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Anyone else have Hidradenitis suppurativa?

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Old 05-30-2007, 09:49 PM   #1
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Default Anyone else have Hidradenitis suppurativa?

Just curious if I was the only person on here that has this skin problem?

I have it mainly on my upper inner thighs, but occasionally on my underarm or breast.

Has anyone noticed any improvements with weight loss?
I think having this issue makes it harder to get a good workout in I am so sick of putting in two or three really good workouts then getting slidelined because I have a new lesion develop, I try to shower ASAP after working out too!

I would love any tips on managing this problem. Thank you
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Old 05-30-2007, 10:38 PM   #2
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I have it under my breasts. I'm not sure what mine is called but my doctor told me it is very common where skin meets skin and it is NOT because of not washing. He gave me an antifunal cream and it was gone in a week.

I hope you find something.
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Old 06-01-2007, 12:35 AM   #3
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I have it, mainly in my underarms, but occasionally in my groin area. It's not fun, but I've learned to live with it. Triple antibiotic cream helps with the pain and pressure, they have some which has a numbing agent in it, and that helps. If a cyst gets too painful I steralize a needle and lance it. I've never had it so bad I was unable to exercise. You can walk, or other simple types of activity. Just don't wear reveiling clothes and put a bandaid or larger pad on it and keep going. Yes losing weight does help, but even thin people can get it.
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Old 06-01-2007, 10:18 AM   #4
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Quote:
Originally Posted by Bette k View Post
I have it, mainly in my underarms, but occasionally in my groin area. It's not fun, but I've learned to live with it. Triple antibiotic cream helps with the pain and pressure, they have some which has a numbing agent in it, and that helps. If a cyst gets too painful I steralize a needle and lance it. I've never had it so bad I was unable to exercise. You can walk, or other simple types of activity. Just don't wear reveiling clothes and put a bandaid or larger pad on it and keep going. Yes losing weight does help, but even thin people can get it.
You're absolutely right, hidradenitis suppurativa has nothing to do with being overweight. I know a lot of skinny people with HS.
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Old 08-19-2011, 01:57 AM   #5
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Quote:
Originally Posted by Bette k View Post
I have it, mainly in my underarms, but occasionally in my groin area. It's not fun, but I've learned to live with it. Triple antibiotic cream helps with the pain and pressure, they have some which has a numbing agent in it, and that helps. If a cyst gets too painful I steralize a needle and lance it.
Thank you! I had not thought of using triple antibiotic cream, but it makes sense! I have just recently discovered that what I have is Hidradenitis suppurativa and I don't want to go to the doctor, so I am trying all the home care methods and to lose weight to see if that helps!
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Old 08-19-2011, 02:07 AM   #6
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Losing weight did definitely help me. I do still have some scarring and the tracts still exist, but as I got smaller, they became less frequent, and now it has to be at least 3 years since I've had a single flare up.

It doesn't help everyone with HS, but it definitely can for some.
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Old 09-29-2011, 04:15 PM   #7
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I have had this for years. I also have PCOS. Apparently there are many women with both problems and I believe there is a hormonal connection. Do you get a flare up around your lady time? I do. When you're stressed? I do.

Losing weight helped me because I changed my diet which ultimately changed my chemistry. See below.

The problem is that there's no real cure and therefore no one way to solve this infuriating problem.

My bumps have calmed down almost into remission with a few changes:
1. Cut out dairy and sugar: My dermatologist recommended this to me because of the extra hormones and insulin they put into your body which can cause inflammation.
2. Got hormones in check: take birth control and another hormone blocker
3. IF I get a bump, I immediately book an appointment with my derm to give me a shot of cortisone right into the bump. Cortisone usually immediately calms them down.
4. I pay attention to the bumps to make sure they don't get a secondary infection (open sores can do that) which can be dangerous.
5. I also did laser hair removal...and I'm not saying it was the reason I rarely get bumps anymore but I saw a benefit to it.
6. Weight loss is good for your body, gets you more balanced and when there's less skin friction, you're less likely to end up with irritation or secondary infections.

It's a painful (physically and emotionally) disease but it's good to know that you're not alone and there's hope to find something that works for you!
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Old 09-29-2011, 09:42 PM   #8
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Quote:
Originally Posted by SeattleSouthBeach View Post
I have had this for years. I also have PCOS. Apparently there are many women with both problems and I believe there is a hormonal connection. Do you get a flare up around your lady time? I do. When you're stressed? I do.

Losing weight helped me because I changed my diet which ultimately changed my chemistry. See below.

The problem is that there's no real cure and therefore no one way to solve this infuriating problem.

My bumps have calmed down almost into remission with a few changes:
1. Cut out dairy and sugar: My dermatologist recommended this to me because of the extra hormones and insulin they put into your body which can cause inflammation.
2. Got hormones in check: take birth control and another hormone blocker
3. IF I get a bump, I immediately book an appointment with my derm to give me a shot of cortisone right into the bump. Cortisone usually immediately calms them down.
4. I pay attention to the bumps to make sure they don't get a secondary infection (open sores can do that) which can be dangerous.
5. I also did laser hair removal...and I'm not saying it was the reason I rarely get bumps anymore but I saw a benefit to it.
6. Weight loss is good for your body, gets you more balanced and when there's less skin friction, you're less likely to end up with irritation or secondary infections.

It's a painful (physically and emotionally) disease but it's good to know that you're not alone and there's hope to find something that works for you!
I recently self diagnosed myself after I thought these had to be more than really bad ingrown hairs, I get them on the insides of my thighs. I'm not sure if I'm ready to go to the doctor as I haven't had any flare ups lately. Thank you for your tips. I've had a tubal ligation but have seriously considered going back on the pill b/c my body feels kind of out of whack for the last 2 years since last pregnancy. I'm only 32 but already feel my hormones turning on me.
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Old 03-18-2013, 09:12 AM   #9
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I have HS as well. Have had it for about 5 years now, and it just keeps getting worse for me. I'm mostly homebound because of the pain, and am getting very depressed. I know losing weight won't fix it, but maybe it will get me feeling a little better overall if I'm healthier.

To those asking what to do about it, HS is a lifelong, progressive disease. Its suspected as being Autoimmune, and there's not a whole lot of research being done into finding an effective treatment. Depending on what stage you're at, surgery might help reduce the severity. Antibiotics generally don't help unless you have an active bacterial infection in a wound or lump. Some have found that steroid injections can be quite helpful. Others have been put on biologic drugs like Humira, which has been shown to improve symptoms and slow progression.

Everyone is different, and no one thing will help everybody. It just depends. Best piece of advice I can give is this: If your doctor doesn't know about HS or just starts throwing antibiotics at you without proof of a bacterial infection, seek a new doctor. There's a terrible amount of misinformation out there, and too many doctors are using bad info from outdated sources.
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Old 01-11-2014, 12:33 AM   #10
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I know this is an older post, but I just ran across it. I have dealt with HS for several years, some worse than others. Here is what I know to work for me.
*wash with antibac soap
*blowdry everything after showering
*wear as little elastic as possible in trouble areas
*longer undies (such as men's knit boxer-briefs help to absorb sweat and also cut down on skin-to-skin friction/sticking
*stress makes matters worse
*so does smoking
*so did using the sauna
*****FIND OUT WHAT FOODS YOU ARE ALLERGIC/SENSITIVE TO.....AND STOP EATING THEM!!!! I react to uncultured dairy, onions, peanuts, and possibly garlic. When I eat any of those things, I can expect to spend at least the next 4-5 days with escalated symptoms, as well as increased pain in my muscles and joints and connective tissues. I didn't make the connection between food intolerance and HS until I ended up in excruciating pain after eating a lot of peanut brittle. Knowing this has helped me to be more mindful of what I eat and the effect it has on less-obvious physical issues.
*Taking vitamin D, Claritin and Aleve daily has helped with symptoms, as they help with the allergic and inflammatory response. On really bad days, I also include ranitidine, which works with the histamine response in the digestive tract.

You may have different results, but these are the things that have helped me. A few years ago, I almost always had lesions....now, it is almost exclusively after I have eaten something I know I ought not eat.
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