1. < Autoimmune Diseases

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.

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joybringer1 | @joybringer1 | Nov 7, 2022
In reply to @eileenb1022 "Hi Becky, no i didnt but someone recommended a vulver specialist. i saw a brief video..." + (show)
@eileenb1022

Hi Becky,
no i didnt but someone recommended a vulver specialist. i saw a brief video of him he seemed very knowledgeable and kind. i missed my appt this past week as my husband was having trouble with his truck so hoping it gets fixed today so i can reschedule as soon as possible. the burning is driving me crazy. i just want to know what it is. im not completely convinced its LS but we will see. i keep the area clean and go in sitz baths twice a day. all i can do for now. i will post as soon as i see him. thank you so much for reaching out!!

yes, always beautiful in new england!! fall is my favorite time of year!!

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@eileen1022, I am anxious to hear what you find. I do have LS and burn every day. I have tried various remedies for this including three different compounded creams, lidocaine/prilocaine, and lidocaine. I am on lidocaine now, but it is not helping numb me. I have no idea what is next. I wish you the best as you search for some help. With all good wishes, @joybringer1

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1 reply
eileenb1022 | @eileenb1022 | Nov 7, 2022
In reply to @joybringer1 "@eileen1022, I am anxious to hear what you find. I do have LS and burn every..." + (show)
@joybringer1

@eileen1022, I am anxious to hear what you find. I do have LS and burn every day. I have tried various remedies for this including three different compounded creams, lidocaine/prilocaine, and lidocaine. I am on lidocaine now, but it is not helping numb me. I have no idea what is next. I wish you the best as you search for some help. With all good wishes, @joybringer1

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Hi Joy
I will let you know. I wish it was sooner than next Wed but I have so many appointments that's the soonest. Honestly I have no idea I didn't have burning, itching or pain till the started giving me steroid ointment and estrogen cream add in recurrent utis for almost a year. Not fun. But looking forward to seeing this specialist.

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dach | @dach | Nov 7, 2022

Hi, my name is David,
I was diagnosed with Limbic Autoimmune encephalitis 3 years ago. I had multiple seizures and spent over 7 months in the hospital. I have lost almost all of my memory. Is there anyone out there that has been diagnosed with limbic AE that I could help support each other. I am also on 16 pills per day and have 5 specialists that I see. Loosing hope.

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2 replies
willows | @willows | Nov 8, 2022
In reply to @dach "Hi, my name is David, I was diagnosed with Limbic Autoimmune encephalitis 3 years ago. I..." + (show)
@dach

Hi, my name is David,
I was diagnosed with Limbic Autoimmune encephalitis 3 years ago. I had multiple seizures and spent over 7 months in the hospital. I have lost almost all of my memory. Is there anyone out there that has been diagnosed with limbic AE that I could help support each other. I am also on 16 pills per day and have 5 specialists that I see. Loosing hope.

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Hi David, I don’t think there is a connection to lichen sclerosis since the latter is a women’s disease. Hope you can find answers to your dilemma though. Good luck.

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 8, 2022
In reply to @dach "Hi, my name is David, I was diagnosed with Limbic Autoimmune encephalitis 3 years ago. I..." + (show)
@dach

Hi, my name is David,
I was diagnosed with Limbic Autoimmune encephalitis 3 years ago. I had multiple seizures and spent over 7 months in the hospital. I have lost almost all of my memory. Is there anyone out there that has been diagnosed with limbic AE that I could help support each other. I am also on 16 pills per day and have 5 specialists that I see. Loosing hope.

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Welcome David, I know it has to be difficult when you are diagnosed with a rare condition and not finding any answers. There is an older discussion that you may want to read through to learn what others have shared.

-- What type of encephalitis? Autoimmune, limbic, or encephalopathy?
https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis/
You mentioned you have seen 5 specialists. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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KateG | @gingerbear22 | Nov 8, 2022
In reply to @gingerbear22 "My dermatologist and rheumatologist agreed on a course of treatment to treat LS which pretty much..." + (show)
@gingerbear22

My dermatologist and rheumatologist agreed on a course of treatment to treat LS which pretty much covers my trunk. I took my first dosage of methotrexate (MTX) (2.5mil x 6) last night. To be taken once a week. Folic acid daily. Wish me luck.
I’ve also found a dermatologist in my area who does have UVb light therapy but is currently not taking Medicare patients. Her office told me to check back in April. I will. Maybe by then I’ll know if MTX is working.
Also, I did a self-referral to Mayo and was called by dermatology department within three days. They didn’t have appointment for me but did give me the contact of Mayo affiliate in Atlanta (five hour drive).

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It’s been nine months now on methotrexate. I’m now at 20mg/week. It seems to have calmed down all the extragenital inflammation and stopped any new plaques from forming. I’ve lab work done every three months. My body seems to be tolerating the dosage.
Now, to see a GYN for my vulvar region. More fusing going on. I had trouble finding my urethra!

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sspil5 | @sspil5 | Nov 8, 2022
In reply to @sspil5 "Wear cotton only , do not put underwear in the dryer w dryer sheets, I hadn’t..." + (show)
@sspil5

Wear cotton only , do not put underwear in the dryer w dryer sheets, I hadn’t dry. Don’t wear underwear to bed and cotton loose pj’s only . I’ve been told to only use Scott toilet paper which doesn’t have perfumes,
I’m headed to Dr today to discuss fraxel laser which in this case is called Mona Lisa laser. I’ll report my experience to all .

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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….

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1 reply
hensa | @shenne | Nov 9, 2022

I was put on Vagifem 10 mcg Tablet
Generic name: estradioL
INSERT 1 TABLET(10 MCG) VAGINALLY 2 TIMES A WEEK
(I prefer this over the cream inserted in the tube.

and

Triamcinolone acetonide 0.1 % Ointment
Commonly known as: KENALOG

Apply to the affected area(s) two times a week.
Then use an over the counter product like Vagisil other days if needed.
Negative Stress tends to make it worse. Wash the area daily without soap.

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1 reply
fdixon63 | @fdixon63 | Nov 11, 2022
In reply to @shenne "I was put on Vagifem 10 mcg Tablet Generic name: estradioL INSERT 1 TABLET(10 MCG) VAGINALLY..." + (show)
@shenne

I was put on Vagifem 10 mcg Tablet
Generic name: estradioL
INSERT 1 TABLET(10 MCG) VAGINALLY 2 TIMES A WEEK
(I prefer this over the cream inserted in the tube.

and

Triamcinolone acetonide 0.1 % Ointment
Commonly known as: KENALOG

Apply to the affected area(s) two times a week.
Then use an over the counter product like Vagisil other days if needed.
Negative Stress tends to make it worse. Wash the area daily without soap.

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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.

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2 replies
sspil5 | @sspil5 | Nov 12, 2022
In reply to @fdixon63 "To clean vaginal area I soap up my hand with coconut soap and gently rub the..." + (show)
@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.

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Ty, great advice .

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