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Sorry I haven't been in touch for a long while!   Things haven't been so easy for me!   I was recommended a gyno about an hour's drive from where I live.  She always keeps me waiting for at least an hour, sometimes two, and when I eventually have my appointment, the examination is very cursory, she advises me to stop using coconut oil - which is perfect for me - and start using nappy rash cream, which doesn't suit me at all!  Very sticky!  I feel very despondant, as I do not feel this is at all helpful and I lose most of the afternoon driving there and back, with a long wait in between.  I wish I hadn't left my dermatologist, who at least gave me sound advice and really seemed interested in my case.  How can I find someone else, who is knowledgeable with LS?  I live in Rickmansworth in Hertfordshire.  Good luck to you all by the way xx

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  • Posted

    That's so disappointing. It's sounds like you know more than her. You would think in the uk we should be able to get sound advice. Can you get up to London where there are Vulva clinics. Or is there a vulva clinic at your local hospital
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  • Posted

    Hi there. That is shocking. Doesn't inspire confidence does it speaking to a professional who recommends nappy rash cream. Could you not go back to your GP at the very least and tell them what you have found to help you and can he/she offer any further advice ? It's worth a try I think. If asked about gyn.... Tell the truth.... Land them right in it !! Can't hurt you any more than this condition does. Take heart... You will find relief through hard work and perseverance. Don't lose heart Wendy14679 Thinking of you. Good Luck xx
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    • Posted

      Thank you for your kind words!   I did ask my GP if he could recommend someone, but he was unable to advise me.  I have gone back to using coconut oil, which really helps my condition.  I am still desperate to find someone nearer to where I am living and preferably who can give me good advice and show an interest!  It is all very disheartening!!
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  • Posted

    Hi Wendy so sorry to hear you are having such a bad time. Any chance you can get to Whipps Cross hospital ? I see a brilliant dermatologist there who specialises in vulval health.
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    • Posted

      Hi Nannylin.   I am not familiar with Whipps Cross hospital.  Is it near Rickmansworth or Watford, which are the two nearest towns to where I live?
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  • Posted

    Hi,  I live in Sussex and my GP referred me to a combined vulval clinic and I saw a dermatologist and a gynaecologist together. I had to travel to a hospital in another town and there was a bit of a wait on the NHS as the clinic is only held every 6 weeks.  However it was very helpful to get both their opinions.  For self help measures I find this forum very useful. 
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  • Posted

    Hi Wendy, sorry about your doctor problem!  That is just terrible!  I live in the US (California) and we are struggling with our (wonderful....not!) Obamacare.  But thankfully, I still have a good gyn and GP doctor.  It would be interesting to find out just how many of us have this disease.  I wish you well, and would also suggest you follow your instincts and good advice found on this forum.
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    • Posted

      Thank you Jeri24294.  I wish you all the best too.  I would love to know how many of us suffer with LS or lichen planus.  I have both!  It is really every man for himself and I thank heavens for this particular forum, which is filled with such good advice and genuinely kind ladies.  God bless you all!
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  • Posted

    Wendy, can't you got back to your dermatologist? Sounds like you got better care there. Or is he/she not a vulval dermo? If not I guess it makes it impossible if they can't at least examine you! I am sorry for your experience and really you shouldn't have to put up with that. Surely the doctor is not private and you are not paying there? We expect to wait on the NHS or whatever you call it there, but not private! 

    If you don't like rash ointment, don't use it. Go back to coconut oil and back to your doctor and find someone else if you can. A dermo specialist in vulval conditions is far far better than a gynae and if you can find in in the region or county where you live I think a long drive and a private consult is worthwhile. Gynaes don't even want to know, well, my two first gynaes didn't, one said atrophy, the other LS even though it wasn't! Tbh the 2nd one was more interested in my slight prolapse. For two specialists to not recognise lichen Planus quite shocks me now in retrospect. 

    I used to do a three hour round trip to my dermo and pay her 300 a pop but luckily recently found a specialist here in my home town at180 and she's great. 

    Good luck with your search for that person.

    You will find like many of us that once you get it under some control and on a good regimen for you, then you just need to see them to rule out the slight risk of anything sinister twice a year or so. 

     

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    • Posted

      Hi Lynne 1945.   I absolutely agree with you.  I only stopped seeing my dermatologist, who was great by the way, because after an examination she said "see you in a year's time!!" which seemed too long.  I was private and had quite a long drive to see her, so was very disappointed with this lack of interest.  I am not getting much itchiness these days, but I do occasionally get sore.  I have practically cut out bread from my diet but my downfall is sugar!  I have a very sweet tooth!!

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