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Clobetasol side effects and exercise?

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answers27843
answers27843

I was diagnosed with LS two days ago and am confused and concerned. I am 41 and was seeing a new Gyno and she was not super helpful or informative. She prescribed Clobetasol Propionate which I'm reading is very common treatment but the side effects sound awful (I haven't started using it yet.) Not to mention that the packaging says not to use it in the vaginal area?! I guess I will have to try it but I'm mainly concerned about it causing every day discomfort worse than the condition itself (I have no itching and only seem to experience a little pain when trying to insert a tampon, it's not that bad though.) I recently started working out again after a hiatus to lose some weight. I'm concerned that I will start using this cream and won't be able to work out for a month or longer or that exercise in general will make the condition worse. Does anyone have any experience with this? 

1 like, 24 replies

24 Replies

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  • mary09950
    mary09950 answers27843

    Posted

    For me the Clobetasol works very well, no side effects. I always feel better after using. It is suppose to stop any negative progression of LS.
    • answers27843
      answers27843 mary09950

      Posted

      Thanks Mary, the last few days have been kind  of a shocker learning about this condition so any replies/info from people who've gone through it is helpful. 

  • sue47444
    sue47444 answers27843

    Posted

    Hi I feel better when I use the cream , I also use caster oil every day .good luck
  • fran24104
    fran24104 answers27843

    Posted

    I have been recently diagnosed and have been using the cream for 8 weeks now.  It has been excellent and no side effects.
  • caroline16811
    caroline16811 answers27843

    Posted

    Hi there,

    I'm SO glad you found this forum, there is a wealth of knowledge and experience here and will hopefully help you to feel less frightened and isolated. The majority of us have had your experience "You have LS , heres your steroid now off you go and see you in a year ..... NEXT !!!!" 😈

    Read all you can from this forum, especially the webinar from an expert on LS who's name escapes me (can anyone help with that info please)

    Most importantly for now is dont be frightened of the steroid. LS causes thickening of the skin so the thinning effect long term useof a steroid can have normally does not apply to LS sufferers.

    My suggestions to start you off with some info.......

    If you have been given cream try to get it changed to the OINTMENT. It spreads and absorbs better than the cream. Also and most importantly , rub in for at least 90 seconds. This allows it to go into the deep layers where the inflammation is. Its important to use a barrier cream also I use HYDROMOL OINTMENT - it can be put on 30 mins AFTER the steroid. This will moisturise and protect the skin from urine. ( I have a little spray bottle of water which i spray after going to the loo then dab not wipe with toilet paper. )

    Have a look at your vulva weekly in a mirror. You need to know if it is changing in any way or you have any white patches.

    Lastly, many of us find sugar causes flare ups.

    Hope this is of some help to you and has eased your fears. LS is a horrible, isolating disease (who wants to talk about their vulva to friends???!!) But you are not on your own and the wonderful women on here will help in any way they can.

    All the very best. Let us know how you are getting on.

    Caroline

    • answers27843
      answers27843 caroline16811

      Posted

      Thanks for responding, it was really helpful and I will keep being informed. I guess that's the only thing I can do at this moment. So I have to ask this other question which might sound really dumb and I get it that side effects might be different for everyone - But is it safe to actually put the cream/ointment on the inner labia? That's the only place where my doctor said she saw symptoms. This is embarrassing to admit but I can't see any symptoms with a mirror. I don't have white patches, she just said that she saw some fusing. That just seems like... it's kind of fffing scary to think about spreading some crazy steroid on one's inner labia. 

       

    • caroline16811
      caroline16811 answers27843

      Posted

      Yes you can put it all around vuvla, labia and on clitoris , I do and right up to anus. I use it twice a week as maintenance.
    • sue162
      sue162 answers27843

      Posted

      I put it there it cleared up a big petechia I had from trauma and it didn't leave a scar it also reversed my white which was very very white back to pink.  I use Yes moisturiser in stead now as I use it only when there is a flare up. 

    • Torianna
      Torianna caroline16811

      Posted

      Hello there! I just joined this group.. Can you tell me a little more about the circular white patches and how long does it taje for al this to go away. 2 weeks..?
  • sue162
    sue162 answers27843

    Posted

    Hi the clob worked for me.  I like was frightened of the side effects and leaflet but used a small amount.  It reversed my white areas to pink and also cleared up a large petechia area on my minora as well with no scarring.  I got told to stop and use Yes moisturiser now as it seemed to clear it up,  I don't have itching either.  Once you've read a lot of threads you hopefully won't feel so frightened. X 

  • cheryl33619
    cheryl33619 answers27843

    Posted

    I do not use the cream I have a very mild case and it is a topical poison which I will never use unless I was really really bad I take borax baths instead and that takes away any itching and I use castor oil cold-pressed organic from the health food store it takes any itch away totally I was diagnosed in April
    • cheryl33619
      cheryl33619

      Posted

      The reason I do not use the cream also is because there are no symptoms there are no white patches there are no sores there are no anything that LS is supposed to have I have nothing but a mild itching and that is not everyday so this is why I will not use the steroid
  • Anna777
    Anna777 answers27843

    Posted

    Hi, I just wanted to add to what Cheryl said.  There are natural alternatives to steroids.  She mentioned borax. You can find out more by reading the thread, "An Experiment with Borax". Borax (sodium borate) and also baking soda baths have reversed my fusing, stopped the itching, and returned the white areas to healthy pink again.

    • answers27843
      answers27843 Anna777

      Posted

      Thank you everyone who responded here. It is very helpful to hear from other people in the same situation. It was the worst couple of days after the doctor just basically said "Yeah, you have this condition and your vagina could close up, here's the cream, fix your face, get outta here." 

      I appreciate everyone's info and I will keep reading all the discussions here and keep trying different things. 

  • mary09950
    mary09950 answers27843

    Posted

    I know some here say they don't use the prescribed medication they are given by doctors cause it is a steroid. Keep researching. The medical science shows that vulvar LS can turn into vulvar cancer and the studies shows that with this treatment the chances are lessened. I trust my physician's recommendation.

    • Anna777
      Anna777 mary09950

      Posted

      Hi Mary,

      I think it's important to remember that the risk of developing vulvar cancer is only SLIGHTLY increased in women with LS.  There is a greater risk of developing breast or lung cancer.  We should all treat this condition, whether we choose steroids or going the natural route.  I know your heart is in the right place and you are just trying to help. But bringing up the fear of cancer only adds more anxiety to the already challenging situation, especially in women who can't tolerate steroids.

    • mary09950
      mary09950 Anna777

      Posted

      American Cancer Society states four percent of LS cases become cancerous.

      Important to follow medical advise always. If not able to tolerate Clobetasol there are other medical creams available recommended by the medical community.

    • Anna777
      Anna777 mary09950

      Posted

      Hi Mary,

      I’m not connecting LS with breast or lung cancer. I’m merely pointing out that the risk of developing vulvar cancer is not as great as one would think. According to the National Cancer Institute, 12.4 % of women in the US will develop breast cancer.  That’s more than 3 times the risk for vulvar cancer in women with LS.

      And this is from the American Cancer Society: “The risk of vulvar cancer appears to be slightly increased by LS, with about 4% of women having LS later developing vulvar cancer.”

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