Been using steriod cream for over a week and swelling has not gone down.

Posted , 7 users are following.

Before when I've had an outbreak I've got rapidly better once using the steriod cream but this time I'm still sore and swollen after 8 days.The itching has improved but swelling still bad. How long does it normally take to get some real relief? Thanks in advance

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  • Posted

    Poor you.  What cream are you using?  I found clobetasol ointment not cream works best.  If you have had a bad break out it may take longer to fully heal but you should see improvement quite quickly.  Have you had a good look to make sure that all is well?  If not it would be a good idea to check it out.  The other thought is how often are you applying the ointment/cream.  After a break out I will go back to a daily regime for a short time until it is under control.  Then slowly reduce treatments back to twice a week.

    I hope this helps you  Good luck and heal well.

  • Posted

    Thanks for your reply Chrisy. I've been applying the ointment twice a day but its made little or no difference. I'm swollen at the top of my thighs too. Think there's something else going on .... The GP had a good look a week or so and said its almost certainly LS and nothing else going on .... Just don't understand why I'm not responding to the steriod cream. I'm seeing a specialist on Friday so hope she'll be able to help. I did have a massive scratching attack in my sleep earlier this week so could still be suffering from the after effects of that ...
    • Posted

      Oh Kate do try not to scratch - it is hard i know but fingernails are not always germ free - you may have invited a bug or two to party.

      I have a technique that does work for me most of the time - I make myself believe when scratching  / rubbing my arm or hand  that my undercarriage is being relieved- may be rubbing the chin or cheek - anyway really  but thin about the relief you get.

      Try and cool the area down, spray attachment on the shower head  perhaps -  tepid then cool dont want to shock the area and often if it gets too cold the blood rushes back to the area making it nice and hot and itchy once more, dry off with a cool hairdryer go commando for the time being - skirts are a must if so! No creams or nice smellies. Do you have lumps in your groins?  - if there is an infection in the area the lymph nodes will be hard and can be felt- just like when you have a sore throat and the nodes in tyour neck are swollen and uncomfortable

      Depending on your age and sexual activity you may find the Bartolin gland is being annoying - it is just inside the opening to the vagina- again a hard uncomfortable lump - not associated with LS as a norm

      Are you softening the area as Dr Goldstein suggests with a warm bath of at least 20 mins i think he said and then  massage in the ointment for a minute and a half or 90 seconds, leave for a while then moisturiser, i use lashings of Diprobase which acts as a barrier to urine too. Keep the urine blood and faecal matter off the skin

      I was told it may be up to six weeks for a flare up to be dampened by the  steroid ointment, so patience and NO STRESS- Good Luck

      Sue

      ps Chrisy is right look to see what is happening a big shaving mirror and a good light needed

  • Posted

    Thank you for your reply Suedm and for all your advice. Really makes me feel a bit better that I'm not alone. I am seeing a dermotologist this Friday - one who specializes in vulvars!! I hope that this will be fruitful. I have had a quick look down below but am a bit scared of what I will find or not find! Will report back if the consultant has anything interesting to say which also might help other members. 
    • Posted

      There are quite a lot of us sadly, so you are not alone. But just a thought, nothing is changed by knowing what is going on. Knowledge is power...always. So don't be afraid to look or to find out. If you know ' your enemy' there is more chance to overcome the problem, any problem. 

      Lucky you finding a vuval,expert there are not too many around I believe.

      write down ALL your worries queries and issues so you can ask them when you visit. Try and memorise them , count the number and mentally tick them off as you ask, Medics don't like reams of paper and sometimes can get testy when confronted by huge lists If yours is friendly then even luckier you

      best wishes

      sue

  • Posted

    I'll be interested to hear what the dermatologists thinks. The only time I've had that kind of swelling was with an abscess right over my clitoris. So, it was a bacterial infection, curable with antibiotics.
  • Posted

    Hi Kate,

    What you're describing sounds like what happened to me - the globetasol just didn't seem to cut it anymore.  I'm on anti-biotics since a short week and the LS seems under control for now.  I see anti-biotics as the last resource though.  But I had the feeling that I was 'standing with my back against the wall'.  Also, Kelly and Marey advised a concoction with turmeric, which probably was of help with the swelling. My bathroom visits are lengthy, but I am able to empty my blatter again. (may have improved because of the swelling going down)   

    • Posted

      Glad to hear that you are doing better, Hanny.  --Suzanne
    • Posted

      So glad the pee is flowing, Hanny! Are you back from your camping trip?
    • Posted

      Up till yesterday I was reasonably okay.  This morning ..... drip, drip.  This afternoon I have a doctor's appointment again and we'll discuss placing a catheter.  Anyone any thoughts on this 'stage of the game'? Or personal experiences? 
    • Posted

      Oh, so sorry Hanny!  I wish you well with figuring this out with your doctor and getting some help.  Cateters are not fun, but you have to pee!  Please let us know what is happening for you when you can update us!  --Suzanne
    • Posted

      Well, that was a ray of hope snuffed out overnight. But I always think the best decisions are the ones that make themselves. You'll be our catheter pioneer. If you start a thread about it like 'Lichen Sclerosus catheter', other women at that stage will find it by Googling, I bet they're out there.
    • Posted

      Suzanne and Morrell,  I had an interesting afternoon...

      Trying a catheter with the good guidance of a nurse, first one was too big, a smaller/thinner one could go into the pinhole that's now left, but could not go any further because the pin hole does not line up with the urethra.  Surgery will be the only option.  But I don't know what that will look like yet.  Another doctor appointment to go.  On the advise of the specialist -  meanwhile use Premarin to make the skin more flexible.  (conservative thought, but what option is left?)  I'll do that for now.  

    • Posted

      Thanks for letting us know what happened, Hanny. I did wonder where the catheter would go after it penetrated the closed labia. I've spent enough time eye-to-eye with my urethra now that I can say confidently I would not like to insert anything in it, especially blind. We really don't need regular scrapes!

      Now that this option has been unsuccessful, I'll say what my sister always tells my mother who has intersticial cystitis and would love a permanent catheter (or a bag!). My sister's a registered nurse and reminds us that any hardware that penetrates the body is a pathway for bacteria.

      All my snooping on the internet since my diagnosis indicates that your situation often requires surgery. They generally say this in the context of discouraging the idea of surgery for sexual purposes – they seem to agree that the only good reason to do surgery is if urination has become impossible.

      So, again, the decision has made itself – nothing to second-guess.

      We're here for you.

    • Posted

      Hanny, thanks for letting us know.  My thoughts and best wishes are with you.  I am hopeful that you will get some good relief with the surgery.  That must be daunting to be planning, but it does sound like the only good solution at this point.  I hope that you do not have to wait too long.  Catheters are, as Morrell also indicated, a potential source of infections and need to be used only as long as necessary.  Surgery offers a longer term answer,  All our best to you.  Please keep us posted.  --Suzanne
    • Posted

      The office of the gyno already called me today, at a moment that I was not yet home, unfortunately.  Tomorrow morning first thing I will phone them.  The appointment will be on Thursday AM.  Will know more after that.

      And Morrell - my questioning was already the same.  (pin hole probably not lined up) But then again, I'm not a trained nurse or anything, so they may know more than I do.  At least that was my reasoning prior to the visit to the clinic. Kid you not - the nurse didn't know what LS was.  So have done my best to inform them.  There was also a nurse in training - I grabbed my chances and told her all I could tell at that moment.  And encouraged her to study the subject some more.  However, they did their utmost, doing the best they could.  I'm not talking them down.  Just telling you that there is a lot of educating to do regarding LS.  

      Thanks for all your support, everybody.  

       

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