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Help! Flare-ups make it too painful to apply cream...

Posted , 9 users are following.

valgirl
valgirl

Hi. I am thrilled to find that I'm not alone with this condition, and hope to find some support and advice! I was diagnosed with LS three years ago, and told very little at the time. I came in suspecting a yeast infection, and had never heard of LS. The OBGYN's PA took one look and knew what I had, then took a biopsy to confirm and check for cancer. No cancer, thank God. She gave me a prescription for Clobetasol, and told me to use it twice daily for a week, and then use regular (cooking) shortening in between times when I needed to use the Clobetasol. For nearly 20 years, I experienced severe anal itching and my family physician never once mentioned any possibility of anything other than hemmorroids, and just gave me a low dose anti itch cream to use (which rarely helped). When I was diagnosed with LS, she told me it was most likely LS that had plagued me all those years, and now it was evident. I get flare-ups a couple times a month that last for nearly a week, and am now in the middle of one that has me so sore, I can't even bear to apply the cream. I've been using the shortening because it coats the area so well and makes it less painful to move. The sores are horribly tender and the Clobetasol burns like a son-of-a-gun to apply. Does anypne else have this problem?? And also, I've heard that Desitin is really good for the sores, but should I be using something for the soreness till it clears up, or will the Clobetasol help it to clear up?  I cringe at the thought of applying ANYTHING when it nearly brings me to tears to even touch myself, but the shortening helps. I can feel a couple little bumps, and that is where the tenderness mostly is. 

0 likes, 21 replies

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  • marey
    marey valgirl

    Posted

    shortening is new one! would that be lard or some particular animal fat...eg goose?  glad you find it helpful....coconut oil is also helpful during flare ups and extra virgin olive oil in a pretty jar in the fridge door is handy for in between times. 

    how are your iodine levels?

  • janette25
    janette25 valgirl

    Posted

    Hello Valgirl 

    i am in U K so medicine used for LS is different  but I attend a gyneocological lady every four months and she has given me some good advice that has worked for me 

    I have to wash wish Double Base Gel only front and back  wear no underwear only wash twice daily  and for any flare ups use Eumovate 

    only use white toilet paper do t use softener in washing machine use only good quality soapowder   In UK it's Fairy Or Persil 

    i have found all these work for me 

    I like you used to get bad flare ups and I then realized my GP knew nothing about LS so I,paid to go to the wish clinic which deals with all sexual diseases and the doctor there put me onto this lovely gyneocologist 

    I also have vitiligo under active thyroid  which I believe are auto immune  as is L S 

    i find the Double base Gel excellent 

    and after going to toilet I wipe gently with this also 

    I hope some of this is useful to you 

    Janette

     

  • ChrissieM
    ChrissieM valgirl

    Posted

    I wouldn't use Fairy or Persil, which are detergents, I use liquid soap flakes which you can get from some supermarkets. I get it from Waitrose.
  • Morrell1951
    Morrell1951 valgirl

    Posted

    Valgirl, that does sound bad. Glad you came here. A number of the women on this forum have said that the base material of generic Clobetasol cream is irritating to them. Dr. Andrew Goldstein (there's a thread on here with a link to his video presentation) says the ointment version works better by penetrating more deeply. My pharmacist was willing to give me the brand name (Dermovate) in the ointment. I had to dispose of a new tube of cream, but what's $25 spread over a whole year?

    My gynae said to be careful using the ointment, because it melts so well you don't want it dripping over onto perfectly good skin.

  • hanny32508
    hanny32508 valgirl

    Posted

    Hi Valgirl,

    Happy to see you found this group.  Very good thoughts on LS you'll find here and on various aspects of LS. 

    Did anyone already mention to watch your sugar intake?  For some of us this is a big factor in keeping LS down and under control. 

    I have had  to experiment with soothing the soreness - one time it is the Emu oil that brings relieve, another time it is the coco nut oil.  Sitting in an apple cider vinegar bath has helped me too.  A bit of trial and error, I'm sorry to say. 

    As you may have read already - the globetasol is a must.  It's the only way LS can be kept at bay. 

    Keep writing us how you are doing, will you.  We are all helped by each other's experiences.

    Take care.

    Hanny.

    • Morrell1951
      Morrell1951 hanny32508

      Posted

      Hanny's on the mark, Valgirl. I've recently cut way back on sugar. That worked so well (I could tell by my 'ring of fire' the day after a big dessert) that now I've admitted that coffee was bad for my skin on the way out. No mysterious maybe-allergy here, it's just that coffee relaxed my bowels and emptied them within minutes of a cup – this stuff is really caustic! So, my ring of fire has very quickly become normal skin.

      Looking back at the terrible flare-up a year ago that got me diagnosed (I had a huge abcess, a widely painful infection) may have coincided with nightly slabs of chocolate, daily ice cream bars and lake swimming.

      We're not suggesting that any of these things are the cause of LS, nor is abstaining from them the cure. But we sure don't need to do things that make it worse.

  • carmarie
    carmarie valgirl

    Posted

    I am still using the steroid cream until everything calms down a bit more. But i also find E45 is good for moisturising. I will try soap flakes for washing as suggested by someone. I just wash my pants in a hot wash no detergent and they come out clean enough. Hope this helps.
  • ChrissieM
    ChrissieM valgirl

    Posted

    I can't use E45 as I seem to be allergic to lanolin - it was trying to use that that gave me the very bad reaction that finally made me go to the doctor's 4 years ago, and subsequently being referred to the local women's hospital gynae dept. Cetra ben has been the magic formula for me as a daily emollient cream.
  • suedm
    suedm valgirl

    Posted

    Hi Val Girl If your sore areas are reallly inflamed and skin coming off  then I too found Clobetasol stung a bit- but in the long run it did more good. Try and keep urine away from your vulva- why not try vaseline rather than shortening - it is a better barrier - I would suggest. Dab not wipe after a wee - do not strain when having your bowel function. Some have found a spray of water after a wee helps to clean the area. I have found that stress is THE biggest problem in causing and continuing a flare up. If you itch or are sore try rubbing you arm - or leg or somewhere OTHER than your undercarriage - but THINK you are soothing it - it really can help - not always but fairly often.

    It sounds as if you are in the US - where ointments and medications differ  from the UK.

    Keep the area cool if possible, as others have said  go without underwear and wear a skirt- long enough  not to embarrass you should it become windy

    Cooling the area when it is inflamed seems to be sensible - so spray with  cool water - legs akimbo - in private- in front of a fan to dry  - not a pretty sight but spiders don't talk! Then apply your barrier ointment.

    Do watch the Andrew Goldstein item, he explains a lot some in clinical terms but the gist is understandable to non clinicians,

    No one has mentioned menstral flow - blood is extrememely excoriating on the skin( burning) so try and keep the area free from blood contamination - difficult if you have a change in structure and cannot wear tampons- MORE barrier ointment needed.

    You have had a tough time, it WILL pass, pecker up 

    Take care SueDM

    • suzanne00
      suzanne00 suedm

      Posted

      Thanks, Sue!  Great overview and very helpful to me, too!  

      One lingering question that I have had is that I want to use petroleum jelly but I worry that it's not natural (petroleum derived).  Is anyone else concerned with this at all or am I being overly sensitive about the chemical issue?  --Suzanne

    • Morrell1951
      Morrell1951 suzanne00

      Posted

      I was concerned about Vaseline, but I looked it up and it's been proven safe for many years and is the base of many medical moisturisers. So now I have a tub in the bathroom and use a fingerful before 'going'. I still like my vegetable oil and beeswax base ointment and cream for general slathering.
  • suedm
    suedm valgirl

    Posted

    Another thought - No soap - use an aqueous ointment to wash. a soak in the bath to remove all products from the skin

    SueDM 

  • marey
    marey valgirl

    Posted

    Dear val, 

    Further to your question about creams....I remember desitin from my visit to the states ...its equivalent to our zinc and castor oil cream here in uk...sudacreme. It is especially indicated as helpful since it forms a water barrier...helping nappy rash too.

    You might prefer it to petroleum jelly as well, Suzanne, maybe?

    Plus the zinc is beneficial. Don't know if it has any nasties in? Would be interested to hear. Found it to be ab fab to keep my daugter's btm dry all those years ago!

    • suzanne00
      suzanne00 marey

      Posted

      I hear that desitin has lanolin in it (?) and I'm allergic to that, unfortunately!
    • marey
      marey suzanne00

      Posted

      oh what a shame...

      not a very helpful suggestion then...unless there is some other zinc cream/oil/ointment? some have used calendula for example.  I found it helpful for burns in the past if that's a possibilty for you?

    • marey
      marey suzanne00

      Posted

      welcome...hope it helps.

      quitting grains is what dampened the fire for me...now i'm addressing my thyroid...but you've already done that...so what is being conveyed to you ...what is this signal ?

    • suzanne00
      suzanne00 marey

      Posted

      Interestingly, I've finally figured out that the reason my two 10 year old cats (abby/siamese sisters) have been throwing up almost daily for years is grains!  I finally completely removed grains and I think that there's only been one vomiting episode in these three weeks!  I guess that we all really do need species' appropriate diets, and unless we're birds or mice, grains might be a problem (though perhaps better if soaked or sprouted).  
    • marey
      marey suzanne00

      Posted

      well you changed the subject...but yes....i insist no grains for our cats....wet pouches minimum dried stuff...but the latest issue is propylene in the pouches....so watch out for that. Groan!
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