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Hello I am a 33 year old female I was diagnosed a year ago. I have been on numerous antibiotics and nothing seems to work I've tried different creams they don't work I am now on Accutane? has anyone else tried it? Having this horrible disease can be so depressing makes you shut down from the world around you. Do you ever find yourself emotional for no reason? Im currently out of work because my pain is so severe. For people with them bad under their arms do they feel that when they stand gravity makes them hurt worse? I have them under my arms butt private inner thigh and I have had them on my face. I have messed up so many of my clothes, that now I don't even bother getting dressed sweats and a tshirt has become my everyday attire. I am trying not to let this disease get the best of me! 

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  • Posted


    I'm 56 and it very hard to wear anything but sweats. I've tried all kinds of antibiotics and nothing seems to work. I just had surgery Wednesday for two different area's. Very painful but if I can get into life again that good too..It does work on me mentally being in pain all the time wares one down. Hold your head up n push on get surgery and get back to living....

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    After 10+ yrs I am under the care of a really good dermatology team who understand the condition very well. After months of suffering with a major flare up that became infected I feel like things are under control and no pain!

    I had three weeks of intravenous antibiotics, and steroids whilst in hospital and once discharged I was put on a daily dose of Dapsone. That was just over 6 months ago.

    Right now I am still healing, I  have my dressings changed daily by nurses and in that time have had to have 3 courses of oral antibiotics whilst still taking the dapsone, but I no longer think about what I am wearing each day and I'm no longer in constant pain.

    I am back to work, but only part time for the moment. My moods have improved but I still have days where I feel like I just want to be "normal". My anxiety levels are high and I do worry about the smallest things. But keeping myself busy tends to keep my worries at bay.

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    • Posted

      Did you ever get the surgery done I didn't read that. And if so his long to heal. I'm on day three and the pain is not as bad as I thought but they havnt changed the dressings yet and I dread tomorrow. The areas where they did mine where rare. Well one was the other not and for a man it in a horrible sensitive place....

      I thank you for the drug names as I will ask about them. 

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    • Posted

      I didn't get surgery this time round, although did see the consultant who was ready to book me in but because the drug treatment has worked so well we decided not to go ahead this time.

      I previously had surgery in 2005 and 2008 on right and left armpits, the right one went well I was off work for maybe 2/3 weeks going back and forth for dressings however then reoccurred by 2009. The left has been clear ever since surgery in 2008, they went a little deeper and I had a tube drain in for 24hrs, it took longer to heal but like I say I have not had any further problems there.

      My most recent flare up has been in newer areas I was also given some creams too, started with fucibet, then betnovate c, and have just started using crystacide (hydrogen peroxide) as swab results showed some growth of pseudomonas. 

      Changing the dressings shouldnt be as painful as what you have probably been going through before the surgery the nurses are pretty good at what they are doing, if you do not have a high threshold for pain trying taking some pain meds before your appointment.  Mepital and Mepilex are good dressings, they do not pull on the skin as much and very absorbent too! Have been using them the past 6 months and find them much better than mepore dressings.

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