Hi Joy,
There is no doubt in my mind (from talking to other people on this site) that there is no generally accepted management of VAIN by the medical community…. Mainly because it is so rare, there is not enough data on how best to treat it. However, I found this article online and it really helped me understand my own personal risks and helped me to ask the right questions when I saw my oncologist – I think it may help you understand your own condition.
http://www.obgmanagement.com/article_pages.asp?AID=3340&
Interesting point – I noticed the author is a doctor in Florida and your handle is “Fla Girl” – so maybe you could get hooked up with the clinic he works with. I am no expert, but it seems to me that it is VERY important that the doctor you choose to work with actually has significant experience with VAIN (since a lot have never even seen it). If that doctor happens to be an oncologist – so what – as long as the doctor has experience with VAIN.
Also – please know that I am aware that VAIN can turn into cancer and will likely have paps every 4-6 months for the rest of my life to keep a close eye. While I am focusing on the positives of my condition, I have no intention of burying my head in the sand.
So, to answer your question. The Efudex is not a big deal for me. It is easy to apply and painless – although I will emphasize the importance of making sure you get the petroleum jelly all over your vulva/labia and using a cotton ball/tampon so that the cream does not leak out and irritate these sensitive areas. The link that I gave you explains how the treatment usually works. I have also read online and there is a lot of controversy about using 5 FU intravaginally (it is not FDA approved for this use) and there is the potential side affect of creating a vaginal ulcer (10% risk – I’ve read). However, the case studies I’ve read online have convinced me that it will help and after discussing the risks/benefits with my doctor, I have chosen to use it.
I think when you read the above article link, you will discover that some treatment should be done (considering you have HSIL VAIN) – but that you have many options. Since you have been dealing with this for over 10 years – I’m sure you know a lot about your condition and what your body can handle. I would consider all your treatment options and discuss the risks/benefits of each one with your doctor.
I hope I haven’t provided too much unsolicited advice – I am certainly not a doctor, but wanted to share what I have learned in the past 2 months. Please keep in touch and let me know how things progress!
-Stacey