No idea what to do now!! Tears and weakness

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Hi,

A little long winded but....

So a few months ago I saw a dr who thought it was possible LS that was causing my intense, inflammation, itching and tearing. I was given dermovate ointment which made no difference after 6 weeks.

Hospital appointment with gynae wasn't sure it was LS and wanted to prescribe be trimovate which wasn't available so gave me something else beginning with T (can't remember sorry!) this also didn't help!

Second appointment with dermatologist she thought it looked okay and could explain why it was causing me so much issue. Prescribed trimovate and this helped a little, but not a lot and unfortunately in her letter to GP put down dermovate instead and so dr won't give me more trimovate and next appointment not till nov!

I am really struggling with this now. I feel raw, it's red, inflamed, itch and I am having regular tears in my vulva and perineum which are painful! I can't tolerate sex with my husband and were supposed to be trying for a baby!! I have no idea what I'm supposed to do, what creams to try, or even how bit to scratch!!

Can anyone recommend anything that worked for them?? I'm about to go on holiday and worried this is going to ruin it as I don't want to be in pain.

Thank you in advance for any respondes.

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13 Replies

  • Posted

    Hi! When I was first diagnosed I head the tears, and my skin was white. Is yours white at all? The only thing that helped was the steroid (clobestasol). Have they given you a steroid to try? I abstained from sex until healed. When your skin is weak and you have sex, you can create more tears. People had suggested Epsom baths but literally everything made it worse until I got the steroid. Also, for temporary relief I was given a topical pain relief. If you don't have the steroid ask for that, and ask if they can give you a topical pain reliever until it is healed.
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    • Posted

      Lidocaine! That's what I was given for temporary pain relief. Also they gave me Atarax which is an antihistamine for skin itching which also makes you drowsy. That helped me get enough relief to get to bed. I was in so much pain that was the only way I got by.
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  • Posted

    I'd take the tube of trimovate to the GP and re-explain human error. I'd say 'This is working. I can't wait 2 more months!' and wouldn't leave until progress was made.
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    • Posted

      I agree! Don't wait!! Before being diagnosed I was in and out probably 10 times to different doctors/emergency rooms because it was so bad. It won't get better just leaving it alone. Go back as soon as you can and ask for the steroid.
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    • Posted

      I agree, I would never let someones elses mistake cause me such pain.  Its time to get cross...
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    • Posted

      Thank you, the problem is my doctor doesn't agree that trimovate is right for my problem so is refusing to prescribe on that basis! I have written a letter, made numerous calls and complained to the practise manager!

      Although the trimovate helped a little it was not solving the issue and I was still having irritation and tears. It just soothed more than the dermovate steroid ointment.

      Is there anything I should be trying non medical? Many thing that might help or soothe?

      Thanks for all the responses!

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    • Posted

      Keep trying, switch docs if you need and it's possible. I had to finally say what I thought it was to a doc, and he went and looked it up and agreed, but I had to fight for it.

      Did you try doing the steroid at night and the other in the AM?

      Some people suggested cutting out sugar, and I've so read positives to a vegan diet and helping LS. I think there are a few feeds on diet and LS, I'm not sure how to search for them but I know it has been discussed.

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    • Posted

      I was applying the steroid twice a day as suggested but maybe could try alternating with the other if I get prescribed!

      The sugar thing makes sense, I am a diabetic and my levels are a bit out of control, I will look into this with my practice nurse.

      Thank you for taking the time to reply, it's just soul destroying to manage isn't it?

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    • Posted

      Phone the consultants secretary, and or the senior nurse at the clinic you attended. Explain your problem, ask to make an appointment to SPEAK to the consultant on the phone  get them to email your gp...so be armed with this detail.... Phone the hospital switch board ask for the name of the appropriate secretary and when he / she is available and phone EARLY in the morning as soon as they get to work...ask the switch board again for this information.. That way you will have a better chance of getting thro.

      write formally to the consultant explaining your issue AND copy the senior partner of the gp practice...by name. Be polite use bullet points, don't be over emotional just factual ...even ask for a signature to ensure the letter is not "lost" this may cost more but worth the assurance that you are very serious about the change to your prescription. It is YOUR body. Try and find what the other T  medicine you had

      good luck Sue

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    • Posted

      Check the Alternative site, they chatter on about various diets tried some that worked the rationale for having one or other diet.  Look at the full list of topics in the forum The monthly newsletter will give them

      good luck

       

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  • Posted

    Fabala, is it 'Temovate' maybe not Trimovate? Because if it's Temovate it's the same as Dermovate. They're just different brands of clobetasol propionate .05%.

    This medication takes a long time to work. It took two years for me and my gynae switched me from Dermovate to Protopic after 18 months. The drug goes deep down and very[u] gradually[/u] fights the inflammation that produces the top layer of crappy skin in LS. If you have friction-sex while you are flared up, you can expect the LS to get worse. Most of us here have had success soothing it with baking soda soaks and rinses (1/3 cup in a bath, 1 tbsp in a splash/sitz basin, two pinches in a squirt bottle). Bodily fluids including urine and sweat irritate LS, so many of us use food grade coconut oil (it's like shortening) as a moisturizer and barrier between pees when we're flared up. Vaseline is a great barrier and really good when you have a tear, because the air can't sting the open wound. You can't use soap to wash your undercarriage and you must wear loose clothing and cotton panties. Eating large servings of sugar is like pouring gasoline on a fire. This doesn't mean you have to cut out every bit, but if you eat candy and desserts (and many of us are tempted exactly when we're flared up and stressed-out by LS) you could cut those out. Fruit juice is also too much sugar.

    On holiday, swimming in salt water or fresh clean lakes – very good; chlorinated public swimming pools, very bad. Pack on the Vaseline before swimming.

    And relax and have fun. That's the best thing you can do. Freaking out is the worst thing. We all have had our moments, but try and make peace a priority.

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  • Posted

    I looked up Trimovate. I wouldn't want it – it's weak steroid cream with antibiotic and antifungal. Dermovate is the standard – ointment is a bit better than cream. But you have to use it longterm and over the first couple of months graduate down to twice a week.
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  • Posted

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