Lichen Sclerosus: Any other women dealing with this disease?

Well...to my amazement, 2 more Lichen sclerosus (LS) VIN III (Vulvar Intraepithelial Neoplasia on a precancerous scale of I to III) lesions: one on a site close to the urethra - so it was monitored before, and laser ablated with extra caution in Feb. - and one at "11 o-clock", as the positioning is described. I came back yesterday afternoon upset, but determined to get these ultimately removed.

The option the gyne-oncol decided we should try for 2 months is application of Imiquimod cream every evening before bed; hopefully the idea is to fall asleep before the burning becomes noticeable. Imiquimod was an "option" discussed before opting to go with the laser ablation surgery in Feb. because Imiquimod does burn I'm told, and it would have had to be applied over at least a 6 month period. I / we went with laser ablation instead in Feb., followed in April with the next outpatient surgery: excision of an area of concern that was deeper than the ablation reached; that area looks fine as of yesterday (some good news to appreciate!).

So, just to follow up for others to know where the journey can go, I will use the Imiquimod starting tonight for 2 months. If it doesn't seem to have an impact along the way (or is too uncomfortable?) I'm asked to contact her office to see her sooner. Then we would go forward with another hospital (outpatient) excision procedure under anesthesia, and recovery that, if April's experience is representative, would be at times uncomfortable, sometimes painful, but not the excruciating pain of bathroom visits for 7 weeks after the Feb. vulvar laser ablation.

If this helps someone/others, feel free to let me know with a Reply or "Helpful" star here. I may have gone into more detail than I originally intended to, but again, here on MCC of all places it seems it can be valuable to others wondering about LS (I do not do/use social media for privacy and comfort reasons).

Take care, keep on top of these things with your gyne &/or gyne/oncol, and get after it!

[BTW: having just had an annual visit with my dermatologist, I asked him what he knows of LS, and - because of posts I've seen here where folks are wondering who they go to - the derm or their gyne - he said he can ID it so that it can be followed up by your gyne/oncol with close monitoring & the needed treatment approaches. But also, your gyne would/should likely ID it at your regular visits. He also said, like other diseases/conditions (autoimmune or otherwise) 'we're treating the patient, not (curing) the disease'.]

Makes sense to me, but, as he acknowledges, lots of Qs remain, no cure, and so it is with many, many medical mysteries.

Best wishes, warm thoughts to all.

@itchybits - Another resource I had opened:
https://journals.lww.com/jlgtd/abstract/2023/04000/vulvar_high_grade_squamous_intraepithelial_lesion.4.aspx

@brandysparks

Thank you for all your valuable information, I have a recheck in Sept and will read up on disease before appt to make sure I know what questions to ask. Mine is still at a treat with Clobetasol cream stage but it is spreading.

The last time I was in, the gyn provider took pictures so can do comparisons. Awkward but necessary. No different then if had skin condition somewhere else on body that needed to be monitored.

My advice to all women, no matter what age, continue to have pelvic exams. Mine was not diagnosed early because my PCP had stopped doing pelvic exams. I started having symptoms and then PCP still missed. I did my own self-refer to gyn and then it was diagnosed.

Thanks again for research.

@roch - You are most welcome. Please do reular OBGYN visits. anyway.

I've been using Clobetasol propionate 0.05% for years, and I used what was recommended before it came along. And here I am at 67, after 40+ years of following this LS condition. And I am getting these lesions.

If I recall what I've read correctly, of those with LS, about 9% can get to this precancerous stage that I am in. From there, I don't recall what % can get to the cancerous stage, which I am most certainly trying and hoping to avoid.

Be well.

I am so happy to find this group. I have been Clobetasol for years it works ok but I still have issues. There are three types of lichen, sclerosis, oral lichen, planus, and just plain lichen.. and I have all three.
It is very painful the lichen sclerosus, as well as the oral lichen planus. I keep hoping they find a cure for this or a better treatment.
Thank you for your input all of you.

@minnesota10 - welcome to my world (and others’)! I too have lichen sclerosis and lichen planus. I also use Taro Clobetasol ointment for lichen sclerosis, and Lyderm gel for oral lichen planus. I used both daily for seven days and now use only when I have flare ups.

Hi! In addition to the information you have provided, there is another type of Lichen Planus not mentioned.
It is called "Esophageal Lichen Planus.". This is extremely rare. There are approximately, less than 50 people in the Country that have this. I am one of those patients! Unfortunately!!!
My esophagus is trying to close. My immune system is attacking the mucus membranes in my body. I have had to go under anesthesia twice this year so the doctor can try to stretch my esophagus a little bit.
They're not able to stretch it much, due to the risk of tearing it. Things get stuck in my esophagus and other problems.
I guess I'm at a very high risk for Esophageal Cancer.
I also have Oral Lichen Planus and Lichen Planus on my skin.
I don't have Lichen Sclerosis yet. It sounds miserable! I'm sorry you're suffering with this.❤️

Thank you for the information. I have been having trouble swallowing. Food or water will go half way down and then stop. Pain is bad. It will slowly relax and go down. They talked about it.
🥰 for the information.

Oh no!!
I sure hope you don't have Esophageal Lichen Planus!!
I recommend you see an excellent Gastroenterologist.
I had a scope put down my esophagus, under anesthesia. I had a few biopsies done. The pathology confirmed Esophageal Lichen Planus.
I caution you if you're having things getting stuck in your esophagus.
Choking is a serious concern & danger of this disease! You could aspirate the food into your lungs!!!
Again, I sure hope you don't have ELP!!
Keep me posted if you like!
Take care ❣️

Thank you. Sending a message.