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LS fusing

Posted , 15 users are following.

sheila49099
sheila49099

I have suffered for 33 years with this disease.  I am 76 yrs old. LS is an autoimmune disease and a health person told me for a true autoimmuneO

problem is that you had to have 3.  I have arthritis, Ls and thyroid.  Jus over a year ago I had to have the thyroid removed (cancer) . That is okay now. But listen to this, The unbearable constant burning itch has all but disappeared.  There is till some very mild discomfort around the anus.  The fusing was so complete that I lost the clitorus first and than the labia minora and the labia majora was starting to disappear.  But with the regular use of coconut oil and spraying after bathroom use with water and baking soda I now have rather normal looking labia and normal colour.  i was white, gray, purple and bumps.  Ony the clitorus has not been uncovered but sensation is still there.   I am just very slightly  white at the entrance to the vagina both front and back.  I wish i had Known about these treatments years ago. 

3 likes, 63 replies

63 Replies

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  • hanny32508
    hanny32508 sheila49099

    Posted

    I'm so glad to hear that the baking soda and coconut oil regime has helped you too.  Life with LS is very doable this way isn't it.  Just keep at it.  
  • Chrisy
    Chrisy sheila49099

    Posted

    Hi,  I just re read all of this post and think I want to clear something up for myself.  I understood that the soaking in a bicarbonate of soda bath or similar treatment was only for just before treating with the clobetasol in order to make the skin supple so that the steroid can do it's job.  If you are only treating once or twice a week then that is the only time recommended for a long soak in bicarb treated bath.  I think that cleaning the area and keeping it prestine is probably sufficient twice a day and I use Epaderm to clean and treat between washes and to moisturise in order to not wet the area too frequently or use the bicarb too often. 

    If I have this wrong can someone inform me.  I must say that this seems to work for me.

    • hanny32508
      hanny32508 Chrisy

      Posted

      Originally I 'invented' the bi-carbonate rinses and baths to avoid infection.  This after I had a dilation procedure done in order to be able to urinate properly again, and this due to the every continuing fusing closing almost all done there.

      To my utter surprize the fusing let go as I continued the use of bi-carbonate/baking soda treatment.  By now I have almost no fusing left and all functions as 'new'.  And still I discover improvement as I keep doing my baking soda 'ritual' faithfully. 

      Next to that I believe my adjusted diet had an impact as well: no sugar, no alcohol, no gluten, limited dairy.  

      Hope this answers your question.

       

    • hanny32508
      hanny32508

      Posted

      And almost forgot - the use of coconut oil, for moisturizing originally, I believe has something to do with this turn around as well.

      Do realize though - this was helpful to me.  Some people have been helped with this as well, others needed again to find other solutions. 

    • Chrisy
      Chrisy hanny32508

      Posted

      Thanks for the info.  I have also found benefit like you.
    • Morrell1951
      Morrell1951 hanny32508

      Posted

      I splash with baking soda water every night before coconut oil or prescription, depending what day. I think it really calms thngs.
  • kathryn07219
    kathryn07219 sheila49099

    Posted

    Just been reading through this conversation and thought I would add a couple of things.  Firstly, at the time my lichen sclerosis started I was on a very low sugar diet.  I say "diet" but it wasn't to lose weight, just to improve my eating habits.  So I don't think sugar plays a part in LS.  It was triggered by a lengthy period of overworking and the associated stress.  Secondly, my gynaecologist has recommended I have the Fentons Procedure to open up my vagina as, like many of you, it has become small and the skin splits.  I cannot see how a surgical procedure can be good on skin that is affected by LS?  Am I being particularly stupid?  Have any of you guys had this procedure?
    • kathleen65757
      kathleen65757 kathryn07219

      Posted

      I know nothing about the procedure but I agree with you about the sugar. I don't have sugar unless I am being a bit naughty. I don't do any odd things with diet or try anything that has not been recommended by my specialists. They did recommend vagifem but I could not tolerate it. I tried several times.

      I do believe it is autoimmune and also that stress affects it because it is widely known stress has a huge impact on the body.

    • karen41728
      karen41728 kathryn07219

      Posted

      Hi Kathryn have you ever had a problem with smear test abnormal cells X
    • kathryn07219
      kathryn07219 karen41728

      Posted

      Never had an abnormal smear test.  However, I am now too tight to have a smear test without a lot of discomfort.
    • hanny32508
      hanny32508 kathryn07219

      Posted

      I have had a dilation procedure done.  I prefer that instead of cutting.  It has been very successful.  
    • Morrell1951
      Morrell1951 kathryn07219

      Posted

      Kathryn, I agree that sugar doesn't cause LS. But my experience and others here has been that now that we have LS, eating too much sugar can cause a flare-up. Not eating much sugar is not a cure, but it does reduce the number of bad flare-ups. Hard to separate it from stress, though.
    • kathleen65757
      kathleen65757 Morrell1951

      Posted

      No connection to sugar for me! When I had a shoulder reconstruction and it was hard to be vigilant with the cream it was difficult to keep on top of it. It is definitely auto immune for me. 
    • annewin
      annewin hanny32508

      Posted

      I've only just found this post, I know its quite old now.  MY LS fusing is getting worse and I wonder what is involved in a Dilation Procedure.

       Please could you let me know, Does it hurt? Does the fusing come back afterwards?  Thanks in advance of a reply.

    • hanny32508
      hanny32508 annewin

      Posted

      Annewin, this dilation procedure was done in the hospital under full narcose by my gyno.  The pain afterwards is minimal, because there is no cutting that needs to heal.  Though it is important to keep things clean down there and that's when I started to rinse with baking soda water and applications of coconut oil after that.  It has been a turn around for me.  The whole area started to look better over time, more fusing ever so gradually disappeared.  

      My fusing was so bad that I could no longer pass urine properly.  It took me eventually half an hour to empty my bladder, drip by drip.  Something needed to happen, that was obvious to my doctors.  

    • hanny32508
      hanny32508

      Posted

      On advise of my gyno I started to do dilating every day after that and gradually the opening became bigger.  All in all a true life changer.
    • annewin
      annewin hanny32508

      Posted

      Thanks for your prompt reply.  I will be seeing my Gyno in a few months, but I'm interested to hear of others experiences so that I can see her with an informed mind.  Although you say dilation means there is no cutting involved does it not cause splitting or tearing?  I find if I rub the fused skin too hard with just my fingers, it hurts.  
    • hanny32508
      hanny32508 annewin

      Posted

      It will hurt and therefore this procedure will be done under full narcose. The result is that you can pass urine better.  At first it will need all your attention and good care afterwards.  Needs to be kept clean. (hence my rinsing with baking soda)(and coconut oil)   It will be sensitive at first.  But be assured, when well done by a good gyno, dilation is your better option.  Though it will require your own effort to keep it open.   

      With this procedure and the constant dilation my whole area down there returned to almost normal again.  (also of influence was the use of baking soda rinses and bath and application of coocnut oil) (changed diet - no sugar, no alcohol, no gluten , limited dairy for me) (greater awareness to healthy eating habits)  Also of influence was the use of hormone replacements.  (not premarin!)  

      It's that 'total package' that makes the difference.  

      I don't know how far your fusing is - mine was completely fused over with just a pinhole left to pass urine.  The dilation was approached from the vagina side.  Just a small opening was created.  The dilation I started afterwards (on advise of my gyno) was first done with a crayon wrapped in a condom.  I repeated that six times a day at first.  Then I used a wax candle wrapped in a condom.  The next step was using the smallest size of a dilation set I had ordered from Amazon.  The 'art form' was to keep it open.  LS wants to grow it closed again.  The baking soda rinses made a good difference and gradually cleaned up the whole area. More and more fusions seemed to melt away, to my utter amazement.  

      Today we're approximately three quarters of a year further and I have to tell you that I faught hard for this result - gentle sex with my husband again, normal bathroom visits and more general comfort.  

    • annewin
      annewin hanny32508

      Posted

      Thanks again for your time giving me this information.  I have just under 1/2 inch left to go, so I am not in dire straits at the moment, but it is getting progressively worse, so I need to find out what I'm going to have to do about it in the future.  Your information has been very helpful.
    • hanny32508
      hanny32508 annewin

      Posted

      You're very welcome Annewin. 

      I hope your start making an appointment with your gyno soon.  Don't wait too long.  An unexpected flare up did me in all at once.  Too scary to let it go that far, but at the time I didn't know any better.  

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