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Written off!

Posted , 17 users are following.

kathryn07219
kathryn07219

Well, here's a first.  Went to my usual gynae check up at which I was asked how things were.  Said I had flare ups from time to time but was using clob as directed, that I was part of this online forum and that I appreciated that there were lots of women worse of than me.  The gynae said that he was going to discharge me from the clinic as they hadn't really anything more to offer me and that if I was worried about anything I could go back again.  So, there we are.  Nothing more to offer me.  Straight to the point.  Is my condition improving?  No, I'm just living with it.  It itches from time to time.  I have adhesions from time to time.  My clitoris is fusing over.  My bladder problems are still there - which may be related. Is the medical profession doing any real research into this condition or is it not of enough interest?!

 

1 like, 63 replies

63 Replies

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  • lesile
    lesile kathryn07219

    Posted

    Like Karen I have just been diagnosed with lichen planus. Sent to specialist by dentist and diagnosed last week. So problems both ends. When I told my doctor he was bit dismissive. Still coming to terms with that on top of LS. At least the consultant this time is keeping me on regular check ups. Wish was same for LS

     

    • karen41728
      karen41728 lesile

      Posted

      Hi Leslie do you get the burning with spicy foods and how old are you just interested to know whether you had any abnormal cells after a cervical smear years ago I know what your going through just a nightmare Xx
    • lesile
      lesile karen41728

      Posted

      Hi Karen. I had a lot of thrush infections and then abnormal cells when I had a D&C in my 30s. I had menopause mid 40s. I also have rheumatoid arthritis which is another illness that seems to link with LS as it is inflammatory. Diagnosed with LS at 42 but only given clob cream then. 

      I am 60 and before I was diagnosed with lichen planus I was having problems eating spicy and things like vinegar. 

      Not feeling very positive mainly as there is not a lot of help from 

    • karen41728
      karen41728 lesile

      Posted

      What treatment did you have leslie for the abnormal cells I had colposcopy and then a cone biopsy then had yearly smears I really think this is linked to LP, I talk to a few ladies who are suffering like us in fact I'm meeting up with one lady soon, where are you from Leslie I am in manchester in Great Britain X
    • lesile
      lesile karen41728

      Posted

      Hi just had yearly smears after cone biopsy. I also read that there are a few ladies who connect it to having episectomy after giving birth. 

      I live near Preston so not so far away.  Would be good to meet up with fellow sufferers. We all seem to be suffering alone don't we. 

    • karen41728
      karen41728 lesile

      Posted

      Oh your close then to me Leslie I'm in swinton yeah would be great to meet up and I know what you mean, it's something we can't really talk about to others we might as well suffer together, I'm going through a divorce my husband cheated on me led a double life for 3 years it's so stressful now he wants the house selling even though he's living with his partner I'm in court in dec so I live alone which doesn't help, I have 3 daughters 2 are married and 1 has just started uni in leeds, how about you Leslie X
    • lesile
      lesile karen41728

      Posted

      Hi karen

      I had to finish work 4 years ago due to ill health. Took a couple of accountancy courses. Then had massive flare up and had to finish.

      You are very brave back at uni good luck to you. The stress of everything you are going through must be making everything worse.

    • karen41728
      karen41728 lesile

      Posted

      Hi Leslie

      You've got mixed up it's my youngest daughter at uni not me haha I'm a mobile hairdresser shall we arrange to meet up are you on Facebook X

    • lesile
      lesile karen41728

      Posted

      Yes definitely got mixed up. could be a sign of age. Anyway it would be great to meet up. I am on facebook what's yr surname I will friend you so I can send message.x
    • lesile
      lesile karen41728

      Posted

      My reply is being moderated so might not get posted . Not sure why but I mention facebook. X
    • karen41728
      karen41728 lesile

      Posted

      That's strange my surname is nightingale it's a pic of my 3 daughters x
    • lesile
      lesile karen41728

      Posted

      Hope I get the right one. Otherwise I am Lesley Clarke with dog doing a selfie x
    • bennetta
      bennetta lesile

      Posted

      I just typed FB when I was connecting with another lady and then we private messaged each other our email. Sometimes I think sites have issues saying other sites or emails.
    • judy02533
      judy02533 karen41728

      Posted

      Hi karen, I had the same in my late 30's.  I had smears every 6 months for quite awhile after.  I have't had problems with the smears since then.  And I wasn't diag. with LS until 4 mo. ago.  I am 69. 
    • lesile
      lesile bennetta

      Posted

      Thanks bennetta. Managed to sort it. Just took me by surprise.
    • lesile
      lesile karen41728

      Posted

      Hi Karen 

      it doesn't seem to have come through as added. I will send you another request. X

    • karen41728
      karen41728

      Posted

      Have you sent the Facebook request Lesile X
    • karen41728
      karen41728 judy02533

      Posted

      Hi judy do you have problems with your mouth as well like the burning Xx
    • karen41728
      karen41728 lesile

      Posted

      Hi Lesile

      There's a mix up ha Iv added the wrong person what's your surname Xx

    • lesile
      lesile karen41728

      Posted

      Hi karen

      lesley Clarke picture of me and Labrador. Like a selfie . More of dog. I have tried to add you but it will not let me. We will get there eventually. Xx

    • karen41728
      karen41728 lesile

      Posted

      Okay Leslie will have a look... How's it going, my mouth has been sore lately it's so annoying can't eat what we want did you say you live near Preston it's only round the corner from me X
    • karen41728
      karen41728

      Posted

      Can't even find your picture Leslie do you know how to private message X
    • lesile
      lesile karen41728

      Posted

      Proving to be a marathon. I found your page but can't add you as a friend. I tried to send a message but sounds like you haven't got that. Can you look at yr settings. They might be set on high. I will ask my son tonight and see if he has any ideas.
    • karen41728
      karen41728 lesile

      Posted

      Hi Leslie

      How are you ? Been looking on Facebook but can't even find your picture, my mouth has been so sore lately driving me mad l round my lips are red and that cream the doctor gave me is a waste if time, don't know if you have any ideas it just looks awful I don't even want to go out Iv tried everything x

    • pat48434
      pat48434 karen41728

      Posted

      My dentist took a Bio and found Lichen Planus.  I was given a tiny tube of Fluocinonide Gel  0.05%.  It says on the lable not to be used internally but Dentist said put a tiny bit on tip of finger and rub on sore part of gums.  After a few minutes of absorpition spit out.  I used it twice a day.  Worked well.  Lost my husband 6 weeks ago and have a 24 year old daughter adopted from foster care with mental health problems.  I expected the flairups.  Am 77, hoping to make it to 78, LOL.  Regards to all LS, LP friends.

       

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