Hi everyone,
I am new on here, only just found the forum, and so glad you are all here. I would like to know if anyone has had VIN?
I had a LLETZ procedure done in January 2004 for CIN 3, and followup smears were clear. I then had a baby in Sept 2006. After the birth, I felt as though I was bruised when I urinated, which the nurse said was a result of the birth. Didn't think much more of it. Had my pap smear in December 2007, all clear. (had not resumed sex at this stage)
But, I got the same feeling after sex. I would be sore for a couple days, then ok again. I would also get an irritating itch some times. Still didn't stress about it though. Then I went for my pap smear in Jan 2008, and mentioned what had happened on and off to my Dr. She couldn't really see anything, except a very small cut/ulcer on my vulva. Referred me to Skin and Cancer clinic. I had a biopsy done which came back VIN. Then referred to a Gynae Oncologist. Cutting all this a short as possible, I had a wide excision of a lesion and other suspicious areas biopsied on the 21st of this month. I also had another Colp done while under anaesthetic. I get the results on the 2nd of May.
Has anyone had this happen to them? I was told that you are at higher risk if you have had CIN 3 etc. No one told me this could happen. I had no idea that having a smear would not pick up cell changes on your vulva. The biggest lesson I have learnt from this, is make sure your Dr always checks your vulva too when you have your pap smear. Evidently they can sometimes detect small skin changes. Make sure you look too.
Mandy

Mandy, I don't know much about VIN3, so I am of no help. So I am just popping in here to say I wish you peace, understanding, and health!

Thank you for your reply Pickle Eyes, and your thoughts.
I just hope that everyone that reads my post, will become aware of VIN. If anyone has tested positive to the HPV DNA, then you are at risk. There are other reasons that you may get VIN, but having CIN is a reason to watch and be aware. VIN is like CIN, and can turn to cancer. Some women have to have a vulvectomy, which is the removal of their vulva or worse. I dont want to scare anyone, I just want everyone to know about it.
I'm feeling pretty sore and sorry at the moment, very hard to sit, and walk with all the stiches. But I am thankful it has been caught before it got worse. Obviously I get results of the biopsies on Friday, but I am thinking positive that I wont need anymore surgery.
I wish everyone on the message board health and peace.

Mandy14

Hi Mandy,

I have never heard of VIN 3. I am currently at CIN 3 and am only beginning this process. What is VIN 3?

Good luck. I am glad you found us....these women are great and very supportive. Let us know on May 2nd.

Many hugs

Mandy, thank you for the information on VIN. I had seen it, but it was early in my research (only a month or two ago).

Steph, what procedures have you already had?

Hi Steph
In answer to your question, VIN is the same cell changes that happen to your cervix but only it is happening to your vulva. Hence the V instead of the C. When I had CIN 3 and a LLETZ procedure(similar to LEEP I think), I had no idea that just because my smears were clear from then on that I wasn't in the all clear zone.
To be honest, I was blown away when I was told that my first biopsy came back VIN. I didn't know anything about it. I had this done under local anaesthetic (ouch to say the least).
The same solution that they use (vinegar/?) on your cervix when doing a colpo, is used on your vulva to pick up cell changes. I highly recommend all women who have had CIN to ask their Dr to do this. Some women don't pick up there is a problem until it has reached Cancer and sometimes too late. Just doing swabs of the vulva will not pick up these changes.
I beg each of you, to not overlook your vulva. One other thing my Gynae Oncologist told me, is that they see more VIN in women who smoke. I don't and never have. I was also told that I will be seeing him every 6 months for the rest of my life. So I cant go back to my usual Dr, as it needs to be followed by someone who is a specialist with cancer. I was terrified of CIN, but even more scared of VIN.
I feel awful if I am scaring any of you, but I also want to warn you all what to be aware of.
xx Mandy

Mandy, I just wanted to post here to tell you thank you for replying to one of my previous posts, your concern was very much appreciated. Yes, I already had my cone biopsy I'm doing okay except for having to wait for the results of it. I'm sorry about all that you are having to go through, and I wish I had something to post in response to your original post, but unfortunately I don't, but for what it's worth doll, I wish you well, as I wish everyone else well, on their journeys through the things everyone wishes they would never have to go through. Good Luck!

Mandy, how long did it take for the acetowhite on the vulva to show when your doctor did the acetic acid wash? The last time I saw my gyn, I asked for that wash, and it was over in 5 seconds. He said he didn't see anything except extreme dryness and cracked skin, but I've read it sometimes takes 3-5 minutes for the vinegar to soak and any lesions to show. He definitely did not have 5 minutes to sit and wait with me. Also, did you get the final path results? Did I read you right in that the actual results showed "just" active HPV infection but not high grade vulva dysplasia? Thanks in advance!

Hi Mandy. If you don't mind me asking, how old are you? I am 32. I had VIN 3 removed in 2006 and was fine until aabout 3 wks ago. My scar was hurting and when I had a look it appears to have a "cut" like area. I had a biopsy this week and it was VIN 2. I am of course very disappointed and upset but going through surgery for the second time in June for this. My doctor is referring me to a specialist just to make sure everything is being done that is necessary.
The reason I asked your age is because he said this is very rare( mine was not hpv related ) and it is usually those over 70 years. I feel very alone in this and pray it doesn't return.

I appreciate any feedback from other women who have had this happen to them.

Also, reguarding the last post-I do think it take s a few minutes so I would have it repeated to be safe.

Hi I'm sorry it's taken a little while to reply, but amongst other things, found a lump in my breast and had to go for mammogram etc. Thankfully it seems it is a ridge of tissue. I'm also suffering a broken nose:( As they say, it never rains but pours sometimes.:)
It was a few minutes at least before my Dr could see for certain any changes with the wash. I would ask for a repeat. He did say it starts to show almost immediately, but not clear enough for it to be over in seconds.
I'm 40. I still cannot see any HPV even though Dr said that is what is left. As he said it is a very sneaky virus. The only way they can tell if it is HPV is by doing a biopsy. Unless you have very obvious changes.(I had had a HPV DNA test in January, it came back negative)(this is only done internally)I was also told that little splits/cuts etc can be a hint that VIN may be present. I had a little cut (ulcer), which caused pain. This was the first I knew of anything not right.
I have been told that I am in the 2 % of women who have CIN then VIN, and whom don't smoke. In his words, very unlucky. It also has a habit of reoccuring. I am taking multi vitamins, and going to have the Cervarix vaccination. I am also going to see a Natropath, anything that may help my body fight this virus. My Dr said, it will not hurt to try everything, as long as it's not harmful. Mentally it is a challenge to not have any stress, as they say this is sometimes what triggers it to change. Its like it just hides and waits till the conditions are right. I say good luck to you in fighting this awful thing and wish you good health.
And if your not happy with your Dr, please don't hesitate to get another opinion, it is your health and body.:angel:
All the best
Mandy

Mandy and ohio, thank you for you replies.

Can I ask how many lesions you had and where each was located?

I am demanding an acid wash repeat as I have had itching, pain, tenderness for a year, and now a visible lesion on the inner left labia on/near the fold. THREE doctors, including a gyn-onco, missed the lesion! I bet it's HPV but I don't know what degree of dysplasia.

Mandy and ohio, thank you for you replies.

Can I ask how many lesions you had and where each was located?

I am demanding an acid wash repeat as I have had itching, pain, tenderness for a year, and now a visible lesion on the inner left labia on/near the fold. THREE doctors, including a gyn-onco, missed the lesion! I bet it's HPV but I don't know what degree of dysplasia.

The initial lesion (small ulcer) was located towards the front right in the middle. It didn't feel like an ulcer. What I felt was, like a bruised feeling. It also would happen during and after sex for a couple of days. It would be very tender when weeing. The itching would be off and on. When it itched, it was terrible. I had this for a year too, cause it kept feeling like it got better. I could not see the ulcer. I saw a Dermatologist (skin and cancer clinic) first, as you can get several different kinds of skin infections on you vulva. She did the first biopsy, and was very suprised it came back VIN as I had no obvious signs. I was then referred on to the Gynae Onc. He did the wash, and said he could see 3 areas. One especially looked high grade and the other 2 looked suspicious. The main area was on the left, in between the labia maj and min. He removed a large area, and now they are almost joined. Suspicious areas were biopsied, one towards back, same side of large excision, the other was more inside entrance to vagina on the right side.
I would definately get another opinion, because you could even be suffering another condition that still needs attention.
Lichen sclerosus or Lichen planus could be other conditions. They are explained on the http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Vulval_conditions?OpenDocument site.
Regardless, if they don't look properly, they will not detect it. Make sure the Dr knows what they are looking for, and have experience.
I'm sorry you are having such a hard time getting a proper evaluation. Good luck, keep me posted. I hope I've helped in some way.
Mandy

Mandy, thanks for your info and sorry for all these questions. I've had a heck of a time getting anyone to listen to me/my symptoms, and that 5 second vinegar wash didn't even alert my gyn-onco to the lesion! I know it's been there for a year because I've had these symptoms for at least that long. It's hard to see unless you peel the skin flat, but it is almost the size of my pinky finger nail, so not exactly small. I also know it coincided with initial infection so VIN is the only thing that makes sense, given my hx of cervical dysplasia, and the fact I had absolutely ZERO gyn problems my entire life until infected.

The main lesion you mentioned, was that at the top or towards the bottom (entrance)?

Were they in the vestibule or on the outside skin parts or perineum or all over the place? I know it's commonly multifocal and that's what worries me--that they missed lots of places.

Has your gyn-onco talked to you about Aldara?

Thats fine with the questions, ask away. The main area was from the vestibule to the outer on an angle running towards the front. If I could draw it, it would be much easier. Really speaking, including the areas biopsied, its multifocal. I honestly cannot or could not see it just by looking, not obvious at all. So if you can see an area, then I would definately be pushing for another opinion.
Yes my Gynae has talked to me about the Aldara, but he said he thought we should wait till my next app, to see how things look. Especially cause of just having the surgery and stiches, it was not something he wanted me to use yet. I am still not 100% healed, and the surgery was the 21st of April. I feel comfortable with this wait, as he seemed very thorough.
So until then, I'm trying to be stress free:) and adding vitamins to my diet.
Who knows. Worth trying almost anything.

Hi Mandy. If you don't mind me asking, how old are you? I am 32. I had VIN 3 removed in 2006 and was fine until aabout 3 wks ago. My scar was hurting and when I had a look it appears to have a "cut" like area. I had a biopsy this week and it was VIN 2. I am of course very disappointed and upset but going through surgery for the second time in June for this. My doctor is referring me to a specialist just to make sure everything is being done that is necessary.
The reason I asked your age is because he said this is very rare( mine was not hpv related ) and it is usually those over 70 years. I feel very alone in this and pray it doesn't return.

I appreciate any feedback from other women who have had this happen to them.

Also, reguarding the last post-I do think it take s a few minutes so I would have it repeated to be safe.
Hi OHIO, i was also diagnosed with VIN 3 in February and are having surgery on 29th MAY, i am 37, all pap tests have been negative, I have been having various problems since last June and the doctor finally decided to do biospy in FEB which came back as VIN 3. I am sorry that you are having to go through this procedure again. I know we are not supposed to quote other sites, but I have found a great support group just for VIN diagnoses it is very good, do a search via yahoo. Thoughts and prayers with you.

I am 25 and had a normal pap in the beginning of the year but found a lesion about a month ago. My gyn told me it was nothing to worry about and that I didn't have to worry about passing anything along to others. I asked that he biopsy the lesion anyway. During the time spent waiting for the biopsy results I began a new relationship. The results came back VIN III. I'm not worried about myself or dealing with the issue, but I am terrified about passing it on to my new partner, especially since the oncologist said that it might really be a condyloma that was misdiagnosed. For those with VIN III, did your partner show any symptoms? Has anyone had a condyloma and has it spread to your partner? Also, I am scheduled for an excision in a few weeks. Can anyone give me an idea of what to expect during recovery? How many days should I take off work?

Hello there, I am new to these boards and noticed that the VIN3 posts are several months old, so wondering if people are still out there?

I'm wondering how the earlier posters have done since their surgeries... I had laser surgery to remove VIN3 two months ago (one area on labia and another on perineum, I'm 31, history of HPV, and by the way it took 3 years for me to find someone willing to biopsy the stupid area!).

The area on the labia has healed nicely but the perineum keeps tearing. Doctor has prescribed steroidal (testosterone) cream but does not seem to be doing anything yet. Does anyone have any thoughts to share, or ideas for helping the perineal wound to heal? This has been such a terribly scary experience I'm glad to read I'm not entirely alone...

Hi Sunny! I didn't have VIN, but wanted to jump in and say Hi. I know that Brieaukirsch still comes around. She'll probably check in in the next week or so. don't know about the other ladies.

Take care! :)

Hi sunny80, I am sorry to hear about what you've been through. I had noticed some changes a couple of years ago but thought it was nothing and then last year mentioned it during annual exam (they should have noticed it the year before but she didn't check me over, only did quick pap) and my primary care doc referred me to gynecology. (I've never had abnormal pap) They examined and said I needed a biopsy, went in for biopsy and VIN III. 6 mo. checkup acid test and no abnormal areas----6 months later abnormal area found and biopsied (again VIN III) now referred to Gyn/Oncologist for further examinations and possibly treatments. Anyhow it's all very scary to have the vulva/labia area affected seems harder because of areas being cut on and removed. I can't seem to find a lot of information on HPV affecting the vulva area. I do not have any recommendations but hope you do find something that works! Keep us posted.

Hi, I am sorry about the perineal tears, I know that is one painful place to split. How about vitamin E or some sort of petroleum jelly at night all night? Also, I know that vitamin D strengths the skin and immunity, but I have no idea how to get a topical vitamin D. For symptomatic relief, Lidocaine. But I know you are wanting something to address the problem not just mask symptoms. What does your gyn-onc say?

I hate to even suggest this because you are dealing with so much, but have you been tested for hsv2? (genital herpes) Turns out that's what I'm dealing with but it may not be the only thing, and you don't want to know how many gyns I saw and how many times I saw them before one of them took pity on me and demanded an hsv panel. I also presented with the pain, the perineal tearing, but no obvious lesions. My genital issues are so out of control, I literally cannot have intercourse anymore.

I STILL have not been able to get that spot on my left labia biopsied. I know this isn't the smartest approach but I have basically given up and pretended the discolored patch doesn't exist because no one will listen to me. I have a CKC consult coming up (but trying to talk him into a laser/LEEP combo instead), and maybe he will do another acid wash.................this time for LONGER than the 3 seconds my gyn-onc did.

Hi brieaukirsch, I'm sorry that you continue to have problems. I saw where you said that you had discolored areas on your labia, I have a few areas on both sides like that. I was referred to Onc/GYN and hoping he can give me insight to why it is there. It's frustrating to have doctors dismiss concerns we have, sometimes I feel like it is because they are unsure and uneducated on our situations. Best wishes and take care.

During the past 21 years, I have had CIN (cervical intraepithelial neoplasia), VIN (vulvar intraepithelial neoplasia), VAIN (Vaginal intraepithealial neplasia, and AIN (anal intraepithelial neoplasia.

I am quite alarmed when you said your doctor prescibed steroid cream. Steroids, even topically depress the immune system. The last thing you want when you have HPV is to depress your immune system.

I was scheduled for removal of a VIN lesion in 1991 when I found out I was pregnant so we postponed the surgery until after I delivered. I had bad hemorrhoids and a GI doc prescribed a steroidal cream which actually accelerated the HPV contained within the hemorrhoidal tissue to a full blown invasive squamous cell carcinoma. This required anal resection externally, radiation therapy and chemo.

I still find that a lot of docs aren't very "up" on HPV. I certainly would question this steroidal use and if it were me, I would never use it even if the doc said I should. Experience is the best teacher and after 21 years I feel more confident in my knowledge of what's going on than the docs (except for one).

All of my areas of involvement were either 2 or 3 (graded 1, 2 and 3). Diagnosis of a 3 is equivalent to the cancer staging of a T0 (zero) lesion or "in situ" meaning in place without invasion.

As for your question on removal of the VIN lesion I've had so many VIN lesions removed I've lost count. Finally, because I kept having recurrences the decision was made to do a partial vulvectomy. About two inches of vulvar tissue was resected on each side and the sutures were placed in the crease/fold area so you cannot see it. After that procedure and the resection etc mentioned above which were all done at the same time in 1991 I had a few tiny recurrences but nothing significant. Then in 2006 after fifteen years with no problems I was diagnosed with AIN3. This was treated with CO2 laser. Two months ago I went to the doctor because I found an internal rectal lesion now. This gets problematic because we're not talking about external skin tissue anymore (squamous cell) and this drastically changes the potential outcome (adenocarcinoma).

Hi, I have not been on here before just woke up this morning and really wanted someone to understand what is going on with me. I was diagnosed with VIN 3 about four months ago and then yesterday told that I also have CIN 2. This dianosis was after around about two years of random suggestions of what was causing discomfort from thrush to excema to I'm not sure what else and treatments which ranged from diflucan to wash less to steroid creams in a number of forms.

I have been treating with Aldera cream for 16 weeks and feel like there is not a light at the end of the tunnel. I have an extremely supportive partner who keeps trying to get me to remain positive etc etc but I think what I struggle with the most is that it is not talked about and that makes me feel very alone. Until today I had carried on as normal reduced my hours slightly at work (I work in a very stressful very male environment) and probably been less active but over the last week I have found myself inconsolable over the slightest thing. I reposted sick today and came on line in an attempt to seek support but half of what I read scares me more than not knowing anything. I have a follow up apointment on the 28th Oct and I am so scared she is just going to say I have to carry on with the aldera. I do not know if I show try and do less, not get stressed etc as there is so little information out there. I go to my GP and they just look at me blankly and refer to the letter from the consultant saying I can ave any drugs I want. When I go and see the specialist she is so matter of fact that I feel like a baby for getting upset or struggling.

Sorry to go on just hoped someone out there can share some experiences that may make me feel a bit more positive. :(

Hi smileygirl, I came to the boards for the same reason----support and to learn from others experiences. It is all overwhelming and there is nothing wrong with getting upset or crying (I did and still do cry at some of my appointments) because HPV is so unpredictable. Don't be scared by what you are reading, it is just people wanting to share their stories and helping others learn through them. So think of it that way and not as being negative because that is not what people are trying to do. It is extremely important to be aware that there are many, many different scenarios and to be vigilant with regular exams. Like you my partner is very supportive but does not like to have in depth discussions about HPV. I was also told I have VIN III and am glad I found these boards, I was scared and an emotional wreck but there are great people here who we can learn a lot from. The most important thing for you to do is keep your immune system strong; healthy diet, excercise, no smoking (or cut way back), it was recommended vitamins with folic acid, and try to keep stress levels low (I know easier said than done). You do not have to cut back on activity unless advised by your doctor or you are physically limited. Have you had any biopsies done? I wish you well.