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?

@alyssajean

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

Jump to this post

I’m going to ask my doctor about this Methylpredsinolone dose pack and see if it is something I can use. I’m a diabetic but not on insulin yet but do take a shot to help control my blood sugar so not sure if I can take it but can’t hurt to ask. Thanks @mbrittain for talking about it. 🙂

REPLY
@amy75

It’s been a while since I’ve written but I’ve been to see Dr. Otley and some of his colleagues at Mayo in Rochester. It was quite the whirlwind but I was incredibly impressed with their knowledge of my disease and the options offered to me.

I am declining biologics at this time because of the scary, potential side effects.

I’ve chosen surgery! I’ll be having day surgery on the 20th of Jan. on my underarms. Wide excision with secondary intention healing. Meaning, no grafts and only very few stitches to help promote skin growth I will have large underarm scars and the healing time will be extensive. Once healed, I will have two more surgeries. I am hoping to be done with surgeries by 2018!

Why this is worth it to me. I am absolutely exhausted all of the time. I have swelling in my arms and hands because my lymph nodes are blocked and this will only get worse as my disease progresses. I want to really live again and I think this will be the beginning of that journey back to some health.

I’ve had so many medical problems in my life and I feel like my 20’s and 30’s were dominated by doctors and medicines, surgeries and a lot of fear and stress. I’m hoping this will give me some time to experience life as a healthy person, if only for a while!

I’m very excited and hopeful. It’s been a long while since I’ve felt this way.

Hope all is well with everyone that has posted here.

Jump to this post

Hoping that you get the results you desire from the surgery and that Dr. Otley is able to give you relief. I think all of us that have HS, all we really want is relief and just not as many sores, or none at all. I’ll be watching your progress throughout your surgeries to see how it works for you and wish you the best!!! 🙂

REPLY

Hi @amy75, @autumnleaves,

I just wanted to follow up and sincerely hope both of you are doing well? @amy75, are you done with all the surgical procedures?
I’d also like to introduce you to Connect member @arieon69, who very recently shared her experience with hidradenitis suppurativa in this discussion:
https://connect.mayoclinic.org/discussion/anal-fistula-procedures/

I’m sure you will find much strength in your shared experiences.

REPLY

Hi, there. I’m sorry you have to deal with this. I am an NP and have seen lots of women with this problem. I understand that most of these women respond well to antibiotic treatment, although the cysts seem to reocurre. Sometimes surgical removal gives some relief. Other than that bit of info I don’t know any more. Good luck.

REPLY

I’m so sorry your plagued with this! My daughter developed this is her late 20’s. I’m a dermatology nurse and we see it quite a lot. The answer for daughter came with the nae of a topical gel called EMUAID. It calms and soothes the skin from inflammation, pressure making you more comfortable while the boils/cysts drain. She has also been using an anti bacterial,anti fungal soaps. This medicine is homeopathic, natural ingredients. It’s also supposed to help with scarring. If you haven’t tried it, maybe you could think about seeing if it helps you. And I wish you all the best. This stuff is horrible and i know it’s painful!

REPLY

Still need guidance?

REPLY

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?

REPLY

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!

REPLY

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?

REPLY

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.

REPLY

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!

Jump to this post

@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

REPLY
Please sign in or register to post a reply.