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living with the effects of Lichen Sclerosus

Posted , 12 users are following.

shazmill
shazmill

I have been living with this condition for about 3 years. I was diagnosed after  a couple of white spots  appeared  around vulva area.  I had a biopsy which cofirmed  LS.

At first it was just itchy and uncomfortable. As time went on the whole area around and inside are now affected. This has completly taken over my life. I am unable to participate in any sexual activities as the pain is too great and the area starts bleeding.

I have tried everything from steroid creams, tape containing a pain killing agent to a numbing cream. They helped at first but then became less useful.

One thing that has helped is using aqueous cream to wash the area as soap or shower gels cause irritation. My consultant has also said about wearing cotton knickers as, it cause less irritation.

To date I am having six injections every three months into the affected areas. It helps but only last for six week max. I am given gas and air to help with the pain while having the proceedure.

I also have RA and Fibro

1 like, 24 replies

24 Replies

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  • suzanne00
    suzanne00 shazmill

    Posted

    So sorry to hear about how difficult this has been. Wondering if you could say what the injections are that you get every three months into the affected areas--I'm not familiar with this procedure.  --Suzanne
  • shazmill
    shazmill

    Posted

    i will find one of the consultant letters and then post what it is. Happy New Year
  • hanny32508
    hanny32508 shazmill

    Posted

    I think to understand that you wish people's thoughts on what you have been trying in order to manage your LS.  I'm wondering what kind of injections your are given.  Would you be able to tell?  

    The main thing for me to combat LS is the use of Globetasol ointment.  (Maintenance level is twice a week.)  Next to that I'm using a small spray bottle (the kind used by women who just delivered a baby works very well)  filled with warm water and three pinches of baking soda.  Regular baths in baking soda baths (1/3 of a cup)  have been very soothing as well.  

    Then there is the diet:  NO sugar, alcohol and caffeine.  I follow an alkaline diet - no gluten, no dairy.  Small portions of meat.

    Perhaps the above is of some help to you as well.  

    Forgot to mention: it is best to abstain from any sexual activity.  At least till things start to heal and in general look better.    

    • shazmill
      shazmill hanny32508

      Posted

      hi hanny32508. You make some really good points. thank for the info. Sexual activity i had to give up so dont bother now. I will look up the name of injections for you
    • hanny32508
      hanny32508 shazmill

      Posted

      Forgot to mention the use of coconut oil after rinsing to keep things comfortable down there.  Have used emu oil at times.  
  • deb09833
    deb09833 shazmill

    Posted

    Hi - sorry to hear that you are going through this. You have a lot on your plate and unfortunately stress can be a major contributor to having a flare up. I've not heard of having injections for LS. If it is not working would it be an option to try something less stressful? A lot of us use Clobetosol, or similar alternating with estrogen to keep everything supple. Salt or bi carb baths/spritzing, cutting out certain foods works for some and drinking lots of water. If you need any more info yell out we are all here to help each other. Hope 2015 finds some relief for you x
  • suedm
    suedm shazmill

    Posted

    You have had a tough time - Where in the world are you- as the others have said the tape treatment has not been mentioned before - and I imagine the injections are steroids? Do you see a gynae or dermatologist- Gp of vulval specialist?

    As Deb said stressful situations and anxiety are THE biggest enemy of "LS-ers" So do try and have fun and it is said that just by smiling a lot the body increases the output of endorphins- the bodies defence against stress

    Take care and Good Luck

     

    • shazmill
      shazmill suedm

      Posted

      Hi there.  I live in Bristol.  I see a gynea and dermatologist at Southmead hospital.  He is really great and very understanding. Thanks for all your help

  • suedm
    suedm shazmill

    Posted

    That shouldhave said OR vuval specialist
  • athena93317
    athena93317 shazmill

    Posted

    Have you tried changing your diet and vitamins and gave you had your hormone levels checked many woman have said they have seen a real difference doing all that I don't have a hormonal imbalance I have started taking vitamins and no longer eat gluten the effects are to soon to tell but I can feel a real difference in not eating gluten I'm no longer bloated my stomach doesn't hurt all the time and I feel like I have more energy maybe I had an intolerance without knowing hopefully you find something that helps
  • rosalind84529
    rosalind84529 shazmill

    Posted

    Hi Shazmil. sorry you are having such a rough time. moisturisers seem to be a way forward. my gp prescribed Epiderm cream which can be used as a moisturiser or a wash cream.it does sooth the soreness and  itching . i have seen an ad on the intranet for a herbal remedy for LS claimed as a cure. it also contains emu oil. its expensive but im willing to trial it if no one else has and report back 
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