Trying to connect with Lichen sclerous and vulvar cancer women.

@samanthabouchard Nothing you’ve written is burdensome. We are a support group. We share as much or as little of our own stories as we want and we make an effort to encourage one another.

Many of us here have kept our respective diagnoses from people other than our close family and friends. I did that because I had endometrial cancer and gosh, this involves, gulp, my private parts. I didn’t want to hear anyone else’s story about their sister, their neighbor, their friend of a friend. And especially did not want anyone to say - as one person did - “do you know what caused this?”.

I’m sharing the above because I’m figuring it’s the position you are in. Many people do not hear about some parts of the body. I’ve asked my NP in gyn/oncology at Mayo Clinic and she sees women with these cancers. I expect that yes, your diligence in your check-ups and biopsies means that the cancer was caught early. I’m glad to hear that.

I hope you will continue to come back to this site and allow us to support you. Are you currently in treatment?

@naturegirl5
Thank you for the positive encouragement one thing for sure even the second time you hear the word cancer still keep your dumbfounded, and in the days thought it would be easier the second time around my treatment plan appointment is this Thursday. She had already mentioned before surgery that if it was cancer and more surgery was gonna be needed so I’m assuming that is going to be something as well. I am experiencing some pelvic pain on the same side so I’m sure I’m looking at a PET scan. Definitely will keep you guys updated.

@samanthabouchard Yes, please keep us updated. I’m sad that you are experiencing pelvic pain and I hope whatever the treatment is (surgery?), the pain will be relieved.

I had a recurrence two years after my diagnosis. Isn’t that why we return for these appointments so that if there is a recurrence or a new cancer it’s caught early? Still, hearing “cancer” again the second time was almost more traumatic than the first time I heard it.

I have\ had both. In remission for vulvar cancer but still have lichen sclerosis. Happy to chat.
Bobbi

@dougajoi my LS diagnosis came during menopause, went to the doctor for excessive bleeding and that’s what I was diagnosed his frightened look really raised alarms have kind of been on top of things since then the Clara saw cream has brought me to damage skin tearing, etc. I’ve had such a recent flareup with the Laken sclerosis, but I think it was because the cancer is coming back which it has been confirmed this week she’s mentioned estrogen creams would like to hear more on that have never used them have never needed them through menopause just to have always heard bad things about it. What is the benefit to this estrogen cream because the itching is driving me crazy I don’t know if I’m itching from the recent surgery or from the lake in I just know it’s driving me nuts and starting to get extremely painful but now with the new cancer diagnosis time for a reset she is concerned about the lack of control over my precancerous disease, which obviously has resulted in cancer, so yeah, some more on the estrogen please

I went cotton only or pantyless in full skirts, cotton leggings. No Lycra spandex leggings, panties or pantyhose. Interluken 2 injections directly into the lesions, Accutane directly from the manufacturer sent to my Dr. and given to me as ‘samples’, immunotherapy (from my own biopsies) injected into the lymph node under my arm. Vitamin e-oil and Ora-gel topically for pain after peeing. Went thru a lot of wash cloths every day. Surgical excisions for 9 years. Dr Raymond Kaufman (Baylor Houston) took my slides on the road and luckily happened upon some brave souls who got radical and got it all )even the clitoris) with no skin grafts. All of my Drs have retired. Tulane University in New Orleans did my final successful surgery.

@andwho I just posted all of my self-researched treatments with successful outcomes. The late 1980s thru ‘97 were tough, but I found courageous Drs who cooperated with me to figure this out. My comment is on your original thread somewhere. I’m 70 and have been clear for 27 years.

@ima1survivor
Did you have vulvar cancer?
I was diagnosed with stage 1b vulvar cancer in 2023, radiation & chemo were my treatment. Then returned again in april 2026. Had a radical vulvectomy with reconstructive surgery. Recovering now! Any advice? My life will never be the same!

Did you have vulvar cancer?
I was diagnosed with stage 1b vulvar cancer in 2023, radiation & chemo were my treatment. Then returned again in april 2026. Had a radical vulvectomy with reconstructive surgery. Recovering now! Any advice? My life will never be the same!

Hi, I was diagnosed with lichen sclerosis in Jun 2025. My gynocologist put me on extract and clobetasol with a daily regime working down to extrace and clobetasol twice a week. I was told estrace was low dose and shouldn’t cause cancer-low risk. Well in Apr 2026 I started bleeding and got a biopsy which confirmed I had cancer. She put me on progesterone which eventually stopped the bleeding. I went to a gynocologist/oncologist and he was surprised I was put on estrace and said to get off it and just use clobetasol. He did an MRI on me which was rare because I have a pacemaker, but found a major hospital university that would do it. He confirmed the tumor and said normally they do a full hysterectomy and salpingo oophorectomy which removes every thing but there is a procedure called on IUD with great success and the MRI confirmed I’d be a candidate for that. So I chose the IUD. He said I’d be checked in 6 months and if it does not work I’d have to get the hysterectomy etc. so I chose the iUD. Waiting on a date for surgery right now. iUD takes about 5 mins. If I have to get full hysterectomy etc. it will be robotically and I should be in and out in a day. I feel the first dr led me wrong but my internal medicine dr said it could be other factors too….ill never know. Clobetasol works well for me so far.