Any other Hidradenitis Suppurativa sufferers out there?

Is there a group you created? I have had it since I was 17. It's horrible.

Thanks for starting this thread/topic. I'm a HS sufferer for the past 25 years. I've tried a lot of things with limited or no success. Antibiotics, soap, laser, surgery, micro dermabrasion, creams, gels, home remedies, sun. I have had doctors shrug their shoulders and say "I can't help you" or "I can't fix that".... denied insurance coverage because treatment is categorized as "cosmetic".

I have found over the years that it's better for me not to talk about it to most people, because, while they have good intentions, their casual advice only reminds me of how clueless they are about the disease, and how difficult it is to treat. i.e. "Have you tried Proactive?, it really worked for my friend's pimples." "Have you tried ____ soap?" "drink more water!" "you're not washing correctly". ugh!!!! I know they're only trying to help, but this kind of talk only adds to the depression. I'm sure many of you can relate.

It's a little comforting to finally find other people with the same problem that I have had my entire adult life. I will be trying some of the suggestions that I have read here. Thanks to everyone who is participating. I will check out the group.

I am a sufferer of HS and didn't know that I had it until I tried to "lance" one one the cysts/boils myself and ended up really sick with a staph infection.

I know we all have this condition but I say, we rock! we have suffered and not given up. We won't let this stop us. We love ourselves and have high self esteem. There is no need for us to hang our heads in shame.

Hello All. I've had HS for 20 years. How horrible. It has brought me to the depths of depression many times. I accept it now, but at times it still does affect me. The ONLY thing that has ever worked to control it is laser. In 2004 I had 3 sessions of IPL to my groin area and was in near remission until about a year and a half ago. It even helped with the scarring. However, the past year it has been out of control, especially the last six months. I have had a huge boil under my left arm that has not subsided, tried epsom salt, minocin oral abt, lancing, it's just refusing to burst. 3 days ago I went to Whole foods and got Neem oil. It stinks like crazy but I put it on when i get home and this huge difficult boil has been draining nonstop for 2 days. Its about half the size. It just may be working. This boil has been there about 9 months. I also bought a handheld laser from sephora. Laser hair removal laser. I have been zapping my inner thighs and underarms for a few weeks. It didn't touch the huge boil, but it did make the smaller boils go away the next day or so and has lighten the scars significantly in just a few weeks. The blackheads are still there, dozens of them, but they are small and I can pretty much dig them out on my own. I will repost later on the neem oil. But Iknow that is what is finally allowing this 9 month boil to drain. As big as it is it has never burst on its own. I stink like neem, but excited that something may work.

I'm so glad to find that I'm not the only one with this incredibly embarassing, often dibilitating disease to deal with. Up until now, I hadn't told anyone about it, I had just been quietly suffering with weird "pimples/ingrown hairs" since about puberty hit (10 years now). They started at my panty line once in a great while, and now they've migrated to within my pubic hairs to a rate of about one flare up a month. My flare ups usually last about a week and make moving almost unbearable as the drainage tends to make my panties stick to the draining boils. I can never manage to get into my OBGYN in time so I haven't had any sort of testing done or anything. I'm just recently really starting to research this disease while coping with the fact that I do in fact have a skin disease and it's quite a depressing situation to come to grips with.

For a while I was able to manage it, but everything flipped upside down when a lover at the time actually said to me "I can't keep seeing you. You said you washed down there, but there are those pimples and it really grosses me out." I was absolutely devastated to the point where I have been refusing lovers for about a year now. My weight has ballooned which makes the condition worse and I'm starting to see pimples under my breasts which I'm hoping beyond hope are not boils. Having a sort of support group would be immensely helpful to have people to talk to and gain tips from.

As of right now I've been reading a bit on being gluten-free to cope with the disease and I'm thinking of giving it a try. I don't know if my insurance covers a dermatologist and I don't know if I'll be able to see one, but I figure going gluten-free will at least help with weight loss, so perhaps I'll see some solace at least. Not sure if I'll ever see full remission but I'm about ready to climb out of this hole and do something before I go truly insane.

I know what all of you are going through. It is completely ridiculously horrible.
I think I have finally found out what is causing it (for me anyway) - it's gluten.
I have tried everything under the sun to get rid of it. Nothing has helped. Nothing.
Turmeric and zinc, helped a little but not much.
Taking four and five showers a day. Nothing. Antimicrobial/Antibacterial surgical grade soaps/cleaners did not do a darn thing.

It is still early stages for me, I have only recently gone completely gluten free but already the pain and the boils have subsided by about 80%. And these are boils I've had for years. Not days, not weeks, not even months, but years. I've read up on it A LOT and some people don't respond completely to going gluten free though it does help a lot others have to get rid of nightshades (potatoes/tomatoes/peppers/eggplant)
Like I said, it's early stages for me but nothing and I mean NOTHING has helped as dramatically as going gluten free has. I am going to eliminate all nightshades as well, and then try to reintroduce them one at a time to see if any of those foods are off limits to me as well.
Going gluten free sucks. It's difficult. It's annoying. But if you truly suffer from HS it's completely blissfully worth it.
I've recently lost a lot of weight. I was down to 137 (I'm 5'5") and in the first five days of eliminating gluten from my diet I lost about 5 pounds of water weight.
And yes, I was one of those people who did the eye-roll when I heard the term gluten-free. I thought unless you had Celiac's disease you were just buying into all the hype. I even started to eat whole wheat pasta (and I eat a lot of pasta) and that was the worst thing I could have done. (Remember, for those without a gluten intolerance it is perfectly fine to eat whole wheat stuff, I'm not knocking it in the least.)
I came up on a comment by a woman who said she stopped eating wheat and it helped her, so I though, what the hell, I'll give it a try. The only thing I did was substitute my whole wheat pasta for gluten free pasta (but kept eating everything else I used to eat) and after just four or five days there was a dramatic improvement.
I don't buy any gluten free brownies/pancakes/muffins/donuts because the stuff they replace it with is not something I want to eat. Instead I just eat things that are naturally gluten free. Veggies, fruits, meats, rice noodles, etc.

If you are suffering from HS - I have been suffering from it for at least 15 years - try to go gluten free. Try it for a week, two weeks. You really have nothing to lose. For me, I'm getting my life back.

Fellow sufferer here. This is a very debilitating condition for me that I've had since about the age of 12, and what saddens me is that there is so little research into it. The information I've found that is the closest to scientific is this: they now theorize it has something to do with the health of your gut, and having a leaky gut, and that it can be controlled to a large extent by repairing the gut and eating a special diet. I'm not a great believer in "cut all these things out" type diets, but I find when I DO do the autoimmune protocol at the link below consistently over a few weeks, I see a much lowered incidence of new cysts and a healing of existing ones.

http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

I've had this for a couple years already. That I've noticed. This severe. And had no idea what it could be. Thought it was just bad hygiene. Lots of doctors thought it was fungus first. Prescribed fungal cream antibiotics, big guns as well according to some doctors, I have public aid so it was so difficult to see a dermatologist that accepts that damn insurance. I go to advocate christ medical center in oak lawn illinois. I decided to check out loyola hospital and they seen me earlier than December. Like most christ doctors. He finally suggested I use some acne bar soap clindimycin I believe is the spelling. Probably not. But some topical solution and some other antibiotic along with vitamin c. It's obviously not working. It seems to be somewhat healing under my arm but I think it's just me hoping for it to heal. I just woke up today with one near my groin area and it's extremely painful. I have them under my stomach fold as well. Those are worse than the groin area. Waking up is the worst part due to pressure on the existing boils and new boils during sleep. I have holes in my skin as well. It's such a depressing thing. Embarrassed to talk about it too. Didn't know this many people had it. I guess a big time severe diet is what's needed. I drink lots of soda obviously overweight. Hardly any water. Only sometimes. And when I do it's a lot and then drink soda after. Terrible diet. I've gained lots of weight after losing like 80 lbs 5 years ago. Gained the 80 back plus like 80 more. I hate when doctors immediately say "you need to lose weight" to a solution about everything. But I guess it needs to be done. Glad to see lots of people are having this same skin issue as me. Not happy about the situation at hand, but glad to see im not alone. Glad I found this page.

If anyone wants to talk about it directly, feel free to email me. Please no spam. Just people trying to talk. Because I'm semi new to this SH** and would like to hear some tips. Or give my advice on what I do that might work for me.

is laser any good for hs ? is it covered by insurance ?

OMG! I think my husband has this!

I have been suffering with HS since 2009 when I went to a General Surgeon who diagnosed me with this incurable disease that has literally ruined my life. When I was diagnosed I weighed 135 pounds at 5'8", I was exceedingly happy, career driven and confident. Today, I write to you after 3 intense surgeries, almost a hundred flare ups and lacking all confidence 60 pounds heavier. This is because I am depressed and every time I try to exercise I flare up again. I have tried everything except anorexia to try and lose the weight but my depression does not help it makes me eat more. The only person I discuss the disease with is my mother who does not have it but has been very supportive, I don't discuss it with my boyfriend of 6 years because I don't want him to worry. I most recently had surgery in December 2013 on my panty line by a Plastic Surgeon who did a phenomenal job. I now get them on my back side which makes it incredibly painful to walk and sit. I need advice on definite foods to avoid and tips for weight losing exercise that haven't caused too many painful flare ups?!?! Please help ...

Hello all!

I have had HS since 5 years now and the size of the boil is as big as a golf ball. Its scary and Ive been on Doxycycline hyclate capsules for over 6 months now but no improvement is seen. I think I belong to type 3 HS not sure though. Its hurts like hell and the boils are frequent on armpits and buttocks. My nationality is Indian, I got married a year and a half back and moved to California with my husband. Before marriage my boils were not as frequent as they are now. I was a PCOD patient too but now my PCOD is normal. I now weigh 90 kilos and my height is 5 feet 7 inches. Surgeries in USA are very expensive so doctors their recommended me to get it done from India whenever next I go my parents. So currently I am in India and visited one of the most experienced and highly qualified doctors at MAX hospital in New Delhi, India. Its a very well known hospital and someone suggested we should see a doctor there. As HS is related to weight, I heard of a weight loss surgery called Bariatric surgery because exercising definitely makes these boils worse. When I visited the Bariatric surgeon, he said I don't quality for that surgery as my BMI was too low. Supposedly its for people whose BMI is above 35 and mine was 30. Then that surgeon very confidently suggested I should see a plastic surgeon. I then searched web how plastic surgery and HS is related and I found a lot of link. One of them is this: http://aaronstonemd-plasticsurgery.blogspot.in/2010/06/hidradenitis-of-armpits.html
Videos for entire surgery and how its done is also shown in this link. My question here is this is a very expensive surgery and it has only been successful on armpits. If I get this skin grafting done for underarms, my buttock boils will still continue to come right? And getting skin grafting on every possible HS prone area is like heavily expensive. So should I or shouldn't I go for it?

Then today I was going through another article: http://hs-mytreatments.weebly.com/
I really want to share this one with you. I'm not sure if its a genuine person sharing their problem or it might be a hoax, who know? Please give me your opinion on this and the we can discuss more on this.

Cheers!
Nimisha

It may seem random, but I read that book, The Hidden Plague and she mentioned leaky gut syndrome... I planned to follow the paleo diet, but I was afraid of the large committment... so to start I force fed myself yogurt to eat more healthy bacteria... and lo and behold (knock on wood) I am feeling super! No more breakouts since eating yogurt. I eat the La Yogurt probiotic brand... and I can even almost enjoy the strawberry banana flavor. Honestly though I wouldn't mind any flavor as long as it fixes this issue. Still watching what I eat and not overindulging in any particular food group... hoping this isn't just a chance thing. I am due for my famous girl time of the month soon and usually by now I would be broken out and in pain but, again (knock on wood) I'm doing great!!

I have it too, I'm glad I found this thread.