Primalgirl Opens Up: Hidradenitis Suppurativa Part I

Primalgirl Opens Up: Hidradenitis Suppurativa Part I

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Warning: This post is graphic and candid. If you are embarrassed by frank, honest discussions of human sexuality and the human body, then this post probably isn’t for you. If you want to learn more about a disease that is connected to Metabolic Syndrome, PCOS, Crohn’s Disease and Insulin Resistance but is rarely talked about, then read on.

This will be a two-part post. In Part One, I will be dealing with what Hidradenitis Suppurativa (HS) is and giving you some background into the disease and the psyche of its sufferers, as well as my story. In Part Two, I will discuss how I got my HS to go into remission. That’s right. My HS symptoms are gone. I have found out what triggers it in me and how to avoid flare-ups. The process is lengthy and requires some sacrifice, but if you suffer from HS I know you are willing to do ANYTHING to get rid of it. However, I encourage you to continue reading. Even if you don’t have this condition, I guarantee you know someone who does. Having some background into the disease can make all the difference in helping someone you love, since they probably won’t tell you how much they are suffering.

I’ve had a condition called Hidradenitis Suppurativa since right after puberty. I didn’t know what it was called for over 15 years and couldn’t find a doctor that even knew what it was until I did considerable research, found the name and told them what it was (my typical experience at the doctors, sadly enough.). I didn’t know anyone else that had it and was too embarrassed to “come out.” I felt alone and isolated. In order to find someone else with the condition, I first had to admit to them that I had it too. The disease caused me considerable pain – both physical and emotional. It damaged my self-esteem while I was growing up and limited the activities I was able to do. It has left me with scars. While the physical scars have faded and disappeared since going Primal, the emotional ones will always be there.

“The LORD will strike you with the same boils that plagued the Egyptians. He will strike you with hemorrhoids, sores, and itching that won’t go away.” ~ Deuteronomy 28:27

Having a skin condition that looks like herpes on crack in your private areas – your groin, pubic area, buttocks, under your arms or breasts or anywhere where there are hair follicles (so potentially your entire frackin’ body, really) – will definitely affect how you interact with other people. Imagine a girl just going through puberty, with all the stress and problems that puberty normally entails, and then add that frightening skin condition. Imagine going to a doctor to ask what it is and being told that it’s caused by bacteria and the ensuing shame that comes from being told “you aren’t doing a good enough job of cleaning yourself. Down there.” Imagine being told they don’t know what is wrong with you and that they don’t have a solution or treatment. Imagine that you are that girl and your friends are having a pool party. You really want to go but you are afraid that your bathing suit might ride up in the back and someone might see. You don’t go to that party, do you? You don’t change in the locker room either. You don’t go to sleepovers. You are afraid of being intimate. You think that people will think you are diseased, infected, contagious, damaged. Imagine the fragile self-esteem of a teenager who is afraid to reach out for help and who feels isolated and alone. I imagine this is how some gay teenagers must feel. It’s hard having a secret.

This was me. I am lucky that I had parents who constantly built me up in other ways, or God knows how I may have turned out. I’m also lucky I wasn’t raised in a strict religious family, or I may have thought this disease was inflicted upon me by God. After all, doesn’t God give people boils from time to time, for some sin or another? I’m also lucky I didn’t develop OCD about keeping myself clean. I didn’t even tell my supportive, loving family about my disease until I was in my 30s. It turns out they couldn’t have helped with the condition at the time anyway – the doctors couldn’t help. No one knows what causes this disease. No one in Western medicine has a clue. It wasn’t until I went Primal that I noticed an improvement in my condition and it took almost 3 years to fully understand what triggered the outbreaks and to completely avoid them. All the doctors I saw over the years didn’t understand the autoimmune response that HS seems to be. No one ever suggested perhaps it was something I was eating that was causing the outbreaks.

If you want to jump right to pictures, visit DermNet. Please be warned that the pictures are graphic and might contain the occasional penis, vagina, nipple or buttock. After all, these are the areas that are affected most often.

There’s a reason I needed to warn you before you looked at those pictures. They’re fairly horrific. The HS-USA website describes Hidradenitis Suppurativa as follows:

“Hidradenitis Suppurativa (HS), also known as ‘Acne Inversa’, is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact – armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration — hence the name) involving significant scarring.

Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These ‘flare-ups’ are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.

Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.

Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.

HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.

Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million – potentially up to 12 million – Hidradenitis Suppurativa sufferers in the United States alone!”

If you don’t have this condition, thank whatever Gods you pray to. Then take a look around. I bet you know at least five – if not more – people that have this disease. I am the only person I know that is willing to talk about it, but once I opened up to a couple of friends, they told me that they had it too! They just didn’t know what it was called, what was causing it or how to get rid of it. My doctor referred me to a dermatologist, who told me there was no cure: “This is a life-long condition that you will have to live with. There is no cure. The only treatment that has been shown to be effective in any way is a daily course of antibiotics. You will, of course, have to take them every day for the rest of your life. Until menopause, anyway. The disease usually ‘burns itself out’ at menopause.” Well, that’s great news for women – perhaps we get a small respite from an incredibly horrible lifetime of pain later on in life, but what about the men? I haven’t read or heard anything else about HS “burning itself out” later in life in any books I’ve read, or even on the forums – just the occasion post-menopausal woman who seems to have the “situation under control.” There are all kinds of crazy theories and medieval-like home remedies out there on the Interwebs for HS (I tried them all), none of which work, some of which are downright dangerous. I’ll deal with these theories in my follow-up post.

My Story:

Right after I got my period at age 13, I started getting little pimples and bumps on my buttocks. They were very embarrassing, but I could clearly tell what they were and I wasn’t sexually active at all, so I knew I didn’t have an STD. I didn’t tell anyone about it, except for my best friend at the time. She also admitted that she got pimples on her bum too, so I thought that it was something fairly normal. About 2 years later I started getting the pimples in my groin area, except that they were more like boils than pimples. The ones on my bum changed too, they were bigger and much more painful. The boils would “erupt” and pus would come out, just like a pimple, except that blood would come out too. They would take weeks to come to a head and months to go away and eventually heal. It was fairly common for another boil to pop up in the same place before the previous one had even finished healing. Of course, they scarred. Badly. If the boil didn’t erupt, it would still take months to go away and would leave a dark spot. (On me, these eventually fade away – but it takes anywhere between 3 months to a year. If you are dark-skinned or scar very easily, you may carry the marks of HS for life.) Strangely, I have never had a single problem with my underarm area. This is usually the most common place for HS to occur but I’ve never had so much as an ingrown hair there.

I went to my doctor and she told me I was suffering from adult acne. Ha! She obviously didn’t have a clue. I didn’t mention it again to another doctor until I was about 30. I went in for my annual exam every year and no doctor ever said, “OMG, what is that?!” so I figured I didn’t have a reason to panic. I had a couple other girlfriends who had complained about boils in their groin area, so I still thought it was fairly normal. They went to their doctor, were given antibiotics and the boil cleared itself up. It’s been decades and I haven’t checked in with these friends to see if they had any more boils pop up over the years. I bet they did.

Over the years, my weight gain increased, as did my depression and other symptoms – including allergies and hair loss – and the HS got worse. I usually had about 3 boils at any given time. I started doing research and found a theory that tied HS to excessive sweating and bacteria. Since I was overweight, I did sweat more than the average person. I decided to shave off my pubic hair (against all the popular advice) to see if that would help and it actually did – I stopped getting flare ups in my groin but then got them worse on my behind. I also had a horrible problem with ingrown hairs, something I had never experienced before. I tried every remedy and cream on the market and nothing helped.

I now suspect that my ingrown hairs were caused by inflammation. Once I had my insulin and inflammation under control, I no longer got ingrown hairs. A short side note: I will also get ingrown hairs/breakouts in my nose if I eat something inflammatory, they are probably the most painful thing I’ve ever experienced. They are the first sign my body gives me to tell me I’m experiencing inflammation. The next is acne, canker sores and achy joints. At the time, I was also breaking out with cystic acne on my face. The pimples were almost identical to the ones on my bum and would take over a month to resolve. The dermatologist told me that you “can’t get HS on your face.” End of story – for her. It wasn’t for me. When I got my HS under control, the ingrown hairs AND the acne also went away. In my experience doctors like to compartmentalize problems – there’s no way that anything could possibly be connected. It is this mentality that slowed my recovery by over a decade. If a single doctor had just taken a look at the bigger picture instead of trying to treat everything individually, I may have been cured years ago.

Now that you have some background into what Hidradenitis Suppurativa is and the psyche of it’s sufferers, subscribe to this blog to learn how I got my HS to go into remission. I’ll be posting Part 2 of this series later on this week. With a Primal/Paleo diet and lifestyle and a little record keeping, it is possible.

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118 Comments

  1. Hi! I am extremely excited to read your posts about HS. I too have suffered (continue to suffer) from HS since puberty. Since going primal I have noticed a severe reduction in outbreak (mine are mainly underarm, and buttock although occasionally groin) but not a total remission. In fact, I am just coming off a particularly painful bout in my underarm. I believe that diet has helped me tremendously, but that stress plays a big part and also physicality. Certain bras, any use of deodorant or powder, and, most unfortunately, shaving cause flare ups without fail. It is true, though, that diet has been key. I have bad flare ups once or twice a year now as opposed to once a month.

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    • Kori: Over the years using antiperspirant, I had rashes for yrs. a dermatologist told me to stop and see what happens..the rash was gone in several weeks. I now use white vinegar rubbed on with cotton pad which controls bacteria. I also had break outs on buttocks and under breasts. Switched to eating primal 90% and cleared up. Ditched raw tomatoes also. /food sensetivies can show up as you get older also which takes time to see which foods to avoid.

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  2. Count me among the grossed out by the condition so never told my doctor about it and never knew there was an actual name for it. I just thought I’d always been prone to really bad cases of infected ingrown hairs. Also have PCOS. Paleo is what works for me.

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  3. Thanks for writing about this. I’ve had the problem for years. I didn’t know the name of it and I’m a nurse. I just called it abscesses. One dermatologist I went to wouldn’t touch them and barely looked at them. Another dermatologist had me take a course of antibiotics and wash every third day with hibiclens for a month but they came back. I keep lancets on hand to puncture them and drain them as soon as I can, then they aren’t as painful. I had one small area that was so chronically infected that I had it removed by my OB Dr. I’m so careful with my handwashing at work because I fear I might be an MRSA carrier. I can’t wait to hear how you got rid of them permanently.

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  4. I came across your site, simply by chance. These past few nights I have barely slept a wink. My 16 year old daughter was diagnosed with this condition a few short months ago when she had one of these so called ‘boils’ removed from her armpit by a surgeon, in his office. Of course, like any mother, I researched HS following that diagnosis and saw many images online. Needless to say, I was terrified. It may have been wishful thinking on my part….but I thought we were done with this so called HS after that removal and my daughter would not have to worry about this condition affecting her as some of the stories I had read online.

    Now, she has more and they are in both armpits. And, I need to mention that the one area where the doctor removed the lump, has never fully healed.

    I have been on so many websites and in reality, it is the same information copy and pasted over and over. NOBODY has any real information about what can be done for this disease. It is breaking my heart. My daughter is a beautiful young woman and I can’t imagine sitting idly by while this condition takes more and more hold over her body. As a mother, I want to find out everything I can about this disease, hear from others that may have found ways to keep it under control and what I can do to help her.

    I need to make another appointment, this time with a dermatologist, and I dread the reality that they really won’t know what do do for her.

    Thank you for sharing your experience and I look forward to reading more.

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  5. I am so sorry that you suffered with this condition. I never knew anything about it til reading your blog post. I love how frank you are in your writing and I’m sure that you are helping many many people in your candid conversation about this skin issue. I’m also grateful that you are finding relief from this. Keep on writing, I love reading what you have to say on this and so many issues!

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  6. Very important blog entry to get out there on the webiverse. I applaud your courage. I don’t have HS, but from the pix, I may have dated someone with a mild case of what I’d just thought of as “buttcrack acne.” You’ve been such an inspiration for other reasons and have come along into my life at just the right time. I think you’re great.

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  7. Wow!! I have found a name for what I have been suffering. I started Paleo because I thought it would help with the painful lumps that I had started getting in my groin area and on my stomach. Not to mention the psoriasis that seems to be getting worse every year. Before paleo, every diet bandwagon that I jumped on was all about the extra weight, now, I just want to be healthy. Don’t get me wrong, I would love to lose the extra 80 pounds of “baby” weight that I am carrying, but really I just want to be happy and healthy. Vibrant.
    I am trying to stay paleo, but stray quite frequently. I am in the process of converting the whole family :)

    Thank you so much for your post, now I know that I am on the right track
    Heather

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  8. Hi Primal Girl:
    I never heard of the condition and I do not suffer it, but I support you. I believe strongly that shame and hiding is the worst offense. We all suffer from something or another and we have all been embarrassed about them at one point or another. Information and understanding goes a long way. So I just wanted to say that even though I do not suffer it, I am so glad you were brave enough to share it with us. Who knows maybe my daughter or granddaughter will suffer from something similar someday. I also believe in primal, I cannot believe the misinformation out there about sat fats, cholesterol, etc… Thanks for the website, keep it up!!

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  9. OMG im in tears just knowing that someone is actually going to tell me something that might help me get rid of this. I’m only 20 and I have had it for a few years. I recently quit smoking because I read that affects it alot, and it has helped A LOT. Just not completely, just like you I dont get them in my arm pits or my breats. I just want help, ill do anything, ANYTHING. Your an angel.

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  10. I have spent most of my life being sensitive to foods and at some point realizing that this was a blessing in disguise, because if I was able to eat anything I wanted I’d been even heavier. Along my journey I experienced that connection of what I eat to how my skin reacts as an indication to ‘bad’ foods. I do no have HS and now feel that my skin problems are very minor. But I offer to you the same way of releasing some more negative thoughts about your body.
    This dis-ease is a blessing in disguise, helping to show you the way to optimal living. Eating the right foods will help cure it and so will thinking the ‘right’ thoughts! Primal Girl has added a huge piece to healing here by bringing this out in the open for people to deal with. Can’t get much better than that!!!
    Health issues have become so compartmentalized and it’s good to remember that everything but everything is connected.

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  11. So glad to have found this. Thanku so much for giving us a voice!

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    • You’re welcome Felicia. I hope it helps you! :)

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  12. THIS. The autoimmune paleo lifestyle has all but cured me of mine; very rarely I’ll get a flat red circle (no WBC center) a couple times a year. About 10 years ago I was on a very non-paleo low carb diet and found that Splenda caused terrible HS breakouts. Next worse was tomatoes.

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    • Yup, Splenda seems to aggravate my HS as well – I was having way more flareups when I was eating Splenda, even though my potato intake was lower. I wonder if the maltodextrin in it is sourced from potatoes. No one seems to know where it comes from. I refuse to eat that crap anymore. Tomatoes also affect both me and my kids.
      I think there is a combination of factors that need to occur in order to have a flareup. If I ate some sugar-free (read: Splenda filled) candy along with some potato chips right before my period when I am stressed, then for sure I will have a flareup. Throw in some artificial color and all hell breaks loose. If I eat TWO potato chips with none of the other factors involved, I will simply get a zit on my chin. It’s still enough to tell me that some inflammatory response has been triggered, but not enough for the HS flareup. I’m still doing experiments on myself, but everyone is different.

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  13. Wow! I have suffered from this since I was 23 years old and I am now 43, so 20 years of it. I often thought it was stress related. I have the same area being affected, no underarms either. I made a connection to sugar and it’s been much better since quitting sugar completely. I only use stevia and very little. I went Paleo about 3 years ago, but quit the grains, potatoes, pasta about 2.5 years ago. It was slow going, cutting things little by little. I have had periods of 30 days without dairy so I don’t think dairy effects me. I’ve also been without nuts. I don’t seem to get reactions to either when I add them in. But I’m going to try a 30 days autoimmune protocol next and follow your suggestions. Since going Paleo and quitting sugar, I only get a flare-up very infrequently (I haven’t made the connection as to what it could be, I do sometimes have 90% dark chocolate but haven’t noticed a connection and seems to be fine) and sometimes I have drained it myself or just apply a hot compress in the shower and it will sometimes just sort of reabsorbs back into the body. Does that happen to you? It’s always been the weirdest condition and I also feel ashamed about it. I’ll tell people I’m walking funny because I have a cyst on my leg (I never say groin, so embarrassing.)

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    • I’ve found there IS a stress connection for me, but only when I combine stress + nightshades + lowered immune system. Others have seen a connection with their periods, which is a time when our immune systems can typically dump our gut flora due to hormone changes. Since you’ve already tried eliminating nuts and dairy with no effects, the AIP should be a little easier on you, since you’ve already ruled out those items and can include them.
      Yes, I noticed boils “reabsorbing” at times, or just not coming to a head at all, but only since I went Primal. I think that when I only get a small dose of potatoes, I will have the autoimmune response, but it is continued intake of potatoes or tobacco that will cause the boil to get bigger and take forever to go away. If I am only “dosed” once, it goes away much quicker.
      In order to make the connection, you are going to have to keep a food journal and keep track of ingredients in things like chocolate that you are eating. Some has soy in it, some doesn’t. Any time you eat out, you are getting soy for SURE, dextrose can be wheat derived, you never know what you’re getting unless you make it yourself. It might even be the combination of small amounts of something combined with something else. Let me know if you need further help, I might be able to see a connection you can’t. :)

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  14. I just recently have gone 30 days without eggs. And then, this past weekend I had an omelet on Sat. and one on Sunday. I haven’t noticed anything this week. I plan on starting the AI protocol next week…do I need to drop the eggs again? Eggs are fairly new to my diet since going Paleo in the last several years. Before that, my whole life really, I never ate eggs because I thought I didn’t like them. When I quit grains for breakfast, I substituted eggs and have grown to really enjoy them. I would hate to quit them. I guess my question is in order to do the AI protocol correctly, do you have to quit everything at the same time? Or can I keep the eggs since I just did 30 days without them and added them back in over the weekend and no flare-ups or side effects?
    Thank you. It helps so much to know that I am not the only one with HS. I’ve struggled with this for 20 years, not understanding what was wrong. I tried many of the things you mentioned, not wearing underwear, loose clothing (have to do this when having a flare-up), missed work a lot, lots of misery and pain. Just horrible. I have plenty of scars from being lanced, minor surgeries that have left scars, tons of antibiotics that did nothing, tried hibiclens and sulphur soap, clindamycin ointment, and wasted a lot of money on docs who told me nothing. They wanted to put me on Accutane and at the last minute, I opted not to do it. I’m happy that I never took it. I have used coconut oil, too, on flareups and it seems to help.

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    • First off, since you’ve been on so much medication over the years, get yourself on some really good probiotics. I suggest Florastor, which has really worked for me. There are tons of great alternatives out there, though, including brewing your own Kombucha. But I continue to take the Florastor and haven’t been sick in ages.
      As for the eggs, in order to know how they affect you, you will need to remove them. My husband has a problem when he combines wheat and eggs, for instance. Eggs on their own are fine, wheat on it’s own causes IBS, but wheat and eggs together cause him to be out of commission for a week.
      I know how you feel about the near miss with the Accutane – I considered it for a brief moment, too and am soooo glad I never took it.

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      • My Dermatologist put me on Accutane as a very young adult before figuring out I had PCOS and it didn’t help. I wish there was more information 20 years ago before I took it but just another reason to question medical advice. I have been aware off sugars causing this for me but I have never tried the Paleo diet. I am going to give it a try and I will post my results. My husband found this blog for me because for whatever reason I have been having more trouble the past few months after many years of having it under control for the most part. I am excited to have new information which means hope! Thanks! Beth

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        • You are most welcome. I deal with the connection between sugar and HS in my book, which is slowly coming along. I hope you get things sorted and I’m sure that Paleo will work wonders for you! Good luck!

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  15. well, I haven’t been on any medication like this for 10 years. I stopped going to the doctors to treat it around that long ago. I’ve just done my own thing at home, compresses, etc. I did take probiotics for a long time. I was using Primal Defense Garden of Life. But recently I heard that it’s not really a good product and that the probiotics don’t survive the acidity of the stomach. I’m skeptical now. But I have heard good things about Florastor. Do you need to keep refrigerated? I wonder if that’s the way to go. So, if I do the AI protocol, I’ll need to stop eating eggs again and all the other items, too, right? Bummer.

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  16. Still trying to hang on to the eggs, lol, and not have to give them up. Since going Paleo 3 years ago, I’ve eaten eggs almost every day. Except for a few weeks here and there and the recent 30 days without it. My HS is much better in the last several years. If eggs were a culprit, wouldn’t it be worse since I eat them so much?
    I thought for sure it was sugar, and I was wrong, because despite quitting sugar over a year ago, I still get the HS from time to time (much better than before). So, there is something else bothering it. I’d guess nightshades, but I know I have to do the protocol to find out.

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  17. Yes, I’ve noticed a connection with HS and my period, too. And stress. And sugar. I make my own chocolate for the most part with coconut oil and organic cacao plus a few drops of stevia. When I buy it, I buy the Lindt 99% or the 90%. It has soy lecithin I think. Is that what you mean? Soy lecithin is in a lot of things and hard to avoid. Otherwise, I avoid any kind of soy products and have for a very long time. WE don’t eat out except a few times per year (special occasions). We buy all our food organic, grass fed meats, raw dairy…all from a farm. I do a lot of cooking. Kids are pretty much primal, too. They do have pizza at birthday parties and here and there with friends. But they like my version just as much. I make ice cream for them with the raw dairy and stevia and they love it. I also avoid dextrose, maltodextrin, anything with corn, GMOs. I know it can’t be perfect, though. But we’re definitely on the right track here ;). I’m so grateful to have found this blog, though, and for your help. I can’t think of what else it could be, but maybe it’s a combination like you said, wheat and eggs together cause the HS.

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  18. You are a miracle for me! Thank you, thank you, thank you, thank you….
    There will never be enough words. Reading this was like reading my life story. I began having issues with HS at 13 as well. I also have never had any issues in my under arms, but have had and do have golf ball sized and larger flare-ups in my groin as well as horrific and painful issues under my breasts. I have Celiac disease and have been gluten-free for over a decade, but the HS has gotten worse. I just self-diagnosed HS in the last few days after a long, long line of doctors without any answers. I am going to try the strict auto-immune paleo diet and have never been more excited about anything. I pray this works. This could be life-changing. Thank you, again.

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    • Please let me know how it goes!! I’m really hopeful for you. :) I would love to know what your trigger turns out to be (if you’re gluten free, then you already know it’s not wheat – try nightshades first, then beans and legumes and if you have no luck with those then try dairy, eggs, nuts, etc.) You may not have to do the strict AIP right away. Think about what you’ve INCREASED since you’ve gone gluten free. Since the HS has gotten worse, it must be something. So far, everyone I’ve talked to suspects nightshades or wheat.

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  19. I just turned 22 yesterday and I’ve been dealing with HS since about age 12. For me it started in between my breast and in the past 4 years has spread under my arms and breast and about 6 months ago to my groin and butt. This makes me so depressed since I’m always in pain! I can not wait to go paleo because I am just miserable and so self conscious. I hope I’ll be able to get this under control. I am darker skinned so my scars may not heal but at this point all I care about is not being in constant pain! (I will try cocoanut though!) Thanks so much for posting this. It has given me a lot of hope I know it can be better! I also have PCOS and my skin has never looked worse! but reading your posts have totally inspired me to get the ball rolling and get this under control.

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  20. Oh my!! I’m so happy to have stumbled upon your post on Robb Wolf’s website AND this blog. I do was diagnosed with HS about 10 years ago and it is frustrating. I discovered that it was always exacibated by anti-persperants so I switched to natural deoderizers. But I do occasionally get flare ups. I started Paleo less than 2 weeks ago for another health condition. Now I’m gonna try to limit the nightshade vegetables from my diet but it’s going to be hard because spinach is my favortie vegetable.

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    • Spinach isn’t a nightshade! So that’s good news! :)

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  21. I am approving this comment on the hopes that someone who is not willing to change their diet might have luck with your procedure, but I already see some flaws in your logic, based on what you’ve written above.
    Yes, HS is autoimmune in nature but it is not caused by gluten in EVERYONE. Only in certain individuals. For me, HS is caused by potatoes. I was gluten-free for several years before discovering potatoes caused HS for me and did not see a reduction in HS outbreaks, even though I was very strictly gluten free during that time. I have spoken to other people who have said that their HS has gotten WORSE since going gluten free.
    I applaud that you are researching this autoimmune disease and I wish you luck. However, I would caution anyone from trying medical intervention BEFORE trying a dietary intervention first.
    My HS is in complete, 100% remission and has been for some time now. I suffered without any kind of remission for over 20 years before discovering that potatoes (and nightshades in general) caused me to flare up.

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    • Isn’t goji a nightshade?

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      • Yes goji berries belong to the nightshade family. I’ve never had them so I didn’t think about including them. Thanks!

        Reply
    • I have had HS for more than 30 years I have discovered in the last year and a half Milk proteins gives me flareups. I have been totally dairy free and have a lot fewer flare ups. I have other medical problems in addition or caused by HS. Just my 2 cents Hope it helps someone. Good Luck to all

      Reply
  22. Good for you, sharing what we all go through and what is working for you now. I came across this, looking at food/HS connections, as it has become more clear to me over the years that the triggers were there, but hard to identify. This year I was diagnosed with silent reflux and now I am seeing a relationship between trigger foods in both conditions. Tomatoes, for sure…and I’m afraid, maybe that nice citrus Belgian beer I have so enjoyed lately. So much for that. *sigh*
    Anyway…I did want to share a tip. I have found that A & D diaper cream (with zinc) is very helpful when a boil first starts. I use it twice a day on those, and they will either recede or break faster and heal faster. I’m sure it’s probably the zinc in it.
    Also, not to bum anyone out, but I am 56 and the HS has not improved at all as I pass through menopause. That probably varies from person to person but mine is the same as ever.

    Reply
    • Thanks for the tip! Since it’s meant to be put on skin, diaper cream with zinc would probably work wonders. Can’t believe I never thought about it! I was of the mindset of just leave it alone and let it do it’s thing, after I tried all the messy turmeric compresses and herbal remedies I could find over the years. I wonder how zinc cream would affect scarring. Anyone try it for that purpose? I don’t see how it could possibly hurt.
      A lot of people are finding that wheat is a trigger for them, so yes, sorry, that beer is off the table. You can, however, try a nice gluten-free beer (Redbridge is a nice one) and add your OWN orange to it! It’s also nice with lemon or lime. I know the beer you’re talking about, you’re right, it IS good. But having your HS go away is even better. ;)

      Reply
      • I tried my son diaper rash meds too! It helped but it doesnt cure it. I was just desperate

        Reply
        • It does help when you have a flare up. You’re right, it doesn’t cure it but it helps with healing.

          Reply
    • I am 56 as well and mine got worse after menopause. I am so happy to find this site!

      Reply
  23. Thank you. I have psoriasis. I feel like I’ve tried everything. I also think I have HS too. A picture is worth a thousand words. I’ve had some form of HS under my arms (not always), groin area (more frequently) and buttocks (always) since I was a teenager. I’ve been primal/paleo since January. I never thought nightshades, eggs and dairy would cause the problems for me. I guess I’ll feed my garden’s bounty to the rest of my family and neighbors. I’m resolved to try this for 30 days. So in addition to sugars, grains and legumes, I need to completely avoid eggs, dairy, potatoes, tomatoes, eggplants, peppers, tomatillos, curries, paprika and chili powder. What about sweet potatoes? Anything else? Can I still drink coffee?

    Reply
    • Sweet potatoes are fine and so is coffee. Thank. God. The list you included seems pretty complete, I would start with wheat, tomatoes, and legumes and go from there.
      I’m writing a book about this as we speak and hope to have it out by the end of the month. If you have any more questions for me, PLEASE fire them off so I can make sure I include them!!

      Reply
      • Did you ever finish your book? What is it called?

        Reply
        • I’m almost done. My original plan for a 20-odd page booklet has turned into a 300 page official book with a publishing contract and the works. It will be called The Hidden Plague and will be released late spring/early summer by Primal Nutrition Inc, available on http://www.primalblueprint.com and Amazon both as an ebook and a paperback. :)

          Reply
          • Thank you :)

            I am at stage II and have been for three years, my doctor recommended hiboclens, which obv. didn’t work. I recently went in to the doctor last month asking for antibiotics, she barely looked at my inner thigh so she saw a scar but didn’t look near my groin on my panty line so she didn’t see the rest of my scars, and bumps. I shrugged it off, figuring that the antibiotics would clear it up as well as vigorous scrubbing and I was wrong!!!! My groin has more bumps than ever. I did what anyone would do in this situation: I googled it. After three years of having this issue progressively get worse I feel like I’ve been lucky enough to discover the name if it and the treatment in one day.
            I hope this works for me, I’ve got a follow up appointment in 2 weeks and I’m going to ask to discontinue the antibiotics. I’m also going to tell her what it’s called and ask for a recommendation to a dermatologist.

            I was starting to think I was just dirty! Despite showering twice daily and having to go without underwear I thought I was just not washing well enough.

      • I am at a loss as to what to eat for breakfast. No grains, eggs….help

        Reply
        • Okay, okay, I will include some meal plans in the book. I wasn’t going to because I want to teach people how to figure out what they want to eat themselves, but it’s clear that some of you need some guidance on this. :) In the meantime, why not eat leftovers from dinner for breakfast? Bacon is always an option — so is sausage, any kind of meat plus fruit and vegetables. Sometimes all I eat for breakfast is coconut oil in my coffee (put it in the blender, you’ll be amazed!)

          Reply
  24. Thank you for this information. Like your other reader who commented above, I’m also in health care and had no idea what this was. I honestly thought I had caught some sort of weird, wart-like virus from having a mammogram because of it only being under my breasts. Humid weather and sweating definitely seems to make it worse. I have also used coconut oil as well as hydrogen peroxide on my skin to help prevent flare ups. I use essential oil of lavender on the lesions when they form to help soothe and heal them. I also am into menopause and they have slowed down but not stopped. Mine got better dramatically when I was on HCG diet without carbs, although have since fallen off that wagon. Am working my way up to full paleo. Nightshades are definitely out next.

    Reply
    • Good luck! Let me know how it goes. Good call on the lavender (I used tea tree oil), peroxide (I used rubbing alcohol) and coconut oil. Standard wound care is what works best for these things. :)

      Reply
  25. TARA!!!! Thank you for this! I was just reading about you in one of Mark Sisson’s books that mentioned your HS and immediately got on my computer and googled you. Funny thing is, I’ve been to your blog many times before and just missed these posts.

    I’ve had this horrible condition since my late teens, too. I get the heartbreak, shame, and confusion of it. The clueless doctors with their Hibiclens and zinc powder.

    I have been “primal-ish” for a year or so and have noticed a reduction in my outbreaks, but still have some awful ones now and again. I’ve recently recognized that I’m sensitive to nightshades and have cut back, but am not always vigilant about peppers, paprika, etc. Your post has inspired me to cut them completely and see what happens. This is the first time I’ve heard of ANYONE who has cured their HS. I really thought that I would never experience true remission from this…you’ve given me so much hope.

    Reply
    • I’m so glad I could help.
      You got zinc powder at the doc’s? Wow, a progressive thinker. ;) I was never given that. Keep with it, completely cut nightshades and see what happens. I have some other triggers listed in the book that you may want to consider. Good luck!!! :)

      Reply
  26. Hello Primal Girl,
    I have been suffering from HS since I was 20 years old. I was a swimmer, and it broke my heart when I couldnt really wear a swim suit any longer without embarrassing scars. I am currently doing the autoimmune protocol for 30 days or more. I have been surprised by not hungry I am. I was wondering…how long did it take you, once you started eliminating your trigger food to notice a difference? It’s been a few days for me and I have a couple new ones, which is somewhat depressing.
    Thank you,
    Erin

    Reply
    • There are so many things that could be triggering your immune system. The more research I’ve done, I’ve discovered that the autoimmune diet is just the tip of the iceberg. Just hang in there, it will take a couple months at least. If you’re still breaking out, it is because your gut is still “leaky.” It takes some time to heal.

      Reply
  27. What about dairy, gluten, and soy free chocolate? I’ve found the live life mega chips can be a sweet treat.

    Reply
    • I eat chocolate all the time. The sugar can cause issues but if you have it in small doses and as a treat rather than an everyday thing, it shouldn’t be an issue. I would definitely try cutting that out only as a LAST RESORT. :)

      Reply
  28. Hi Tara,

    I’m a 21 year old female in Canada and have been suffering from what I now believe to be HS from even before I hit puberty – well, almost as long as I can remember. I’ve always desperately hid my cratered buttocks from friends, family, physicians, the world… it’s embarrassing.

    Fearing intimacy, I made up for my lack of sexual experience in experimentation with alcohol, recreational drugs and smoking through most of my teens. After meeting the right guy I abandoned my party lifestyle, also started taking oral contraceptives and that cleared up the symptoms to the point that I felt comfortable enough to be sober and intimate for the first time. My boyfriend commented on the “bumps on my bum” about a year into our relationship which opened a floodgate of self-loathing, depression and humiliation. I burst into uncontrollable tears and he must have clued in that this has been an extremely sensitive issue my entire life and has since not really brought it up. I’ve asked my family doctor a few times for her opinion on individual occurrences, but never thought to tie the “cysts” in my underarms to the plethora of “ingrown hairs” in my pubic area to the recurring boils of “acne” on my buttocks.

    This condition has caused me a lot of emotional pain and anxiety and I cannot even imagine the emotional horrors and physical pain of stage 3 HS. In the last few years I’ve drifted between remission and what I believe to be stage 1 HS, but before taking oral contraceptives and while I was smoking/partying (and even before that through puberty) I suffered through constant outbreaks of disgusting boils/abscesses mostly on my buttocks all which left scars.

    I’ve recently become a great deal more health conscious and have been entertaining the idea of going paleo in attempts to eat clean so that I can achieve my weight loss goal. I’m not overweight, I go to the gym semi-regularly at the least and haven’t yet been able to cut out certain foods which has resulted in a fat-loss plateau. After reading your story and everyone else who has shared I’m definitely going to try paleo and cutting out nightshades. I’ll also ask my doctor if and what she knows about HS now that I actually know that there’s a name for it and that I’m not the only one.

    Also, does anyone have any knowledge or experience of blue light therapy for treating current HS outbreaks and/or scars? I have a gift certificate for it, have nearly flawless complexion on my face and am still working up the courage to disclose my actual problem area. It’s something I want to do if it can help but I’ve heard mixed reviews about it’s effectiveness in treating actual acne.

    Anyways, thank you so much for sharing your story. I look forward to the release of your book and will definitely be reading it.

    Yours, Robin

    Reply
    • Oh honey, you have no idea how much I identify with you. Your story is very similar to mine. Let me know how the diet changes go and if you need any support. I don’t know anything about the blue light, but if it is used to treat acne, it may help with some of the scarring. It won’t prevent new lesions, though, only scarring the area to remove hair follicles or healing your gut will do that.
      I’ve found that sun beds help with acne and HS, too – not preventing it, but Vitamin D seems to help. Since you have a gift certificate, it’s worth a shot to help with current scars. I’ll do a little research on the light therapy and include it in the book. xoxo

      Reply
  29. Thank you thank you thank uo thank you thank you. That is all :-)

    Reply
  30. i have been suffering from this horrible disease for the past 5 years. it started out as just a small bump under my arms but over the years it has become quite severe. i am at my wits end, i have tried almost everything and have yet to see results. this disease has truly changed me as a person. once outgoing and happy, now a sad hermit. i went to see a dermatologist when the break outs were minimal and it was suggested that i try accutane. why in the hell did i do that. instead of getting better i went from having one small bump under my arm pit to multiple painful bumps in areas i hadn’t had them before. when i told the dermatologist about all the new bumps that had popped up, i was simply told that it would get worse before it would get better. well not only did it get worse it became downright unbearable. i found myself crying all of the time ,not only because they hurt so bad but because i was ashamed of the way they were scarring up my body. i refuse to let this disease dictate how i live my life but i don’t know where else to turn. if the doctors cant help me , who can? this disease had affected me so much emotionally i thought i would need some kind of medication just to be able to cope. well, i am a strong person and not a pill taker so that is just out of the question. i am glad to know that i am not the only person that is suffering from this because for a long time i thought i was the only one. i look forward to reading about how everyone is dealing with this and maybe someday i will be able to share my remission story with you all. i would just like to say to everyone that although things seem pretty bad at times , hang in there because one day it will get better. i will not let HS take over my life and you shouldn’t either. i would also like to thank you Tara for sharing you story, thanks to you i can finally share mine. i would also appreciate any suggestions you have for me in dealing with this. take care

    Reply
  31. Thank you, thank you, thank you for finally giving me a viable treatment option and for giving those of us with HS a voice. I’m dismayed that it took me doing google searches to find you and even consider the primal/paleo path as an option, and that my docs are so underinformed about HS that none of them even knew what it was. Well, until a new derm gave me the official diagnosis earlier this year, that is. I’ve had this since I was in elementary school, and NOTHING has ever helped it, except extreme weight loss, but it was present even then. After a week of doing a (mostly) Paleo diet, I saw a marked improvement in my HS, with no new sores, for the first time ever! Of course, then I had a couple of bad/lazy/pms/working2job days and I cheated (a lot)…and within 24 hours of each time had a new sore. I’ve learned my lesson! It’s looking like white potatoes and maybe wheat are my culprits (some corn starch and corn syrup snuck in earlier in the week and I was fine, and I haven’t had rice.or other grains). Haven’t been able to give up eggs or tomatoes, but saw improvement even while eating those almost daily, so I’m optimistic that I can keep them. Anyway, I just really wanted to thank you. I’d tossed around the Paleo idea for weight loss…now I have an even better reason, and better motivation. although the 8 or so pounds I’ve taken off since starting aren’t bad either! You rock, Primal Girl!

    Reply
  32. Hi Greace
    if you are still out there and reading these posts, please get in touch with me. I, too, am a mother of a beautiful young girl who is going through this nightmare. I would love to talk with you.
    Thanks
    Laura
    lfinks@yahoo.com

    Reply
  33. Hace 1 semana tengo dos erupciones sobre mis pechos, son iguales a los que describes, rojizos, con pus y no se quieren sanar. parecen secos pero cada vez que tomo una ducha parecen sangrar.

    La verdad no tengo idea que es, es la primera vez que tengo algo así sobre mis senos, pero creía que solo era acné ya que toda mi vida desde los 13 años he tenido acné pero solo y exclusivamente sobre mi cara, entonces supuse que era solo acné. pero tardan tanto en sanar y aveces tengo pequeñas picadas de dolor que he comenzado a creer que es otra cosa y es así como he encontrado tu historia y la verdad estoy casi segura que es HS.

    Lo irónico aquí es que solo hasta ahora a mis 23 cuando el acné que me ha atormentado toda mi vida sobre mi cara a comenzado a desaparecer por su propia cuenta, vengo y me entero de que otro tipo de acné quiere salir sobre mi cuerpo, pero soy afortunada en tener tu testimonio y como te había dicho hace 1 semana que comenzó con dos erupciones entonces me voy a poner en la tarea de la dieta, me podrías dar un poco de orientación de que debo y no debo hacer.

    Dime si vale la pena tomar antibióticos o solo me concentro en la dieta?

    Reply
    • Hi, I’m so sorry I don’t understand this. Can someone please translate or could you please write me again in English? THanks!

      Reply
      • I have had hs my whole life. I too have considered suicide many times. I always was ashamed and felt alone. Im married to a wonderful man who never made me feel less than perfect. Might i add hes super hot! I have two children who i pray do not fall victim s to this horrible disease. I have had surgery 20 years ago and left 2 awful scars in my groin area. I have noe had many outbreaks in the groin area since but recently i made the worse decision ever and that was to have a tummy tuck and scar revision which i now believe due to the added pressure and edema to that area is now causing outbreaks. Ive been crying everyday since the surgery and now i have to deal with painful boils. I dont know what to do. Im so depressed

        Reply
        • A few notes of inspiration:
          - Experiment with foods. I now know that ANY chocolate will cause almost an instant boil for me. I simply can’t have it.
          - A & D baby rash ointment with zinc applied twice daily definitely clears them up much faster.
          - I have three kids, the youngest 21, and none of them have HS, so take heart. It may very well not be passed along to your kids.

          Reply
          • Do you react to organic cocoa? Chocolate comes from seeds so it is possible that its your trigger. It’s also possible that its the soy or something else in the chocolate that is affecting you.
            Good luck in this. Chocolate doesn’t affect me, I don’t know what I’d do if I had to give it up!!! Wait, yes I do: have you tried carob?
            Also, consider coffee as a potential trigger as well. :( if you’re still flaring up, that is.

          • I don’t know about organic cocoa, but I do know any kind of chocolate seems to do it. And yes, it’s tough to totally give up.
            My coffee intake is minimal (1 cup a day), but as with chocolate, I do realize any tiny bit of something that causes a flare up can be enough to do it. I might have to go cold turkey on the coffee and see.
            I have one now which appeared after having about 4-5 little Reese’s cups. However, the PB cups were delicious:)

          • Peanut lectin passes through the gut wall all by itself, carrying stuff with it into your blood steam, so you could actually be reacting to the peanut butter. Also, Reese’s, Hershey’s and other American candy makers put all kinds of crap into their products, including TBHQ, BHA, corn syrup, emulsifiers, chemicals, etc. I find that Hershey’s and Reese’s in particular make me break out, but organic chocolate (70-85%) does not. It’s something about the sugar that used and the combination of substandard ingredients and chemicals that does it every time.
            It’s probably for the best just to cut it out completely, but personally, I would try every thing I could to find a brand of chocolate that works for me. :) I would even experiment with buying organic cocoa butter and making my own chocolates, I love it that much. Good luck!

          • Wow, the peanut butter….could be the culprit. I have had very little chocolate, but when I have recently, it has been something like a Reeses. Might have to experiment further, because I hate to give it up totally! It’s tough because I have silent reflux, too, so I am getting frustrated with anything good left to eat. They say to eat whole grains, yet they could be bad for the HS. I need a personal chef.

          • LOL, no you need my book! :) If you learn about all the different problematic foods, you’ll know how and why each one affects you. Whole grains ARE bad for HS. Whole grains are bad for EVERYTHING. Silent reflux is often caused by dairy. You may also have low stomach acid. Sit tight, the book is coming soon!!!!! :)

  34. Hi

    I really appreciate reading your post. I just learned that I have HS after being misdiagnosed for many years from my doctor. I have used many meds and had it lanced and nothing works. Potatoes is one of my favorite foods and could be the source of my problem. I will check and see. I was reading your post and replies and I see that you guys are suggesting a diet called Paleo. Is that correct?

    Thank you

    Kim

    Reply
    • Yes we start with a Paleo diet and then move in to the realm of the autoimmune Paleo diet (which means removing some things like eggs, potatoes, tomatoes (all nightshades), dairy etc. and then adding them slowly back in after a month or so.
      Instead of potatoes, try yucca root, taro root and sweet potatoes. I’m fine with all of those and they taste BETTER than potatoes! :)

      Reply
  35. Hi, like many others here, I’ve suffered from HS for 15 years and was diagnosed about 7 years ago. I tried all the antibiotics, creams, soaps etc. that we all have with little to no success. My dermatologist suggested I try birth control but was unable to due to other complications. Long story short, I ended up seeing a pharmacist who deals with bioidentical hormone therapy. He knew nothing about HS but after doing a hormone saliva test he said I had some of the worse results he had ever seen. I am now using progesterone cream daily and have had a significant decrease in number and severity of flare-ups. I still suffer and will be looking at diet changes to hopefully get rid of this for good!!

    Reply
  36. Hello,

    My name is Nicole. I am 18 years old and was just diagnosed on January 30th, 2013. I have had HS since I was about 13 and was very embarrassed to talk about it with anyone. It started out with one small boil on my groin and now my groin is covered. I then got ingrown hairs and pimple like bumps in my armpits. I now have quite a few between my breast. I use a aluminum free deodorant and have seen less pimples in my armpits but now I have the harder cyst like bumps.
    On February 9, 2013, I decided to go Gluten Free. I will continue with this lifestyle if it helps even in the slightest. If it doesn’t help, then I will try dairy free. I will also be cutting out nightshades. I started a journal that I bought at Barnes and Noble where I will be recording how I feel each day, what I eat, when I go to bed and wake up, and what my HS is like that day. I hope to see progress. My dermatologist also has me on a topical antibiotic called erythromycin which I apply two times a day. I haven’t noticed much difference except for between my breasts. I just have dark red scars there for now.

    The cover of my journal is a quote:
    “God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.” – Reinhold Niebuhr

    I hope everyone that has HS can stay positive and keep trying. I know there are some aspects I’m going to have to live with such as the emotional pain, but hopefully I can eliminate the physical pain.

    Primalgirl:
    Thank you. Thank you. Thank you for the insight on HS and how you have gone into remission. You are such an inspiration to me and I really hope one day I can be in the same position as you. When is your book going to be published and what is it called? I am very eager to read it and know as much as I can.

    Thanks again,
    Nicole

    Reply
    • Thanks for this Nicole. The book is called The Hidden Plague and it should be released in the next couple months. I got a publishing deal with Primal Blueprint, so it depends on their editing/publishing process. Good luck with the changes that you’re making and I so happy you’re writing things down. That’s something I wish I had done from the beginning.

      Reply
  37. Hello, thank you for sharing your story!

    I’ve been living with HS for the last 8 years. My lesions used to be under the armpits, in the groin, and along the backside. Once I learned how to manage the condition I found I would only break out in the groin (following shaving) and in between the breasts.

    I’ve made dietary changes such as eliminating gluten and reducing dairy intake. I juice at least 2X per week (carrot, apple, ginger, or a green juice of some kind). I eat a ton of garlic. I also eat a lot of soy products. My caffeine habit tends to flip flop back and forth from tea to coffee. Overall, my diet is clean. I do consume meat.

    Despite having a healthy diet, I’ve noticed the disease is slowly progressing. In September my primary Dr. put me on Tri-Sprintec (generic version of ortho-tricyclin, birthcontrol) since flare ups are so consistent with my menstrual cycle. WIth the pill and lifestyle adjustments definitely helped!! I was in remission from September until now. There are several circumstances that might have contributed.. stress (graduate student), accidental exposure to gluten, and pre-menses.

    By posting I’m not even sure what I’m looking for, lol. I’ve done extensive research over the last 8 years, I’m informed but my methods just aren’t working!! I want to cure this disease! I guess I’m feeling defeated and frustrated with the disease outcome. I know the prognosis and I see it progressing over the years. I’m hopeful that there will be a time when I don’t have to worry about flare ups. I never thought I would be so dependent on probiotics, vitamins/supplements, and apple cider vinegar… I also find relief through acupuncture and swimming (something about the chlorine).

    At this point, I’m open to suggestions. Should I go sugar free, should I cut out sweet potatoes, should I go on a juice cleanse? ..

    sincerely,
    AK

    Reply
  38. You you have no idea how amazing it was to find this blog! I honestly thought I was alone. I am from Canada & there really isn’t a lot of information here on it or people who have it. Most doctors I have seen have never even heard of HS.
    I have had it since the age of 13 but wasn’t diagnosed until 3 years ago at the age of 19. I am currently working with my family doctor as well as a general surgeon who at both amazing! As of now I have underwent 4 surgerys (tailbone, left groin & in between my breasts, tailbone & right armpit and right armpit again!) I am currently on a waiting list for a VAC dressing for my right armpit. Has anyone ever used this dressing?! I’ve done some research and have found a few cases where it was used on people with HS.

    But again thank you so much for sharing your story. It really has helped me cope and has given me hope! :)

    Reply
    • Kiley MacLeod at notdying.wordpress.com has had the VAC dressing, she’s a great resource.

      Reply
  39. I think its terrible almost everyone on h.s.websites. Want money for fake cures to get peoples hopes up is horrible shame on u people. My name is lisa i have hs for 15 yrs., i thought maybe i could chat with others about all the messed up things we have to go through so years later on the webagai n i read this story totally idenified and then u have to register oh no i bet primal girl wants money freakin BINGO. Yea right all her friends had it too BULLSHIT

    Reply
    • My first reaction was to delete this as spam. And then I thought, what the hell? There is no registration on my site, there are no costs and I have no idea what this person is talking about.
      I occasionally get hate mail from people who have hardened themselves against being able to put their HS into remission. I’m sorry this person didn’t find any useful information on my site, considering it is the ONLY useful (free) information about HS on the internet. There are a lot of angry, bitter people with HS. We can all understand that mindset, being fobbed off by doctors as we’ve been over the years. I made the mistake of subjecting myself to haters on dailystrength.org (which started the hate mail) and will never again take anything personally that someone like this has to say.
      Of course, I’m charging for my book, but that’s my publisher’s prerogative. It did take me almost a year to write, is 377+ pages and is totally useful. If someone wants information like that for free, I suggest they buy some emu oil instead. O_o

      Reply
      • I think you’re legit. And I am going to give this a chance. Unfortunately I’ve visited many websites that are run by charlatans who prey on vulnerable people who are desperate to find a cure or relief from their ailments. They claim to have a cure, but in order to access the diet for this cure you have to pay $$.
        Very thankful that your information, support and advice is free. Books are different, they are expected to come with a price for reasons already mentioned.

        Reply
    • Register for what, where? Where is she charging you for the free dietary advice she just gave you?

      Reply
    • Lisa,
      Tara has offered more free advice on this subject than I have found in any other site. If you are referring to her consultation fees, well in her defense, if she were to offer one on one advice for free she would need to come up with a way to multiply herself a million times over to speak to everyone. In one post she recommends waiting for her book as she promises to cover all aspects of HS to a person who was interested in a consultation, so she is not trying to take advantage of anyone. Also, I don’t see anything wrong with her selling her book as she spent a long time writing it and I’m sure hours of research to complete it. I for one am looking forward to this book and will buy it as soon as it comes out.

      Thank you! We’re still not sure what that comment was referring to. Some people with HS have been really and truly burnt by schemes and charlatans out there, and they’re afraid to try anything new. Some have hardened themselves to thinking that they can never get better. It’s a coping technique to try and deal with the pain.
      The book has taken over a year to write, months of research, editing, correspondence and interviews, not to mention the thousands of dollars in layout, design, etc. at the publishers and the many tears I’ve shed. I don’t feel ashamed charging for it, because it’s actually going to help people. It’s not emu oil in a fancy bottle with a slick campaign. ;)

      Reply
  40. You mentioned once you had your insulin you were able to control the inflammation. Was this an antibiotic? I am 30 years old and the last time and only time I had my inflammation under control was when I was prescribed steroids 11 plus years ago. For a brief second I thought I was cured. After 5 days I cried for more despised the horrific side effects.

    Reply
    • Hi Anita,
      I think I said “once I had my insulin under control,” meaning that I was eating a diet low in insulin-producing foods and regained my insulin sensitivity. It’s not a medication, insulin is a hormone that your body produces in response to glucose intake. If you were able to get your inflammation under control by taking steroids, that tells me that your hormones are messed up due to insulin resistance. A primal or paleo diet would probably be a great place to start. :)

      Reply
  41. I read your blog a few months ago. I never thought about nightshades as an issue. I’ve stopped eating all nightshades, and have been breakout free for a while now. I never thought that could happen. I just wanted to say thank you.

    Reply
  42. I have had this condition since I was like 10 or 11 and went to so many doctors and dermatologists trying to figure out what it was. It made me feel so dirty, derms would look at me with disgust. I have marks on my groin and under arms, always.

    Finally after visiting my last derm, she kind of figured out medications (mostly low dose antibiotics and topical antibiotics that I took for months), but never told me the name of what I had. She basically told me it was acne caused by being fat and from possible PCOS that I have but was never diagnosed with. She told me some story about how another girl came to her clinic and had this acne on her face and all she did was start exercising and lost weight and it went away. I felt like crying, every time I exercise I get a painful boil, the sweat makes it so much worse. And then I read about HS and even in your post you say that you can’t get it on your face. I don’t think you can, because it is related to sweat glands. Anyway, all her medications and prescriptions became prohibitively expensive and messy and so I quit them all.

    I went on a keto diet a few months ago and my skin got absolutely terrible (and I didn’t lose any weight, ended up gaining 10 lbs when I stopped the diet too). My guess is all the diary that I was eating cause flare ups. Diary has hormones and casein, and I know that for me, my HS flares up with my period so I am positive that it is hormonal in me. I am attempting to cut diary out now and gradually phase into a Paleo diet.

    Anyway, I wanted to comment about zinc. I am reading that zinc gluconate (along with a paleo diet) can help HS go into remission. Have you heard about this or do you take this supplement?

    Before I ever read this supplement, a few months ago I switched from normal antiperspirants to all natural deodorants, and that Crystal deodorant stuff. It helped my underarms so much, but I still got flareups. So I started using the crystal deodorant on my thighs and it helps there too. Literally this morning I went to check out the label for my crystal deodorant and one of the ingredients in zinc, and now I read this comment. I don’t think this is coincidence. So I’m just trying to piece this all together. Thank you and to the commenter that mentioned, I am going to look at zinc diaper creams and possibly this supplement. I am also going to try tumeric capsules and maybe eliminate night shades if things do not improve.

    Reply
    • ” I am going to look at zinc diaper creams and possibly this supplement. I am also going to try tumeric capsules and maybe eliminate night shades if things do not improve.”

      Glad you found Tara’s site. She has been inspiring for a lot of us. I also hope you find the zinc diaper rash ointment somewhat helpful, as I have.

      Right now, I am experimenting with using a small bit of alpha hydroxy lotion on my worst area (groin). I am applying it each night as a preventative, so if it helps, I will certainly let people know. I am also trying to stay away from the nightshades, although I slip up every now and then! (Pizza withdrawal symptoms, you know.)

      Hang in there.

      Reply
  43. I was delighted to stumble upon this site. I have suffered with boils and sores (mostly on my buttocks and armpits) for years. Two showers a day and thousands in acne meds have never helped! This started after puberty around age 12. I also had a horrible breakout on my arms and legs in my late thirties that lasted for two years. I believe that was Dermatitis Herpetiformis. My bodily sores were identical to the ones on my buttocks. Only one doctor knew my skin troubles were coming from my stomach. He was convinced that I have Crohn’s–he may be right. I do have Hashimoto’s and IB as well. One in four people with Hashi’s have Dermatitis Herpetiformis. Many people may have a combination HS and DH–as they are both caused by inflamation. Removing gluten and sugar help tremendously.

    Best wishes

    Reply
  44. I’ve also lived with this for years…it started when I was around 12 and though it has gone away, sometimes for years at a time, continues to be a part of my life.

    My most recent horror story was about two years ago. I was on a date, and I’d had a particularly huge, painful one on my buttcheek, right where the leg and bum meet. As everyone knows, it was horrifically painful, but especially so since I also had to sit on it. It had broken open, unbeknownst to me, while I was on the date at the restaurant. The guy drove me home, and when I got out of the car, there was a spot of blood on the car seat. It looked like I had my period, which almost would have been better…I hoped he didn’t notice (it wasn’t a huge amount of blood on the seat, but upon inspection when I got into my apartment, it had soaked my underwear and jeans, but luckily my jeans were dark and it was dark outside). I literally told him I didn’t want to see him after that, mostly because he just wasn’t the right one, but also because I was so ridiculously embarrassed.

    Thank you so much for sharing this with us. We understand more than you know. xo

    Reply
  45. I just want to say THANK YOU! It’s nice to know I’m not going crazy. I too thought it could have been a sexually transmitted disease at one point but thought right after that if it was that the dr would have said or did any kind of test. It’s kind of comforting to know I’m not alone with this. I found that once going primal, they started to go away. I still have some scars and have been applying coconut oil to them and they have started lightening up. Also, when I eat wheat, they come right back.

    Reply
  46. Editor’s Note: This is a great comment. It’s long, so I’m addressing specific points as I reach them. My comments are in bold italics.

    Hi,

    I was initially diagnosed with HS when I was 19, right when I began college. I have had it for 5 years now and I read about research on medical treatments for the disease on and off (documents on the efficacy of treating HS with concurrent rifampicin and clindamycin, Dr. Alexa Kimball’s findings on the efficacy of adalimumab as a treatment for refractory HS, etc.), but, up until recently, I never read much into the literature on how diet affects HS.
    There is no literature on how diet affects HS. Only on how HS is affected by drugs.

    Your story is really interesting, and I’m thinking of taking up a lifestyle of eating non-inflammatory foods in hopes of bringing HS into remission (and in hopes of losing weight). I think your method of cutting out certain foods and reintroducing them into the diet one-by-one is a great way to identify one’s trigger. I’m also impressed (and a little bit astonished) by your observation that tobacco is a nightshade! It seems to provide some possible explanation for why HS is triggered in obese people and in smokers: presumably the former group partakes in a highly inflammatory diet and the latter group smokes an inflammation-generating substance***. (Of course, this explanation is still guesswork, and my interpretation of this could very well be wrong. In particular, I realize that friction could be an exacerbator of HS in people who are obese, so I imagine diet is not the sole factor at stake here (though perhaps it’s a/the central factor).)
    There are so many factors at play, which I was unaware of when I wrote these posts. However, I address them all in my upcoming book, The Hidden Plague: a field guide for overcoming and surviving Hidradenitis suppurativa. It will be available sometime this fall through Primal Blueprint Publishing.

    I must ask. It’s been over a year and half now–have you had any recent HS flare-ups even while you were avoiding potatoes and other inflammatory foods? In other words, have you been able to maintain remission?
    This is a completely legitimate question. Unfortunately, many people who claim to be “cured” often relapse and never come back online to tell people about it. I am still in remission. However, it is something I have to manage. If I go out and drink alcohol and eat something with nightshades in it, I will have a flare-up. I’ve also been able to make myself flare-up during specific rounds of experiments. I’ve since discovered that yeast is also a trigger for me. My flare-ups are very different now then they used to be, though. They are small, not even painful, and subside without coming to a head with 24-48 hours without scarring. This is due to many other changes I’ve made, which I detail in the book.

    Thank you for being so thoroughly informative of your experience. It’s a real help.

    (***A rambling side note: if we say that eaten nightshades (e.g., bell peppers, my favorite :-(…) as well as smoked nightshades (e.g., tobacco) are both triggers of HS, then I imagine we’re implying that the chemical component of nightshades that triggers HS is one that can enter the body through eating *or* through inhaling. This might seem trivially true, but it’s actually surprising and interesting to me. Anyway, perhaps researchers can compare the chemical composition of tobacco (e.g., the plant itself, or just airborne tobacco smoke, which might reduce the number of chemicals one needs to consider) to that of edible nightshades such as peppers so as to isolate which components are the inflammatory ones. Again, this is just thinking out loud–pure conjecture.)
    I love your line of thinking. It’s the alkaloids in the nightshades that permeate the gut wall and cause the flares. However, not everyone with HS reacts to nightshades. Primarily, HS is caused by leaky gut syndrome. Unfortunately, I doubt you’ll be finding researchers looking into this, as there is no money to be made in putting people into remission by changing their diets. Now, if they can create a drug that either prevents leaky gut, or blocks autoimmune responses, then you’ll see testing into it. For now (and probably for the rest of our lives) we will need to take our health and power back into our own hands, do experiments on ourselves and find what works best for us. We can’t rely on the scientific community to do it for us.

    Thank you so much for you insightful comments. I love that this is making people think a little deeper into the real cause of HS.

    Reply
    • Also, I’ll be looking for your book! :o)

      Reply
  47. Thank you so much for this blog, i have been suffering 15 years with my condition. And i don’t know anyone else that has this. My GYN knew what it was so i was diagnosed at 15 im now 30. I wish sometimes i could have new skin, like where all my scars are. I was sent to a dermatologist and all they did was give me soap and antibiotics it just never worked the outbreaks kept coming back. I just googled food to aviod with HS and found this blog. YOU ROCK and thanks for sharing your experience. It feels great to know im not alone and others know my daily struggles. Thank you for this advice i am going to try the diet and avoiding nightshades, beside nicotine, berries and potatoes what else is considered night shade?

    So glad you’ve found a community! I’ve listed all the potential triggers in my book The Hidden Plague: a field guide for overcoming and surviving Hidradenitis suppurativa. Berries aren’t a nightshade, but tobacco, potatoes, tomatoes, hot peppers, bell peppers, goji berries, and tomatillos are. Watch out for them. Just as important is removing grains, esp. wheat. Also legumes, and possibly dairy. The book is 315 pages so I really do go into detail!! :)

    Reply
  48. Hey primal girl,
    Hi I am a 21yr old girl who has been suffering with this for probably more then 10 yrs. I’ve been to so many derms doctors some of them actually knew the name but it’s all the same anti bacterial creams and pills. This is the first I’ve heard of someone finding somewhat of a cure. I don’t really understand this method I mean I understand but I don’t know how to start or go about this I am desperate and I’m tired of being embarrassed and not being able to be in a relationship because of it can you please email me with steps of things I need to do to start this diet and what I need to cut out and what I need to do exactly please I would appreciate it and will be buying your books if and when it has come out. My email is [removed by editor].
    -Natalie

    Hi Natalie, I removed your email address as I didn’t want the spambots to pick it up. I’m going to be launching HS forums on this site within a month or two, so it’ll be a great place to get in touch with people. Check back or subscribe! You can preorder the book here: The Hidden Plague Unfortunately, there are over 300 pages of information, so I can’t easily email it to you.

    Reply
  49. Hi Primal Girl
    Sorry for the disjointed story, i am no writer.
    I do have, the tracks, scars, bumps, leakage all in the pubic area, i believe it is classed as stage 3. I get occasional ones under the breasts and armpits but not super bad. If it is really bad sometimes I get one on my cheek. I say a mozzie bit me, ha ha. I have been leaking from some wounds (or whatever you want to call them) for about 3 years a little after i was diagnosed type 2, i do not go without wearing protection because it will show through my clothes if i don’t, just recently it has gone to my inner leg so i now have to wear bike shorts to hold protection in place. As i am writing this it is getting a little sad for me, i have only recently told my mum and sisters because i found your site and thought i had an answer and who talks about this shit anyway! talking won’t cure it, that was about 8 months ago. I got my first one around 17, I am now 45. Like everyone else no help from doctors, full of advice but not really understanding, had the antibiotics, helped a little but not the really bad ones, and of course they come back when stopped taking them. I am not one to take a lot of drugs but did in this instance because, you know, after so many years you try anything.(not surgery though, I have lived with it this long I wasn’t getting cut up) Wasn’t diagnosed until i saw your site and unfortunately when i confronted my doctor he more or less threw his hands up and said yeah it sounds like it is HS, which is sad because i had a lot of respect for him until then. I have been overweight most of my life but not obese. I was a terrible child with eating, I only ate potatoes, peas and maybe some carrot, apples and oranges, the rest was filled in with bread and pasta and meat, not the good stuff either (no wonder i was fat eh). As a child though I never got a bump, I remember my first one, it was the last year of high school, of course, and by this stage i had started eating a little more variety, but cant remember back that far what it was. Of course with all these bad things i was doing to myself (smoking as well) I got type 2, at the age of 41, lucky to last that long. So i took it upon myself to do something. I joined boot camp and tried changing my diet, this helped with the weight and type 2 but the bumps came along for the ride. I saw something on embarrassing bodies and thought ‘that is what i have’ so googled it and thank goodness i came across your site because it wasn’t looking to good. I read your story and thought, yep that’s it, and believed nightshades have to be my problem, trying to look back over my years as to what I ate and when. (btw before i read your site i thought white potato was bad so cut that out and replaced it with eggplant and peppers, what a dill eh) That didn’t work, but still kept them out of the diet, stopped eating eggs as well, nope, tried dairy, nope, getting disillusioned along the way so of course cheated with my vice, chocolate along the way. What did i eat while i was doing this, broccoli, cauliflower, cabbage, sweet potato, brussell sprouts and meat for dinners, bacon, spinach, mushrooms, avocado, onion for breakfast and a lot of water and occasional coffee. nuts for snacks on occasion and some salad and fruit for lunch on occasion, as you know when you eat well you don’t need to eat lots. I also did the antibacterial wipes. At times it seemed like it may be getting somewhere but never really did. Soooo, i of course fell into the old habits, for about 10 days to 2 weeks now I have been in a slump I eat meat and sweet potato for tea if I feel like cooking at all, otherwise I was having toast or dry biscuits, i would eat chocolate and biscuits. (grains, I which they never invented them) I would have fish and chips (deep fried of course) with tomato sauce. And holy crap they are clearing up, I dont want to get to excited but I feel I have to share, I believe it may be the Brassica oleracea species. broccoli, cauliflower, cabbage etc for those who need to look it up as i did. I will be not eating any of this for some time and see if it gets better. In saying it is clearing up I mean the leakage has slowed, don’t have to change the padding as often, the bumps, that when slightly pushed, would hurt or burst are now 90% just marks on my skin without the pain or bursting. This is the first time, other than the antibiotics, that it has cleared up to any extent. So my fingers are crossed and i will let you know. I could not bring myself to taking photos for your book but applaud all those who have. I read the stories on here and feel for all of you who have it, i want to pass on some advice to those who want to give up, you are more than this disease so don’t let it consume you and take over your life. Do things that you can get away with, don’t sit down and do nothing it will drive you nuts. I love to swim but don’t so like primal girl am a crossfitter and have been for about 3 years now, you can wear big shorts doing that ha ha and nobody judges you one iota. I am also married, no children by choice, and i have to say my husband has never ever put me down because of it so i am super lucky there and I love him heaps. I hope you all find your trigger, just don’t ever stop looking for it because I believe it is there.

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  50. Thank you so much this condition is so embarrassing and yet so painful :( felt like I was the only person in the world with this aloha and mahalo!!!!!!!!!!!!!

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  51. This blog has been awesome to come across. I’m 23 and have had this issue since I was 16 which actually isn’t all that long I realize after reading some of these stories. I’ve been to over 15 different doctors and only last week was a plastic surgeon able to tell me what it was. I’ve seen my dermatologist multiple times and they never ever even mentioned this. The only thing that’s different about mine is I have no issues in my arm pits or butt. I have small round bumps on my groin that are painful but never pop or pus. My big problem is in between my breasts. I get bumps and boils all between my breasts. I’ve had it surgically removed twice, I did topical creams, low dose antibiotic for 6 weeks and now I am on accutane. The plastic surgeon I just saw told me it is HS and that there is no cure. Currently I have an open wound between my boobs that will not heal. Other than that, I have no other problems (although a boob hole is quite annoying). Please write back!! I JUST read this whole thing and now I am wondering if I should start cutting out night shades?? I’ve never even heard of them. I am not over weight, but not thin either. I’m doing weight watchers so I’ve been eating lots of fruits and veggies-LOTS of tomatoes and my favorite food ever is eggplant!!! I think I am stage 1 or 2. My question is…does it progress through the stages??? Will it get worse?! It’s bad now but it is in one or two areas. Those pictures are scary and I do not want it to get worse and be all over my body. Please help:(

    Reply
  52. Hi, I too have HS. It’s was severe but has improved over time. I am going to go Paleo and see if it resolves along with my other AI issues (Reynaud’s, arthritis, etc). Thanks for this wonderful post. Off to read Part II

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  53. Tara, I can’t wait for your book to come out on Amazon! I have had HS since I was about 14 (started with a small purplish bump on my inner thigh) and I am now 27. This has been the worst year of my HS to date. I have HS under my breasts and on my inner thigh/groin areas – and it is extremely painful. I can’t even sit or stand without wincing – no matter how much I want to exercise and get in shape, the pain from my HS stops me everytime. I figured out it was HS only about 2-3 years ago by doing my own research. Then, when I finally found a family doctor this year, she knew right away what it was and correctly pronounced the name (props to her!) but she said unfortunately there is no cure and she’d have to refer me to a dermatologist. The past 4 months is the worst it has ever been. I have a boyfriend of 4 years who I have not told about my condition for fear that he will be turned off by me. He already has asked what they were and I told him they were ingrown hairs…. knowing full well it was a lie. I am always self-conscious of covering my lesions with my hands while we are intimate, or I make sure the lights are off… I have become a pro at this. However, it has made me feel ashamed, gross, and my self-esteem suffers immensely because of it. I only recently (about 1 month ago) told someone for the first time, I told my older sister and it really took a load off my mind. I still did not tell her some things – like how disgusting my underwear smells after 3-4 hours of wearing it. I have to change my undies numerous times a day and then clean my groin area with a hot, damp cloth as the lesions constantly leak and produce a really putrid odor. I am so ashamed and sad that this is my life.

    Upon reading your blog, it really made me start to wonder about nightshades and wheat…. I eat wheat on a daily basis and I go through a bottle of hot sauce (made with cayenne peppers) easily every 2 weeks. I load hot sauce onto everything I eat!!! I also eat a lot of dairy products. I am hoping that when your book comes out, I can start implementing some of the changes to my diet that you’ve suggested.

    It definitely gives me peace of mind to know that i am not alone in this!

    Reply
  54. I am happy to report that from the first episode in April, I have been free of these abscesses now for over a month. (Praise the Lord!!!) I have been using the soap I read about in these comments, [Hibiclens Antimicrobial Skin Liquid Soap for surgeons], taking the Tumeric capsules (which is supposed to have natural anti-biotic qualities), and have been using “Warrior” Essential Oils (from Heritage Essential Oils) on the bottoms of my feet as well as putting Frankincense Essential Oils on my underarm area where the outbreaks occurred. I don’t know which one is working or if it’s a combination of the four, but it is working so far, I know that for me, at least, (unlike women posting on-line) it is not sugar- related or stress-related since we just came thru’ the wedding of one of my children which meant that too many sweets were taken in and the stress-level was huge w/ all the things we did to prepare for the wedding.
    The scars from the previous eruptions are still there, but there’s no evidence of any new ones coming on, thankfully!

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  55. I would love to learn more about the diet part, im a sufferer 17 years ,new baby, going in for my third major surugy in a month , three more surgurys after that too… Im desperately seeking help, i need a better quality of life for my baby..can u facebook me at victoria kezer i live in brookings,or

    Reply
    • Hi Victoria,
      You can find all the information you need to conquer this disease in my book The Hidden Plague (by Tara Grant). It’s available on Amazon and Barnes & Noble. I’ve got detailed information about the food, so you should be able to get started on your own while you look for a food coach.

      Reply
  56. Also have pcos and after i pushed myself to ignore the pain i lost 130 pounds, then after ten yrs of trying to get preg o did yay, but the hormone changes caused my hs to nutz!!!! Also when i pms my lumps go nutz!!!! This disease is so hard to ignore especially since my lumps got mrsa in delivery room…. I need a food coach to help me

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  57. This is fantastic information…thank you so, so much for sharing. I am 30 years old and of average weight; although I’ve always had acne, I never suffered from HS until recently. Just a couple of months ago, after going through a bout of colds and having a weakened immune system as a result, I began to notice lumps and swelling in my armpits. My first trip to the doctor was fruitless, but a second trip resulted in an HS diagnosis. I’m looking forward to reading your book and am planning to go on a Paleo diet (though I love tomatoes, so this will not be easy…). What I don’t understand is how HS could occur so suddenly and at a relatively late age – I know that most folks get this condition in puberty, and it’s so odd that it would just appear out of the blue at age 30.

    Thank you so much! I look forward to trying these remedies!

    Reply
    • Kristin, I got it out of the blue at age 23, average weight, too, and I have never had any acne, in fact, people have always talked about my “perfect” skin. And I got my HS diagnosis a couple of years after. I think 23 is the average age for HS to start. The Paleo diet does include tomatoes but with HS tomatoes can be a trigger for a flareup because they are nightshades. For me, I have a terrible problem with raw tomatoes but have tried having cooked tomato paste on occasion and I’m fine but that was after eliminating All tomatoes for many months. This approach to changing diet is absolutely the best way to go and if you’re in an early stage of HS you may never ever have to face any other stages. Good luck!

      Reply
      • Mine started in college, when I was about 19-20. Glad Terra has shared a Paleo approach that will help people. I also take Betaine HCI for reflux and as a side effect, it seems to be helping the HS, too….probably by improving some gut issues.

        Reply
  58. Your page changed my life. I was so ashamed and embarrassed to discuss this topic, so I never mentioned it to a single soul. I was too shy to even google my horrible symptoms. Thank God for Pinterest that lead me to you. I’m so thankful. Thank you.

    Reply
    • We will always be here to support you. Are you reading the book?

      Reply
  59. Hi there, I also do have HS in my groin area for about 15 years now. I first got it when Im 13 years old… Everyday for the past 15 years im always in pain especially when the boil like bump is accumulating puss. Recently a new bump appears beside the original bump and the pain doubles. Im planning to have it surgically removed. Im consulting you guys what are the possible effects of surgery? I mean will it be reborn (if yes how long), will it be reborn in other parts of my body?… I am so depressed really. By the way Im from the Philippines and I dont think there are expert doctors here compared from people having it in first world countries. Thanks in advance for the advice.

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  60. Hi I also have HS from the past 15 years since Im 13years old. I have it in my groin area and everyday i am always in pain. Recently another bump appears and releases puss near the original bump (which constantly releasing puss everyday for the past 15 years). I am very depressed and planning to have it surgically removed. I will ask for your opinion about it for those of you who’ve have had surgeries. Im from the Philippines so looking for experts are rare.

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  61. Well, I am confused. I had what I thought were pimples under my arm until one became bigger and had pus in it and I realized it was a boil. I have had diabetes type 2 for the past 4 years and my blood sugar numbers are excellent (A1C of 5.9 last month) but even so I knew I had to see a doctor. I also eat low carb (fewer than 50 net carbs a day). I couldn’t get an appointment until next week and I was in pain so I went to Urgent Care and the doctor told me I had Hidradenitis Suppurativa and might need to have surgery. But here’s the thing. I’m a 64 year old woman and have been postmenopausal for 10 years. I read one study which stated that there were 2.6 cases per 100,000 60-year old+ women I am hoping I don’t have it. This is not a lottery I want to win.

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  62. I am reading the book but I am very confused about what to eat plus I am a diabetic as well so I have to be careful. Please help. This is so painful

    Reply
    • Sarah try emailing Tara for specific questions and look for the HS diet support groups on facebook. The details are there and it’s not as confusing as it seems at first it’s just overwhelming if you’ve never been introduced to these kind of changes before.

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  63. Wow!! I have found a name for what I have been suffering from as an adult/ The doctors, didn’t have a clue, it was here put this cream on, and go soak, I couldn’t even go to work the first time it occurred…

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  64. I suffer from HS also, but I am not in remission after 6 months of Paleo. I also am like the rest, where it took 15 years for someone to finally tell me what I had. Doctors just looked at me puzzled all the time. I was in the Navy for 14 years and they were clueless as to what to do, so I would drain the lesions myself underway on a ship! I was awful, the conditions I lived in a worked in just made it worse all the time. After I got out of the Navy I started doing Crossfit and was told about the Paleo diet, and it completely changed my life. I never thought I would be rid of this and it would haunt me forever. Today I do not have any lesions and I can wear a bathing suit, go to the gym, and my life doesn’t revolve around how sore a lesion will be tomorrow. It is life changing!

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  65. I haven’t read all the comments, so please forgive if some of this has already been said. My HS didn’t become severe until after my (early) menopause, so that puts that argument out the window. I have just returned from a visit to my EIGHTH dermatologist, the fourth in a row who didn’t bother to so much as touch me. She will be the last dermatologist I ever visit on purpose. If my skin is falling off, I will go to ANYONE but a dermatologist. They have blamed me from the beginning, and I have bought it, hook, line, and sinker. I’m done with that now. I’m done being dismissed and looked at as though I am disgusting by doctors. She said, “it’s not my specialty.” You are a DERMATOLOGIST. Skin is, by definition, your specialty. They just can’t be bothered. And I can’t take the psychological wallop that comes from a doctor who refuses to touch me.

    I had surgery last year on the ones on my buttocks. It cost me seven weeks of work, and wasn’t a permanent cure. My buttocks ones are back with a vengeance. The lesions on and under my breasts are so painful I can barely sit up straight, which causes back and shoulder pain as well.

    I am finally realizing that I need to make some drastic changes in my life to have any hope of living a normal life. I know that my diet has been abysmal. I quit smoking back in November and, if anything, my HS has gotten worse since then. My psychology gets worse every day and I think that my HS is a physical manifestation of my core belief, which has always been, “you are disgusting.” I have looked into a holistic/homeopathic/naturopathic practitioner in my area and am going to make an appointment with him as soon as possible, hoping against hope that we can work together to find an answer.

    I am scared to give up my favorite foods…mostly that I will FAIL…but I am willing to try anything to give myself some hope of being able to walk, work, breathe without constant, unrelenting pain. I have never heard of primal/paleo, etc. until I read your blog post, so I’ll be researching that as well.

    Thank you for your compassionate voice and for giving one to the rest of us who have lived in shame for such a long time.

    Reply
  66. Hi there, I have suffered from HS for 20 years and only had a diagnoses 2 years ago after having plastic surgery in my groin area on both sides. They confirmed it with a biopsy of the tissue taken from the area. However, In the last 6 months I have had boils appear in numbers on my buttocks and supper legs, they are extremely painful and have a vast amount of scar tissue already in just 6 months. I really really will try anything to get rid of this horrible disease! Please help. x

    Reply
  67. Great read Primagirl! I am planning to attempt this paleo diet with optimistic hopes thank you for sharing. As a sufferer from HS I know how debilitating and shameful this disease is.. so one thing I absolutely cannot stand is people trying to capitalize on this! (I AM ABOUT TO RANT BUT PLEASE NOT THIS IS NOT AT ALL AN ATTACK ON PRIMAGIRL) What I mean specifically is the post by Henry who claims that there is a treatment through his company Lux Research. A simple google search will yield results of the same comment being posted in multiple places with the exact same text. Further, on a site called “I Beat Hidradenitis” the exact website layout and font is used as the main site for the previously mentioned medicine (could be a coincidence but probably made by the same people…) Lastly, if you do a simple google map search of their company, IT DOESN’T EXIST!!! NOR DOES THE POSTAL CODE AT ALL (which is V3T 3PG according to their main site). I have no definitive proof, but to all reading their claims, take it with a grain of salt and be very skeptic. No real testimonials have been posted either. They charge $100+ for a treatment and scam the unlucky like the shits they are… IF YOU SEE THEM POST ANYWHERE, PLEASE REPOST THIS COMMENT OR LET PEOPLE KNOW SO NO ONE FALLS FOR THIS SCAM OR WASTES TIME RESEARCHING IT!!! (AGAIN, THIS POST IS NOT AT ALL DIRECTED TO PRIMAGIRLS ADVICE, RATHER THE SCAM OF LUX RESEARCH)

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Trackbacks/Pingbacks

  1. Primalgirl Update: Hidradenitis Suppurativa « Primal Girl in a Modern World - [...] finally written a candid account of a disease I’ve been suffering with for decades. You have probably never heard …
  2. Primalgirl Opens Up: Hidradenitis Suppurativa Part 2 | Primal Girl in a Modern World - [...] Primal Girl in a Modern World …Living a Paleo Lifestyle in a Cultural Wasteland Skip to content …
  3. How Tara put Hidradenitis Suppurativa into remission with a paleo diet - [...] check out my first blog post about HS so that you can potentially help someone with this condition. There …
  4. Putting Hidradenitis Suppurativa Into Remission | | DEKA CROSSFITDEKA CROSSFIT - [...] check out my first blog post about HS so that you can potentially help someone with this condition. There …
  5. Round 2 {birthdays, bipolar, and antisugar} - Page 20 | Mark's Daily Apple Health and Fitness Forum page 20 - [...] the bumps were normal. I guess not AND it's linked to PCOS, etc (and PCOS is like Endo's cousin). …
  6. Figuring things out « Primal Fast - [...] part 1 [...]
  7. My Journey to Low Carb: Part 1: Did I have PCOS? - [...] been. My face was covered in painful cystic acne. A condition I had been suffering from called Hidradenitis Suppurativa …
  8. Where Are They Now? | Mark's Daily Apple - [...] still blog at www.primalgirl.com. I recently had a couple posts about a nasty autoimmune condition called Hidradenitis Suppurativa that …
  9. Primalgirl Opens Up: Hidradenitis Suppurativa Part 2 | www.primalgirl.com - […] response to my last post on Hidradenitis Suppurativa (HS) has been overwhelming and […]
  10. Living on the wild side… - A WordPress Site - […] I was reading a thread from an HS forum and someone mentioned Primal Girl and her battle and subsequent …
  11. Hidradenitis Supurativa o acné inverso (Parte I) | Pack WordPress - […] http://www.primalgirl.com/2012/03/05/primalgirl-opens-up-hidradenitis-suppurativa-part-i/ A continuación el primer post traducido: “Advertencia: Este post es gráfico y sincero.Si […]

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