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Hidradenitis suppurativa

Posted by @midnight in Skin Health, Sep 6, 2011

I would like to talk with anyone who has this disorder. I recently was diagnosed with this after having a cyst and uncontrolled blood sugars. Did not know I was "diabetic" until they called me back to the ER for a blood sugar of 680. Now I have horrible cysts that wont go away and are very embarrasing. Anyone out there who can help me understand and deal with this?

Tags: Infectious Disease, Skin Conditions

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Posted by @alyssajean, Dec 15, 2011

I just recently got diagnosed with it I had to have a wick put inside the boil under my armpit


Posted by @mbrittain, Apr 24, 2012

i has my first hs cyst at 18. 6 major surgeries with recurrences at site of surgery before area even healed. finally i found an absolutely wonderful, caring pa who researched this [never before diagnosed] problem. Methylpredsinolone dose pack started at first sign of lump IMMEDIATELY resolved problem and cyst disappeared. We also tried bactrim but found no difference with abx added. also noticed through the years that cysts often followed mentsural cycles - worsening before start and lessening after period ended. But without prednisone, cysts seemed to come back worse second time. though not proven, my own personal theory is hs is affected by hormone fluctuations and stress. If you have hs, please try the methylprednisonlone dose pack. You will be AMAZED! My PA is my hero and I thank Heaven every day for her and her willingness to research my symptoms and find the closest thing to a cure there is. If you live in kansas, I would be happy to share her name even though I don't want to share her.


Posted by @autumnleaves, Nov 7, 2012

I've had hidradenitis suppurativa since puberty and have suffered with it since that point in time. I didn't know what it was till about 15 years ago and immediately started getting the normal treatments for it: different soaps, creams, antibiotics, surgery, and hate to say but none of it has been very successful at all. I'm not 57, still going through menopause and suffer from PCOS as well, which makes this disease even worse. I have the tunnels in my armpits and on the back of my neck and with the last dermatologist, HIS only possible solution was to go on Accutane. But after reading how people in my age bracket with this disease respond, I prefer to stay alive and not add more health issues to my already long list.

Antibiotics have stopped helping, and I'm allergic to sulfur and sulfomides so cannot take any antibiotics that contain that and that might actually help because of my allergic reation. It is VERY humiliating and painful and I don't really get out much without paying for that trip and added sweating. Cool weather is my friend as my body just runs hot all the time and always has. I'm one of those crazy people that wears shorts all through the winter. My PA is so compassionate about my situation but has sent me on to specialists, dermatologists, and surgeons and doesn't know what else to do with me.

I find it very overwhelming some days and depressing. But most days I can get beyond it and I'm just grateful I can get around. I'm also diabetic but under control using the Byetta shot and not using insulin. It's good to know there is a place like this to come and talk about what is wrong, because most people can't even comprehend to what degree this gets and how badly you hurt and suffer in silence. Has anyone gone to an Infectious Disease man (although this isn't contagious) or a Wound Specialist to see if something can be done to give a little relief ??? Just curious.

Also I have scars and tunnels all over my body in the armpits, groin area and even private area where they cannot be bandaged; also on my neck and back and "bum" and up and down the back of my leg to the knee. Let's just say I'm covered up and some get as big as small lemons under the skin and when they break it's just outrageous finding bandages that will cover them. I only have 2 types of bandages that work okay with my skin. It's like you have one thing on top of another and another and another and everything is working against you. 🙁


Posted by @sandig, Jan 1, 2015

I started using OTC soy estrogen called Soy Care and it has helped me tremendously....other brands did not work. Hidradenitis Suppurativa support group on FB is good resource.


Posted by @jeanneann, Dec 19, 2011

I have had HS for about 12 yrs and have just undergone my 4th surgery.. Im so sorry you have this disorder. Plain and simple, it always hurts, no one seems to understand HS and everyone tells me what they think will cure me. I was small, fit, ate good and had great bills of health and still developed this. For a few years I was going to Dr to have my abscesses lanced about once a week, plus had a life supply of Keflex. I finally went under the knife for my left arm pit and both groins. It came back under my right underarm (surgery again) then came back under my left arm with revenge. I had my whole under arm removed and put on a wound vac to help heal. I thought I was done but it came back 8 yrs later on my pelvic bone area and it was surgically removed along with my groin and under my vagina. I have a hole the size of a child's football that can't be stitched up. a week after my release from hospital I was taken back with major infections and stayed there another 9 days. I am uncomfortably home, by myself and having great pity parties.
There are many websites that explain HS. Google Hidradenitis suppurativa.


Posted by @sandig, Jan 1, 2015

I started using OTC soy estrogen called Soy Care and it has helped me tremendously....other brands did not work. also a good FB support group is out there ..much helpful info from people going through the same thing. hope this helps.

just type in Hidradenitis Suppurativa support group on FB search.


Posted by @autumnleaves, Fri, Jul 15 at 12:14am CDT

I had one really large one on the back of my neck Jeanne Ann ... and so far it hasn't come back and it was the size of a extra large egg. It kept coming back over and over and each time, it got bigger and bigger. But it was more of a cyst consistency and less like the HS breakouts I constantly have. My doctor found an ointment that helps mine heal at least and takes a bit of the pain out of it but no matter what I do, it's just painful all the time. My dermatologist wouldn't do any surgery on the HS under my arms or in my groin area because he said, it probably would come back. And removing the sweat glands opens you up to more of a chance of cancer. So, still dealing with the HS and stay in as much as possible and I agree ... it's hard not to have pity parties because folks just don't get why I can't spend time out in the heat with them and think getting out of the house will help. I can have lunch with a friend but can't do anything physical or that keeps me outside for any length of time or I'm miserable. I never realized that so many people suffer with it. And having PCOS makes it worse even in the post menopausal stage that I'm in right now. Guess the hormones being messed up is bad for us ladies in more ways than one.


Posted by @andrewsta02, Dec 22, 2011

I was diagnosed in July with HS. I have been diagnosed as a diabetic for 5 years. I have tried many things in this short amount of time. My dermatologist thinks I should seek laser treatment, says my insurance will not cover it but has not given me any help in finding a place to seek this type of treatment. From all the blogs that I have read removal of the skin with skin grafts seems to be the most effective for that area but Iike what has been mentioned it most likely will come back in other areas. My HS is severe, I have it everywhere that skin touches skin and I would be happy just to have one area not in pain and deformed looking.


Posted by @autumnleaves, Fri, Jul 15 at 12:17am CDT

Mine is severe as well .... stage 4 from what I can tell and I have them everywhere that skin touches skin so I empathize with you. It's painful and no relief. Do do skin grafts and anything like that ... it will just come back. I've had HS since puberty ... I'm 60 ... so I've had it for 45 years+ and it only gets worse as you get older. So sorry you are suffering with it as well.


Posted by @jglover7, Jan 25, 2012

I was diagnosed with HS last year, and I have tried multiple remedies, antibiotics, and creams for relief. I only have HS in one area, and it is on my groin. It is the most painful thing that I have ever experienced and I would not wish it on my worst enemy. I have tried Keflex, Minocycline, and now they have me on Doxicycline. I also tried various vitamins, tea tree oil, hot presses, epson salt, various creams and ointments, etc. I had a follow up appointment with my dermatologist last week, and he prescribed me to a steroid cream called Vanos. We had tried steroid creams before, as I had used Halog to try to get some relief. My dermatologist said that he had never used Vanos on someone with my condition, but it was worth a shot if I was willing to try it. (of course I was.) Well, I used it for the first time last Thursday night. Of course, with something like this, it is frustrating to not see improvement immediately. But, come Sunday morning, half of my knots were flat, and I have continued to see improvement since. Here it is Wednesday afternoon, and I rode my bicycle yesterday completely pain free.:) 90% of my knots are flat, and I do not hurt at all. If you would like to try this, I will tell you what all I do on a daily basis: I take 300mg of Doxicycline (100mg 3x daily), I wash in the shower with Hibiclens Antimicrobial wash (you can get this at drug stores, it comes in an aqua colored bottle), throughout the day, I will use an antimicrobial foam soap to clean myself, it is called H2Ocean, and you can purchase it at tattoo parlors, it is generally for tattoos, but can be used for first aid purposes, and I apply the Vanos generously to the area at least 3x daily. In under a week I have had drastic improvement. Best of luck to you. I will be praying for you, as I know this is extremely difficult to deal with.


Posted by @drew1991, Mar 12, 2012

Ive had HS for 6years now ive finally got some control over this ive learned for me its about the soap I use hibiclens can be bout at any pharmacy two shower a day laundry soap uncented avoid stress at all cost and avoid hot weather for an extended amount of time for me sweating also starts my flare ups, if ur getting them in ur waist line or igroin inside of ur legs try not to wear tight pants ive also realized dairy products not a good idea its truely amazing the wide range of things that can trigger this I dont kno if this will help you but it works for me ull eventually find somthing that will work for you

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Posted by @drew1991, Mar 12, 2012

Dont bother with atibiotics jus a waist of money they dont work an never will sorry for the mis spelling ^


Posted by @msdodo987, Nov 15, 2012

I was finally diagnosed with HS last month when I went to the hospital. I was given Keflex and Bactrim, which I took for ten days. It was getting better until I stopped taking them. Now it's getting back to the way it was before I even started the meds.


Posted by @colleenyoung, Fri, Jul 15 at 4:03pm CDT

Thanks for reactivating this discussion @autumnleaves. I hope @midnight @mbrittain @sandig @drew1991 @msdodo987 and the others sharing here will return to update us on how things are going.

@autumnleaves how do you explain to well-meaning friends and family that "getting out" is not what you need and that it doesn't help?


Posted by @autumnleaves, Fri, Jul 15 at 7:58pm CDT

Those that are close to me, friendship wise, know about the disease but still think that "depression wise", getting me out is the solution and don't stop to realize that in the heat, it's a sentence for more sores. But I think it's more that they are just trying to help and don't know how. When I do turn them down, I talk about how that will affect me, unfortunately, but that I appreciate their concern. My family completely understands and doesn't put me in that spot. In fact if they think it will be the slightest warm, they are looking for solutions to the situation. I'm blessed!!


Posted by @autumnleaves, 5 days ago

I try to tell them that getting out in the heat only makes the sores come more rapidly because the exposure clogs pores that I can't reach and causes more sores. Getting out and about does help the whole depression aspect some, but what I go through to make that possible isn't worth it. I've been told to go gluten free and hundreds of other things that will cure it and of course none of them work. The issue is not what I eat, or what I try to put on it or bathe in ... it's an issue of large sweat glands and clogged pores with as little as a hair that doesn't come through the skin. No matter how many times I explain this, friends just don't seem to get it because they don't understand it for some reason. It's frustrating but I've gotten to the point where I can't help that they don't understand, I just deal with it and push on.


Posted by @kanaazpereira, 4 days ago

Hi @autumnleaves,
You are absolutely right: living with a chronic skin condition like HS is not just about physical symptoms; it can have social, emotional challenges as well, You have already taken a major step by explaining your condition to your friends and family, and by communicating your reasons for being reluctant to go out.
Thank you for keeping this conversation going.

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