorted. It was only when my mum and I were discussing this that she told me she had been suffered with a lot of pain in the same area. She went to see a consultant and after many biopsies she was diagnosed with vulvar cancer. She had a procedure which took away an extremely large area of the vulvar including the clitoris. After this i returned to my GP now becoming very concerned, my GP did not even examine me and just told me to go to a local walk GUM clinic!!!!!! Even knowing my mothers history. The doctors at the walk
in centre were excellent they took 2 punch biopsies there and then, the results should extensive VIN III. I was referred to a consultant who in turn arranged for excisions – I was put on a urgent list and was in hospital 5 days after the consultation. The surgeon who undertook the surgery did not take enough away and VIN III appeared at the edges of all the biopsies taken. I honestly know that the surgeon did not follow the instruction from the consultant as the he drew what the excisions would look like and it was nothing like what the surgeon did. The surgeon called me 2 weeks after the surgery and told me everything was fine and that I should just monitor myself in the future. 2weeks later I received a call from the hospital with an appointment to see the consultant, during this appointment I was told I need a further larger or lecher and the surgery had not removed enough! I am now recovering well and have had the results which states that VIN III has again gone to the edges of all the excisions taken, however, there is no longer any visual VIN III present and I have to attend regular check ups every 6 months. I am still really concerned as clearly VIN III is still present but nothing more is being done, and with my muM having cancer it is even more worrying as it may be more likely that mine will turn into cancer. On a very very bright side, my mum has been given the all clear and she also has to be seen every 3 months. I would really appreciate any advice on the fact that they have stated VIN III is still present and is this ok given family history?
I have very recently undergone surgery for VIN 3. I am 42 non smoker. I had previously suffered what I believed were warts – being 4 years ago and 2 years I had them frozen at the local GUM clinic but no regular follow ups.
I went to see my GP in November to ask for a cream to help them disappear, whilst taking a look she then referred me to have a biopsy, then 3 weeks later it came back to read pre-cancerous cells nothing more, then I went to the hospital beginning of January to be told I had VIN 3, and very little information other than what I researched myself via Macmillan.
I went in for sugery at the end of January. I am now resting at home however struggling daily with sore stitches and pain when I go to the toilet which is causing me great stress. My immune system feels very weak, could anyone recommend a remedy to help me build up my immune system, I am due to go back to work within the next week so would really appreciate any guidance.
I was diagnosed with VIN 2-3 after a painful punch biopsy. Luckily I had stopped smoking in January before I knew I had this. I think the stress of knowing would have made it harder. I’m 52 and had never heard of this type of pre-cancer condition. I think we need to promote education about the causes, and educate young women that smoking not only can effect the lungs, but virtually every part of your body. When I went for my pre-op EKG and chest x-ray today, I found out I have an irregular heart beat and have to have a nuclear stress test before they will even do the the excision surgery. I had to stop reading all the horror stories on the internet about Vulvectomies, because that is adding to my stress! I wish doctors, researchers, scientists, etcs, would come up with just the facts about this disease. My surgery is in May, so I’ll post again after it’s done.
Thank you for a place to post my concerns. And best of luck and prayers to all women who must go through this. I’m in the US.
Greetings Liz. Hoping all will go well with your surgery next month. Feel free to post here at any time and also if you would like to you can find us on a Facebook page as well using this link, you will need to request membership. https://www.facebook.com/groups/245538888840656/