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

Hello @painfulplanus, welcome to Mayo Clinic Connect. There is another active discussion where your post may have more visibility here and you will meet other members discussing lichen planus like @alpaca, @wisgrama, @elizabethbryant, and others:

Groups > Autoimmune Diseases > Erosive oral lichen planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Here are some more sites that may be helpful for treatment options:

Cancer Therapy Advisor – Vulvovaginal Disorders: Lichen Planus
https://www.cancertherapyadvisor.com/obstetrics-and-gynecology/vulvovaginal-disorders-lichen-planus/article/618152/

The Royal Women's Hospital – Lichen Planus
https://www.thewomens.org.au/health-information/vulva-vagina/vulva-vagina-problems/lichen-planus

Has your doctor offered any treatment suggestions?

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Hello@painfulplanus Lichen planus is a very difficult condition to suffer from. I had it for years in my mouth and have a little bit of it again. Steroids help but are not recommended long term and surgery can be a fix if the LP is narrowed down to one area or one lesion. CBD is not yet legal in my country. I guess it might help the pain but it is also the inflammation that you need to reduce. Has your medical centre come up with any suggestions? Hope you find some relief soon.

Liked by Dee

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Please don't seen any more e-mails to many in one day

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@kneeta

Please don't seen any more e-mails to many in one day

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Hello @kneeta, welcome to Connect. I'm sorry you are seeing too many emails. It's easy to stop. When you receive this email, click the Unsubscribe link at the bottom of the email message you received. You can also click the View & Reply button and scroll to the top of the discussion and click the +Following to stop following the discussions and not see any new emails when members post to the discussion.

Liked by Dee, lioness

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@johnbishop

Hello @painfulplanus, welcome to Mayo Clinic Connect. There is another active discussion where your post may have more visibility here and you will meet other members discussing lichen planus like @alpaca, @wisgrama, @elizabethbryant, and others:

Groups > Autoimmune Diseases > Erosive oral lichen planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Here are some more sites that may be helpful for treatment options:

Cancer Therapy Advisor – Vulvovaginal Disorders: Lichen Planus
https://www.cancertherapyadvisor.com/obstetrics-and-gynecology/vulvovaginal-disorders-lichen-planus/article/618152/

The Royal Women's Hospital – Lichen Planus
https://www.thewomens.org.au/health-information/vulva-vagina/vulva-vagina-problems/lichen-planus

Has your doctor offered any treatment suggestions?

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No… just looking.

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Hi @painfulplanus …have you ever tried Emuaid? It’s expensive, but works!

Liked by Dee

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I've had Lichen Planus vaginal or as my Dr. called it Lichen Sclerosis , and I've had it for many years. I used Clobetasol as Rxd by Gyno and it got me thru. As with all Lichen.. it so hard to get under control. The Clobetosol did relieve the pain and burning immediately. But as always it does come back. Maybe there's something new out there today. I would suggest you talk to your GYNO. Good Luck
and prayers sent.

Liked by Dee, grammlyn

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I wasn't diagnosed with lichen planus but my vulvar symptoms were similar and there may be a tie in. My vulva area was red, burning and and painful. For me it was based on several issues,making it more difficult to diagnosis.

Ideas when all else fail.

1- I did learn I had Allergic Contact Dermatitis, ACD and results from the 5 Day Extended Patch Test proved I was allergic to many chemical and even natural ingredients in my soap and even my toilet paper with softening agents. Avoiding those improved the intensity of my symptoms. Yet something more was going on.

2-I didn't test positive to yeast in the vagina with the swab test yet I found an OB who believed my vulvar symptoms were based on internal yeast living in the tissue of the vulva, it could be biopies but said that was painful, healing was slow and had other ideas to try first. Of course I did rounds of anti-yeast meds, and symptoms improved for a while only to return. This OB recommended I start reading about anti-yeast diets. She said women tend to have yeast living and breeding in our intestines and they must be starved from the foods that keep them alive. Killed out. Yeast raises inflammation because our histamine warriors are battling it, trying to kill it off and this raises our inflammation. For many women the vulvar tissue is targeted. I resisted this diet as it is a 2 month minimum detox of all sugar (natural and processed) and all carbs. It's a bit more complicated, yet that is the basically it. I also took a few anti yeast herbals. If you are miserable enough you will be willing to make this sacrifice. Yes you will crave sugar and go though sugar withdrawal. The starving yeast send messages to our brain to be fed and thus the cravings. Just like a junkie who wants his opium goes though withdrawal because of cellular messages being sent to his brain demanding a fix. It is not immediate. At 6 weeks I noticed a major improvement. After 2 months I was dramatically improved. Still zero processed sugar for life. Limited fresh fruit, a few small servings a week. No nightshade foods (yes that even includes potatoes). Limited carb servings, no gluten or potatoes. Lots of meat, poultry and fresh veggies (no nightshades). Nuts like almonds and walnuts (no p-nuts). Now going on 4 months I feel the best I have for a decade. My mouth doesn't water looking at sweets as the serious craving has died off. I bake for my family, serve them ice cream and so on and my mouth no longer waters looking and preparing these foods. Yet I know if I too one bite I would keep going. I should also mention no alcohol, yet I quit drinking 3 years ago so going though that withdrawal was past me.

Liked by Dee

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If my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.

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@sausalito

If my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.

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Welcome to Connect, @sausalito. Here’s some information from Mayo Clinic, about Plaquenil: https://www.mayoclinic.org/drugs-supplements/hydroxychloroquine-oral-route/description/drg-20064216

I’m tagging @tarahbeth @kimdett @naomisantiago06 @tdani75 as they’ve written about Plaquenil in various discussions on Connect. I’d also like to invite @mariannj @dazlin @sharsharlee to this discussion, for their thoughts about Triamcinolone.

@sausalito, if the prednisone does help, would you still consider starting Plaquenil?

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Becky, I would not take Plaquenil if the prednisone helps. I am primarily concerned with my eyes. I have had retinal laser treatment 7 years ago.
I am looking for other alternatives: Possibly going to an allergist. Thank you.

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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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@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.

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