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bpcookie posted:
I have Vulva Lichen Simplex Chronicus. It causes me to have constant burning pain of my entire vulva area, labia minora (sp), inner labia majora, my buttock and inner thighs. I have had this for two years. I have tried ointments, oils, pills, suppositories, procedures and injections and everything has failed. I'm still looking for the answer.

Sometimes I get extremely depressed and will lay in bed bawling. Sometimes I think there is no hope and I can't imagine living with this forever. Most of the time I try to stay positive. Most of the time I even have a sense of humor about all of this.

I have so much that I would like to add but I would like to hear your stories and see what we have in common. Perhaps we can help each other.

signed

The Burning Bush
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50andconfused responded:
I have been having the pain and swelling for going on 6 weeks, was treated with bacterial fighting creams and told to use cold compresses. I have now been tested twice in same period for stds now awaiting the last results. First go around said all was negative. I already suffer from depression and was being treated effectively until I lost my insurance and now can not afford any of my meds and have no one to talk to about any of this. My so called friends have deserted me. I like you find my self crying a lot lately. I am to old to be worrying about what I might have caught. I am tired of Dr. that just says they are sorry for putting me thru the pain of the scrapping and tests lately and told to just use a cold compress. I work in a call center on the phones all day and can not sit with a compress down there during the day. I am ready to give up.
 
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bpcookie replied to 50andconfused's response:
Oh Hun, Don't give up!!! I have felt like you. There are times that I just want to give up as well. I will get depressed, start bawling, laying in bed thinking there is no help for me and wishing that I would die. Of course I would never take my own life. Then the next day I will be pissed off and I will want to fight this. Want to find a treatment that works. I won't stop looking.

The best thing you can do is google your symptoms. Try to find what it is that you have. Then start trying to find all the different things that other women have tried to treat their issue. There is an answer out there, we just need to find it.

There are thousands of other women who are going through the same pain. They have tried all kinds of meds, treatments, oils, ointments, diets, procedures and even surgery. So your not alone. Besides, you now have me to talk to. I will do my very best to be supportive. Sometimes my pain gets so bad that I can't sit at the computer, so at those times I won't be on this board.

The pain that you have, is it sharp, burning or something else? Mine is burning and what I use is A and D baby ointment. I keep that on my vulva at all times. I don't use a cold compress but I do sit on an ice pack. Also I take Lyrica. You may want to ask your Dr. about Lyrica and see if they think it will help you. Since you can't afford your meds, then call the company that makes them and tell them about your dilemma. Sometimes they will send you coupons or even free medication. You may want to try taking oatmeal baths, warm watter, not hot. You can pick it up at CVS.

Also, if your unable to sit down at work, then you may want to go on SSI Disability. With my Vulva Lichen Simplex Chronicus, there is no way that I could work any where. So you may want to think about applying for that.

You take care of yourself and try not to feel hopeless. We will find an answer. So hang in there and post here as often as you want. hugs to you
 
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jetaslife responded:
I was born with lichen simplex on my left side of the vulva. i am 30 and all my life i have been dealing with it. only at the age of 28 i was diagnosed right and now i am going threw treatment . i was told i have HPV, mushrooms, psoriasis and in the end cancer...i was at the point of killing myself cz i could not even walk. I went to a bunch of high respected doctors dermatologist in Asia, Europe and us and Canada....and now i see Libby Edwards in Charlotte NC. Not only its almost gone, but i almost don't itch at all (only when i am on the favorite time of the month) and i can walk again. When i look at it now - you only see a little scar.
At its worse point it was 3 inch thicker then on the right side and it was very hard, full of blisters of blood and yellow discharge.
what to do : wear cotton white only ( to see symptoms), chamomile tea water to wash, and freeze the bags to put on area when really itchy, Try not to itch, sleep with no underwear, use tampons,use paper towel instead of pads for discharge or to keep dry or when sitting on leather or other materials other then cotton or linen, use Vaseline cream on area to keep moist and protect from pee.
Avoid: eating tomatoes, coffee, no latex, condoms, heat ,wet, lotions, wash with natural body washes. Never peel the area the more you peel and scratch the more it will itch ( yes i know its easier to pull your eyes out, then not to itch that area but try) hope this helps .

with my broken English- Jeta
 
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jetaslife replied to jetaslife's response:
I forgot to say this- Dr. Libby is the best not only she is good but cheap also and takes medicaid. I do use thinning steroid ingestion and cream- this month Dr. Libby gave me the cream for free- which is expensive and hard to find . You only find it in USA and some parts of the world. If you do not have $ she will work with you. All my life i was in pain and i was in a very bad condition in the end. i got 50 % better in 4 months. I live in Charlotte and will not move just because of Dr. Libby.
Hope this info helps and you all get better like me.
 
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bpcookie replied to jetaslife's response:
Jetaslife hun, I thought I had it bad because I have had it for over two years, but you having it since birth is absolutely horrible. I don't know how you made it this far. I would have lost my mind. 3 inch thicker is unbelievable. How awful for you. I understand the wanting to die feeling. There have been times when I wanted to die. Not kill myself but wishing that I would get hit by lightening. Knowing my luck, I would survive. aaaahhhh

I don't have an itch at all, what I have is the burning. Constant burning burning burning. Never ending burning. I can imagine how terrible it must be to have a constant itch. You poor thing.

Instead of Vaseline I use A and D ointment which protects the skin from wetness. I also sit on an ice pack. I'm 48 yrs old and peri menopausal, so I don't have my periods anymore. Having a period once a month must be agonizing. If I have any wetness down there, sweat or pee, it makes it 10 times worse. I live in Az. and its really hot here. In the summer time I can't stand the pain. I have a pillow case on my computer chair, it helps a bit with sweat, also I have a fan under my computer desk pointed right at my vagina. I don't wear undies anymore, I wear only skirts. Ive changed my body wash and laundry detergent to the sensitive skin kind with out perfumes or dyes.

Next week I have two procedures scheduled to burn the nerve endings. I am hoping it works. Of course I will let everyone know if it does work.

Can you tell me what the cream is called? Im so glad that you found a good Dr. and your doing better now. You have a happy ending story that any women with this would want to have.

Thank you for joining my support board. hugs
 
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bpcookie replied to bpcookie's response:
Hey Jetas, I also wanted to ask, do you get a white discharge? Because I get this pure white discharge that looks exactly like lotion. Its not an infection. So I'm thinking that it is related to the VLSC.


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