In such pain :(

Posted , 12 users are following.

Hi I was diagnosed last year just before Christmas.  Suffer on and off with rips tears and sores,  Sometimes lumps. Most of the time the worst thing is the itchiness.  My gynae prescribed dermovate but I cant get it anywhere it seems to have run out.  Im in Kent England.  Has anyone else managed to find it?  Im put off from using it anyway tbh from a lot of posts I've read on here that it causes/ speeds up the fusing.  My clitorus is changing shape, my labia are completely white and the condition seems to be deteriorating rapidly.  I had it for 2 - 4 years before diagnosis, just thought i had thrush a lot.  These past few weeks I am in such pain I'm walking funny. It's hard to sit down on a wooden dining chair and it stings all the time.  I have been using my son's sudacrem (zinc) at night and that helps me sleep.  Please help I hurt so much sad

3 likes, 14 replies

14 Replies

  • Posted

    Hi there,

    I am in remission (touch wood!!!) at the mo and I put it down to my complate change of diet - no sugar (inc fruit), dairy and gluten. I have also given up meat but that's more of a general health thing. Please try, it's worth a go. Got results fairly quickly.  Wishing u a speedy recovery. 

    xx

  • Posted

    Hi

    The GlaxoSmithKline ( who make Dermovate ) factory burned down last year, it has since been rebuilt and stocks were expected to be back on sale at the end of January, It took me 6 weeks to find a chemist that had a tube. Unfortunately I find Dermovate is the only thing that works for me.

    Maybe some of the other girls on the site might know of a chemist that still has stock

    Good Luck

  • Posted

    I feel for you.  It's an awful state to be in.  And on top not being able to purchase the medicin that will for sure help you in this state and will start to eliminate the itching part. First I would suggest - go back to your gynae and ask him/her where you can fill your prescription.  The gynae should know?!

    Second - read as many of the posts/discussions here as you can.  There is a lot of good info that may be of help to you.  

    Third - Watch your diet as somebody already suggested.  No sugar, no dairy, no gluten, no alcohol are the main things to avoid as much as you can.  And watch your stress level.

    Fourth - try rinsing with baking soda/bicarbonate after every bathroom visit. (three pinches in a spray bottle, the kind of bottle women receive in the hospital after delivering a baby.) It calms things down a bit. Lubricate down there, apply after drying some coconut oil.  (First little while may sting a bit.) This combo of things helps fight the fusing/white patches. Take baking soda baths every other day,  (1/3rd of a cup in a bath)  Sit in it as long as the temperature of the water is pleasant.

    Hope this will help you on your way.    

  • Posted

    My gyno gave me lidocane to help with pain until things were healing. I would go back and ask if they have anything they can give you especially since you're having a hard time locating the prescription. In the US we also have something called Vagisil which is at most of our retail stores and helps with itching and discomfort. I was in so much pain like you are, I also found relief in a heating pad just putting it between my legs. It would wake me in night it hurt so bad. The salt baths burned, regular water burned. The creams help for a short while too. It too about two weeks of being on a steroid to be pain free (tear free).
  • Posted

    hi 

    i am sorry you are suffering so yes go back to doc tell him you cant get it and sometimes you he will have sample packs to get you through . fortunatly i dont have food issues. but have stop drinking a lot of soft drink and gone to drining ice tea and green tea. baby nappy rash cream is good for me too it like a water repellant and keeps skin soft . i have suffered for 14yrs but only joined this group a few weeks ago and have had a lot of support from it so keep reading something may help also my doc put me on antideprssants too that helped for a long time but as my stress off my condition worsened i got higher dose now i am coming slowly off them as i am getting to mamage things better strees is a hugh factor for LS but who cant help it when theres no one to talk too . till i found this site smile 

     keep reading and you are not alone . thank everyone

     

  • Posted

    Hi, i just had my worst flare up, had to plead to see a specialist as my usual one sees me yearly. Eventually got to see a new one who said it had detiorated badly and i had to use a much stronger strength steroid cream to get back on track. He wrote to my GP with prescription - 17 days later i eventually managed to get it faxed over to GP by this time blisters started to appear, it hurt to walk and sit. Anyway my new cream BETAMETHASONE VALERATE 0.1% started working within hours. Now i feel it is recovery again. I use sudacrem during the day as directed by consultant but always feel this soothes but makes me drier. Good luck hope you get sorted out quickly.
  • Posted

    Ladies of the uk this is a long shot for you. I'm from the uk but live in Dubai at the moment I see you guys are having trouble getting your dermivate if you know anyone that's going on holiday to Dubai get them to buy some for you and bring it home. It's an over the counter med in Dubai and it costs roughly £3.00 and it seems stocks are still ok xx
  • Posted

    Ouch ouch ouch....you do sound to be in a sorry pickle. I had no idea dermovate was in short supply. Ask you GP to get in touch with the hospital pharmacy they may well have some stock. Private message the girl from Dubai who seems to have over the counter supplies there, you may be able to mail order from a local contact

    do watch the Dr Golsteinds lecture it takes an hour but explains the rational for treating the area  with powerful steroids. Stress of any kind, including pain, will not improve  the condition, but will frequently exacerbate it, so try and find ways to improve your mood, not easy but beneficial. Mindfulness meditation is said to be very helpful in dealing with pain. Itching - you can sometimes fool your body into getting relief by scratching or rubbing another part of your body 

    use tepid normal saline to swoosh over over undercarriage teaspoon of household salt to a pint of cooled boiled water, this is the same saltiness as the body so shouldn't sting.  Dry the area with cool setting on hairdryer, keep away from smellies in the bath water, don't wear pans  tights or trousers Do wear long skirts tho! You could try crushed ice in a plastic bag wrapped in a damp flannel, after you have protected the area with your barrier ointment 

    i think in your circumstances I would go to a lonely spot and shout as loudly as I could what I thought about the condition Good luck and take care Gwyneth, feel better soon

  • Posted

    Betamethasone valerate (mentioned by someone earlier in this thread) is simply the generic name for betnovate, and this is what I have been provided with since last year when I've been prescribed betnovate - I don't know whether this has anything to do with Glaxo-Smith-Kline being out of action, or whether it just means the license has expired and we can now get a cheaper version. It works just as well as betnovate, which is what I have used since diagnosis 5 years ago. Along with an emollient of course. Good luck, hope thinks improve soon!
  • Posted

    hi, i too suffer with ls and have done since about 10 years now, i too use eumavate and dermovate, but am now having difficulty getting this as they keep telling me find a substitute. i really sympathise with you.
  • Posted

    On another thread Morrell  mentioned another potent but much more expensive ointment, she is in Canada. I will search the various threads and come back to you
  • Posted

    Found the thread; Protopic Tacrolimus ointment, I will check it out to see whether it's available in the U K
  • Posted

    Sorry to hear you're in such pain Gwyneth, I've been using Dermovate but at my last prescription my chemist said they didn't have any (I had no idea it was in short suppy until I read this post), however she asaked if I'd like a generic brand instead which has the same level of Clobetasol Proportionate as the main ingredient. I've been using it for a couple of months and haven't noticed the difference. It's called Clobaderm 0.05%, and it's made by Auden Mckenzie. Make sure you always ask for the ointment, which feels like vaseline, rather than the cream as it's more effective and stays on better. This is true of Dermovate too.

    Good luck to anyone short of Dermovate, there are other brands around you can try, even if only for a short time until Dermovate comes back on the market again. I'm very grateful to the pharmacist for telling me.

     

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.