Hidradenitis Suppurativa (HS) Community
Hidradenitis suppurativa
About This Community:

Hidradenitis Suppurativa (HS) is a chronic disease of a type of sweat gland. It can occur in one or multiple areas of your body. HS usually develops in your armpits, groin and anal area. It causes long-term skin inflammation and can be painful. The purpose of the community is to share support and information with Hidradenitis Suppurativa (HS) patients and their loved ones. Topics in the community include: causes, clinical trials, complications, family issues, living with Hidradenitis Suppurativa (HS), prognosis, research, surgery, treatments

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Hidradenitis suppurativa

I was diagnosed with HS a few years ago and subsequently had a surgery to remove an infected sweat gland in my left arm pit.  During the last year I have had a recurrance of symptoms in my right arm pit 4/5 times.  Most generally we have been able to "deal" with this with clyndomycin, although on one occassion I had to have the area lanced twice.  I am currently having issues again.  We have started the antibiotic treatment today.  In the past my doctor has been reticent about advancing to the surgical procedure, but I am getting sick of having to deal with this on a regular basis.  I want to push my doctor to do transfer my care to the surgeon to get this accomplished, but I don't want to make him mad.  Any thoughts on whether I should wait or go ahead and press the issue?  I am aware that recovery is dificcult, but I have done it once and am going into this (I feel) fully informed.  Thanks!!
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Avatar_f_tn
Hi

Hidradenitis Suppurativa is an uncommon chronic inflammatory skin condition. The underlying cause may be autoimmune, genetic or hormonal imbalance. As with many skin disorders, HS symptoms are increased by stress.

There is not a single treatment developed as yet for Hidradenitis. The current modalities of treatment include antibiotics, long term (commonly tetracyclines- as a preventive measure) and short term (typically Ciprofloxicillin- for secondary infections), retinoids, high-dose systemic steroids, birth control pills (to make up for the hormonal imbalance).

You can discuss with your doctor about other surgical treatments such as incision and drainage of the lesions, excision and skin grafting and CO2 laser therapy.

Radiation treatment has also been used for this condition

You should wear loose fitting clothes and underwear and avoid shaving the affected areas to prevent skin irritation. Some anti-bacterial soap may be used for washing the lesions. Application of warm compress or baths to induce drainage may be tried to achieve some relief from severe, often debilitating, pressure induced pain. A general advice would be to stop smoking and lose weight, which may contribute indirectly in symptom control.

For more information, you may like to refer to the link below:

http://www.mayoclinic.com/health/hidradenitis-suppurativa/DS00818

Take care!


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626901_tn?1261876405
returned to the doctor today and had to have the area lanced, we also switched to sulfur antibiotic
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626901_tn?1261876405
ok, I've been on this antibiotic for almost 7 days now, and things were going great.  After the lancing and starting the new antibiotic (SMZ-TMP) the swelling was going down wonderfully and I was pretty much reduced to what looked like 2 boils.  These had even broke open on their own and were draining.  Today I started noticing a renewed tenderness to the area, and it feels like it might be "filling up" again.  The "boils" have stopped draining as well.  Any thoughts on what I should do next?  Anyone?
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626901_tn?1261876405
I went to the dr. this morning and he lanced my armpit in 2 places this time.  He also packed the wounds, and wants to see me back tomorrow.  I guess he got some white stuff out of it this time when he "squished" it.  Last week was just liquid.  Lots of liquid.  I have an appointment with a dermatologist on the 14th, as the surgeons my dr. contacted wanted to be assured that all other measures have been taken.  I know the surgery will suck, but I can't wait for this whole ordeal to be over.  Just when it seems like it's getting better it backtracks.  I'm getting irritated by the upset stomach from the antibiotics, and then when the pain comes back I'm all dopey with the hydrocodone.  Thanks for listening and any suggestions are appreciated.
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626901_tn?1261876405
Well, once the dr took the packing out of the holes I started feeling much better.  Haven't taken a pain killer since.  Still washing twice a day with Hibiclense and taking my antibiotic.  Switched to doxicyclene to see if that was easier on my stomach than the bactrim.  Wish me well on the 14th when i see the dermatologist.  All is good for now, No swelling no drainage.
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626901_tn?1261876405
Ok, well the doxicyclene and my tummy didn't agree, so we switched me back to the bactrim.  Saturday night I noticed another lump starting.  Thankfully it hasn't gotten bigger since then.  Went to the dermatologist today, and didn't receive the answer I was looking for (surgery) but now i get to rub clyndamycin ointment on it twice a day after I wash with my hibiclense.  When (if) the lump disappears I get to cut down to just using it once a day, until I see her again in 3 months.  Part of me is hoping that this works, even though it's just pretty much a control measure, and part of me hopes it doesn't so I can cut to the chase and get the surgery over with.  I didn't have all this bs when I had my other surgery, so it's frustrating.  Also, I found that if/when I have the surgery, I'm going to have to travel to the other end of the state (a 4-5 hour drive on way) to have it done as none of the surgeons in my area are apparently familiar with the procedure.  Now, I may be wrong, but shouldn't most surgeons be able to slice open an armpit and remove the layer of skin the sweat glands (and hair) are in and sew me back up?  Granted it may be much more complicated than I think, but still.  Also, she talked about sending me to the dr that did my first surgery, since he was so successful.  He's a couple hours farther than the state teaching hospital.  Now, in my head, it would only make sense to send me to the U of Iowa for the surgery so that more surgeons would become familiar with the procedure, therefore (hopefully) insuring that someone else wouldn't have to travel as far for the same problem.  Am I wrong?  Any thoughts at all are appreciated!!
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361053_tn?1225890870
Hi there!
Just noticed your posts.  I thought I maybe could help.  I have had HS for approx. 13 years.  I have had multiple surgeries & multiple lesions.  They started around my breasts and eventually migrated to my armpits & groin area.  I haven't had alot of luck w/ treatments, but I have found a few things very helpful & thought I would share.  The things I have tried somewhat successfully would be:
tanning (sometimes in the tanning bed)
salt water
baby powder
cotton clothing
I am trying to find out now if laser hair removal would be effective in treating this condition.  Since they say it is often an issue w/ hair follicles, you would think that this would help.  Let me know if you hear anything new!  :)

Thanks!
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626901_tn?1261876405
Thanks for the advice!  I am usually sporting cotton t-shirts, and since this last outbreak, I've quit wearing a bra entirely.  I'm washing twice a day, and applying clindamycin gel once a day.  I'm supposed to do this for 3 months and then see the dermatologist again.  My psychologist suggested a surgeon closer to me that might be able to do the surgery when the time comes.  I've had the surgery on my other armpit a couple years ago, and it was successful, which is why I want to do it again.  I'm already tired of stinking...lol  My counselor also said she had heard of some "crystal" that was supposed to help keep the odor down (apparently her father had had issues) and she was going to ask him and let me know.  I'll pass it on when/if I hear of anything.
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Avatar_n_tn
I have suffered from HS for 20 years.  I have tried countless treatments (excluding surgery) which dont work.  I have learnt to deal with it over the years and am just getting over a particularly bad episode.  My reason for writing is my 13 year old daughter.  She has had HS since she was 8 years old.  My heart is broken at what she is going through as i know first hand how painful and debilitating it is.  She has something which i dont have and i havent come across it anywhere else.  The top of her left arm is 3 inches larger than her right.  The rest of her arm, wrist and fingers are also bigger on that side.  The surgeon said it is caused by blocked glands and that there is no cure (his words were "she will just have to live with it").  She is very overweight and has been since she was 2 years old.  I started taking her to the doctor at that age thinking she may have an underactive thyroid gland or something as she didnt eat enough to be so large.  The doctor said there was nothing wrong with her.  My daughter is beautiful and very clean - she showers twice a day.  I know this disease is not caused by poor hygiene but try telling that to other 13 year olds.  By the way we have tried acupuncture, herbalist, chinese medicine etc but all to no avail.  Please can anyone out there help us.  (We live in Scotland,UK).
Thank you for taking the time to read this.
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361053_tn?1225890870
Hi,
I am so sorry to hear about your daughter.  That breaks my heart...

I recently was diagnosed w/ PCOS & Insulin Resistance...which I believe started at a much earlier age.
They have me on a medication called Spironolactone to lower my testosterone & androgen levels.  My doctor knows that I have HS & have also had some unusual facial hair come out of nowhere.  (Another side note I have hypothyroidism & have had many weight issues)
So, that being said...from my experience, I honestly believe that HS is caused by hormones being out of whack.  I have finally been able to lose some weight and am smaller than I have been in over 10 years!  My skin has dramatically improved & I feel so much better.
Have you tried taking her off of all sugar?  When I found out about the insulin resistance, they put me on the diet Sugar Busters & found it has really helped!
Also, I have found in the past that saltwater & sun (or even the tanning bed) has helped me.

I hope some of this helps.  She should have a complete workup on all of her hormone levels.  HS is known to be associated with PCOS.  My doctors never figured this out my whole life until I finally found a doctor worth something who has struggled with PCOS herself.  It is SO important to do your own digging & not trust what doctors tell you until you trust your doctor!  :)

Good luck!
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Avatar_f_tn
I was diagnosed with HS about 1 year ago and have been through the ordeal of lancing a BIG DEEP boil on the bottom of my breast (which DOES NOT NUMB due to infection...OUCH!!) and recurring PAINFUL boils in my armpits. I haven't had any more breast issues (thank goodness!) but am still having the armpit problems. Mine seems to respond best to Doxycycline when it flares up. My flare ups seem to correspond with my PMS...it happens about 5 days before my period, so I too think it has to do with a hormone imbalance. Sometimes though, it just randomly happens mid-month. I also put "udder balm" or "bag balm" on the boils and sometimes this will help soften them up so that they can drain. Yes, it is marked for veterinary use, but is available in your local drug store. It's cheap, seems to help and is totally safe on humans.

The main reason that I am writing this note is because I noticed something VERY interesting during my two most recent weight loss attempts. I am 5'4' and 180 pounds at the moment and had a high weight of 198, so I am on the chunky side of the fence. I wear a size 17 in blue jeans and extra large tops. I have tried many diets, but the only one that works quickly for me is a high protein, VERY LOW carbohydrate ZERO SUGAR diet. (Atkins induction menu for one whole month instead of the suggested two weeks) I did this recently for one whole month (SHEER TORTURE...LOL) was very strict about it when I did it, and I kept the carbs below 15 grams a day. MEAT, EGGS, CHEESE AND LETTUCE ONLY!!! "YES" TO MAYO and ranch dressing, NO TO KETCHUP (it contains sugar) I allowed myself a very small portion of green beans or broccoli once a day. I also drank enough water to fill a lake. NOTHING TO DRINK BUT WATER...and an occasional unsweet tea with Splenda! NO DIET SODAS!! It takes the first three days to detoxify your body and then the weight loss begins! :0)

I recently managed to "stay on the wagon" for a month and lost 18 pounds without exercise. The thing that makes this relevant to this forum is that during the time that I was on that strict diet without sugar or carbs (which turn into sugars in the bloodstream) I didn't have ANY outbreaks of HS and the outbreak that I had when I started the diet faded away in about 7-8 days after I started the diet. I then "fell off of the wagon" after a month and returned to my normal everyday "idiot" diet of fast foods, highly processed foods and refined sugars. (and PEPSI, PEPSI, PEPSI, ALL OF THE TIME...FULL FLAVORED)

It took about two to three weeks of the old habits to REtoxify my body before the armpit symptoms reappeared, just as bad as they were before. HMMMMMMM.......I just wonder.....

I wonder how many HS sufferers there are who are carb and sugar intolerant like I am? I tend to gain weight in the middle and am an "apple" body type. I was told that I am prediabetic and have high insulin levels. My blood sugars are normal.

I would almost lay money on the fact that MANY (if not all) cases of HS are caused by toxins in our bloodstream caused by bad diet habits and high insulin levels in the blood. Especially since some of the research I've done says that most HS sufferers are overweight.

I guess that when my pain and suffering in my armpits is worse than the sugar and carb cravings, I might actually break free from this HORRIBLE disease. I would love to see an experiment with about 100 people to see if my guess is correct.

Maybe someday I'll find the willpower to make the permanent diet/lifestyle change and test my theory over a longer period of time. :0)
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Avatar_n_tn
I do have this for last 5 years only on the armpit..
I used the a tropical solutions the swelling broke..doesn't matter how big it is..it immediately close the close and heal it very faster.
I forget its name...let you know the name tommorow...
I am having this problem now-a-days after doing the pranayama everyday..and its important to loose the weight.
kaphalapati pranayama is most important..try to do it 15 mins to 30 mins everyday...u will see unbelievable things happening in ur entire skins.

http://www.*******.com/*********************
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1422823_tn?1287682880
I am 29 and have been suffering with this since I was 14. My worst area is under my arms n both sides. After trying every antibiotic out there (which has not worked) I finally got a referral to a plastic surgeon.. I did find that a high protein low carb diet helped me as well, i just couldnt stick with it!
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Avatar_f_tn
Dont work. been on it for months wit no improvement. help I'm suffering!!!!
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Avatar_n_tn
i am scheduled to have the surgery tomorrow after finally being diagnosed after years of this pain.
i am quite nervous and thinking i want to cancel the procedure right now.
i have been basicaaly pain free and problem free for almost 6 months, i saw and infectious disease dr and heavy antibiotics.
i also am taking fish oil, large dose of vitamin d3, acidophious, womans multi viatim.
i feel great right now and dont want the pain associated with the surgery.
i also wash daily with half hibaclens, half 97% rubbing achohol, and mild body wash avoiding affected areas.
what to do what to do?
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Avatar_m_tn
I have been keeping tabs on what i eat etc (on a diet and getting healthy) and have found the same thing as Bossylady. I had stopped eating sugary foods and gone on a more primal diet for a few months and my HS had gone!. The one day when I went on a sugar binge of chocolate and lollies I end up with a flare up the next day.

I first thought my HS was alcohol related because i would mainly had then after a big night but I found that if I drank vodka lime and soda I didnt. This had to do with what I would mostly drink (vodka and sugary mixers like lemonade or Smirnoff blacks.

Now that I have figured it out my symptoms have pretty much gone and flare ups are now a thing of the past.

might be something to look into?

Id previously tried tumeric and antibiotics. Last time I had antibiotics I have really bad stomach pains that landed me in hospital. I had surgery on my leg to drain it. The only thing that has done anything is the low sugar and carb diet.
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Avatar_m_tn
I've been diagnosed with HS for about 10 years now. I have had the surgery to remove my sweat glands under my arms. They did not return in those areas after that point. However, I did still from time to time get them on my butt and thighs until I decided for, blood pressure reasons, to change my whole diet. I try not to eat foods high in refined sugars, I don't even buy it anymore. My diet that consists of only turkey, seafood, and chicken (no beef or pork). I use only olive oil only to fry foods. This was a year and a half ago. I drink only water, with the occasional juice. After the diet change, every boil I had at the time disappeared within 3 months of the change. I only see a return of a boil, if I eat something high in sugars back to back (like during the holidays or birthdays lol), beef, or pork. However, it usually goes away after a few days to a week or so. The original intention of the diet change was to lower my blood pressure. The additional benefits were 60 lbs of weight loss and the boils going away!
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Avatar_f_tn
Pharmaceutical Grade Fish oil-- once or twice a day depending on what stage HS u have. I take Nordic naturals Pro- Omega. I suffered from stage one progressing to stage 2 HS for 15 years and it wasnt until I started taking pharmaceutical grade fish oil (which gives u 1000g of fish oil as opposed to 350g as is found in over the counter drugstore fish oil) I AM ALL CLEAR NOW. For the first time in 15 YEARS. I am all clear. I take nothing else apart from this. If ur taking other meds or are preggers please ask ur doc before taking fish oil. Best of luck ladies and may God give u respite from this illness as He has given me. Seriously tho, try it!
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Avatar_f_tn
Pharmaceutical Grade Fish oil- twice a day-- not the one u get at the drug store which only has 350g of fish oil but order from amazon or go to the health nuts store and make sure the dosage per pill is 1000g. I take Nordic naturals pro omega lemon flavored fish oil and it cured me. It really cured me.
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Avatar_m_tn
Thank you for the suggestion, as we all know this is a painful and frustrating condition. I just ordered some and will keep my fingers crossed!
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617254_tn?1240425222
I've had HS for about 22 yrs and have just found something that eases the inflamation (inflammation) some. It's called Emuaid, you can get it online and it takes the angry red flare ups down. I'm not going to do surgery because it'll just come back somewhere else and I've gotten used to it now. Non stick surgical pads are great when they are wrapping so they don't stick to underwear. I kept pulling the scabs off until I started using the pads. Hope this helps a little!
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1041243_tn?1375234120
This thread was started in September 2008, so please, if you have any new tips/questions, start a new thread! Thanks!
~H
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