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,...

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/ Hidradenitis Suppurativa Support Group

Hidradenitis Suppurativa

poolegirl15
poolegirl15
Hi my name is Heather, and I am 23 years old I have had Hidradenitis Suppurativa for as long as I can remember, but I was diagnosed with it last week. I was so happy to go to the doctor so that I can get all better and never have to deal with the pain again, but boy was I wrong when the doctor told me what I had I was really heart broken that there is nothing that they could do, but to give me some cream that will help and then put me on long term antibiotics. I am getting married in December and I don't want to have an outbreak on my wedding day, I don't want to have to put my future husband through the days where I am feeling bad and don't want to do anything because it hurts to much to move. I am scared that it is going to get worse over the years because that is what i have read that it gets worse as you get older. I don't want to pass this down to my kids, when I start my own family I don't want days where I can't hold my child because my arm hurts so much I can hardly move it (I have already had many days like that). I am scared what is going to happen in the future with have Hidradenitis Suppurativa and what it holds for me and my future family. I am writing this because I don't really have anyone to talk to because they don't understand the pain, they don't understand that some days I don't want to be strong I just want to lay in bed all day until the pain goes away. I just want to know what I can do different to help keep the inflammation down, or just encouraging words because right now I really need them for people that understand.
starrynight07
starrynight07
Hi Heather. I understand your frustration and trust me we have all been through it. I know my HS flare ups have lessened over the years so there is hope for you too. It is difficult to get a read on how your HS will go since everyone is different. Everyone seems to have a different story and what works for them. Mine first began in my armpits and then have moved over time. Those flare ups definitely seem to be the most painful for sure. It is hard to remain positive and hopeful but over time you find things that work to elevate some of the pain. Read some of the past discussions and you might find some ideas on things you can do to change your lifestyle a bit that might help elevate some of the symptoms. Good luck and remember we are here for you.
PrettyMama
PrettyMama
I know how much depressing it can be, but don't lose hope! The flare ups can be managed with diet, stress management, tto, etc. I would recommend to avoid antibiotics. They kill good bacteria in your body that you need for a healthy immune system. Which is essential for keeping HS in check. There are lots of helpful people here who have tried various things. Learn from their experience. You don't have to do this alone.
As for your fiance, a wise person once told me that our husbands don't pay attention to our flaws the way we do. They are thrilled to get intimacy with us. The warning was to not point out your flaws to him and he won't even think about them. Like, don't say you're fat when he says you're beautiful, etc. (Just wanted to pass that along :))
PrettyMama
PrettyMama
I know how depressing it can be, but don't lose hope! The flare ups can be managed with diet, stress management, tto, etc. I would recommend to avoid antibiotics. They kill good bacteria in your body that you need for a healthy immune system. Which is essential for keeping HS in check. There are lots of helpful people here who have tried various things. Learn from their experience. You don't have to do this alone.
As for your fiance, a wise person once told me that our husbands don't pay attention to our flaws the way we do. They are thrilled to get intimacy with us. The warning was to not point out your flaws to him and he won't even think about them. Like, don't say you're fat when he says you're beautiful, etc. (Just wanted to pass that along :))
PrettyMama
PrettyMama
Sorry for the double post. Read the second one. I sound more intelligent. Lol!
chronic99
chronic99
I think you've come to the right place to find people who understand what you're going through. This stuff seems to be hard for people to get their head around who haven't gone through it. I get exaggerated pain, fatigue and all sorts of stuff that's even hard for my wife to understand after 10 years of this and it's not because she's ignorant (she's the one who made the original HS diagnosis that the doctor signed onto five years ago).

Sometimes all I can do is just sit (if I'm lucky) or lay in bed on my face and try to find something to stay preoccupied. My wife accepts that I need to do this, but it still confounds her that I could be brought down so hard by so little sometimes. Likewise it can be very hard for doctors to understand what it's like even though they're doctors. Mine says, "Do this and this other thing" and I'm just sitting there thinking, "He just doesn't get it".

I know it can get better, I'm not exactly sure why but thank God my worst flareups aren't as frequent and most of it isn't as bad as it used to be, and I know a lot of other people have gotten important improvements in HS management from different means, so please don't despair.
remanice
remanice
Wow i think it was meant to be that i read your post, I had the same issues and it absolutely sucks. Its been over a year and ive been using this product called HS Releif and it works miracles for me and my family. You should give it a try, here is there website http://www.hidradenitissuppurativarelief.com/
remanice
remanice
i hope you get better and have an amazing wedding
cvela99
cvela99
Hey guys! My name is Cindy and I've been suffering from HS for about 4 years now, I recently created a blog where I talked about how I was able to put mine into remission and everything that I've tried. If you guys want to check it out the link is : www.sweattearsandthesea.weebly.com
hope it helps!
dacosta18
dacosta18
I understand your pain completely. I am 19 years old and have a 2 year old. I was diagnosed with this condition last year and it's still been going on, nobody understand the pain sometimes I just can't get up or move and sometimes I feel like my family thinks I'm lazy most of the days I lay down but truth is my life has changed and no one will ever understand the pain it has brought me and others everyday.
haleema_z
haleema_z
Hey! Im 25 and been married for 7 years, I have been dealing with HS for 11 years. My husband has been really supportive but I feel like such a headache for him because I’m always depressed oh and having fertility issues doesn’t help. Now knowing my kids might get HS I really don’t even want to try anymore.