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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

28 Replies

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  • lynn_78641
    lynn_78641 gemma30672

    Posted

     Well, first of all my dear you are not alone, never in this group. Don’t always take dermatologists so seriously because they often have very black-and-white thinking. Many know this and that’s why they are in this group. Most dermatologists believe that the only solution for LS is extremely potent steroid cream which if used too much or often can have extremely bad side effects and doesn’t necessarily slow down LS. (I’m a good example of someone who grew immune to the strongest possible steroid - clobetasol and so it no longer works so I don’t use it! ) Some people claim it helps a lot with the itching, I’m sure the cream you mention helps to reduce inflammation as that’s what steroids do but there are many other solutions for you, that’s why it’s good to be a part of this group and read all the posts  as many here have come up with their own natural healing salves, sprays and creams specifically for LS. Also that’s baloney that you’re too young,  I was diagnosed by biopsy at 33, that was 15 years ago and I had definitely had it for at least five years before that. Re the extreme itching, it sounds like maybe you can use a little tiny bit of the steroid just until you see the doctor just to help with the itching. Even if you had eczema, the standard derma solution for eczema is strong steroid cream, so if you use a tiny bit (wash hands always carefully after!) it should be ok.  This is just my suggested solution for you until you get your next appointment and diagnosis. I personally suffer from extreme anxiety and this condition has not helped. Many people in this group have other conditions like hormone imbalances or thyroid issues, however you can find comfort in this group. And from your story, it sounds like that was a very bad dermatologist, she has no right to use psychological conditions to make you feel insecure. screw that! One natural product a lot of people here use is 100% natural borax either in a bath or in a small spray bottle with water to apply after you go to the bathroom. Others use a combo of baking soda or bicarbonate and water, in the same way you use the borax. These can help with itching and balance your ph! Also what you put in your body does affect LS- thus a low sugar diet is helpful in reducing itching, among other things. Hang in there dear 
    • gemma30672
      gemma30672 lynn_78641

      Posted

      Thank you so much for your reply.  Lynn it really is good to know that I have people on here to help me through.  You guys are the best. I hope this doesn’t sound odd but I am strangely looking forward to a diagnosis then I can feel like I am getting some where with them. 
    • lynn_78641
      lynn_78641 gemma30672

      Posted

      Gemma, I totally get it. Its a relief to know what we have and know there are solutions and support!! Good luck and lets keep talking
  • Bridge_of_Sighs
    Bridge_of_Sighs gemma30672

    Posted

    Gemma I was misdiagnosed for years, my GP, gynaes etc. I tried every dr in my practice and was eventually told I was a hypochondriac. Then I moved house and with little faith I went to a new GP. Her first words were 'How did you get in this state?' You just need one person to recognise your symptoms and you're in the system.

    Are you comfortable saying what area you are in? Maybe there's someone on this forum near you, who can suggest a doctor they know is good?

    So sorry you're having this rubbish experience. I hope someone takes you seriously soon.

    Best of luck

    Bridge

    • gemma30672
      gemma30672 Bridge_of_Sighs

      Posted

      Thank you so much Bridge of Sighs for replying. I live in the U.K. and unfortunately you have to be referred to a specialist. Due to major health problems I can’t work so wouldn’t be able to afford private health care. I have refused to see that woman again I am hoping once the investigation is sorted (they are supposed to respond by the 22nd August) I can then get an appointment with the only dermatologist I trust. My GP now thinks I am being overdramatic now. I don’t know how he can dare, he wasn’t there when she spoke to me like she did. I nearly gave up seeing Drs, now though I realise I must find someone who can and will take me seriously. 

      Thank you again.

    • Bridge_of_Sighs
      Bridge_of_Sighs gemma30672

      Posted

      Hi Gemma, I'm in the UK too, you could put out a post with a title of 'Anyone got a doctor in (County name) who recognises LS?' and see if you get any responses. With any luck there'll be one near you.

      In Bristol there's a vulval dermatology clinic which sees a lot of LS, there are a handful around the country, you could google them, though you'd still need the referral.

      I also know a couple of people who've been successfully treated at sexual health clinics because their own GPs were rubbish.

      Courage and strength to you

      Bridge

  • Guest
    Guest gemma30672

    Posted

    Hi Gemma, I am in Scotland, have you thought about trying the sexual health drop in  clinic if there is one in your area? I attended them with itch and pain and it was them who diagnosed and gave me hydramol and dermovate. They reappointed me for 3 months later and when I went back although I hardly had any symptoms at that point they still referred me onto the Vulva/gynae clinic. After being seen by them they referred me onto dermatology and when recently seen by them I was quite flared so they have now scheduled me for patch testing to make sure I am not allergic to any of the creams/ointments I use, they have also asked me to bring along any non prescribed treatments I use and will test for them as well. Hopefully you will get seen soon.
  • Guest
    Guest gemma30672

    Posted

    Gemma forgot to say here in Scotland if you attend sexual health services they do not inform your GP unless you give specific consent for them to do so. 
  • Blueplum
    Blueplum gemma30672

    Posted

    Hi Gemma, I’ve just come across your post. Please please stay strong be positive you have fight this horrible disease we are all here for u. Your situation sounds similar to mine tbh. 

    I’ve made a formal complaint against the dermatologist which I was referred too, and it’s an on going process. These doctors don’t have a clue you have to feed them the information, they also just treat you a file number. Show no emotions and have no sympathy. Stay strong, my advice would be do your research & ask your gp to refer you the the right places. Keep going back if you have too. I’ve seen a few doctors till one was the one that’s been helpful & I keep going back to her for help. Also I would recommend taking pics of the area. Have you had the biopsy? 

    • gemma30672
      gemma30672 Blueplum

      Posted

      Hi there. Yes I had the biopsy just waiting on the results I have had some very frustrating Drs I am changing GP surgeries (they tend to dismiss my symptoms as one of attention seeking) I am very complicated though history wise. I have other things going on that is gynaecological but refused a referral.
    • Blueplum
      Blueplum gemma30672

      Posted

      Hya hun, I my self have other health issues too. It’s hard to get the right sort of care etc. you have to do a lot of research yourself. Hope you find a good GP who will be able to support you. Read the surgery reviews before committing to them. Good luck. 
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