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

0 Online
  • 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...
  • 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...
  • 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...
  • 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...
  • 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...
  • themacgirl


    Hello, recently i was diagnosed with this rare type of cancer. On march 14th i went trough a small surgery, where a small lesion/first diagnosed as levcoplakia/ was removed from my upper side of the vulva near the clitoris. The histological result showed early differentiated type of squamous cell carcinoma, which was very close to the resection line . As i had no other symptoms or complains...
  • fk15

    Without hope

    Im grasping at straws here.. my sister was diagnosed with Vulvar Cancer about 12 months ago.. it was also in one lymph node.. she had surgery and radiation and was told by her Professor specialist that he felt confident that she was cancer free. Two weeks later they realized there was cancer in a wound she had.. they couldnt do surgery as it was around blood vessels and she was having more...
  • skinnybinny

    Still can't sit without pain

    It's been 6 months since my vulvectomy and I still can't sit without pain. Is this normal? Everyone is telling me I should be fine but I'm not.
  • heimbca

    what does vulvar cancer look like

    What are the symptoms of vulvar cancer? I have irritated red skin around my inner labia--have had vaginal atrophy for quite some time and just started using estrogen cream (also breast cancer survivor). I have had this irritation for about three months now--been to ARNP at gyn office--continue using estrogen cream daily and steroid ointment for six weeks. What does vulvar cancer look like and...