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Old 04-27-2008, 03:16 AM   #1
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Question CIN 3 and now VIN 3

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

Last edited by mod_007; 04-27-2008 at 06:38 PM. Reason: Not editted this time, but please refer to abbreviation sticky for future posts

 
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Old 04-27-2008, 10:43 AM   #2
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Re: CIN 3 and now VIN 3

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!

 
Old 04-27-2008, 03:57 PM   #3
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Re: CIN 3 and now VIN 3

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

Last edited by mandy14; 04-27-2008 at 04:22 PM. Reason: VIN is the same as CIN, only its affecting your vulva not cervix.

 
Old 04-27-2008, 04:29 PM   #4
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Re: CIN 3 and now VIN 3

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

 
Old 04-27-2008, 05:09 PM   #5
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Re: CIN 3 and now VIN 3

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?

 
Old 04-27-2008, 07:49 PM   #6
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Re: CIN 3 and now VIN 3

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

 
Old 04-28-2008, 05:16 PM   #7
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Re: CIN 3 and now VIN 3

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!

 
Old 05-09-2008, 07:26 PM   #8
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Re: CIN 3 and now VIN 3

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!

 
Old 05-13-2008, 02:54 PM   #9
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Re: CIN 3 and now VIN 3

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.

 
Old 05-13-2008, 10:37 PM   #10
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Re: CIN 3 and now VIN 3

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.
All the best
Mandy

 
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Old 05-14-2008, 04:28 PM   #11
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Re: CIN 3 and now VIN 3

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.

 
Old 05-14-2008, 08:21 PM   #12
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Re: CIN 3 and now VIN 3

Quote:
Originally Posted by brieaukirsch View Post
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 [url]http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Vulval_conditions?OpenDocument[/url] 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

Last edited by mandy14; 05-14-2008 at 08:22 PM.

 
Old 05-15-2008, 06:16 AM   #13
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Re: CIN 3 and now VIN 3

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?

 
Old 05-16-2008, 02:32 AM   #14
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Re: CIN 3 and now VIN 3

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.

 
Old 05-16-2008, 02:19 PM   #15
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Re: CIN 3 and now VIN 3

Quote:
Originally Posted by ohio75 View Post
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.

Last edited by nicci70; 05-16-2008 at 02:20 PM.

 
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