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Atrophy with lichen sclerosis

Posted , 10 users are following.

kathleen65757
kathleen65757

Ladies who have this condition with concerns about being able to wee in the future please comment and discuss your concerns and even if this has happened how did you manage? This is my main concern!

0 likes, 13 replies

13 Replies

  • hanny32508
    hanny32508 kathleen65757

    Posted

    Hi Kathleen,

    I was barely able to wee by October last year.  After a dilation procedure at the hospital I had a small opening.  It was at the same time a turn around point for me.  Fusing had totally 'sewed' me up at that time.  Today I'm as good as fusion free.

    Saying that - it is most likely possible to prevent deformation of our bottom if we treat it the right way.  Baking soda rinses and baths plus coconut oil and emu oil were my big helpers.  Only very small amounts of Glob are still in my routine, but less and less so.  Finding out what foods were triggers for LS was another turning point.  

     

    • kathleen65757
      kathleen65757 hanny32508

      Posted

      Thank you Hanny for your response. I attend the clinic at Mercy Hospital in Melbourne. What was the dilation procedure like? Did they cut you? I use Advantan fatty ointment every day especially in the area that threatens my urethra. I had not been getting the right spot apparently. I also have it around the anus but it is different...feels rough and never seems to get smooth. I know some people think there is a connection with food but I am not a believer in that because of the multitude of people who have food allergies but no sign of LS! My specialists have never suggested or supported that. Did yours follow that up or did you trial foods to see if it helped? Anyway, I appreciate your response. Thank you.
    • hanny32508
      hanny32508 kathleen65757

      Posted

      With the dilation procedure there is no cutting, but a stretching of the skin.  It is known that cutting is not to our advantage.  The opening was big enough so I was able to wee again.  In order to prevent infection, that I was so worried about, I started to rinse with baking soda water.  To keep all open I had to start dilating.  At the time I was very afraid all would close again, but it didn't.  Instead more and more fusing disappeared. Imagine my disbelieve at first.

      Meanwhile I have also discovered that eating cheese will trigger my LS.  Earlier on I realized that milk made me feel nausiated.  So now it's unsweetened coconut milk and goat cheese, if any.

      There is no clear answer from the medical world I am dealing with, but they are interested in as to why I was healing the way I did.  And they encourage me to keep doing what I'm doing - following as much as possible an alkaline diet. The docters I am working with understood that baking soda brings thoughts in this alkaline versus accidity direction.  

      I'm still 'shedding' fusions, even where I didn't even know I had them.  I can't even believe that I came through this LS ordeal the way I did.    

       

  • wendy14679
    wendy14679 kathleen65757

    Posted

    Hi Kathleen,

    I am one of those people who are quite convinced that certain foods trigger LS.   I  had a birthday celebration yesterday and drank one glass of wine (and a portion of trifle, positively decadant) and LS was almost immediate.  For me, no wine, nothing that contains sugar, bread, potatoes, tomatoes.  Well frankly I wouldn't know where to stop.   If I were disciplined I would live on vegetables only, but that would be a dream that is not going to come true!  Good luck, Kathleen.

    • kathleen65757
      kathleen65757 wendy14679

      Posted

      I do not believe the diet connection because countless people have food allergies and Intolerances and very very few have LS. 

      If others try that route and think there is a connection and believe it helps them then I guess it is like believing in God you either do or you don't. 

      Maybe people have LS and dietary issues and they do not connect? Who knows for sure? That could explain it why more have the diet problems but no LS! I have run it past my specialists and they say no.

    • margaret289
      margaret289 kathleen65757

      Posted

      Hi, I have a suspicion that we do not have food allergies as such, but that certain foods actually produce very acidic pee and/or poo.  If this is constantly on the skin (I'm sure we're all very clean, but the pH problem will still be there) then the skin will suffer.
  • suzanne21762
    suzanne21762 kathleen65757

    Posted

    I have been referred back to specialist, appointment later this month. I was diagnosed with LS about three years ago (can't remember exactly, seems like forever though). Late last year I popped to my doctors for a routine blood pressure check and asked her to check the LS as I had not had any checks for over two years. She said it looked like the LS was trying to close my 'wee' hole and felt a referral was required. Not quick on the NHS but at least I have appointment. I am really worried, but will wait and see what hospital say.  This whole illness is scary though, I have tried inspecting myself but as this area is not something I have looked a regularly over my life I am never sure what I should look like?! I do take Bicarbinate of Soda baths, have watched the Dr G webinar, use Dermovate as suggested by Dr G, and use Emu oil. So am doing what I can. I can still have sex but have to be careful as the skins can get sore quickly.  One thing, since the original diagnosis I have not had any itching, which is most likely the reason the LS took hold again without me realising. I now check myself everyday, still not sure what I should look like but at least I will hopefully notice if anything drastic is happening. I try not to worry and watch what I eat. Not sure if this helps you or makes things worse? Wish you and everyone else with this hateful illness all the very best.
    • kathleen65757
      kathleen65757 suzanne21762

      Posted

      Ah Suzanne sorry this is happening to you. It is relentless and if you do not get the itching it is easy to miss its stealthy progress. I do get the itch but at the moment I have been told to put the advantan fatty ointment on every day. It is okay to miss here and there but not too often. I am pretty consistent because of the concern with the wee. I am in Australia and no advice to use the emu oil which is readily available. 
    • lizziewizzie
      lizziewizzie kathleen65757

      Posted

      is this fatty acid something which 'plumps up' the skin? Glad it is helpful to you. Please could you tell me if there's any steroid in it?
  • christine_fay
    christine_fay kathleen65757

    Posted

    I had this condition (the first of a number of auto immune conditions) for 8 years before any doctor would listen to me or diagnose this. I was in suicidal agony and misery...my 'parts' were dissapearing as ifI had leprosy... peeing was a nightmare!.

    So much damage occured before a specialist confirm LS atrophica and Lichen Planus together.I was treated with Clob and had the first pain free night in 8 years... it was wonderful. However the damage done was appalling. The whole of the inside of my bladder is scarred and the urethra has practically dropped off. I cannot control my bladder at all. I have Botox treatment once a year (need twice but NHS only lets you have once) I have to use catheters to control the leaks when the botox wears off. I have managed this for 5 years now but its not fun...have to take antibiotics all the time because of the structure of my bits and the catheters.I have a good life though and refuse to let it get me down. Too much fear of peeing pants as you get older. Its not that bad! babies do it and no one minds...These days it is easy to manage with the right products.(NHS do NOT give you the right products by any means) Unfortunately they are very expensive...I have to send to China to order decent comfortable and long lasting PVC pants.. why can they not be available here?

    • kathleen65757
      kathleen65757 christine_fay

      Posted

      Where are you Christine? I believe it is auto immune too. I have Crohns, arthritis and gum issues. Not many people mention Dermeze which I find very helpful in between using Advantan fatty ointment. Sorry it is such a severe case for you Christine and that it took eight years to diagnose is awful! Some online companies in Australia have good products like 'Aids for Living' here in Australia. Glad you can keep your spirits up in light of such a burden!
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