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Processing Vulval Intraepithelial Neoplasia 3 (VIN 3)


Having a precancerous condition (VIN 3)on my vulva is a strange phenomena. It's a rare so most people aren't aware of it, I certainly wasn't. And let's face it, people rarely talk about women's anatomy such as clitoris, vulva, labia, etc. We focus on breasts and vaginas, usually with odd nicknames rather than actual labels. My personal preference for vagina is "hoo-hah." It's cute with a punch of power and why can't my vagina be cute and powerful? It may not be cute after surgery but I can still pretend.

A handful of family and friends, and YOU, know about my condition. I've been wondering, do I talk about it? Do I wait until I schedule my surgery (the scheduler wasn't in yesterday due to the blizzard on her side of town), after the surgery and my results are in? Or do I keep it to myself and those who already know?  At first I thought if this was breast cancer that would be an easy answer but I don't think that is true either. I imagine that with any illness or disease one faces those same questions. You don't want to burden anyone, you don't want to worry anyone, but you do want support. You also don't want to keep it hidden in case it's worse than they initially thought.

I'm not sure how I feel or what to do. I'm in this odd place of near-disbelief. Part of me is relieved. This is related to the HPV virus. This means that it's not hereditary (except the piece that says, I likely have an underlying autoimmune issue that allowed the HPV to develop) which is great!  It's not like something within me was unleashed and I got cancer. It's that I caught a virus and got the beginnings of cancer. It also means my girls don't need to worry about it (thank goodness for the HPV vaccine!).

Yet, I am afraid that there might be real cancer. The affected area is larger than they first thought. The surgeon said he didn't think there would be actual cancer in the rest of the area but they will send it to the lab to be sure. If there is then we'll go back in to remove more tissue and my lymph nodes and see if there needs to be radiation or chemo. On one hand I want to believe him. On the other hand, I previously heard "I'm sure it's nothing but we'll go ahead and biopsy it."

When Valerie was a baby with some monumentally stubborn jaundice, he doctor said, "I'm sure tomorrow's test will be better" and "It never gets this high" until she was readmitted. Before the next to last blood test she said "I'm not telling you, it won't be worse. Let's just wait and see." Thankfully, at the scare point her levels started coming down. I worry more when told not to worry. I guess, I have some trust issues.

Through this rambling, I've decided to talk about it. All the readings say it's becoming more prevalent so people need to be aware. Sex should NOT be painful--if it is, go to the doctor. For quite some time,  I've had an area in which would often become irritated during sex. I didn't think anything of it. It wasn't the kind of pain that made me cry or stop having sex, but it did make things uncomfortable. That wasn't normal. Apparently, itching is a symptom as well. Thankfully, I didn't have the kind of itching I've read about but there was some a few months ago. I had a sore spot that went from being sore during/after sex to being sore all the time. I finally took a look (used my cell to take a picture and prayed that I didn't accidentally upload it to Facebook!) and discovered a purplish brown spot on my labia near my sore area, that is what they biopsied. The OB/GYN thought it was simply a varicose vein (gross!) on my labia but biopsied it anyway. I was prepared to ask and push if she wasn't going to suggest it. Don't worry about looking like a nut job, you have to advocate and take care of yourself.

I'm scared of being a hypochondriac so I often second guess myself.  I definitely need to stop doing that. Several years ago I was having heart palpitations and assumed it was related to anxiety because it was during midterms. Luckily, I went to the doctor for a sinus infection and they didn't let me leave until I had a Holter monitor. I then went through lots of testing and they put me on meds to help. I now avoid an abundance of caffeine and my heart is healthy. My doctor told me that if it had been an anxiety attack I would have thought I was dying. Because I wasn't freaking out was a good indication, it wasn't anxiety.

Anyway...here's a diagram of what they'll be removing

I appreciate having this place to write and process. I question myself why I choose to do it online in a public forum. I think it's because maybe there will be someone else who stumbles to my blog and wants to talk, wants to process with me. Thanks for "listening."

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