LS, bladder infections and antibiotics

Thanks for your suggestion, AZM.  Yes, there are a number of people here who would agree with your experience that probiotics can help with UTI's.  Welcome--and please share your story if you would want because we'd like to hear from you!  --Suzanne

Hi Suzanne - thanks for the welcome! I am so very glad to have found a site where I can chat to others who literally "feel" the same way as I do. I was diagnosed with L.S. in July although I am sure I have had this "condition" for about 4 years. I had been to my G.P. several times coming home with the usual antibiotics for UTI and thrush - never ending cycle. Vaseline became my only friend. This lasted until july when I could bear it no longer! A visit to the gynae and a biopsy confirmed L.S. The journey since July has been hell - Cortisone 3 times a day until I could bear the burning pain no more - my gynae's advice " work out a regime that suits you"! Now I am trying a topical cortisone once a week ( clob not available in SA) and topical estrogen twice a week. So far so good. one week down - lots of vaseline every day in between! I am going to get back into the aqua aerobics class this week wearing a thick layer of vaseline. And that's my story!

So very glad to have found L.S. friends!

From a sunny Cape Town - have a sunshine day wherever you are.!

Hi AZM--so glad to hear that you are finding a regime that may be helpful to you.  Four years is a long time to have had this without a diagnosis! Are you using now a strong steroid cream or ointment that is the equivalent to the clobetasol?  Was it the 1% cream that you used before for three times a day?  I'm just curious what didn't work and what seems to now be helping. Sounds like the vaseline has been useful.  I hope that you have had a look around the site and seen the Goldstein lecture.  Lots of useful info here and lots of great people here, and while I'm sorry that you are joining our ranks, it's great to have you here. Hope you feel comfortable to chime in whenever you want!  All my best, Suzanne  

Thanks Suzanne - I feel better already knowing I can chime in somewhere! I have not seen the Goldstein lecture but will soon browse through the site.

Thanks again for caring. AZM

HI Suzanne I am using Dovobet which contains Calcipotriol 50 (something I can't make out)Betamethasone 0,5mg and Tocopherol 1% What that all means I have no idea! Gynae first prescribed a mixture of Advanten Bepanthen and Testosterone , but my skin could not tolerate that. I have read the lecture you advised and I am now totally confused - that clearly states no topical hormonal creams yet another site Living with LS - where a LS patient of 10 years has written, it clearly advocates min. cortisone and topical estrogen and testosterone creams -  the estrogen to repair the tissues and the testosterone to strengthen the tissues of the affected area - I don't know where I should go ! Perhaps the next stop a dermatologist as my gynae openly tells me that she has not dealt with many patients with LS. Totally dejected! AZM

Hi AZM,

Since it's late here in Oregon (USA), I'll be kind of brief for the moment, but I didn't want you to stay feeling dejected for another eight hours while I snooze!  Sorry that the lecture may have added some confusion. I also use estrogen cream (I use a bioidentical) and I think that it really helps, too.  I tried stopping because my doctor wondered whether all of the hormone creams applied locally to my vulva could be making the problem worse, but in fact, my LS got worse when I applied the cream on other parts of my body for a couple of months recently. The LS is now getting better and feeling better since resuming use on my vulva.  I am adding back the testosterone cream there again too, although that's not been found to be as helpful in the current research apparently as they thought it was for LS.  I just feel better and absorb it better on my vulva, and my blood tests showed my testoterone levels had dropped to a very low level when I moved application to other parts of my body.  Its hard for me to believe for those that tolerate estrogen that keeping those tissues healthy and not atrophied isn't helpful.  I think that it is and my experience going on and off it on the areas affected by LS supports my belief.  I believe that we have to trust ourselves a bit with all of this because doctors are still learning and figuring out what causes and helps LS.  There is still some speculation among the medical community and you'll see us as patients trying to figure it out, too.  

Regarding your cream, I am not familiar with the type you are prescribed--perhaps it's a type used in SA?  Wish that I could comment on it--perhaps there are others on this site who know more about this one than I do.  

You sound like you have been more optimistic recently so it's likely that you are on the right track.  I hope that you can keep listening to what your body needs. A lot of us are trying to track things like stress and diet (particularly sugar) to observe the effects on flairs of LS.  Have you noticed any patterns?  

Off to bed.  Hope to talk with you tomorrow!  --Suzanne

Hi AZM, I don't think you should worry too much. I looked your prescription up. The ointment you're on is at the top of the topical steroid potency start along with Clobetasol, so you've got the right stuff. I know the woman on 'Living with LS' swears by the estrogen cream, but that's really periferal. I can't use it – I seem to be sensitive to it, didn't do well on birth control pills way back when, either. I tend to think if we're diligent with the extra oily moisturizing and barriers (such as your vaseline) we'll be good.

Hi Morrell - you are a star for looking up the equivalent of clob for me. My concern is that the cortisone - even used once- is creating havoc . The "burn"  makes me quite tearful, but I am afraid to discard it totally!. There has been some improvement since I was diagnosed in July and I am wondering if quitting the cortisone is going to push me back to square one?. I wish I knew what I should be using - is it cortisone, oestrogen or just Vaseline and a healing ointment containing Zinc oxide. I really would appreciate your input or any one else's. advice.   Thanks for caring. AZM

AZM, as Dr. Goldstein said in the presentation linked in the "New to LS – Start Here" discussion it's not the clob it's how you use it: just because you have a racket doesn't mean you're a tennis champ. Clob is the main treatment. (Or one of half a dozen other ultra potent topical steroids). Everything else we do and talk about is supplementary. I've lost track of the other member who had the same problem as you recently and I asked her whether she was possibly using too much. I was diagnosed over a year ago and my 50 gram tube lasted a year. All that time I had no idea whether I was using too little or too much. Turns out the average use is 30 to 60 g. per year, so I was on track. A pea-sized glob goes a long way. I put 1/3 of that on three areas – around the anus, on my perineum and up front. I also divide Dr. G's 90 seconds in to three 30-second rubs.

You don't want to put Vaseline right on top of the clob because it will all melt and then get on healthy skin where you can expect it to burn because healthy skin isn't covered with a thick layer of dead cells like LS skin. Wait an hour to let the clob really sink in, then apply the Vaseline. Lots of women here use coconut oil. I doubt the Vaseline is burning, but you could try a different goop. Some swear by emu oil and some say it makes them smell like chicken fat. The main thing is to try to keep our urine off flared skin and keep it moist so the skin doesn't split.

Suzanne, I'm so glad to hear you're improving.

Morrell i have been using pea sized amount but I think you have a point - I have used all of it inside the vulva. The burning sensation does not occur immediately , but the next day. My gynae has given me so little guidance - I don't know whether the clob should be on the affected area in the vulva or the whole vulva . To be honest I don't even know which is the affected area. Souns stupid I know but I was just given the script and told to use it. May I be personal and ask how often you use the clob? I have come off 6 weeks use of 3 times a day ( a week ago) and have used it 3 tmes this week, Same burning result. I have been given no indication as to how many times a week I should use it - only "whatever you are comfortable with" Makes it difficult to know whereto Sorry to have to bleat out my whole saga but no one I know suffers from LS , so I have no local sounding board 

AZM, my motto is 'There's no such thing as too much information on our forum!'

Wow, three times a day is a lot! When I started, I used it maybe every day, but only for a week. I tapered – as prescribed – over a three month period. I've never used it twice in one day. Since the first three months I've been using it twice a week. More isn't better.

If you're not having a bad flare (and if you can't see which areas to apply the cream to, it doesn't sound like you are), why not cut way back to a tiny bit on the place where your flare is usually worst, twice a week?

You mentioned aqua arerobics. We had a discussion about chlorinated swimming water a while back. Wilma in nothern Australia has our sympathy – cooling in the pool is life-or-death for her. I sure wouldn't do it unless I were in complete remission, which I thought I was a few weeks ago and then one small emotional upset and bang, the crack was back.

When I think I might be growing yeast, I slosh a teaspoon of cold yogurt on there. It cools the burning. Aloe vera gel is good, too. Obviously not around the same time of day as you apply the clob. I do that before bed, but with time to put the oily stuff on later.

You have given me hope today! I am going to do the clob twice a week and cut out the oestrogen ointment till I see my gynae in 6 months time. On your recommendation I will delay the aqua aerobics till later. Thanks for your help - your are a shining star!

Does anyone use Hydromol ointment l have been prescribed it to use when not using the clob , but now l have a bad flare up my docter said to apply it over the clob listerning to todays discussion l think l,m going wrong l have only waited about 10 mins before applying it , thanks for this new imformation l will try it after an hour.

That's the idea, Winifred.

Thanks, Morrell!

Hi AZM--I had burning for a while with the steroid cream, it was somewhat better with the ointment, and improved quite a bit as my flare subsided over the weeks.  I believe that the traditional advice for how often to use the steroid is daily for a month, then every other day for a month, then twice weekly.  Personally, it took a little longer than a month for mine to begin to improve, so I continued it daily for a couple of months.  I think that the twice weekly is the maintenance dose to use when the flare has subsided.  I use the ointment now through-out my inner vulva.  I was using it only on a couple of white and reddened areas, but then noticed that the LS had spread through-out  the area inside the labia minora from my clitorus to my intoitus--I worry that the spread occurred because I was too conservative with trying to keep it in select spots and missed the whole vulnerable area. Now I'm trying to stop my clitorus from soreness and fusing.  I'm concerned about backing off too soon on the steroid, so may continue to use it a little more frequently than two times per week.  I don't want permanent changes.  One important note--I think that we need to be diligent about not depending solely on the steroid and other topicals and make sure that we are addressing our diets, lifestyles, and stress levels, too.  There is some reason that our bodies are imbalanced and LS starts from within the body's deeper layers of skin--so nourishing ourselves undoubtedly is a good long-term goal.  --Suzanne  

Hi Suzanne I will persevere with the Dovobet on a twice a week basis My stress levels were pretty high today with a nasty flare up so I am going to do my best to get a good nights sleep and re look at my diet in the morning Thanks so much for your concern AZM

Welcome AZM. I too am a aqua exercise fan and my bathers arived today in the mail. Going to chance the water with lots of barrier ointment. Its in the mid thirties already and not even summer yet. 

Thanks for the welcome - can't tell you how much I value inmput from all fellow LS "buddies'! Enjoyeery moment of the aqua - it is my very best. Have been doing it for 15 years and never tire of it. Slpash for me , girl!!!!