My Story...

I have been living with HS for about 10 years now and everyday is a struggle.  The pain from HS is something I never felt before some days it hurts to walk, sit, even move my arms.  I have tried just about everything to help with this but nothing seems to work.  I'm at a total loss of what to do.  Living with HS is hard... I never wear tank tops in the summer because I'm too embarrassed that someone may see the scars.  It was really hard to find a man who was not disgusted by it.  It is hard to get close to someone and have to tell them what its all about and they say its fine but I can tell that it grosses them out and know there is NOTHING I can do to fix it.  I have now found a man who loves me for me no matter what but I still feel so uncomfortable in my own skin.  I just want all the scars and the pain to go away so I can feel good about myself...

bwynnsgirl bwynnsgirl
22-25, F
10 Responses Dec 28, 2009

I have been suffering with this disease for around 25 years or more, and have only just been diagnosed in May with this horrible disease. I have been up and down the doctors for years, I have now been told I am at stage 3 in need of help with no one to turn to. I am like you in constant pain, I constantly feel sick and ill with this and nobody including the doctors want to know. I wish I could give you some answers, but I am like you a victim of this horrible disease.

i have had hs for a very long time, since i was a teenager but was only diagnosed ten years ago, befor that other doctors had said that i had some kind of std so had to live with the pain and the embarrasment and the shame of this very very painfull desease, i have allso thought about killing myself severa ltimes, i have clusters of boils under both my arms and in my grion and anal areas that pay you back tenfold in pain if you dare to move and then tis nothing like any pain you will ever feel, only ppl who suffer with hs understand that we have an illness that does not like you to have a hot shower or bath and if you can it has to be warm, you dont get to feel really clean because as soon as you dry off another one will burst and your left with a smelly body again and it smells like nothing you have ever smelt, i am now 50 years ol and am not holding out for a cure in my lifetime but hope that a cure is for the younger sufferers in there time, and thi desease is that bad i would not wish it on anybody, i spend most of my days crying and taking tablet of all types last count was 22 tablet a day including painkillers that dont and are probably doing me more harm than good, and now there is the added concern that my liver is not in the best condition, thanks to hs lot more to worry about now, it has been really good to be able to have a rant about hs nowing that your not alone makes it a little easier to talk about, and to give you an idea about pain it has taken me 45 minutes to type this, so i will just say keep hope and loved ones in you heart during the bad spells good look all.

I am interested in speaking with other people that share the same pain. Thank you

I have had HS for almost 20 years and yep its so embarrassing, I never really went to the dr until here recently when i had the worst outbreak ever. <br />
He put me on a daily regimen of rifampin and clindamycin. Is anyone else on this? for how long? did it help? <br />
Seems to be at least slowing it down for now. <br />
Ive been married for 5 years and its still embarrassing and it was always weird taking on a new sexual partner and trying to ease their mind that its not an STD.....

I'm also taking rifampin. But's it's only been a week or so, I'm not really seeing any changes but I'm still hoping it will clear up a bit. I'm planning to get a surgery afterwards for the scars, has anyone had experience with it?

I recently had a course of rifampicin and clindomycin, iv been clear for the last 3 weeks, no new outbreaks at all :)

I'm a 19 year old teen girl and I have been suffering from HS for 10 years now. I've been to doctors since then and none of them diagnosed me right except for one just a few days ago. I'm now taking antibiotics and applying creams, etc. But...<br />
The problem is that I can't focus on anything anymore. It's so hard for me to deal with. I feel so ugly and so ashamed. I just sit in my room all day crying cause I know there is no cure for it and I'll be a disgusting corpse all my life. I can't even imagine myself getting anywhere, no marriage, no boyfriend, no intimate relationships. I want to feel like a woman but I can't because the moment I look in the mirror I have the urge to throw up. I hate myself so much that it disgusts me. All I think about is this disease and why does it have to beme? Why did I have to go through this.. I see my friends and other girls posing in bikinis, having fun at the pool parties and I can't even move my legs so other people aren't grossed out by my skin. I'm tired of hiding constantly and thinking about how it feels like to have a normal body. My only wish that these scars and damaged tissue would go away. I'd be the happiest person alive... Then I remember that it's all a dream and my body will never ever be normal. I don't know what to do..I just want to kill myself because if there's no end for this and no cure I am sure that I won't last long....<br />
<br />
I hope everyone suffering from this keeps going strong. I just wanted to get this out cause I can't talk to anyone else, no family and no close friends.

keep your head up...
you will find someone that loves u and will accept it.
try talking to your family because it is genetic.
They are working on several treatements and it is very possible they will find a cure in our lifetime at least we have to think that way!

I feel your pain. I also suffer from H.S. Mine started in 1999. First in my armpit then about a year later it appeared in my groin. Sometimes the pain is unbearable!!!!! I've thought about taking my own life too, many many times, and I still do. What stops me from doing so is the love and support from my family. This is the first time that I have ever shared my story with anyone other Than family and close friends. It's very hard to describe the pain with someone who doesn't suffer from this too. It's sad, but it's nice to know that I'm not in this alone!

I'm the same age, I've had HS for about the same amount of time as you, too. I go through the same delusions of self hatred and body image, as well. I actually joined to tell you this. Today is the first day I've ever reached out, and I want you to know that I'm here, I'm at the same stage in life as you, so if you need to talk, I'm here.

Wow & thanks!! I feel soooo bad that anyone has to suffer from this so for that I am truly sorry but at the same time it is good to know that you are not alone. I was FINALLY diagnosed about 5 years ago but not before being misdiagnosed for 10. For me I suffer with both pain & severe itching. This makes for a difficult existence. The itching for me is more troublesome than the pain. I can mentally deal better with the pain but it is impossible to ignore this constant burning raw itch. I can't scratch because of the pain. It 's so sad. My quality of life has been greatly affected. I am a girly girl so I used to enjoy bubble baths & lace underwear. My favorite thing to do was dancing. My home was the place for all entertaining & social events. But all of that is a distant memory. I spend my days at home with no company other than my husband & two sons. To deal with the itching I live with ice paks in between my legs. I wake up every 2-3 hours as soon as the ice pak melts to get another so I can get back to sleep( have 10 in my freezer). I run my air conditioner all year long so that I don't sweat while I sleep. I wear cotton night shirts without underwear all day because it is just to uncomfortable to put clothes on. I hide in the house when it's warm out to avoid the sun because if I sweat the monsters get angry. I only venture out on Thanksgiving & Christmas to my brother's house because I can find somewhere private when it becomes to much & I need to be alone. When I absolutely have to go out & I pass people on the street I often wonder if that person is suffering like me or if the can see how uncomfortable I am. I suggest to those whom have not gone to the doctor but may HS & the anal/groin area is affected wash with UNSCENTED Dove, lightly moisturize with Vaseline, wear lose clothing and try the ice paks. I get the kind that parents put in lunches boxes. Be sure to wrap it in a small towel & don't put it directly on the skin. This helps a lot with the itching & the pain too. Good luck & good health!!!

Hello I have H.S. too. I have suffered from this condition for about 12 yrs now. I have learned that stress does not help. Sleep and rest helps with the pain. I of course have a problem with this because I don't like to sleep. I have soooooo much energy I run circles around myself! But I do try my best to stay positive and happy. It's nobody's business that I have this and that's how I like to keep it, but this is the first time that I have ever shared my story online with other people that suffer from H.S too. I am hoping that discussing this with others that suffer too will help me better deal with this disease. It takes a toll on me mentally and tends to make me sway away from wanting to be around people. Because people that don't have this condition just can't comprehend the pain that we suffer and it makes me very frustrated.

I know exactly what you are going through. I've been living with HS for 8 years now. It started happening after I had my first child. I have them in my groin area and they are moving progressively to my buttocks area. Tt wasn't until a year ago that I finally went to the doctor about it. I was so embarrassed due to it's location. Even before my diagnosis my regular physician would just say it was ingrown hairs or some bologne like that. I finally asked for a referral to see a dermatologist. He diagnosis me with HS on the spot. He gave me antibotics but of course they do nothing. He gave me the choice of surgery but doesn't really want me to go that route. Everyday I feel alone with the pain and never feel like I'm clean enough because of the I know it's there. It's really put me in a dark place. My husband knows of my condition and is supportive but I feel very self conscious even though I've been married to him for 8 years. I feel less of a woman and more like a decomposing corpse. I have trouble moving, sitting any kind of movement can cause a sudden shriek of pain to come busting out my mouth. There is no comfortable days and even worse for days around my menstral cycle. During these days I'm completely motionless. I can feel the inflammation building days before I start. The old and the new forming. It started with just one every couple of months but now daily. I doctor them the best I can handle and withstand but I'm constantly in fear that infection will happen in time. It truly is hard to explain to others of this condition because only a person with HS can really fully grasp how uncomfortable it feels to be in your own skin. I'm 27 years old and I'm being controlled daily on how my HS is going to be that day. It feels good for me right now to finally get this out to other fellow HS suffers. I'm so tired of doctors telling me that weight is a issue for HS suffers but I'm not obsese. It's not just a stigmata for people with weight issues. It happens to all body types. But even with weight issues how can a person physically lose weight when movement is their enemy. I fear every step that is forecasted in my daily routine. So scared that I may have a moment of pure tormoil while others are staring in confusion to what's wrong. As I've said it takes you to a very dark place. I know your pain and I am here for you.

Hi, I've suffered with hs for 24 years and I feel I look like the elephant man.. My husband doesn't even see it, he says that he loves everything about me including my hs ! Poor man.. It's a depressing condition to have and sometimes have to really have a massive word with myself when it's bad.. I feel dirty and ugly.. But i have to say not ones of my boyfriends before I got married ever said or shown that it bothered them x

i feel your pain, ive had it since i was twelve, i hate wearing vest tops too, even going to the beach and not being able to sit cross legged as someone will see all my scars and plasters on the insides of my leg, i have my exams in a month and today i cant walk as a huge boil has appeared in my groin overnight, life is very difficult, whenever iv had to go to the doctors for a breast examination or even a operation i always explain that theres plasters everywhere and scars, and they nod and agree and say 'i know' and you look at them and think 'no you dont, you dont know how it is' i went to see a top dermatologist and he gave me fucidin cream, really? hmm, ive had my rant, but its nice in a weird way to actually be able to discuss this with someone who actually does know how life is with HS, its difficult.

You should wear the same glasses your accepting man does - the ones that see beneath the surface to what really makes you beautiful. I'm sorry for the physical pain and I'd stop it for you if I could!