Any other Hidradenitis Suppurativa sufferers out there?

katatak1

I have hidradenitis suppurativa- a semi-rare (1-4% of the population- most who don't know they even have it) debilitating skin condition. I am interested in starting a group for support and suggestions. Does anyone else have it that would be interested in forming a group?

You may have it and not know. Many people are too embarrased to talk about it with their doctors. So, here is a description of the disease: the formation of chronic abceses in the apocrine gland regions (armpits, buttocks, groin, and breasts). Luckily mine hasn't moved to the breasts yet! The abceses joing together via sinus tracts and never fully heal. When they flare up, they cause soft cysts which require draining. The drainage is variable in color, thickness, and odor. It can make walking painful and exercise very challenging.

The Catch-22 about this disease is that obesity makes it worse... but exercise also makes it worse! It's degenerative, so it only gets worse as you age. This is why we have to get fit sooner rather than later! If you have this disease, or think you might (someone on here HAS to have it too!), let me know if you want a support group to discuss the trials and tribulations of HS.

katatak1

No one?

Sandra2893

Im 18, had this since i was about 10

flobeedoodle

You may have it and not know.

Many people are too embarrassed to talk about it...

No one?

I didn't know this was a real medical thing. Would a dermatologist be the appropriate specialist to visit?

pornstarzombie

I have it, have since I was about 12. It has been a horrible thing for me, and I have so many scars from trying to pop and drain the boils themselves. Very self conscious about them, they are only in the panty line region.

I have learned how to control outbreaks for the most part, and prevent them. I use antibacterial soap, and I only wear jeans or any clothes ONCE.

If I feel a lump coming on, I put Tea Tree Oil on it, and start taking turmeric capsules. I will take about three a day until the lump subsides, and I try to wear loose, baggy clothing during that time.

I'm a horseback rider, so I spend hours and hours in the saddle, with my riding tights and getting sweaty...it's definitely a struggle to control. But there is really nothing we can do about it.

pornstarzombie

I'm bumping this up, because I know there are more people out there with this. I always like to talk to people with it, see what they do to control it.

Sandra2893

ive had good and bads with it. it was REALLY bad when i first got it, it started in the groin area. Now that i think back on it i noticed that when i joined track, and lost weight i didnt really have any flare ups. After that i moved to florida (im originally from chicago) and i guess the Heat plus my weight gain made it get worse because thats when i started getting them in my arms. I never came out or told my parents about it till i was 18 (so i went through this for 8 years by myself) the funny thing is, when i was diagnosed with it the doctor told me that it would get BETTER with age, everything that i am reading says it gets worse. Anywho :] the only thing i do is use antibacterial soap which REALLY helps, i started excercising and now i only drink water which seemed to help a lot too.

pamelad77

Only just found this thread.
I was diagnosed end of last year with this during my first episode, doc gave me a 3 month course of antibiotics which didn't do a thing. Luckily it went away on its own, but 3 months down the line it's back.
Just ordered some zinc glucanate as some studies have shown that 90mg a day can help it into remission (zinc becomes toxic at 1000mg so long way off that!).

If anyone else has tried anything that helped, please let me know!

Sandra2893

One thing that REALLY helped me was cutting out refined sugar. If i HAD to sweeten something like my tea i would only use raw sugar. I haven't had a boil in my arm for about a month now. I kinda caved in at some point and started drinking a lot of kool-aid that had a lot of white sugar in it, after that i got a really bad boil on my groin so im guessing that it definitley had to do with the sugar. Im gonna try a detox tea this week because i heard that can really help to.

pamelad77

Just thought I'd give you an update as I've been taking zinc supplements for about 3 weeks now. I'd read somewhere on Internet that it can help with HS and numerous other skin complaints.

Well, Anyway, I started taking them during the middle of a flare up. Previously, the cysts, boils, whatever you want to call them, always shrank down to a really hard lump under the skin where it had been which then took months and months to go.

This time, it shrank to a hard lump, and I thought here we go again, but it's already gone. In just under 2 weeks.

Obviously, I don't know whether this was purely down to the zinc or whether my new diet has played a part, but I'm definitely sticking with taking the zinc o n a daily basis ad infinitum now!

If anyones interested, I've been taking a 70mg zinc gluconate along with my multivitamin which has another 15mg in it. I'd read that the ideal dose for skin issues is 90mg a day.

pamelad77

http://robbwolf.com/2012/04/09/putting-hidradenitis-suppurativa-remission-paleo/

Fund this today, I'm going to give it a go. Cutting out nightshade foods. For me, that's only potatoes and tomatoes, so shouldn't be too hard.
Will let you know how it goes!

CharlieBarleyMom

pamelad77 - thanks for posting this. I have suffered through this for 30 years now...sometimes really bad where I couldn't even wear clothes, sometimes less bad when I just couldn't walk (boils on thighs), and sometimes as if in remission (yeah, got fooled it was gone!) for a few months. Even when it is at it's least bad, it is still a pain in my butt (sometimes literally!) because I have small pimple-like breakouts on my bra-line. (great for dating and bathing suit wearing!)

I am reading this article now and also wanted to note that I've been trying to eat as many days of raw foods or vegetarian as possible, even though I am not a vegetarian. I've added ground flax seed and chia seeds into my daily diet because they both have skin rejuvination properties... I am ever hopeful!

Depression set in a couple of years ago (well, actually, I think I finally GAVE IN to the knock at the door that's been there for years) and it took MFP to break me out of it... I now have hope to living a normal life -- really believe that food is the answer here.

CharlieBarleyMom

If you're going to go without the nightshades don't forget the spices too... which means most of the Mexican food you might eat due to tabasco, chili pepper, chipotle pepper, and look at paprika sitting out there too!

I'm definitely running a test... at least 1 month (and let me tell you how hard this is for me!). My salad generally have a HUGE amount of sweet peppers, yellow, red, orange... no green because they're not so sweet for me. My salad also gets tomatoes when I'm in the mood. My tastebuds BEG for Chipotle pepper and Chili pepper seasoning! No taco sauce. No ketchup (easy). No tomato sauce on pasta (again, easy). But OMG, no eggplant? WTF will I do for the wonderful grilling season that is now upon us and with all the eggplant I planted??????? I hope this works... because I've been dealing with this for 30 years now... but Oh my, I will miss eggplant.

pamelad77

It should be easier for me, I hate peppers, and rarely eat Mexican or Indian food, so the. Spices aren't an issue.
I do like my potatoes, especially baked in their skin in the oven, so that will be a toughie!

My main problem is that I've been eating lbs and lbs of cherry tomatoes since I started my diet, as a great thing to pick at during the day!

CharlieBarleyMom

If any of you have decided, after reading the primalgirl blog, to take nightshades out of your diet... beware potato starch and potato flour. I don't know if this is in response to gluten-free lifestyles or whether it has always been this way because although I read labels previously I was never concerned as deeply as I am now with the natural ingredients!

I have had to clean out my refrigerator and cupboards due to this change but I'm pretty much willing to try anything that won't leave more scars (yes, I've had the surgery once but never again) to put this nasty thing into remission.

It would be cool if it is really true that it goes into remission by itself when a woman is menopausal. My body has been flirting with menopause for 3 years now... Although I am just shy of my 48th birthday, I would WELCOME menopause anyway because I never wanted the possibility of passing this nasty disease to my children. (and I've come to know myself so well over the years that I just am so glad I didn't have children anyway!)

Ever hopeful of a remission, or cure (yeah right!). Stay strong folks!

coombsy87

Great to hear some stories about your struggles. I too have this skin disease and it is very painful. Since being on MFP and dramatically increasing exercise it has gotten worse. I'm continuing to see doctors to try new treatments, but don't feel very hopeful! It's apparently quite common in uk! Nice to know there are others out there

CharlieBarleyMom

I am at 3 weeks with cutting out the nightshade family of veggies and spices with no change ... I am going to go at least another 10 days which will take me to 1 full month (April 20-May 20)... Unfortunately for me these do not seem to be my trigger.

I quit smoking 3 years ago... nothing changed as far as HS.

I never tried to relate this to a specific food before... and I didn't get it at puberty like many other girls... I didn't get it (it didn't shine through) until just before my 18th birthday.

I do not know which food to try next to remove from my diet... refined sugar is as good as anything else but I don't believe that is the problem due to the fact that I ate sugar as a child and this never appeared.

I may try beans. I love black beans and kidney beans and great northern beans and chick peas and.... on and on... but if that is the culprit I will live without.

sl1ngsh0t

One of my best friends has this condition, too. I empathize.

anj911

I have this too, and have done for 17 years since my daughter was born. It makes exercising tricky as being hot and sweaty makes the condition worse, and is also very painful to move certain ways at times. It's mainly under my arms that are affected, but I have occasional flare ups elsewhere.

I've had various treatments, lotions, potions etc, but nothing makes much difference. Tried homeopathy and aromatherapy too but with limited success. I have found that being stressed makes it flare up quite badly. At the moment I am on a second year long course of antibiotics, it seems to keep the condition under control to a point, with just a couple of problem areas getting inflamed every so often.

Thanks for posting this topic!!

Molissa08

I have this condition too and saw a doctor who gave me antibiotics, but it didn't seem to help. I also tried laser hair removal - which I heard has helped people - but that hasn't helped either. Thanks for starting this thread, as this is an embarrassing thing and I don't talk about it to anyone.

Superstar_81

I have this as well it really is the most horrible thing!! Feels like a big long cycle of antibiotics and pain!! I always think antibiotics are ok but they dont get rid of the pain!!

I go to a beauticians for waxing and that helps abit I think, she also told me to get a skincare product called Tendskin which I use faithfully, recently I ran out though and yep...a big abcess under my arm appeared. Ended up having to go to A&E after 3 days cos it was so painful and am still getting it dressed now!! Total nightmare cos you cant do any exercise when you have one!!

Thanks so much for the thread, I think it helps to know that Im not the only one lol xx

adreddick

bump

pamelad77

Cutting out nightshades doesnt seem to be helping me either. Oh well, another theory tried lol.

My doctor has referred me for surgery to have the affected area cut out, but really not sure I want to go down this route. Anyone else had surgery?

underthecherrytree

I too have this disease. I was diagnosed a year ago. I try not to read too much about it on the internet or google pictures because I end up in tears thinking that my life is going to be terrible. I get the cysts in my armpits but they never form heads or drain thankfully. My dermatologist did give me Doxycycline 100mg to take when I have flareups. I am actually supposed to take it every day but I don't. I will only take it when the pain gets bad or I have a large one and then the Doxy gets rid of it within 2-3 days. I am praying that my disease does not get progressively worst. Would LOVE to talk to others about this disease as I do not know anyone else with it.

katatak1

Holy crap, I had no idea that many of you responded to this post! I'm sending out friend requests to all of you! Would any of you be interested in a support group?

katatak1

ive had good and bads with it. it was REALLY bad when i first got it, it started in the groin area. Now that i think back on it i noticed that when i joined track, and lost weight i didnt really have any flare ups. After that i moved to florida (im originally from chicago) and i guess the Heat plus my weight gain made it get worse because thats when i started getting them in my arms. I never came out or told my parents about it till i was 18 (so i went through this for 8 years by myself) the funny thing is, when i was diagnosed with it the doctor told me that it would get BETTER with age, everything that i am reading says it gets worse. Anywho :] the only thing i do is use antibacterial soap which REALLY helps, i started excercising and now i only drink water which seemed to help a lot too.

Wow, suffering alone of 8 years?!? The pain and shame must have been overwhelming! I'm glad antibacterial soap helps you. It doesn't really seem to help me But climate definitely plays a role. I got so few flares when I lived in the mountains. Low humidity and the temp rarely got above 80.

katatak1

OK, I think I managed to get a friend request out to everyone. I might have missed someone. If I did, please message me!

I wanted to say one other thing that's really, really exciting to me! I met someone from NORD (National Organization of Rare Diseases) who said they have a VERY promising treatment for HS that they are starting clinical trials on now. They have done trials in Europe with very good success. The down side is that it is a long treatment process, but the upside is the disease goes into a very long/potentially permanent remission.

It's similar to chemo. It's a regular (not sure if daily) procedure where some concoction of medicine is fed through an IV. The whole process takes about 6 months, but then you should be in remission! I'd be willing to give up 6 months of my life to this treatment if it meant my quality of life would improve and I would never need surgery

I can get more details for you all. I have her contact information plus more information on my computer at home. If any of you are in the DC area (or willing to travel), I believe the trials are taking place in Bethesda, MD (just outside of DC).

flobeedoodle

How bad are these boils? When I get a boil, I just go to TSC (Tractor Supply Company; they sell veterinary supplies,) buy some sterile large gauge hypodermic needles, and drain them. Once drained, mine don't hurt very much. I've had ones bigger than a marble, smaller than a ping pong ball, and after they "subside" I am left with what seems to be hollowed out pocket inside my body. I also get very small ones that seem to have tubes running out of them, further into my body. Does this sound familiar, or do I have something else going on?

katatak1

How bad are these boils? When I get a boil, I just go to TSC (Tractor Supply Company; they sell veterinary supplies,) buy some sterile large gauge hypodermic needles, and drain them. Once drained, mine don't hurt very much. I've had ones bigger than a marble, smaller than a ping pong ball, and after they "subside" I am left with what seems to be hollowed out pocket inside my body. I also get very small ones that seem to have tubes running out of them, further into my body. Does this sound familiar, or do I have something else going on?

That definitely sounds like HS. Go to a dermatologist. They are called abscesses, and it's basically an infection of the hair cells within the apocrine glands. Once they are drained, they shouldn't hurt, so that sounds right too. They vary in size, some growing as large as a baseball. That hollowed out pocket is the abscess. The "boil" is simply all the pus and blood that was hanging around there. Those tubes you are referring to are called sinus tracts, and they are part of what makes HS suck so bad. In effect, the abscesses never really heal. The tracts start to connect them all, so when one flares, they all get re-infected. I think I sent you a friend request. Shoot me a message, and I'll invite you to the support group. Or, you can search for it. It's open to all. It's a tough disease to live with, but having a good dermatologist on record is a good start to maintaining the disease. For many, they've had good success with antibacterial soap. It doesn't help me, but a lot of people find relief from it! Let me know if you have any other questions

CharlieBarleyMom

Cutting out nightshades doesnt seem to be helping me either. Oh well, another theory tried lol.

My doctor has referred me for surgery to have the affected area cut out, but really not sure I want to go down this route. Anyone else had surgery?

I had suffered through this for 27 years before I finally decided to have one CUT OUT by a doctor... and I will NEVER do it again. I now get one ON TOP of the scar from the incision and stitches... I cannot drain it when it is "ready to drain" because I can't get the right hold on it ... yes, sounds gross but we all know the truth about this...

I does truly depend on what stage you are in though... I believe mine are mostly stage 2... I've seen pictures on the HIDE North America page that make me cringe with the pain these people must be in. I know how mine hurt and I rarely have any that look like those.

Now, 30 years into it, I get a few on my thighs, mostly they come on my underwear line and my bra line. And then they travel... yep, horrible.

Before I had them on my breasts it was easy enough to say that they were ingrown hairs gone wild... but a lover gets a bit put off when you have "ingrown hairs" on your breasts... sad to say that I don't take many lovers due to this... okay, I don't even put myself out there because I don't want to have to explain this BEFORE going to bed with someone. Horribly embarrassing.

Yeah, I got off topic there about the surgery... sorry. I say no to surgery. That's my opinion though... check out the HS websites to see how others have faired.

katatak1

Cutting out nightshades doesnt seem to be helping me either. Oh well, another theory tried lol.

My doctor has referred me for surgery to have the affected area cut out, but really not sure I want to go down this route. Anyone else had surgery?

I had suffered through this for 27 years before I finally decided to have one CUT OUT by a doctor... and I will NEVER do it again. I now get one ON TOP of the scar from the incision and stitches... I cannot drain it when it is "ready to drain" because I can't get the right hold on it ... yes, sounds gross but we all know the truth about this...

I does truly depend on what stage you are in though... I believe mine are mostly stage 2... I've seen pictures on the HIDE North America page that make me cringe with the pain these people must be in. I know how mine hurt and I rarely have any that look like those.

Now, 30 years into it, I get a few on my thighs, mostly they come on my underwear line and my bra line. And then they travel... yep, horrible.

Before I had them on my breasts it was easy enough to say that they were ingrown hairs gone wild... but a lover gets a bit put off when you have "ingrown hairs" on your breasts... sad to say that I don't take many lovers due to this... okay, I don't even put myself out there because I don't want to have to explain this BEFORE going to bed with someone. Horribly embarrassing.

Yeah, I got off topic there about the surgery... sorry. I say no to surgery. That's my opinion though... check out the HS websites to see how others have faired.

Taking on new men is certainly one of my fears. I've been with three men, one who was with me when I found out, one who already knew (long-time friend tuned bf), and one who I was lucky enough to not be super-flared when we got down to it I wanted to explain the situation before we got serious or he developed too deep of feelings, so at about 2 months in, I explained what it was (he noticed but didn't say anything), told him the typical prognosis, and explained that I understood if he didn't want to be involved anymore. It's a messed up process, it's like I have an STD or something, only it's not contagious...

I haven't had any surgery yet, but I'm really hoping this new treatment I posted about works and gets publicly cleared. Going in for 6 weeks on IV treatment is worth it for a significant remission!