Lichen Sclerosus: Any other women dealing with this disease?

Thanks for including me in this group. I have this condition for the last 10 years. if we have this in a timelline:
I had a histeroctomy in 2006 (at 44), diagonosed with lichen on 2012 (at 50). I was prescribed clobetasol with no results. Flare up every three months. I moved to naturopathic treatment with healthier diet, increasing walking, reviewieing stress around me. By educating myself, I found that maybe estrogen deficiency and talk with my doctor. They prescribed Estriol suppository 1 M. This helped to managed the condition almost 100%. I have some flare ups but minors and easy to control managing my stress and lifestyles. I want to know more about incidents of cancer by having this condition. I noticed a small lump on my vagina recently. I am not panicking, just want to know if there is a research about this condition and development of cancer in the vulva. Thanks!

Since you said that you have developed a small lump you should have this investigated as soon as possible. I have lichen sclerosis for about 30 years. I have had a few small surgeries to remove adhesions. Clobetasol ointment has been effective for me. My doctor said protopic might also help but I couldn’ tolerate it. Part of my problem is that I have nerve damage as a result of injury to a medication I was allergic to (Neomyicin). Consequently I take Lyrica and amitriptyline. This keeps the pain in check. Hope you find the answers that help you.

@analia, I have had lichen sclerosis for about 10 years. It is awful, no matter what one does to try to help. I see my gynecologist every 2-3 months. She took a specimen to have analyzed and it turned out to be pre-cancerous lesions. I thought it was just the white plaque that happens from time to time. I had to have surgery to remove all of the lesions. That was not pleasant and to aid in my recovery, I had to sit on a sitz bath several times a day. I have piraformis syndrome and sitting on the plastic sitz bath was agony. So, I did a few minutes at a time. Then one morning, I awakened to buckling knees. It did not take a genius to determine that going up and down on the sitz bath was bad for my knees (with bursitis). I immediately stopped using the sitz bath. The outcome of damage to my knees involved injections in each knee and physical therapy. I just finished my 20 sessions of PT and hope to continue my exercises at home. I am doing them along with some videos I have from our local YMCA. They sent a lot to me during the shutdowns. And next week I have a root canal. Oh the things we do to survive. I use Halobetasol twice weekly, Premarin twice weekly and numb with Lidocaine. I previously had a compounded cream, but that stopped working. If your health insurance charges $300 for Premarin, look into Universal Healthcare. It is shipped from Canada for $91. My insurance denied the Lidocaine so I paid $148 for a tube until I discovered GoodRX. Now I get Lidocaine for under $13 for a tube at Hy-Vee grocery store. We learn as we go along, I guess. With all good wishes, @joybringer1

You are correct. Estrogen cream was wrong treatment. I was treated with cortisone cream and it went away. I never realized how serious this can get. But if treated correctly should not be a problem. It’s a very uncomfortable condition. I have a friend who went to a dr. who treated her incorrectly and she developed vulva cancer. I hope you get the correct treatment promptly. I’ll talk to you any time. Feel better soon

omg. my biggest fear. what was her symptoms with vulver cancer? i cant get help for anything. the nurse practioner who said i had lichen scloeus gave me estrogen crem and it caused intense itching. then i stopped it saw the gyn for a biopsy she was all set to do it then she said she didnt think at that time i needed a biopsy and said she was almost certain i didnt have it but lichen simplex i had told her i had a bad reaction to prednisone but she kept giving me steroid ointment and i got worse so i went back and she said maybe schlorus wouldnt do a biopsy then cause she said cant do a biopsy when im in a flare she said maybe in january she doesnt even know whats goingon with me i have a appt with a new gyn butits not until nov 18. soonest i could get. i have also on topof that have hd recurrent uti's for 10 months i thought a urologist would help he wouldnt even examine me cause he said he didnt want to make me more sore if i had lichen scholus he wouldnt even helpwith that just giving me the malignant answer like you did. i did have another bad uti all i got was a 7 day course of antibiotics, told to buy ellura and d mannose not even another appt. these drs are gonna kill me. i have no lesions or anything its just red and raw i dont think that qualifies as vulver cancer. i dont know the point in trying to scare me on a sunday when i cant do anything

It’s very rare to get cancer and you would have to have neglected it and you have not. I had this it is red and raw and I sympathize with your pain. Just keep going to dr. Til you get what works for you. My friend who got cancer went to a dr. Who knew nothing about what she had and gave her no treatment. Sounds like you are on top of this. Hope you feel better soon.

well, i hadnt been to a gyn in years. i always had my pcp's do my pap smears. when i was referred to ths gyn it was for the uti's which they never helped with. my first visit was with a nurse practioner i wouldnt have chosen a NP but thats who i got i had no symptoms whatsoever. nothing she said i had lichen schlorus i kept saying what cause never herdof it then i went bac togyn who specializes in this and she wasalmost certain i did not have it but simplex so iwas relieved. theni got worse i think since i had a bad reaction to prednisone and she chose to ignore it. she kept giving me excuses for putting off a biopsy but anyway i luckedout tonight quite by accident i found a uro gynocologist and he had the best reviews. so i made a appt right online for oct 25 for both issues. im sorry if i sounded not nice its just i have hadmany medical issues ever since i got my 2nd covid shot. i have more specialist than i know what todo with. i have to go to the boston area from new hampshirebecause uphere i literally got nowhere in 15 months. its been quite a ordeal. so you were red and raw and had it? thats me but that was only after estrogen cream and steroid ointment which made me worse so honestly no idea but glad my appt is only 3 weeks away.

I have had my lichen sclerosis under control for years by doing 2 things: do not wash with soap in the genital
area, just rinse with water every day. Then every day cover the area with petroleum jelly
to protect the membranes.
If a flare up occurs, rinse and use vaseline after every trip to the bathroom.
check out lssupport.net for all kinds of info.

Has anyone tried fraxel laser for lichen sclerosis? Dermatologist has recommended to me but I need to feel that this is a valid option w some success. I have had for a long time and was finally diagnosed last year. Been doing steroid ointment but I seem to have some shrinking
Of the vulva area. Losing my mind

To sspil5: I use Clobetasol twice a week for 2 weeks then Vaseline for the third week then repeat the process. Use Vaseline on days when I don’t use Clobetasol. This avoids shrinkage to a degree. For nerve pain caused by LS I was prescribed amitriptyline and pregabalin 300 ml needed. Works fine for me. I also try to avoid stress to prevent flare ups. Now I feel everything is under control. I have previously had minor surgery to remove some adhesions in the vulva. My life with LS was not great before I found the right regimen for me. I have never heard of fraxel laser. If you try it I hope it helps you.