I'm in the US, too!

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Hey there... I was just diagnosed this spring, but have been dealing with pain down there most of my life - first it was yeast infections, painful sex, vulvadinia, vaginitis, now LS. I started with Clobetasol, now using Protopic and trying to get the dosing right. I bought emu oil at a natural remedies store here in MA. I tried it, but didn't feel any better with it. Vaseline seems to help, along with 5% Lidocaine (but that stuff burns!)

The more I read, the more I think I should cut back on sugars. Seeing a specialist in Boston later in August, after going to my gynae and a dermatologist this summer.

Just wanted to share my story... 

T. 

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8 Replies

  • Posted

    Welcome T-top. Your story sounds like mine. I've had LS 62 years, but was only diagnosed a year ago. I'm not too far from you – Ontario, Canada.
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    • Posted

      Hi Morrell...

      im so glad to have found this group, but I'm feeling so miserable having to deal with it. 😞 

       

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    • Posted

      hi there!! your story sounds like mine as well! Please keep in touch..I would love to hear any updates..I'm in Philly. Have had a nasty erosion these past few days...got quite depressed..I think I am going to have to work on that aspect of me.
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    • Posted

      T-top, I was miserable too for the six months after my diagnosis, I think for two reasons.

      One, I smacked my forehead for not paying attention some years back when I self-diagnosed accurately from photos on the internet. I just shrugged and saw it as a separate thing from psoriasis, but probably part of it and did nothing about it.

      Two, once my husband understood my problem he admitted he'd known for the two years we'd been together that I was having pain during intercourse. So he's been totally fine with no sex, but it took me six months to believe him and relax around that aspect of our relationship. I've stopped worrying about it and I've really gotten into our cuddling routine.

      I didn't fully realize that most women have no trouble with their vulva (I could never figure out how it was possible to be a prostitute) and that I'd drawn the short straw. So I was pretty bitter.

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    • Posted

      I've always been skeptical to the fact that stress can cause physical problems, but this past spring has been one of the most stressful times of my life... And boom, LS.

      Maybe I should start meditating? Yoga? I'm a kindergarten teacher, so work stress is high, especially the last few years with all the scrutiny over accountability and changes to curriculum... 

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    • Posted

      I was a hardcore Buddhist for twelve years and did tai chi for four years before that. Up until then I was nearly consumed by anger at my children's father, whom I'd left after fifteen years. My anger finally subsided. Then I got a new job where I was the office bitch in a high-pressure advertising company and nearly got fired. My boss got me a life coach. That set me on the path to Eastern philosophy (not that it was her stated intention). After that I became more like the eye of the storm at work. People would come to me with their problems. I've been retired in the countryside for nine years now and mostly do needlework and gardening to relax and calmly focus. I was a commercial illustrator and I don't even bother with trying to sell a few paintings any more.

      However I was reminded how stress affects the body when I started dating in 2008. Bang! My psoriasis flared horribly with a new wave with each new man. I mean, the same day! During the lunch date! Once my husband and I had settled in after about a year, my psoriasis began to clear. It's been 100% clear for a whole year now.

      My feeling is that yes, some jobs are more stressful than others, but if you've watched the TV series 'Nurse Jackie' it's clear that some people wallow in the drama and multiply the suffering. That's exactly what I'd been doing before I had the three months of weekly coaching.

      The other thing I do is go for shiatsu therapy every three or four weeks. It started out as a treatment for psoriasis, but now I see it as a balancing / maintenance thing. I felt energy move in my meridians as a serious tai chi practitioner, and I took an eight-week amateur shiatsu course, so I get the full (placebo?) effect of the pressure point work. I enjoy it like some people like a spa. My therapist is also a coach, so we've become friends, but she's a darn good coach and has helped me with some things like getting along with my aged mother.

      I had two choices when I was working: I could buck the system, or I could see every hour stuck waiting in an airport line, every night in a hotel room, every meeting with demanding clients, as my life, rather than something that was taken from my life. Instead of obsessing about having to breathe aircraft air and endure the food, I appreciated my opportunity to soar above the clouds, something Emily Dickinson would have written an amazing poem about if she'd had the chance!

      Well, you hit the button there, sorry I've gone on so long.

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