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HS and finally despair

Posted , 11 users are following.

Bee81
Bee81

So, I’ve had HS for over 20 years.  I’m in my late 30’s.

I have tried EVERYTHING now and nothing works.  Antibiotics, surgery, immune suppressants, diet etc etc 

I was always slim and never smoked.

Basically, I want to give up.  This last year it is worse than ever.  And I hate it.  Really really hate it.  The pain, the continual humiliation, the constant degeneration.

Endless counselling, CBT, even pills do not work.  Why?  Because it is objectively disgusting.  There is no other way to look at it:  It looks terrible, and smells putrid and it will only get worse and worse.  I know the coping techniques, ‘mindfulness’, being kind to yourself... but all that is undone when i look in the mirror and see the rankness of my HS riddled body.

I don’t know why I’m posting.  Perhaps i’m tired of the upbeat clap trap i’m fed from professionals.  Perhaps to make people realise the abject pain of it.  Perhaps because I want to give an explanation about why, sometimes, I just want to not go on any more.  Perhaps because I desperately need help.

I hate that I have become so weak but I don’t know what to do.

0 likes, 22 replies

22 Replies

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  • simon06289
    simon06289 Bee81

    Posted

    Keep fighting and hang in there. It WILL get better. Take your medical records and change your doctor, get as many opinions from as many different doctors as you can and don’t give up. It hard and this is a horrible disease but it will go away eventually. Winston Churchill said “If you’re going theough hell...keep going!” 
  • lisaloo100
    lisaloo100 Bee81

    Posted

    This has made me sad to read this 😢 I have suffered for 26 years and I am no further forward with any treatment... it drags you down... I totally understand how you feel but please don’t let it beat you! It shouldn’t be allowed to win! 

    I have attempted to get on any research programme for HS  I can find, but so far no luck. I am determined to feel better and at times, I do, but the norm for me is constant breakouts.  Nothing helps does it?  It’s an absolutely vile condition to live with and non-sufferers cannot even imagine the pain but please remember you are not alone - there are many of us feeling similar to you. I really hope you find some kind of relief and feel a bit brighter very soon xxx

    • lady15469
      lady15469 lisaloo100

      Posted

      Ask your doctor about remacaid. Most insurance want you to try humira or energy first.
    • rose90378
      rose90378 lisaloo100

      Posted

      Hello , please lets share each others research I have done alot! how can we compare our findings?
  • c02819
    c02819 Bee81

    Posted

    I am very sorry for all you're going through. You do not deserve that. You have every right to feel mad, sad and exhausted. I too have dealt with HS for many years. Sometimes I feel like giving up then I look around and realize how even with this horrible disease I am blessed. I have three little boys that look up to me. I am no longer strong for me but for them. I hope you are able to find some of that strength as well. This disease is hard and there is no cure yet but don't let yourself give up. You are worth living! You have this disease however you are not the disease.

  • christine60829
    christine60829 Bee81

    Posted

    I feel the same way. I get them alot. I have tried everything and nutting is working for me either
  • Bee81
    Bee81

    Posted

    Um.  I really don’t know what to say, other than a heartfelt thank you.

    I reread what I put and cringed.  It was so awful and self pitying - I expected a proper telling off!  And yet you were all so kind.  

    I recently divorced, and whilst HS wasn’t the primary reason (would be naive to suggest that), it certainly played a part.

    So, what can you do, day to day, to deal with this as a reasonable person?  I don’t want to feel like this...

    • simon06289
      simon06289 Bee81

      Posted

      No need to cringe it’s understandable with what you’ve been through. Don’t let HS rule you, there are so many things you can still do even when the flares are bad, find something you enjoy doing and when times get tough focus on that. Take one day at a time, if you feel like nothing your Dr has offered is helping then change your Dr. You won’t feel like this forever, keep fighting!
  • lady15469
    lady15469 Bee81

    Posted

    Hello,

    I was diagnosed finally in 2007. I have had so many surgeries I can not recall. It was not until I went to see a rheumatologist for new diagnosis Rheumatoid arthritis put me on remacaid. Infusion but 80% HS improvement. Less inflammation/drainage

  • harry87125
    harry87125 Bee81

    Posted

    My heart goes out to you. I was very lucky to have a great team of surgeons back in 1970 remove half my buttocks down to the muscle. All the grafts took. I was free if it until 2007 when it came back. I lived with it for 10 years. One failed knife surgery. CO-2 laser surgery at Cleveland Clinic in Ohio Dec 04. Burned it all away. About 2- 1/2” long. 1 1/2 wide. Almost all healed. Hope they got it all.
    • lady15469
      lady15469 harry87125

      Posted

      Had laser too with Dr. Hazen at Cleveland Clinic too. It is back and tunneling but could be worse without the remacaid. Pray it works for you.

  • lady15469
    lady15469 Bee81

    Posted

    I told you that I have stage three, tunneling in groin, inner thighs up my buttocks, under breasts, arm pits. I have been butchered too. I am concerned about prescription pain meds and addiction. But remacaid infusion made a big difference. Less swelling and drainage by 80%. Talk to your doctor about it. Don't give up.

  • rose90378
    rose90378 Bee81

    Posted

    Hello..your post caused tears..I am so sorry that you and others including my son are suffering this horrible disease.  Please share what you have done with diet, how long and consistent were you with it , please allow me to share my pain staking research after you reply, please!
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