Diagnosed with LS for one year, suffering with fissure. Clobetisol and lotrisone not helpful. Help

Hello Jess,

I am confused with the steroid ointments, I develop redness and inflammation which is exactly what they should eliminate.

I have been seeing a gynecologist for months, so now it's off to a dermatologist.

Can you recommend a flare fix?

Hello,

I am sorry to hear about your constant soreness. Unfortunately, I don't have any good solution. My problems can keep quite calm and then suddenly flare up without any obvious cause. Steroids never worked for me. After a weeks use, I am always much sorer, redder and more sensitive and then I give up. The doctors try to persuade me to go on to prevent cancer but it is too uncomfortable. Vaseline or babyzinkpaste smoothens but does not really improve the condition. I know that exercise can be difficult but I try to keep it up, since it makes me think about something else. Having a healthy body increases my self confidence and I believe being healthy might facilitate to keep things calm. But some days it is hard. Good luck! I hope you will find something that works for you. Try to continue with activities that make you happy as far as possible.

hello..my understanding is that the steroid treatment is for the rest of our lives.  The frequency lessens, from twice a day, to once a day, to every other day..to once a week...but it never ends.   My LS specialist took me of Clobetasol and put me on a slightly weaker steroid:  Triamcinolone.  I am now using it about every 5 or 6 days.  I am overdue for an appt. with her, tho.  But I am having no problems.  I go "comando" 100% of the time (no one knows, right?)...only wear skirts...no jeans, etc.  But then I don't exercise the way you and Jess do...so I don't see how you can ride a bike or walk or run without some sort of pants....most of us on this forum use emu oil or coconut oil all the time...after every bathroom visit.  Lots use a couple of pinches of baking soda is a spray bottle of water after every bathroom visit, dry, then use one of the oils.  Have you tried using an oil yet?  It helps very much.

Thank you for the comment, I don't feel so alone.

My tissues are so inflammed and red, they are bleeding. Any quick fix?

It sounds like it's all the sweat. Rinse after exercising with a basin of water and a tablespoon of baking soda. Pat dry thoroughly and then put lots of thick oil on, even good old Vaseline.

Elizabeth, I was diagnosed 2 months ago. My gyn found white patches at my yearly check up.  Like most ladies, I too have had it for awhile bcause I would itch off and on for years.  My labia minor is fused and clitoris is fused over.  So I know I have had it for awhile.  So two months ago my gyn prescribed Clob.  I got much worse with the redness, raw skin , hurt like you described.  I had sores just inside my vagina and still do. I was raw and hurt from one end to the other (up the crack of my bottom). I read on this forum that along with LS comes yeast infection.  Some women say that they use the yeast cream on the vulva and that helps the LS.  So I quit the Clob and started using yeast cream that I got over the counter.  I used lots of Emu oil with the cream.  After two weeks I am still red, itch some and like I said I still have the sore areas.  Yesterday after working out in yard and doing some mild exercise I had problems with the redness again and itching.  But I used back the yeast cream and used my emui oil and I am better today. I am so much better than two weeks ago.  I have just started today back on the Clob.  But I am going to use three times per week instead of two times daily or once daily like I had been doing.  I read that rubbing in a moisturizer in before you rub the clob helps.  So I am going to try that.  Bottom line for me is I don't know what is the LS, yeast infection or steroid reaction or all three.  As a quick fix I would try the yeast cream and oil.  I do hope you feel better soon, and I understand the discomfort, and I was scared..not so much now though because so many ladies here have hielped me realize it will come and go ,and we have to experiment to see what works.  Best wishes.  

I am not in Great Britain but when reading through the comments, I would say Desitin paste is a good choice for fast relief. I use something similar at home. It should smoothen the area and protect it from moist. Try a thick layer before exercise.

Hi Elizabeth Yes I went between both Gynecologist and Dermalogist. I saw 2 of each in my region and in a bigger region. I was getting very confused as they all different opinions and approaches. I do think it's useful to take a combined approach.  At one stage I was trying all sorts of lotions and potions that others had used to try and settle my flare down and all I seem to do was make things worse.  I read a post from a lady who said to STOP using everything down there and just get the area back to neutral apart from the Clob so that's what I did and it helped!  She advised no soaps or washes just warm clean water and to continue this for at least 4 weeks. One of the 3 specialists I saw told me the same so I followed that path and for me it was helpful. As you will read on forums everyone is so different and different things work and some people get good relief from creams.  I have changed my style of dress and where ever possible wear skirts and no underwear (I do carry them in my bag in case I have an accident!). I also have a small coke bottle that molds nicely in that area that I keep in the freezer and when in need wrap in a soft cloth (moisture absorbent) and freeze the area down for 15 minutes - this helps me a lot with the soreness. I am lucky to work in an office that is private with a small fridge/freezer so if needed can apply this at work and no one would know. I work with 3 other ladies who I shared my problem with and they are very sympathic and keep a watch out for me for visitors so I can drop the water bottle routine under the desk if need be - what you do to survive the day is amazing really.  

Do look at the Dr Goldstein's webinar- Many aspects of this annoying painful and hhorrid condition will be explained including the rationalle for using the Clobetasol. Make sure you protect your skin from bodily fluids - ALL of them - reapply after each trip to the loo. Sadly the steroid can sting and feel  painful at first, one has to persevere. but do make sure that your skin is REALY clean before applying the ointments wait 20 mins before  applying the moisturiser/ and or barrier  cream. There are several old threads that will help  AND of course do check out the New to LS on this site Good luck

Try setting in a luke warm sitz bath or bath tub with corn starch. It helps me more then the baking soda. Soda makes me worse. I've had LS for 6 yrs. .I'm 48 yrs old..And over use of the seriods, mainly clobetasol destroyed part of the clitoris. I'm seeing a new Dr and he said that's what happened from over using the clobetasol. So be careful. The only exercise I was able to do was in my hot tub or pool. Because I've got Fibromyalgia, had 3 back k surgeries abd 2 knee surgeries. Now I'm having flares ups, now with the chemicals. It's disappointing not be able to use that for exercise anymore.

Many thanks Norma, it's good advice!

Thumbs up elizabeth.

I'm going to try the sea salt. .Thanks

It works for me pammy. I did have some irritation when I first discovered I had LS. My consultant gyneocologist doesn't start any treatment until after a biopsy and results are done so I began soaking by sitting in seasalt and epsom salt. By the time the biopsy confirmed LS I didn't have any irritation so that now I have the steroid ointment I don't actually think I need it. I still do the soaks but changed it to seasalt to sit in every other day. I am using Cornish sea salt but I have ordered from Amazon some Dead sea, sea salt because it is higher in electrolyte minerals. Hope it works for you.

Will the Epsom salt I tried once it seemed to irritate me but it had some uliptus scent added so that could have been the problem.

Can't say it was a problem for me pammy but I didn't use Epsom salt soaks to sit in for long. I prefer sea salt for sitting in and Epsom salt for foot soaks.

I don't add anything else I just keep it simple.

I use a portable bidet that fits on a standard loo.

I disolve 1 heaped tablespoon of sea salt in approx. 5 pints of heated water and that fills the bidet. Grab something to read and I'm good for about 20 mins.

I think my problem is I use to much of the salt..I'm going to try the dead sea salts soon. I'll let you know what happens. I know everyone is different so are bodys react different to different things..

Yeah, I'll be interested to know how you go on so let us know if you have any success with the sea salt soaks.

Baking soda is a good acid neutralizer but it may be a bit too drying for your skin especially if your skin is sensitive or you have been using too much and too often.

Good thing about sea salt is it's ability to hold moisture in skin so dryed out skin which causes soreness shouldn't be a problem.

Remember you are made up of salty stuff- Tears blood mucous etc are  all salty. The level of normal saline- as this level of saltiness is  termed  is in "old money"  1 teaspoon of salt to a pint of water. The salt should not sting at all if you have the right dilution

Good luck

I will remember this. Thank you

I bought the sea salt yesterday. But I'm going to wait it I've tried the salt water hot tub out a few more time. I went yesterday and they told me I was welcome to use it out for a week or 2 if I wanted. I thought it best not to do to many things at once. I need to know what irritates me and not to be using too many products or things at the same time, way I can narrow it down to the one item.

Is the hot tub sea salt pammy? It should be very relaxing. I've been to the local spa which has a salt steam room, that seemed a big strange at first but  it's ok once one adapts to it. I recieved my Dead sea salt today and I soaked for 20mins. this afternoon. It has a slightly stickier feel than Cornish sea salt but that will be the higher mineral content. It's very refreshing. Hope you sort out what's best for you and you are right to keep it simple as you don't want to complicate things by over doing it. 

Just spotted,you did say sea salt water hot tub. Sounds great pammy, I could fancy that myself.

Will it's a salt water hot tub system. They've been on the market now for 4 yrs. I didn't know they had them. Tell I started having problems with major flare ups. thought it was from the chemicals in my hot tub. Did some research on line found the salt water hot tubs. I called our hot tub dealers. They have some hot tubs set up in private rooms so you can come in and try them out. They said they had a salt water tub set also in a private room. And I was welcome to use it anytime i wanted and as much as I wanted to. So I could see if it would take care of my problem so I'm taking advantage of a good situation and I'm going to go again today, this is day two and I'm going to keep it up for at least 2 weeks. To see if this will help as I use my hot tub for exercise because I have fibromyalgia on top of the other health issues. I also purchase sea salt from the Dead Sea. I'm going to use it after my trial run in the salt hot tubs don't want to use both in case I flare up, because then I won't know what's bothering me. I'll let everyone know what my results are..