Any other Hidradenitis Suppurativa sufferers out there?

aspoon0422

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.

biirtie

I'm so glad I found this!

I have been dealing with HS since I was a kid, maybe 12 or so. I'm 26 now so it's been a while. Even then I didn't tell my mom until I had one so bad I could barely walk. I mainly get them in the inner thigh area, which now has a bunch of ugly scars that will be there forever. I also started getting them in my armpits and my bum a few years ago when my weight started to increase. The bum ones are a nightmare because they hurt like hell but at least a scar in the crack of your butt is less noticable than the others. I also get small, acne-like breakouts under my breasts which don't scar but are annoying.

If you have the money for laser hair removal definitely do it. I had it on my bikini area and underarms and I haven't had a single boil in my armpit since, and the thigh ones have definitely decreased. I think weight loss is also key. I'm a yo-yo dieter but when I was slimmer I was certainly dealing with it a lot less.

Honestly for me the best thing was finally figuring out what was wrong. Typing HS into google and looking at the images that came up made me feel so much better because I was seeing exactly what was happening on my body.

ouzeldouzel

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.

Xander916

I'm so happy I found this forum/thread. I thought I was the only one.

mark2605

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

nitapita143

I have searched and Googled, and read and gone to a dermatologist and I have never found as much info on this terrible disease as this forum. Thank you so very much for opening up about this painful and embarrassing disease. I have suffered from HS for 5 years now. I've probably had it longer however I didn't get really bad flares until I started gaining weight. I get them on my inner thighs and it makes life suck. Staying active is a chore because its so painful to just walk across the room. The dermatologist has given me Clindamycin Gel, an antibacterial soap (that surgeons use to scrub in) and an antibiotic called Cefadroxil. I use the gel and the soap everyday but the antibiotic makes me hyperactive and very ill. The soap and gel make my skin a little smoother but its been too soon to see if it help 100%. I keep hope that it does, but I have learned that this disease is relentless.
Although I absolutely hate that you guys are suffering this, it makes me feel better knowing I am not alone. Its sad that this disease is becoming more and more common, and I pray that there will be a cure. Every time I have a flare I just become more bitter about the fact that I was cursed with it.
I think I will try the nightshade thing, it sounds promising. Who needs potatoes anyway?!

I dream of a day with no ace bandages, hot compresses, and waddling.

Carlos0911

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.

wszedxikm

have been diagnosed with hs . looking for non surgical treatments . have been taking anti biotics with some success but want a better solution . great 2 c this forum exists

wszedxikm

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

middlehaitch

I have read the whole of this thread and checked a couple of websites inc the Mayo Clinic and have this observation:-

A lot of people are trying to cut out the nightshade family.

Smoking cigarettes is supposed to be one of the triggers for HS.

Tobacco is part of the nightshade family.

I just thought I would post this info as it is a connection I have not seen anyone make.

Screwedntattooed

OMG! I think my husband has this!

Maryann1247

I've read over what everyone has to say and Its just so sad because it really is a life altering disease. I would love if someone could help me with what to do. Yesterday was the first day I got the bumps in my armpits. They are very painful and I have one in each. They are under the skin and it just hurts every time I try to squeeze something out of it. Could this be hs? Or am I just being dramatic? I have bad acne on my face as well and that in its self makes me so incredibly depressed. It's not like normal acne either it's like under the skin and scary. I've always had hair folicule problems. Bumps always in my armpits but never like this. I'm so scared. Do I need to get them surgically removed, is this for sure hs ? What kind of dr. Do I go to. When I go to the doctor do I say I think I have this. Please help guys.

kdob928

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 ...

lisadavis21

Ok so first super excited that I found this forum. I'm really curious about those who have received laser treatment and how that helped long term. I do understand that just because you got laser treatment for one area doesn't mean it can't come in another. On another note I would say that high dose birth control probably saved me until recently when I stopped taking it. I was using the patch which is three times more hormones than the pill. When I started using it seven years ago it was only for birth control and at that time I did not have HS. I would once in awhile get a boil under my left armpit which my doctors called a carbuncle because they said it was from shaving. I believed them because I get them below as well and that's due to having really curly hair and not following the recommended guidelines when shaving. So feb 2014 I decided to stop my birth control only because I was afraid that I was on it too long ....shortly after is when my problems started. About two months later I get single bumps that appear then disappear. Then June I get it with a cluster of them, high grade fever ... One starts draining and omg the smell!! I'm a medic and I almost threw up. It kinda heals but comes right back three weeks later and now I have two draining wounds since July that won't close or heal. I was referred to a plastic surgeon and he just wants to cut the whole thing out, however I'm only Hurley stage two and prefer to do excision as the last resort because that calls for skin grafting as well. Skin grafting in the axilla is tricky and there's a huge risk in me losing range of motion. So after weeks of research I decide CO2 laser treatment is the best as it also destroys the sinus tracts under the skin. Healing is completed by secondary intentional healing and of course there will be a scar but eh it's under my armpit. So long story everyone is different and just throwing out there that high dose anti androgen can also help. So I will immediately go back to my birth control. I'm wondering if anyone can give me insight to laser treatment they received and if it helped. Because at this point even going back on BC i have to deal with the current lesions. I also noticed alot of ppl noted gluten free diet etc but for me I didn't notice flare ups due to diet. So it's not the set in stone thing however I do acknowledge all the comments and would consider it.

nimisha3015

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

Findingmeg

I literally just stumbled upon this...looking at free e-books available through my local library. I had no idea it even existed. I'm stunned, freaked out a little...

The Hidden Plague
A Field Guide For Surviving and Overcoming Hidradenitis Suppurativa
by Tara Grant

She's the girl who led the charge of the massive online community that exists today.

This is huge!

thathelenagirl

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!!

TaherniaHS

My Name is Amir Tahernia, and I am a specialist in treating Hidradenitis Suppurativa.

Research and discoveries in the past few years have helped the medical community better understand how to treat Hidradenitis Suppurativa most effectively, and Surgical Excision has proven one of the most effective options for many patients, including my own.

It can be hard to differentiate between myths and factual information about HS on the internet. I would like to offer my website as a tool for information about the condition you can trust. http://www.amirtaherniamd.com/hidradenitis/

Please feel free to call my office with any questions at (310) 614-9701. I would be happy to speak with you over the phone or in person about your specific condition.

cheliebee

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

zombiekate

Hi. I just created a support group for people with HS. Feel free to join. Thanks!