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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  • 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?...
  • 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...
  • 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...
  • 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...
  • JessieGirl34

    Worried about this bump

    Hi all,i have and had a couple of these weird purple "bumps" on my inner labia for many years. They have always been mostly flat and never bothersome. Last night I happened to feel a large bump, so looked in the mirror and was horrified to see this large purple bump on the edge of my outer labia. At first I thought it was a blood blister.... It's very purple. There is a smaller one just south of...
  • mdgal

    Sad Sunday

    Since I was diagnosed with vulvar cancer 11 days ago life is drastically different. I discovered the tiny sore spot that grew to the size of a dime in 3 short months. I carry the HPV virus and had a hysterectomy in 2000 due to the pre-cervical cancer that HPV caused; I believe HPV is the culprit of my vulvar cancer. After reading the posts on this site and discovering a new lesion yesterday, I am...
  • EM503

    Before And After My Vulvectomy

    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...
  • SLW102016

    Possible diagnosis coming?

    hi all-just got home from a doctors appointment. Primary care doctor. I went to her because I've had a white lesion/spot that is on the inside of my right labia, saw it back in May after having some odd pains in that area, it has spread a bit. Along with painful urination, painful intercourse, basically pain/irritating that whole area near vaginal opening and uretha area.there is the smallest...
  • nancyseawellsanders

    Hi New Member

    Hi. I had a partial vulvectomy on March 11 and got the word today that it was indeed cancer. We went ahead with the surgery because I was in such bad shape and in so much pain. I am happy to say, though, that the pain from the surgery has not been much worse than what I was experiencing before surgery.However, I got bad news today. The pathology report came back and there was cancer in the...