Hi Everybody!
Wow – I haven’t checked the site in a while, but now my next pap is coming up June 7th and I’m thinking about all this stuff again. Last message I wrote (look under the gynecological cancer message board) in February said that I was going to under Efudex to treat my ”LSIL with mild dysplasia, cannot rule out high grade SIL” result from a pap January 4th. Yes, I was also HPV positive.
The first 2 weeks of Efudex went fine. The third week was horribly painful (and I’m not a wimp). I was supposed to take it 2x/week for 6 weeks. I only made it 3 wks because the discharge affected my vulva area (even though I used tons of petroleum jelly to protect it) and peeing became a very painful activity – it was even difficult to sleep it hurt so bad. My hysterectomy was less painful. So, around the beginning of March, I went back to my gynecological oncologist and we decided that since my Efudex treatment was optional anyway, to discontinue. It took 3 weeks after I stopped using it for it to stop hurting. We scheduled a follow up pap for early June and not much has been happening since then.
I have been taking my supplements, eating lots of fruits/veggies, exercising, sleeping well (thanks to melatonin), laying off the alcohol, reducing stress at work, etc. The weather has been so great this spring that I really have been back to my old self (since before this abnormal pap nightmare began in November 2005) and have taken up golfing even.
Couple things I’d like to share: First, I found this great article on VAIN which I really think will help you all with a lot of your questions:
http://www.obgmanagement.com/article_pages.asp?AID=3340&
Second, for all of you who have shame/embarrassment about being HPV positive – stop it right now! HPV is the OLDEST STD in the world. 80% + of the population carries some form of it. It is extremely contagious (condoms won’t prevent it). The reason we ladies are dealing with it is because our immune systems aren’t suppressing it right away. So stop thinking “if only I hadn’t slept with so and so.” You very well could have gotten it from your faithful partner of 25 years. It’s just our immune systems have gotten confused and not recognized the problem cells. Focus on treating these cells and not on beating yourself up over something you really can’t control. Certainly more sex partners increase your risk because you are exposing your immune system to more infections, but it’s the immune system reaction that really is the key to whether the cells start to misbehave.
Finally, one thing we all have in common is that we have vaginal dysplasia, but remember that is NOT cancer – and from what I have learned, vaginal cancer is much rarer than cervical cancer. To be honest, I fully expect to have another abnormal pap in June – and I expect to have more surgeries in my future. Whether or not any of these surgeries are necessary (since not all VAIN 3 goes to cancer) I won’t really know. I wonder how many women have VAIN that never know they do because they have not had a hysterectomy and only have their cervix tested when they go in for their paps? Since I don’t know, regardless of my test results, I will be getting paps every 6 months for the foreseeable future just to make sure.
Best of luck to you all!
-Stacey