Severe case of HS

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Hello, I have been battling hs for many years. Have had multiple surgeries: groin, tailbone, both my arms, and my stomach. My tailbone has been 4 times with a severe case of mrsa imaginable. The drs won't do anything but operate. I'm on disability because of this. It also had gone internal causing me to have HPV with start of cancer. My end result was a hysterectomy. I can't handle the internal one anymore. They grow to the size of eggs or bigger and painful. I quit smoking it got worse. I shave it flares. I don't shave it gets worse than shaving. I'm at a complete loss. Please if anyone has ideas for me please lemme know. Any time exercise I end up with a flared up tailbone. Antibiotics not help. Please help!!

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  • Posted

    I am so sorry. I am suffering with HS under my arms only, and I am having my first and hopefully only surgery next week. They are painful and depressing. I have had a hysterectomy a year ago because of fibroids. Since the birth of my first and only child in 2014 at the age 27, I have had 8 surgeries ranging from oral, carpal tunnel, appendicitis, hysterectomy, Dr Quervain, and the list goes on. However, I have not had surgery because of HS being that I thought it was staph. I have heard and read many positives and negatives regarding HS surgery, but I have to give it a try. I do not think it would be any more worse than the pain I'm feeling now. I wish the very best for you.

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  • Posted

    Hi two worlds, your case sounds severe, mine has been also, perhaps not quite as bad. It took me twenty years to work out it was diet and gut related.

    Avoiding all nightshades, especially potato and paprika. Reducing dairy, and sugar. Have you thought along these lines and looked for food triggers. There is a lot of discussion on it these days

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    • Posted

      Interesting that, have you got any diets to recommend? like a challenge!! being a suffererer for this for over 30 years, id hate to give up tomatoes and potatoes ;( but will give it go all the same, thanks !
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    • Posted

      Hi Sarah, please do give it a go, I really hope it helps you, it does seem to for a lot of people.

      I miss potato chips but you can replace them with Sweet Potato Chips/Wedges or Corn chips (just don't have paprika in the flavouring).

      Stufy the list of nightshades, for me Potato and Paprika seem the worst (Paprika is on and in everything.. ie Salami... flavouring)

      Once you see that you stop getting flare ups, you will be happy to stop eating it... when you get small flares you can try to work out what you ate and often put it down to some particular sauce with paprika/tomato.

      To be honest, I think tomato doesnt affect me too badly but I don't trust it...

      Some things will affect you in small amounts once off... some will take a few hits to build up.

      I don't want to scare you off... but as far as suggesting a diet... people seem to use the Paleo Autoimmune protocol.

      For me... I basically limit myself to a really plain diet: rice... beans/peas/cauliflower/brocolli/carrot/lettuce... and lean meat, chicken, fish...

      seasoning salt and pepper only

      limit dairy and sugar

      Then... play around and introduce other foods.... if they trigger your condition, the falre normally happens as they hit the gut about 12 hrs after consumption

      I really suspect some inflammatory condition in my gut over something ike 20 years... so I also use pro-biotics without any scientific reasoning... but feel like they help my skin a lot

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    • Posted

      Hiya, thanks i will deffo try this approach, Drs today as 3 merged into one causing a huge abcess, was horrible, no Drs appointments and dont feel it is a life threatening illness, it actually can be ive learnt,should have been in hospital really, but found a sterile needle and stabbed it myself to let the pressure out, as we do out of desperation! its really got me down over the last few months no work and become unreliable due these outbreaks, cant tell people that you have boils on your personal areas! really embaressing!! but thanks for your help smile

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    • Posted

      Hey Sarah, I know this feeling exactly.  Poking and prodding it and hiding it for 20 years...  Armpits, groin and backside.  Eventually at 40 the one on my backside (pilonidal) merged into a huge abscess that needed hospitalisation... I do wonder if it was an MRSA or Staph infection I was carrying for years... I was in hospital for surgery, bed ridden for 10 days while pumped full of intravenous antibiotics... All my other HS has recovered using the diet since... and I do wonder if that major infection I carried for years was perpetuating everything else. (of course I went to many GP's an dermatologists along the way - but mostly always dealing with it myself)

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    • Posted

      I must say I do still have a couple of very small abscesses but they are like a litmus test if I eat any nightshades.... they will try to flare for 3-14 days... I'm trying to be as strict as possible and heal those.. maybe I could go and ask for antibitiocs to see if I can knock it on the head... but I seem to be very close to controlling it 100% with diet

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    • Posted

      Thats fab news if you are in control of it, did anyone else in your family suffer? the poor lady at the top of this thread, sounds poorly from it also, horrible thing, im going to see if i can claim some sort of help for this horrible illness, had a massive alien removed a few years back from under arm, but they keep coming back around the same area, anti biotics dont work and are not good for health long term i dont think they strip your immune system back to nothing! its frustrating.
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    • Posted

      whats been youe worst excuse from a Dr over the years! mine was "Well, you are just a lumpy person!! lol

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    • Posted

      My mum's brother had "something on his bum".. but mostly everyone in the family deny it...  I've done all the numbers 1 in 3 have a family history, 2 in 3 are female, 4 in 5 are smokers etc.  (quitting doesn't actually help though - it will help speed healing times)

      Worst excuse has been 'it's in the blood an autoimmune condition"..  untreatable...  or hygeine - told me to wash in the shower with a topical cream called Phisohex which I did for 10 years and never actually helped.  No-one ever mentioned diet....

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    • Posted

      My mum's brother had "something on his bum".. but mostly everyone in the family deny it...  I've done all the numbers 1 in 3 have a family history, 2 in 3 are female, 4 in 5 are smokers etc.  (quitting doesn't actually help though - it will help speed healing times)

      Worst excuse has been 'it's in the blood an autoimmune condition"..  untreatable...  or hygeine - told me to wash in the shower with a topical cream called Phisohex which I did for 10 years and never actually helped.  No-one ever mentioned diet....

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    • Posted

      My Mum had it, she was a seamstress so she said she used to be in agony sitting down to work! only recently told me this! thanks Mum lol, its not really a thing ill talk to to anyone, apart from fellow sufferers cause they understand the heartache! and most people think you have leprosy if you even begin to bring up skin conditions, people dont understand it!
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  • Posted

    I'm in the same place you are, except my Dr won't operate because they're "too small". I have one right now in the groin area right on my pantyline where your leg and groin meet. It's the size of a dime. It's been secreting pus for 5 days despite treatment with hydrogen peroxide and triple antibiotics ointment and because of its placement I must put a band aid on it. I was diabetic, but am no longer on meds. I don't smoke more than 5 a day and right now, with other life stress, that's as low as it's gonna get for awhile. My Dr originally diagnosed them as sebaceous cysts but I believe they are this HS based on what I've read about the two.

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    • Posted

      yeah they will not operate if its not large enough to do anything about. I was just recently put on an antibiotic cream that i have to put in my nose once a day. not quite sure if it works or not. my doctor even said that if i lose weight it will not help because he has atheletic people who have horrible hs. smoking or not smoking as i am both didnt do anything for me no worse no better. warm baths will bring it to a head. when it becomes extremely painful and itchy you know its about to pop. TO EVERYONE LET THEM POP ON THEIR OWN DO NOT POP THEM YOURSELF YOU HAVE TO MANY INTERNAL ORGANS THAT CAN CAUSE A LOT OF ISSUES IF YOU POP THESE. ESPECIALLY IF YOU HAVE OR HAD MRSA. i will let you know how this new antibiotic works.
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