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.
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!”
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
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.
I feel the same way. I get them alot. I have tried everything and nutting is working for me either
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...
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!
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
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.
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.
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.
Ask your doctor about remacaid. Most insurance want you to try humira or energy first.
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!
Hello , please lets share each others research I have done alot! how can we compare our findings?
I have felt like you before but you have to keep going. I can barely walk sometimes because my boils gets big as a golf ball on my growin and between my bottom. There is no cure just keep trying to you find what works for you.
Remacaid did it help with the breakouts
I have them on my breast and bottom and the groin I have tried everything and nuttin is working on me I can barley walk and nuttin I can do. So done with all these
Yea recently they have been coming in my face. I've been dealing with this b.s. since I was 21 and I'm 32 now still haven't found anything that works. I tried the diet the antibiotics to me they made it flare up more. The only thing that kept them from coming so much was a bleach bath every other day and washing with hibiscus. The one under my breast always leaking and the one on my behind. I hate going threw this crap. I have lost so many jobs behind this crap cause I can barely move because mine gets so big.
I feel the same way I have them on my breast and they just seem to come more now nutting is working for me I have been on so many antibiotics and tried the bleach bath and the hibsisus and that burns I'm about to give up I'm so done with it I tell my husband I didn't ask for this. And I don't want it it's hard to do anything with these I have 3 on breast one under each arm and 2 on groin and bottom really done