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Possible misdiagnosis?

Posted , 7 users are following.

Jeanie44
Jeanie44

I thought I'd share my experiences with LS really to find out if this might help or ring bells for anyone else using this forum.

I started experiencing terrible itching - initially mostly in the genital area but then it spread all over my body. I saw a skin specialist and was tested for alergies and I saw a gynaecologist (eventually). The gynae told me he thought I looked like I had LS, describing what he could see as 'loss of architecture' - without ever explaining really what he meant by this.  He asked if I would permit him to take two biopsies (straight away) to check for LS. I agreed and the biopsies came back inconclusive but he told me I probably had LS and prescribed 'demovate' to help the itching. 

It helped a little but it also burned really badly and i think now that it may have made my condition (whatever it is!) worse. I was also having trouble keeping a yeast infection at bay and kept having recurrant problems which didn't help with either the discomfort or pain.  Eventually I was prescribed a daily antihistamine to help with general itching (all over) and this meant that I stopped itching at night. Things started to calm down a little but I was still assuming I had LS (and I might!) because so many of my symptoms matched what has been described by many on this site - tearing, fusing, itching, pain, etc. My sex drive was non-existant and I struggled emotionally for a long time. I tried the borax suggestion (afraid it hurt like hell and then scared me a bit) and bicarb (which was soothing but I think make the yeast infection worse). 

Then I went back to my original doctor (who had been on sabatical) and she checked my notes, and carried out an internal examination and started asking questions and listening. When I explained that the gynae had told me I had 'loss of architecture' she was very concerned and told me no, I didn't, or at least not in any sense which would warrant an LS diagnosis. She also presribed me a treatment for thrush (which worked at last) and suggested that perhaps I didn't have LS  but that the treatments I had been given were making the situation worse. My thrush went and the overall health of this part of my body seems to have stabalised for now. I still don't feel 100% but things are definitely better and easier to manage.  I'm aware that this might just be a temporary respite but I wanted to pass on that it's worth checking some of the other possible causes of the itching first - especially before using something which might only make the symptoms worse. 

I also think that in the early days when the itching was unbelievably bad that I might have caused the scarring or damage myself, just by scratching delicate skin. The daily antihistamines I am now on (Fexodenadine) have been a life saver for me. 

Would be interested if this chimes with anyone else's experiences.  Am also on a bit of crusade to get Gynaecologists (especially male ones) to be clearer in the terminology they use. ' Loss of architecture' really worried me and was never properly explained. 

Hope this is helpful. 

1 like, 5 replies

5 Replies

  • Wlparadise
    Wlparadise Jeanie44

    Posted

    Loss of architecture. That means when your vulva shrinks, clitororis retreats, narrowing of the vagina. All are a LS results of being untreated. My mother was incorrectly diagnosed with thrush and yeast infections. Me too. Once the LS was properly diagnosed we got treatment. Mine was much worse. Red raw fissures, thin skin that ripped at the slightest touch. All steroids, estrogen, testosterone, set me on fire and made it worse. Nystatin triamcinolone Acetonide and Nystop powder were the only thing that worked. I have started the Mona Lisa Touch treatments to restore the ARCHITECTURE. #3 treatment on Friday
  • susan99000
    susan99000 Jeanie44

    Posted

    i kept trying to convince myself that i would get better and everything would return to normal! not a chance,my"architecture" is  getting demolished by the month,and when i had a hysterectomy last year in my notes i had" ampitation of the cervix"!! why don`t dr`s either write in laymans terms or baffle us with long words.i wonder if i told them that "my man in the boat has now lost his paddles" would he know that my labora majora and part of my clitoris had gone!! good luck whatever you`ve got x

  • arlee
    arlee Jeanie44

    Posted

    That’s what happened to me. I’ve had vaginal atrophy for 7 years now I used vsgifem and now using estragyn. I had months when I had no burning and pain then it would rear it’s ugly head 

    This past June I had a bad flare up of burning so I saw my new gyno (very young) and she checked me and said my bladder was in decent. So I saw her colleague a uryo gyno in the same medical clinic. I kept going back because nothing was helping. This past October she said u have LS because of architecture changed. She didn’t do biopsy and gave me Clob. Used for 5,weeks everyday then once day.  I don’t have white patches. The cream didn’t help at all. This past week I saw her again was tested for yeast it came back positive. I used the cream internally last night. Today burning pain worse.  Now my dr said I’m not convinced it’s LS. So that means I used a very strong steroid for no reason?  Very confusing. She will probably send for a colposcopy to really examine vulvar area 

    Sorry this is so long! 

  • arlee
    arlee Jeanie44

    Posted

    That’s exactly what I was told loss of architecture  so I was started in clob - no biopsy.  Used it for few months until I had culture last week. Was positive for yeast. I’ve used it for 3 days. No relief and I have burning as well. I feel very confused and would like to see a vulvar specialist but no one here

    How are u feeling now?

    • s14825
      s14825 arlee

      Posted

      Hi arlee, did you manage to find a treatment that worked for you?

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