Vulval Intraepithelial Neoplasia (VIN)

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

Images of VIN http://dermnetnz.org/site-age-specific/vin-imgs.html

Trial of new cream to treat VIN

21 Responses to Vulval Intraepithelial Neoplasia (VIN)

  1. natalie November 22, 2011 at 7:06 pm #

    hey i need to know more about this pls cause its new to me to that i have it about 5months ago.ths.

    • admin January 2, 2012 at 10:14 am #

      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.

  2. Lesley January 2, 2012 at 7:48 am #

    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

  3. Jane January 25, 2012 at 4:45 pm #

    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?

  4. Jo Adams February 18, 2012 at 11:49 pm #

    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.

  5. Liz April 26, 2012 at 2:11 am #

    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.

    • admin April 28, 2012 at 3:23 pm #

      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/

      • Karen June 4, 2012 at 6:46 pm #

        Hi.My name is Karen and I have suffered symptoms for years now (pain, itching, sore, painful when having sex). Last December whilst attempting to have a routine smear I explained there was no way I could have one due to the pain etc so I was referred to a gynae clinic to have a smear under general anaesthetic. Since then everything has been a roller coaster…I was diagnosed with VIN and a small tumour in Jan meaning a second op of a partial vulvectomy in Feb (wide local excision). I have recently been back into hospital again and found there is more VIN 1. The emotional and physical aspects to this disease has been incredibly difficult to handle. I have come to terms that there will be constant ongoing follow ups but the emotional side of things is not so easy to deal with. I am a single mum (44 years old) with a young daughter and can never imagine having a partner. Is there anyone else like me, is there life after a vulvectomy? The constant feeling of despair is soul destroying!

  6. Kay June 12, 2012 at 9:42 pm #

    Hi, my name is Kay, I’m 41, always been a non smoker and am currently recovering from surgery to remove an area of VIN II and another which showed VIN III after biopsies.

    I first noticed some abnormalities when I was pregnant with our second child 5 years ago. I saw my GP who said it was nothing to worry and prescribed some cream. Didn’t bother me again until almost 3 years later when it got progressively worse. Following biopsies being taken I had surgery to remove VIN I/II in Feb 2010.

    Since then I have had regular check ups and biopsies taken which have been okay until earlier this year when unfortunately it raised its ugly head again so to speak and hence surgery again last week.

    I’ve been doing ok but have had a very low day today. I’m not embarrassed by my condition but as many of the other ladies have mentioned its just something that I feel nobody understands unless they have experienced it themselves. I can see people almost wanting to ask me “so how have you caught that?” and as we know you can’t catch it!! I really don’t think women in general are aware of this condition and they should be.

    I’m incredibly concerned about what the future holds for me with regards to this, always wondering how long it will be until it returns again and to what degree. I’ve also had a biopsy taken of the clitorial area which has shown VIN I which is obviously of great concern. My Mum has a history of both breast and ovarian cancer which thankfully she has overcome but I do feel sometimes it is literally only a matter of time for me. To make matters worse I have also recently been diagnosed as being perimenopausal! All good fun !!!

    I was only thinking this evening there must be more awareness of this so it is not such a taboo subject and then I found your website. If nothing else it has made me realise I’m not on my own with this and I’m not a freak or dirty or many other things I have felt at times. I have a wonderful husband who loves me and “my bits!” for who I am and a very supportive family but sometimes you just need to share with people that know exactly what you are on about and have experienced the same issues.

    THANK YOU xx

  7. Paula September 11, 2012 at 6:46 pm #

    I was diagnosed with VIN lll in June this year after many biopsies and the dredged vinegar test I was admitted to hospital just 2 weeks later for partial vulvectomy with laser surgery also, after 3 months and numerous appointments at the hospital I have been told that the report has come back that the surgery was incomplete and I need even more to be taken away, I have also started suffering with extreme pain which it causing me terrible distress when walking and sitting and I don’t know which way to turn, I’m 44 years old and feel like my life has been taken over by this, the only relief I seem to get is when I’m sat in the bath and I’m doing this twice a day.

    I feel for all women who are going through this and wish there was more support and information available. I feel so low at the moment and burst into tears at the slightest thing.

    Good luck to all xxxx

  8. Jane October 2, 2012 at 3:17 pm #

    My doctor just called to tell me that I biopsy shows that I have VIN III. I am frightened.

    I started a new relationship about a year ago. Shortly thereafter I started to get what I thought were yeast infections. I treated them with Monistat and they got better. About four months ago I felt a small lump on my labia. It got a little bigger so I went to my doctor. Now I find out it’s VIN. I’m wondering how long I’ve actually had it.

    The plan is to removed it surgically in a few weeks. What frightens me the most is the possibility that a biopsy of that tissue will show full fledged cancer. My mother died of ovarian cancer. It was pretty awful.

    On the plus side I had several pelvic exams in the last year and the doctor didn’t notice anything until the lump formed. So I’m praying it’s early enough to be confined to a shallow area.

    I am really scared.

  9. Joanna December 17, 2012 at 11:48 pm #

    I was diagnosed with VIN III 2 years ago after finding 2 small lumps on my labia major. I had seen a doctor 2 weeks previously for what I thought was a yeast infection and had pointed out a small abnormality at that time, which was brushed over in favour of prescribing antibiotics, although the practice nurse had raised concerns of a possible wart infection. After the raised blood blister-like lumps arrived I saw my GP immediately and was referred to a gynaecologist within a week, and surgery a week later. Reassuring promptness. Two wide area excisions were done, which healed well and left no disfigurement. Unfortunately examination of the removed tissue found evidence of abnormal cells to all outer edges and depth , so it wasn’t all removed. It also showed as being unclear whether it was in fact VIN III or had developed to Vulval Squamous Cell Carcinoma I(VSCC I). As you can imagine I have felt that I was literally sitting on a time bomb ever since. Sure enough 2 weeks ago I developed a small ulcer in the labia minor region. I couldn’t get hold of the Gynae specialist, and my 6 monthly check up appointment was still 8 weeks away so I saw my GP who emailed a photo of the area to the Gynae clinic, which got me an urgent appointment within a week. (Don’t be put off by receptionists telling you the appointment book is full! You know when it is urgent!). I’m now waiting for the results of a biopsy of this lesion, and meanwhile another has appeared. I was told I would almost certainly be having another excision surgery early in the new year. Also that the HPV that caused this is likely to have been in my body for 10 – 20 yrs, and is incurable. So now I’m thinking how many excisions am I going to have? Am I looking at a Skinning or Radical Vulvectomy in the end? Then what, if the HPV still lurks? I’ve done lots of research on the net and it does seem that Imiquimod would be a better way to go, as it stimultes the bodies immune response, and has been found to eradicate HPV in 58% of cases, as well as shrinking or eradicating tumours. There are also some natural remedies, Dragons blood(?), olive-leaf extract, and a Curcumin-based cream have all shown some promise as anti-virals. Also, yes giving up smoking. I plan to print out the test results of Imiquimod to take along to my next appointment.
    ( http://www.cancer.gov/clinicaltrials/results/summary/2008/vin-imiquimod0408) Specialists are more likely to respect the findings of other specialists. I’m also in touch with my local Gynaecological Cancer Foundation, who advise me that women have better results (i.e. fewer deaths) if in the care of a specialist Gynae-oncologist rather than a plain gynaecologist, as I am. So I need to find one of those! Everything I have read from other womens experiences suggest that being a bit stroppy helps to get the best available care. Good luck to all you women out there with this scarey condition, and try not to let embarrasment add to your difficulties. Kia Kaha and Arohanui

  10. Sarah July 2, 2013 at 11:34 pm #

    Hi, I am a 45 and was told 4 months ago I had developed VIN..despite consultant giving me a leaflet I still searched the net and felt rather numb afterwards. Consultant has arranged to see me in 4 months time, not sure what to expect? I’ve not even had a biopsy so how will you know what stage I am? Does it mean I will have to have treatment?

    Can’t believe I have never heard of this?

    • admin July 3, 2013 at 7:17 am #

      Dear Sarah
      Sorry to hear your news and I agree, this is a frightening condition, that can make a woman feel very alone. There is not enough education or awareness for VIN. It sounds like your doctor is taking the ‘wait and see approach’ . If you do have VIN, you will need treatment at some stage and this will depend on your own case and the views of your doctor. I have no idea where you are in the world but do feel free to mail me privately and in strictest confidence at admin@lichensclerosus.org and I will he happy to try and help.

  11. Sarah July 4, 2013 at 11:31 pm #

    Thank you for replying back so soon. Consultant told me it’s stage one and will probably need an op if it gets worse? He said there is no cure? So does that mean it will get worse or could it stay at stage one for the rest of my life.

    Your right, there appears to be no warning about this disease and my friends have never heard of vin? My consultant has arranged to see me in 6 months to see any changes as it’ still the same on changes
    Sarah

    • admin July 5, 2013 at 3:08 pm #

      Hi Sarah. It is hard to tell and to give a prognosis. It can develop in some people and is much slower in others. Sometimes, in the UK, the doctors offer a cream to help remove the abnormal cells, it is called Aldara, perhaps your Consultant may consider this for you, but you could ask. If you have any uncomfortable symptoms, then 6 months is a long time to wait and there are things that can be done to help calm symptoms down. Friends and family usually find this hard to understand, but in truth there are many things in the World that we never hear about or do not know of, the important thing is that they support you and try to understand how hard it is to have something nobody has ever heard of. Please do not ever feel alone with this, there is a real community of women on the internet that can be contacted at any time you feel the need.

  12. Limbs August 16, 2013 at 10:11 pm #

    Hi,I have recently been diagnosed with vin ll,I’m so happy to fine a site where someone knows this disease ,I was told I need surgery and I’m freaking out ..i don’t no what to expect.im trying to explain it to my partner but it is difficult …also is it contagious ??? Can he get it if I kiss him since it associated with hpv ?? Thanks I would really appreciated if someone can help ….

  13. Helen September 13, 2013 at 3:20 pm #

    Hi I have had vin for over 6 years now, I have been operated on 5 times to take Vin away. On my 4th opp hydrology showed a progression to C2 I had another opp on Monday to give a larger margin of healthy skin. This is a treble thing to have you feel so alone, But then you find a group like this to help, thank you xx

    Limbs I don’t think it’s catching Hun so your bf will be ok xx

    • admin September 14, 2013 at 1:57 pm #

      Hi Helen, thanks for sharing. No need to feel alone, come join us on the VIN community page at Facebook. The link is on this page. Take care and be well. Fabia

  14. Lortizjames April 8, 2014 at 10:31 pm #

    Hi ,
    I was just diagnosed with VIN 1 a week ago. I’m 39 years old married nonsmoker, no children and have been with my husband for 10 years. I’ve had symptoms for sometime, maybe 4-5 yrs. my symptoms were brushed off as yeast or rash and sometimes the itching would stop on its own and there were no visual symptoms. In the last two years my skin began to change ( labia minora and majora). My GYN performed a punch biopsy thinking it was Lichen, however, it turned out to be pre cancerous. Pre cancerous does not mean cancer, nevertheless, it totally freaked me out! The following week I met with a gynecological oncologist, I have a surgery scheduled within a week to remove the skin and laser. He will then send the skin to a pathologist for final testing. I have found Manuka Honey grade 12 to be soothing for the itch. I’ve been using the honey while I wait for the results and schedule the surgery.
    The doctor said that it manifests randomly, and stress and smoking might be triggers. It’s pretty much a wait and see game. I urge everyone reading to find a great oncologist, who will diagnose, perform surgery and follow up treatment. Since the disease is visual, it’s important that the same person look at the area to confirm healing or any other changes.
    I’ll follow up with this blog after my procedure.
    Remember that you are your only advocate!
    Best of luck

    • admin April 9, 2014 at 11:54 am #

      Hope all goes well for you. It is a good thing you are not a smoker as this is the first thing that any doctor will ask someone to do……..give up smoking and many people find this hard to do. Good luck with your surgery, be well soon and look forward to hearing from you again.

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