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've been suffering with HS since middle school. Showed it to my mother but she didn't think much of it and believed it would go away so it went untreated for a while. I haven't actually been diagnosed with HS but no doubt I have it. I've done lots of research. I know some research on the internet is not always reliable but I know what I have and HS is a rare enough skin disorder where only a few people share similar symptoms. I'm a broke college student with no health insurance I can't really afford constant check ups or surgery or antibiotics for HS but hopefully one day I can care for myself correctly. So please try not to judge me for not receiving the proper care, like I said I wish I could but it's just not plausible right now.
My flare ups have greatly reduced since middle school and high school but I'm still left with plenty, disgusting, dark marks that won't go away. Usually it's not that bad but when I shave or wear really tight clothing I get flare-ups once again. I just thought I would come here cuz I haven't met anyone who also suffers from HS, at least that I know of. I constantly feel terribly alone all because of HS. I haven't told any of my friends. I can't imagine what they would think of me/it. And I'm very devastated over the fact that I'll most likely never find a significant other. I'm such an outgoing person, and I was so ready to get out there and experience during college. Cute guys and girls flirt with me and show interest in me which makes me happy but I have to pretend like I'm not interested cuz I'm terrified for anyone to see my HS. I can't even imagine what somebody's reaction would be, it shakes me to the core, especially someone I wanna sleep with. So I am just pretty upset that HS has rendered me a very lonely life. It's crazy how just bc of these two damn letter HS I can't even have simple college sex lol or wear a fucking bathing suit and have a swim. I can barely do anything fun. Thanks for listening...
Are there people here with significant others that accept you for HS and all? Do actually good hearted people like that exist??
My flare ups have greatly reduced since middle school and high school but I'm still left with plenty, disgusting, dark marks that won't go away. Usually it's not that bad but when I shave or wear really tight clothing I get flare-ups once again. I just thought I would come here cuz I haven't met anyone who also suffers from HS, at least that I know of. I constantly feel terribly alone all because of HS. I haven't told any of my friends. I can't imagine what they would think of me/it. And I'm very devastated over the fact that I'll most likely never find a significant other. I'm such an outgoing person, and I was so ready to get out there and experience during college. Cute guys and girls flirt with me and show interest in me which makes me happy but I have to pretend like I'm not interested cuz I'm terrified for anyone to see my HS. I can't even imagine what somebody's reaction would be, it shakes me to the core, especially someone I wanna sleep with. So I am just pretty upset that HS has rendered me a very lonely life. It's crazy how just bc of these two damn letter HS I can't even have simple college sex lol or wear a fucking bathing suit and have a swim. I can barely do anything fun. Thanks for listening...
Are there people here with significant others that accept you for HS and all? Do actually good hearted people like that exist??
As for me, my HS was very aggressive in my 20's. Actually, I'm 29, but since about 27 my HS flare ups have been less severe. This sometimes happens as you get older. It may be little to no consolation to you, as it was to me ten years ago. But it might get easier. Be your own advocate. Doctors have done NOTHING for me. Your experience may differ. You went about it the right way, I think, by doing the research yourself, and perhaps finding a method of dealing with HS which helps you.
E.G., I found that eating two Granny Smith(or Red Delicious) apples a day helped me tremendously in my fight against HS. Bananas as well as their skin have been a great help as well. The quercetin in the former has been a great ally in my struggle with this malediction. A good diet, exercise and avoiding the heat / humidity as much as one can are generally good ideas...for me. You might be different. But stick with it. And keep your head up. If your friends or potential partners can't accept you as you are, then they're not friends. Period.
As far as not being able to go to the doctor try utilizing free clinics that are available depending on where you live of course. Believe it or not there are lots of free services out there for people uninsured if you know where to look.
I am 45 years old and have dealt with HS as far back as I can remember. When I told my mom about it she said my grandfather had, had it, allthough I don't think they were fully aware of what it was etc. My sisters knew about it, because I would get flare ups and have them look at them or try to pop them for me. I do agree with you that what you wear can cause flare ups. When I was working the waist on my pants was tight and would cause the sores around my waist, or it would be hot and cause them on my inner thigh. I have been to the dr for it and the dermatologist and there really isn't a whole lot they can do other than prescribe anitbiotics. I don't even bother going anymore.
As far as relationships go, yes it can be embarrassing, but someone who cares about you isn't going to mind. It's been my experience in the past, casual sex partners don't care, they just want to get laid. lol I have been in a few long term relationships and they didn't care. I am getting married this month and my soon to be husband has HS too. Yeah, so he is so sweet and understanding and if they break open he will squeeze it out. How romantic lol I used to cry about it but he has assured me that he loves me regardless and has taught me to love myself just the way I am. So yeah there are people who will accept you just as you are!!
The scarring and wearing a bathing suit, it used to bother me, but I really don't care anymore. I am not going to miss out on life because of that. It is a nuisance but there are much worse things that we could have, so I am thankful for everyday God has given me.
My most recent trip to the dermatologist she said they are doing new research on HS and its looking good, so who knows what they may come out with, hang in there. hugssss
By Mayo Clinic Staff
The following suggestions may help relieve discomfort, speed healing and prevent the infection from spreading:
Apply warm compresses. A warm washcloth or compress can help reduce swelling.
Keep the affected area clean. Gently wash the affected areas with antibacterial soap. After washing, apply an over-the-counter antibiotic.
Wear loose fitting clothes. Loose clothes and underwear can help prevent skin irritation, while tight, synthetic clothes may irritate your skin.
Lose weight. Excess weight increases the number of areas where skin rubs together for example, between skin folds causing friction, increased perspiration and bacterial growth. Though weight loss won't cure the disease, it may improve symptoms.
BUT, another, better, guy was so supportive. I have only truly shown one and explained (before I knew it was HS) that I'd always had these nasty bumps and didn't know why. He was so kind and said that anyone who minded I should tell to fuck off and leave alone. And he's right.
Now that I know what it is, it is a little less embarrassing. Because now I know I can't help it and it isn't my fault. That being said, I am in a new(ish) relationship and we have only been intimate in the dark. I haven't gained the confidence to show or explain to him yet.
So I know it's hard and embarrassing and nothing anyone should have to deal with, but finding someone who truly cares about you won't mind one bit.
I tried to take medicine but it was expensive and I ultimately decided I didn't wanna be on any lifelong or long term medicines. Anyone who I decide to be involved with won't (or shouldn't) mind.
I wish you luck and much love!