HELP! 24 year old Lichen Sclerosus severe symptoms!

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Hello ALL. I need some major help/ support here rolleyes. I have been diagnosed with LS for about 6 months now and it started ok until I used the steroid cream and then it began to flare up and get worse (or it may have been the LS just progressing?) Never really had itching excpet for the bum a bit. I then started to use emuaid and emu oil and got some reuslts/ used manuka honey a bit, but the flare up were HORRIBLE. I had peeling of skin during my period and lesions on my right labia majora everywhere. I then got an Anal Fissure to accompany everything which is probably the most painful thing (passed out in the bathroom a couple times from pain). Now the left labia has begun to thicken and swell with lesions as well and it is almost impossible to pee cause the urine touches the sores. I am concerned this is turning into pre cancer symptoms with the sweilling and thickenning/ roughness? HELP if anyone can please I am in misery and my BF is so concerned for me sad 

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  • Posted

    Hi, all I can tell you is what I have been doing lately.  I use pure Emu oil during the day, then I use the dermavate at night.  I also use wipes when I use the bathroom.  Keeping everything clean is important.  I wash with sensitive skin cleaner. I  still have mild flare ups, but this method seems to work most the time,  Hope you find a treament regimen that helps.
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  • Posted

    Hello Dsauce, you sound in an awful state you poor girl!

    Perhaps if you make an appointment to return to your gynae asap for their advice - Contact either the clinic or the gynae's secretary for an unscheduled appointment and explain the situation. In the mean time I would stop the over the counter remedies for the time being - you may be having a reaction to one of the ingredients in the product. The steroid may be a tad strong for you  and this is why you should return to the medic who prescribed it for you. - But as you say it could be a flare up. Very bland aqueous ointment to wash with - the moisturiser you were recommended  - use it copiously - I dab, never rub  on to the undercarriage. Have a high fibre diet - with stool softeners if necessary so that you dont have to strain.(But dont use any medication that may give you loose stools as faecal matter is excoriating) (burns the skin) Drink A LOT of water - to keep the urine from being concentrated, very dilute urine should be less painful than highly concentrated urine. Blood is highly painful when left on the mucosa( the skin on the vulva) for any length of time so gently wash it off - you may be able to go on to a pill that reduces the blood flow - again check it out with the gynae. It isnt likely to be  turning to pre cancer at this stage - you are in an acute episode - and newly affected, normally it is the chronic long term sufferers' condition that may turn a pre malignant, so stop worrying on that score.  And STRESS seems to be THE biggest factor - look at your life style and can you reduce any stress that you are experiencing? I am assuming you are in the UK - i am not sure about the health care system in other areas of the world but I think the principle  would be similar. Again heed the advice given by many on this site - loose clothes - or go commando - no trousers or tights or pants in bed and i would be thinking of taking an analgesic if the pain is THAT bad. Gentle spray from shower to wash with may be a good option if you have access to a hand held shower head

    Good luck take heart  and best wishes Sue

     

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  • Posted

    Dsauce - what Suedm has written is excellent advice! all i can add to that is concerning the urine stinging the sore area, I apply vaseline gently over the sore part when it is dry and without this it would be excruciating as you have found. I do pee quite often as I take diuretics but this covering lasts well  through the day.

     

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  • Posted

    Thank you guys so much for your help and support more than anything. I got an immediate appointment with a different gyno tomorrow as my gyno is booked for 2 weeks and cant fit me in sad I will ask for a lower steroid maybe and also some estorgen hormone maybe? I will try to use vaseline so the urine doesnt pass over the sores. Hoping to get an opinion on the swelling tomorrow for non cancerous. 

    Do you reccomend coconut oil in conjuction with emu oil/ vaseline? And where can I get CMO cream that is effective? and Celadrin tablets? thanks I live in Australia I just found this amazing patient discussion form and signed up smile

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  • Posted

    Hi Dsauce. I think the coconut, emu oil etc are more for moisturising and softening, and the vaseline and other barrier creams are more for protection. I use emu oil when it is not so sore and just use the vaseline when it hurts.

    Hope tomorrow goes well. x

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  • Posted

    yes good luck d....so sorry to hear of the severity. sudacrem is another soothing and protective possibility for the initial rawness.

    once you've got the pain under control. ...try a few days  of a restricted diet...see if you can leave out grains. it may surprise you!

    will you let us know how you get on?

    love marey x

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  • Posted

    Quite frankly if i was in attendance at emergency admissions I would seriously consider offering you a catheterisation...until the condition settles.

    Please do not risk passing out again. 

    You would maybe have some awkwardness from the tube but you can be fully mobile with a bag strapped to the top of your leg in extremis...this collects the urine which you empty into a jug before tipping down the loo.

    Only you will know how far this tearing has gone but if it seems viable to you as an alternative to retention of urine then ask for the proceedure . It is given in emergency situations especially to relieve retention.

    Thinking of you

    love marey x

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    • Posted

      Thank you so mcuh for thinking of me. The doctor couldnt do a biopsy today because I was too enflamed everywehre rolleyes have to wait another 2 weeks to get one, but he did say it didnt't feel/look cancerous at all which has eased my worrying a bit. He is treating me with a fatty ointment at night and Emla cream/ emu/ vaseline in the day to hopefully calm down the mass swelling and "angry skin" I also got tested for all autoimmune diseases today with heaps of blood samples hopefully something will begin to shine some light! 
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    • Posted

      I am so glad for you! Taking control always helps with a few answers to your enquiries. Just remember that you are and need to be in control...you can accept or reject proposed interventions. For example I invite you to consider the benefit to you of a biopsy? Glad you don't need a catheterisation so you are obviously still in one piece and functional...that's the first blessing to consider!!

      What is obvious is that you have vulval inflammation. So looking for the root cause of that and the remedies you might agree is paramount? You are not obliged to have a biopsy and you may find it helpful to consider whether or not there is any benefit to this invasive proceedure?

      An experienced practioner will be able to tell you on visual examination and/or you maybe lucky and your body's reaction has been so acute that you'll be able to get on top of things before the condition progresses and then becomes indentifiable...

      A biopsy leaves you with a scar  that in itself becomes a further source of inflammation. Surgeons do I am afraid love to get their hands on human flesh!! I have worked with some brilliant surgeons but all they can tell you is yes you have the inflammatory  condition known as LS or no you appear not to. That would be because either the condition has not fully manifested...but is on the way so you have the precursors in any event OR you have something else which is pretty similiar and still amounts to inflammation.

      If you were to fast forward to post biopsy. Here s what you would be told. "You have Lichen Sclerosus there is no cure!"

      Is that in anyway helpful?

      Currently you are (acutely) aware that you've got inflammation. Ok so lets analyse that. What are the root causes (and they are often multiple given our current enviroment) and how would you like to deal with it? One thing is for sure this is a personal 'project'.

       

      Here are a few causative factors that you may have unwittingly encountered. Exposure to toxins...this is universal now and as a society we need to get onto it. Something you've been eating  that has accumulated to a level of toxicity ...something you've been bathing in or drinking...our water is heavily polluted with chlorine and fluoride all of which starting from now today you may wish to to decide to try to avoid. 

      I'm just starting out here with an explanation that I think you will have got the gyst of....!! Rather than overwhelm you I'll leave you to get back with further questions and your thoughts for a way forward for yourself. It seems the meds are responding to pressure groups and sharing our collective knowledge is of great help to the medical profession with whom we wish to work obviously. However we are at the centre of all of this ...and can influence the direction of energies.

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    • Posted

      Hey Marey, thanks again. I have already had a biopsy done 5 months ago that confirmed LS. This new biopsy in 2/3 weeks time would be to rule out cancer, although the doctor said it did not look cancerous to him. So I now must turn to the Fatty Ointment at night and Emla for 2 weeks so the inflamation goes down. Have just ordered Celedrin tablets and CMO cream in hopes to keep fighting inflation and will wait for autoimmune results for further treatment! 
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    • Posted

      oh ok thanks D....well i see you understand the biopsy process....for some of course this is helpful and the proceedure is available as a diagnostic tool. You may well enjoy hospital proceedures and I think its great that we all get the attention we need and deserve. You are in charge however of your own body....and I want you to feel empowered and assured by this knowledge so that you are not going through unnecessary proceedures that are of no real advantage to you.

      Does this give you an inkling of your own power and choice? 

      It sounds as though you are in good hands and have a conservative practioner who is working with you. You might wish to consider that he would have experience of indentifying ca and his assurance that you don't have it may suffice and obviate any 'need' (from a psychological perspective) to have a further biopsy. As part of your reflections and considerations you might wish to pause and ask whether there is a benefit to further puncturing the skin in this delicate area. The vulva is very easy to view by self exam using a hand mirror and actually, should you so wish, you could keep an eye on things that way as well. When you are examined take along your own hand mirror...my GP offered me hers when I went saw her (!) and she was able to point out the white patches that need keeping an eye on!

      I entirely agree with sueDM that there may be a lifestyle element to this..also it might be wise to minimise any new ointments or applications to the area. Have a think about what you've been doing/eating are you staying up late and burning the candle at both ends for example? Report back!!!!!!!!!!! Tee Hee only if you'd like to!!!

      love mareyxxxxxxxxxxx just an opportunity for self reflection not really an order!!

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  • Posted

    The staff would apply an anaesthetic cream to the area whilst passing the catheter. 
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  • Posted

    Hi,  Try to protect yourself before peeing with vaseline or a thick greasy moisturiser like Epaderm or Hydramol which will stay on for some time.  I reapply it after every pee so that the next time if I am in a hurry I will have some protection.  No stinging for me at all.  Try to apply again before peeing if you feel you are not protected.  I also agree with suedm that you are unlikely to have cancer which is extremely rare so go to your Gp and get a check up then you will stop stressing which is probably making things worse.  Good luck x
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