Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

Is anyone out there dealing with this disease? I am currently using a compound ointment that my oncologist prescribed but I'm looking for possible lazer treatments or anything else that might now be available.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@sspil5

The dr was wonderful. Completely informed on LS. She took a biopsy to confirm diagnosis. Offered estrogen cream that will relieve symptoms. My past breast cancers have not been estrogen driven so I am willing to take that risk. She even called my oncologist to get their blessing. The Mona Lisa fraxel laser is a 3 step , 6 weeks apart . No pain and likely ( u know they never promise) to stop progress of LS and all symptoms. They check 1x per year to see if a 1x reboot is needed . I’ll be trying the estrogen for a month since covered by insurance. Fraxel is not covered. Fraxel also works on incontinence so I’ll be letting my leaking friends know . To Be continued….

Jump to this post

I had a different condition of outer vulva (possibly genetic? many small white lumps, had to rule out cancer) & after benign Biopsy, Dr recommended laser treatment. But the dermatologist didn’t do “that area” of body, so I had to use a strongest steroid oint. I’m interested in the Mona Lisa fraxel laser you mentioned; what Dr, where located? (If it returns, don’t like steroid oint). T.Y.

REPLY
@fdixon63

To clean vaginal area I soap up my hand with coconut soap and gently rub the area and use hand held wand in shower (mild temperature water) to gently rinse. My vulvar dermatologist has me alternate estradoil (use liberally) and Clobetasol (tiny bit on just painful areas). These are applied once a day at bedtime. This has controlled my LP the best in the 20+ years of painful suffering. So good to finally find a doctor who knows what to do.

Jump to this post

I have the same issue for past seven years. Completely under control with Clobetasol.

REPLY
@kewp

I had a different condition of outer vulva (possibly genetic? many small white lumps, had to rule out cancer) & after benign Biopsy, Dr recommended laser treatment. But the dermatologist didn’t do “that area” of body, so I had to use a strongest steroid oint. I’m interested in the Mona Lisa fraxel laser you mentioned; what Dr, where located? (If it returns, don’t like steroid oint). T.Y.

Jump to this post

Dr S De Noble , Wayne nj.
I believe that quite a few Drs are doing this treatment for LS now.
She is a gynecologist so that makes me even more trusting .
I likely will do it in January and can of course keep everyone informed. I was told to be very cautious of using Clos ointment as it thins the tissue.

REPLY
@sspil5

Dr S De Noble , Wayne nj.
I believe that quite a few Drs are doing this treatment for LS now.
She is a gynecologist so that makes me even more trusting .
I likely will do it in January and can of course keep everyone informed. I was told to be very cautious of using Clos ointment as it thins the tissue.

Jump to this post

Thank you. I’m in IL but will look online and ask at gyne appt in Jan. Good luck to you & Yes keep updates!
(My gyne didn’t like idea of strong steroid oint which can thin tissue, but it was a referral Dr who Rx’d it)

REPLY
@willows

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.

Jump to this post

Could you tell me more about your surgery. I am considering surgery for my hooded clitoris and remove the skin in my episiotomy area.

REPLY
@kathy5645

Could you tell me more about your surgery. I am considering surgery for my hooded clitoris and remove the skin in my episiotomy area.

Jump to this post

I had traditional surgery for my hooded clitoris many years ago. Because of LS the
skin of the hood was firmly stuck on the clitoris. It was detached and sewn back into the form of two lips covering the clitoris as it was not possible to recreate the traditional hood. I sometimes find that the lips separate and the clitoris becomes exposed but by in large everything is fine.

REPLY

I am not a doctor or a nurse. Lichen Sclerosus is a skin condition of the female and also male genital area. It is not contagious. It is an autoimmune inflammatory condition and is fairly common especially in women. I believe that most people have not heard of this. I am searching for the most homeopathic and healthy food alternatives to correct it or at least alleviate the annoying symptoms. The main treatment I have seen is a steroid cream that can help with symptoms but is not a cure. If you are diabetic the steroid cream can make your blood sugar spike. This is not an option for me.
There is a fragmented laser treatment available that has not yet been approved by the food and drug agency so it is not covered under any type of insurance. It appears they have had really good results. Has anyone received this treatment? If so I would appreciate it if you could share your results.
This condition needs to be talked about and researched way more than it has been. I believe many people could have this condition and not be aware of it. Before my diagnosis I had no knowledge of this condition. I wish you all well.

REPLY
@allconnected

I am not a doctor or a nurse. Lichen Sclerosus is a skin condition of the female and also male genital area. It is not contagious. It is an autoimmune inflammatory condition and is fairly common especially in women. I believe that most people have not heard of this. I am searching for the most homeopathic and healthy food alternatives to correct it or at least alleviate the annoying symptoms. The main treatment I have seen is a steroid cream that can help with symptoms but is not a cure. If you are diabetic the steroid cream can make your blood sugar spike. This is not an option for me.
There is a fragmented laser treatment available that has not yet been approved by the food and drug agency so it is not covered under any type of insurance. It appears they have had really good results. Has anyone received this treatment? If so I would appreciate it if you could share your results.
This condition needs to be talked about and researched way more than it has been. I believe many people could have this condition and not be aware of it. Before my diagnosis I had no knowledge of this condition. I wish you all well.

Jump to this post

Welcome @allconnected, To help you connect with others, I moved your post to this existing discussion group:
- Lichen Sclerosus: Any other women dealing with this disease?: https://connect.mayoclinic.org/discussion/lichen-schlerosus/

I did this so you can see previous messages and connect easily with members like @tropicallady1276 @momij @gingerbear22 @searchingforrelief @joybringer1 @kathy5645 @kk57 @sue225 @nanny23 @drd79 @willows @cookiegirl1944 and many others.

@sspil5 was also asking about laser treatments and @kitten92 and @dreamer60 have success experiences to share.

REPLY

Laser treatments were very painful for me, but they put me into remission for 4 years now.

REPLY
@kitten92

Laser treatments were very painful for me, but they put me into remission for 4 years now.

Jump to this post

Terrible that it was painful
We woman endure so much!
Remission for 4 years is remarkable so far . Thanks so much for giving me some hope.
At this point normalcy in at least 1 main area of the body will feel so good . I saving my $$ and will have it done in 23’
Continue to feel good

REPLY
Please sign in or register to post a reply.