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How do I get people to take me seriously?

Posted , 13 users are following.

gemma30672
gemma30672

Hi all I am a new user and apologies for my long post.

I have had signs of LS for a few years, it’s taken 7 months to see a dermatologist. 3 GPs (the one who was certain I have LS is also a dermatologist/GP) I have classic white patches, severe itching , started out as itchy spots, vulval and clitoral tares dermovate helps (but only put on that 2 weeks ago but had to stop 1 week before seeing consultant) the dermatologist was nasty to me. Saying she believes it’s eczema and said “ you should be pleased I think it’s eczema because LS is a serious skin condition you know”she’s acting like I diagnosed myself, the white patches were clear as day and with eczema that doesn’t happen. I have to have a correct diagnosis as with LS you will be required to use it for life (recommended by a GP) if it was eczema you wouldn’t. She insisted I am too young for LS as I am 33 but I know it can happen to anyone men, women and children. She told me that I can use Dermovate still but my GP needed confirmation that I can use it and now I don’t have permission because she’s not put it in her letter as my GP won’t go on my word. Without using it I am becoming distressed the itchiness is so severe I struggle to go out had a biopsy (had to beg for that as I said I am sorry 3 Drs have said otherwise)  but she’s basically using my mental health problems (I have bulimia) as an excuse to make out it’s psychological. What ever the results from the biopsy the complaint I made to the hospital still stands. How do I deal with all this? I feel so incredibly alone.

1 like, 28 replies

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  • Guest
    Guest gemma30672

    Posted

    Gemma

    I am so very sorry to hear about your experience.  I was diagnosed by a Gynaecologist in March this year and also told I had a growth that would have to be removed.  I was told to use Dermovate, but after three weeks of being on this cream I had a major flare up, never had anything like it before and it lasted over 5 weeks.  Two lots of Anti-biotics because I tore the skin with scratching and caused an infection and various other medication to help with the itching, ie Steroids etc.  At the moment I have only been using Epimax Cream at night for relief.  I saw the Gynaecologist today to have the growth removed and now have to wait about a month for the results of the biopsy.  My Gynaecologist has been so nice and so supportive and I have been told not to use the Dermovate again.  I am praying I never have a flare up like this again, but time will tell.  I told the lady today that the symptoms are actually a living HELL!  Unless you suffer from this condition people cannot understand the symptoms, it is not just an "itch", I have NEVER experienced anything like it.  A friend of my Daughter has the same condition and was able to tell my Daughter the symptoms and they were like mine, so at the moment I do not feel alone!  But until March this year I had NEVER heard of the condition and I think women need to start speaking about it and maybe then more help will be given to the sufferers!  Also to be taken seriously!  I do hope you get help sooner than later.  My thoughts are with you.  I understand!  Sandra.

     

    • gemma30672
      gemma30672 Guest

      Posted

      Thank you so much for replying. I am definitely speaking up to people so hope to one day make a change and make people understand. My thoughts are with you too.
  • marnie91241
    marnie91241 gemma30672

    Posted

    Hi Gemma,

     I'm sorry you are having such an ordeal with a diagnosis. Are you able to get some borax powder where you live? that is a big help for a lot of us with LS. Also, you can use olive oil, coconut oil, and plant oils are helpful. There are a few groups on Facebook that are of great support for LS. One I am part of is Healing Through Borax for Women. We're hear for you!!

    Marnie

    • gemma30672
      gemma30672 marnie91241

      Posted

      Marnie thank you so much for your reply. I don’t know if they do borax powder I will ask though tomorrow when I speak to GP as I have so many allergies on top of LS and Interstitial Cystits. I am no longer on Facebook sadly. I have used coconut oil but GP didn’t like me using it not sure why but might have to give it another go because I feel at my wits end. 
  • sandra01720
    sandra01720 gemma30672

    Posted

    Her comment that you’re too young for LS is seriously ridiculous. I think I started as a teenager although  Not diagnosed till I was in my 40s. It really sounds like LS.  The itching was over the top for me at times. It felt like bugs crawling under my skin. Thankfully, I rarely feel that anymore as my condition is quite easily managed at this point. 
    • gemma30672
      gemma30672 sandra01720

      Posted

      I know, it’s completely crazy I think she must of got her degree from a crisp packet 😂. They are supposed to be clued up it’s amazing how 3 GPs have said it now. She’s put on my letter to my GP a note for a colleague of hers to see me and said “could you see this patient who isn’t convinced by my diagnosis of eczema......” is this woman for real? She loved trying to put it down to mental health problems though. It’s amazing how many times these people have got it wrong and I got it right I am not even qualified but I know myself better than they ever will. I don’t think been treated for thrush for years has done any good though (I didn’t have it) they just kept treating me weekly I told them I was having a reaction to canesten cream and 1 GP said that I was over reacting. After years I finally went back to my GP and said I was so severely reacting I could of torn myself to bits. Why are people so cruel? they see me as over reacting but it causes so much distress.

    • karen23320
      karen23320 gemma30672

      Posted

      Gemma- One thing we all know for SURE is that stress makes LS worse! It sounds like you need to find a new Dr. who has a better bedside manner, who will actually listen to you and will be supportive. On  another note, if you hv active bulemia, be aware that you can get LS sores in your mouth as well. If you are causing little tears in your mouth and throat by making yourself throw up, you are creating an open cut environment for  your LS to manifest itself there.  I use Toothpadte with baking soda everynight to ward off sores in the mouth. I was only diagnosed 1 month ago, so I’m still learning. I am a therapist who works in a Psychiatric Hospital and your GP or Derm should not be using your mental health state to dismiss the physical symptoms you are having with the LS. 

      Switch  Dr. ASAP! Good luck to you! 

    • gemma30672
      gemma30672 karen23320

      Posted

      Thank you For replying Karen. She hasn’t checked my mouth which from what I understand she should of done. There is a male consultant that I was originally seeing (about allergy testing years ago)  I am mentioning to my GP tomorrow that I will only see him I have great respect for him she said she’s referred me on to someone else but I have major trust issues particularly as I feel this dermatologist has given me a bad name already. I feel like the dermatologist letter says it all really. The hospital are going to look into it, i know what you mean by the stress but my issue is originally I was seen as someone with BPD but I actually have CPTSD not all but a lot of professionals saw me as over reacting, lying, attention seeking etc, one problem I find in myself is that I can’t lie about anything and they don’t believe me when I say I tell the truth about everything. I started to doubt myself that I even had a problem was it real? I had to ask people to make sure that the symptoms were there.
    • karen23320
      karen23320 gemma30672

      Posted

      If you have been diagnosed with C- PTSD then your trust issues, self- doubt and frustration are all understandable. From the symptoms you described it sure sounds like LS. As I said, I was only diagnosed 1 month ago and am by no means an expert, but if the Dr. I am talking to doubts me or knows less than I do about other or alternative treatments, it is time to find a different Dr. 
  • hanny32508
    hanny32508 gemma30672

    Posted

    Terrible experience.  I agree with other comments: find an other doctor as soon as possible.  Next - try the baking soda or borax baths.  Gave me tremendous relieve.  (1/3 cup in a full bath for the baking soda OR borax 1/6 cup)  Do these baths every other day.  In case you have no bath try a sitz bath that fits over the toilet bowl, add a few tblsp of baking soda, less for borax.  

    Next to that - cut out added sugar.  Most LS patients are affected by sugar.  Worth a try perhaps.  Check out also whether perhaps you are affected by dairy products. (I'm affected by sugar and dairy.)  

    After every bathroom visit try rinsing with a few pinches of either baking soda or borax in a Perin bottle with warm water.  Deb dry.  

    Once the itching subsides life will look already a whole lot better, I assure you.

    • gemma30672
      gemma30672 hanny32508

      Posted

      hanny thank you. I will not go back to that dermatologist for sure. When I wrote my email of complaint this morning I told them I didn’t want to see her again and that even when the results come back from the biopsy I would rather another Dermatologist writes to me or to send the results to my GP and I will pick it up from them.
    • Guest
      Guest gemma30672

      Posted

      Do you have a mental health worker who can support you with this?
    • gemma30672
      gemma30672 Guest

      Posted

      Hi joe thank you for your reply. My mental health team don’t see me on a regular basis and they don’t like to get involved with the physical health conditions including complaints but I am a fighter definitely I won’t let it drop. I am going to tell my GP (over phone consultation) that it’s also having a major impact on my mental health like struggling to go out, he does take it seriously and he’s worked in mental health I have known him 14 years he’s the one I tend to speak to when things get bad.
    • Guest
      Guest gemma30672

      Posted

      Ok at least if you have a good GP that's something, I too have a mental health diagnosis (bipolar2) but as I commented in another thread I actually find the LS more devastating. I think what I find hard is the lack of recognition to the emotional impact of LS, when I was at vulva clinic last week the Dr was nice but it was the same old,,, just use the dermovate along with hydramol to moisturise. 

      Anyway take it easy, don't push too hard against the system because if you are anything like me when your mood changes you will feel guilt about the way you've behaved, even when your behaviour has been totally appropriate, and on goes the vicious cycle. 

       

  • Nancy_K_B
    Nancy_K_B gemma30672

    Posted

    Dear Gemma` in the end we cannot wake other people, even physicians up ( I truly think they are so overworked that they have no time to up date their original training) ; we just need to trust our own inner knowing and our own research abilities. 

    here is what I found out from 3 mnths online daily: I humbly suggest that your read it print it off and give a copy to every physician you run into - HELP them get educated to this supposedly rare disease.

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    Blessings 

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