I am 19 years old and have dealt with Hidradenitis suppurativa for as long as I remember, it started off not too bad but as countless doctors visits failed me it soon got a lot worse. I cannot explain how low I am feeling right now, I turned to this group for support and I am usually quite a private person. I feel as though I've hit rock bottom, I've just been sent home from work with a gaping hole under my breast which has been causing me agony for the last few months. It's refusing to heal, I've been able to cope with it until now but the pain has reached a new level. I know you're thinking, why hasn't she been to the doctors? I am embarrassed, I feel ashamed of who I am and this horrible thing I have, I had antibiotics before and they never worked so I just feel like everything is pointless. I feel like giving up, after endless tears and years of self hate which has now got so bad I can barely look at myself in the mirror without my clothes on. HS has ruined my life and continues to do so, I feel as though it is destroying me and all I can do is watch, in pain constantly. I don't know where to turn or what to do next I am completely clueless! I started to enjoy swimming again a few months back, I can no longer go due to open wounds. I feel like everything is spiralling out of control and I just can't stop it. I am on targets for sickness at work and fear I will lose my job. This is really a cry for help, if anyone knows anything that could help me I am willing to try it, I can't go on like this much longer, it's tearing me apart!
I can understand how frustrating and dependinghs can be. Ia am new to trying to cure this for most of my life i hid hs from everyone. What i have been doing is reading about hs and changing my diet i am working on taking all sugar and gluten out of my diet. i had an abssess drained last week and its healing better then i had hopped i believe due to diet.and I am drinking only water with little to no brake out since i started. I read zinc helps some people also i haven't tried that yet.
My HS is in remission after cutting nightshades and nuts. I had it for years and was in stage 4 and had tried EVERYTHING else. Good luck to you! Don't give up!
I would definitely suggest looking more to diet than medicine, it really has helped a lot of people. My HS has 95% gone now after changing what I ate so it definitely is worth a try
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Kallie your not alone, I just joined this group last week out of pure desperation too. I am so sorry you are going through this, it is so hard to deal with it can leave us feeling like we hit rock bottom but your not alone through education and support we will get through this. We are here for you (sending hugs).
Unfortunately I don't have lots of tips the group has been proving me with some the only two I have noticed for me is sweeteners make it come back and I can only use antibacterial soap (not sure why either of those things make a difference)
Good luck, we are hear for you.
What's nightshade (a few people in.group told me cutting them help)?
Thx
Like many other posters have stated, diet seems to be a huge factor in getting HS under control. I was full blown stage 3 before I was diagnosed so I completely understand the doctor-hate. I finally linked my breakouts to nightshades, but everyone with HS seems to have a different trigger so I would try the Autoimmune Protocol, or AIP diet. Also, a lot of people have had success with a Turmeric and Zinc supplement regiment.
I know how frustrating this disease is, especially knowing that we're all pretty much on our own since modern medicine hasn't caught up with us yet. Take this one day at a time and just remember you are absolutely not alone