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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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  • Morrell1951
    Morrell1951 shazmill

    Posted

    RA and fibro on top of LS sounds tough. You mention that the LS is also inside. Are you sure you don't also have Lichen Planus? That goes inside the vagina and is very painful. If you haven't experienced improvement in three years with proper use of the right steroid ointment – that sounds severe.

    I think the best thing we can do when overwhelmed is explore stress management techniques. Not sitting-on-a-cushion meditation, but mindful awareness. I was an angry drama queen when I discovered these methods. The practices really settled me down and improved my stress-realted conditions.

    • shazmill
      shazmill Morrell1951

      Posted

      I will talk to my consultant and ask if it may also be planus. One of these conditions is depressing never mind having all three. I feel like iam constantly battling and losing. Thanks for your assistance

      shaz

    • suzanne00
      suzanne00 shazmill

      Posted

      Hi Shaz--I know what you mean by constantly battling and losing. I have a number of autoimmune problems, including LS, too. Have you checked out the autoimmune discussion section here on the forum? I spend most of my spare time researching what's happening in the field of autoimmune disorders. I am determined to get better and not keep developing more and more disorders, as I have seemed to. We seem to be the canaries in the coal mine with overactive and misdirected immune systems, likely due to a disrupted gut bacterial balance--one that maybe didn't get the correct information and wiring early in life. One thing that seems to help me a lot (though not cure, so far) is eating whole, unprocessed foods that is free of  grain, soy, and dairy, and sugar. Some people with arthritis are improved with a trial of removing nightshade veggies also (potatoes, bell peppers, etc.). If you haven't already, try googling autoimmune diets and you may find some good info. --Suzanne
    • shazmill
      shazmill suzanne00

      Posted

      Hi suzanne00. You so very good points here, I will check them out. I also suffer from b12 deficiency. 

      Thanks.  Its goid to able to talk to people in the boat.

    • hanny32508
      hanny32508 suzanne00

      Posted

      This far the alkaline diet has worked for me.  (no gluten, no dairy, no sugar, no alcohol, no caffeine)  There is definately something in avoiding certain foods.
    • deb09833
      deb09833 hanny32508

      Posted

      Just wondering Hanny if you still get flare ups since doing alkaline diet?
    • hanny32508
      hanny32508 deb09833

      Posted

      Deb, a few weeks ago I had the flue.  Did have fever and such, resulting in weakness all over.  Resulting in a flare up.  However, because I recognized it fast enough it was soon under control again.  But I had to use globetasol a few days in a row to repress it.

      Main thing with the alkaline diet and bicarb combo is that fusing stopped and gradually diminished.  At present I'm as good as free from any fusing.  I count my lucky stars.  Though it takes constant care and attention. LS never goes away.  You always have to remain alert.   

       

  • lyn4668
    lyn4668 shazmill

    Posted

    I, too, have been wondering about the differentiation between planus and sclerosus.  When there is oral involvement, especially erosive oral lichen planus would not it follow that the vulvar area would be planus also?  Morrell, you mention scalp involvement.  Could that be planus?  Is it all treated the same?   Erosive planus can be very aggressive I understand, and oral very longstanding.  Does anyone have any clarification?  Does it even matter if steroids or comfort measures are offered for both.  Sorry, lots of questions, i know.
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