Hidradenitis suppurativa

Posted by Midnight @midnight, 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?

Liked by chloe`123, Msdodo987

Hi @michelle1975 and welcome to Connect. You ask if fellow members still need guidance with their journey with hidradenitis suppurativa. Would love to hear your story so others can learn from it.

What's your experience with hidradenitis suppurativa? What has helped you?

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Hi. I was dx with HS following a mass under my arm from my yearly gyn exam. It was removed and was very hard to heal the wound. It was basically a golf ball. Disgnosed HS. I was already vegan so i stopped nightshades and wheat. Over the next two and a half years i would get a lump either in my other arm pit area or my inner thigh after ovulation. I used clindamyacin ointment daily as a preventatuve and a 6-8 week dose of oral clind to disrupt the dusease and then i would be lump free for one or two menstrual cycles then back again and back on the pills. Never a lump where original one was remived. Then my other arm finally created a tennis ball sized tumor. It was removed and oh my so much skin removed my shoukder is frozen i cant move it. Im still recovering from that surgery when now the lump has appeared in my groin!!! And for the first time it has ruptured? Ive never had the HS lumo ‘drain’ ? But obv ive read it can? I am using ckinda ointmebt on it and tsking pills. The inner thigh rupture js awful pain. I am intersted in knowing what is done fir tbr open wound draining? How does that ‘go awsy?’ What can i do to treat that? Many thanks. God bless any one reading this who has this dreadful disease. Praying for a cure!

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Hi @bellamama and welcome to Connect! It sounds awful having lumps continue to appear no matter what you try and having so much skin removed that you can't move your shoulder.

You mentioned in your post that you are interested in open wound draining here is some more information on what that entails: https://www.fairview.org/sitecore/content/Fairview/Home/Patient-Education/Articles/English/h/i/d/r/a/Hidradenitis_Suppurativa_Incision_and_Drainage_116169en

@ginpene05 @mayflower25 and @autumnleaves have experience with hidradentitis suppurativa and may be able to provide support for you as you search for ways to treat it.

Have you spoken to your doctor about open wound draining? Also, what did they say would be the next course of action for the lump that has ruptured?

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I haven't written in a while and I apologize for that. Sometimes talking about it makes it more depressing for me since it's a daily battle in my life and I'm never clear of it and always in pain with the sores. If any of you haven't read my initial post, it's back on November 7, 2012 and I've had Hidradenitis Suppurativa since puberty but did not know what it was till about 20 some years ago. Doctors called it acute acne or some other names that really don't matter now. I've had the sores lanced, had surgery on them, and then just let them run their course and in every case, the sores come back because they have a tendency to create tunnels under the skin and they pop up every where and even where you've just had a sore so you get those, "what I call", ungodly bumped up purple scars. I'm 63 now and I have to say that the older you get, the more you get of them and in areas that cannot be bandaged or even antibiotic ointment put on. I'm post menopausal and I was hoping they would get better but I'm here to tell you they have not. The ointment that I've been prescribed by my family doctor who is wonderful an empathizes with me and this disease, is Mupirocin Ointment USP, 2% and it really does help and takes a good bit of the pain out of the sore as it goes through the process of either healing or opening up and draining and healing. I HIGHLY recommend it if you can get your doctor to prescribe it for you. This isn't a condition that is going to go away. If you are born with it, you are stuck with it because it's genetic and I got it by way of my mother. I have a daughter who has had just a few over the years and hers have cleared up nicely and I got her to use the cream for getting rid of scars and they've made them almost invisible. She doesn't have it like I did at her age and I doubt she ever will because hers isn't progressing like mine did. You'll get some that just come and go without rupturing and draining and then you'll get those that don't leave until they've ruptured and drain and I've had them all sizes from a "pea" size to the size of a "lemon" and I'm not exaggerating in the slightest and when that one festered up, I had layers of skin to slough off from the fever that was in it. I've had staph infection to set into some of them but never mrsa so do be very careful with them. If you get any that are very large, it's best to go to the doctor and get on an antibiotic to prevent it. I try not to use antibiotics too often because I don't want them to stop working. Right now I'm on Doxycycline because I've had so many that I felt my body needed to be flushed out. I'm also allergic to sulfur so that eliminates a lot of antibiotics that I cannot take that would hep the sores as well. There's no easy fix, you just have to find what works best for you. I've done all the soaps, creams, even did shots that were supposed to help and finally was told that removing the sweat glands was the best option and the dermatologist wouldn't do that because it opens you up to the possibilities of cancer developing. I do my best to stay out of the heat so I am inside a lot in air conditioning because the more I sweat, the more sores I get even if skin isn't touching other skin … they just come out of nowhere it seems. There's no other way to say it but to say, it's a never ending battle, and I really do empathize with any of you that suffer from this disease, because it's no fun whatsoever. Do look into the ointment I mentioned above because it really does help me. AND if you have difficulty with bandaids or bandages like I do, I can recommend 3M Medipore +Pad Soft Cloth Adhesive Wound Dressings 3.5" x 4" and I also use the 3 1/2 x 8 size as well. My skin is very sensitive and they don't irritate the skin around the sores or pull or tear at the healthy skin. They are the only bandages that I can use. I also quit using Tide detergent because it's very abrasive (was told to stop using it by the dermatologist) and I use Dove soap in the bathroom and Arm and Hammer Oxi Clean laundry detergent. If ANY OF THIS helps you, I'll be so happy, or if any of this information helps in the least. I've had HS for over 50 years now so I have 50 years of experience that I'd be glad to share in any way I can. Happy days to you folks with less days with sores rather than more days.

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I have been having some chronic unexplained health problems since June, and in preparation for my specialist's referral to Mayo, I put together a document with ALL my symptoms, including those likely unrelated. One of those was:

Frequent ingrown hairs in genital/rectal region, without hair removal: Started around 2009; abscess culture showed OSRA; recurrent although smaller problems since. Almost always have at least one ingrown hair in bikini area regardless of any recent hair removal of any kind; painful, inflamed red bumps that “pop” white pus and/or blood.

Happen to have three at the moment, and while looking up what the difference is when it pops blood vs. pus, I read about hidradenitis suppurativa for the first time. It honestly never occurred to me that this could be unusual or an actual health problem until I had started writing that list of symptoms and realized it still happened even when I didn't do any hair removal down there (my very first one, which was infected, the primary care had just told me it was an infected ingrown hair, and so that's what I've assumed they are always, and being in such a …. private… location, I've never mentioned it again/to any other doctor). After reading your stories, it sounds like I may not actually have it, or I have maybe an earlier stage, but it's at least inspired me to look into it further and realize it's NOT normal.

One thing I am curious about — does anyone who's been diagnosed with HS have an elevated CRP and/or ESR (inflammatory markers)?

A resource I found helpful/informative I want to share: https://www.hs-foundation.org/.

Some things I noticed mentioned in these posts are reinforced on that website: "Current studies indicate that HS is more common in females than males, at a rate of approximately 3:1." Many of the other illnesses experienced by the folks in these posts are commonly associated with HS, including PCOS, thyroid disease and diabetes; to confirm what somewhat else postulated, "hormonal imbalance has been suggested as a potential source of development for this disease as well." They mention Clindamycin cream as being effective like someone else noted. Just a lot of good informartion, including a physician search that I fouond a doctor on to call tomorrow and try to schedule an appointment.

Hope everyone's doing well!

REPLY
@peabody88

I have been having some chronic unexplained health problems since June, and in preparation for my specialist's referral to Mayo, I put together a document with ALL my symptoms, including those likely unrelated. One of those was:

Frequent ingrown hairs in genital/rectal region, without hair removal: Started around 2009; abscess culture showed OSRA; recurrent although smaller problems since. Almost always have at least one ingrown hair in bikini area regardless of any recent hair removal of any kind; painful, inflamed red bumps that “pop” white pus and/or blood.

Happen to have three at the moment, and while looking up what the difference is when it pops blood vs. pus, I read about hidradenitis suppurativa for the first time. It honestly never occurred to me that this could be unusual or an actual health problem until I had started writing that list of symptoms and realized it still happened even when I didn't do any hair removal down there (my very first one, which was infected, the primary care had just told me it was an infected ingrown hair, and so that's what I've assumed they are always, and being in such a …. private… location, I've never mentioned it again/to any other doctor). After reading your stories, it sounds like I may not actually have it, or I have maybe an earlier stage, but it's at least inspired me to look into it further and realize it's NOT normal.

One thing I am curious about — does anyone who's been diagnosed with HS have an elevated CRP and/or ESR (inflammatory markers)?

A resource I found helpful/informative I want to share: https://www.hs-foundation.org/.

Some things I noticed mentioned in these posts are reinforced on that website: "Current studies indicate that HS is more common in females than males, at a rate of approximately 3:1." Many of the other illnesses experienced by the folks in these posts are commonly associated with HS, including PCOS, thyroid disease and diabetes; to confirm what somewhat else postulated, "hormonal imbalance has been suggested as a potential source of development for this disease as well." They mention Clindamycin cream as being effective like someone else noted. Just a lot of good informartion, including a physician search that I fouond a doctor on to call tomorrow and try to schedule an appointment.

Hope everyone's doing well!

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@peabody88 One thing that I learned after having cirrhosis was that even the most unrelated symptoms may be related. The list of symptoms that I had and never thought anything about was pretty large – about 10 I believe. Now if there is anything, I mention it just to be on the safe side.
I know nothing about your condition, but I wish you well in combating it.
JK

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Hi @peabody88 and JK, Volunteer Mentor:

The thing about HS is that it is like acute acne, and has other names because it's misdiagnosed a lot. That was my problem, because for years the doctors called it (and even dermatologists) so many other things and I didn't know what I really had until I was already in stage 3 of the skin disease. I wish I had known so much sooner because then I might have found more solutions sooner to make it less painful to deal with. I was told that I was born with HS and that it probably came down through the genes from someone in the family (my mom) and there was really no cure, just things that could help me deal with it and make myself more comfortable. Sometimes the sores don't even come to a head, they just go away. Other times they fester and break and either bleed, have pus, or both and they always take a while to heal. Over the years I've gotten tunnels under the skin because I've gotten them over and over again in the same places, and it's just the nature of the disease to run tunnels under the skin. I have diabetes (but I'm under control without insulin and just pills and a shot weekly) and I didn't have diabetes till recently. I actually was hypoglycemic for many years. I do have PCOS, had difficulty with periods and getting pregnant and sustaining the pregnancy (had 2 miscarriages but 2 successful pregnancies), and I had hormonal imbalances. I was told that HS does contribute to the other health issues and they affect the HS as well. All I know is what I've learned over the years that helps the painfulness of the sores and how to hopefully keep from getting staph infection along the way. It's a difficult disease to even talk about because it's embarrassing, has an odor to it at times, and can very easily keep you home and not want to go anywhere. So you have to look for that silver lining every day so you don't become a hermit. I'm always around if any of you just need to talk. I've been told it all, tried it all, and pray daily that they'll find a cure. 🙂

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@autumnleaves

Hi @peabody88 and JK, Volunteer Mentor:

The thing about HS is that it is like acute acne, and has other names because it's misdiagnosed a lot. That was my problem, because for years the doctors called it (and even dermatologists) so many other things and I didn't know what I really had until I was already in stage 3 of the skin disease. I wish I had known so much sooner because then I might have found more solutions sooner to make it less painful to deal with. I was told that I was born with HS and that it probably came down through the genes from someone in the family (my mom) and there was really no cure, just things that could help me deal with it and make myself more comfortable. Sometimes the sores don't even come to a head, they just go away. Other times they fester and break and either bleed, have pus, or both and they always take a while to heal. Over the years I've gotten tunnels under the skin because I've gotten them over and over again in the same places, and it's just the nature of the disease to run tunnels under the skin. I have diabetes (but I'm under control without insulin and just pills and a shot weekly) and I didn't have diabetes till recently. I actually was hypoglycemic for many years. I do have PCOS, had difficulty with periods and getting pregnant and sustaining the pregnancy (had 2 miscarriages but 2 successful pregnancies), and I had hormonal imbalances. I was told that HS does contribute to the other health issues and they affect the HS as well. All I know is what I've learned over the years that helps the painfulness of the sores and how to hopefully keep from getting staph infection along the way. It's a difficult disease to even talk about because it's embarrassing, has an odor to it at times, and can very easily keep you home and not want to go anywhere. So you have to look for that silver lining every day so you don't become a hermit. I'm always around if any of you just need to talk. I've been told it all, tried it all, and pray daily that they'll find a cure. 🙂

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@autumnleaves I am so sorry for anyone dealing with something so pervasive. I can only imagine how discouraging that must be. Even when I was dealing with cirrhosis I did not have physical problems from it on a daily basis.
I too will pray for a cure to this. Do you know what percentage of the population is affected by it? Of course the greater the number the more apt there is to be research on it.
Speaking of detergents, I was thinking, would Dreft also be a good one to use? It's the one that is suggested for babies so I would assume it must be pretty gentle. Tide has always been known as being somewhat irritating because it's pretty strong, but I think they have other more gentle versions of it now.
JK

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@contentandwell

@autumnleaves I am so sorry for anyone dealing with something so pervasive. I can only imagine how discouraging that must be. Even when I was dealing with cirrhosis I did not have physical problems from it on a daily basis.
I too will pray for a cure to this. Do you know what percentage of the population is affected by it? Of course the greater the number the more apt there is to be research on it.
Speaking of detergents, I was thinking, would Dreft also be a good one to use? It's the one that is suggested for babies so I would assume it must be pretty gentle. Tide has always been known as being somewhat irritating because it's pretty strong, but I think they have other more gentle versions of it now.
JK

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@contentandwell Thanks so much for your compassion and encouragement. I looked up the percentage on those suffering from HS and the only percentage I found was put out in 2007 ~ HS affects at least 1% possibly 4% of the global population. I'm sure that has changed since 2007 but still don't think it's a large percentage. And I noticed that it said it rarely affects people past 55 and I'm 63 and it's alive and well in me. But I tend to be in the "rare" stage … haha I tried Dreft and wasn't able to use it. The only soap I've found that I can use on my skin is Unscented Dove, and then Arm and Hammer's Oxi Clean on my clothes. I'm post menopausal but the PCOS still plays a part in it which surprised me. My primary care doctor feels so badly for me because he can't help me but occasionally he puts me on an antibiotic that helps clear up obstinate ones and it does help, just doesn't always work on the more invasive ones. So basically when you have a disease like this with no cure, you learn to live with it and press forward and thank God that it's not worse. I choose the high road, but not to say that there aren't days when it gets the best of me and I do feel sorry for myself. Thanks for responding and caring!! 🙂

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@autumnleaves

@contentandwell Thanks so much for your compassion and encouragement. I looked up the percentage on those suffering from HS and the only percentage I found was put out in 2007 ~ HS affects at least 1% possibly 4% of the global population. I'm sure that has changed since 2007 but still don't think it's a large percentage. And I noticed that it said it rarely affects people past 55 and I'm 63 and it's alive and well in me. But I tend to be in the "rare" stage … haha I tried Dreft and wasn't able to use it. The only soap I've found that I can use on my skin is Unscented Dove, and then Arm and Hammer's Oxi Clean on my clothes. I'm post menopausal but the PCOS still plays a part in it which surprised me. My primary care doctor feels so badly for me because he can't help me but occasionally he puts me on an antibiotic that helps clear up obstinate ones and it does help, just doesn't always work on the more invasive ones. So basically when you have a disease like this with no cure, you learn to live with it and press forward and thank God that it's not worse. I choose the high road, but not to say that there aren't days when it gets the best of me and I do feel sorry for myself. Thanks for responding and caring!! 🙂

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@autumnleaves I think no matter how hard we try, we all have those days when our ailments get the best of us. For me, these days it's my hearing. In social situations I often cannot hear/understand a thing. Last year when our kids were home for the holidays and we all gathered in the family room with many conversations, I had to excuse myself and explain that since I was totally in left field I was going to use my IPad.
After mentioning Dreft, it occured to me that it must have something strong in it, it was the only thing that got out formula stains!
That's a small percentage of people who are affected. Hopefully you will still reach an age where it will be less troublesome.
Are there any real experts on it whom you could go to?
JK

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@contentandwell

@autumnleaves I think no matter how hard we try, we all have those days when our ailments get the best of us. For me, these days it's my hearing. In social situations I often cannot hear/understand a thing. Last year when our kids were home for the holidays and we all gathered in the family room with many conversations, I had to excuse myself and explain that since I was totally in left field I was going to use my IPad.
After mentioning Dreft, it occured to me that it must have something strong in it, it was the only thing that got out formula stains!
That's a small percentage of people who are affected. Hopefully you will still reach an age where it will be less troublesome.
Are there any real experts on it whom you could go to?
JK

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@contentandwell – Do you have hearing aids/are you seeing an audiologist? There have been a LOT of improvements in those technologies in the past few years — my mom has been on them for at least ten, and they're VASTLY improved since then. She just got a set of hearing aids that actually connects to her phone via bluetooth so it comes right to her ears to help her hear better. There's a TV booster as well that connects to her hearing aids so she can turn up the volume for herself but it goes directly to her hearing aids so the TV's not blasting. I think this is the brand she got: https://www.oticon.global/hearing-aid-users/hearing-aids/accessories/connectline. But I'd make an appointment with your audiologist if you're having problems, especially if you haven't been in a while. There's truly been huge improvements in the technology that should help. Good luck!

Liked by lorrainechavez

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@peabody88

@contentandwell – Do you have hearing aids/are you seeing an audiologist? There have been a LOT of improvements in those technologies in the past few years — my mom has been on them for at least ten, and they're VASTLY improved since then. She just got a set of hearing aids that actually connects to her phone via bluetooth so it comes right to her ears to help her hear better. There's a TV booster as well that connects to her hearing aids so she can turn up the volume for herself but it goes directly to her hearing aids so the TV's not blasting. I think this is the brand she got: https://www.oticon.global/hearing-aid-users/hearing-aids/accessories/connectline. But I'd make an appointment with your audiologist if you're having problems, especially if you haven't been in a while. There's truly been huge improvements in the technology that should help. Good luck!

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@peabody88 Thanks for the suggestion, but yes I do have hearing aids, I started wearing them in 2004 I think. I have what I believe is the best that Oticon makes now, and my phone also streams right into my hearing aids, both for phone conversations, and for my music which I use when I do my water jogging — my head is never near submersion. Unfortunately I lost something in the clarity in my hearing so unless something is clear, and preferably isolated I have a hard time. I also did purchase the "connect clip" recently. A person wears it and it's basically a microphone that goes right into my hearing aids. I use it in one of my water classes because that instructor does not go in the water and it makes all the difference. Her voice is high and that's my worst frequency, so now with that I can hear what she says. I used to have to just watch her and other people in the class to know what to do. It's also good in restaurants to hear my husband and I used it in the car when we were on vacation, to hear what my son was saying while I was in the back seat.
Losing clarity can be a problem that comes with age, but there is also some evidence that hearing problems can be caused or made worse by cirrhosis and/or the immunosuppressants.
On Facebook there is a private group for wearers of these Oticon hearing aids. It's been helpful with problems.
Thanks again, I appreciate your concern.
JK

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@contentandwell

@peabody88 Thanks for the suggestion, but yes I do have hearing aids, I started wearing them in 2004 I think. I have what I believe is the best that Oticon makes now, and my phone also streams right into my hearing aids, both for phone conversations, and for my music which I use when I do my water jogging — my head is never near submersion. Unfortunately I lost something in the clarity in my hearing so unless something is clear, and preferably isolated I have a hard time. I also did purchase the "connect clip" recently. A person wears it and it's basically a microphone that goes right into my hearing aids. I use it in one of my water classes because that instructor does not go in the water and it makes all the difference. Her voice is high and that's my worst frequency, so now with that I can hear what she says. I used to have to just watch her and other people in the class to know what to do. It's also good in restaurants to hear my husband and I used it in the car when we were on vacation, to hear what my son was saying while I was in the back seat.
Losing clarity can be a problem that comes with age, but there is also some evidence that hearing problems can be caused or made worse by cirrhosis and/or the immunosuppressants.
On Facebook there is a private group for wearers of these Oticon hearing aids. It's been helpful with problems.
Thanks again, I appreciate your concern.
JK

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@contentandwell , what's the name of that Facebook group? I'll have to share that with my mom.

Glad you found something that seems to be helping, if not fully fixing it. And seeing the technology improvements in the past few years, I have no doubt in a few more it will be even better!

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@contentandwell

@autumnleaves I think no matter how hard we try, we all have those days when our ailments get the best of us. For me, these days it's my hearing. In social situations I often cannot hear/understand a thing. Last year when our kids were home for the holidays and we all gathered in the family room with many conversations, I had to excuse myself and explain that since I was totally in left field I was going to use my IPad.
After mentioning Dreft, it occured to me that it must have something strong in it, it was the only thing that got out formula stains!
That's a small percentage of people who are affected. Hopefully you will still reach an age where it will be less troublesome.
Are there any real experts on it whom you could go to?
JK

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@contentandwell None that don't cost an outrageous amount to go to and aren't covered by my insurance and I only know of one. I also know of a few that have gone to her and their treatments aren't helping at all. My dermatologist told me that it would require me to have my sweat glands removed and he said he would not perform that surgery because of the dangers it opened me up to. And then he wanted to put me back on the pill (post menopausal/husband had prostate cancer twice, surgery and radiation) … can we say it would be the immaculate conception if I were to get pregnant ……. in order to do a new treatment and in researching that treatment and women in my age bracket, it was scary what was happening to these women in other organs as a result of the treatment so I decided I'd rather deal with a disease at least I know something about than to head into the unknown with poor results. 🙁

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@peabody88

@contentandwell , what's the name of that Facebook group? I'll have to share that with my mom.

Glad you found something that seems to be helping, if not fully fixing it. And seeing the technology improvements in the past few years, I have no doubt in a few more it will be even better!

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@peabody88 they really are always getting better, but unfortunately they are so costly! When I got these, almost 2 years ago I paid $6000 and supposedly they gave me a break on the price!
The name of the Facebook group is Oticon Opn Hearing Aids. It can definitely be helpful.
JK

Liked by peabody88

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