Lichen simplex chronicus help!

Posted , 11 users are following.

So I have had LSC for over 9 years now and it progressively has gotten worse. It is now to the point where it effect my day to day life. Last night for example I slept maybe 3 hours total in between ice packs and creams. I have it on my female parts and it effects everything I do. I can't even wear jeans! I'm always in dresses and now with the weather changing I feel like I'm just going to have to constantly suffer through wearing pants. This is ruining my life. I searched through forums and can only find lichen sclerosis. So I'm hoping someone here can help me. I've been to allergists, dermatologists, gynocologists Etc. no one has an answer. Stop scratching- use steroids. Well that doesn't work for me!! It did 7 years ago but now it irritates it to the point where I want to rip my skin off.

I'm trying St. John's wort pill- on week 3 and was told to try for at least 6 so maybe? But if it doesn't work I don't know what I'm going to do!!! Has anyone cured this? The itch is unbearable!!! Should I eliminate food groups? Do a detox? See a holistic doctor? I feel like I'm screwed either way. 9 years later and no one can help me. I can't workout, I can't cuddle with my kids, I can't leave the house some days. It's insane!!! There has to be something to stop this itch! I can't handle it anymore. I'm tired, upset and at a loss of what to do. I would give anything to just sleep through one night of my life!

1 like, 14 replies

14 Replies

  • Posted

    I'm convinced that these skim issues are caused by staff infections or at least a secondary condition. Ask your Dr for antibiotics. Also Manuka Honey soap is helpful. I hope you feel better, sounds very stressful.
    • Posted

      Thank you I will look into the soap! Hopefully seeing doctor today and will also ask about antibiotic cream. Something has to work!!
    • Posted

      Hi, Kelly in a Long  reply I detailed every doctor and NHS department

       as I had visited.

      I'll had met a kind consultant ai the private Wellesley in Shoesburyness in Essex. Instead of charging me a lot of mone for taking the labia off,he wrote it down as biopsey and that cost me £63.that improved it a lot .it flare up in different places so l saw a nurse, she printed me off a three month plan using the cream for so long four four etc. Etc......please see it any of your Dr or nurses have this. If you are on the right cream you will notice the easing up an about. What cream have yo got..?

      I can print of the 3 bits of paper for u to follow, but Follow it.

       

  • Posted

    Katie, I have never heard of this illness before, but I am so sorry to know you are suffering like this. My best advice to you is to look for more doctors, specialists, and not necessarly close by.  Why?  Two good reasons.

    Firstly, many years ago, I knew a woman who was having weird symptoms.  She saw many doctors in her area, but none was able to diagnosis her and help her.  She used to be a nurse, and she really thought that perhaps she was dying.  She began expanding her search area for doctors.  She ended up leaving the state to seek medical advice from other doctors.  She eventually ended up in Boston where lo and behold, she was finally diagnosed.  She had Fibromyalgia.  This was in the days before it was widely known, and before it became a wastebasket diagnosis.  She found help and started to make progress although of course was never "cured."  She did find a manageable life, however, after she was properly diagnosed and treated.

    Secondly, I know another woman right now who has been complaining about the most horrible leg and back pain for years and years.  She went to many doctors, but none helped her.  Usually, she was just told to "lose weight."  True, she was overweight, but she was not so overweight that it could cause the type of pain she described to me.  Anyway, she finally saw a doctor within the last few months who really took her seriously and sent her to specialists for a lot of testing to be done.

    Turned out she is very ill.  She has a degeniritive bone disease, compressed discs in her back, and now they found something in her colon that is being biopsied.  I cannot help but think that if only the doctors she saw for years had really taken her symptoms seriously, she may not be in this situation now.  She is only fifty-three years old.  It is so sad.

    The upshot is that most doctors are not worth the ink printed on their licenses, and I am afraid the situation is only getting worse.  The people I have seen in the last few years who are getting into medical school now could NEVER have gotten in thirty years ago or even twenty years ago.  The schools graduate them now, and then they are let loose on the public, and most of them are useless.  If you want to find a really good doctor, one who can fully diagnose you and help you, you must be willing to find him/her, and that may mean leaving your city and/or leaving your state.  Some of the better doctors in the country are in Boston.  If you can find some specialists there with whom you can make an appointment and go, then you may finally find help.  Given the way you are suffering, it is worth the money to go to Boston or wherever you must in order to find help.  Good luck!!!

  • Posted

    Hi Katie,

    For now, try being patient with SJW. As I mentioned before, it may even take more than 6 weeks to feel the benefits, as other people I have helped started getting their sleep back after only 12. It's not because I was successful in only 6 weeks that it will be the same for you. And because everyone reacts differently to medication, in the end, it is also possible although unlikely that SJW won't work at all.

    You would have to be extremely lucky to fall on practicioner, whether conventional or alternative that would have the instantaneous solution to LSC. The science is just so incomplete at the time. But we have to go with what appears to be most probable at the time, and as you have read by now, Staphylococcus Aureus has to be the most likely culprit for a majority of patients. And if that is indeed the case in your own condition, such an infection is tough-to-beat and we can only hope your body's immune capabilities along with the help of SJW's antibiotic properties will eventually gain the upper hand.

    If you want to consider other substances that might help combat resistant strains of SA, you may want to read about other natural molecules that may work better in your particular case. For example, I have read that Berberine (which is found in Golden Seal as well as many traditional herbs from Chinese medicine) may also be helpful.

    Otherwise and as you already know, you are probably limited to the conventional band-aid like treatments of conventional medicine that include various steroid-based creams. They did nothing good for me over 20 years, except temporarily help relieve the itch.

    I wish you courage!

    G

    • Posted

      Thank you greg. I know you are right. Doctors have done nothing for me. They won't look past steroids. I definitely will not give up on the SJW I'm very hopeful that it will work. Just having a tough time with managing the itchiness of this. Today is better than yesterday so I guess that is better than nothing. thank you for your words and support.
    • Posted

      Hi Katie,

      It's been quite a while and I'm curious to know if you have seen some success with SJW and if you have been carrying on with the treatment this far.

      I have seen some really positive effects for a few other people who have been very patient with the treatment, on another forum. One of them has now reached 10 months of treatment and claims to be 90%-eczema-free, and keeps on taking his daily dose of SJW in hope of getting rid of what little remains of the disease. He says SJW has changed his life.

      Hope to hear from you whatever the outcome may have been.

       

    • Posted

      Hi Greg,

      I have had no luck. I even tried the elimination diet. I'm just as miserable and feel like no one will ever be Able to help me with this stupid lsc.

      I unfortunately had to go back to steroids which helped but gave me serious anxiety so I had to get off of them. Fun fun.

      I'm tempted to try sjw one more time. I no longer take it- I stopped after about three months with no results.

    • Posted

      Hi Katie,

      So sorry to hear about your trials and tribulations with LSC. It's just one of those ugly diseases anyone would do anything to get rid of... I've been there and is was no pic-nic.

      Well I sure hope SJW may he helpful this time around... Perhaps it will work out with more patience or a higher dose. I am of course clueless as to why it seems to work so well and quickly for some, and not at all for others. Maybe it has to do with the type of damage on the epidermis. Who knows? But I'm truly puzzled that it wouldn't even offer partial relief given all its medicinal potential.

      All I can say is best of luck!

      G

    • Posted

      Thank you Greg. It didn't give any relief- tried the oil too. Maybe a higher dose would work.
  • Posted

    I truly tell you from past one year I am also affected by this I am a male and this scares me when night time comes. But I think I will get cure becoz doc told this only happens while you sleep and while you take more tention or anxiety.

    So what I suggest is that do not , note do not take tention or more pressure even if you are working professional also.

    Take citrizen tablet at night one and use one lotion named ELCON .

    First you boil a little amount of water and then soak a cotton mix the lotion and then apply on the area and keep it tied by some tape.

    Remember you need to change the tape by every 24 hrs.

    I am sure you will cure.

  • Posted

    Hi Katie, I am experiencing the exact same thing as you I've been bed ridden for two weeks now it's so bad I forced mysejf to go to work some days in torturous pain I cry every day putting on the steroids burns so bad we should keep in touch and help eachother let me kno how yours is doing thankyou

  • Posted

    hi Katie

    i have also been suffering with LSC for the last 19 years, during that time it has fluctuated in severity. i couldn't say that i've noticed any particular reason for a bad run of it except it definitely gets worse when i am stressed, i think that's true for any skin condition. i managed mine wit steroid ointment but that's not great, there was one thing that worked though which was gabapentin, an anti epileptic drug. the problem with that was though it made me a bit of a zombie and if i didn't have a professional job i think i could have stuck with it but i stopped taking it as i was finding it hard to do my work. apparently here is another drug similar with less of those side effects which i plan to try out called pregabalin. failing that exercise even when you feel like you cant as it actually has beneficial effects if you stick at it. Anyway i hope some of what i have typed helps, i know what a complete misery this condition is, before i hot it i was bubbly, active, confident, these days it is a struggle to get through each day. good luck

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