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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  • 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...
  • 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...
  • 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...
  • 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?...
  • Meech

    4 weeks out from a radical vulvectomy

    I had a radical vulvectomy 4 weeks ago and let me tell you nothing prepared me for this. I am only 30 years old and am dealing with vulvar cancer for 2 years now. I was diagnosed with vin 111 2 years ago I had a laser surgery which seemed to work and then it came back 10 times worse. This is the most horrific thing anyone can go thru as a women. My entire vagina was cut off a d reconstructed. It...
  • Cari

    Vin 3 workup

    Hi all,About a month ago, I felt something on my left labia--  managed to have a look; a white lesion.  Scheduled with my family practice-- she sent me to GYN, who biopsied.  The biopsy came back as Vin 3, and I was then referred to GYN oncology.When I saw the Gyn Oncologist, she looked at the area, offered several options, but said she would recommend a wide area local excision.  Since it...
  • humorhasit

    Pre-Op Prep for Post-Op

    There is so little information out there about post-op care for vulvectomy. What I do find is a general "keep it clean, dry and don't sit on it" spiel. Pretty sure we have that covered.My partial vulvectomy is scheduled for March 31st. I've been digging for information as much as I can to be prepared. This is what I've managed to put together so far:Supplies:- Sitz bath (usually provided by the...
  • rlexus

    1 year recheck...

    In February I will have my 1 year recheck from my vulvectomy.  I can honestly say....I have not looked down there in well over 6 months.Still having the itching of the only area they didn't take...#savemyclitI don't normally ask but...just say a prayer for me. 2016 was not my friend and I am praying 2017 can be better!Hope everyone had a great holiday and may 2017 be full of life with good...
  • AussieSurvivor123

    Need some help/advice

    Hi. I have just joined this group to hopefully get some advice from anyone who has had vulva cancer and removal of clitoris.I have been blessed to be a survivor of cancer of the vulva. I am currently recovering from a partial clitoradecomy and removal of 2 lyph nodes on either side of my groin. I am home now after 7 days in hospital, and am losing sleep over the pain I am experiencing at the site...
  • Yellowrose


    I would like to chat with someone about leg pain from knees down. No swelling just pain. This morning it started in my arms as well. So I am not in the greatest of moods. No one has any answers or seems to care.
  • Donna0730

    Please give me some input....

    Hi everyone. My name is Donna. I'm a married 36 year old Mother if two. I had a hysterectomy 7 years ago due to cervical cancer brought on by HPV and for the last year and a half I've been battling VIN III. Two weeks ago I had laser surgery. One spot was in the perineal area....the entire area and the other was inside my clitoris. The perineal area is healing extremely well, however, the clitoral...