LS as well as another infection? Feeling desperate, would love your advice!

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Hi ladies, hoping for your advice smile

I was diagnosed with LS 3 years ago (I'm 32) and although it's never gone away completely I have been managing it with clob and epaderm.

HOWEVER, for the last 9-12 months it's got much worse. The outer skin has turned bright red and I have unbearable itching inside and outside (not just on the areas with LS). It looks like a rash with some red spots and ingrown hairs (yuk!)

I'm wondering if I have ANOTHER infection as well as the LS, something fungal or bacterial (thrush? strep B? staph?). Has anyone else had a bacterial or fungal infection as well as the LS? 

If yes, how did you treat it? None of my test results have picked up anything and I've tried thrush treatment (fluconazole) with no success. Any advice about treatments or tests to ask for would be welcome as I have been back and forwards to the Dr and nothing is helping! Thank you!

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  • Posted

    Hi

    I was diagnosed with LS two years ago and had a similar problem a few months ago which is very similar to what you have described - I had redness and soreness on my inner thighs and outer vagina which spread considerably and became quite distressing. My doctor advised me that it was probably a 'flare up' of the LS and to use the clobetasol (Dermovate) on the affected area. I didn't know this at the time, but this was the worst thing I could have done and it made the condition on my inner thighs even worse - I was totally misdiagnosed by my doctor. It wasn't until I saw my dermatologist at the hospital a couple of weeks later that I was told to stop using the clobetasol immediately and I was diagnosed with steroid induced rosacea on my inner thighs - also known as steroid dermatitis. I obviously queried this as I thought rosacea only appeared on your face - apparently not. It can appear anywhere and is the result of the overuse of a steroid ointment or cream. My dermatologist suggested that the clobetasol, after application to the vaginal area, had started to migrate onto other areas of normal healthy skin. I wasn't using any form of barrier cream after each application of the clobetasol which I should have been applying to stop the steroid from spreading onto other areas of my skin (e.g. area just outside of my vagina, inner thighs etc). If I had, I would not have had the redness, the soreness and the itchy red spots - but I was never, ever, advised to protect my healthy skin like this by my doctor when I first diagnosed. I was subsequently prescribed strong antibiotics by my dermatologist for a month and I have not been able to use clobetasol at all. I was given Lidocane and Aveeno moisturiser to use instead to help with the itching and sores. A month down the line - the soreness and redness have completely disappeared and my dermatologist has allowed me to go back to using the clobetasol twice a week - making sure I cover all areas around the steroid application with a simple application of vaseline - making sure I cover all areas where the steroid may migrate and come into contact with healthy skin - apparently the vaseline will prevent any 'creeping' of the clobetasol and prevent absorption onto healthy skin. So far, so good. But why did my doctor not know this??? To be told to apply the clobetasol on what was in effect healthy skin which had already been badly affected by the steroid ointment, just beggars belief. I did go back to my doctor and I got an apology and she explained 'we don't see a lot of this' .....

    Hope this helps - redness and soreness on your inner thighs or on any areas of the vagina which you have not been applying the clob to does not necessarily mean it is an LS flare up - it could be that the clobetasol has migrated onto healthy skin and is causing a severe reaction because it is adversely reacting to the strength of the steroid ointment - so please don't take just one medical opinion, seek further advice and get the right treatment. My dermatologist is a specialist in LS and thank God she knew what to do because my doctor certainly didn't. I had to ask my doctor to be referred to a dermatologist that specialised in LS as I had no confidence in my doctor's knowledge of LS - I did this over over a year ago and I am now seen by the dermatologist every 6 months at my local hospital. God knows what state I would be in now if I hadn't been given the right advice.

     

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    • Posted

      Hi Susie, thanks so much for taking the time to reply, its helpful to know I'm not alone (although glad you are feeling better). Thanks for the info, it's good to have a suggestion I can take to the doc - although my next appointment with the specialist isn't for a few months sad Perhaps I can try the Vaseline in the meantime smile Thanks again for your help

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    • Posted

      Thank you for this posting. I am so happy that I was able to get this information. I have been wondering why my thighs are so red, itchy and sore, almost like sunburn. I have LS for 16 years or more. This is the first time that this redness has happened outside of the vagina and anal area. I used Clobetsol thinking it might help. I actually got a lot worse. Then I started using Dovonex. No help. Been using baking soda sitz baths and when dried off, cornstarch. But that doesn't work for my legs. Going to lay off the clob. now after reading your post. I have NB a gynecologist but have to wait a year for appt. My Dermatologist doesn't treat below the waist. So I am left on my own with only help bring from this forum. Thank God I was able to read your post.

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    • Posted

      Thank you thank you for posting this, I had no idea about the steroid destroying the good skin, it explains all my symptoms! It feel like a burning sensation on my bottom and it has steadily been getting worse, nobody hoed told me to protect the good skin with any barrier cream but now it makes complete sense! This sight has saved my life thank you to everyone who shares!
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    • Posted

      Hi Susie, what antibiotics did you have (do you remember?) and was that to clear a bacterial infection as well as the Vaseline protecting your skin? I've tried switching to Vaseline instead of epaderm & using it before clob but no improvement so far so wondering if I need the antibiotics too? Thanks so much!

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    • Posted

      Hi

      I thnk it was tetracycline or oxytetracycline which I had to take 4 times a day for a month. The dermatologist explained I had a deep inflammation of the healthy tissue which is why I was told to stop using the clob completely for a month - but she gave me Lidocaine and Aveeno cream to use to help alleviate the continued itching and sores during this time. I am pretty certain it was the antibiotics which helped clear the problem though - so,yes, it was probably an infection and a deep inflammation of the skin due to the migration of the clob onto healthy skin. If you are not seeing any changes then I would certainly seek medical advice and ask if it could be steroid induced rosecea or steroid induced dermatitis. I think tetracycline is normally used for the treatment of severe rosecea and also to help with inflammatory disorders so I guess it makes sense I would be given this to treat my condition. It has certainly worked. I have no redness or soreness on my inner thighs or my vulva at all now - although you can still see the outline of how far the inflammation spread on my inner thighs but I have been told this will eventually fade. I don't think you should ever just stop using the clob - in fact I have read numerous reports that you should always use the clob for maintenance purposes forever because if lichen sclerosis is left untreated it could cause vuvlar cancer. I know the number of actual cases of vulvar cancer is very small but I don't want to be one of those statistics.  Im back to using the clob twice a week because I need to as I do suffer from the itching symptoms quite a bit..The clob does alleviate these symptoms and I don't imagine that I will ever come off the clob to be honest. Hopefully I will get it down to once a week and as long I am continually checked every 6 months then I think it is going to be manageable. Thankfully we always have this site for when we are worried and at least we can get some good advice from those who are actually going through it :-) Hope things improve for you soon and do go and see your doctor equipped with the information about the antibiotics as this may help you.

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    • Posted

      Thanks for reply Susie I completely understand what are saying but basically I have never been diagnosed with LS in my bottom (only in vulva, clitorus & perenuim) but when I went to my local dr about my bottom, as told by my specialist, he said he couldn't see anything but suggested I try using the steroid cream to see if it would make the scratchy, prickly feeling go away! I now know this was clearly coming from the steroid cream I had been using on my perenuim which had obviously migrated through sweat to the good skin in my bottom & the prickly feeling was the beginning of the good skin being damaged and burnt by the steroid cream! I have put up with this for 7 months thinking this going to be my life, to point I could bearly sit down and now having read your reply to someone else the other day just in about 4 days the soreness has nearly all gone as has the horrendous prickly feeling I was getting! So thank you for your post as I have been so down about it all and you have made me better! 

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    • Posted

      Thank you Susie that's so helpful, will suggest this at my next appointment smile yes still using the clob 2-3 times a week & twice daily epaderm but maybe adding the antibiotics would help as can't seem to get things under control! Have a good (and itch free!) week smile

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    • Posted

      Hi ladies, just wanted to come back to update & say thanks for all your advice. I got a 10 day course of antibiotics & have gone back to daily clob & things improved almost immediately. Feeling so so much better smile Thanks for sharing the info smile really helps to know there's somewhere we can talk about things & swap hints when nothing else is working!

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  • Posted

    Hi I'm so sorry, your having a bad time,

    I was diagnosed just before Christmas , but since the beginning

    Of Dec,I've been on 3 lots of antibiotics.

    I've had such a bad reaction to dermovate steroid ointment.

    I've just been able to start walking a little better today,

    I'm back with drs Tuesday.

    Thank goodness for all you lovely people,

    Other wise ....

    Well, things would be awful,

    My anus sounds just like yours,

    Dr told me everything I go to the toilet to wash, and use

    Vaseline,

    It's a little better, but bottom area so sore,

    Hope your feeling better very soon ,good luck xxx

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  • Posted

    Your story confirmed my suspician - a person can use too much of the steriod. 

    ?I would suggest that you look at "an experiment with Borax" at this forum.  First I used baking soda baths and rinses, next to regular steroid use. And applied coconut oil for lubrication.  Then the person who started the discussion on Borax caught my attention and I started with Borax. 

    ?It so happened that I now no longer use any of the steroid cream;  I have ever so gradually phased it out.  My LS is nicely under control. 

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    • Posted

      Is there a particular kind of borax? I have borax here that I use to control red ants in my garden and as cleaning powder for tub and tile. Is there one I can buy in a pharmacy?

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    • Posted

      During the day I use three pinches of Borax in my spray bottle and shake well to help dissolve.  Every other day I take a Borax bath (1/6 of a cup)

      ​Before going to bed I apply some coconut oil.  And when sporting I apply a small amount of coconut oil. 

      ​Meanwhile totally free from the need to use steroid ointment.

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    • Posted

      I was given the same advise to use clob...just about a pea size two times a week.  It didn't appear to help so after reading a treatment on this forum, I started to use Borax, in the US we call it 20 mule team,found in the detergent aisle.  It appears Canada has banned it because people were using it for their eyes.  It can be ordered through Amazon.  I have a small squrit bottle, put in hot water about 1/2 the way then about 1/4 of the borax then fill up bottle .  Make sure no lumps, then shake till disolved.  I use this after each trip to the bathroom, then apply a vasoline type cream can be found in the shelf in the drugstore, blue bottle.  I also use an estrogen cream two times a week.  I'm 79 and all the symptons have gone along with the fusing.  I was under consideration for surgery because I kept having bladder infections from the fusing.  Been doing this routine for abut 2 years now....off the clob and have been since the beginning.  .Good luck to everyone but have faith, try what works for you and take care it will get better.

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    • Posted

      I am 71 years old and battlin LS fpr 16 years.  I have the same problem with fusing and bladder infections.  I am encouraged by your posting.  What stopped the fusing in your opinion, was it the borax or the estrogen treatment?  Sounds good to me and I have everything here that I need except for the estrogen cream.  Thank you for this information. My gynecologist would rather not do surgery for the fusing because, he said, it only creates more scar tissue and fusing. I was beginning to feel that I would have to have it anyways.  I will try to get a doctor to prescribe estrogen cream for me.  So happy I read your post today.

       

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    • Posted

      I'm living in Canada Pat and borax is nicely available in the laudry detergent section of the supermarket.  It works wonders.  No more steroid needed.

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    • Posted

      My experience:  At first I tried the baking soda and that worked as well to reduce the fusing.  But the last part was nasty and then I started to use borax.  Now I'm totally "fusion free".  Everything turned back to almost normal and I no longer use any steroid ointment. (gradually phased out)

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    • Posted

      Dear pat, thank you for the encouraging words,

      Very positive,

      What have you taken for your bladder infection s,?

      It's lovely to here you are doing well,

      Kindest regards 😀

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    • Posted

      I have had such great results.  Hope you do too.  By the way I also DO NOT use clorine in my wash ans the local health food store I shop at has toilet tissue that is unbleached.  I find both the tricks help a lot.

       

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    • Posted

      I have been very lucky and have not had any recently.  Before that I usually was put n Cipro.  I now use unbleached toilet tissue and no clorine in the wash.  Thank you for your regards.  I sure hope you find the relief I have.
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    • Posted

      I have not used clob for over a year.  Happy to hear you have Borax availble, read some were unable to find it. 

       

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