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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  • 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....
  • 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...
  • 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...
  • 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

    32y.o.

    6
    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

    7
    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...
  • 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.
  • 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...
  • mdgal

    Sad Sunday

    9
    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...
  • lstojanol

    New Member

    3
    After searching for support I am grateful to have found this group. I was diagnosed in Dec 2015 and had 2 sets of biopsies. Jan 11 I had to have a hemi vulvectomy. I am still trying to recover as I had developed an infection. The pathology showed lymph vessel invasion so I now have to have a sentinel lymph node identification which requires surgery. I am struggling to find the positive in all of...
  • I have been reading all the blogs and I am now terrified. I just had a local wide excision October 6th, with laser and additional biopsies. The biopsies came back advanced not sure which stage, but was told to meet again with my OB next week, and then with the oncologist in November after hearing about everyone's posts I'm not sure if the surgery is worth it or not.
  • Hi all...thank you for sharing so many helpful thoughts. I truly believe in support groups. My 91 year old mom doesn't use a computer but I could print out for her to read.Any thoughts on what an active mobile 91 year old should do with recurring lumps after initial cancer diagnosis in 2013. We're just waiting for an appt to tell what the latest biopsy showed. The last one in April was...
  • I just had a wide local excision 6 days ago as well as laser and more biopsies. I'm still having so much pain it's unreal. I normally am pretty tough but this I can barely handle. The biopsies I had during last week's surgery shows that it had advanced to cancer, I'm not sure yet which route my doctor is going to go, he did say another surgery with the OB oncologist. I'm so scared I'm only...
  • skinnybinny

    Donut cushions

    1
    I don't know about you ladies but sitting is a problem for me, still 3 yrs after surgery. I've become so desperate that I've take a tray of food to the jon so I can eat.I have a flat bottom so unfortunately no padding to keep me up off the affected area.I've purchased about a dozen donut cushions and want to recommend the only one that has even remotely worked for me. It even comes with a cover...
  • Hello Ladies,In 2014 I had a LEEP to remove CIN III after the first abnormal pap of my life. Found out I also had HPV 16. Now 2 weeks prior to my 30th birthday I received the results of a labia majora biopsy which showed VIN III, and I have been referred to a GynOnc at Duke here in North Carolina. The appointment is next week, and I am having a very difficult time with my anxiety.I am angry with...