I am glad to find a chatroom for Vulvar Cancer/Vulvectomy Surgery issues.  I saw a lady post questions asking if anyone had a white spot in vagina and I did so I wrote this post to help answer her question and possibly help someone else who may be unsure about symptoms.  I had a white spot inside my vagina on the vaginal wall that was about the size of a quarter and I went to my primary care dr. and told her I thought something was wrong and told her I have had abnormal paps since the age of 17 and have already had the cap of my cervix removed in my early 30's due to hpv progressing to cervical cancer.  So I got a pap done, (she never swabbed or biopsied that white spot on my vaginal wall - she only gave me a pap that swabbed my cervix) and it came back with no abnormalities then I thought maybe it was a yeast infection or something so I tried the over the counter creams but it kept itching and burning so 1 year later I went back to her and she did another pap with same results so I asked her to test me for STD's thinking maybe if it is not hpv or something then maybe I got some kind of STD from my partner.  All the std tests came back negative.  I asked for a referral to a gynecologist and she said it was not necessary due to the pap coming out normal. But as time progressed the white spot kept getting bigger and bigger and burning when I urinated and sex burned so badly I kept trying to avoid it all together.  I couldn't even urinate with out wanting to cry - I had NO open sores just this white spot.  It had grown to the size of a 50 cent piece by now.  So I decided that maybe my primary provider was not knowledgeable enough and I have now had this spot for over 2 and 1/2 years so I scheduled an appointment at Planned Parenthood thinking they must know more about problems in the vagina than anyone would.  Thank GOD I did make that appointment.  They explained that if she did not biopsy the white area it would not have shown up, and they found that not only did I have that white area inside on my vaginal wall but it spread to my rectal area too!  They did so many tests and biopsies and they all came back with VIN 3 and AIN3 (anal area) and some areas they believed may have already progressed to cancer so Planned Parenthood Immediately referred me to an oncologist/gynecologist.  I was scheduled right away for a vulvectomy & Hysteroscopy bx endometrium & polypc with d&c and also sent me to a colorectal oncologist too who said that I also needed the AIN3 and pea sized tumor (which my primary doctor said was a hemorrhoid) removed from my rectal and perianal areas while I had my vulvectomy done.  So they both worked together and performed all the needed surgeries at one time.   I had my surgery in December 2015 and I recommend to anyone with a white area in the vagina to get to the doctor asap and get a second opinion too.  I knew something was wrong.  My primary care doctor gave me a prescription for hemorrhoid cream to treat the rectal tumor and itching and I found out that it may have made it worse and spread it like crazy because it has a steroid in it and it fed the cells and spread.  I had a painful recovery and tore my stitches in the rectal area which was horrible. It has now been 7 months and I am healed up but mentally I am having a hard time when it comes to sex - I think I am paranoid that the vin3 or ain3 will return if I have sex and I can not find much info about it.  My doctors never spoke to me and my spouse about risk of it returning if we had sex or not,   And I worry that maybe I had given him hpv at some point and I don't want to reinfect myself with that part of this.  He was a good trooper and offered to use condoms now but even with condoms I am still nervous I will end up needing another surgery and it was so awful that I never want to go thru this again.  The doctors said most likely at some point I will have to have more surgery.  I almost have no sexual desire at all.  I have stitches/scaring on the inside of my vagina and also along the lip of my vagina all the way back to the rectal area and more stitches/scaring on my anus.  But it does not hurt much now so that is good.  It is tighter and I can say that I had to be more gentle when having sex now when we have.  I pray that mentally my sexual desire will return and I can enjoy sex again someday.  This entire process affected my womanhood and there is no way to prepare for the feelings that arise.  I had a spouse that tried to help me emotionally feel like I was attractive and he says it is not ugly down there but even knowing he feels ok about it still didn't help me have down times when I feel like I am gross and disfigured.  It truely is not as ugly down there as I thought it was going to be - my oncologist was awesome!

Must have items for recovery are a hand-held type of shower head and a hair dryer with a cool setting. I don't recommend using a hot hair dryer to dry this very sensitive area after surgery use on cool setting!!  I also recommend doing as little movement the first week as you can STAY IN BED AND REST because ripping stitches hurts ten times more and they don't re stitch them back up and it raises risk for infection!  DO NOT WIPE AFTER GOING TO THE BATHROOM - Get in shower each time and use hand-held showerhead to rinse gently and thouroughly then dry with hairdryer.  EVERY TIME!!  Use as little of the pain meds as possible because they constipate you - Tylenol or Ibuprophin 500 mg actually takes the pain away better!!!  Eat papaya if you do take pain meds as it will help not be constipated as bad. Get some unscented maxi pads and wear them with panties that are not tight.  But rest for at least that first week and try to keep clean and dry.

So to anyone who has already gone thru this or to those who are about to go thru vulvectomy surgery - God Bless You!!