Any other Hidradenitis Suppurativa sufferers out there?

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  • katatak1
    katatak1 Posts: 261 Member
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    Hey everyone who has responded here since the last time I was here... come on over to our support group! You should be able to just search for Hidradenitis (I think I left out the suppurativa). Come and join us. We're a small group, but there's some decent discussions.
  • strawberrytoast
    strawberrytoast Posts: 711 Member
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    I think i may have this also, but the flare ups are only a couple a year or so- not all that often. When i used to wear jeans I got flare ups much more often, Im not sure if there is a relation to wearing jeans but i dont wear them anymore and its a lot better. Always around the pants line/top of thighs.
  • Gr8ChangesAhead
    Gr8ChangesAhead Posts: 836 Member
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    Yeah I am not alone on here. I have had this condition since I was 11 years old, I have tried every dietary exclusion possible with no positive results. I have had multiple surgeries along my axilla but they continue to return, They have also gotten as large as a softball. I have found every method of self surgery imaginable to extract the nasty bloody pus filled sacs only to have them return. I also get them along my bra line and groin line which at times makes it impossible to even sit. I may next attempt the tumeric and zinc. I have done month after month of prescribed antibiotics year after year and the may lessen but return quickly. My scarring under my arms and under my abdominal flap are horrendous. Even if I lose all the weight a bikin is not in my future.. My son has also unfortunately inherited this condition his dermatologist says the new trial laser treatments are promising.
  • shellynmark
    shellynmark Posts: 4
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    Okay, so we have tried many things and i just found our newest option. Nightshades...removing all from our diets for at least 30 days to see if any changes. We are in Canada and doctors here know very little about it. I have learnt almost all I know by researching it myself. Good luck to you all and make sure you are bathing daily...baths rather then showers so not to dry out your skin is best. Hot compresses when needed to force them to drain rather then tunnel. Any Q's, don't be afraid to message me and I will help you find any answers I can't answer myself.
  • shellynmark
    shellynmark Posts: 4
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    Things that can help at least a little bit are keeping cool and clean. Reduce stress, sugar and caffeine intake as well as smoking are things that can bring on flare ups. Our next challenge...cutting out potatoes :( worth a try. Anything is worth a try. Drain any and all as often as you can. I'm tired at the moment, but as I think of anything helpful I will post it :) Remember, hiding them just makes them grow bigger and spread further :( if you can't get them under control then get them removed. The deeper they get the harder it is to get the entire tunnel!
  • shellynmark
    shellynmark Posts: 4
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    Well just a brief history, Mark is 38 and has been suffering since childhood/youth. He was only told what it was last year!!!! He's been hiding it from everyone. His mom didn't even know until I (Shelly) researched it and sent her info on it. When sent to a surgeon, I get to explain it to the surgeon. When we got to emergency rooms monthly. I get to explain it to the doctors. They all assume it's just one abscess. It is hereditary as his mom and aunt have flare ups from time to time and his grandfather, their father had them. He is that fun stage where they are always there and they are draining 24/7. Groin, underarms, back, legs, inside elbow (just got cut out 2 weeks ago), tailbone, backside....well anywhere he sweats is where they are and have been for years. He is on antibiotics daily and those just keep them calmer at times. I can tell if he misses his medication and then the next week we're back at the hospital getting sliced open and local doesn't numb it since it's so full of puss so he has to feel it all. Last time he had one behind another and doctor had to cut through the top to get the next and get his fingers right in there while he could feel it. Then it's packed for weeks to drain completely and that was a few months ago and now...it's back and we're waiting till it gets painful again so they'll make him sit in the waiting room for hours again before they cut it open again. His surgeon keeps saying...oh it'll calm down and go away on it's own...we don't like her much and going for a new one this week!
  • shellynmark
    shellynmark Posts: 4
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    it sounds the same, but there are different stages etc.
  • mrspruitt2208
    mrspruitt2208 Posts: 1
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    Just want to say that I am so happy that I found this website and post ! I suffer from this disease and have tried everything without any results . Its nice to openly say that I have this to people without having to hide or be embarrassed about it. Mine started after the birth of my daughter almost 7 years ago. When I first got it , it was only one bump under my arm , then it quickly progressed to more and then moved to other parts of my body . My husband is so supportive of me and reminds me I am beautiful and he does his best to make me feel that way . But im sure most of you agree that when you look in the mirror and see scars on intimate parts of your body it is hard to feel beautiful. I am always looking for ways to at least tame the condition and if i am lucky enough to find something that works for me , i will be sure to share with you all !!
  • lyndafigueroa
    lyndafigueroa Posts: 1
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    I am a little older than you; however, I had my first one around your age. I never seemed to get more than one at a time over the years. In 1998 I had to do a year of chemotherapy and they stopped all together. I got up the nerve to say something to a dermatalogist about it in 2001 and he gave me antibiotics. Needless to say, that's not the answer either. Fast forward to now, I am in my mid forties and have started developing them under my breast. At a recent exam with my OB/GYN, (I was breaking out everywhere) he noticed them. He mentioned Hidradenitis Suppurativa. Interestingly, he compared it to Pemphigus Vulgarus, which my sister was recently diagnosed with. Both are immune deficiency disorders. I have been taking the Zinc Gluconate for about two weeks. No new ones have developed. I am so excited to think this could be the answer. My only problem, I seem to get a little nauseous when taking them. I am taking 50 mg tablets. I think I will just keep it at one a day for a while.:flowerforyou:
  • Jeremiah30_17
    Jeremiah30_17 Posts: 4
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    My Mom started popping boils, around 8-10 years of age! One time, she had my Dad pop one, & I was soooo embarrassed, & I think two of my brothers, were in their room! I would get them, about every six months, or so....blackhead type ones, all in between my legs! I had a bad one, during my pregnancy, in 1987! I had a few lanced" after that!

    the worst started, around 2001! I was working in a hospital, but I know, that's not the cause! Since then, I no longer work there, & I've had the worst flare ups, in my Life! Last year, 2012, I spent all Summer, most of Fall, & probably Winter, going to my Doctor, every other Day!

    It's lessened, but I still get BAD; OUTBREAKS!

    I've been using Antibiotics, Antidepressants,, a Walgreens Antiseptic Skin Cleanser, that WORKS VERY WELL!!; & Clindamycine Gel!

    2-3 showers a day!

    Popping them on a Daily Basis!

    I am now looking for Trigger Food Lists, Healthy Foods for HS, etc....
  • Jeremiah30_17
    Jeremiah30_17 Posts: 4
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    Katatak, may you friend request me?

    Phyllis @};~
  • Jeremiah30_17
    Jeremiah30_17 Posts: 4
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    Lynda, how many 50 Mg TABS, do you usually take, a day?

    Phyllis @};~
  • Jeremiah30_17
    Jeremiah30_17 Posts: 4
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    To whom it may concern, please do not "blame" Your Dad! I just lost my Dad, in February, he we my closest relative, @ the time! :(


    Revert your anger, toward the disease, not a human being, with such a complicating disease!
  • shamisty
    shamisty Posts: 1 Member
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    I have this too! I think i got this when I was about 18 yrs old. I was not overweight or anything. my first one was on my left near my groin area. and now they have spread eveywhere. I had a cherry sized one on my bum, which made me nearly pass out when it was drained. I have them on my bum, groin, breasts, arm pits. It's sooo embarrassing and most of sooo painful. I haven't been able to try anything to help it go into reimssion. although when I was pregnant with both of my kids i never got 1 flare up anywhere at all or even close to one. I wonder what hormone was preventing it???!!! There is an HS support group. http://www.mdjunction.com/hidradenitis-suppurativa they are sooo helpful and soooo nice!
  • IamDoe
    IamDoe Posts: 24
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    I have it. I was diagnosed about 15 years ago.
  • Nayinva
    Nayinva Posts: 5
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    I've had it since 1997 but of course like most was misdiagnosed year after year... until 2010 when I started doing my own research and found a dermo. that was educated on HS. Walked in and told him what I thought i had and the stage... he confirmed and now I am on my new journey to reduce the flair up's and lose weight which is a catch 22 in itself. I miss the joys of be about to wear strapless dresses or tank tops! I refuse to go under the knife to remove anything, and my Dermo does not even recommend I&D of the boils when they appear.

    I wish more people would take about it or that it would be something that is voiced openly on the media! I wonder how many others are out there suffering and not really know why....
  • LovleeGirl
    LovleeGirl Posts: 18
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    I have no anger towards my dad. All I was trying to say is that I inherited this disease through his side of the family.

    Sorry for your loss.
  • jacksagod
    jacksagod Posts: 176 Member
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    have it myself... have had surgery to remove infected skin...it suxs but can't let it stop me
  • ClosetBibliophile
    ClosetBibliophile Posts: 34
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    Definitely would be very interested. I've had HS for 5 years, currently being diagnosed with it. I'm stage 1 and am hoping to stay that way. Am attempting to cut out nightshades at the moment, will tell you how it goes.
  • tracysch108
    tracysch108 Posts: 5
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    My adult son has recently been diagnosed with this. He is trying the Zinc and to go on a gluten free diet. I will tell him about this group!

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