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lichen sclerosis anyone? lichen sclerosis anyone?

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Unread 01-26-2004, 02:44 PM
lichen sclerosis anyone?

hello hystersisters, its been a long time that i have posted anything, probably july or august of 2003 was my last post. some may remember me..i was starving to death because i have a bladder diease called interstisial cystitis and cant eat because of it. everything affects my bladder. i cant ake any meds what so ever becuase since my hysters almost 2 years ago i have become chemical sensitive to all drugs. as of the last time i posted i never got the proper help for my ic(bladder diease) no one can help me and treatments failed. i still eat only three things. bread and noodles and a little meat. how i survrived this long only god knows. i wear a size 0 pants. my newest diagnosis is called lichens sclerosis. it is a skin diease in the vuvlar area. constant itching, burning, rawness. its 24-7 around the clock. i went all the way to boston mass to get diagnosed with this thing. billed 774.oo and the dr gave me a steroid ointment and i couldnt use far i havent found one thing that works to stop the itching and burning. everything i used so far makes it worse and worse. i am out of my mimd with this..has anyone ever heard of iit? does anyone have it? steriods dont help(topicals) it feels like a yeast infection but its not. its located in the clitorial area. it is maddening. i dont know how ui have survived these almost 2 years since my hyster. the problems i have encountered are in human. and the physchological damage i have suffered as well as emtional from all of this is pathectic. again i cant take any meds at all. nothing. i suffer severe anxiety because of lack of nutrition because of my bladder problem..not being able to eat.. i havent found one dr that can help me with anything...they say i am too complex and have so many problems where do they begin..for a person not to even be able to take a vitamin is like an inigma to them. can anyone help??? thanks a bunch..angel
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Unread 01-26-2004, 10:55 PM
hard to believe

you have been through such a difficult road and end up at this point in such a state of health.

I wish I could offer you offer you hope but it's out of my knowledge. I don't know how you can 'reset' your body to stop overreacting to anything and everything.

Are your reactions life threatening, painful or just set you back again? The only thing I can think of is aloe vera but without knowing how you react to tests, this may be useless. I know that it can help internally and externally but for you, very dilute would be the way to go.

Perhaps some other sisters may be able to offer suggestions, but please keep posting to let us know how you are and that you won't be alone on this site. Gentle hugs, Linda
Unread 01-26-2004, 11:41 PM
lichen sclerosis anyone?

(((angel))) I'm so sorry you've had such a hard time, I was hoping we hadn't heard from you in a while because you were doing better. We've had a number of ladies here before with lichen sclerosis... here are a few threads you might want to take a look at:

Testosterone cream locally applied seems to be the treatment of choice. Have you tried that yet? A compounding pharmacist can make some for you with a hypoallergenic cream or gel base. Or, is there a lotion that your skin does not have a bad reaction to? They can even make it up in that as a base.

Another thing that might be worth trying is to see a homeopathic DR... sometimes they can do wonders with people who are reactive to lots of things either in their environment or in their bodies. This link might help you to find a homeopathic DR in your area if you want to give that a try:

Are you also seeing someone to help you deal with the emotional side of what you've been going through? I can only imagine how rough it has been for you. I hope you have had the support of those around you, and you know you can always come here, too.

Take care and I hope this helps.
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Unread 01-27-2004, 07:58 AM
lichen sclerosis anyone?

{{{{{{{{Chris}}}}}}}} Sending you big s. I was just asking silverfern(Lynne) how you were doing since you haven't posted in awhile. Please take Linda's(surferbabe) advice. I will still continue to pray for you my dear sweet PA friend. Don't give up..........there has to be answers for you. God Bless.....

Unread 01-27-2004, 09:10 AM
lichen sclerosis anyone?


I've wondered how you were doing, and was saddened to see your latest news.

Do you have a gastroenterologist? You may be a candidate for a different type of nutrition, known as parenteral nutrition, to give your body time to adjust. I also echo (((Linda's))) recommendation of homeopathy -- or look into a practitioner of Chinese medicine. Increasingly, many insurers will at least partially pay for this sort of therapy.. It seems to me that your body has become chemically totally imbalanced, likely due to a combination of your currently poor nutritional state and underlying diagnosis (IC). Chinese medicine addresses just these sorts of imbalances.

Lichen sclerosis seems to have an auto-immune origin (gee, what a surprise ) like so many other conditions that you've been dealing with.

Have you looked into being seen at a university teaching hospital? Sometimes patients with multiple, complex problems such as yours aren't really best treated in a small community where doctors are not accustomed to complicated, multi-disciplinary issues like yours. But the teaching facilities, even though they may require some travel, might have the experience and resources to help bring you through this and back to some kind of balance. Your home doctors can refer you to the nearest facility.

A gastroenterologist would be able to work on improving your nutritional status -- this is going to require some creative working with doctors and dietitians. But it does become a vicious cycle if you can't improve your nutrition, even if it's by IV feeding (which can be done at home -- most of my kid patients are in school and living normal lives, other than the fact that they don't eat but are "fed" differently -- and my own DD spent the first two months of her life being fed in this way).

You've been in my thoughts; I was concerned that your silence was due to the fact that things had worsened for you. I know what it's like to be unable to eat your normal foods but still be responsible for feeding your family -- it's very frustrating. They've come out with a new commercial for Nexium -- have you seen it? -- where a woman is circulating with a plate full of hors d'oeuvres and comes up to this man, saying, "these are so good" -- and all he can think is "this will make me so sick". That's how I feel myself about many of my previously enjoyed foods.

Keep in touch, and let us know what you're able to work out with your doctors, OK?

Unread 01-27-2004, 03:43 PM
thank you all for answering me

thank you all so much and it is so good to hear from you again. i will look into all of the suggestions that have been made. i was told by my gp that university people usually can help. the chinese suggestion is very interesting. if i has anything to do with acupuncture though that is out. i have severe nerve damage from my 2 car accidents and any type of contact such as that is devastating for me. i tried it once. it gave me restless legs. anyway i was supposed to start college to become a pyschologist last week and couldnt even start. i was so excited. i htought this wouls keep me busy. but the way i feel i would of only ended up dropping out. i havent been on the site for so long because i was trying so hard to give it a go on my own. i felt there wasnt anything anyone cna do for me or tell me anymore because i am so complex. these drs bluntly say I CANT HELP YOU AND THERE ISNT ANYONE ONE OUT THERE WHO WILL OR CAN! such hope huh?i have sunk into such despair over all of this. my marriage is suffering because all of this. i have been every where, to every dr and not one of them shows any concern about my malnutrional state. on top of this i have nerve damage called vulvodynia on top of the lichens. the dr in boston mass said(she even wrote a book) she isnt even sure what is causing what and said my dear i just cant help you! and she is top of the line. she has helped pople all over the world. she said i was the first person she couldnt help and never saw any thing like the things i have because they are all intertwined and so complex. i dont know how i am still here. honestly i dont. but thank you all again sooooo much. i feel better knowing i came back here. i do need an iv to feed me but i need a dr for that and at the moment i dont have insurance anymore. i had my own but it ran out and i am waiting for my husbands job to pick me up on his which i heard can take up until november. i had govt..asst insurance. i will try all these avenues though to see where i can get...chris
Unread 01-27-2004, 05:59 PM
lichen sclerosis anyone?

I've been doing accupuncture for a few months now. It's my understanding from talking with the doc that accupuncture may actually help to regenerate the nerves. Accupuncture is not a one time deal, it can take months, even years for it to benefit you. It all depends on how long the damage has been there and how long you have been hurting. Interesting that since I started my hyst scar is literally disappearing!

I have felt some relief, I still have a VERY long way to go. My doc says that I have been her most difficult case but she really feels that she can help. I have noticed a big difference. I still have good and bad days and still have pain and swelling to deal with, but I feel as if I have the strength to deal with it again. I didn't get to this point overnight, it makes sense that healing will not happen overnight.

Good luck! I hope you can find some answers and some relief.
Unread 01-28-2004, 01:59 PM
lichen sclerosis anyone?


I too was hoping that you had found the off ramp to wellness.

Telling you that you are the first patient she could not help is absolutely inappropriate. What was that supposed to accomplish? Sounds like she needed to reassure herself instead of her patient. You deserve better.

I hope you will be able to look into some alternative treatments. Sometimes traditional physicians don't have anything to offer us and we must look at all the alternatives.

I will pray for a special angel to help you on your journey. We all care about you and hope that you will find a path to wellness soon.

Keep us posted.

Unread 01-28-2004, 02:26 PM
lichen sclerosis anyone?

Dear Cris,

I think ((linda's)) suggestion of finding someone to talk to about all your problems would be very helpful. I mean you can always come here but there are people who specifically train to help people learn how to cope emotionally with chronic diseases and illness.

I saw a counselor several years ago and it helped me tremendously. While it has no direct affect on the physical problems, I do believe that some of the skills I learned have helped me cope better which lowers my stress which I do believe impacts my physical problems.

Perhaps when the top doctor in Boston said she couldn't help you it was because she had nothing left in her "bag of treatments" for you to try.... seeing as how you are allergic to so many things... Maybe that means you should seek out some alternative types of doctors and see what they can offer.. like Audrey and Kim mentioned. Anyway, just some thoughts.

I hope you find an answer.

Unread 01-30-2004, 10:55 AM
thank you again

to all that recently replied..... thank you all so much... for the understanding and prayers. my husband brought me home bee tablets. he read that jelly from bees and honey heal people. god love his heart! anything to try to help me. anyway an innocent thing like that i cant even take. i cut a little piece of the tablet off and took it. just a tiny piece..well here it is a half hour later and my heart is pounding like crazy and i am itchy!!lol! i am not even allergic to bees. but good god a natural substance like this, and not even this i can you guys i think get the full well as before..this is how sensitive my body is to everything..does anyone know why this has happened after my hyster..what did the hyster do to me that caused this..especially if i never ha this problem before in my life..does it ever go away..if i could take meds i wouldnt even be typing this i would be healed and better and yippee yiyaying and dosey doeing all around town here.the problem is i cant use meds topically or take them internally. if i can fix that problem or find a dr who could help me i will be set for life(well almost).........thanks again always..chris

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