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New to HS and in need of help

Posted , 6 users are following.

Zoeangel
Zoeangel

Hi all! I’ve been struggling with stage 2 HS for the past 5 years. It’s mostly in my groin area, making it particularly excrutiating. I wasn’t even sure what HS was until about a week ago, then the other day I actually got diagnosed with it, after time after time of doctors “ not knowing what it is”. It’s been an on and off problem, sometimes they’ll go away for a short period of time, but they always come back. I only get one or two at a time at the folds of my inner leg/groin area. Even though it’s only stage 2, they tend to get huge and painful, and when they burst, it’s a bloody mess. Because I’m young, I was told it was likely no surgeon would want to do any sort of surgery on me. My HS has made me severely depressed, and I have no clue what to do. Im lucky enough to have a fiancé who is being my support system right now with the whole process. Could anyone give me any beginners tips? Any help would be so much appreciated. Thank you! 

0 likes, 4 replies

4 Replies

  • Jb7567
    Jb7567 Zoeangel

    Posted

    Warm compress therapy and occasionally take a few hot baths during the week. If your not a candidate for surgeries make sure you research H S diligently because you have a lot of options . Don't let HS define u you have to try to control it the best u can since theirs no cure. And please remember find the right medical advice because there's tons of Doctor's that don't know how to treat your ailment . GOD speed and Happy Holidays.

  • LilBam17
    LilBam17 Zoeangel

    Posted

    Hey Zoeangel,

    How I wish I could tell you the one and done cure! How I wish you didn’t have to deal with this!  I’ve been dealing with this for 11 years. Only til this year did I decide enough is enough and doctors don’t help!!!!

     All I can suggest at this moment in time is if you smoke, quit or cut back. Cutting back will show you enough improvement that you’ll quit. And bathe twice a day with Lever 2000 soap. It helps cleanse the boils so they don’t get infected. 

    I’ve started this journey of getting better. First step was stop smoking (I’m almost there!!) second step is elimination diet. Once I go through that second step I’ll keep you updated. From all the forums I’ve joined. This disease has a lot to do with what we put into our bodies. Smoking, eating food from the nightshade family, dairy, coffee, alcohol. I’m taking one step at a time. Cause too many no’s all at once is proven to fail. I am the guinea pig for this disease. I’ll try anything and everything and will share my story as I go. If you need, I will be willing to give out my phone number to be support. Us HS victims need to stick together. I’ve dealt with depression over this and I’ve had it. Enough is enough. I’m gonna kick this disease to the curb and I wanna help those that have this crap too. 

    • Zoeangel
      Zoeangel LilBam17

      Posted

      Thank you so much!! So glad that there’s people like you that I can learn from. I’ll watch out for your posts. (: 
  • Kincaidm38
    Kincaidm38 Zoeangel

    Posted

    I had HS for two years before I was diagnosed. They tested it for herpes, other Std's. Etc. Then they would pinch it as if it were acne to get drain...weeks of hell before they referred me to a dermatologistn he knew what it was immediately. I had the surgery to remove it but due to the length of time thatbot went untreated and the massive scar tissue that it created. It was by the worst and most painful surgery that I have ever had. The stitches wouldn't stay in so it had to heal from the inside out. Surgery is necessary but be sure to plan on a week or two off of work EVEN if you have a desk job!! They cut all of the way to the sinus cavity to try to preveent reoccurrances. My dermatologist stated that he sees at least 10 patients a day for this of all ages. Get a second opinion for surgery..someone will regardless of age. Mine took 9 weeks to heal

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