Steroids not working

Posted , 3 users are following.

I’ve been battling with skin problems on my vulva for over 2 yrs. Initially, I had lesions for no apparent reason. I was first referred to a specialist late 22 and we haven’t been sure if it was eczema or Lichen Sclerosis. The condition, typically, seemed to reduce whenever I saw someone so we had to rely on bad photos of when the condition was bad. I did an initial treatment of Clobetasol for a month /two weeks which seemed to reduce symptoms for about a month. Then the problems returned. I tried the twice a week treatment but it didn’t seem to help. I tried applying and inserting oestrogen cream which didn’t seem to do much either. So I stopped. When I was told to try it again but insert the cream deeper I got awful thrush so didn’t continue.

I thought I’d got the problem under control over the summer but over the past few months the condition has got much worse and white patches have appeared. My health care providers are changing so I’ve not been able to see a specialist since April. I may have to wait till Dec now which is really frustrating. So I’ve self-diagnosed that I have LS. I was told by 1 specialist that I shouldn’t have been prescribed Clobetasol initially and was prescribed mometasone instead. Over the months the steroid treatment seemed to loose effectiveness. It would get rid of it for a while (say a week ) & then it would get worse again. So I recently thought I’d try the Clobetasol again for 2 weeks/a month to knock it on its head. It reduced the symptoms quite quickly after 3-4 days but then symptoms started to flare up again whilst I was still applying the Clobetasol. I’ve been trying to bath most nights, for 15-20 mins, before applying the S cream (at night) and checked with my GP that my moisturiser (Aveno Cream) should be applied before the steroid cream. However I’m 10 days in and symptoms are persisting. I’ve been trying to research possible reasons and have read that you should wait 10-30mins after applying moisturiser before applying the steroid cream. But surely the softness of the skin (as a result of bathing) dries out in this time, making the need to bath before applying the steroid cream redundant? I’m wondering if, in applying the steroid cream directly after the moisturiser that I’m diluting the efficacy of the steroid cream? I also started with the oestrogen cream again last night and no thrush as yet so hoping this will help. I’ve also read that if the skin starts getting red after using steroid cream to stop it? I’m really confused as to whether I’m making the problem worse by continuing with the steroid cream everyday. I even applied some S cream in the morning as well as at night the past 2 days as my GP said it was ok to apply twice a day. A white patch appeared last night and then was gone first thing album returned after shower! Again I’m not sure if applying twice a day is still ok if I start doing this mid way through a ‘once a day’ treatment. I’m just not sure why the symptoms, which initially seemed reduced after 5-6 days are now returning… I’m applying Aveno whenever I go to the toilet, wiping with it (after initial usual wiping) and applying it to all areas of the vulva, making sure to alternate fingers applying the cream in case I spread it unnecessarily. It’s so frustrating to not feel like I’ve got this under control and can’t seem to find patterns. Should I just continue with the Clobetasol once a day for a month even if the symptoms persist? Also does bathing not dry the skin? I put Aveno in the water but I’m not sure it does much

1 like, 3 replies

3 Replies

  • Posted

    after reading your descriptions of treatment it certainly sounds like a huge frustrating problem .

    not having proper diagnosis and treatment . i wonder if a sample can be taken and sent to a lab could help you with a definite diagnosis ? this may elevate the not knowing exactly what it is and also proceed

    with a better plan for treatment.

    • Posted

      thanks Barbara.

      im really reluctant to get a biopsy if its LS as ive heard that they can be hard to heal if u have it and that LS prospers on scar tissue. The dermatologist i saw said they usually diagnose LS through visual examination. im pretty sure that this is what it is, it ticks all the criteria. ive just not had it as pronounced before when ive seen them.

    • Posted

      Dear Anna, I think you have a wise dermatologist. The danger is that if you see somebody else, they will have a different opinion re biopsy, and try to spring one on you, possibly even telling you your past care has been negligent (because you were not biopsied). If I were you, I would definitely not do it: please see my other recent posts in this forum. Also, I can attest that personally I had a rough time with redness, etc. from using clobetasol (dermovate) and scarcely fared better with mometasone. I have used betamethasone (betnovate or lotriderm) and clobetasone (trimovate) with more success, but both are slightly less potent. Trimovate also contains an anitbacterial and antifungal, as any steroid locally tanks your immune response. Another reason not to biopsy, as microbes love to infect wounds. I feel like out of common courtesy, I have to tag every message with the fact that I am male, so obviously I can't fully identify with what you are going through, but I imagine it is somewhat similar to my past experiences with this disease. It sounds like LS to me, but I'm not a medical doctor.

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