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Recent flare up with LS

Posted , 16 users are following.

maryella
maryella

Last week had one of the worse flare ups of my LS.  Decided to goggle "Causes of flare up with LS", from which I found this site. Surprised to find so many afflicted with this disorder, started reading the posts and learned about foods to avoid (went to a birthday party before flare up and consumed a large amount of cake and icing and even brought some home!!).  Also normally eat dairy (cheese mainly).  Stopped eating any sugar and less cheese, stopped using soap down there and got some vaseline along with using my RX prescribed. Almost completely clear of symptoms in less than a week!!  None of the physicians I've seen have advised me of any of these remedies to try.  Thanks to everyone for their posts, so glad to have found this forum.

5 likes, 48 replies

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  • debi14820
    debi14820 maryella

    Posted

    Wow Maryellla. You have tremendous will power! I've given up dairy, but I'm having a very difficult time giving up chocolate! I rely on it to make me feel less depressed. So diet really DOES make a difference! And no soap. I've been using coconut boil instead of soap down there. It does seem to help. I also have vulvodynia which is chronically painful. For that I use Aspercream with lidocaine.I don't think most Dr. read about other solutions to these problems. I mentioned my Coconut Oil and Aveeno Bath with Oatmeal, and my doctor thanked me! I think they study prescription meds and forget there are simple treatments too. Maybe we can educate THEM! I'm glad things are better for you. Take care!! Debi

    • arlee
      arlee debi14820

      Posted

      Debi. There are some great dra out there who specialize in volvodynia. I suffer from it too. It’s awful. Problem they’re not in my city which is sad 
    • arlee
      arlee

      Posted

      Meant to say doctors
    • maryella
      maryella debi14820

      Posted

      I love chocolate too!!  I'm currently trying to lose some weight and use the Atkins snacks for my chocolate fix...limit one a day!!

    • debi14820
      debi14820 arlee

      Posted

      Hi Arlee, I will look into that. The vulvo Dr. I have a Gyn that I like, however shes not sure what causes vul.. dynia. So I'm going to be looking for a specialist. I'm sorry to hear there aren't any specialists in your area. I hope you can find relief in other ways. I use Aveeno Oatmeal Baths, baking soda baths, Aspercream with lidocaine, and ice packs and sometimes heat. I put cold packs right over vulva, and heating pad over lower abdomen/perineum. I hope something here helps you.

    • arlee
      arlee debi14820

      Posted

      Debi. Do u have pain in your lower abdomen?  Sometimes I get pain. I had pelvic ultrasound. All was good.  This is one good vulvar dermatologist. She’s not taking new patients. Very maddening 
    • debi14820
      debi14820 arlee

      Posted

      Hi Arlee

      No I don't have pain there. Just in vulva and high Vjay.  I have heard that pain in lower abdomen comes from pelvic pain. I had pelvic PT and it worked great. Maybe make an appointment to see one if you can to get a consultation? 

    • arlee
      arlee debi14820

      Posted

      I’m going to ask my dr about pelvic PT

      I also get pain in vulva and beyond.  

      I had months of no pain or burning - then this past June it came on with a vengeance. I’m also using hormones 3x week. Not really helping 

    • debi14820
      debi14820 arlee

      Posted

      Yes, sometimes it does come on very savagely. For me too. First I get very anxious, then I remind myself, come on you've dealt with this before! Then I start my routine. Baking soda baths for comfort, coconut oil for Moisturizing and Emuaid for comfort. I also am still seeing my pelvic PT. It all works together for me. I hope you can find a routine that helps you! Best wishes. Debi. Also, the estrogen cream can take a long time for you to notice a difference.

  • Wee_Dugie
    Wee_Dugie maryella

    Posted

    Just to add my observations of what brought about my worst flare up, that ultimately led to my diagnosis of LS / BXO around 8 years ago. 

    I am a 61 year old male - in my early teens I realised I had a very tight foreskin - I  set about curing this for myself: I used a very commonly available 'skin repair ointment' (Germolene) and with a great deal of effort was able to stretch my penis sufficiently to start to expose the head / glans - and long-story-short, it was not until I was in my late 50's that I was able to expose the majority of my penis head (my foreskin is fused to the lower part of the head of the penis!).

    During the intervening years (i.e. up until my diagnosis) I had always used oil based skin lotions / lube / baby oils/gels etc both following having taken a shower and for my sexual practices.  What I feel was going on was that I was building up a severe dermatological reaction that coincided with my LS (which, I probably had from around 4 to 8 years of age) making itself particularly obvious.

    *What I would therefore recommend is for anyone who has a diagnosis (or, suspects they may have LS / BXO) and cannot get control over their flare ups is to ensure the entire groinal region (i.e. front and back) does not come into contact with ANY oil based items (paired with scrupulous hygiene practices), used for whatever purpose (skin care, sexual activity, etc) as this may alleviate symptoms to a manageable level (for which I use Clobetasol most days of the week)!

    Hope this is useful to someone ......

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