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So it looks like it is LS!

Posted , 7 users are following.

Cheetah
Cheetah

Just been to the GP this morning and he said that, as I had responded to the Clobederm, it was highly likely that it was LS.  Strangely, I feel a little shocked.  Although I thought it might be that, there was still a part of me thinking there was a possibility it wasn't - if that makes sense.

I've had a lot of support on here with my many questions, so thank you for that.  I'll be seeing him again in a month and am to continue with the Clobderm once a day now, rather than twice a day, as last month.  There's still a possibility he will peform a biopsy, but at the moment, as things seem to be calming down, he's happy for me to continue using the cream in the hope things will clear up completely.   I take it this is the usual way the condition is managed?

He is a GP, but is also a member of the Royal College of Obstetrics and Gynacologists, so I feel confident that he is pretty much on the ball.

0 likes, 12 replies

12 Replies

  • sue162
    sue162 Cheetah

    Posted

    Hi Cheetah

    i know exactly how you feel and it's good you've been diagnosed,  are you post menopausal?  Have you had any shrinkage at all?  In June I went to GP immediately and was dismissed as a cycle injury three Drs later and a battle which has left me so depressed I got referred to gyneo and was told I had this, I got the same cream but want the ointment version as I feel it doesn't spread easily especially on sore tissue.  I went to the sexual health clinic walk in centre for advice as my biopsy procedure is four weeks away and I'm worried about VIN they were fantastic at the GUM clinic and I would recommend them they don't just deal with STD.  The gyneo consultant was not good at giving me reassurance or Information so I went to the GUM clinic for that.  I hate the cream it's sore and dread doing it at bedtime.  Do you feel unlike another auto immune disease it's not something you can tell people for support,  my bits are shrinking horribly no fusion though.  I'm very worried are you?

  • deborah82032
    deborah82032 Cheetah

    Posted

    Yes....it will get better, however if it is LS, it never goes away. Continued treatment with Clob keeps it under control.
  • jenr
    jenr Cheetah

    Posted

    Good luck with the treatment - that's the usual procedure as far as I know. You have to stick at it though and see it through, don't be tempted to stop too soon if things feel much better. I use a 'maintenance' dose of 2 x a weekas well to keep things completely under control. I still have the odd flare-up but the clob helps me to get it back under control. My gynae told me the secret to LS is moisturise, moisturise, moisturise, so get yourself something like EMUAID or almond oil (others will have their own preferences) to keep nice and supple during the day.

    JenR

    • Cheetah
      Cheetah jenr

      Posted

      Thank you, Jenr, for your tip.    I've bought some coconut oil to use and, in the meantime, have been using an emollient.  It's good to know that a maintenance dose can keep things under control.

  • Chrisy
    Chrisy Cheetah

    Posted

    Hi, I am concerned that you may have a biopsy that will come back with a negative result as you have started treatment already. The ls has to be active I am told to get a correct diagnosis. Many have had negative results due to treating with steroids. Biopsy is only worth it in the beginning before treatment. You will have a painful procedure for nothing if this is true. i would be researching this before undergoing any biopsy. Many of us have been diagnosed without biopsy accurately because of the classic white areas and figure of 8 affected area. Good luck
    • sue162
      sue162 Chrisy

      Posted

      What can you do though when the consultant gives you cream NOW and books in for biopsy in four weeks as per NHS waiting time.  We are not specialists they are so surely they would know, this is something I am going to ask when I go.  I was given the cream two weeks ago and thought hang on I'm waiting I haven't had it confirmed.  Went to gum clinic and said I aren't using it she said I have lesions we need them under control to stop scarring as I was very very sore, It's so controversial.

    • Cheetah
      Cheetah Chrisy

      Posted

      Hi Chrisy.  I've been told by a very kind person on here, that you should stop the steroid cream five days before having a biopsy as, if not, you are quite right, you are surely going to have a negative result.  If my GP decides he wants to do a biopsy, this is something I will discuss with him.

  • jane31502
    jane31502 Cheetah

    Posted

    What is the Clobderm? Can it be used internal or just external? Happy this is working for you. Im new to this and questioning everything?
    • Cheetah
      Cheetah jane31502

      Posted

      Hi Jane31502.  Clobederm is a topical corticosteroid cream that should only be used externally.  I put it on the worst areas of inflammation, firstly twice a day, now once a day.  I see my GP again in a month for a review.   I was first prescribed Betnovate, a milder steroid cream, and used this for two weeks, but it wasn't working very well, so the doctor prescribed Clobederm, which is much stronger.  This seems to be making a difference.

  • helen34256
    helen34256 Cheetah

    Posted

    Hi

    I wonder if Clobderm & Clobetasol are the same? I was using the latter

    the my Gyno prescribed 2 % H.C ointment compounded, but from what I understand these ointments thin an already thin skin. The thinner the skin my guess is that it would end up bleeding. I started using a cream

    I found by searching the Internet. Don't know if I can mention it, but it's called Perrin Naturals Creme Complete. Burns a bit  when I first apply it, then gets better. Seems to have gotten rid of the lesions I had. Itching is tolerable to the point that I don't have to scratch the area. I'm looking for something else to try. Anyone trying natural remedies?

    Thanks

    • sue162
      sue162 helen34256

      Posted

      Hi,

      I too too have the cream dr gave me and I hate using it.  It has made me less sore though.  I'd seen the Perrins cream and wish I'd bought it now I bought emu oil it hasn't come yet but now I'm worried it's not the real McCoy, it says to see if it has an Australian number on it or something so I'll see.  If anyone knows do they use the Clob cream and another moisturiser another time of day?  It's so confusing all this.

    • helen34256
      helen34256 sue162

      Posted

      Hi

      I think so far, the Perrins works the best, at least for me. But everyone is different. I'm using Creme Complete, but the next one up from that is  stronger. So if need to, I'll get the stronger one. Hope I won't need it.

      I thought I might try the Emu oil, but not right now. It took a few days after using Perrins for the itching to subside, but it did a great job of healing the lesions I had. Those were really itchy, couldn't stop scratching, that made things worse. Right now I'm happy with the way it is. Sure would be nice if there was a cure. Hate the thought of using it for the rest of my life. I don't want to use the prescription creams, they thin the delicate skin over time. I don't think that's a good thing.

      Good luck to you, hope whatever you use, works for you.

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