Welcome to the Hidradenitis Suppurativa Support Group!

katatak1

Hi All,

I'm so excited that you've decided to join. I don't really know what I envision for here, but I think it would be really good to have a place where everyone knows what you're going through. Losing weight is extra hard for us because it can cause flares. So anyway, whatever you guys want to talk about, here's the place!

I don't intend to do a bunch of moderating. I plan to read each post (I think we all know this will be a small group, so that's feasible), but this will be very lightly moderated. Feel free to send me a message if you have any questions. Otherwise, introduce yourself!

katatak1

I'll start. My name is Kathleen. I am 26, and I was diagnosed 5 years ago. I'm in stage 2, and I'd like to stay there as long as possible. My treatment method is usually to do a daily check-up and drain any cysts/boils/whateveryouwanttocallthem that show up. It seems to do the trick alright. I did get my first abscess on my breast a few months ago. That really bummed me out. I was hoping it wouldn't get there too. It's already on my: armpits, groin, and buttocks.

I also wanted to mention, there are clinical drug trials going on for a very promising treatment. It's been shown to be very effective in Europe. Keep up hopes guys! We are not forgotten

EDIT: Also, if you want to be a moderator or anything, feel free to message me!

CharlieBarleyMom

Hi. My name is Peg - I am 48 years old and have had this for 30 years now. I am sure I had it diagnosed about 25 years ago but the doctor didn't take the time to tell me anything about it... just sent me to another doctor to have it drained,

I had it start on my inner thighs and thought it was just ingrown hairs.

I was recently on Tetracycline for a year to no avail.

I am in generally stage 2,,, I have had one surgery and will never do that again.

Recently saw a blog about the Nightshades possibly being the trigger... not for me unfortunately. Not that I want to give up peppers and eggplant and tomatoes for the rest of my life, but I'd like to be free of this.

My doctor just ran blood tests and found that I have started menopause... hopefully this means that I will soon be past this.

I am currently trying "dairy free" to see if something dairy-related might be the trigger for me.

Nice to meet all of you!

underthecherrytree

I am Cassie.
I am 23 years old and was diagnosed about 1.5 years ago.
I am in between stage 1 and stage 2. I do get boils and quite often in the same spots but they have never opened and I do not have sinus tracts. I pray that it stays like this.
My Dr. has me on Doxycycline which I am supposed to take everyday but I don't. I only take it if I get a really large boil and even then it is only for a few days to get the size down.

Superstar_81

Hi I'm Elinor and im 31. I got my first abcess at 16 and eventually diagnosed around ten years ago.
I mainly get the flare ups under my arms and my groin. My doctor would not put me on a long term antibiotic so whenever I feel a flare up coming on I have to return for a prescription. Im hoping to go and see a dermatologist soon though!
Recently I was at A&E to get an underarm one lanced (total agony...will not be doing that again LOL) and he told me about an op to remove visibly infected skin but warned that I may experience some restriction of movement aaaarrrgghh!!
In addition, my beautician told me to use a product after waxing called tend skin which helps to prevent ingrown hairs and they do not seem to be as frequent-yay!!

Thanks a lot for starting this group, I think it helps to chat to others who know what you're going through!! Great to meet everyone :-) xx

shannonewallace

Hello everyone, and thank you Kathleen for starting this group!

My name is Shannon, I'm 30 years old. I'm not sure how long I have had HS because I believe my long term use of Advair for asthma hid most of my symptoms. After my weight loss I was able to stop taking the Advair about a year ago and that's when my symptoms started to really flair. I currently don't have any treatment for my HS, and recently my symptoms have gotten worse.

When I moved I never found a new doctor and usually drive an hour to my primary physician, but that's getting to be too much especially when I am sick. My current doctor also doesn't know that my HS is as bad as it has been since I don't see him often. The problem I am having is getting the courage to find a new doctor and telling him about my HS.

katatak1

Hi I'm Elinor and im 31. I got my first abcess at 16 and eventually diagnosed around ten years ago.
I mainly get the flare ups under my arms and my groin. My doctor would not put me on a long term antibiotic so whenever I feel a flare up coming on I have to return for a prescription. Im hoping to go and see a dermatologist soon though!
Recently I was at A&E to get an underarm one lanced (total agony...will not be doing that again LOL) and he told me about an op to remove visibly infected skin but warned that I may experience some restriction of movement aaaarrrgghh!!
In addition, my beautician told me to use a product after waxing called tend skin which helps to prevent ingrown hairs and they do not seem to be as frequent-yay!!

Thanks a lot for starting this group, I think it helps to chat to others who know what you're going through!! Great to meet everyone :-) xx

I've never heard of tend skin, but I use bliss ingrown removing pads, and they work great. How much does the tend skin cost?

katatak1

Hello everyone, and thank you Kathleen for starting this group!

My name is Shannon, I'm 30 years old. I'm not sure how long I have had HS because I believe my long term use of Advair for asthma hid most of my symptoms. After my weight loss I was able to stop taking the Advair about a year ago and that's when my symptoms started to really flair. I currently don't have any treatment for my HS, and recently my symptoms have gotten worse.

When I moved I never found a new doctor and usually drive an hour to my primary physician, but that's getting to be too much especially when I am sick. My current doctor also doesn't know that my HS is as bad as it has been since I don't see him often. The problem I am having is getting the courage to find a new doctor and telling him about my HS.

How does asthma impact HS? I have asthma too, so any info you've got on it, I'd love to know.

Be courageous! This is your health here! Nothing to be ashamed about. It sucks, but it's part of how your body works. Have you looked to see if there's a specialist in your area? I know there are only a few in the country but it's always worth looking into.


Thanks so much for joining, guys. I'm super happy that we've all found eachother and have a safe place to talk about our illness

shannonewallace

I’m not sure how asthma really effects HS, but some of the medications you take for asthma can, like steroids or cortisones.

CharlieBarleyMom

I've only ever felt out of sorts with a doctor about the HS once... and that was a gynecologist (a jerk) -- he didn't say anything to me but was talking to his nurse and made a snorting type of sound to point it out to her and she had never seen it or heard of it before.

Most doctors here in PA that I have seen know exactly what it is when I start explaining it to them. Still, they don't have any idea of how to keep the symptoms down. They only have solutions for AFTER it flares up bad.

I quit smoking 3 years ago believing that was a cause or trigger... because my doctors (and much literature I can find on it) says that it is true... but not the case for me at least. Didn't change it one bit.

I have also recently heard that it is related to hormones... I've just started menopause so I'm looking forward to less breakouts. (otherwise I have no clue.)

I usually just drain them (allow them to drain when I can) and use a heating pad to bring it up if necessary. I take ibuprofen to keep the inflammation down and the pain down as much as possible. For me, the ones on my thighs have been stage 1 for the past 10 years or so... every now and again I get one that inhibits my walking. Mostly it is on my bra line now... that definitely hurts. The ones under my arms are mostly like white heads these days... sometimes I get one that goes further but not too often... again, the past 10 years maybe.

katatak1

Alright guys, we've blossomed to 14 wonderful members! Only 5 have introduced, though... So get on here and tell us about yourself!

katatak1

I've only ever felt out of sorts with a doctor about the HS once... and that was a gynecologist (a jerk) -- he didn't say anything to me but was talking to his nurse and made a snorting type of sound to point it out to her and she had never seen it or heard of it before.

Most doctors here in PA that I have seen know exactly what it is when I start explaining it to them. Still, they don't have any idea of how to keep the symptoms down. They only have solutions for AFTER it flares up bad.

I quit smoking 3 years ago believing that was a cause or trigger... because my doctors (and much literature I can find on it) says that it is true... but not the case for me at least. Didn't change it one bit.

I have also recently heard that it is related to hormones... I've just started menopause so I'm looking forward to less breakouts. (otherwise I have no clue.)

I usually just drain them (allow them to drain when I can) and use a heating pad to bring it up if necessary. I take ibuprofen to keep the inflammation down and the pain down as much as possible. For me, the ones on my thighs have been stage 1 for the past 10 years or so... every now and again I get one that inhibits my walking. Mostly it is on my bra line now... that definitely hurts. The ones under my arms are mostly like white heads these days... sometimes I get one that goes further but not too often... again, the past 10 years maybe.

So it sounds like its started to improve as you age? I hope that fewer hormones running around helps it for you! If so, then bring on the early menopause! I've already decided no biological kids because I don't want to pass this on...

Superstar_81

Hi, just been reading soem of the other posts- asthma link? I have asthma too, not badly but take inhalers when I have a cold etc! interesting!!

Some doctors are awful...I saw a dermatologist in Glasgow once and when I asked "Why me???" (lol) he kind of snorted and said, well you rarely see them on thin people....not what I wanted to hear haha! I also stopped smoking previously and it did not help, no better no worse grrrr! I reckon its def hormone related (for me anyway) as it is always around TOM- pah! :-)

Kathleen- the tend skin costs around £8-10 per 4oz bottle, I get it from Amazon as none of the local beauty salons sell it, but seems to work great....unless there is a bit of broken skin then you will definately know all about it haha!! Ouch!!

El xx

bayoubay21

I was told I had HS about 2 months ago. The last few years I was pretty sure I had it. Just to ashamed to show it. Even when I did the derm said mulit sinus tracts. Then I had a bump the size of my nipple on my areola. I was pretty sure it was a cyst and it was. It did not drain like the rest. But that's when she told me I had HS. I think she just wanted to see it in another area. I've suffered from a landmind of cyst on my back over the last 8 years.

Looking back, it started when I was 15 or 16. I had to get an ovarian cyst removed. Second largest the doctor has seen to this day. I'd go for check ups and I showed him. He said it was from saving. It would go and come a few times a year. In my mid 20's it reoccured more and with more bumps. I want to try and keep it as it is. I could not think of the pain if it got worse.

I'm not in a big push to lose weight. I used to be in the navy and pretty healthy. But I suffered and still do from heel spurs. Which I'm sure weight doesn't help. It took 3 years to get that at bay. And if I walk or wear certain shoes I suffer from pain. Taking a few days off plus holiday time and keeping my food elevated was the cure. So I'm limited to exercise. So maybe I can lose some weight by eating more salads and less junk. It's just hard. I'm from Louisiana and we have such great food. I've read a little about nightshades and driggers. And well I eat just about all of them. I think it said smoked meat (we make are own smoked sausage), flour (all roux's based food, red meat, fried items. I'm new to learning about all this. So I haven't tried not eating them. I would find it too hard. I just bought some supplements: tumeric and some others. I'm just going to try and improve my lunch diet of salads. And portion my meals better when I get home. I also will try to start walking down the road when I get home. Sadly, I was running 2 miles 3 days a week prior to the heel spurs. I had a skinny friend that did not want to stretch prior to running. So i would quickly try to get some stretches in. I was most likely 195-200 pounds then. But I'm tall. Now I'm bigger than I have ever been in my life.

katatak1

Thanks for the info on Tend Skin! I think that's cheaper than the stuff I use, so I'll buy some when I run out!

Bayou, eeecchhhh, on the nipple? That sounds soooo painful. The only one I've had on my breast so far has been on the underside. I want to lose weight, but the struggle is losing it in such a way that I don't cause a damn flare. And that is especially hard.

bayoubay21

Well, I tried a few things before. Just never stuck with them. I bought some GNC Lean shake, lean bars, and some lychee-mango dietary supplement. The chews have green and black tea leafs. The GNC lean chews are just fiber and caffine. I have gummi fiber chews. I'm cutting out my breakfast. I know people say it's so important. But I eat an biscuits, pancakes etc. I do like eggs. Just don't have the time in the morning. Lunch will be salads or sandwhiches. And I will have my normal dinner. So it's not full blown. But I don't want to make it to hard that I'll just give up. After seeing some results I may try or encourage myself more. I also have to quit smoking soon. Which I'll go back to vaping soon. I got put on a horm. bc. I'm trying the tumeric pills now. Only on day 3. But I had some bumps that never flare, just chilled. The pill have made 2 of 3 raised. One drained this morning. Nothing like the normal. It was more like a zit dicharge. clear fluid and blood. It does seem the more weight I gained the worse this condition has gotten. I was in the Navy. I enjoyed short runs. But have 3 years of heel spur pain, I can barely find comfortable shoes. Luckly my supervisor is out of town for 2 weeks. Normally we go eat everyday.

annabelle1113

Sweets, take it from me...take the medication regularly or not at all! Just speaking from experience. Future go's at it will not be successful. I made that mistake

annabelle1113

Hi everyone! I am Anne, I'm 28, and have been suffering from HS since I was 13...diagnosed only about six years ago. When I was younger, they just told me that it was a staph infection. Nope! Wrong! It was great to find a derm who knew what it was, but crushing to know there is not much to be done about it. I've pretty much suffered from at least a sore or two at a time for the last 15 years. I know that it could be much worse, but sometimes I like to have a small pity party! I know that my weight is not the cause...I had the sores long before I gained. But, it is in my family (both parents have flare-ups), so it may have been passed down.

I need a support group for this! Sometimes the pain and the mental anguish from it just sucks.

annabelle1113

LOL....I'm 29. Oops! Haha.

katatak1

Welcome aboard Anne! We're glad to have you I can't believe they missed your diagnosis for so long! I took to the internet and figured it out for myself. Went to the derm, and without prompting (i.e. I didn't tell him I thought I had HS), he confirmed my diagnosis. I'm glad you've finally found a good derm! I wish I had a decent one, but I can't seem to find one in the area

MyTurnNow2018

Hey everyone!

My name is Amy. I am 29, and was diagnosed 3 years ago, and am in stage 2. Although I KNEW for years that I had something serious going on , and pressured the doctors to tell me it was more than the heat, my diet or shaving, I was misdiagnosed with MANY different things. It was a relief and a huge crush to finally be properly diagnosed. It took me a few days to truly say it out loud and feel anything. Though it is not terminal, it is a sentence for life, and that is never easy. No matter what it is, to know something will change your life forever, and unpredictibly hinder your everyday life is scary.

I used to be a competitive swimmer, and I was damn good:) That all stopped when I was 16 and got into a wreck and broke my collarbone and sternum. I started to gain weight slowly after that, and my skin was really bad. I would get 2 or 3 cysts a month through my early 20's, and the doc's would always tell me it was staph, or cause I shaved. I would try everything from not shaving to not eating, nothing helped.

The HS truly was at its worst about 4 years ago, right before my diagnosis. I was getting some flare ups that were so major, I was not able to work or even get out of bed. I would end up in the ER a few times before I went to see a specialist. Even though my own self diagnosis (made after years of researching different skin conditions...) would prove itself correct, it was a sad day when I went to the doctor. She tried antibiotics, which only caused more issues with my body. (thrush ..etc) Then creams. They would help for a while, but never a solid solution. Now, it is mostly trying anything I can to see of it has any effect. I have had luck with adding Tumeric to my diet and taking it in pill form as well. Seems that I am just ever so slightly LESS red and sore in places. My worst area is my thighs. I have bad flare ups on my under arm and breast as well. The scars are the hardest for me , I think. Sometimes I'd just really like to wear a tank top or bathing suit with OUT feeling like a monster.

I find myself tearing up reading other posts, knowing what you all must deal with. I hope and pray more people educate themselves on things like HS. There are a lot of people that suffer from this, and I am glad we at least have the internet so that we can have eachother. Hope everyone is well, and has a beautiful day