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Diagnostic confusion

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margaret289
margaret289

Hi All, after believing for the last 5 years that I have LS, I now find out that I have not, but I have a condition which behaves in axactly the same way and is treated in the same way also and may also require biopsying for pre cncerous conditions periodically.  However, there is no label attached to it.  I am feeling really confused now as my GP has referred to it as LS in that time.  

Frankly, this is nuts!  I am therapeutically back to square one, with the consultant I saw this morning asking if I had been tested for thrush and had I changed my washing powder.  She also advised loose fitting trousers etcetera etbloody cetera (sorry feeling extremely frustrated, because I know al this since living with it for 7 years).

Has anyone else had this experience?  It looks like LS can only be accurately confirmed by biopsy, but I was not told of the absence os LS five years ago when first tested and now am told that the treatment regime would have been exactly the same in any case.

0 likes, 22 replies

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  • annabel01635
    annabel01635 margaret289

    Posted

    Yes, it is possible.  The original gyne said I had some small abrasions/cuts where the skin was delicate/tearing. But I don't remember ever feeling bad itching or being at all affected by tight clothing/perfumed bath products etc.  The only bad itching I had was definitely thrush and was cleared up immediately by canestan.  So I'm still wondering if lack of oestrogen can cause shrinking and fusing of the clitoris. What do you think?
    • margaret289
      margaret289 annabel01635

      Posted

      My doctor did say that there are natural changes in the architecture which arrive with age and all its attendants, probably including lack of estrogen.  Our problem is that few of us are familiar with the look of the genitalia of women our own age.
  • Morrell1951
    Morrell1951 margaret289

    Posted

    I don't think it's really possible to confuse LS fusion and atrophy (the kind I have, anyway) with ordinary post menopausal atropic vaginitis.

    I found a Powerpoint slide in a Medscape article that lists the symptoms:

    Atrophy

    2 years since natural menopause

    • No estrogen therapy

    • Loss of labial and vulvar fullness

    • Pallor of urethral and vaginal epithelium

    • Miniman vaginal moisture

    • Loss of urethral metal turgor

    It sounds like everything stays where it was, but it's kind of deflated and dry. My vagina is very moist. This is definitely a very different thing.

    There seems to be a forum here at Patient UK for atrophic vaginitis.

    • annabel01635
      annabel01635 Morrell1951

      Posted

      Thank you so much for that. Well, what I have is defnitely more than just loss of labial and vulvar fullness so perhaps it is LS after all.  I have been using Dermovate on and off for two years now so perhaps it is keeping other nasty symptoms like soreness and itching at bay. This is a great site and am so glad I found it.
    • Morrell1951
      Morrell1951 annabel01635

      Posted

      I'm convinced Dermovate/Clobetasol does keep most symptoms at bay, Annabel. I have a tear about half the time (but not as deep as they used to be, no bleeding), and my perineum is white more than that and the skin is very red around the back door (worse if I eat chocolate), and no boils; generally I'm not uncomfortable. I'm so stingy with the drugs – I've used less than a 50 g. tube in nearly a year.

      My mother has had rheumatoid arthritis for 45 years and she became her doctor's model patient for managing her disease with the least possible drugs. She's 86, ambulatory and mostly continent, one joint replaced, heart under control, brain 110%. I believe IBS may have been her root problem – she had an 'interesting' childhood. She has never been a candidate for trying any avant garde diets, very meat & potatoes. The medical system has taken excellent care of her.

  • jayne80725
    jayne80725 margaret289

    Posted

    i was thought to have ls by my gp and was referred to gynae. i had a biopsy and the results came back no cancer or ls but lichen simplex. all same symptoms of ls but she wasn't very forthcoming about difference. i still have a very sore patch around my vaginal opening, she said not to use dermovate but sudocrem. i am 58 and she said when you have the menopause your vagina narrows. presume i am going through menopause...mirena coil fitted so no periods for years.... as i have a dry vagina and not had sex for two years as it hurts too much the deeper he goes. she said my bits being as they are......they've almost disappeared.....that i will never get them back.
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