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New diagnosis

Posted , 7 users are following.

bennetta
bennetta

Hi, I've recently been diagnosed at 27 years old. I have four children and had a tubal ligation Oct this year. Is it possible the tubal brought this on? It took multiple doctors before I finally got a steriod cream. I've only had it a couple days, how long is it typcially before i'll see any relief? I'm in so much pain and the doctor really couldn't tell me much. 

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  • hanny32508
    hanny32508 bennetta

    Posted

    Hi Bennetta,

    Sorry to hear you have joined the ranks of those who struggle with Lichen Sclerosis.  However, you're asking your questions at a good place. This group has given me much support.  Wouldn't have made it without.  So I hope you will find  reading about other people's experiences helpfull and somehow comforting.  

    It is not known what exactly causes Lichen Sclerosis.  The conventional medical world has not all the knowledge to fight this disease indefinately either.  It is a 'keeping under control' thing.  Among the various discussions here, I hope you'll find plenty of very helpfull supports and suggestions that may help you to make all liveable.  

    It will require a certain amount of patience before you'll experience some form of improvement.  Some immediate suggestions that have helped me:  stay away from sugar, alcohol, caffeine, gluten, dairy, soya.  Try to follow an alkaline diet. Avoid stress.

    For soothing:  take a bath with one third of a cup of baking soda regularly; rinse the area after every bathroom visit with warm water and three pinches of baking soda in a spray bottle.  Cover after this with coconut oil.

    Do read the various discussions of the topics on LS. Try to learn as much as you can about this LS.  It may help you to feel more comfortable with it.  (though of course it is painful at times, however, there are long periods of some form of comfort once it's under control)

    Wishing you WELL. 

    • Holiday_girl
      Holiday_girl hanny32508

      Posted

      Hi Hanny you say you use cocoanut oil is this a runny thing like cooking oil which I thought it was only I saw an advert the other day can't remember where but it looked like the Hydromol that I use which is really good and gives me complete relief along with the Dermovate about once a week after suffering for 12 years thinking it was just old age cos my mum was always sore down below and using Sudacream for relief wish I knew then what I know now xx
    • Chrisy
      Chrisy Holiday_girl

      Posted

      Hi Holiday girl,  Coconut oil comes in both forms runny and solid.  I think most users on here use the solid variety. 

       

    • hanny32508
      hanny32508 Holiday_girl

      Posted

      Hydromol may help you sufficiently. However, the organic, indeed, cooking oil that looks a little starchy - coconut oil has an added benefit - it has an anti-bacterial element in it.  The very reason why I use coconut oil.  Furthermore, next to fighting against infection, the baking soda changes the pH balance.  By now I can honestly say that it helps to stop LS from going any further.  That combined with a mainly alkaline diet could possibly be a good answer to our problem.  My fusing is in retreat right now.  We'll have to see how far this keeps on going.  LS in reverse! I wish that to happen to all people here.  
    • hanny32508
      hanny32508

      Posted

      Forgot to add:  Try to stay away from intercourse.  It will aggrevate the area too much and will stand in the way of healing.    
    • hanny32508
      hanny32508 Chrisy

      Posted

      Depending on the use, Chrisy.  I use solid to cover the area.  I use liquid/runny to help with the dilation.  Forgot to mention that.  There is a moment when the solid seems to crystallize somehow.  Which is very unpleasant during the dilating process. 
    • bennetta
      bennetta hanny32508

      Posted

      I love coconut oil so I will try that. I've been using Vagisil which has a numbing agent and i've found thats been the only relief. i"m also taking an oral anti-itch med. The cor. steriod hurts so bad and gives me no immediate relief. I'm going to try an alkaline diet at least until I can get through this pain. 
    • Holiday_girl
      Holiday_girl hanny32508

      Posted

      Hi Hanny was reading your urine is strong well before I was diagnosed so was mine and a nurse friend told me to take vitamin b tablets as I may have an acid bladder and this certainly helped a lot. I hope you find some relief soon I had a bad flare up on holiday about 3 years ago but at the time didn't know what I had wrong with me, I was so sore and red looked like I had sat on an electric fire I was in so much pain . Went to a doctor which cost me approx £100 who said it was a water infection and gave me some tablets but didn't get much better, I used Vaseline at the time which eased it till I got back to England and saw my own doctor. Hope you are feeling a bit better now and have a sore free Christmas .
    • hanny32508
      hanny32508 Holiday_girl

      Posted

      I may not have written things down well enough. Nothing wrong with my urine.  Perhaps mis spelled -  I can urinate very well, which is the positive result of the dilating procedure I underwent in the hospital, meanwhile approx two months ago.  This emergency I landed me in the hospital after a severe flaire up that closed almost the entire bottom, except a small pin hole to pass urine.  

      Great rejoicing, since things have improved tremendously.  Good things came out of a not so good thing.  All very positive this far and I'll continue to hope it will stay this way.  A true luxury to be able to pee like a normal human being, I tell you. 

      I wish all on this website a sore free Christmas as well.  

    • Morrell1951
      Morrell1951 hanny32508

      Posted

      I'm so happy for you, Hanny. You're an inspiration! Have a great Christmas.
  • Morrell1951
    Morrell1951 bennetta

    Posted

    Hi Benetta,

    Sorry to hear you've got LS. The good news is that a recent review of research indicates that being diagnosed and treated within two years of onset means complete back-to-normal skin. Many of us went years (decades in my case) before diagnosis, so it's a lifelong problem for many of us.

    The ultrapotent steroid ointment (most of us use clobetasol propionate .05% or equivalent, 'clob' for short) usually prescribed can take months of graduallly reduced frequency of use before the symptoms are gone. But most of what we talk about in this forum is all the other stuff we can do, most of which makes a difference quickly. Hanny here has a particularly aggressive form of LS (there seem to be several) and also other autoimmune disorders, so she's very diligent with her diet. If you can just cut way back on sugar you may find it makes a huge difference fast. Sugar is the top proven inflammation-worsening food.

    The Koebner Effect is a skin phenomenon where trauma to the skin sets up a reaction in Lichen Sclerosis and psoriasis. I also suspect my tubal ligation and episiotomy didn't help, although I already had LS before them.

    With four kids at age 27 I imagine sex is a rare treat, but you should understand that while you're flared up, the friction and bodily fluids of sex will only make the symptoms worse.

    If you've only seen your GP, you might want to ask to see a gynaecologist, dermatologist, or ideally a vulva clinic.

    Anyway, I imagine you'll improve quickly soon. No soaps or other chemicals on the old undercarriage. Wear loose cotton pants. Use anything thick and oily, even Vaseline, to keep urine off your parts.

    1/3 cup of baking soda (bicarbonate) in bathwater is healing and soothing.

    Do come here and explore the stories and tips. It's the best site in the world!

    • bennetta
      bennetta Morrell1951

      Posted

      Hi! I couldn't imagine going two years like this. I'm in so much pain! I'm not sure if i've had any discoloration or other symptoms before, it's just come on so fast over the past month and so painful I knew I had to get anwsers. We are in the U.S. and despite being here, we are on an island and moving to an even smaller one. I'm a bit terrified about the limited access to proper professionals but im hoping I can get things under control before we go. I appriciate your response and am glad i'm not alone. 
    • Morrell1951
      Morrell1951 bennetta

      Posted

      Once you have the prescription you're OK as long as you're checked twice a year. We have a greater than normal chance of getting squamous cell cancer of the vulva, but it's slow-moving and there are warning signs, so as long as we're checked it's not going to get a chance to happen. You'll be fine on the island. It sounds like a good place to be nice and peaceful, which is the best thing for LS. I live in the woods and I know this is true.
    • bennetta
      bennetta Morrell1951

      Posted

      Do you have any idea roughly how long it'll take for the sores/cuts to heal? Should I see relief in a month? Week? Even just a tiny bit of relief. 
    • suedm
      suedm bennetta

      Posted

      In normal circumstances mucosal tissue can heal in 5 days or less - think of a split lip that isnt caused by a mouth ulcer or a cold sore - think bitten tongue. The tissue on the undercarriage isnt too dissimilar to oral tissue. That being said tissue with LS is thick and damaged and the blood supply may be altered to the area making healing take longer

      Remember having stitches during child birth? you would have had salt baths to help soothe the area. Keep body fluids off the area- yours AND you partners Do watch Dr Goldstein's lecture https://patient.info/forums/discuss/dr-goldstein-lecture-271556 it will take aout an hour so find time on your own with out children around - get your partner to watch it too - it will help him understand your pain. DO NOT RUB or SCRATCH  the area EVER If you are irritated scratch another part of your body thinking that you ARE helping your poor undercarriage- it CAN work. "mind over matter" stuff

      When i was diagnosed it was told it could have been caused by a sudden change in hormone levels and going through a very stressful period.

      Dilute your urine by drinking a lot of clear fluids, protect the area with a barrier ointment or cream after applying the steroid- which can and does sting at times - grit your teeth - or take a pain killer 20  or so minutes before applying it will help Gradually you will find the pain gets a little less until it has gone. Most consultants suggest using the clobetasol a pea sized daily - for up to six weeks then reduce to x 2 a week...for ever...

      Get a mirror and LOOK at the area know what your anatomy looks like and keep a note of any food stuffs that seem to make the undercarriage more uncomfortable. Get your partner/husband to read these threads too - being young you will need to help him and HIS hormonal needs sexually, but while you have the flare up  penetrative sex is a no no for the time being. HOwever this situation will not be for ever and you will be able to return to a normal sex life - IF he is considerate and gentle and you havent fused too much. You asked about tubal ligation several of us have had that procedure - but no definitive answer seems to be aapparent There was a thread with that heading it may still be there

      Good luck and try not to be too distressed

      Sue

       

    • Morrell1951
      Morrell1951 bennetta

      Posted

      Sue's right on all counts. It's so hard for us to estimate what could happen with you. Depends how aggressive your version of LS is and how much things like diet and stress have been factors – if more, then your changes should work quickly. When I cut most sugar out and quit coffee, the sore red area around my anus turned normal in a matter of days. I didn't try those things till I'd been waiting almost a year for clobetasol to work. I think you have a good chance of improving fast.
    • bennetta
      bennetta suedm

      Posted

      Thanks. I've been avoiding fluids trying not to have to go so much because it hurts but makes much more sense to dilute it since I can't avoid urination altogether. I've been taking Araratx and ibprohen pretty regularly because otherwise I find myself screaming trying to put on anything topical or go to the batheoom. 
    • Morrell1951
      Morrell1951 bennetta

      Posted

      Bennetta, I have psoriasis as well as LS. They seem to be related. A few years ago I had a bad psoriasis flare-up and a retired nurse friend suggested ibuprofen (Advil) because psoriasis is inflammation. I used it in increasing amounts as the skin kept getting worse. Then I looked it up and sure enough, a number of psoriasis suffers on the big UK forum said that ibuprophen causes psoriasis flares. I can't promise that's happening with your LS, but if I were you I'd stop it right away and see what happens. A better drug for itching is chlorpheniramine (generic Benadryl). There is not a thing online about oral anti-inflammatory drugs helping LS.
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