Lichen Sclerosus

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I was recently diagnosed a couple days ago with Lichen Sclerosis and I'm very nervous about what's going on. I think I initially made things worse by scratching and now it's very painful down below. My Gynecologist gave me a steroid cream but it didn't seem to help the itching so I immediately switched back to Cortisone 10 and have been kind of waiting it out. My pubic hair is beginning to grow in and the hairs around the edge of my lips seem to be causing a great deal of discomfort. Has anyone had this issue? I'm so nervous about all of it that any words of encouragement or tips would be greatly appreciated! 

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  • Posted

    I have just replied at length - it was deleted by a sudden movement of mine Grrr!

    To start again:- Do watch the folllowing lecture it takes an hour but it explains a lot  and give helpful advice- it is a must for all newbies to the site.

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    Bathe in  warm bath 20 minutes pat dry/ GENTLY massage in your POTENT steroid for 90 seconds - a pea sized amount will be absorbed in that time Wait 20 minutes then apply your moisturiser  and then a barrier ointment - like vaseline. Do this at the levely your prescription suggests - if it doesnt then daily dropping down to x2 pw - but continue withthe moisturising and barriers

    The aim IS to reduce the thickness of the tissue- that has been thickend by the LS, (and blocks absorbtion of the therapeutic ingredients of the ointment.) then the steroid can work on the underlying region to reduce inflammation. LS is an inflammatory auto immune condititon and the aim is tho reduce that inflamation. Steroids are the only agent so far that the medics have found that works - and the most effective - and potent - is Clobetasol - so do grit the teeth and return to the steroid ointment - dont use the cream it clogs and isnt as effective- The Cortisone 10 isnt as strong a steroid as the the Clobetasol.

    The other aim is to keep the urine off the skin - and other fluds / substances too - blood, faecal matter and vaginal secretions. Keep  everything as natural as pos - no bleach in the washing or cleaning in the laundry no  smellies / talc near the skin Ideally loose cotton pants - or go commando NO SCRATCHING EVER!!!!! Try rubbing another part of use believing you ARE soothing the undercarriage - it can work at time s - most time for me-

    i trim the pubic hair around the lost labia leavign hair on the mons pubis - mainly cos if removed it itches like mad when regrowing - gets caught up in clothing! I would not advise shaving  cos of nicking the fragile skin

    Sadly you have joined a club none of us wanted to be members of- and one has to be patient- there are no quick fixes - weeks rather than days i fear

    Try and identify what triggers YOUR flare ups - there are many reasons why t hey occur - according to threads on this site, diet of one sort or another  - for some coffe, for others -  and all of us have mentioned STRESS at one time or another - so stress management is a Good Idea.

    Some peoople have put various substances on the sore patches - i havent so wouldnt go down that route - but others claim success of varying degree. Good luck and Cheryl you are not alone - we all feel for you My very best wishes

    Sue

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    • Posted

      Sue thank you so much for your words, they're greatly appreciated. I have always had sensitive skin, since I can remember, having to use hypo-allergenic everything. A couple years ago I was diasnosed with Chronic Uticartia (hives) and take a allergy med everyday to keep the hives away. Now there's this....I just can't win! Lol! I don't mean to make light of it because it's awful, but I have to. I just soaked in the bath like you suggested and went back to steroid ointment, so far so good. I'm nervous to put anything else over that ointment because I've been known to break out into hives when I used two different items as a kid. I read somewhere that your thyroid can be a contributor to this and I have an appointment with my pcp tomorrow and hope to talk w/ him further about that. At my last appointment with him he said thyroid can also be a cause of the hives so I'm hoping he'll have some further insight. These past few days have just been so uncomfortable and at times, painful. I'll continue to read posts and definitely watch that video. Thank you so much!
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    • Posted

      excellent comprehensive  and helpful reply to a newcomer, Sue. well said .

      I've had mine about 12 years and checked it out myself, thanks.

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    • Posted

      Cheryl Hi,

      Sorry to hear of your LS dx. I have been dealing with it for 11 years and like you also have chronic uticaria. Mine happens when things touch my skin, slight pressure of the contact of anything will trigger a hive outbreak in that area.  I take benedryl at night which can also help the LS itching once its under control with the steroid. 

       

      Definately watch the Goldstein lecture, it has been so helpful for many of us.

      Dont give up. Initial treatment is usually 6-12 weeks daily, do as long as your dr told you. You do taper down to a life l ong maintenance. 

      I have recently switched from clobetasol cream to the clobetasol ointment and it has eased symptoms so much quicker.  The ointment is a luttle more potent and seems to rub into the skin more thorough. 

      I also have very sensitive skin so I use vasaline, aquaphor healing ointment and unrefined virgin cocunut oil for barrier and moisturizer. I have not had any issues with the three. I trade off and use vasaline more often but when I have a tear or raw area I use the aquaphor. I use the cocunut oil when things get dry and itchy and also for lube, but not wIith condoms.  

      Im sure there is much more advise and some have already touched base on a lot of it.

      Wish you luck.

      Tomorrow I go in for a biopsy and vulvoscopy. The new gyn thinks I may have a secondary condition on the vulva.  She also gave me estrogen cream to promote healing of the vulva skin.

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    • Posted

      oh dear sha....i'm concerned. Good Luck with that....will think of you.
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    • Posted

      Thanks Marey. Im a little nervous. The biopsy is partly because no doctor ever did one to confirm LS. She was concerned with the amount of atrophy also. Im thinking she is wanting to be sure I dont also have VIN
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    • Posted

      Good plan if you're comfortable with that ....and understandable. Very wise to get any re-assurance you feel you need. Also after 12 years perhaps you're wanting more clarity. I hope at some future time to be able to come back and to point women in another direction to increase options...but am not there yet!

      I am going to be thinking of you very intensely tomorrow and wishing you well. What time is it to be please? The staff will be lovely towards you ...that I know  ....and so for this reason it will be a positive experience...enjoy being fussed over a little and be yourself !!

      hey here's a little tip for discharging nerves. well you slightly open your mouth and relax your jaw ...do this when you're all cosy and tucked up in bed....then touch your back teeth together...kind of mime it in an exaggerated way to get you going and allow your teeth to chatter...whilst at the same time shaking your arms and doing the hello dolly with your hands and wiggle your toes and alternate your legs up and down....a kind of good allover shake down....it just helps to release something... a pent up energy...and generates a healthy bodily flow. Its an actors trick but also a therapeutic one to calm yourself and to release emotion.

      so glad you can talk about being nervous...so often we forget out emotions don't you find? It means we are truly alive to be able to feel. Well I shall be thinking of you tomo  dear sha   xxxxxxxxxxxxxxxxxxx 

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    • Posted

      Thanks marey,

      I go in at 10:30 US pacific time.

      The gyn is super nice and I knkw she will treat me well.

      Will have to try that relaxing technique you described, sounds interesting. my nerves get the best of me quite often with my anxiety getting a little worse over the years.

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    • Posted

      Welcome! Oh the time scale thing I'm forgetting. Think I might be in bed then....are you 7 hours behind...its around 6pm here in UK.

      Sorry to hear you have anxiety from time to time. Actually I'm forgetting this is more of an energising action than a relaxation practice....although in the long term ...practising these actions and staying in touch with your emotions does lead to relaxation...if that makes sense? So rather than practising this in bed its best when you're in a situation....eg as you approach the hospital...you can do that little workout...or in the loo once you're inside... so folk don't wonder why you're doing a jiggle in the street...tho they might conclude you were headed toward the right place if you did .....!! Sorry getting silly but hope I'm cheering you up !!   xx

      What can we suggest to help with anxiety? Did you know it can be one of the symptoms of a reaction to gluten....seems odd but avoiding it does seem to help many people .

      Anyway I'll have to think of you at bed time and will wish all well for you x

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    • Posted

      lol, definatley making me giggle.  I know  what you meant by getting the nervous feeling out by doing this action, therefore relaxing the mind a bit and putting a good energy through your body. I actually remember doing this as a kid.

       Your 6pm would be my 10 am here. 

      as far as anxiety and gluten Im not sure. I do know im eating less gluten now then I did before. I have always been a little high strung, ocd and such. My anxiety hit me in my 20s when I experienced a bad panic attack due to stress.  It took a long time to control the panic attacks.  I think its getting worse the past couple years due to more stress. I still am raising kids.  for some reason the anxiety is causing more feeling of closterfobia.

      Hopefully I can get it under control again with excersise and diet.

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    • Posted

      That is a really excellent plan!

      oh glad you had a giggle by the way and so glad you could connect with the suggestion. Yes precisely...aren't the things we did as kids just the best things to get back to....well you've given me a boost too, thank you!

      well i was wondering...might you be able to make a weekly arrangement to meet up with somewhere for coffee in a nice relaxing place? just to have something to go for and to look forward to? Its good you're aware of a potential problem but I think you're going to be able to get a handle on it xxxxxxxxx

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    • Posted

      Sue! I could just hug you! I have been diagnosed but just kinda left to handle it on my own. No directions on how to take care of myself to give me the best chance to heal.

      Your advice and directions on how to use the steroid cream is the first help I have gotten so far. I thank you! I will be taking your advice and hoping for relief.

      Thanks again!

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  • Posted

    Hi dont be scared. i know its hard not too. i was so sad when i first got LS. I cried all the time and thought i would never have sex with my husband again. But thats not the case. You are in a fare up now so it seems bad. keep using the clob cream until you feel better. when i had my last flare up i did clob morning  and night and used coconut oil all day long! 

    When not in aflare up i use vitimin b, e and zinc. its one of the convos on this group so you can read about it there.  the truth is LS sucks but its not the end all be all. You just need to find what works for you. Once u do its pretty easy to manage. hang in there

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    • Posted

      Thanks Lisa! I'm just feeling so discouraged right now. I've always had sensitive skin and this is just another thing now. I feel like I should live in a bubble. I just got out of a 3 year marriage where there was no intimacy, started dating someone about two months ago and now I'm nervous there will be no sex! Trust me, I know there are others who deal with things in life that are more difficult x 10 but this is new so it's frustrating. Thank you for your words of encouragment, I'll continue to hang in there and find what works for me!

       

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  • Posted

    hi cheryl

    well first of all welcome to the site...you're in the right place!

    We did have a member who had the problem you mention...an extreme sensitivity due to pubic hair ingrowing. I'll try to direct you to her thread...but will have to come back to you while I look for it!!  She's off doing research at the mo but will prob look back in at some point.

    What is cortisone 10 specifically good for that you've found?

    Your nerves are understandable but there are various ways you can go with this so I'll let you have a look round and will chat further.

    lots of love marey x

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    • Posted

      Thanks Marey! I'm so tempted to shave it again so can relieve that annoyance for now and let it grow back when I'm not in the middle of a flare up. I'll grit my teeth for now and hopefully just get through it. Cortizone 10 is great for the itch but another used said to go back to the steroid cream because it will work so I'm currently doing that. I just soaked for 15min in the tub and put the steroid ointment on and feel pretty good. I think the best part of all of this is talking to people who understand what I'm going through. My mom works in the medical field and has never heard of this. They said it occurs in those in the menopause phase, but I'm only 35 so none of my friends have it either. The support I've felt so far has been great though, thank you!
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    • Posted

      I'm really glad Cheryl! Welcome x

      Will try to find that other thread. Oh the itch scratch strategy is a good one. We had a laugh about trying to avoid the video camera whilst doing a little dance in the corner of our local stores !!!!

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