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Old 07-01-2010, 12:51 AM   #1
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Unhappy hidradenitis-suppurativa

Hi! I was wondering If anyone here has had this and might could answer a couple of questions. This is the first time I've ever had this. I had 2 lumps under my left armpit. One was pretty small and been there for awhile but, never grew. Then I got a huge one under that one where your lymph nodes are. It grew pretty big. Then it started draining. I let it go for a couple of weeks. I figured it would go away. When it just kept draining and was so painful I finally went to the Dr on June 19th. He lanced them and packed them. I had a 99 fever that day. He also gave me 10 days of Bactrim 800 mgs for 10 days, with 1 refill. Dr had me go to the ER on June 22nd to have the packing removed. The Dr there said the wounds looked very good, took the packing out. That day my fever was up to 101. They put a bandage back on because the big lump was still draining. Told me just to stay on the antibiotics. It's been almost 2 weeks and it is still draining yellow stuff. When I change the bandage, it doesn't look like the wounds are infected, just still draining. Today I just started on the second round of 10 day antibiotics. My question is, has anyone ever had one cut, drained and packed? Is going on 2 weeks normal for the yellow drainage to still be coming out? I'm really worried because I have never had this before. I am also a diabetic but controlled with diet but, my blood sugars hasn't been very good in control lately. Is 2 weeks too long for it to still be draining? Should I be worried? Thank you for any help!!!

 
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Old 07-03-2010, 06:20 PM   #2
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Re: hidradenitis-suppurativa

Hi Shadow. I have this disease, as well, and yes, I've had MANY of them cut out.

If I were you, I would go back to your doctor, or the ER just to see if there's something they might be able to do for you, especially since you are diabetic. Unfortunately, there is no cure for this disease, and most doctors give antibiotics that don't really help. I currently have several lesions that have been "open wounds" since the end of March, and the only thing I get from doctors is, "Just keep taking the antibiotics." My concern with you is the diabetes, because it's an autoimmune disease, and more research is leaning toward HS being one, as well.

I hope that helps

Last edited by Administrator; 07-04-2010 at 02:48 PM.

 
Old 07-05-2010, 12:21 AM   #3
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Re: hidradenitis-suppurativa

Thank you! I called the Dr and he said it was normal to still be draining because it was deep. It looks like it's healing pretty well, but it's still pretty painful. Thanks for replying, I will do some research on this. The Dr also did a Culture and said I had 2 different types of Staph Infection in there, and for me to just keep taking the antibiotics. This is all new to me, but I am not liking it very much! That is horrible to still have open wounds since March!

 
Old 09-03-2010, 11:23 AM   #4
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Re: hidradenitis-suppurativa

Interum's right, there is no cure, and there's little Food items that are associated with triggering an HS reaction in the endocrine system include: sugar, gluten (wheat products), dairy, and eggs. Although it sounds like you're already monitoring what you eat, some of these might have been missed? It won't make them go away entirely, but can greatly reduce incidence.

I'm about to start an elimination diet along these lines to try to reverse some of the damage to my body. My HS has steadily progressed over the last decade, and it's begun to affect my mobility. I have never, however, had mine lanced. It often causes more scarring and damage, and I avoid it. Antibiotics only work if you have a secondary infection (likely what caused your fever), and they don't actually treat the cysts themselves.

I have found something that works, through years of trial and error. Manuka honey. Well, really, any raw honey will work, but I use it like a poultice on cysts. Any cysts that have opened, let them drain for a few days, because they need to reduce in size, or else healing the skin won't do you very much good. Keep the area cleaned well (shower daily, give the area extra attention running water over). After a few days, take a small dollop (about a teaspoon) of honey and place it on a sterile gauze pad. Apply to the area directly. I do this at night, so I sleep with the honey doing its work. It may take a few applications, but I've had the area heal up within three days, even cysts that were open for months and looking necrotic.

There's another treatment I have yet to try, which involves seeing an acupuncturist. I have a friend in training, and I told her I've had a cyst open for four years (in an awkward location, and doesn't respond to the honey except to go from draining pus to bleeding). She said that they have a method called "circling the tiger" where in they inject B-12 in a circle around the area. This requires several needles, which squicks me, but at this point it sounds a lot better than the incredibly invasive surgery my D.O. said I would need to remove the entire mass.

So, if you're just having symptoms, the best thing you can do is to start making changes now to minimize your likelihood for incidence. Avoid the cutting; especially avoid lancing if the cyst hasn't decided to open on its own, sometimes they'll dissolve on their own without opening. They scar, which is why I quit modeling ten years ago, but it's better than increasing the likelihood of permanent sinuses.

I'm afraid you'll have to start doing some research into this disease, as even my own doctor who diagnosed me with it, knows less about the illness than I do. Also, avoid the experimental radiation treatments. Don't make yourself even more sick!

 
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Dee1978 (02-19-2011)
Old 02-19-2011, 03:02 AM   #5
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Re: hidradenitis-suppurativa

Hi, I have also had this disease for 10 years. Have had plastic surgery on both armpits and recently on my groin, each time having a skin graft to cover the removed area. As someone else said, medical professionals dont know much about this or how to treat it. I'm not diabetic or overweight which are some of the factors associated with HS. However, like most others, stress definitely makes it worse. I've been thinking about how my life was prior to the onset of HS and know I was under extreme amounts of stress. And with my recent need for surgery on the groin, major stress was also the situaion in my life. Im trying to find out if others can link any very stressful events occuring in their lives months or years before HS started for them. Many sufferers speak of stress making it worse but how about stress before it started? Can you make a link? Please let me know if you can as Post Traumatic Stress can cause huge problems for the body...Maybe a common link with other sufferers may shed some light as to the cause of it all.
Best wishes,
Dee x

 
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Cyrne (02-19-2011)
Old 02-19-2011, 10:58 AM   #6
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Re: hidradenitis-suppurativa

Yes, there's been a lot of stress in my life. I developed PTSD as a teen after my mother and I left my step-father. I'd finally told her that he'd been molesting, raping, and prostituting me for the previous ten months (just after I started menstruating). He had been extremely wealthy, and had lost much of his wealth after a health condition laid him out a while. We were getting back on our feet, but the stress sent him over the edge and he took it out on me. When we moved to live with other family, we were extremely poor for the first time since my infancy. I was having a hard time dealing with what I'd been through, and I started gaining weight despite my spartan diet and constant exercise (student dancer, walked everywhere, swam). School was hard socially, I hated high school like most teens, and got into college early, but I no longer cared about my academics.

My mom left the country to live with some guy she'd met online just before I turned 19, and I ended up moving in with my new boyfriend. I got a job modeling, and another job part-time working for a call center. I isolated myself, ate terrible food, and threw my life into the virtual world of MMORPGs. That's when the cysts began. By the end of our four year relationship, I had an infant, no money, and a partner who decided she (trans) didn't want to be with me anymore. I tried living with my girlfriend in another state, but her life was stressful and a struggle, and mine became even more so. Another move, more stress, another move, more stress. I started to get back on my feet when I started working and schooling at a community college, but I hated being away from my child and I hated coming home to a house of mixed personalities, some of whom despised me. Cysts kept getting worse. Moved a few more times, each with little income and roommates who were stressful to live with, and finally ended up getting a great job that changed leaders, the new director didn't like me, and I got fired for trying to do the job I'd been hired to do instead of the undefined job he wanted me to do but wouldn't put in clear terms.

Found a job and a place to live that were less stressful, but the physical toll, the commute, and the balancing act still put a lot of strain on me. Got into a program at the university I wanted to, took the summer off from work and lived off savings until school started, and spent two years nearly killing myself to keep an honors-level GPA while educating my child. My then/now partner's health (we'd moved in together four years ago) started to go south as did my own. I wasn't cooking at home as much as I had been, and I started having even more problems. Now that I've graduated and am working in the least stressful ways I can, I'm still having cysts and issues with HS.

I'm dealing with more than HS at this point, and have been slowly learning more about what's going on in my body, trying to discover why things hurt or get sick as they do and how to prevent it. I tried to apply for disability so I wouldn't have to worry about basic income, but I wasn't sick *enough* for them to think me incapable of making their minimum, something I've yet to achieve in the last five months since their decision to deny me. I'm paying rent by cooking the household meals and I'm getting a small amount from writing--not enough to save for a rainy day or make major changes--just enough to educate my daughter and pay for a few physical therapy sessions a month.

So yeah, there's a lot of stress. And I kept gaining weight, even when I was killing myself dancing. I've steadied around 260lbs., but it gets in the way and makes it harder with the HS and my mobility issues. No diabetes, I should note, and my heart is in good working order. A lot of those fat = death messages we receive are wrong. I eat well most days, and I'm conscious of my body's messages. That's the best I can do at this point.

 
Old 02-21-2011, 09:55 AM   #7
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Re: hidradenitis-suppurativa

I have a question regarding this condition...are these things like boils? I started getting these boil type things at the tops of my legs and some more personal areas and on occasion under my arms many years ago. I guess I was about 20 years old when I noticed the first one. It was so gross and disgusting I didn't tell anyone about it. In fact, after having had two recently I did finally talk to my GP about it. She said it's a bacterial infection and nothing to be upset over. I told her how they eventually come to a head and about the contents and how extremely painful these things are. She gave me a script for a cream to put on as soon as I get one. It's called Mupirocin and I've only had a chance to use it once but I think it worked quickly. You mentioned stress and I have thought for the last 30 years since I had that first sore that it could be a stress related thing. I considered diet too...I've been dieting for years..sometimes heavier than others. After menopause it seemed to have stopped for a long time but now and then I still get it. I've never had any lanced...never went to the doctor with these things...I know I should have but I was too chicken. I'm a very high anxiety/stress person and take medications for it so whatever it is I have is no doubt related to that. Is there a test for this to prove what it is??
Thank you,
Sharon

 
Old 02-21-2011, 10:52 AM   #8
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Re: hidradenitis-suppurativa

There's no test, per se. The best thing you can do is visit a physician with knowledge of HS--an endocrinologist, for instance--and ask about it. Some dermatologists can differentiate boils from HS, but you should show any swellings to a physician when you start to experience them. It doesn't sound as though the physician you saw was aware of the possibility of HS, and you could bring it up with her via phone or your next visit as well (along with printed material from web sites that discuss the disease).

While these cysts are quite unpleasant to experience, look at, or smell, I suggest doing a google *image* search for hidradenitis suppurativa and see if they look familiar. If they don't seem at all like what you're experiencing, the dermatologist may be the best route.

 
Old 02-21-2011, 11:12 AM   #9
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Re: hidradenitis-suppurativa

Quote:
Originally Posted by Cyrne View Post
There's no test, per se. The best thing you can do is visit a physician with knowledge of HS--an endocrinologist, for instance--and ask about it. Some dermatologists can differentiate boils from HS, but you should show any swellings to a physician when you start to experience them. It doesn't sound as though the physician you saw was aware of the possibility of HS, and you could bring it up with her via phone or your next visit as well (along with printed material from web sites that discuss the disease).

While these cysts are quite unpleasant to experience, look at, or smell, I suggest doing a google *image* search for hidradenitis suppurativa and see if they look familiar. If they don't seem at all like what you're experiencing, the dermatologist may be the best route.
Thank you for the advice. I did just check it out and saw a picture. That's not what my situation looks like at all. Mine looks like a boil when I get them. And it's just one. Thank you again.
sharon

 
Old 02-21-2011, 01:12 PM   #10
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Re: hidradenitis-suppurativa

A lot of those first images are of people progressed to Stage 3 of the disease. There are some single cysts that appear, but if you didn't find any images with similarity to your own illness, then you may find that what you have is far easier to treat than HS. Good luck to you!

 
Old 02-21-2011, 02:55 PM   #11
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Re: hidradenitis-suppurativa

I think its worth pushing the health professionals we are in contact with to try and assess our stress/anxiety levels, as well as any abonormalities with hormone levels. I spoke to nurse about this today, and she agreed that stress can actually cause hormonal imbalance. I know both are probably very difficult to measure, but it is worth the time and effort as difficult as it may be...if we happen to have somethings that are not in the 'normal' range we may have something to work with in terms of finding reliable treatments, preventions and cures. Some people have said that we may all have a predisposition to the disease. I dont know any relatives who suffer with this but it could be a possibility, again if that is the case then research needs to be carried out in order to find a prevention as no one would want any of their children to have to go through this. Im going to see my GP tomorrow, hoping to be referred to a Dermatologist who has performed research on HS. Although we may not be medically trained I'm sure we all have some instinctive ideas around what may have triggered this, and must do our best to try and get someone to look into it.

 
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