hidradenitis suppurativa

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Hi everyone, was just wondering if anyone else has hidradenitis suppurativa. For those of you who don't know what that is here is a link.
http://rarediseases.org/rare-diseases/hidradenitis-suppurativa/

It isn't the easiest/most fun thing to talk about openly, but thought it might help others to know about it too. I have recently had a worse than normal flare up and I have had it my whole life since puberty. I can remember thinking I had a STD or cancer at one point even due to the large cysts in my groin and underarm areas. I am now seeing it on my inner thighs, neck and chest. Knowing what it is really calmed my anxiety. I also had extreme acne when I was in middle school and took accutane. Since coming off birth control, my acne has flared up as well as the HS.

I really don't like HS and I am looking forward to getting pregnant and back on birth control so that it will be more controlled again. These hormone fluctuations are hard to deal with and have many side effects.
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  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    I don't know about this exact condition, but in the last few years, in my underarms and "panty line" areas, I get what looks like huge "pimples" or "boils" etc. I asked my endo this last visit and he said that it might be blocked sweat glands or hair follicles, but they get huge and painful and may "pop" or whatever, but they get irritated by my bra and can literally be almost bad enough for me to stay home from work... But you're right, talking about the things that are hardest for us to admit makes us stronger! (hugs)
  • Deena_Bean
    Deena_Bean Posts: 906 Member
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    I don't have it, but I can certainly understand how frustrating it would be. How nice that you know BC makes it manageable, though! I hope you're able to conceive quickly so you can get back to normal, sounds extremely painful ((Hugs))
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Thanks guys, yes that is it KnitOrMiss! I've read many posts online about doctors not knowing what it is. I wish I would have known sooner but just glad to know now. 'Hipaclens' is a medical grade body wash that is supposed to help. I am picking some up and will let you know how it goes.
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Sorry correction it is called 'Hibiclens'
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    I've actually heard of that stuff, and it works great in general...but I honestly don't know how (or if) it would help in this situation... And this whole thing kind of scares me a bit. If diet won't fix this, I can't fathom having to go extreme enough to add in another medicine. Maybe I can finally kick in a gear and lose some more serious weight...
  • Deem114
    Deem114 Posts: 83 Member
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    My husband has suffered from HS for almost 40 years but was not officially diagnosed until about ten years ago. Because of being told all his life to just "deal with it" and that maybe one day he'll "outgrow" it, he never pursued any further treatment and literally just suffered through it. I couldn't handle the pain I saw him going through during his almost constant flares and finally came across HS when researching his symptoms. I called doctors all across Arizona looking for one that knew about and specifically treated HS patients and got him in.

    Depending how you want to look at it, unfortunately/fortunately he was diagnosed with the highest stage of HS so they skipped the high dose Accutane treatments that were the norm at the time (which is directly attributed to Crohn's disease, which sadly go hand-in-hand with HS due to this common drug treatment) and he had several surgeries stripping the affected apocrine glands and affected sinus tracts. That helped very short-term and he would not do that over again (the surrounding area/glands immediately began having new flares).

    Some things that help....He uses Hibiclens, Dr Bronners tea tree soap, Epsom salt and tea tree oil bath soaks at least once or twice a week. For pain relief, he refuses to take painkillers but since we live in a medical marijuana state, he does find relief using a CBD balm on active flares.

    I know that Humira has been approved for HS as of last year and he was in the clinical trial for it three years ago. Unfortunately, there was zero relief and no reduction in flares during the entire trial but maybe it helps with those at a lesser stage of the disease.

    So sorry for this huuuuge post but I came across this forum as I am new to the MFP community and have PCOS so started reading here but as soon as I saw this post I had to reply. I completely sympathize with the pain this disease can cause and if you ever need someone to talk to about it, please don't hesitate to reach out. - Diane
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    Well, while at the clinic yesterday for an extreme allergic reaction that turned into a raging topical yeast infection on about a 5-6" square area under my left breast, the doctor casually confirmed that what I had under my armpits and in my groin area is indeed this condition, and told me to look up things to help with it, like heat compresses and such. She said that it is and underlying hormonal condition that causes this to flare up for most people in their 20's or 30's, and nearly all of her patients who suffer this are female. Joy, right? And just casually tossed out confirmation, but I guess I should thank her for being so matter-of-fact about it, because it didn't allow me to get emotional about everything, but man, I just feel like if it's no one thing, it's a dozen others, and the further I get down the path of working towards better health, the more things keep popping up. I guess it's the "getting worse before it gets better" crap that comes with the body detoxifying and such? At least that's what I'm going to tell myself for now to keep a tenuous hold on what is left of my sanity. :'(
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    @weberaimee I was wondering what you do by the way of treating your flares when they get bad. The NP mentioned hot compresses and such, but I wouldn't know where to start, and I've used the generic of hibicleans off and on for my yeast rash, but one I had that was dime to penny size blew up at some point yesterday, and it's now like almost half a golf ball sized, and it's at the top bend in my armpit, and it's just hurting. I will be out in the heat tomorrow for a good chunk, and I just don't want to feel beyond miserable. It might have been the Nystatin powder that I had for my rash that I added to the area to see if it would reduce the inflammation, but man, I feel like CRAP right now... Any suggestions? I'm at work for now, but have some flexibility in what I can do at my desk...
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Hey guys! so sorry I haven't responded and thanks for sending me a message to check my post replies. I am sort of glad that others have this, not glad you have it because it sucks, but just glad there are friends to discuss with! KnitorMiss I am so sorry that sounds painful. So mine is on my very inner thigh and the last two times, I have used a heating pad compress for a few hours at a time to help it come to a head and then I have popped it. This is painful and gross and a little disturbing because it feels weird and just the shear amount of blood is gross and the squirting is un-nerving. I have started washing all affected areas with Hibiclens every time I shower now. I then apply a vitamin E and tea tree oil lotion to the affected and adjacent areas. This tended to stave off any infection or flare ups all month, but then when my progesterone and period hit, the boil filled back up again and became painful. So this time I did pop it and it really hurt and made a large opening that took many days to heal. So I then sprayed bactine and hydrogen peroxide on and put a large sterile bandage and wrapped my leg with 'no hurt' tape to hold in place. I then continued with bandage, tea tree and vitamin E and hydrogen peroxide for a few days until it healed and closed up. I can still feel it in there and I know it will come back next month. So next month I have a new plan which I hope will help aleviate the pain of popping it. It has to pop to heal and feel better, and the first time it popped when I wasn't expecting and I can't have that happen during a meeting or something. So I'd rather control it. So I went to the pharmacy and purchased a few sterile syringes. I plan to purchase a few sterile alcohol wipes and sterile plastic gloves and then use the syringe to try and pull the liquid out instead of having to pop it. If it doesn't work to syphen the liquid out, I will just use the syringe to lance it so it can drain. ps- after you lance or pop it, you will need to bandage as it will continue to drain for a few hours, which is good. I have also purchased one other Product for next month flare up called 'boil ease'. I am allergic to parabens so I have to be very careful what products I use and I heard this helps it come to a head. I hope my skin tolerates it as I have sensitive skin. So next month I plan to apply this before I use the syringe to see what happens and if it helps. For now it is in 'remission' until next month. I can feel it there, but it doesn't hurt. So I use hibiclens evertime I shower and Tea tree and vitamin E lotion a couple times a day. The tea tree lotion feels so nice and smells really good. It is also good for scars and acne so I am using it on my stretch marks and any cuts I have too. The brand is DermaE. I have smaller flareups on mystomach and hips and thighs, but not too bad and I just treat those with the tea tree and vitamin E also. If they are large enough, I do usually pop them. The thing is that doctors all say don't pop them, but they are so painful and gross when they do pop that you have to control it. I think if I am very careful and clean and don't stab myself deep in the leg or anything, it should be fine. All the doctors say you should get them to lance it and scrape everything out. But I keep hearing it is very painful for that procedure and then they just come back anyway. So I think the answer is how to maintain.
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Deem114- I'm so glad you did post! It is super helpful to hear your husband's story and know that there are others out there. I have been using tea tree oil and it really helps. I do have one question for you. Did your husband ever try and lance or use a syringe to take the liquid out? Or does he drain them daily with pressure or popping them? I have watched a bunch of youtube videos and I think if I had it that bad I would have a very hard time working. It seemed like one guy had to use pressure to drain them daily. Thanks so much for being so open, that is the beauty of the internet, we can all talk openly without being ashamed. KnitOrMiss, the main thing to consider is that there really isn't a cause or cure for the problem. From what I have researched it is hormone related and doesn't have to do with diet or weight. I think obesity does help it flare up more or can lead to hormonal imbalance which then causes it. But I have had this my whole life even when I weighed 160lbs and was an awarded highschool athlete. I was all muscle and still had it. I didn't know what it was at the time and I always kept it a secret because I figured it was acne or worried it was an std. I also had horrible acne and had to take accutane. I have had pretty perfect skin my whole life after accutane until I got off birth control again and let my crazy PCOS hormones out of the cage. Good news is I am only a couple months away from getting pregnant. And I have hope it will get better when I go back on birth control. The reason we are waiting now is to save money for a few months and we have a trip to Cancun planned in July. CDC says we should wait 8 weeks after visiting an area with risk for potential zika virus. We are only going to tourist places so should be fine. But we want to be safe.
  • Deem114
    Deem114 Posts: 83 Member
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    My husband pretty much has multiple active boils at any given time. He does "work" them until the point that they open and drain but if one gets very large and painful he does reach for the boil-eze. That usually works within hours for it to come to a head and open up. He's had this for so long and at such a severity though that his skin in these areas is just so fragile that if they don't open immediately, they just actually stay open.

    He is VERY hyper - aware of his hygiene and is constantly making sure any active areas are always clean and/or covered. I think he goes through more pocketbacs (antibac bottles with fun goofy scents I buy from bath & body works ) than I do :)

    He's no longer working and actually receives disability after 30+ years working at IBM after applying for it a few years ago with the main diagnosis of HS. Working during the last few years was pretty bad though especially when the flares caused such bad infections that he constantly had flu like symptoms with fevers. :/
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Gosh, that sounds so painful, and I've heard of the areas staying open and that just seems so hard. Thank you for sharing and I hope he feels better in the future. It is good to hear he was able to go on disability, I can imagine that must have been so hard. Thanks so much again it is nice to have others to discuss with.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    Yeah, so once I stopped messed with the underarm one (there's one large one, and several more pimple sized/shaped ones), it has stopped with the redness/purpleness, and is remaining painfully open, but the swelling is receeding. Due to deodorant and such, I have to carefully use a cotton swap to get the residue out of the divet, which is painful as all get out.

    I have always gotten pimples/boils in the ... well, butt crack area, since I have ZERO idea what the medical term is for that. As long as I can remember anyway (at least the last 7-10 years). They come and go, usually after being popped if they come to a head, or just ignored if they don't. I have two to three spots in the left armpit that look like they may have channeled, and the ones on my groin/female areas continue to surface/recede at random. This stuff all flared up like mad when Keto (getting back into it after a BAD session off plan) played chaos with my hormones (spotting and all kinds of mess). I'm hoping that once the insulin and hormones are controlled well again (very heavily on the way to that achievement), that these will settle out.

    The doc agreed that it is hormonally driven, but there's no clear cause, and definitely no cure. I got some of the generic of HibiCleanse to deal with a rash that developed in my left underbreast area, due largely to an adhesive allergy that causes me to break out 100X worse than the initial scrape, but only on like 50% of my body. It's ridiculous and frustrating.

    And my skin is crazy sensitive - even some things seemingly at random, too! - and I wonder if that has anything to do with this? I have some that drain with obvious pus-like fluid, and some that drain clear (plasma?) or tinged with blood (plasma with a small bit of blood?)... I have found though, that ignoring them after relieving any initial tension/pain seems to work best so far.

    And I did survive being outside without anything other than a couple minor dots of yeast resurgence. I think that despite using washclothes as barriers with my bras that I need to deep clean them all again...

    And not being able to use ANY adhesive now will the be absolute worst, especially considering that that stretching self stick but not stick to you stuff they use after drawing blood, it won't hold in the fattier areas. I'm so scared to start working out again, due to rubbing/chaffing in all the undergarment related areas!!!
  • Deem114
    Deem114 Posts: 83 Member
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    Yes, the disability was a tough decision to make. Not just because of the drastic lowering of income, but the psychological stress of simply having this disease. Having to put it all in writing, photo and video journaling, all the medical/surgery records, having to admit that at times he could not do simple daily functions due to a mixture of the pain, embarrassment, leaking, odor, you know what I mean as I type this. Couple that with the fact that when someone does ask why he's on disability, this disease is just something that is too personal for him to speak plainly about to strangers. As he's in his late 50's, I don't see why it's anyone concern to know that he is in on disability or why so if someone were to ask, I simply say he took an early retirement. It's sort of the truth :/

    I wish there was more knowledge about HS by doctors. What works for some, doesn't work for others. Some believe it's hormonally driven, which for women it may be, others believe it's stress related, which it definitely could be. Others believe it's food/diet related. There are many similarities of HS to rheumatoid arthritis, including the medications thrown at both diseases. This leads some people to believe that the same RA food triggers may also trigger their HS symptoms, so that is something to consider if you're still in the exploring phase.

    I know there are HS support forums and even HS support Facebook pages out there. I've tried to get my husband to be involved but as I've said, he's honestly too ashamed to even speak about it even knowing that he's not alone in this. This is why I try and speak up for him and try and stay on top of any new information or (natural) products that may help.

    As far as working out, it is very difficult for him as well. We have a recumbent exercise bike that has a large enough seat that I can place a wide memory foam seat pillow on it along with a towel which allows him to retain mobility, which was especially needed after his surgeries in the crease of both legs near his groin (not sure what to call that). Additionally, if you have access to a pool and are comfortable using it....that provides great low impact exercise and helps "dry up" the areas due to the chlorine (at least in his case, when we had a pool).
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Gosh this stuff is no joke. Well thank you both for discussing and sharing tips. I really hope you all feel better and find relief, although I know that is hard. It is nice to have support.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    My worst one in my left arm pit has subsided for the moment. Should be interesting to see if it returns in roughly 3-4 weeks since my cycles are suppressed by continuous birth control pills and only chaotic at the moment due to readapting within keto.

    @Deem114 I don't think you mentioned it, but if your husband is overweight at all, he likely has more estrogen in his body than men are supposed to have, as estrogen is stored in excess body fat...that's why when we burn body fat that our cycles as women get all kinds of chaotic for a bit before settling back down... Just a thought. I honestly have had very minor issues until the last few/several years when I really started seriously losing weight...so it's possible that I was moderately controlled up until I dumped all the excess hormones back into my bloodstream coupled with all the crap we get in our food and water supplies...

    Sorry in advance to everyone - conversations on the drive in to work today has my mind in conspiracy theory mode! LOL
  • Twinkleeeeeeeee80
    Twinkleeeeeeeee80 Posts: 43 Member
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    Hi guys, just wanted to offer an update. I have tried a few new things this month. first, I have been consistent in washing with hibiclens and using vitamin E and tea tree oil cream everyday. This has slowed the size of the issue this month. When it did start re-occuring I used boil ease for about 3 days and this reduced the pain significantly and also helped to control the size. Finally I purchased a new product called Ichthommol 20% oitment. It is also referred to as 'drawing salve' and it has worked wonders. There are a few different brands, CVS makes one and I bought mine on amazon prime. People say it smells very bad, but it isn't too bad. It actually doesn't draw anything out, it just thins the skin and allows the issue to come to a head and drain on its own. It also has natural anti-bacterial fighting properties including preventing staff infection which has eased my mind as I have been worried about getting an infection. So I got a new type of bandage which is a combination gauze and foam self adhesive bandage. It is bandaid brand and sticks well on all sizes so to avoid any leaks. It is on my inner thigh and it stays in place there. The soft foam bandage is nice as well. It does leave a bit of sticky residue when it comes off, but the glue doesn't cause any allergic reaction and I have very sensitive skin and I am allergic to parabens. So I put the Ichthommol cream on and then put the bandage on overnight in the morning I took it off and it looked like maybe it had drained. There wasn't any blood and no pain. I think it may have slowly drained or just reduced the infection. I'm not sure, but there is much less pressure and it feels like it usually does after a week or two of healing after I try and squeeze out the infection. There is no bruising or pain. After, I just rub more vitamin E and tea tree oil on it and let it just air out all day. I have done this two days in a row and it is a miracle. Anyway, just wanted to share. I am so glad I didn't have to resort to lancing with a needle, but I did go ahead and purchase all the stuff to do that safely if I had to.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    I thought I had posted it here before, @Twinkleeeeeeeee80 but I didn't see it. Since adding a new thyroid medicine to my compliment, using the cleanser several times a week, adding a probiotic, and using diatomaceous earth as a supplement daily, I seem to be primarily in remission. I have 4 or so spots that are still irritating, but nothing compared the golf ball sized they were at their worst. And I had a surprise cycle last week, so it's been interesting. I'll keep watching, and this is a fabulous reference thread.
  • AwesomizeRoxi
    AwesomizeRoxi Posts: 25 Member
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    I have HS all over my buttocks and under my breast
    I hope other areas wont get effected as well
    I'm also a pcos patient
    So yeah.. I know how does it feel like

    My HS is mild but the zits and scars are so annoying and embarrassing. Also the effected area under my breast grows larger with time
    Talcum powder can help a bit but I'm looking for a product can reduce the outbreak and the scars..maybe i will feel better then
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    For scars in general, I personally really like BioOil. It's a brand you can get online or at Walgreens and other stores like that. It's a combination oil that has all the best scar healing oils in it. Also, look into dry brushing, which helps with blood flow and skin renewal. Vitamin C and E (with D & A, too) also help with skin renewal, as does taking D.E. daily. I do most of these things for general health, but I'm noticing that while scars stick around longer these days, most normal ones fade away some after time. As for powder, I think once the medicated powder I was given when I got a topical yeast reaction and allergic reaction to adhesive under my left breast is gone, I'll switch back to normal cornstarch. Too many reactions with talc for my comfort.