Posted , 6 users are following.
Hi can one if you lovely ladies tell me if you have found steroids and creams don't help the soreness with linchen Planus of the volvua I'm fed up of keep going back to see my dermatologist and done get anything that actually works
0 likes, 21 replies
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SBBinALA Gillian1956
Posted
Clobetasol Propionate Ointment USP, 0.05% helps me. I am supposed to apply it every day.
As an aside, every night I sleep in cotton panties (of course) and a thin pad. If I don't, I can feel the
vaginal discharge and when it comes out, I have itching in my vaginal area.
anne13482 SBBinALA
Posted
Just a comment. I used to have a sore labia and odd problems for ages. By chance I read an article in a health supplment in the paper. It said cotton underwear, especially black, can cause labial and vulval problems. I was a bit sceptical - everyone wears cotton undies. Surely doctors advise it! But I bought some white mercale (soft, stretchy material) panties. Within a week problem gone and never came back. All the cotton stuff went in the bin. Also said for some women panty liners cause a problem too. It might be worth a try. Try ditching the cotton panties & liners for a week and see what happens. ..don't chuck the undies until you are sure. though 😃)
Gillian1956 anne13482
Posted
That's very interesting I always wear cotton I'm going to purchase some different ones and see how I go thank you for that information
SBBinALA anne13482
Posted
My dermatologist said to use Kotex brand liners because they are unscented. I have about 12 pairs of cotton panties that I get from the Vermont store that are great. They are Lollipop brand. They don't have elastic around the legs so they don't irritate the inside of my thighs .
anne13482 Gillian1956
Posted
Hope it works for you, Gillian. My sister has never worn cotton since ridding herself of vulval LP and its never come back in 2 years. I've been clear of my problems for, I think, about 5 or 6 years now. Do let me know how it works out. Good luck. Anne.
anne13482 SBBinALA
Posted
I think anything that suits, relieves, prevents or doesn't cause problems must be good. It seems very individual to each person. Glad something works for you.
Gillian1956 anne13482
Posted
Will do thanks again
Guest Gillian1956
Posted
I have another suggestion in addition to using Clobetasol. Do not use any soap when washing your vulvar area. I know that's difficult when taking a shower, as soap and shampoo runs down to that area. If that happens, thoroughly rinse that area with plain water. I take baths so don't have that issue. For cleaning my upper body and legs, I use Cetaphil Gentle Body Wash. For the vulvar area I use baby wash cloth and water. Regular wash cloths are too rough. Never ever use any product that is scented!
Sasr24 Gillian1956
Posted
I don't have it in that area, but I have had it really bad in my mouth for six years. I decided to take Mycophenolate four years ago, and for the most part, I don't even know I have it anymore, except I have to be extremely careful not to eat something super hot from the range or oven. Of course I cannot eat spicy foods, but that doesn't bother me because I don't like them anyway. You need to weigh the decision of taking this medication. For me it was a no brainer. I get regular blood work to check my liver, and I have had no side effects.
I hope this helps.
Gillian1956 Sasr24
Posted
what is MYCOPHENOLATE
Sasr24 Gillian1956
Posted
Autoimmune disorders are caused by our immune system, which is over active and attacks our bodies. Lichen planus is an autoimmune disorder. Mycophenolate is a medication that slows down your immune system. It is often given to patients who have had organ transplants so their body won't reject their new organ. You need to google it and read about it, and talk with your doctor about it. My dermatologist recommended it to me, and now my primary doctor prescribes it so I don't have to go to a specialist to get the prescription. It's a personal decision to take it. Yes, because you are lowering your immune system, you "might" be more susceptible to getting a cold or certain other illnesses (cancer included), but I have gotten sick maybe twice in four years, both times with the flu which was rampant at the time. I weighed my options and decided to go with the medication because I couldn't eat anything.
SBBinALA Sasr24
Posted
i don't want to be a "yes, but" person, but my dermatologist prescribed Plaquenil which is also an immunesuppresant and I had an awful reaction to it - red rash covering my entire face and red spots on my arms and legs. I have odd reactions to drugs so I was not surprised. My
derm. said there was nothing left for me to try.
Sasr24 SBBinALA
Posted
Hi SBBinALA, medications are different for everyone, and I've had reactions to pain relievers that no one else has, as well as estrogens that I cannot take. It's unfortunate, but we all react different to medications. Because my lichen planus is in my mouth, I can't do creams and other remedies, such as rinses and trying gluten free diet, etc. have not worked. I'm sorry there was a reaction for you because it's been a life saver for me. I still feel fortunate that this is all I have and Mycophenolate is the only medication I take. I am a vegetarian, eat little processed food and sugar, and work out regularly. I think a healthy lifestyle has helped me tremendously.
I wish you the best, and that sometime something will come along for you and the rest of us that is easier and more efficient for anyone with this disease.
SBBinALA Sasr24
Posted
Thank you Sasr24. I am really glad that you have something that works for you.
I wonder if any research is being done on L.P.
Think I'll Google it.
SBBinALA Sasr24
Posted
In case anyone is interested in a study for treatment of Oral L.P. here is a study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961895/
Gillian1956 SBBinALA
Posted
Wish there was a a study about volvua LP