Vulvar Cancer Support Group

Cancer of the vulva (also known as vulvar cancer) most often affects the inner edges of the labia majora or the labia minora. If you or someone you know has been diagnosed with vulvar cancer, use this community to talk about your experiences and gain support through other people going through a similar struggle. You're not alone

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  • pinkie2

    Newly diagnosed

    squamous cell carcinoma of labia - just diagnosed. Im very frightened - surgery Oct 6. Any suggestions for post surgery, any positive outcomes? I appreciate your comments. 
  • TinaLilly1965

    Anger and terror over female mutation

    Hi, I'm new here... I'm 52 next week and met with the GYN Oncologist today. I have VIN III squamous cancer that is around my vagina, and both inner and outer labia on the right side. The doctor is doing a partial vulvectomy and I'm terrified not only of the longer re cooperation time; my doctor said 6-8 weeks, with the amount  of tissue he will be removing, but also the scarring.... I've already...
  • Curvygirlpeg

    Sexual incompetence

    I need help...I'm two years past my vulvar cancer and partial vulvectomy. In the past two years I have become completely closed off from my husband. Intimacy scares me to death. I don't want to be touched. There is still some discomfort when touched so I'm constantly pushing him away. I feel my marriage slipping away. The more he tries the more I push and I'm getting resentful, so is he. He never...
  • Saya_G


    I see that many of those posting talk about having a partial vulvectomy - why did you go that option? At what stage would that be a good option?
  • stellareporter

    Vulvular cancer - very scared!

    Hi there!  I am brand new to this group.  I went to my GYN in November for my annual pap.  She saw something that didn't look right and did a punch biopsy of my outer labia.  It came back as squamous cell.  She referred me immediately to a gyn oncologist.  I went and she said we would have to do a partial vulvectomy.  Removed half of the outer labia and I recovered and went on about my...
  • addygregory

    Anal dysphasia?

    Are people being tested for anal dysphasia as well ?  If  vin is  from hpv ?   Is everyone only seeing drs with oncology?    I was just diagnosed with Vin 3 a few weeks ago cin 3 12 years ago which caused a partial hysterectomy. Drs believe the virus reactivated after I was started on immune suppressants 5 years ago. Just wondering about everyone's experience and how the treatments are...
  • Saya_G

    Sister & Vulvar Cancer

    My sister was diagnosed with vulvar cancer in summer 2016, she recieved a round of both chemo (1x a week) and radiation (5x a week) - finished up Nov 2016. She has had only two "physical" exams since (10-11 months). Of late she has been very tired, and we discovered last week that she has a break out / sores in the crack area of her behind. Decribed as white patches, the doctor says some areas...
  • DDfan

    VIN II

    Hi,  I was told last Friday that I have VIN II. I just had a pap in March and no HPV was found. Everything I've read said that VIN in my age group (46) usually comes from HPV. The non HPV related VIN is usually in the elderly. I don't understand. What else would cause this. I have a urology appointment on Wednesday because I have constant blood in my urine. And another GYN on Friday because my...
  • EmileeRoach

    My journey with VINIII

    I was diagnosed with VINIII just a few weeks ago. to give a little  perspective on my situation I am 23 years old. I have HPV 16 and 18. Which are the high risk strains of HPV. Ive known this for sometime now and have been told all the horrible things that can happen when you have HPV. Being young I never once considered the possibility of it happening to me. I guess I live in that fantasy world...
  • sarah_eliz

    VIN I First Laser Surgery

    Hi, I’m Sarah. I’m 19, and was just diagnosed with VIN I three weeks ago. This came after 4 months of near-constant pain in my vulva that started to severely limit my life—I had to quit my job, and was generally anxious every time I had to leave the house in fear of the pain starting in a public place that I couldn’t stop to make myself comfortable. I saw two different doctors who could...
  • Needshelp

    Info needed please

    hello,  I was referred to an oncologist for VIN grade 2/3 but my gynecologist said it was premalignant and not actually cancer but may still need surgery. I can't find much info on what to expect. They tested and I do not have hpv so my regular dr wasn't sure what caused this and said it's extremely rare. I would appreciate any information on what to expect and questions to ask her and if any...
  • Viciribarren

    More info on wide local excision!!

    Hello! I am going to a consult next week with an oncologist ob to talk about the possibility of a wide local excision. The area doesn't look pretty to be honest. I am petrified. I have been through 4 kidney transplants, so I am sure I can handle everything?! I'm very scared of the pain and healing. I am a school nurse at a new school and the year is just beginning. How long have some of you been...
  • foreveroptomistic

    Cancer and VIN keeps coming Back

    Hello All,New to this site.  I'm 42 and have been fighting reoccuring vulvar cancer\VIN for the last few years.  I have had two battles with vulvar cancer in Aug 2016 partial vulvectomy and June and July 2015 2 partial vulvectomey\and then a total clitorectomy between the two times.   I had originally started with lichen in 2013, then VIN with 8 laser surgeries over the last few years, have...
  • Blankstare

    Vulvar cancer

    I was just diagnosed with this im so scared.I have to get my clitois removed.I'm only 40 I'm single and a lesbian I'm so depressed and scared I don't know what to do 
  • go4it

    Recovery Stories?

    Hi, I had wide excision surgery on May 8, 2017 for VIN 3 and am recovering pretty well. I've read almost all of the posts on this group, but most of the messages don't talk about long-term experiences after their intitial treatments. It would be really helpful to know how other's experiences are going after 12 or more months from their first treatments, whatever they were. Full recovieries?...