Vaginal pain Lichen Planus

Posted by painfulplanus @painfulplanus, Jan 20, 2019

Anyone have suggestions for vaginal pain caused by Lichen Planus – Anyone use CBD OIL

@cs9274

I have recently been diagnosed with Lichen Sclerosis and am using Clobetasol Propionate Cream. Would you share your experience with this disease?

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I am sorry you have been diagnosed with Lichen Scletosis.

I have had Lichen Planus and Sclerosis for over 35 years. It started in the
soft tissue of my mouth, I have had it Vaginally for almost as long. I now
have skin issues that leave large brown spots, mostly on my legs! I have
had many treatments but most effective was the systematic Prednisone but I
cannot tolerate that now!

I use topical Clobetasol Propionate Cream on my skin lesions, mouth
lesions, and external Vaginal Tissues, two weeks on/ two weeks off treating
up to 4 times a day. Off treatments I use once a day. It has managed the
pain most of the time.

Once a month require shots of small dose prednisone into the inside of my
cheeks. As a rope like lesion continues to be swollen and most painful
unless treated. Which can affect eating.

This disease has less medical interest because we are a small population
about 2% of the total has our autoimmune disease. Doctors and dentists who
have family members that have this Autoimmune Disease have been most
helpful to me. I was taken off of all dairy products 1 year ago (avoiding
all dairy and dairy protean) 99% of my skin lesions have stopped.

I take Hydroxichloquine and Celcept but the Celcept is causing me great
gastro issues so will likely no longer take that.

Most of the time I can tolerate the pain I go about my days. I exercise
strenuously 6 days a week. I vary my routine I don’t know if it helps my
disease but it does improve my attitude and zest for life.

I am 77 so take hope and courage that you can carry on. You will be able to
find help, and you will find caregivers who care!

Continue to search for Doctors that have more than a textbook knowledge of
this disease.

It will get better!

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Thank you very much for your reply. I just found out that my first cousin has had it now for two years. I wonder if it’s genetic? I’m in the stage of “freaking out” right now because I just found out this past Wednesday from my primary and Friday from my dermatologist. Soon I will go to a gynecologist and get her exam results to see how and where it’s spread. I’m really scared but am encouraged by your answer. What is your pain like re the Sclerosus?

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My pain level can be quite high if I think I am well. It is difficult to describe. It burns, feels hot, sometimes itches. But it is not constant. I like to think that my pain level is less when I work out strenuously. I think maybe it increases the blood flow to the effected areas. Finding a caring physician is essential. On a couple of occasions the pain was so intolerable that I called the physicians emergency numbers. I was very lucky to have some caring dental, Oral Medicine, and Dermatologists who have been so helpful when the pain is too much to handle. Don’t give up and keep communicating with your care team. Ask them what you should be doing. If they cannot help as for a referral. I must admit I have not been trilled by the gynecologists help. One even told me I should have a hysterectomy. I asked for a second opinion. The second Dr said. I don’t know what this is…..but it is not cancer…and if you were my wife I would wait and see. (I was 44 the and I am 77 now. I believe it can be managed, but not cured! Ask your care providers for the help you need.

REPLY
@maryz

I am sorry you have been diagnosed with Lichen Scletosis.

I have had Lichen Planus and Sclerosis for over 35 years. It started in the
soft tissue of my mouth, I have had it Vaginally for almost as long. I now
have skin issues that leave large brown spots, mostly on my legs! I have
had many treatments but most effective was the systematic Prednisone but I
cannot tolerate that now!

I use topical Clobetasol Propionate Cream on my skin lesions, mouth
lesions, and external Vaginal Tissues, two weeks on/ two weeks off treating
up to 4 times a day. Off treatments I use once a day. It has managed the
pain most of the time.

Once a month require shots of small dose prednisone into the inside of my
cheeks. As a rope like lesion continues to be swollen and most painful
unless treated. Which can affect eating.

This disease has less medical interest because we are a small population
about 2% of the total has our autoimmune disease. Doctors and dentists who
have family members that have this Autoimmune Disease have been most
helpful to me. I was taken off of all dairy products 1 year ago (avoiding
all dairy and dairy protean) 99% of my skin lesions have stopped.

I take Hydroxichloquine and Celcept but the Celcept is causing me great
gastro issues so will likely no longer take that.

Most of the time I can tolerate the pain I go about my days. I exercise
strenuously 6 days a week. I vary my routine I don’t know if it helps my
disease but it does improve my attitude and zest for life.

I am 77 so take hope and courage that you can carry on. You will be able to
find help, and you will find caregivers who care!

Continue to search for Doctors that have more than a textbook knowledge of
this disease.

It will get better!

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Thank you Maryz for sharing your experience.
Tomorrow I will go to an allergy clinic to see if any food allergies are contributing to the pain/discomfort of my vaginal lichen planus.
I have been seeing a dermatologist (who specializes in lichen planus) for about 9 years. But, as previously mentioned my body's
reaction to the steroid (Triamcinolone) that had controlled the VLP changed.
So, I thought it would be wise to eliminate any contributors to my pain before I move on to a next step.

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I definitely think you are making a wise choice!

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@maryz

My pain level can be quite high if I think I am well. It is difficult to describe. It burns, feels hot, sometimes itches. But it is not constant. I like to think that my pain level is less when I work out strenuously. I think maybe it increases the blood flow to the effected areas. Finding a caring physician is essential. On a couple of occasions the pain was so intolerable that I called the physicians emergency numbers. I was very lucky to have some caring dental, Oral Medicine, and Dermatologists who have been so helpful when the pain is too much to handle. Don’t give up and keep communicating with your care team. Ask them what you should be doing. If they cannot help as for a referral. I must admit I have not been trilled by the gynecologists help. One even told me I should have a hysterectomy. I asked for a second opinion. The second Dr said. I don’t know what this is…..but it is not cancer…and if you were my wife I would wait and see. (I was 44 the and I am 77 now. I believe it can be managed, but not cured! Ask your care providers for the help you need.

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maryz- I understand the symptoms of feeling like your tissue is burning, hot and at time itchy. I dealt with this for over 15 years and even with good medical nothing helped for long. I did not have typical yeast issues with discharge or test positive for yeast in vagina, but never did have the vulvae biopsy. Last Oct 2019 went on an anti-inflammation diet I already mentioned in this discussion. It is mainly giving up processed sugar for life along with other foods that raise inflammation. I began getting results within 6 weeks, after 3 months symptoms better but still some swelling and discomfort. For the last 3 months will tell you the difference is dramatic. My tissue swelling is completely gone, all redness gone along with discomfort in any form. I had dealt with vulvae issues for over a decade and now feel youthful. When reaching for processed sugar or eating more than a small piece of fruit daily tell yourself, "When will you learn, it's going to make you burn". Relief from pain is a big motivator in self discipline. I agree that this condition is chronic, it will return if I resume if I eat sugars.

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