Trying to connect with Lichen sclerous and vulvar cancer women.

It is very hard not to think about. I had vulvar cancer 2 years ago. I had a radical vulvectomy and reconstruction surgery plus chemo and radiation. I am able to sit ok but every time get up or sit down I am reminded. I feel like other cancers you can "forget" about it at times but not vulvar cancer. I am very worried about it coming back too but I know worrying doesn't help either. Everyone asks me why I am not dating (I am 56)..... I don't even know if I can have sex again or what it would even be like to be in that relationship like that.#cancersucks

I am going to get a radical vulvectomy with reconstruction in the next week saw the plastic surgeon yesterday and the meeting was doom and gloom like I will not be able to sit for 6weeks hospital stay I’ll be app 3 weeks have to go home with a private nurse the skin that they will use for the graft on my thigh has been compromised because of the radiation they are not sure if this will take and on and on this will be my 3 operation and you are right sitting is so painful even after the healing of the first 2 operations I am so glad you posted keep in touch

Has anyone had experience using Clobetasol for LS that didn’t remediate the pain? Biopsy said LS/no cancer. Have been using the Clobetasol daily for 2 months without much relief. Maybe it takes longer to work? It’s very frustrating and painful. Saw two different gynecologists and they dont seem to have other options. Anyone know of an LS specialist in the Midwest? Would appreciate your thoughts. And thanks in advance.

@gayle2457, the steroid ointment clobetasol is commonly prescribed for lichen sclerosus. https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/diagnosis-treatment/drc-20374452
I'm sorry to hear it is not working for you.

Fellow members @173p @ronag, @rashida @willows @helendances may have experiences to share with you.

Have you looked into specialists within the Mayo Clinic Health System serving the mid-west https://www.mayoclinichealthsystem.org/request-appointment?

Just wondering how you are doing? Were you using anything over the counter for your lichen sclerosis?
What were your symptoms of LS and what did you use for relief? Thanks

Hi Ladies,

I’m 38 years young I’ve been self treating “yeast infections” and a few prescriptions from my GP when otc meds didn’t help. It’s been pretty bad the last few months. I went to my GYN today for lower pelvic pain not the yeast infections. They found free fluid in my pelvic area which is causing my discomfort. While speaking with her I asked about my extremely annoying yeast infection that I can’t get rid of. It may clear up a few days but I can’t seem to truly cure it.
Right now, I thought it was cleared up. She still wanted to look. One little peek and she said, I don’t think you are dealing with yeast. I think you have LS.
When she explained what the symptoms were it was everything that I was experiencing and thinking was caused by a yeast infection.
She is calling me in steroid ointment. She wants to see me again in 6 weeks and asked for me to go straight to her office when it flares up again.
She gave me print out information on LS but I wanted to see photos of LS and Vulva cancer. The joy of Google. I’ve seen photos that are so very similar to what I have looked like.
Question: has anyone had a lump/bump that flares up and seemingly goes away? What I thought was just major irritation and swelling due to yeast irritation looks exactly like images of vulva cancer. The red bump on the side of the clitoris and vulva. It is not there consistently though.

Am I just losing my mind? Do I need to call her office and tell her this? I did not mention a bump. I chalked it up in my mind as side effects from a very persistent yeast infection. Now seeing photos, I completely 100% agree it’s LS. Could it already be something more? I was originally there for pelvic pain seemingly unrelated to this.

@astevens, yes, you can drive yourself crazy by Googling images and symptoms. And yes, it could be lichen sclerous, especially since the bump goes away. AND YES, this is worth calling for an appointment and getting the medical professional to check it out. It is better to be safe than sorry.

I don't say this to escalate your worry. I don't see anything in your post that would indicate cancer, but I'm not a doctor. A clinical exam by a doctor can rule out cancer or order tests to rule it out. Please call in the morning. Until then, do something to distract yourself and set the worry aside. You've got a plan in place. (Easier said than done, of course.)

@astevens

Go see the Dr. so answers, tests or treatment/s can be determined. Always best to find out than worry. Nobody needs more stress. Let us know. All the best, take care.

@andwho good morning I get diagnosed with Laken sclerosis back and about 2015. Had a radical valvectomy in 2019. Endured radiation and chemo. It’s been a long journey ladies six years of diligence biopsies, constant monitoring and now it’s moved to my anus so more biopsies more appointments another specialist in surgeon and waiting results of biopsies on the same area looking like the cancer is back after 67 years no the isolation well, it’s funny our kind of cancer. Everybody asks what kind soon as you mention it they shut the hell up. Don’t know what to say. I can only say my diligence hopefully caught it at stage one not stage three like last time. I’m finding it to be quite frustrating. All the creams do damage. One thing after another have been staying off the site for obvious reasons like to be words of encouragement not words of burden say a prayer.

@andwho Hello there. I have LS. It has been 28 years now since a suspected diagnosis by my gynecologist (of many years) at my annual visit then a confirmation biopsy. I was also diagnosed with vaginal atrophy related to peri (soon complete) menopause at that time as well. At first I was put on a very potent vaginal estrogen from horse hormones but it made my breasts swollen and heavy and felt crampy like I was going to get my period. After doing extensive research I refused to continue with that medication and refused the Clob as well. I asked for Estrace and a less potent steroid and my (long standing older male) gyno hit the roof and copped an angry attitude.

I found a younger female gynecologist connected to a large teaching hospital and my experience was totally different. She listened to my concerns and agreed prescribing Estrace and later compounded Estrace without the chemical additives which were irritating my delicate LS skin. She explained the options of a steroid in consideration of the vaginal atrophy. In addition she referred me to an oncology gynocologist a professor and research fellow as well as clinician. Also a very different experience than my original gynecologist.

The oncologist gyno advised that it was my option as to whether to use a steroids as long as I did not have any itching. He said that without the itching not using a steroid would not effect my overall cancer risk factor. The side effects of the steroid over the years could exacerbate and increase the thinning of the skin (vaginal atrophy) causing tearing, I opted to stick with just the compounded estrogen and go for regular checks at the cancer center every six months so to catch anything early. So far so good. I feel very fortunate.
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