Putting Hidradenitis Suppurativa Into Remission

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I have had a condition called Hidradenitis Suppurativa (HS) for over 20 years. Never heard of it? I’m not surprised. It’s the Leprosy of the 21st century. HS sufferers will inadvertently break out in boils and cysts in delicate areas of their bodies – armpits, groin, buttocks, upper thighs – which can take months to heal. It looks like the worst STD you’ve ever seen. HS isn’t contagious, but it is painful – and embarrassing. The fact that you haven’t heard of HS before now isn’t surprising at all. I didn’t even tell my parents about it until last year. What is surprising is as soon as I opened up and admitted that I had it, so did a bunch of other people:

One of my best friends. My hairdresser. A colleague. Relatives. Countless anonymous comments from all over the world on my blog. People desperate for help, desperate to just put a name to the condition that they have been plagued with for years, a condition they have kept quiet about. Desperate for a treatment so they can finally stop suffering and start living.

Even if you don’t have HS yourself, I guarantee that you know someone that does. We hide it. We’re the ones that don’t go to pool parties or sleepovers when we’re young. We’re afraid of being intimate as we get older, we don’t wear tank tops and we might miss a lot of work. You may notice us wince when we sit down, but you’ll never hear an honest reaction; our screams of pain would drown out all conversation in a room if we let them out.

I have seen numerous doctors over the years for my HS and none were helpful at all. Most didn’t know what it was. Some even suggested that the disease was my fault. Since they didn’t have a drug to fix it, it must somehow be my doing. Over 1 million people in the US have been diagnosed with HS, but experts estimate there are over 12 million in the US alone who don’t have an official diagnosis.

Doctors don’t have a treatment plan for HS. The only option a dermatologist can suggest is a daily course of antibiotics for the rest of your life, antimicrobial body wash and surgery if the lesions become too painful. These treatment options are not effective at all. In some people, antibiotics seem to work for a month or two, but then suddenly stop working.  Now they have HS, IBS and a compromised immune system. Hooray!

When I turned to a Primal diet, I had a huge reduction in the number of flare-ups I was having. It seemed to me that I was on my way to recovery. I was convinced that the HS was somehow caused by sugar. However, 2 and a half years into my Primal journey, I was still having outbreaks occasionally. I couldn’t explain them. It was then that I went to the dermatologist and was told that HS has no cure and that I would have to suffer for the rest of my life no matter what I did.

I decided to ask Loren Cordain about HS when I interviewed him at the AHS last summer. He mentioned that he thought HS might have an autoimmune component but other than that, he didn’t have any information. The fact that he had heard of it at all was reassuring. Plus he had mentioned a very pertinent word: Autoimmune.

Autoimmune condition. Autoimmunity. Autoimmune protocol.

It’s easy for those of us in the Paleo community to forget there may have been a time when we didn’t understand what those terms meant. An autoimmune condition was Multiple Sclerosis or Lupus. It was serious and sometimes fatal. No one had a cure. All we could do was hope and pray that we didn’t fall victim to Fate.

It’s also easy to forget that traditional doctors don’t know much about autoimmune conditions, either. Sure, we realize that they don’t know much about nutrition and its impact on health, but deep down we frantically hope to whatever Gods we pray to that they know something. When we have a serious condition or an emergency – something that stops us from living our lives – it’s usually to a doctor that we will turn.

Could getting rid of a disease I had been suffering from for over two decades be that simple? I had heard Robb Wolf talking about autoimmune conditions on his podcast, and I knew that he had an autoimmune protocol on his website. Since I was already mostly Paleo, I immediately started cutting out potential hazards, starting with dairy and nuts. No change.  During this time, I discovered that my children’s psoriasis was caused by nightshades. I eliminated all nightshades from the family’s diet and…that’s all it took.

My kids haven’t had a psoriasis flare-up for over 6 months. The last HS outbreak I had was on October 22 of last year. It was also the last time I ate potatoes. I have managed to keep my HS in complete remission for over 5 months by just avoiding a single food group. A food group that has itself deeply entrenched in the Standard American Diet – and even the diet of some of the most devout Paleo followers.

I believe that through self-experimentation and elimination I have proven that Hidradenitis Suppurativa is an autoimmune condition. It is not caused by bacteria or sugar and it cannot be cured by putting salves, herbs or creams on the lesions – or even having the lesions carved out of your body. It isn’t tied to menstrual cycles as is commonly believed (men have it too, after all) nor is it caused by wearing bras or polyester underwear. There has been some discussion connecting HS to smoking. Sure. Tobacco is a nightshade.I smoked for years – that may have been what caused it to appear in the first place. I’ll never know now, but it doesn’t really matter.

I have been in remission now for so long that even my scars have faded – something I never thought would happen. I have also managed to figure out how each individual fruit or vegetable in the nightshade family affects me. Tobacco = hangover and IBS. Tomatoes = canker sores. Peppers = cystic acne on head and face. Potatoes = HS boils. (Eggplants = I don’t know, they are so disgusting I can’t bring myself to eat them ever again, sorry. I won’t be doing further experimentation with tobacco, either.)

Please check out my first blog post about HS so that you can potentially help someone with this condition. There is a lot more to it than just applying treatment. I myself considered suicide on more than one occasion. Even now, I liken this to “coming out of the closet.” I am airing my most closely guarded secret for the whole world to read, in the hopes that I can help just one other person avoid the emotional and physical scarring that HS can cause. I want to raise awareness about this condition and the fact that there IS an effective treatment. You don’t have to suffer.

In a second post, I discuss how I came to realize what my triggers are and how you can find yours by following Robb Wolf’s Autoimmune Protocol. I have also included some pretty gruesome pictures of HS that I found online.  Please check them out. I’ve talked to people who actually have Stage 1 HS but thought it was just “lumps” that came and went.

Nightshades turned out to be my trigger, but it won’t be the same for everyone. By following the Autoimmune Protocol, you can figure out which different food groups affect you – and which ones don’t.

 

Tara Grant

www.primalgirl.com

primalgirlpower@gmail.com

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  1. Nikhil Hogan
    April 9, 2012 at 3:09 pm

    How awesome that Paleo is fixing all these autoimmune disorders that conventional medicine has no clue about!

  2. Sonya
    April 11, 2012 at 10:53 am

    WOW! Tara, I’m so going to check out your blog! Thank you for speaking out!

    I, too, have HS with PCOS to boot. I’ve noticed a big difference in my skin since going paleo but have a love affair with nightshades that I have periodically thought I should cut out for a bit to see if the love affair is actually a love-hate relationship. You’ve inspired me to get serious about figuring out my own triggers and to quit just putting up with the HS outbreaks.

    Mine started when I hit puberty and I wasn’t a smoker then. ;-) Imagine a 12 year old being told she’s fat and dirty (I was NOT fat!) Most of the doctors I saw for my HS didn’t know what it was either and told me I was too fat and needed to take 3 baths a day. Grrrr…..

    • Oz
      September 12, 2012 at 4:49 am

      I’ve been diagnosed with HS just last week. It only took a second for my doctor to realize what disease it was after looking at my armpit lesion. I’ve been prescribed a 3 month course of Oratane 20mg, a 6 week course of antibiotics and topical creams. I have seen a slight improvement since I began the medication.

      I think I’ll start with the autoimmune paleo diet aswell for maximum efficiency, though it will be hard to give up potatoes.:(

      Will keep updating on the progress.

    • suresh
      February 23, 2013 at 11:02 pm

      dear friend ,i too having hydradeneties ,did u got solution for that because i am ashamed of having this disease in me ,so i want to get rid of this one if you got some solution means please let me know as soon as possible

  3. Molly
    April 11, 2012 at 9:32 pm

    Thank you so much for posting this. I have suffered from this for most of my 54 years and thought it was my weight or fatty eating habits. Now I know! WOW! I’m so grateful.

  4. Maria
    April 16, 2012 at 7:05 pm

    Looking forward to reading the entire article. Dr. Iltefat H. Hamzavi @ Henry Ford Dermatology in Detroit has been conducting clinical trials and believes it is a follicular disorder. He also speaks to AI and diet as triggers. They are wonderful there and treat me with dignity and respect it was so refreshing. Fried foods, sugar and hormones are triggers for me as well as my fibro and chronic myofascial pain.

  5. Brissia
    April 17, 2012 at 12:55 pm

    Thank you for sharing your story and I am so happy to hear you are finally getting a chance to heal both emotionally and physically. Keep on truckin’ and spreading the word!

  6. Chad
    April 17, 2012 at 8:06 pm

    Have you heard of Lichen Sclerosis? The symptoms sound very similar, and I have thought that it may be related to diet as well. My 7yo daughter has been struggling to get this under control for just over a year. Through a variety of steroid salves and other creams, it is at least relatively in control. Initially it was only in the groin area, but recently it has popped up in a few areas like her shoulder, back and forehead. In these areas it seems to be little more than a white spot that resembles scar tissue. She had more recently started having stomach issues as well. We thought initially she had the flu, but the vomiting would come and go over and over. We have no idea what is triggering it, but I am thinking at the very least doing Robb’s auto immune diet may produce some results. I initially wanted to blame gluten, but the results came back negative. Any thoughts or advice would be greatly appreciated.

    • Louise
      June 19, 2012 at 4:09 pm

      To Chad, regarding Lichen Sclerosis. I just want you to know that my heart goes out to your daughter. I am in my mid 30s and have a very difficult time with it, I cannot imagine having to deal with it as a child. The mommy in me just wants to send a great big hug…

      My first diagnosis came from a lesion on my buttock that was biopsied and diagnosed as Psoriasis, however as the condition grew to include more area of the groin the vulvar specialist that I saw said it looked a lot like Lichen Sclerosis. He decided not to biopsy again, since a biopsy is painful and the treatment would be the same whether it was just more Psoriais or an additional autoimmune disorder, Lichen Sclerosis. Either way… very strong steroids.

      My interest in the Paleo diet is new, however I put myself on a similar diet about a year and a half ago with really wonderful results. I just took everything that I had heard could cause psoriasis out of my diet. Since different sources blame different foods, I ended up going caffeine-free, dairy-free, gluten-free, refined sugar-free, nightshade-free, vinegar-free and cooked everything from scratch, so no processed foods. It was amazing to see the disease disappear and my scars fade over time.

      Its a long story, but staying on a very strict diet like this was difficult and more so because I didn’t understand why it worked…(still hadn’t heard of the science or even the term Paleo Diet at this point) So I began allowing these various food groups into my life again and after several months my Psoriasis, Lichen, as well as Arthritis, Acne, and Depression were all tormenting me. (Was the depression because I felt itchy and awful again or a symptom on its own – who knows?!)

      I had decided to just go dairy/gluten free and see if that would be enough. A friend mentioned the diet she was on – the Paleo diet – did not allow legumes. So when my Psoriasis/Lichen flared up really really bad after beans, I started making the connections. I now know why my previous diet seemed to work, and I am anxious to see the results of the Paleo Autoimmune Protocol in my life again.

      I sincerely hope that the protocol can help your daughter. Best wishes.

      PS I was tested for gluten/celiac and it was negative, as was the egg/dairy allergy. But there seems to be something to this diet, despite the negative allergy tests.

    • Jenay
      February 11, 2014 at 10:50 pm

      Hey so I had the same exact thing! I had a biopsy at 20 years old and it come back positive for Lichen Sclerosis. The only thing they could give me as a treatment is Clobatesol and I had to use it 2 times a day for the rest of my life. I later found out that it thins the skin over time and causes tearing so makes the issue worse over time even if it helps temporarily. I tried everything. I was getting bacterial and yeast infection all the time. Honestly I never thought I would say this but when marijuana became legal I got my medical card. It has a cannabanoid that is not only an auto-immunosuppressant but also anti-inflammatory properties. I bought medical grade Rick Simpson Oil and put a drop in an empty capsule filled with coconut only and took it before bed each night. With in a month I could keep food down, my infections were gone, psorasis gone, excema nonexistant and so much better! NO Lichen Sclerosis! My gyn was impressed that the cream was working so fast. I kept going in every month to have her check on it and till it was nothing to see! She said I could lower my dose of clobetasol. I then told her I hadnt been using the steroid cream for 4 months. She was so impressed and honestly had no idea why it worked…. It is worth a try if anything. It really saved my early 20s from being pretty much pain and hopelessness. Just think about it. I had no one say anything that helped except that and now I dont even have to take the oil every night. It turned into twice a week then once and even lower… Honestly try it!! :) Good luck! If you have any questions on specifics just email me at jenayh1221@hotmail.com

  7. Kristi
    April 20, 2012 at 9:21 am

    Thanks so much for sharing your story! I also have HS, and I haven’t seen a huge difference since I started eating paleo, but now I think I’ll try cutting out the nightshades and see what happens. I would so love to not have to worry about it…I just had my fourth surgery for it and I feel so helpless and defeated trying to do anything about it.

    • rene
      July 23, 2013 at 6:04 am

      have you seen any results since cuttingback on nightshades?

  8. Jessica
    April 24, 2012 at 7:14 pm

    This is a reply to Chad’s questions. I also have HS (as well as the closely linked AI disperder, Hashimoto’s Thyroiditis) and have been following Tara’s (primalgirl.com) posts on this topic. I looked up Lichen Sclerosus after reading your comment. Both conditions seem to be autoimmune responses, but Lichen Sclerosus differs from HS in appearance. If you look at the original article on primalgirl.com, the photos of HS sufferers are very different, according to your description as well as what I read on mayoclinic.com
    I’m sure that this must be very difficult for your daughter. I would definitely suggest Robb’s autoimmune protocol, because it definitely won’t hurt – and who knows, it may help! Robb’s AI Paleo protocol, as well as checking out the GAPS diet may be healing for her digestive disorder. For many reasons, I would not rule out gluten as being a trigger. Gluten sensitivity or intolerance often does not show up in test results.

  9. Reed
    May 9, 2012 at 12:42 pm

    There’s a new institute in Ohio that has opened recently specifically for the treatment of hidradenitis suppurativa called the Hidradenitis Suppurativa Institute check them out at the links I provided.

  10. Brandon S.
    May 14, 2012 at 9:47 am

    I appreciate what you’re saying here and am beyond elated that this worked for you. However, what worked for you is part of the problem with HS.

    No one knows what causes it. Some believe it is an autoimmune condition and use immunosuppressant therapies. Others think it is general inflammatory issues and thus use steroids. Others still think the issue is in the apocrine sweat glands and try removing them from the affected areas with surgery. None of the aforementioned treatments work universally or even consistently with the same patients. The removal of the apocrine sweat glands + skin grafts has been show to be EXTREMELY ineffective and can even aggravate the condition. The reality of the situation is no real research is being done so no one really knows the cause.

    Part of the reason why so little is known about it is because people are ashamed to come forward and openly discuss this disease, I just did today with friends. Secondly when individuals who die have the condition it isn’t reported. Currently estimates are at 4% to .2% of the population suffering from this disease.

    I SINCERELY hope you stay in remission and that this continues to work for you and work for others.

    Currently the only treatment showing any SERIOUS promise is carbon dioxide laser excision. For those of you who have commented on here saying you suffer from this condition please check out this link from the US National Institute of Health http://www.ncbi.nlm.nih.gov/pubmed/8609261

  11. Linda
    June 24, 2012 at 11:16 am

    Glad u found something that works for you. i have had severe HS for over 22. i totally agrees with
    Brandon S. there are many theories.

  12. Bee
    July 12, 2012 at 3:10 pm

    I went searching for answers and hadn’t seen this article before. I woke up with a sore today. I ate potatoes yesterday. Today, I will begin to find my triggers. I tried cutting out gluten with no luck and gave up, but I need to keep searching. I’m convinced that something I’m eating is causing this. I’m so tired of the pain and humiliation. Thanks so much for putting yourself out there like this.

  13. Gabby
    August 10, 2012 at 3:38 am

    How do I know what my triggers r? I’ve been dealing with this now for a year. I’ve been set up to see a dermatologist so I will definitely be asking questions. For all those that have endured this horrible disease for years I pray and hope for a cure.

  14. Greg
    August 11, 2012 at 2:51 am

    I have suffered HS for 20yrs.i have found good quality medical cannabis does the trick.
    Might not work for everyone but worth a try if you can access it.
    And yes i have tried everything.

  15. LuluGurl
    August 12, 2012 at 7:05 am

    Hi,

    Great that you found something that works. I am a 7 year sufferer (42 yrs old) and during my entire pregnancy and breastfeeding I ate both healthy and greasy meals – lots of dairy, meat, tomatoes, chips, vegetables from all food groups and had minimal lesions (one a month).

    I weaned for one week and developed 7 lesions in one night on my 7th day of weaning. I resumed breastfeeding and lesions faded.

    So, for me, hormonal elements are definitely at play.

    Looking forward to a cure!

    • Gina
      September 13, 2012 at 6:10 pm

      I’ve had HS for years since middle school actually so really almost 2 decades. 2 months before my pregnancy I had a lesion removed and it was fine throughout my pregnancy and breastfeeding once I stopped I developed a lesion in the exact same spot. I turned to “dr. google” wondering why (this was going to be the 5th surgical removal I had to remove these things) and it turns out that many women go into remission during pregnancy. I had the lesion removed, lost 40 lbs (about 10lbs below my pre-pregnancy weight I now have a BMI of about 20.5), cut dairy out of my diet entirely, started a plant based non processed food diet, as well as taking sea buckthorn oil capsules. This has worked for me it may or may not work for you it seems managing HS is highly individualized but I figured out what works for me by reading what worked for others and trial and error. Good luck

  16. lulugurl
    August 12, 2012 at 7:12 am

    Also – I periodically google Hydradenitis Superativa and latest date i.e. 2012 for the latest news and recently these have been popping up re – HS being a biofilm type of bacteria.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1574-695X.2012.00946.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

  17. Kristi
    August 18, 2012 at 12:01 am

    Nomato products have REALLY helped the mental side of dealing with hidradenitis suppurativa for me. It was hard giving up foods that I loved, and these products really helped fill the voids!! You can order their products here: http://www.nomato.com/index.htm

  18. Melissa
    August 23, 2012 at 11:53 pm

    I have only recently discovered that HS is what I’ve been suffering from for the last 15 years. Like most people with this horrible illness i was mis diagnosed and told they were cysts or boils and was cut into and put on long term antibiotics. I also didn’t tell anyone and suffered in silence. I would get a flare up every month around the time i was due for my period. The lumps would last about a week. It was so painful and embarrassing.
    About a year ago i met the man i am now engaged to and with his help i quit smoking and i havnt had one flare up since. Just this week i found sites online and discovered that a few of them actually say that smoking could be the onset and that giving up can bring on remission. This has given me great hope as mine did begin around the time i began smoking as a teenager. I still have scars i don’t think will ever heal, but here’s to hoping we can be free from it eventually. So great to know there are others in the same situation. I highly recommend that if anyone suffering from this illness is a smoker to try and quit as it has seemed to work for me so far. Fingers crossed. Good luck.

    • Otilia
      December 25, 2012 at 1:45 pm

      Hi Melisa,

      I think we have to acknowledge that hidradenitis is an incurable condition that requires life long management. When you find the triggers by trial and error you try to eliminate them from your diet or lifestyle. Smoking is definetly an aggravating factor, so is stress. I don’t know how to react when doctors tell you to eliminate stress from your life, but we can do our best. Here is more http://www.curehidradenitis.com/how-to-cure-hidradenitis-suppurativa/
      Good luck and stay strong!

    • Barbara
      September 25, 2013 at 10:56 pm

      Congratulations on finding something that works for you. I think it is worth noting that nicotine is a nightshade. Of course there are all sorts of bad things in cigarettes besides whatever comes from the nightshade connection, so of course it doesn’t have to be that, but it is interesting.
      Good luck.

  19. Katie E.
    September 10, 2012 at 8:47 pm

    I am so inspired. I have battled HS since roughly the age of eleven, so about 16 or 17 years. The doctors I’ve seen have either been intirely unaware of HS or sympathetic and suggest only surgery as a realistic option. Like most, I have suffered in silence and only managed to put a name to my condition last year.

    I only just heard of Paleo today and after reading this article I am now motivated to look for triggers in my diet. I don’t even know where to start. I’ll read up on the many links posted here, but my big question is how long does it take before you realize a certain food was a trigger? I have scheduled an appointment with a new doctor that won’t be for a few months, so anything I can learn before then will be most helpful. I have also struggled with constant moderate acne since my teens. Seems it may all tie together?

    • Christopher
      September 10, 2012 at 9:07 pm

      Maybe try the autoimmune protocol for a while and see if there’s any improvement.
      Chris Kresser has some good posts recently in regards to skin (and acne). Here’s part 3, which has links to part 1 and 2 http://chriskresser.com/nutrition-for-healthy-skin-part-3

      • Katie E.
        September 14, 2012 at 10:33 pm

        Thanks! I’ve been reading up on it this week, and devising my plan of attack so I don’t get overwhelmed with all these new dietary restrictions all at once. :)

  20. Shavona Templeton
    September 14, 2012 at 3:38 am

    Thank you so much for sharing! I am 22 and was diagnosed with HS when I was 12! I’ve always been very insecure about this and it caused so many issues in my life. The more I read your story and the diet plan of things to avoid! I realized that’s what I’ve eaten the majority of my life! Spagetthi with tomatoes, I love and add bell peppers to a lot of foods! Potatoes and chicken nuggets as well! Recent I went on a low carb diet, limiting potatoes and breads and all that.. I also had my appendix removed and a thing called meckels diverticulum removed about a month ago… Since surgery and dieting I have not seen a flare up in 3 weeks! Except a few days ago I ate bell peppers on pizza and NOW after reading this, I realized I had a flare up within 24 hours of that! I use to think having intimacy was what caused it or not moisturizing enough would cause it flare up more. Since I had my daughter a year ago and put a few extra pounds on, it’s gotten way worse then anytime in my whole life! I’m so thankful for your time, effort and compassion about HS! I wish doctors would care more, I hear a lot of people ‘coming out’ with it after they hear about others.. It’s not a diesese and no we aren’t sick with STD’s… Although it looks gross it’s not contagious. Some people don’t understand but this is no different than anything else anyone has ever struggled with! I’m so thankful I came across this! I shared it on Facebook and will tell many more! You’re awesome! Get on doctor oz please

  21. Meg
    September 24, 2012 at 4:55 am

    wow!!!!
    this is awesome!!!

    I have been looking into the paleo/auto immune diets for a while now, because I have been struggling to keep a pregnancy. we have had 15 losses, and NO explanations. had every test under the sun done, and ” no cause found”. But recently, I have begun to think it is auto immune related, because I also have HS ( have ever since I was a teen, and my father also had it, and had auto immune, adult onset diabeties , type 1)

    every time I get pregnant, I break out with HS issues, and as soon as I miscarry, they start to go away. pregnancy can trigger a auto immune response. But I also notice I get them when I eat sugars and starch, and junk…so I went looking around and found this post!!

    This solidifies it, I am going to work on going paleo! !!

  22. Kristin R
    October 19, 2012 at 11:07 pm

    I am not sure how old this is but this made me cry it made me happy and it made me sad…I just had sugery on wednesday for HS was told i had psoriasis at 14 didnt learn till years later from and ER doc that it was in no way psoriasis he told me this and i looked it up it was key on it would take way to long to tell you everything i have been through in 8 year with HS from doctors blaming me not knowing and not caring this hit everything on key i wish i would have found this sooner thanks all i will be looking more into all this to help my self get better thanks so much you will never know

  23. thomas babs
    October 21, 2012 at 12:41 pm

    I’ve had this torture for ten years. I know people don’t like the word cure as related to it, but I did cured mine through diet changes. In my experienxce. I’ve learned that what causes HS, at least for me, are MAMMAL products. that’s why neither the paleo diet nor a dairy-free diet help thoroughly, even though they do help a lot. following them, one eats very few MAMMAL products anyway, but that’s not enough. ALL mammal products must be removed from your diet for the cure to work to the full.

    my theory is that there’s something in mammal products, possible lactose (which may be either added to red meat as a conservative or present in it naturally, through “breastfeeding”) or a combination of lactose and something else, that our bodies can’t process. at first, they try to store it, when the junk becomes too much, it starts to leak out, causing the boils. that’s why it’s so awfully recurrent. at times you may be eating so few mammal products by chance that your body is capable of storing the “junk” internally. once you eat too much of it again, the internal accumulation starts leaking through the lesions all over again.

    I did cure mine. it starts to clean as soon as you remove all Mammal products from your diet. since the junk that is already in you has to come out anyway, it may become worse at first, but that’s okay, for you’ll notice the boils are healing, instead of just bursting anew. It took my body almost a year to clean itself up for good and I was only at stage 1, possibly going into stage 2, when I started this diet.

    I don’t think it’s autoimmune at all. it appears autoimmune, though, because our bodies are actually fighting an attack on them, but not one caused by themselves. Doctors should lose their licenses over the way they treat us. the faces of disgust they make… the accusations they throw at us (“I paid a fortune to go through medical school, if I don’t know a cure for it, it has to your fault, otherwise I’m an idiot”) even though most know nothing at all about this are almost criminal in nature. I’m sure the worst ones may have driven some HS-sufferers into suicide with their ignorance. and since there’s no drug to treat it, nobody seems to care about researching a disease that won’t turn a profit…

    anyway, this did work for me and I’ve been reading some similar testimonial online. I’m male, though. Since female bodies produce milk and therefore lactose on their own, it might be different to women, especially when breastfeeding, when they might get it from their own milk. I think a woman’s breast can be stimulated into producing milk even without her having been pregnant, so maybe women should also look into this issue. They should minimize their milk-producing capacity as much as they can, even when not expecting.

    this is only my experience. maybe other stuff causes HS in other people, but I’m pretty sure now that it’s diet-related. I hope I can help someone.

    thanks

    • Yashar
      August 9, 2013 at 4:13 pm

      Hi,
      I’m also male. I’m from Norway and basically most of doctors here in Norway are morons (sorry for the language). I’m a dentistry student with lots of knowledge in basic immunology and physiology. After many months of searching and going to many dermatologists, I had to come up with the diagnosis myself. I started to get these boils about 2 years ago (I’m 26 now). I got them underneath my left ear and in the inguinal region. Since the begining I knew that this was related to the food I ate. I have eaten very healthy my entire life. My problem began with cystic acne every time I ate a little too much sugary stuff (candy), chocklate. But after a while, I got lesions that were way too deep, painful, big, filled with pus and way too persisten (lasted for months). So, I figured it was something else. It couldn’t be a regular cystic acne.

      So, I thought there is something in common with HS and cystic acnes. So I found something interesting. “All food that spikes the IGF-1 levels in your blood” was the common ground for all these skin lesions.

      So what are these foods:
      - Diary products
      - Carbohydrates with high GI
      - And artificial sweetners like aspartame, cyclomate, sucralose etc

      Now, this info was gathered by myself from various sources. I have cut out all of these categories and I have been without a single lesion for 2 weeks. I can swear that these things are the triggers for lesions like HS and cystic acnes.

      This was my story, I hope this will help someone.

  24. Abby
    November 28, 2012 at 10:20 pm

    I am suffering from HS. I’ve done research and I can’t actually find a way to reduce the pain and swelling. I have it between my breasts. Its not as bad as pictures I’ve seen but I’m in so much pain! !! It makes me wince and want to cry. It wasn’t flared until I popped them. Now I can barely move or breathe. Iim not overweight. I thought it was just bad acne. I’ve had it for a couple years but I’m self conscious and the pain shoots all through my chest. Antibiotics and ointment doesn’t work for more than a week. Dermatologists haven’t helped. SOMEONE PLEASE HELP ME! :(

    • Christopher
      November 28, 2012 at 10:38 pm

      Have you tried the autoimmune protocol?

  25. Bridget
    January 21, 2013 at 7:53 pm

    Wow, thank you so much for your post. I have had hidradenitis suppurativa for about 5 years now and it has been horrible. Until I came across your blog, I thought I’d done EVERYTHING: the baths, the herbs, the antibiotics, taking birth control, major surgery, minor surgery, vitamins, exercise, etc. I would try this and that and STILL get the most painful cysts in the most embarrassing places. I actually had one lanced just YESTERDAY and the experience was added to my long list of painful and humiliating trips to an urgent care facility or dermatologist. I am desperate to try anything, and even though I love peppers and french fries, I know it is not worth the pain and embarrassment. Thank you again for the wealth of information, I can’t tell you how badly I want to rid myself of this disease.

  26. David
    January 23, 2013 at 10:21 am

    HS diet connection is for those with HS who use diet to help there HS. Its was created 3 years ago. It’s a private group so you have to ask to join. All are welcome. http://www.facebook.com/groups/hsandglutenfree/?bookmark_t=group

  27. Lindsay
    January 27, 2013 at 7:06 am

    caffeine could be one too…I stopped drinking coke one day (I used to be totally addicted) because someone told me of these weird bumps they got that went away after no more coffee. It worked almost immediately for me. I hardly get them, tho I am getting them more frequently now because of stress and I think my diet needs to improve. Anyway, caffeine could be one. My mom smoked and drank tons of coffee and she eventually developed breast and lung cancer (all these dependencies were from stress super early on in her life that she had no control over and was never really able to deal with)…not sure if there is a connection.

  28. Jel
    February 22, 2013 at 5:02 pm

    Waaaaaaa! How glad am I that I have stumbled across this!? Thanks for sharing your story. I’ve had HS for years but really had no idea what it was. It has not been all that bad as some of this pictures I’ve seen online…until recently, which has prompted me to do a bit of research on it.
    Been crying all night as I know my body is telling me that its time, there is no putting things off any more.
    Am going to ease myself into the paleo diet firstly by cutting out dairy, then the rest to follow. Wish me luck!
    Oh, and I just had my last cigarette…..I really gotta sink my teeth into something grrrr

  29. Al
    March 14, 2013 at 2:32 pm

    So timely…I was at the dermatologist this morning (3rd one) and she diagnosed HS. The pain associated with these is at times unbearable and I have actually called in sick to work as I could not wear a bra due to the pain/where the issue was this time. She suggested an Elimination Diet which I am off to search and looking at the various sites mentioned here. Thank you!

  30. Loren
    March 20, 2013 at 10:56 pm

    THANK YOU! I finally feel that there is something that can help. My heart goes out to every person that suffers from this. I am posting this as the parent of a child with HS. My son has had outbreaks since he was 9 years old. I took him to the doctor and got the ‘antibiotics / ointment / anti-
    bacterial soap/constant showers/diet/over-weight/loose clothing/cleanliness’ speech. Since I had never seen anything like it before, I did everything that the dr said. You can imagine my desperation when he kept getting bumps in the most uncomfortable places. That summer he went on vacation with his dad. When he picked him up, I gave him a paper with his daily morning/night routine. I had even packed a small bag with all his “supplies” in case he had an outbreak emergency. His dad was not surprised when he saw him and said, “It’s just a boil. I get them too.” Ugh.

    My son just turned 13. He still gets an occassional bump on his inner thigh but it is NOTHING like it was in the beginning. And then I remembered…puberty. I read that onset of HS is usually during puberty. Not sure what to expect with him since he got it at 9. So, now I am pretty much freaking out. I know that it is something that he will have to live with but I want to help him find a way to manage it. Going through puberty as a 5’8″ (and still growing) hormonal teenager is hard enough, don’t you agree? I want to eliminate things from his diet that could be a trigger. He is already sensitive about his weight so I will have to approach this delicately. If anyone has a suggestion or any additional information, please reply. I will keep you posted on his progress.

  31. King royalty
    April 6, 2013 at 8:17 pm

    We’re u sick to Ur stomach often as a child before way before u got Ur simtomes?

  32. Sydney
    April 30, 2013 at 4:40 pm

    Wow! I am almost 15 and have had HS for about 3 years but was diagnosed last summer. This was incredibly helpful and I am definatley going to try your advice. I am still young, and dealing with this for the rest of my life is not something I want to do. You are absolutley right that is hard, especially when young (pool parties, yeah right!) I want to wear tank tops and enjoy summer, so along with simply embracing it, might as well try to berid it.

    Thank you so much.

  33. Beth Gordon
    May 1, 2013 at 2:55 pm

    I suffered with H.S. for many years. I was so overcome with guilt and shame and hatred for my body that I had to hide.

    My Grandmother suggested trying compound sulfur. I went to a small family pharmacy and bought a bottle and it actually (I believe) has saved my life. I eat 1 spoon full daily and it keeps h.s. away. It tastes nasty but I could care less. I’ve used vit e also to help heal the scarring. It works very well.

    Good luck to all of you.

  34. marie
    May 7, 2013 at 6:48 am

    Hi Tara,
    A couple years ago I read in some blog about no dairy. I tried it and it has worked. I rarely have outbreaks and when I do it’s usually because I eat something from a restaurant that I am not aware has dairy in it. Once I got frustrated and ate a ton of pizza and then next couple weeks got so sick, couldn’t sit down and had to go on major antibiotics. I read somewhere that it has to do with the hormones in cheese, not the lactose. But i still eat meat and nuts and never have a problem. I have put a good splash in my tea before and notice that i start to get a bump, but then it will go away if i don’t touch it. So now I’m completely dairy free. You said the non-dairy didn’t hae an effect on you. Maybe we all react differently to different triggers, I don’t know. But maybe someone else could benefit from my experience as well. Good luck everyone :)

  35. Janet B.
    May 11, 2013 at 9:15 am

    I was doing some research this morning and came across your story, My husband..( age.58 has suffered with this disease for 17yrs..He has Stage 4.He has had 7 operations .1 successful..He is one yr and few weeks away from retirement.but he had to take a medical leave has things have gotten so much worse.Like his legs have all these sores on them for past 2yrs..but the DR’s cannot figure out what has caused them..and he is weak in the legs now.so he could no longer perform his job as he once did..On top of his disease he has High Blood pressure, Diabetic..and Now just recently is retaining approximently 20 to 30lbs of extra fluid on his body..I look very forward to reading up on the diet..Thanks again….Janet( his wife)

  36. T. Spence
    May 19, 2013 at 5:37 am

    Wow! It is so great to see so much more information about HS out now and seeing so many people coming forward having been a long time sufferer for over 25years now and tried just about everything too. Going to eliminate nightshades from my diet as I’ve tried the no sugar no dairy no fun diets and nothing has seemed to work. Thank you to everyone for having courage to come forward and talk about HS

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  38. Crystal
    June 14, 2013 at 2:04 pm

    I really enjoyed your blog. I have been suffering with this for over 10 years now and I find it extremely embarrasing, sometimes depressing and always painful. I I have to try something and if its comes down to changing my diet to the extreme… I may have to do that!

  39. ...
    June 19, 2013 at 2:21 pm

    Um…I understand everything about how hard this disease is, not personally though. I’m 14 years old and I do not suffer from Hidradenitis, but my sister does…
    It’s awful, and the family feels guilty for doing anything fun like swimming or even going outside because my sister can’t. Me and my father have honestly pulled all-nighters studying this disease. We have tried all kinds of medications, like every antibiotic possible, humira, and even a few cancer treatments to try and wipe out her disease. Nothing has worked. We recently started her on this Paleo diet thing, all we can do now is pray it helps which so far IT HASN’T! But I guess we will just have to wait and see. Your story is inspiring and you must be such a brave and amazing woman.
    My family really doesn’t know what else to try after this since her illness just keep increasing…

  40. Me, too.
    June 28, 2013 at 4:40 pm

    I did not know this was called HS, but I have had this for a little over two years now. What is strange is I also developed lactose intolerance. I don’t drink milk except with cereal on occasion. But I noticed a strong reaction to ice cream. I wonder if there is a connection.

    Anyhow, I have found homeopathic cell salts to work wonders. I used to have 4 or 5 at a time and they took forever to go away. And the first year, I had at least one at all times. Now if I start to feel one coming on, I take CalcSulph, 12x and FerrumPhos 12x two to three times per day. They usually do not come out fully and are gone within 2 or 3 days. I think it is the CalcSulph especially. I once had one with a black head on it for almost a year in my armpit. That is when I started the cell salts. Anyway, after 3 days of taking the CalcSulph, it fell right out and healed up completely.

    They are very inexpensive and worth every penny. I also find if I start to come down with a cold, if I take them right away, I can fight it off. I order a bottle of 500 from 1800homeopathy dot com.

    I hope that helps someone else.

  41. Beth
    June 29, 2013 at 8:06 pm

    Tara, I cannot express how glad I am that I stumbled across this website. I have suffeted silently for 12 years with HS, have consulted with numerous doctors, tried everything under the sun and I am brought to tears at just the thought of a brief monthly relief. Thank you for sharing, for giving others hope.

  42. SHAWN
    July 2, 2013 at 7:03 pm

    I dont know for sure if this it what I have. I am 30 and for the last couple years I have noticed that sometimes I have a bump or two under my armpits. The first time I had one i popped it after awhile and drier thicker pus came out and that was it. After that I would randomly get a bump but they would go away after a few days. Recently though i got kind of small bump and popped it and about 3 days later I noticed there is about 6 or 7 now. They are not really painfull just a little tender. The bumps have never opened up on there own. Im wondering maybe if Im in the first stage or something. What I have noticed is I seem to get the outbreaks after heavy heavy drinking which leads to heavy smoking. I dont know if its the drinking because it will happen from vodka and just not beer. So if I do have this I think its from chain smoking. Does it sound like I have the begining stages. Thanks if anyone has advice

  43. Megsie
    July 6, 2013 at 9:58 pm

    I have had hs for over thirty years. When I was younger it was scarring. I have been misdiagnosed repeatedly. Yes it has been embarrassing. Definitely allergic to nylon as I would always flare after wearing pantyhose or nylon tops. I haven’t had a cyst in my groin area for a few years and only one in my armpit for years and years, so you do grow out of it a bit at least I have found this out. It does get better but the scars are not good.

  44. Arcim p
    July 15, 2013 at 9:01 pm

    Thank you for this post! It’s nice to know I’m not alone in this HS nightmare. I’ve suffered with this disease for three years now, and was just recently diagnosed with HS. Upon reading everyone else’s symptoms, and personal struggles it all makes so much sense now! I hve personally dealt with outbreaks in both of my armpits and all around the groin. It’s personally humiliating and makes it hard to function in hot weather, be intimate with the person I love, and has even caused depression. I wake up everyday feeling disgusting and depressed because of these skin outbreaks that continue to occur on my skin. I have recieved oral and topical antibiotics, which will hopefully bring my condition into remission atleast. It’s hard knowing there isn’t a “cure” for this but hopefully something helps. If anyone has any good diet tips or wants to talk about their experience please email me – sugartolove@gmail.com It would be nice to talk to someone going through the same thing. Thank you!

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  46. Marissa
    July 30, 2013 at 8:29 am

    For 11 years now I have suffered with boils on my inner thighs and lower buttocks mostly. I have had them on my breast & waist as well. All these years I have been misdiagnosed over & over. Recently I started paying more attention to WHEN I get the boils. I pinned one thing in particular: Menstrual cycle. I have a history of pulmonary embolism so can’t have ANY hormones :( . Finally I know what this is, why I’m always tired, severely depressed, self-conscious, etc. thank you for putting this out here!!! I’m so tired of SEPTRA DS/BACTRIM DS I could scream! Thank you so much!!!

  47. Roopa
    July 31, 2013 at 8:45 am

    Hey, I am also having this HS. Please give me any good solution for this.

  48. Dilar
    August 21, 2013 at 5:04 pm

    in what way does medical cannabis help? Do you eat it?

  49. Brenda
    August 28, 2013 at 9:23 pm

    I have suffered with HS for more than thirty years. In addition to HS, I have had numerous bouts of alopecia – serious hair loss in perfectly round “crop circle” patterns. I believe both to be autoimmune. I believe smoking is a major aggravator in HS. HS has been especially socially physically and emotionally painful for the past few years. I have sores in the same place for 10 years – painful scar tissue with underlying fluid filled sores. Now in my fifties, these sores are ugly and become easily infected. What a drag this whole thing is and how tiring to constantly struggle to figure out the cause while trying to manage the symptoms every day. I strongly suggest smoking cessation as a first step.

  50. Kay
    August 31, 2013 at 5:33 am

    I got it in my teens and I’m now 56. I was getting lots of sores and then I went on birth control at 17 and they almost disappeared. I would get an occasional cyst but nothing that was out of control. Then, after years on the pill, I stopped taking it, and slowly my disease came back – first on my buttocks, then on my breasts and now I have them on my stomach, waist and down the legs.
    I was put on Enbrel for my Rheumatoid Arthritis at 45 and something amazing happened: my HS cleared up. I had NO cysts. I didn’t put two and two together that maybe the ENbrel was helping, until I had to go off Enbrel injections because I had a bad infection. (Enbrel lowers your immune system which is why it helps RA – an auto immune disease, so you must go off if you get an infection.) After about two weeks off of Enbrel, the HS was back with a VENGEANCE! This drug definitely gets rid of it for me, and I’ve heard there are other doctors trying it for HS too.
    I tried the no potato, no nightshades diet because there were people who believe it is the cause for Rheumatoid Arthritis, but it never helped me for either disease. I’m not saying it doesn’t help others, I’m sure it does. We are all different.
    For me, what works is Enbrel, keep my weight down, wear loose clothing. Heat is my enemy – If I work out and sweat a lot or sit for hours that makes heat and that produces a cyst for sure.
    If I’m going on a long trip, I use a cooling seat (attached to a cooler of ice that pumps cool liquid to the seat continuously) It makes sense to me that heat is involved because of where it attacks you, and because it helps if you lose weight. But don’t get me wrong, weight alone is NOT the problem, even though one doctor tried to convince me of that. I got them plenty when I was skinny.
    My theory is that somehow, heating up areas like armpits and groins (which are hotter anyway), brings an auto immune response, which starts another cyst. I think taking hormones (progestin and estrogen) shut down the problem in my system too.

  51. Megan
    September 13, 2013 at 4:25 pm

    I am 20 years old, and my doctor told me to lose weight and use Antibacterial soap. He lied and was a complete ass about it. My dermatologist prescribed me some pills and a body wash. That too did not work.

  52. Jenn
    September 19, 2013 at 9:50 am

    Robb and Tara: Thank you both SO MUCH for this article.

    Since my daughter was born (just over a year ago) I’ve diagnosed myself with HS, based on symptoms. Over the last year or so it’s gotten progressively worse… started out as two lumps in the groin area which would flare up for a week or so, then disappear for 3 weeks (flare-ups always coincided with my period starting). Over the past couple of months it’s more like 5-6 lumps which would flare up, stay that way for 3 WEEKS or so, then subside for a week before they’d flare up again. Unbearable…

    So needless to say I researched and researched and researched… figured out first of all what the problem was. Then I stumbled on this article, and pondered the paleo diet for a few weeks.

    A week ago I got my period again, and the lumps flared up bigtime. So I started the paleo diet. For 48 hours now, I have not consumed grains, processed foods, sugar, nightshades, or eggs. (Looking forward to adding those last two back in.) The lumps have shrunk to about 10% of the size they were two days ago, and I have NO… PAIN… AT ALL. They’re smaller than they’ve been in months (even during the “break period” between flare-ups, the lumps are still there… just smaller and less painful).

    I can’t believe this is working so well, and so QUICKLY… I was a skeptic even when I started the diet, but as you know when you live with this condition, it’s worth a shot! (Plus I figured if I drop a few pounds in the process, all is good.)

    Now I know the impact that these toxic foods have on the body. It’s incredible… all this time we’ve been told to eat certain quantities of grains every day for optimum health, and all this time they’ve been poison.

    I have no cravings for these foods anymore. I walk through the grocery store now and see cookies and pies and cakes and I feel like every box should have a warning label on it. I’ve been drinking black coffee for two days, which I never thought would be something I could do. I’ve even got my husband eating paleo (he’s pretty excited about it too), and I’m happy to have learned what I’ve learned, so I can raise my daughter with the best possible eating habits.

    Thank you for sharing your experiences and information; it has meant the world to me, and saved me from a whole lot of pain and suffering. =)

  53. TempestTcup
    September 24, 2013 at 1:05 pm

    I might be sensitive to nightshades, but I think it is the high copper amounts in potatoes that I am most sensitive to. I was silly enough to go on a potato diet ( http://freetheanimal.com/2012/11/the-potato-diet-hack-observations.html ) and had a very bad reaction (excessive menstrual bleeding for weeks due to copper toxicity leading to zinc deficiency). I took zinc and the bleeding stopped immediately.

    I should have learned my lesson, but then later started taking potato starch for the resistant starch (also at Free the Animal) and developed a HS bump (very mild) I wondered if it was also copper toxicity and found this which states that zinc salts are a new therapeutic approach to HS.: http://www.ncbi.nlm.nih.gov/pubmed/17460404

    I am cutting out copper in the forms of potatoes (never again) and now I’m going to replace coffee with green tea.

  54. Suzie
    September 25, 2013 at 8:08 am

    I had success in calming my HS when I did Atkins. But I go on and off it so it was hard to determine exactly what I was eating to cause flare ups. I thought it was sugar. I’m not a big fan of most of the food that are considered Nightshades except for potatoes so I’m going to eliminate all nightshades & hopefully I can get some relief. I have a major “alien” on my thigh right now that makes me want to cut a chunk out of my leg! (i won’t)

  55. Suzie
    September 25, 2013 at 7:06 pm

    I’d like to amend my comment awaiting moderation to say that I’m an idiot. I made salsa chicken for dinner… I was so focused on potatoes that I forgot about tomatoes! LOL

  56. maddy
    September 26, 2013 at 11:38 pm

    I have had HS since the age of 9, I also have PCOS, IBS and nerve damage in my right ear. Just recently visited an autoimmune specialist and he reckons that I have a rare staf germ present in my nose or the back of my mouth. Going to have the tests tomorrow and if he is right and i have a staf infection in my nose no form of oral antibiotics can subdue/get rid of the infection. The way the staf infection works is it develops in the nose and travels to the part of the body in which it is not resistant and attacks that area (under the arm, boobs, bum or in the thigh region). Therefore it can only be controlled by a topical cream inserted to the back of the nose which kills the staf germ. Food for thought.

  57. Angela
    October 4, 2013 at 6:54 am

    Has anyone here been successful w/ treatment of HS by following a gluten-free diet? If so, I’d like to hear your story, please email me at: shadowcat_410@yahoo.com

  58. Kadence
    October 7, 2013 at 4:17 pm

    Im 28yrs old.. I’ve been suffering from this disease for over 13 years. I’ve been on so many antibiotics/creams/ shampoos/diets. Nothing has seem to work. I have good months and I have bad months but I’ve been able to just pray about it and deal with it. I’ve learned that my triggers are usually caused by spicy foods. Whenever I have a outbreak I’ve learned that using Episom Salt will help it come to a head and burst much faster. But if you have a large one that will drain for a few days you may want to take a day off of work because the Episom salt works very quickly. I usually grab a ziplock bag and put a cup of Episom salt and half a cup of hot water in it then I soak a wash cloth in it for a few minutes. Then I put it and a heat pad under my arm or buttocks for 2-3 hrs. Usually with me it takes 2-3hrs after I remove it for it to work but when I start feeling a little sick and a heat wave comes over me I know the boil is getting ready to pop and then within a few minutes the boil starts to drain (the best feeling ever). I’m not sure if this will work for everyone but it has worked for me… It’s not a cure but it’s a great way to start the draining process. We all are going threw something so horrible but with chatrooms like this it can help us all get through this. God Bless each and everyone of you.

  59. jo
    October 13, 2013 at 4:33 pm

    Wowsers.
    Information overload.
    Like most I have suffered since puberty. For me this issue is so multi pronged that I don’t even know where to start. I was sexually abused as a child so at the time I believed the outbreaks were because I was ‘dirty’-i get them in groin/buttocks) I kept them hidden even as a child & suffered so much pain & the scarring was hideous. As an adult I have had surgeries for them, which for me, fixed that particular spot. When they opened the area they then packed it with a seaweed based dressing to prevent it healing over & making a pocket/sinus. They gradually reduced the amount of packing over a week & it healed well.
    For me being pregnant made the condition worse & now as a 40 yr old I have been in early menopause for the past 2 years & it seems the condition is waning. Except this week, another huge cyst has erupted, so as I am faced with going to docs today I googled it & found this forum.
    I am so relieved & I find myself thinking about the foods & have eaten this week & note an unusually high amount of diary . I have been hearing about paleo co dept for a while, seems destiny is leading me to it.
    Thanks for caring enough to share.

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  61. Reg
    October 20, 2013 at 9:29 pm

    Im 15 years old and I was diagnosticted of HS, the doctor medicate me with some pills and a cream but I have just a slighlty improve.
    I’m very glad to hear that I am not alone here and that everyone has got a metod to help themselves.
    i think im going to try the Paleo diet and look for my triggers.
    Im really desperated for trying to cure myself, as all my other friends enjoy having a pool party , Im the one who cant go or Im shy because they are probably going to notice.
    So im looking forward for a cure!
    Thanks for sharing this blog

  62. Suzie
    October 23, 2013 at 4:33 pm

    I was doing great avoiding all nightshades & everything was calming down. Had mashed potatoes last night and now my one under arm is KILLING me.

  63. Sienna
    October 24, 2013 at 7:03 pm

    Wow… I am speechless. I thought I was the only one fighting this quiet, painful, embarrassing, depressing disease. I am 31 and have been dealing with HS since puberty. I too have gotten the speech about loose clothing, washing, scrubbing, antibacterial soaps, and so on and so on and so on. I literally went to the dermatologist today in tears. It’s embarrassing and its even harder to deal with when the MD makes you feel dirty. Thankfully that was not the case today. I had a very compassionate doctor who finally gave me a name for this disease. I will say that I just recently started the advocare program and my flare ups have been less painful. There’s not a day that’s gone by in the past 18 years that I haven’t had a cyst, nodule, pimple, spot, blemish or scar. Advocare is similar to the paleo diet but with additives. Once I am finished with this 2 weeks I will begin paleo and see what it does. I’m willing to do anything. I do smoke but I’m not as convinced that its a trigger because I’ve quit (while pregnant and breast feeding) and I was actually more miserable. Also, I didn’t start smoking until I was 18. But it never hurts to try all options. All I can say is thank you for writing this article. I wish everyone the best of luck in their cures & remedies.

  64. Jessika
    October 26, 2013 at 5:51 am

    Hi, I started in Stage 4 or the chronic stage. My first surgery was major, all of my private area had to be remove and grow all new skin (12 day hospital stay) then a nurse to change packings which was Nov.4,2004. 7mths later my nottom area and few days in hospital. It’s been 10yrs since first surgery and I had surgery #11 in Oct.2012. I deal with them for the most part but the stubborn lesions that have a mind of their own will appeaf and give me hell. I wake up to them sometimes and can’t hardly walk then there are some that come & go without the extra drainage & smell. Right now I have some bad ones that have been draining for two months & finally got to see the doctor but have to go back Wed. to see if they are drying up. The tracks under the skin may need to ne removed because that’s how they keep draining. It was soooo depressing because the HS became my lifestyle and I am better with it now because I learned to not worry about things you can’t control. My self confidence has been an isdue so I don’t go around lots of people other than the few that are really close & know what’s goin on. I don’t tell people about this but I see that HS has affected more people than I imagined. Keep your heads up & know this is nothing you did wrong. I sooth mine by soaking in the warmest water, the depo shot also helps lower estrogen and trying to stay dry throughout the day is hard to do especially in summer but hey wjatever works for you. I’m glad I could share this with you all.

  65. Chelsie
    October 29, 2013 at 10:55 pm

    Hi I’ve lived with HS for 17yrs now (i’m 27) I only found out what it was about 4 yrs ago. When I switched to a vegetarian diet about 10 yrs ago I noticed a big change in my skin. but it wasn’t till I cut out dairy and gluten this year that I noticed my outbreaks got few and far between. I still get 1 or 2 here and there, but nothing like it was. I’ve gotten them mostly under the breasts, butt, back of the legs, above the pubic area, and the groin. I will research what’s in the nightshade family, I’ve never heard of that before. I hope to permanently clear this up and help my sister and brother who also have this as well.

  66. Tj
    November 20, 2013 at 9:53 pm

    I promised myself that if it worked, I would come back and post a comment THANKING YOU SO MUCH for sharing your story. Thank you, thank you, thank you.

    My background: I was recently diagnosed with HS (31 years old), but I’ve had symptoms since my mid-20′s. Due to lack of insurance and burying my head in the ground shame, I only went to the doctor for cysts periodically, with the reoccurring cyst on my neck occassionally treated by draining and steroid injections. For that cyst and other cysts, I was told by doctors that “sometimes these just happen” or “these happen with weight.” At the time, I was significantly overweight, so I definitely blamed myself for these skin problems, which made me want to ignore the issue and hide from doctors even more. I finally got insurance at the age of 29 and went to the doctor for my neck (which was severely inflamed) and was referred on to a dermatologist. I promptly had two surgeries on my neck to remove the infected track of skin (from the reoccurring and untreated cysts). It was right around that point in time that I had lost and was losing a significant amount of weight. In losing weight, my cysts did decrease in severity, but I still got cysts (in very uncomfortable and embarrassing places) a few times a year. Additionally, my skin was often irritated in the areas in which I would get cysts. It actually ended up being my gynecologist who correctly diagnosed me and who told me that additional weight loss would probably help, but that it was ultimately a ‘genetic condition’, one that she could put me treat by putting me on acne medication for the rest of my life.

    Well, armed with the correct diagnosis, I went a-googling and thank God I found this link and your blog. I set about doing a autoimmune protocol whole30 at the start of the next month, cutting out nightshades, grains, dairy, nuts, seeds, sugar, alcohol, legumes, and eggs. I want everyone to know that my skin DID get worse before it got better. And I needed LONGER than the 30 days to see a change. I ended up taking out nightshades for three months (as I needed that long for my skin to calm and be cyst-free) and introduced nightshades back in one at a time. I gorged myself on tomatoes and got a cyst the very next day. I cried I was so happy. I waited for my skin to calm before introducing the other nightshades (with the exception of eggplant, which I still need to do) and found that none have given me cysts, but have affected me in other ways (potatoes puffed my face and by the end of the day made me nauseous; and spices/peppers gave me super phlem – like the kind that sticks in your throat for a half an hour and won’t come out).

    I’m still tracking my progress as it seems too good to be true. There was (and still is) a lot of self-doubt in the process – (e.g. “my skin is tingling, which normally happens before I get a cyst – what is it that I ate???”), but I am more than happy to cut out nightshades from my life if it means no more cysts.

    Again, thank you SO INCREDIBLY MUCH for being so brave and so amazing and so awesome as to share your story. It made a difference in my life. You made a difference in my life. Thank you.

  67. Leonie
    November 21, 2013 at 2:52 am

    After seeing different doctors for years with no help I ended up diagnosing myself. Printed out all the info I could and took it to my doctor who replied “oh yes, I think you have this”. She put me antibiotics and after 5 years on them there was really no relief, so I stopped taking them.
    I ended having to go on the pill due to heavy mensies, DIANE 35. It helped, it helped so much I had not one cyst. The downfall was the weigh gain, so I stopped taking the pill. 4 weeks later, I now have them back! I myself don’t really eat any nightshade things so I think it may be hormonal for me.

    Anyways, for any female who hasn’t yet tried DIANE 35, you should. You can only try. And if it doesn’t work, try the next thing. Process of elimination.

    I get mine in and around my privates. So to go from having 11 large ones and not being able to walk to none at all was a dream come true thanks to that pill.

  68. Barbara
    November 29, 2013 at 5:11 am

    Keeping my story short…. Went to about 20 doctors over many years before one actually diagnosed problem as HS; have had two surgeries on my inner thigh area. (One began tiny then grew until surgery required 22 staples to close; the other was so deep I was on heat lamps and a mesh material for deep wounds to help it heal from inside out. Anyway, I’m going on 60 and for the first time started breaking out under arms and along the band of my slacks with the strange bumps described above.

    I’ve been connected to another health site discussing Alfafa pills to help keep your body more balanced and alkaline instead of acidic. This got me to thinking maybe acid had something to do with these bumps. Lemons are alkaline (not acidic) so I started drinking lemon water for about 3 days and could almost immediately tell a difference!! After I got better I quit the lemon water, then went back to my ‘bad’ eating habits and the bumps came back. I then found this site and learned about night-shades. Turns out I have been eating a lot of French fries. This got me to thinking about the alkaline/acid thing again. So….more research. I found out most of what I’d been eating for the past few weeks is acidic foods!!! I’m now balancing my diet with alkaline foods and the bumps are clearing up again!

    I hope this helps someone. It’s just my own research but maybe there’s something to it. A good article I found online is called “Is Your Body Too Acidic” by Mark A. Stengler, NMD.

  69. Barbara
    November 29, 2013 at 5:20 am

    P.S. It was through Hidradenitis Suppurativa search that I found this site. I’ve not heard of the Paleo Diet before but am interested in knowing so I’ll research that too. Thanks!

  70. Marina
    February 17, 2014 at 8:41 pm

    I have been suffering with the worst of this for so long now, I can’t remember how old I was when I had my first outbreak. On top of HS, I also have mild Chron’s and gastritis, to which my doctor claims I can only take medicine and there are no life changes which would affect this. Reading this entry has my mind racing with ideas of wonder and hope. This seems extremely hard since I have never really limited myself with the types of food I eat, as long as it’s in portions, but the fact that you suffered so long and 1 thing made such a huge difference gives me faith. I’m in my mid 20s and tired of avoiding my friends and potential relationships. If doing this can put my HS into remission, then it would absolutely be worth it. I’m Eastern European, so we definitely eat a lot of potatoes, but I’m going to try this and be positive. Thank you so much for sharing!

  71. jess
    March 5, 2014 at 11:31 pm

    Haven’t done a search on HS for a while, but so glad I found this tonight. I am 40, haved lived with HS since 13…I didn’t even seek help or tell anyone until I was 28 or so. I was much too embarrassed, I managed to work around it in romantic relationships. It’s contributed to my mood disorder greatly.
    In 2009, my HS finally got so dibilitating I had two full underarm excisions, and abdominal excision from hip to hip, and cysts from both breasts. Now, I look like I was mauled by a cougar.
    No cysts have returned in the surgery areas but they have returned on my breasts. I just started drinking milk after along break so I do think dairy is one of my triggers.
    This is a horrible disease. I have attempted suicide due to my severe depression. Scars everywhere. Being a single woman…dating is pretty much out of the question.
    Much luck to each of you.

    • Tina
      April 10, 2014 at 6:44 pm

      Jess, please try Tumeric capsules and AZO yeast tablets. You can find both at Walmart. There is a wash called Hilbicens that you can purchase to help with the odor if cyst are under your arms. But use it to wash all infected areas. Everything can be bought at Walmart. If you have a cyst that’s stubborn and won’t drain then use Prid drawing salve(Walmart too). Once it bursts, use Neosporin to help it heal. Good luck to you, and there is a solution to every problem. Don’t give up…Check your diet as well. Many believe that HS is linked to candida and yeast overgrowth.

  72. Kimberly A Mitchell
    March 16, 2014 at 8:44 pm

    kim360215@yahoo.comver 20 years. I am so thankful that I found this post I am going to try and find out what my triggers are. There has been time’s that my flare up have been so bad that I had thought about cutting my arm off it was so bad. I have ended up with celulitetis four times and now it seems to be getting worse as I get older. So I will be try this for sure thank you.

  73. cynthia
    April 17, 2014 at 5:28 am

    Same thing with the condition I have. But mine can’t be hidden to anyone since its all over my face. My face will turn red and stays that way for a very long time.

    The treatment is all about diet still. Hope you get well.

  74. Lula
    April 28, 2014 at 10:48 pm

    I am so thankful I found this site near the end of 2013. I’d been suffering from HS for 4 years although I didn’t have a name for it until the spring of 2013. I did the rounds of antibiotics, washing with special soaps, etc and nothing helped. I finally had enough in the fall and started earnestly looking for a cure beyond taking doxycycline everyday–especially after the labwork on the fluids in the abscesses were coming back 100% clean. Something else had to be at play here. I found your site and the primalgirl site. I decided to do a modified version of Robb’s AI protocol. I decided to continue eating as I had been for the past 40 years, but I would eliminate one food at a time. I started with gluten. 4 weeks into being gluten free I had 3 flares with only 1 lesion at a time–a huge improvement. Then another 4 weeks with no flares. 1 single flare occurred after eating a dessert that I had scraped the crumble topping off of. Then nothing for weeks. I decided to try to re-introduce gluten 1 meal a day. 1st night spaghetti–everything is good overnight and all the next day. 2nd night hamburgers–the bun was heavenly! Skin in affected area is a little tingly the next morning, but no abscesses! 3rd night pizza from my favorite pizzeria. By morning I had 1 abscess, by evening 2 and by next morning more were appearing. That did it–gluten was definitely my trigger and has to be avoided at all costs. The pain and suffering just isn’t worth it.

    So thank you Robb and primalgirl for your advice and for posting it on the internet to help others. For those still suffering…there is hope! Just keep up the trial and error until you find your trigger and then eliminate it.

  75. Shay
    May 2, 2014 at 7:30 am

    Im very happy to have found this website and know I’m not alone. I’m not really sure where to begin, I want to try an elimination process, but not sure how to start since I eat several different foods. I have had HS for about 10 years or so now and basically diagnosed myself before a doctor did, but they did. I have tried many antibiotics and creams and washes and to no avail. Still get them, not as much and they do run their course a lot faster now, but I want real results, I want them gone. I had gestational diabetes when I was pregnant with my son and had to watch my carbs and I could see somewhat of a difference, however I went back to eating like I wanted to because the diabetes was gone as soon as I had my son. I cut carbs again to lose a few pounds and viola! Another difference. Not gone, but helped, so I guess I will try this paleo diet and cut the nightshades which I eat most of and I smoke, so guess what? I’m gonna have to eliminate that as well, but for more reasons than just this, it’s a nasty habit, I’m 28, it’s time to start taking control of my body instead of my body taking control of me, gotta start getting results and seeing a change in this disease, because when my underarm is inflamed and I can barely hold my son it just breaks my heart, thankfully I have the best husband ever who has supported me through all of this and still finds me beautiful even with all the scars they leave behind. I pray that each and everyone of you get results and relief, God please heal all of us who are suffering from this debilitating disease, by His stripes we are healed, AMEN!!!!! And God bless.

  76. Missy
    May 22, 2014 at 11:18 am

    I have suffered for a few years now. But I can remember getting the occasional boil on my bum as far back as 20 years ago. I’m 41 now. Just in the past 2 years I would say Ive progressed to stage 2. I have been in and out of denial that I actually have this disease. The more I read, the more I cannot deny it any more. I have become obsessed with reading anything I can find about HS. I just finished reading Tara’s The Hidden Plague. I couldn’t put it down. I have bookmarked soo many websites, and blogs to read.
    I have given up gluten, sugar, and nightshades for a week now. The pain and swelling went down almost immediately within a day or two. I have still eaten rice occasionally, some walnuts, beans and some dairy. I have gotten a coulple of new bumps. They are small and mildly painful. So I’m not sure. I guess I need to bite the bullet and go totally AIP. Before I start adding foods back in. So I can pinpoint my triggers. I also have not eaten corn. I was told by a naturopathic doctor a while back that I had a corn sensitivity and that had nothing to do with HS because I did not even mention my HS to her. But my last big flair up was after eating popcorn, corn tortillas and a tomato sauce based soup. So who knows. I am determined to get this under control. It is very hard to give up foods. I am also about 90 pounds over weight. I get depressed and angry. I have a husband and 2 teenage boys that continue to eat the things I love. I’m grateful that I’m not alone in this. It helps to know that you all are here and understand.

  77. Tricia
    July 16, 2014 at 8:38 pm

    I’ve have HS for over 2 decades. It wasn’t until last year that I was finally diagnosed properly. It’s been a huge burden I’ve bared, and thought I was dirty, and cursed.
    I’m grateful I’ve got the support of my folks, but I haven’t allowed anyone get close to me physically because I was modified my outbreaks, and scarring.
    I’m grateful that you spoke up, because it’s nice to know I’m not alone.

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