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
How awesome that Paleo is fixing all these autoimmune disorders that conventional medicine has no clue about!
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…..
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.
I was diagnosed with this recently. There is a chance my trigger is smoking instead of food, unless you can develop a food trigger for this condition. I am curious to know what you tried & what your results were. Thanks
Tobacco is a nightshade and nightshades promote inflammation. By eliminating nightshades in my diet entirely, I have been in remission for 4 years. I’ve had this horrible disease for about 16 years.
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
Read the article and follow the diet, that should help.
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.
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.
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!
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.
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.
Our immune system is in our gut, if the foods we eat (processed junk) are not good for us, it will start breaking our bodies down, we really are what we eat and All this fast food and processed sugars are killing us and our children. Diet change will help, but u have to s stick with it to see results. 🙁
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 [email protected]
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.
have you seen any results since cuttingback on nightshades?
Ive had HS since i was 12, im now 31. antibiotics worked at first but after a few years were completely useless. my flareups werent that bad until i got pregnant with my 3rd child two years ago. then i was suddenly COVERED in sores, every move i made was painful, sitting, walking, sleeping, it was a nightmare. I started eating nightshade free about 3 weeks after hearing someone mention a possibly connection in an HS blog i was reading. After only 2 days i saw a difference and after 3 weeks my skin looks probably a good 50% better. I havent had a single new flareup and my scars are beginning to heal. Ive had no pain whatsoever and tho my skin now looks to be covered in little bruises (which are the scars) its SOOOO much better than the huge bright red inflamed lumps i had all over me before. Ill never eat another nightshade again and i really wish i would have found this treatment sooner.
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.
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.
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
I stared getting HS at 23, but 25 I had countless trips to the doctor where he lanced, packed, and tested the boils. He sent me to an OBGYN, she said I have HS and sent me to another doctor who confirmed. Then that doctor was a sergion. She said three cuts about two inches long and I would be cured. She cut both sides of my groin, buttocks entirely, a V completely changing my vagina, and twice in an armpit. It took a month to heal and hundreds of stitches. She refused me antibiotics and I had to beg an ER doctor, who treated me like trash. Now my HS has consumed my life. I can barely walk at times. I believe this to be an autoimmune disorder. I have tried everything, but not the Paleo diet and nightshade deal. I will try. I have tried no sugar, no dairy, and gluten free they did nothing. I already don’t each much for processed food, because I cook so good from scratch. Also as to the CBD deal, I’m trying it now, so still awaiting results. Thanks for this info
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.
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.
Keep us posted!
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.
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.
Can you tell me what the name of the cannabis is and where I can buy it?
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!
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
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
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
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.
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!
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.
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?
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
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. 🙂
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
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! !!
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
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
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.
I’ve had HS for over 30+ years and I have learned by trial and error which triggers that cause HS outbreaks for me. They seem to be carb related, and anything with caffeine and also hormonal fluctuations. Chocolate is the worst. I can literally feel a cyst growing with an drop of chocolate. Caffeine is also a bad one and any combination of high sugar combined with butter/fat can cause a cyst to form within hours. If I keep these triggers in check, I can live a HS free life. Also hormones seem to play a role in flare ups ( pregnancy, stopping birth control pills). I also try to eat as little processed food as possible. Hope this helps someone else. Try giving up chocolate and caffeine for 2 weeks, what have u got to loose (besides your sanity lol)?
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! 🙁
Have you tried the autoimmune protocol?
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.
Keep us posted.
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
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.
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
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!
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.
We’re u sick to Ur stomach often as a child before way before u got Ur simtomes?
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.
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.
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 🙂
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)
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
of course like your web-site but you need to take
a look at the spelling on quite a few of your posts. Several of them are rife with spelling
problems and I find it very bothersome to tell the reality nevertheless
I will definitely come again again.
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!
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…
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.
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.
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
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.
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 – [email protected] It would be nice to talk to someone going through the same thing. Thank you!
The mechanics of this invention allows to create a
triple emulsion that creates an unusually stable matrix into
which nutrient compounds can be fed. Vitamin C has recently been found to inhibit
melanin, meaning that it works to keep your skin lighter.
Accepting that you must pace yourself can be very difficult especially
when you have a family to look after, as you may not always have the choice to sit down and rest.
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!!!
Hey, I am also having this HS. Please give me any good solution for this.
in what way does medical cannabis help? Do you eat it?
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.
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.
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.
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. =)
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.
Wacky! Keep us posted.
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)
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
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.
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: [email protected]
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.
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.
juliet from london.
i got my two children through the support of prince EKPEN who single handly helped .i cried to him on his email :[email protected],he gave me all the neccessary support that brought back my joy and happiness in life.he is indeed a real man of great support in my time.i am glad to know him on the appreciate time.i beserch you brethren to earn your problem to [email protected] ,stay in united kingdom of ameriaca.
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
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.
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.
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.
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.
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.
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.
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.
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!
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!
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.
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.
[email protected] 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.
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.
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.
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.
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.
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.
I have HS Stage IV, PCOS and Fibromyalgia.
It is so hard. I have a wonderful husband and two kids. I am the breadwinner of the family and my husband does more of the work around the house. We came up with this plan due to my health. I can work (I work from home, in pjs 🙂 and then my hubs can focus more on the work around the house that is too hard for me. I haven’t tried Paleo yet, but am just about ready to start. I can’t stand living like this any more. I want my active life back. Thank you all for sharing your stories!
Give it a shot, I do not think you will regret it. Keep us posted.
have had this for about 20 years and am now at stage 4, I get the same from my Dr, antibiotics and topical lotion, I was eventually referred to the hospital but of course when the appointment came I didn’t have a breakout to show him and the scarring wasn’t that bad then, I did ask my Dr in April could she not give me an antibiotic & anti-inflammatory cream which is better that the topical lotion, why am I having to tell the dr what to give me?? I keep reading in different websites about nightshades so I decided to quit smoking 2 weeks ago but within three days of quitting I had three boils, obviously due to the stress, just feel like I cant win no matter what I do, am going to try cutting out potatoes’ tomato’s and peppers but after what I went through last week am keeping the cigarettes, this really is a horrible thing to live with I am now 37 and have been single for 14 years because of the embarrassment of it, I really feel for all of you, there isn’t even anyone to talk to about it because people just think its a few spots how can that get u down, people just don’t understand unless they are experiencing it,worst question I ever get asked is “how come ur single” I have to say things like I am happy on my own cant really say cos I look like a freak when I take my clothes off! anyway I hope you all find some relief and learn to live with it good luck to you all xx
I’ve looked everywhere and I can’t find anyone who ever heard of compound sulfur…can you give me the name of that pharmacy,or how I can find it. Im in north Carolina..
I also have HS and i been having it since my teen days i am 28 now but it has gotten worse were i cant move my arms so painful were i cant sit or stand and it does feel like something is moving but i just don’t know what that is.. i went to many doctors and specialists they consider surgery i thought surgery was the best but then it became much worse i feel broken ,, i hate having HS and i wish no one should suffer from this because it is very painful way to painful. i have open wounds and they don’t heal because HS keeps messing with my wounds once i feel like its heal it starts all over again and it sucks you feel depress and angry to have this HS i wish i never had it but having a positive mind and look for the right things for your body i believe i can change my diet and change what i need to see if it helps i don’t care how but i want to do anything to change in order to get better.
I too have HS going on 7 years or so now since I’ve first got my first large inflammation. Over the years these have become very large and have broken and now most of my underarm skin is very raw and a constant open wound. Through out the years I’ve been unable to hold a job and in the state I am in, now living back at my parents I can not get on any Welfare or SS or Disability because of HS which seems odd. I’ve also been to many doctors and have come to the conclusion the majority of doctors are not as intelligent as I had once thought and most really have no business in the field and I don’t base that on just my HS disease treatments but a great deal of many factors. So being this is the case I researched hard and found a great deal of people have flare-ups based on their diet and that certain foods mention in this article triggers an HS flare, but removing this is not the cure. Yes it does help a very small percentage of people and may even disappear for a long time on an even few amount of people but do not think that a change in diet will cure it. But it will certainly make it less painful and fewer flare-ups. I believe a cure can be found and had really cheaply if more people speak up about it and if medical researches have enough funding to go about it. I do believe it has very much to do with the autoimmune system but we need to know where it came from in the first place to truly be able to cure it. I suspect it might be many things that have raised this beast and I would not be surprised if the Western Food Industry is the cause along with uneducated or shady people at the FDA and other organizations that approve many western food ingredients and such. Also before I forget try to avoid Gluten of course as this too will help keep flares down. At this time I’m currently thinking about suicide because I financially can not afford to live and the pain of even moving along with the depression is tipping me towards a quick and hopefully painless death. So I encourage others to speak up that suffer from it and even get in your doctor’s face about it and questions their intelligence and abilities to be anything other than a pill dispenser, then question their compassion. Our medical industry and our food industry is as corrupt as our government but if we get loud enough I suspect then maybe Hidradenitis suppurativa will finally get some research and a cure.
I’m also curious how long it took some of you heal after you changed your diet and bad habits? I ask because I quit smoking 7 months ago and avoid any nightshades, gluten and diary products when I can. I say CAN because these things are used in many foods we are unaware of and especially in processed foods and such which is generally the menu for people in poverty or with little income.
Sincerely
– Wolfgang
Adding to a post I forgot to mention that many people believe it’s not contagious and I would not say that or go that far. Just like anything it can be contagious. Maybe not to a healthy person with a good immune system and maybe not by many traditional ways but I do suspect it can be contagious. I’ve heard all the arguments and such and believe it can be passed to offspring and passed onto others under the right circumstances. Just like any infection, disease or virus which there have been no real hard evidence to my knowledge that anyone knows exactly what HS is and if it’s even a disease but that is what we call it right now. No one can say if it’s truly contagious until we know exactly what it is and what causes it. I have my suspicions but when we know then it will a quick and simple cure at that point. So let doctors who tell you this know that you know they must have skipped that day at med school when contagions were the topics.
If tabaco does make HS worse then what about people who dont or never have smoked before but still have HS??? I think that is also a question that needs some attention?
I have been suffering from this disease for about 7 years. I’ve seen countless doctors from PCP to GYN to dermatology and I always pretty much had no luck. I have tried numerous things from topical’s, months of antibiotics, herbs, antibacterial washes and even laser hair removal. Hundreds and hundreds of dollars have been wasted and its extremely depressing. Is there any hope? My next plan is to try alternative medicine and the paleo diet. If anybody has tried something that has made a HUGE difference for them PLEASE email me… I’m willing to try anything to have my life back. I live in Atlanta, Ga and my email is [email protected]
To answer Melissa’s question on tobacco–tobacco is a nightshade. If nightshades are your trigger, your HS will continue until you remove them completely from your diet and stop smoking. HS is the result of your body triggering an autoimmune response to something you’ve taken into your body.
Dominique- I feel your pain..been there & done all that. Try the paleo or AI protocol diet (or at least a version of it) ASAP. You won’t know til you try. My story is listed above and I am so thankful I found Rob and primal girl’s sites. Good luck to you!
Wolfgang- If you don’t eliminate the trigger you won’t get relief. If going completely primal or doing the entire AI diet protocol at once is too taxing/expensive then try just doing a modified AI protocol and eliminate 1 thing at a time. Nightshades & gluten seem to be the main triggers I’ve seen for HS on various sites. I would start there & eliminate 1 at a time. Eating gluten/nightshade/dairy free only gets expensive when you try to replace your gluten/nightshade/dairy-filled foods with their gluten/nightshade/dairy free alternatives. Other than that, your grocery bill may go down because you’re not piling in all those processed foods anymore. In the end once you find your trigger, you learn a new way to shop & a new way to cook. Its hard to relearn to do these things and it takes time, but its well worth it. Good luck!
Eat raisins….As many as you can stand
Pepsi is a big trigger and I have heard others say the same thing about dark sodas like colas. I had flare-ups for years and quit drinking colas and it went away. Now I am drinking colas again and guess what? It is back. So I know I have to quit the colas, but it is hard as they are addicting, but I have to do it because the pain is too much to bear.
I all! Wow … I am finally glad to know that I am not the only one out there with this horrible condition!! I have not been diagnosed yet … but based on all your posts … pictures of the HS I am heading back to my primary doctor ASAP!!! The pain I go thru is horrible. The blemishes started on my left side which I always thought was soo weird! Never had it on my right .. my left armpit looks like a bomb exploded. Now I’m starting to get it on my right armpit and don’t get me started under the breast area. I am a smoker and I love my Potatoes and Sunflower Seeds. I definitely need to figure out my triggers so I can try and get this under control!!! They are ugly and basically looking in the mirror undressed makes me want to cry because I am just consumed with them!!! I am so happy I found this page!!!!
My friend 20 years old and she is suffering from it, it started 5 months back,she gets it every month when her menses ends,so would this thing work for her? She’s very much depressed. Plus she have got scars on her armpits,stomach , private parts. Question is Would this thing help her??? Plz reply if anyone is having same kind of thing and if u know hw to stop it
Give it a shot, and check out her book too http://www.amazon.com/The-Hidden-Plague-Hidradenitis-Suppurativa/dp/1939563011
Am 28 from Finland, don’t smoke, normal weight. HS diagnosed last year. I had had pimples in my groin area from time to time ever since I was 15, but they came and went pretty easily so didn’t pay a lot of attention to it at the time. I stopped taking pills 2 yrs ago and had first difficult zyst a couple of months after that. It healed in about a week… The pimples came and went again until Feb 2014, when I got another difficult zyst and the wound infected and I had to get antibiotics. Problem solved at the time, until last autumn I got another zyst in my groin area and it’s still there. It’s been there now for 4-5 months, at times better but now for the last 6-8weeks the wound has been open. I had antibiotics again for 2 weeks but once I stopped them the wound would open again… I have nooooo idea what to do with it. AIP I started a week ago, and no new pimples/zyst/flares since then, but I’m really helpless with the wound that just won’t heal!! It’s again in the groin area which makes it impossible to heal… this basically locks me home with no pants on lol.
I put my hope on the AIP. For me it seems logic: 1) we have autoimmune diseases in my family (coealic disease, psoriasis, thyroid) so guess this is my burden from the AI selection 2) I’m starting to think that stopping the pills might have made hormonal change and/or caused leaky gut 3) now I wish that finding and eliminating the trigger helps. Will report after some months what has happened. Wish everyone with HS a good luck!
I’d like to share some of my experiences, now that I have followed strict AIP diet for 30 days and after that started introducing foods back in (day 20 now or so). As said, when I started the AIP I had a couple of zits/boils in my other groin and one open wound in the other. The wound took about 3 weeks to heal with antibiotics and is fine now. The other boils started healing immediately after starting and after just 10 days they had settled down and disappeared. After this, I had no new zits or flares in my groin area for the time that I followed the AIP. Amazing!
Well, at least not until I started adding foods back. First off was eggs, which caused no boils but caused tummy ache so haven’t eaten them since. Next one was raw chocolate… which caused a major boil – bigger than ever! All my previous boils have been about the size of a pea but this was the size of half of my thumb! The reaction came in about 24hrs and was so absolutely clear. I feel relieved and gutted at the same time – it’s wonderful to know what causes the boils but then again, I’ve always been a chocoholic so this is a serious loss for me 😀
Next one was rice, which was fine. Next step for me is probably milk. After chocolate I had to wait for over a week to get rid of the boil, that’s why it’s taken a bit longer for me with the introduction process.
I followed the AIP very strictly apart from two glasses of white wine at a friend’s party on the 14th day of the diet. After the party I came home and had a shower where I noticed a small zit in my armpit that hadn’t been there prior to the party, about 4-5hrs before. The zits in my armpit have always been easier than those in my groin area, so I didn’t worry that much, just squeezed it and it healed. Now the funny thing is, last Saturday I had a couple of glasses of red wine, and guess what? Another zit in my armpit. Unbelievable! Could it possibly be that different kinds of foods/drinks affect different places?
So for me, it’s chocolate that causes HS. There could be more triggers, and I’m determined to test all the food groups out. Side effects, apart from putting HS into remission? I’ve lost 6kgs and the skin on my face has never looked better. I recommend AIP or regular Paleo to anyone with any kind of skin issues, from the bottom of my heart.
I’ll definitely be coming back telling how the rest of my journey goes. I know what it is to suffer with this and if anyone gets any courage, strength, inspiration from my story, I consider my job done.
I have had HS for 10 years and it only tends to get better in arid cold climates. I recently had been on accuttane due to acne issues and that has helped my HS because it changes the amount of oil produced in all of my glands. With a stringent prescription of the Accuttane I have been hs free for 5 months. Just an idea to ask your Dermatologist about.
I’ve suffered with HS since my pre-teen years. Over the course of my life I have been paleo, vegan, no carb, low carb, no dairy etc… and while with very clean diets I saw SOME improvement- I have never been in remission. After I had my son, my HS spread from my groin & under arm area to under my breasts- this was the last straw for me! I felt like i needed to salvage SOME part of my body that I still liked, that wasn’t covered in scars.
I began my research… first I have up gluten, I don’t smoke (3 years now) and was working out regularly. I saw SOME improvement. Then I saw primal girl’s blog post about the night shades. This made a big difference. Eggplant! Potato! Tomato… my favs! I’ve eliminated them from my diet. The occasional pepper or paprika still sneak in though. Little to no sugar.
I’m usually clear, but hormones and stress and well as food contamination keep me at about 1 flare up every 6 weeks, but they heal in a few days.
I’m still hopeful for a cure- because having a family- it’s so hard to eat like this forever.
This is the biggest scam I have ever seen., Karma will get you.
What would make you say this is a scam? Are these dozens of people suffering from HS trying to sell you something? It seems strange that you are the only one to say anything negative and yet you used 0 supporting evidence or reasoning for your post. I pray something here helps.
I am so sick of feeling like a pariah when I go to see my dermatologist and having some little girl 125lbs (same weight I was when I got HS) acting like the reason I have it is because I am fat and dirty. I got this condition at age 20 and I weighed 125lbs but just went through the death of my immediate family at age 19. I lived in Florida where pool/beaching is a way of life (I highly #$%&ing doubt I was dirty)
I have to believe the cause of HS is linked to either something bad I introduce into my body (like smoking or contaminants) and stress. Another plausible cause is hereditary issues which are lost to me as my family is lost to me.
Please pm me if you have tried compound sulpher to treat HS. I urge you to pm me regarding anything you feel is concrete to treat HS.
We all seem to agree that the lifelong treatments that our dermatologists are pushing-as well as the uncaring attitude- are futile and only treats the symptoms of my problem. Its like they want to give me drugs to minimize the sting when i rip off a band-aid… I would prefer they figure out what caused me to use a band-aid in the first place and make it stop. I would prefer doctors stop using me as a scapegoat to feed their own inflated egos when they do not actually know why this is happening to me.
The worst abscess is what I imagined giving birth would be (if I had not inexplicably miscarried) only instead of trying to push a watermelon out a hole big enough for a baseball HS is like trying to push half a baseball out of your body through no hole at all and basically it has to make its own hole to get out. If anybody wants to know what this HS condition is like, see above.
I used to be in the restaurant business but now I smell like an open would and thats sort of frowned upon in the front of the house. I wish I had any idea how to survive on my own or what to do for income now… I bounce from place to place hoping someone or other can take care of me while I form a SSD case but after another half a year of jumping through dermatologists’ flaming hoops they simply blame me for this condition. I have zero confidence they will assist me in any way (even to survive) as they aren’t helping a bit now. Perhaps another 4 months of antibiotics will stop the problem after 6 months of taking them now to no avail.
Honestly I think doctors make too much money off of us to ever cure this. Its the perfect crime to pillage thousands from medicaid, never help anyone, and when the treatments they knew in advance will not work simply blame the patient. That’s the bloody scam!
This was great confirmation for me. Fifteen years ago I was in the middle of construction of a new home, probably also starting peri-menopausal period, and raising two children. I started putting on unexplained weight and began to get boils/cysts. Not extreme case; 1-3 at a time. But who wants to tell anyone about it. In 2008, I was diagnosed with hypothyroidism and was put on Synthroid. I have not had a boil/cyst since. The weight gain continued, joint pain, body ache, tiredness, allergic reactions to certain food (immediate congestion), sinus infections, etc. I just recently saw a functional medicine dr. who told me that I probably had Hashimoto’s, which I was never told before. Blood work recently came back, and I was positive for it. He suggested a Paleo diet which I have just started. I am hoping that this will uncover items that are my triggers once I am ready to add them back in. I am already losing the weight. For me, I believe, the HS is autoimmune and hormonal related.
Hey Christopher, I really enjoyed reading your article. I will have to give Paleo diet a shot. Btw do not forget to check out a new website about this skin disease http://hidradenitispatients.com .
Hey everyone,
Thanks so much Tara for sharing something that is so hard for all of us to talk about.
I first developed Hs when I was around 18 years old but for three years just tried not to think about these mildly painful, strange lumps I noticed in my groin area. Of course, this only got worse until I graduated university and was in so much pain that I was hobbling rather than walking when I had a flare up.
The doctors also gave me antibiotics and a topical cream to no avail.
I am so grateful for the day I read online, on a message board (!!) that cutting out gluten can put your HS in remission.
After going gluten free, the results were instantly amazing and I can honestly say this has cured me. I can only hope more people with HS try cutting gluten out too as it is the root of all evil for those with HS.
I’m not saying that I don’t still get the odd few flare ups, as I’m actually having my first one in about 10 months right now, which I realise is because I ate Corn Tortillas at Wahaca that I thought were safe.
I wish I could tell everyone with HS individually, but please please do give cutting out gluten a go. It really has changed my life.
I want to get my story out there for everyone suffering with HS.
Background, I am 38 and have been suffering throughout my life with cystic acne on my face, and developed weird cysts on side and bottom of boobs in my 20′s and discounted to years of cystic acne back then, doctors discounted as a common skin condition for someone who had skin issues all my life. Then when I was about 30 I started getting them around the butt area, and inner thighs, again dermatologist said to keep areas clean and dry and discounted as a personal hygiene issue, told me to use anti bacterial soap. I shower daily and know how to clean myself, and special anti bacterial soaps only aggravated the issue. Finally found a decent primary care doctor and she saw the old cysts and a new one, told me I have HS…..finally a diagnosis, and she told me it has nothing to do with hygiene. But she wanted me on tetracycle to prevent infection, and told me no known cure and no known cause, but thought it was hormonal since most of my breakouts happened right before my period. Also she thought it was hereditary. Now 38 and this might be the worst year ever. Started in armpit, and continued on inner thighs, I came accross a couple of studies online and here they are:
A French study that ended in 2014 linked a zinc deficiency in skin biopsies where cysts formed. Some people benefited by taking a zinc supplement but not all, and research shows that too much zinc can lower copper levels which is needed for the immune system. There are zinc supplements, which I tried for less than a week with no real change, and I got concerned with overdosing on zinc since it can have adverse affects on the body over time and I get plenty of zinc in my diet so really no need for the added zinc. I recommend a blood test to see if anyone is deficient in zinc prior to use of supplement.
With no relief and hardly able to lift my arm, I came across a study on NIGHT SHADES. Night shades are considered inflammatory veggies and fruits. They are marked as healthy, and loaded with wonderful vitamins, but not everyone can handle these types of foods. Especially since they were in my diet atleast 4-5 times a week, so I have ELIMINATED them from my diet. It has been 2 weeks to the day, after the most intense flare up of my life and everything is healing. I truly believe that eliminating Tomatoes, potato (except sweet), peppers of all varieties, spices such as cayenne, chili powder, red pepper flake, paprika, have helped tremendously, infact I even lost weight. Please try it, I truly believe my suffering is do to inflammatory foods, and its hard, I love tomatoes and potatoes and spicy food, but at some point you must look at your diet. There are a ton of articles about night shades, just google them, and try an elimination diet. Mine are healing, slowly, but healing and I am thankful.
Here’s another couple of things that have brought me relief and healing: Protein vitamin shakes, not the muscle kind but the healthy vitamin kind. Bought it at Walmart for like 10.00 and tastes like raspberry, mix it with almond milk and coconut water. Electrolytes and vitamins help with the healing process, and since I took out some veggies I loved I replaced with a nutritional supplement. Also, mix together Epsom salt and a small amount of vinegar in a warm (not hot) bath and soak at least 3 times a week for 20-30 minutes at night before bed. Where loose clothing to bed on clean linens, and you will feel great and cleansed the next morning. Prid drawing salve with non stick bandages can help to draw out some of the yuks but can aggravate if used too much. Don’t use deodorant on the infected arm pit area. Its summer and what I have done is clean the arm pit with cotton balls and Bactine spray (in first aid at pharmacy) whenever I feel a stench coming on, just go to the ladies room and clean the area, it takes seconds and the smell will go away. Odors are caused by bacteria, and Bactine will kill that nastiness and clean the area so no other cysts develop in the same area. Use Vaseline to keep the area moist after cleaned. If a wound gets too dry it will not heal properly.
I am 2 weeks into my experiment and feel better, and healing. I will update you when I am completely healed. Also note if you decide to do an elimination diet of night shades, beware…..the spices I mentioned above will (absolutely) aggravate or make a new flare up. While on my diet I had 2 hot dogs and didn’t realize there was paprika in a hot dog, I WOKE UP WITH 2 CYSTS (ONE FOR EACH HOT DOG) 1 1/2 DAYs LATER. Keep a food journal, track how you feel and when your flare ups happen. Mine would usually develop after thinking back to what I ingested 1 1/2 days after consumption. A food journal is necessary.
Be safe, and think about what you are ingesting and ask yourself if you wouldn’t feed your dog the foods mentioned above or even any other animal, why would you ingest it?
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Thanks so much for making this post. because honestly I felt the same way it’s sugar related. I still feel that way. I went primal last year june 22 2014 and quit a lot of things I used to do. I suffered with 3 to 5 boils a month in my armpit, groin, head and on my lower back. It was absolutely horrible! After about 2 to 3 months into the LCHF diet. I realized hey, the boils are gone?(along with the high BP, Risk of Diabetes, and several other things changed) Go figure! I recently, Thanksgiving ate some crap I shouldn’t have. I am paying the price now! Two huge ones in the same armpit. It’s killer! I am rotating ichthammol, ointment from doc and antibiotic ointment. I also put heating pad on it. I will not fail like that again! I forgot about these damn things, I was swiftly reminded after Thanksgiving. I wish I would have known about this diet years ago! I have always been overweight and honestly I could eat salad and still gain weight! Carbs were doing me in and I as clueless. Now It’s amazing, well at moment not so great, but as far as diet, it is! Just waiting for these to clear up!
I have suffered from this for over 15 years and FINALLY found my cure! I clean the area in my daily shower with Neutrogena Exfoliating Face Wash (orange tinted bottle) and they are GONE!!! I don’t know if its the salicylic acid or the exfoliating, but I don’t care because it WORKS! I hope this helps someone!!!
Hi guys, i have had hs for about 13 years, i’ve lived in puerto rico most of my life, my hs appeared when i was about 20, i was first told it was an acne outbreak, it was not until a week ago that i was told i had hs so i began reading about it, i read one of the causes was sweat glands and it could be triggered by hot and humid weather, i am conviced this it was causes it in my case, why? puerto rico is a very hot and humid place, i was born in D.C and lived there and germany for the first 9 years of my life(dad was in the army), i moved to P.R at age 9 and almost immediately felt uncomfortable with the humidity and heat, i started getting skin conditions (but not hs), anyway, in 2010 i went to visit my sis in massachusetts in december to spend the holidays with her, i was there until late february, i had not left pr since i was 9, in those 3 months i was in massachusetts it was obviously cool/cold weather, i didnt sweat once, and guess what? no hs outbreaks at all! i felt so good but i didnt sweat put 2 an d 2 together, i came back to P.R and within a couple of weeks my hs had returned, this time even under my armpit, but i never told anyone because i was ebarrassed of my condition, i then and left pr and moved with my sister in late 2011, i lived in a non humid envirement from late 2011 to 2015 and had no major hs outbreaks in those almost 4 years, sure i got a handfull of boils a year but they healed quickly and they were only a handfull a year at most, much better than a handfull a month like i had in pr. Anyway, ihad 2 move back to P.R in march 2015 to help my parents, i started getting those monthly boils again and under my armpit it got worse then ever, i got depression and had an anxiety attack in november, last week i got tired of being embarrassed of this and went to the doctor, as soon as he saw my armpit he knew what it was, hs he told me, i saw the pictures and now i finally knew what i had, im gonna have surgery in my armpit, he told me about the sweat gland and humid weather and how hs is not uncommen in tropical places, i told him how i didnt have much problems when i moved to the u.s for a few years and he understood, since im bilingual with a bachelors degree in my field he adviced me to move to a non humid climate after the surgery, i agreed with him, i already had a job lined up for next month anyway. I think the cause of hs is not the same for everyone, some get it by smoking ( ihave never smoked), some by the type of food they eat( I will look into that) but im convinced mine is caused by the type of climate im in, i mean it can’t be a coincidence right? anyway, this blog/site made me feel better that im not alone, we will keep fighting on!
GODBLESS!
Mine didn’t show up until I was 18 or 19. I have tried the new drugs that are supposed to help. Humira worked but I stayed sick all of the time. I think I am going to try this. It will be hard but I will probably feel so much better.
Two things helped me tremendously. Certain Dri antiperspirant on the armpits. It’s prescription strength, you apply 5 days in a row, then every other day for two weeks, then twice a week for 2 weeks, then twice a month. Now I rarely use it, maybe once a month. It closes ALL the pores. But that didn’t get rid of the other bumps all over, for that I did the AIP diet. Thank you Robb Wolfe and Tara Grant, author of “The Hidden Plague”. I believe God lead me to you guys!!!!!!!!!!!!!!! You SAVED my life!!!!!!!!!!!!!!!!!! It’s not EASY, but sooooo worth it! Sara Ballantyne has some great recipe books out. You CAN put your disease into remission!!!!!!!!!!!
Tara, my appreciation and thanks for this article know no bounds!! You saved a life!!
Let me tell my story and how I was able to put HS into remission.
I live in Lagos, Nigeria. I have had HS for more than 20 years. Had 4 surgeries, and two skin graphs. Nobody knows what kind of boils I was
always having under my amrpits that keep coming back for years. The issue was that it smells so so badly
and people started avoiding me.
The climax of the ordeal was last year around july,2016 when I had major flare ups. It was smelling so terribly that colleagues at
work couldn’t sit close to me; at that point I felt like my world was crashing. I took an emergency leave of absense from work and decided
not to go the doctors this time but search for help myself. None of the hospitals even know the name of the condition save the last teaching
hospital where I had one of the surgeries. That was when I stumbled over this article.
After about 4 months of experimenting with my diets, I discovered the following Nigerian foods give me flare ups :
1. Puff puff
2. Egg roll
3. Dry Peak milk (satchet)
4. Bread
5. Most soft drink brands (Sprite, Fanta in particular)
6. Packaged juice drinks
Eliminating the offensive odour and healing
=================================================
From time to time I still have flare ups; like once in 3 months. On those times, I usually use Hibiclens, which is not bad. But my most effective
treatment is HOT WATER PRESS. This, completely removed the fear odours, and the swellings disappear faster. When I discovered this, it gave me
a new life!! Thanks!!
Awesome!
My trigger foods are mostly oily based. Olive oil, cheese, mayonnaise, any kind of fried food and nuts. But even if I do completely remove these factors in my diet, I can still get the eventual boiling, but at a much less frequence and hurtness. I do smoke but I’m still not convinced it triggers the symptoms. I know by experiencing for some years that sugar is not something to worry, but I am an alcoholic who mostly just drinks vodka and I’m afraid it is in fact a bad ingredient to the disease.
Hi Chris,
I fully agree with the importance of food as a trigger for HS. There is growing evidence that nightshades are a trigger for inflammatory conditions, and dairy and gluten are also two well known ones. For me, gluten makes the most difference and I eliminate 90% of flare ups if I am very strict with gluten avoidance (including being very careful with cross-contamination) – e.g. not sharing the toaster. I came across an article by T. Wilson about inflammatory foods for HS and it corroborates most of my personal experience:
https://naturwarriors.com/2017/06/19/revealed-top-6-most-inflammatory-foods-that-exacerbate-your-hidradenitis-suppurativa/
It also explains well the sugar – insulin – inflammation – flare up connection.
Stay strong!
Hello from Greece. Thank you for speaking about it. I have HS 6 years now and my pain level is vwry high. Last month I started homeopathy. I just wanted to ask, do you think is gonna help somehow? I olso started paleo diet but is to soon to see a change. Thank you a lot for your time!
Homeopathy (diluting down some mixture to undetectable levels in hopes that it will store its energy properties in the water and transfer them to you for some type of cure) is probably just a good way to throw away money. I’d spend the money on good food and better supplements instead.
I was diagnosed in April, but I have only had 4 flare ups in the 5 years that I dithered before getting a professional opinion. The flare up in April was arguably the worst, but I’ve gone months to over a year without symptoms (other than a pea sized lump in my armpit that only hurt when the doctors pulled on it). Is it still likely to be something in my regular diet that causes this? I have Tara’s book, and it sounded like she had symptoms every time she ate potatoes. Was that after an elimination diet, or did she react every time she had potatoes even before the diet?
I’m thankful that I’m not in worse shape, but I wonder if it’s really hidradenitis suppurativa when I get symptoms so rarely, and how something in my regular diet is causing it when I eat the same foods for months without issue.
Any thoughts would be helpful.
I’m still trying to think back to determine potential triggers for the couple smaller bumps I’ve had – if those were even HS in the first place – but I’m mostly certain the one big thing that changed for me before my first larger/solid abscess under the skin was a lot of stress & anxiety.
I was in pretty bad shape for a few months but as I was starting to feel better the first creeping/traveling abscess appeared. I think the anxiety/stress from that might’ve made HS worse for me.
I hope your HS goes away soon
I just wanted to say that I suffer from this or just boils that are caused by sugar and bad carbs. I have finally narrowed it down and figured it out. The sugar is directly related to my boils, if I were to go to a party after doing low carb and sugar-free diet and have something there. Within a couple days boom, boils again….. For years I didn’t know what it was. I have had doctors on 3 occasions diagnose me with impetigo! I was like are you serious? No one in my household but me had a problem with boils specifically in the armpit, groin and I even had a couple on my head and in my fat back. Honestly, if I continued forward on the diet given to me by the doctor I’d be 400 lbs and still suffering. Instead in 2014, I cut out all sugar, then a few months later learned more about the low carb. Started that and a 100 lbs less and no more boils. I will get one or three no matter the serving size of sugar/carbs. If I eat fruit! I get them. Go figure….. I am so glad I found out what caused it though! It truly has helped end my suffering from boils! But it also lowered my bp and everything! 🙂
Thank you for posting this article. I’ve been dealing with this for almost a year, doc & dermatologist only recently put a name to it. I wonder if there’s a relationship between stress & a person’s reaction to other potential triggers of HS. Or some other kind of threshold that might make the same levels of a trigger affect someone more than someone else.
Around this time last year I was dealing with a lot of stress – dealing with a move from an ex’s place in with roommates I wasn’t very familiar with, thinking about uprooting and moving across the country and what all that would entail, etc.
It’s hard to say which of the bumps under my arm was the first HS-related bump – I thought the first two bumps (one a year, starting in 2014 I think) were some kind of potentially infected acne boils. The larger/harder under-skin tract-like bumps developed this January – after the tangled mess of stress/anxiety/depression was resolving – then thinking the angrier boils were potentially staph made be even more anxious.
A couple rounds of antibiotics over a month or so seemed like it made the bumps go away for a few months. Once they went away, the lifting feeling of the stress melting away was incredible. I was really happy for the first time in months and it was incredible. I had several good months and started noticing another bump under my arm. I still went on with my day to day and kept up with it until it got really swollen over the span of a couple days. The dermatologist lanced it & I’ve still got some kind of boil that refuses to go away, and it’s been slowly getting larger over the last couple months.
I still feel like I’m recovering and getting better from that storm of negativity – diet and smoking habits have stayed about the same through this past year. I feel like that breaking point of stress is probably what brought this on, I’m just hoping that making some changes after reading this article and a number of these comments will help make this condition go away.
I’ve had HS since I was 14, I am now 30. 5 years ago i was diagnosed and went 100% nightshade free. I have been in remission ever since. Nightshades can be in a lot of processed foods, so to cut them out entirely takes effort. Lunch meats can have potato starch, canned soups can have paprika, salad dressings can have red bell pepper. There’s a lot of foods that also list “spices” as an ingredient, so I either contact the manufacturer or skip it. I’ve found that if I am meticulous, I have no lesions. This is a disease that happens from the inside out, so what you put in your body matters. Also, if I accidentally do eat a nightshade, i get a lesion within 12 hours. BUT since I’m nightshade free, lesions go away within 3 days rather than weeks or months. It works. It’s hard to do, but it is possible.
I’ve too had my share of horrific experiences with this disease since my teens. This def should qualify as a disability! I remember back when I was getting massive boils in my inner thighs! I thought it was MRSA and I was scared but I was so afraid of having the drs Lance it that I just followed what others did online,… Hot water compress. I would put PRID and within the same day or next it would drain. I make sure to have that available at all times. If I feel one coming on..I put a little PRID on. You can buy at Walmart where all the eczema/ first aid is at. I had black heads in my inner thighs too.
I was diagnosed at like age 26, I’m 40 now. I’m married with 4 kids. I’ve had pretty good doctors but some really suck bad, I’ve wasted time and money with them, it’s always the same thing… Antibiotics, birth control, hibiclens… It always comes back.
I recently found a dermatologist here in Arizona who is a specialist in HS… Prescribed me antibiotics and clindamycin.. the gel is ok but I’m not going to take antibiotics and then deal with the side effects like yeast infections. I was diagnosed as a stage 1… But I have scarred tissue over tunnels that just healed. I’m over specialists and just taking matters in my own hands. I’ve kept my symptoms at Bay.
I shower daily, I use baking soda and water as a paste to wash areas that I tend to break out at. Just a few seconds and rinse really well as it can be irritating. I them moisturize those areas really good with calming cream-eucerin. I use spray deodorant and when I’m getting a breakout I use PRID to calm it down and then they disappear. For itchy ones I rub Vicks.
I’ve found that working out really helps, sweating out the bad stuff I guess like making the fat cry… And cutting out some food that triggers it. I also suffer from roseacea so food really affects me. I also have vitiligo.. Not very noticeable but I do. I know it had something to do with my autoimmune but no one can figure it out.
I am cutting out nightshades. I’m on a low carb which helps A LOT.. almost a keto diet. Drink tons of water.
I’ve come to terms that only I can control this and use others advice to just live a happy and full life. Yes there are scars, yes there is pain but once you change your lifestyle and are able to lessen the breakouts it will get better. I’ve been married for 18 years, had HS longer than that but have had great sex… Lights turned off or very low… No big deal. I’ve had 4 kids.. my scarred body has been exposed. The more I think about it, the more I research… It consumes me. As a Christian I should know better… I haven’t even prayed for this… And I should. I am. At least to continue to keep it calm. If anyone needs to email I’m at [email protected]. there’s always someone battling something…ours just happens to be our skin… I know it’s tough but we’ve got to keep living life. God bless you all and I pray you find something that works for your body and at least tolerable to not be so down about it. Hugs