VIN 3 frustration

I want to share my story and maybe get some feedback/info about what I am going through.

I am 29 years old with 3 kids and I have a history of gyno problems. Nothing too severe, just ovarian cysts, endometriosis, adhesions, and adenomyosis. I had a complete hysterectomy in 2007 and even though my ovaries are full of cysts they left them due to my age. Two years went by and I finally decided to have an annual because I was in a lot of pain again and some bleeding( which I shouldn't have since I have no uterus). The doctor decided to do a laparoscopy to find out if I had adhesions again. During the exam she found a white spot on my vulva and did a biopsy, telling me she thought I had warts. I was freaked out because who wants to find out they have warts 5 years into their marriage? Not to mention my husband is in the military and as much as we try not to, we do worry when they are deployed....Anyways, the biopsy came back as VIN 3. I had no idea what VIN was!! That same day my PAP came back abnormal and they told me I had HPV. What a whirlwind I felt like I was in! My husband was deployed at the time so I couldn't even talk to him until he called me. To be honest I felt relieved that it wasn't warts, but little did I know how emotional and scary this ordeal was going to be.

The doctor did a colposcopy and found more lesions than were visible and told me I had to have an excision and that they would do it at the same time as my laparoscopy. So, a couple weeks later, after getting my husband home on emergency leave, I had my surgery. They removed some of my labia, perineum, an adhesion that had develpoed from the scar from my hysterectomy, and a decent sized cyst on one of my ovaries.  I recovered nicely, but couldn't walk or sit properly for about 6 weeks.

My frustration with my doctor started at my post op, when she told me that she did NOT get clear margins...on purpose!! I asked why and she told me she wants me to be able to have sex. Then she looked at me and said "Well, I guess you can't have sex if you're dead though, so we'll keep an eye on it and hopefully your immune system will kick in and take care of it for us." WHY DIDN"T SHE TELL ME THIS BEFORE THE SURGERY?!?! She scheduled an appt for another colposcopy 6 months later and told me I have to quit smoking. As some of you know, it is not easy to quit smoking when you are dealing with the stress of this even though you know you should.

So, here I am, 4 months later. I have been doing self exams about once a month since my surgery and a month ago found a couple more lesions. I called the doctor and they told me I need to be seen right away. Their version of right away means 3 weeks. So I am waiting...my appt is on Nov. 3rd. The white lesions that I see are spreading and I am scared. What are they going to find? Could it be cancer now? The doctor told me that it won't become invasive for atleast 5 years, but they don't even know how long I have had VIN since it had been over 2 years since I had an exam and they could have missed it then. And just because they say it could take 5 years doesn't mean it will for everyone right? I am starting to wonder if I should have been referred to an oncologist because it soesn't seem like my doctor knows a whole lot about VIN even though she's a gyno specialist.

I am just very scared and frustrated and would like to hear real things from real women who have or are going through the same thing. Thanks for taking the time to read my story....

PLEASE get to a gynecological oncologist ASAP! VIN does not always progress to cancer, but it can still cause a lot of problems. You can have HPV, but not have the warts, so that is good, but to purposely not take enough tissue to get a clear margin is totally unacceptable in my book. While intimacy is important, it is not the 'end all' of our life, you have young kids and I think being around for them, whether you can have sex or not is more important.

I had a radical vulvectomy for vulvar cancer in Jan., I lost 3/4 of one side of vulva, and 1/2 labia, I also had 5 1/2 weeks radiation, and while it was a challenge, my husband and I have been able to have intimacy again.It takes a little work, and there are doctors out there that specialize in these issues, so please ask more questions , get a new doctor, or ask for a second opinion. You desreve to be heard and to be informed.

I do understand the frustration, my particular type of vulvar cancer was a rare one, it affects less than 1% of women with vulvar cancer, and it usually affects women in their 70-80's, I was 55, so statistics do not always stay in their place, anyone can at anytime become a 'new' statistic.

I wish you the best, please post again, or privte reply so I know how you are doing. My thoughts are with you.

I did forget to mention one thing...the encouragement to quit smoking is really important. Vulvar cancer can be exacerbated by smoking...because the nicotine passes through the urine. I know it is hard, with all the stress, but you can do it. I was a smoker years ago, so I do understand how hard it is. Please consider it.

I also had a radical vulvectomy back in 04/2009.  Mine had spread and I had to have 1/2 of my vagina removed as well. It is literally impossible to have sex at this point.  My husband has been wonderful and says he's just happy I'm here!  The radiation almost did me in!  I would love to speak with someone who's been there!  My legs are starting to bother me now, I'm sure it is lymphodema and will be seeing the Dr soon.  Advice???

Thank you for the reply. It is nice to hear from someone who can relate, although your condition is much more severe than mine so far. I'm sorry for what you have gone through. I'm sorry that anyone has to go through anything like this. I feel that I would be more comfortable with breast cancer because the treatments are so much more advanced! It's tough having something that about the only option for treatment is surgery. My appt. is getting closer, just 3 days and I am scared, but want to know how bad it has gotten! I will update after my appt.

While I did not have involvement with my vagina, I understand the frustration relating to intimacy issues. I was recommended by gyn/onco to see a women's health specialist, she deals with women that have had cancer and treatments for cancer and the many issues that encompass that. She prescribed a bio-identical estogen type gel to use with dilator to keep vagina open and the tissues supple. The side effect from pelvic radiation is that it dries up vaginal membranes and causes atrophy, this can be corrected. It does take a bit of work and dedication to the routine, but it should be possible. I would ask your doc for a referral and ask some questions.

I had 5 1/2 weeks of intense pelvic radiation, I had 'wet burns' in the vulvar area, no picnic, but I did over come it, that was back in April. Just recently I have been experiencing pain in the top of my legs, where I received the radiation and while I have no swelling, I know it is from the treatment. I wonder if this will be an ongoing side effect or will it eventually clear up? I am trying to get back to my regular activity level with exercise, I used to walk 3 miles a day, and haven't been able to do that lately. Part of the problem is that at end of Aug. I was diagnosed with thyroid cancer, and had surgery and treatment for that, I also had some bizarre side effects, so I think that has slowed me down.

I sometimes wonder if I will ever feel like my old self again? Maybe not ,so I should try to see the best of what I have now. I too go for a follow up with rad/onco doc in early Dec. for another CT scan, I pray it is clear this time.

If you really think you have lyphodema , I would call doc right away, the sooner that is addressed the better you will recover, there are things they can do for that, but don't wait too long.

I wish you the best, this disease, while it is a rare thing, seems to be cropping up with more frequency, and I think as women we need to bring more awareness to this disease. It is very lonely dealing with something no one has ever heard of.

I went to the doctor today and they did another colposcopy. It showed that the VIN has spread all the way up my left inner labia. She did a biopsy on the worst looking part and said that the rest doesn't look severe, but we will see what the biopsy results say. If it's not severe, they will just keep an eye on it. But if it is severe I will need another excision. I should know next week. I'm keeping my fingers crossed.

Well I got my test resluts back and am left even more frustrated! The doctor can't even take the time to call me and help me understand the biopsy results! She has her nurse call me even after I asked for the doc herself to call. The nurse tells me that although I had VIN3 5 months ago and the colposcopy showed abnormal cells spreading quite alot, the pathologist says there are no abnormal cells, but that it is hyperplasia. The doc wants me to come in on Tues. to discuss the results, but the nurse couldn't answer any of my questions. She just told me, 'I don't know, I'm not a physician.'

Now I am confused...I have HPV which caused VIN3...now I have hyperplasia, but no VIN??? I really think I need a second opinion, but I have military insurance and no PCP. It could take months to get another opinion! I don't know what to do.

Well I got my test results back and am left even more frustrated! The doctor can't even take the time to call me and help me understand the biopsy results! She has her nurse call me even after I asked for the doc herself to call. The nurse tells me that although I had VIN3 5 months ago and the colposcopy showed abnormal cells spreading quite alot, the pathologist says there are no abnormal cells, but that it is hyperplasia. The doc wants me to come in on Tues. to discuss the results, but the nurse couldn't answer any of my questions. She just told me, 'I don't know, I'm not a physician.'

Now I am confused...I have HPV which caused VIN3...now I have hyperplasia, but no VIN??? I really think I need a second opinion, but I have military insurance and no PCP. It could take months to get another opinion! I don't know what to do.