V.I.N. treatment questions

[candy-can-write.livejournal.com]

Hi all

I have just found out that I have V.I.N. as a result of HPV which I contracted from being raped several years ago.  I am emotionally devastated by this as I've had such a difficult time dealing with the rape over the years and now to be told this is just so upsetting.  
I am trying to be as educated as I can be about the disease and am on a quest to find other people that have had treatment for it.  
Some questions I have are:
Did you go to a Gynecological Oncologist for treatment?
What kind of treatment did you have?
Did you lose any sexual function (clitoral sensation)?
Did it come back?

I should also tell you that I have been told that it is very rare that a women my age (32) have this and apparently the strain of HPV that I have is also rare with only 5% of cases being of this strain.  I have no warts or growths, the only reason I went to the doctor was because I had such severe, intense burning of the vulva, clitoris and entrance to the vagina that I couldnt stand it anymore.  

My case is also complicated by the fact that I have Multiple Sclerosis and because of that, my immune system is already not working correctly.

Any advise would be great.  



Thank you

Comments

[edge-ofthe-sea.livejournal.com]

I'm not a mod, but as a rape survivor myself, I do like the warning that a cut provides.

[candy-can-write.livejournal.com]

You know, I'm also a member at *Survivors* and I know we rely heavily on the cut over there but here, it seems like it's rare to see someone put a cut so I wasnt sure but I will :-)

[edge-ofthe-sea.livejournal.com]

And I wish I knew how to help you. :-(

*safe hugs*

[candy-can-write.livejournal.com]

Thank you for the hugs--I need all I can get right about now!! :-)

[amigone.livejournal.com]

I'm really sorry that you were raped, and have this ongoing reminder of it.
I don't have this vin or any types of gyne trouble, but I work on a gyne oncology surgical unit, and so I want to let you know that people who have had treatment for vulvar cancer (including the pre-cancerous stuff you've got going on) and such, so long as it's caught early, and especially with younger patients, often have a really good survival rate, as well as the least amount of side effects.

[candy-can-write.livejournal.com]

Thanks for commenting. I really do hope that since it was caught early I will be O.K., I'm just worried that my immune system will not be of help in keeping the HPV from causing V.I.N. or worse to re-surface.

[jennifer0246.livejournal.com]

I have not dealt with VIN on a personal level, but have on a professional one. We (being a private GYN office) typically refer to a GYN Oncologist, yes. They are most experienced and best equipped to help you.

[candy-can-write.livejournal.com]

Thanks for the info. I have felt that the Gyn-Onc would be the best place to go but my regular Gyn wanted to treat it himself. When I consulted yet another regular Gyn, that doctor said "Absolutely not, you need to go to an oncologist" I have called and am awaiting a call back for an appointment.

[jennifer0246.livejournal.com]

You know, it's entirely possible that your regular GYN is experienced enough and able to help treat this, but if you have the ability to see a GYN/onc, that would be my recommendation. They will undoubtedly be experienced and able, and that kind of reassurance is very much worth it. Good luck to you.

[starzysky.livejournal.com]

IAWTC x 500 million :)