VIN III & VaIN III - Young, Scared, Hopeful, Need Guidance and Information

[Kansas79]

I am 28 and four weeks ago I went to my GP to check on a vulvar lesion I had found (could only see 1, but had four if I whipped out a handy mirror). They didn't hurt, itch, etc. I assumed it was genital warts because I knew I had HPV (high risk strain 16 and others I think), courtesy of abnormal paps on the cervix, first diagnosed in 2005 (no sugery has been done yet, the displasia appears low-grade). Although the spots didn't appear like any wart or online pic, the PA said "looks like standard genital warts." I chose to have them removed that day (the shot to numb the area was AWFUL!). Two were sent for analysis (cause there was the risk of this rare cancer, god the irony), upon their return I was told that I had cancer, excision (cutting it out) was the predominant method of treatment (and could result in d*******ion and loss of sexual/reproductive ability), and that an appointment had been made for me with a gynecological oncologist.

I went to a regular gyno (not GP) and was told it was NOT cancer, but precancer, and she was comfortable with my plan to see an gyno onco.

It took 3 weeks to get in to the gyno onco, and basically she did an acid wash, noted the newly identified white areas of abnormal cells, and prescribed me Aldera. Yet, she said that she didn't feel as if she needed to monitor me, and that my regular gyno (the new one I saw in the interm to assuage the panic produced by the PA on the original diagnosis) could handle it. Yet, the gyno didn't feel comfortable with the VIN/VaIN management, but will take over the Cervical issues. I began using Aldera immediately and have had 3 applications so far (M/W/F). I don't have any nasty side affects yet, but am waiting.

My first question: Do I need an oncologist to monitor this? I went from no signs to grade III seemingly overnight (I can only attribute it to major stress from Dec - April) So far the lesions appear to be completely gone. However, since the original diagnosis, but before the oncologist appointment I had a more warty looking spot develop in 2 areas. One is on the hood of my clitoris and I am TERRIFIED! The gyno and GP wouldn't touch it.

I think I can handle just about any eventuality (no personal child bearing, deformity, etc.), but the loss of sexual function at this age, newly married, is the scariest possibility. I enjoy sex, and orgasm via the clitoris, NOT vaginally, despite my best efforts. My second question: How real is the possibility of losing my clitoris?

The oncologist said that she would prefer to be more conservative, especially at my age, hence the Aldera rather than excision/laser. I appreciate that, and will defer to her expertise in this area, but will do whatever to keep myself alive and fully functional (sexually/reproductively)

I could write forever, and have been doing a lot of research. The Aldera looks promising, and I'll take whatever pain/discomfort is necessary to resolve this but I need more guidance. Any experience, advice, etc is VERY welcome!

Specifically, any knowledge of/about the radical procedures vulvectomy/vaginectomy/clitorectomy (sp?), what they entail, when they become necessary, and/or treatment options. Am I over-reacting?

I've toyed with quitting smoking since Feb, but now have completely. Also, adopted yoga. Since this appears to be responsive to the state of the immune system, I'm doing all that I can......more ideas are appreciated!

I'm rambling, have no idea if this post is even coherent, and frankly am just thankful to have this community to come to with questions. Thanks in advance for the sharing and support!

[Pickle Eyes]

Welcome and ((((hugs)))) I don't have any experience with VIN/VaIN. All I can offer is to say get a second opinion from another gyn/oncologist. That might make you feel better. Also, be sure you get copies of your pathology reports.

I wish you the best!

[nicci70]

Originally Posted by Kansas79

I am 28 and four weeks ago I went to my GP to check on a vulvar lesion I had found (could only see 1, but had four if I whipped out a handy mirror). They didn't hurt, itch, etc. I assumed it was genital warts because I knew I had HPV (high risk strain 16 and others I think), courtesy of abnormal paps on the cervix, first diagnosed in 2005 (no sugery has been done yet, the displasia appears low-grade). Although the spots didn't appear like any wart or online pic, the PA said "looks like standard genital warts." I chose to have them removed that day (the shot to numb the area was AWFUL!). Two were sent for analysis (cause there was the risk of this rare cancer, god the irony), upon their return I was told that I had cancer, excision (cutting it out) was the predominant method of treatment (and could result in d*******ion and loss of sexual/reproductive ability), and that an appointment had been made for me with a gynecological oncologist.

I went to a regular gyno (not GP) and was told it was NOT cancer, but precancer, and she was comfortable with my plan to see an gyno onco.

It took 3 weeks to get in to the gyno onco, and basically she did an acid wash, noted the newly identified white areas of abnormal cells, and prescribed me Aldera. Yet, she said that she didn't feel as if she needed to monitor me, and that my regular gyno (the new one I saw in the interm to assuage the panic produced by the PA on the original diagnosis) could handle it. Yet, the gyno didn't feel comfortable with the VIN/VaIN management, but will take over the Cervical issues. I began using Aldera immediately and have had 3 applications so far (M/W/F). I don't have any nasty side affects yet, but am waiting.

My first question: Do I need an oncologist to monitor this? I went from no signs to grade III seemingly overnight (I can only attribute it to major stress from Dec - April) So far the lesions appear to be completely gone. However, since the original diagnosis, but before the oncologist appointment I had a more warty looking spot develop in 2 areas. One is on the hood of my clitoris and I am TERRIFIED! The gyno and GP wouldn't touch it.

I think I can handle just about any eventuality (no personal child bearing, deformity, etc.), but the loss of sexual function at this age, newly married, is the scariest possibility. I enjoy sex, and orgasm via the clitoris, NOT vaginally, despite my best efforts. My second question: How real is the possibility of losing my clitoris?

The oncologist said that she would prefer to be more conservative, especially at my age, hence the Aldera rather than excision/laser. I appreciate that, and will defer to her expertise in this area, but will do whatever to keep myself alive and fully functional (sexually/reproductively)

I could write forever, and have been doing a lot of research. The Aldera looks promising, and I'll take whatever pain/discomfort is necessary to resolve this but I need more guidance. Any experience, advice, etc is VERY welcome!

Specifically, any knowledge of/about the radical procedures vulvectomy/vaginectomy/clitorectomy (sp?), what they entail, when they become necessary, and/or treatment options. Am I over-reacting?

I've toyed with quitting smoking since Feb, but now have completely. Also, adopted yoga. Since this appears to be responsive to the state of the immune system, I'm doing all that I can......more ideas are appreciated!

I'm rambling, have no idea if this post is even coherent, and frankly am just thankful to have this community to come to with questions. Thanks in advance for the sharing and support!

hi kansas so sorry that you are having to deal with this at a young age, i am 37 and was diagnosed with VIN3 in Feb I had exision surgery yesterday, to remove one lesion, however i do have 4 other that the gyno is just going to watch andthe moment, unfortunatley for me the Aldara cream is not suitable due to other skin problems i have, at present i am a little sore but not too much pain.
I can totally understand all your concerns regarding sex, but before anything surgically is needed for you, ensure you speak with your gyne and have him fully explained what is going to be needed. Even before I went into theatre yesterday i had the doctor explain and he even draw me a picture to fully show me where the lesion was being removed from (labia). I have also found a great VIN support group, which the ladies have lots of knowledge. if you do a search in google you should find it. All the best, thinking of you and hoping you get on ok with the aldara cream. Also well done on giving up smoking that is the best thing you can do to help your immune system, eating healthy and keeping fit all great things.

[nicoleandkaramo]

I had VIN III 5 years ago from the HPV virus. I had it surgically removed. Since I seem to be at the Oncologist office every 6 months. A regular gyno, I believe just doesn't know enough. I now have Lichen Sclerosis. I believe because of the surgery. The treatment is really no big deal but the sense of relief going to the gyno oncologist is worth it. Also, the dr. said that if you make it past 3 years without it coming back there's a good chance it won't. So my answer to your question is YES YES YES have your Oncologist watch you. I orginally went back to my regular gyno and he kept giving me biopsys for nothing. Oh by the way, I have been married 20 years and my sex life is just fine......Good luck to you and be in charge of your health..

[Kansas79]

Thanks Nicci, Pickle, and Nicole! Thanks for the feedback and support!

Nicole, I looked up Lichen Sclerosis, I'm so sorry that you have to deal with that! Doesn't it seem like some things are never ending! I just hope its something manageable. I suspect that if we can get through this sort of thing we can make it through anything!

Nicci - good luck with the healing. I don't know how difficult the surgery is as I've only had a biopsy/removal sort of procedure. Atleast I hear that the "vagina/vulva are very resilient areas of the body." So says my doctor! :-) Keep me posted about the other lesions.

So, I'm going to stay with the oncologist, she said she was fine to keep me on. I'm feeling ok about things at this precise moment. I just don't want to be last on her radar because I don't have invasive cancer. I know my situation pales in comparison to what other women are going through, but it's still a big deal to me.

I'm still waiting for the Aldara to kick in. Not that I want pain and irritation, but atleast I'd feel as if its doing something. Famous last words! I know I haven't been on it long, but I think I have a new small lesion. I can't say for sure, as I'm not all that flexible, even with a mirror. :-) I even used to be a gymnist, how times change!

I was wondering if anyone knew how long it took for Aldara to kick in. Also, the original lesions were cut off in biopsy/wart removal mode by a PA.....how different do you think that mentality/practice is from actual excision? I don't have any lesions coming back on those sites (and nothing showed with the acid wash), which I'll take as a good thing, but I hate the idea of bad tissue left behind. Somehow if it's visible I can continue to be mindful, if I look normal I'm afraid I'll slack on the healthy living and it'll all come back or never really go away!

Lastly, I wore a friends bathing suit this weekend, and I felt that I had to remind her to wash the bottoms before wearing it in the future. My doc had mentioned not shaving due to the ability of the HPV to move into a cut. Thus I felt like transmission was a legitimate threat to a female friend. What do you think? Do I need to be aware of those things? Can HPV pass so casually? I know that my hubbie likely has it, and may or may not work it out of his own system, but reinfection wasn't a large threat because if I can beat it off once, the likelihood of a repeat performance is increased. Let me know what yall think.

Thanks for the advice! I appreciate it.

bush woman.......it's my new name, thank goodness my husband is a hippie at heart!