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I'm newly diagnosed after 4 years of misdiagnoses by my GP. Im scared by the chance of vulva cancer

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Jackiem26
Jackiem26

I'm newly diagnosed and when I asked for some info the doctor left me in the consulting room and went out in the waiting room and shouted to the nurse in full hearing of anyone in the waiting room ..... Info for this lady wth lichen sclerosis ! I was mortified and couldn't ask questions ..... Will I get cancer?

0 likes, 28 replies

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  • alistar
    alistar Jackiem26

    Posted

    I'm sorry to hear about that. I feel like many of us have had some negative experience with doctors. When I was first diagnosed it was so downplayed, "get this cream it'll clear it up" that I had no idea the severity of LS. Needless to say, I've now experience some fusing. And even now after being re-diagnosed, the doctor who did it also didn't seem to place alot of weight on it. As for the cancer, what I've read is we are at higher risk, but that about 5% of LS sufferers get cancer. I could be wrong, my brain has been in a bit of a fog these days as I've just experienced my first self-identified flare-up caused by the stress of moving and trying to find a new home for my cat.
  • nancyo
    nancyo Jackiem26

    Posted

    so how did the doctor reach his diagnosis, from a biopsy?? or
    • Jackiem26
      Jackiem26 nancyo

      Posted

      After 4 yrs of being mis diagnosed by my doctor the practice nurse referred me to the hospital, doctor there diagnosed me and gave me some cream and sent me home with the option to go back to her in six months or my GP, I opted to go back to her, saw a different DR who did a biopsy and told me there was nothing worrying and go back in six month
    • nancyo
      nancyo Jackiem26

      Posted

      Confused, did biopsy confirm diagnosis??? or
  • TexinSF
    TexinSF Jackiem26

    Posted

    That is horrible!! Doesn't mean you will get cancer!! Just make sure you do your regular checkups. I would change doctor's too!!!"
  • lee12629
    lee12629 Jackiem26

    Posted

    Wow sounds like a very unprofesional doctor.Red flag for perhaps a new one?Very low chance of Cancer from LS.Now that you have a diagnosis,just keep an eye on it and use the cortisone cream.Oh and maybe get a doctor that has a better aproach to dealing with patients.
  • lee12629
    lee12629 Jackiem26

    Posted

    B6e the way..is this the same doctor that misdiagnosed you for 4 years?
  • hanny32508
    hanny32508 Jackiem26

    Posted

    Just awfull,  how could the man do such a thing.  

    Cancer - I don't think that that will happen any time soon.  In the beginning I was scared about that as well, but over time experienced that taking good care of LS is best,  

    Learn as much as you can from this site and see what works for others.  For me for instance - baking soda baths and rinses have proven to be very helpful.  Plus diet, use of coconut oil for lubrication.  This next to the minimum amount of Globetasol.  Good care is most important.  

    By the way - did the nurse indeed give you LS info?  

    • Jackiem26
      Jackiem26 hanny32508

      Posted

      Yes she did but it was very brief and said 4 out of a hundred women got cancer as a result and that betnivate was the only treatment . It was a female doctor I saw at the hospital . She never mentioned bicarbonate or the other treatment you mentioned how do you use it? Thank you for your help
    • Morrell1951
      Morrell1951 Jackiem26

      Posted

      1/3 cup bicarb in a bath, 1tbsp in a basin for a splash I squat in the tub over one) oe a pinch in a squirt bottle. While you're flared up, protect the area from urine with a barrier of Vaseline.

      The kind of cancer LS sufferers are at somewhat higher risk for than average is squamous cell carcinoma, a slow cancer fairly easily cut away. But there are several slow easily detected stages before cancer, which is why we go for checkups twice a year. If the doctor sees anyrhing suspicious at the annual colposcopy clinic , he/she has a colposcope to look in detail and then take care of it at the first sign. So that worry is off your stress list now. And you can stop looking up photos. Those are neglected, undiagnosed cases.

      Stress and sugar (and you know how we tend to pair them ) are friends of LS. So make it your goal to get calm and no more big desserts or chocolate bars or ice cream binges.

    • hanny32508
      hanny32508 Jackiem26

      Posted

      Goes to show you that male or female makes no difference.  It's the very personality that will be of importance.  

      The bicarbonate baths and rinses is my own invention.  I was already using bicarbonate to brush my teeth, due to Lichen Planus in my mouth.  And my mother used it for hard to heal wounds and against infections.  So after my dilation procedure over a year ago I started experimenting with bicarbonate, cause I was afraid of it becoming infected.  

      I was totally surprised at how the baths and rinses improved my situation. And even further surprised when fusions slowly but surely started to melt away.  (I was totally fused up and therefore needed this dilation procedure)  Today there is little fusion left.  When I asked my doctor and nature path it sparked another thought:  the alkaline and accidity balance.  None had connected this to LS.  Later I found info from a doctor who already in the 1920's had made this discovery - when you watch this balance a lot of cancers can not grow, was his claim.  Accidently my diet already was very much in correspondence with this thought.

      Bath (1/3 cup)  rinsing after every bathroom visit (three pinches in a Perins bottle)  I take a baking soda/bicarbonate bath every other day. 

       

    • Jackiem26
      Jackiem26 Morrell1951

      Posted

      I don't go to the colposcopy clinic? Just gynaecologist . Info just says use the cream when you have a flare up, but I don't have flare ups it's there all the time never goes away
    • Morrell1951
      Morrell1951 Jackiem26

      Posted

      As long as you're seeing a gynaecologist twice a year, that's good.
  • Jackiem26
    Jackiem26

    Posted

    I don't have flare ups, it stays itchy all the time, ca anyone give me some more advise please, DR says the cream is the only treatment, no baths, no washing, only wear cotton, no perfume products and only use E45 wash and cream (between the prescription ) and no Vaseline 
    • lee12629
      lee12629

      Posted

      Most of the sites on ls say vaseline is a good thing between steroid application
    • Jackiem26
      Jackiem26 lee12629

      Posted

      My DR said it is ok initially, but causes drying out of skin, which is what should be avoided
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