Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
I am 27 and I have been in stage 3 of HS for 10 years, Suffered for 15, I have it Under breasts, Thighs, Under stomach, On stomach, Armpits and down my sides, buttocks and spreading... They are starting behind my ears and i think the back of my neck,
I have been to countless doctors and specialists, Been on trials and spent years of my life on antibiotics and anti depressants and today im just done... I have 2 small children and partner left, No doubt to do with my ever fading self confidence and worth and lack of intimacy.
Im starting to feel that the only way out of this horrid mess is to end it more permanently.. I can not do this anymore, Im always in pain and always frightened of where they are going next! Im tired of doctors reassuring me that they will go away soon when, from the research i have done, shows me that is not happening anytime soon!
The anxiety this disease gives me is leaving me not wanting to do anything, I dont eat, To try and get the weight gone, I dont sleep because i think non stop and i have lost a great deal of friends and loved ones as they dont understand! Mostly because im too embarrassed to explain...
How the hell do i pull myself out of this, and is there any point! ....... This is no life at all.
I have been to countless doctors and specialists, Been on trials and spent years of my life on antibiotics and anti depressants and today im just done... I have 2 small children and partner left, No doubt to do with my ever fading self confidence and worth and lack of intimacy.
Im starting to feel that the only way out of this horrid mess is to end it more permanently.. I can not do this anymore, Im always in pain and always frightened of where they are going next! Im tired of doctors reassuring me that they will go away soon when, from the research i have done, shows me that is not happening anytime soon!
The anxiety this disease gives me is leaving me not wanting to do anything, I dont eat, To try and get the weight gone, I dont sleep because i think non stop and i have lost a great deal of friends and loved ones as they dont understand! Mostly because im too embarrassed to explain...
How the hell do i pull myself out of this, and is there any point! ....... This is no life at all.
Have you looked into IgG and IgE testing? I wrote about it in the thread "might have found my answer"
Stay strong
In my mid 20s and early 30s I thought I was the only one living with this curse and I often wondered just how long I could do it... sometimes I am laid up for a week or two and can't even walk or take part in my own life. I am glad I have never gave up, in time it does seem to get better but not without a lot of work on your part to find out what triggers your HS! I have lost weight and stopped smoking and have found that that has helped to make the boils less painful and they don't seem to last as long! Stress also is very bad for my HS!! When my dad passed away I had my worst one ever and though for a min this might be the one that takes me down for the count. I became very sick and HAD to take their freaken pills because I was septic. But honesty I have found that the antibiotics only help while you take them then when you HAVE to stop HS comes back with a vengeance! Surgery seems to take away the exit point and forces your body to make a new one so I never opt of that! I am trying now to figure out if some foods are my triggers... which I believe has a lot to do with it! I know none of this really helps you right now but just know you are not alone!! I would have loved to have found this sight years ago!! Best of luck and stay strong!!!!
In April I went on a low carb diet and noticed that the flares in my groin came to a stop. But not on my buttocks which is where my HS started. My first idea was that the improvement was due to lower insulin levels/ improved insulin sensitivity. Then I did some research and came across Tara Grant's book The Hidden Plague. I do not own the book, but I read excerpts and also some of Tara's posts. I was highly skeptical. Then I did more research on intestinal permeability (leaky gut). And I found out that it has been proven by conventional medicine/researchers to exist in Celiac Disease. That's when I decided to give Tara Grant's approach a try. As strange as the connection may seem, but there is growing evidence that autoimmunity is related by poor gut health. I have been following the Autoimmune Paleo Protocol for about a week and it has brought further relief. There have been no flares for almost 3 days. No new lesions and no tenderness in the old lesions. All is quiet. It's scary. I know it's not much. But I will not give up!
If The Autoimmune Paleo Protocol is too much, I urge everyone to try a low carb diet or Paleo -- as I still think insulin plays an important role --- and additionally to cut out all nightshades (white potatoes, all tomatoes, egg plants, peppers chilis and all chili spices) from your diet, as these seem to be the worst offenders for people with autoimmunity.