Autoimmune Protocol Diet & its Impact on My HS
Hidradenitis suppurativa (HS) is a horrible disease to live with. It is debilitating, stressful, embarrassing, and limits what we can do in our day-to-day lives. I’ve lived with the condition for over 16 years. I found out I had it when I was in college. I was tested for staph infection, after coming in with a large boil on my inner thigh, and it came out negative. I was given 16 injections to numb the area before it was drained, and it ended up eating a hole into my leg 2 inches deep. Gauze packing ensued to help that flesh heal and regenerate, and after a few weeks, a horrible scar was left in its place.
That’s when my doctor began to “educate” me on hidradenitis suppurativa. What I mean by “educate” is most doctors and nurses didn’t know what it was, let alone how to help me. In their opinion, it was due to my hygiene and obesity. I felt ashamed, overwhelmed, and hurt by the time I left that detrimental appointment. I knew I was overweight, but I was also active daily. I hiked, did yoga, and walked. I wasn’t eating the best, but I was trying to make changes. As for hygiene, I showered multiple times a day. Every morning, after every workout, and if I started to sweat too much after any activity. I felt judged. Horribly and wrongly judged.
I isolated myself, hid the pain and discomfort the best I could, and didn’t tell a soul the condition I had been diagnosed with. I lived in a cave of depression, anxiety, fear, shame, and embarrassment for far too long. I couldn’t suffer alone anymore, it was bringing me down, causing depressive moods, isolating me from my family, from having a social life, impairing my ability to work, and even delayed my ability to exercise. Every time I tried; it would cause a flareup. It impacted the current relationship I was in as well. I was treated very differently once my lesions were seen in action. That relationship ended.
After spending several years in silence suffering, I took matters into my own hands and started researching every aspect I could find. I tried different soaps, different ointments, certain brands of bandages and gauze, diets like Paleo (but without nightshades), over the counter and topical medications, hygiene practices, losing weight. You name it, I’ve tried it. I came to one conclusion: there is no universal cure or remedy for hidradenitis suppurativa. It is personalized to the individual. What works best for me won’t necessarily work for you, and vice versa. All we can do at this point is share what has worked for us, and hope it helps even just a few others.
The current blessing in my life (besides my wonderful husband and sweet little boy) is finding the Autoimmune Protocol (AIP) diet. This is geared towards those with autoimmunities, and while we don’t currently know if hidradenitis suppurativa is an autoimmune condition, one study has shown AIP to be helpful in irritable bowel disease and it has been working wonders for my HS. My belief is that it’s due to the focus on staying away from foods that cause inflammation while eating nutrient dense foods that help combat and prevent inflammation. It also insists you go through an elimination phase and then reintroduce foods to identify your own personal triggers. On top of that, AIP seems to be more than just a diet. It’s a way of life.
For me personally, AIP reminds me to put self-care first. It’s not just about food. It includes focusing on what your body is telling you- when you need rest, keeping movement in your day, finding ways to lessen stress, staying hydrated and conscious of how foods are healing or hurting your body. I’ve completed a month in the elimination phase and have had successful results. When I say successful, I don’t mean that all my flareups are gone and that I’m Band-Aid and gauze free.
To put it in perspective, when I started AIP, I was suffering from so much pain and discomfort that my ability to even move around my home and care for my toddler was excruciating. I was in tears daily, doing my best for my son, for my husband, and my home. I also work from home, and it was impacting my ability to do so. I had resorted to purchasing a memory foam cushion for my desk chair to help ease the pain I felt in sitting, and it didn’t help much. I could only work in 10-minute blocks, and by the end of that 10 minutes I was helpless to the pain. I had numerous lesions that were open, draining, swelling, not coming to a head, and felt like it took me 20 minutes just to apply bandages after a shower. And of course, because of the delicate location of some of these wounds, I needed my husband’s help.
Now, after four solid weeks following Autoimmune Protocol, I have two open hidradenitis suppurativa lesions that are no longer painful, don’t cause discomfort, and just need a simple strip of gauze to catch the continuous (but small) leakage. My energy is rising, though I still feel fatigued throughout the day. My skin is clearing up. Especially under my breasts. The sensitivity I used to feel in my armpits is gone. The swelling and pain in my knees have disappeared (I have arthritis as well). More importantly, my mood has improved tremendously. I don’t feel so heavy, emotionally or physically. The brain fog has lifted, and I’m able to do so much more around my home and with my family.
The elimination phase can take a while for some, sometimes up to 3 months before you see full results. For me, I started noticing a huge change almost immediately. Four of my six lesions were healed within days. The swelling and pain in my knees disappeared after a week. And by week 2, I was feeling brighter and had more energy.
I still have a long way to go. Reintroducing foods will be both a blessing and a curse. The elimination phase of AIP isn’t meant to be a lifelong diet. But for me, I know it will be a foundation for what I feed my body. Previous eliminations highlighted the fact that yeast, tomatoes, bell peppers, and potatoes are my triggers. I have a feeling dairy may be as well, but we shall see!
So, you may be wondering, how expensive, overwhelming, or time-consuming is AIP? It’s likely different for everyone. My experience was well thought out and planned over several months. I didn’t jump into it cold turkey. I spent time reading, researching, testing AIP recipes, slowly omitting certain food groups, and focused on spending a small amount of money over a month and a half gathering up all the staple pantry items I needed. I searched for the best deals on food, practiced batch cooking a few meals, followed accounts on Instagram to keep myself motivated and informed, and prepped myself emotionally for what I was about to do. I was scared I’d fail. Worried it would cost too much. Anxious about the results. Wondering if it would just be a waste of time. And then the horrendous flareup of all-time hit me like a tsunami and I decided to dive right in where I was standing and took the plunge!
Cold turkey might work for some, but others might find it less stressful to tiptoe in and test the waters. Informing my family of the changes I was about to make also helped me hold myself more accountable. It prepared my husband for the dietary changes he’d no doubt be noticing in his own meals. Let’s be honest, I was not going to cook several different meals at one time. Him and my son eat the protein and veggies I cook under my dietary guidelines, and then I cook a third dish (if needed) to support their love of rice and/or pasta. I also batch cook their favorite recipes on the weekends, so they have leftovers to eat if what I’ve made isn’t appealing to them. Oddly enough, they both seem to enjoy everything I’ve made so far!
All in all, AIP can be overwhelming at first, especially with the pain, fatigue, and discomfort you’ll likely be feeling. But it can be worth it to find out what triggers your flareups, and how to put your self-care first without feeling guilty for it.
You’re very welcome.
I’m 38 I had HS Every since I was 15 ??
I’m a 51yo man. I’ve had HS since I was 11yo and I’ve tried everything from antibiotics of numerous flavors to elimination and paleo diets. Nothing worked until I found zinc. That’s right cheap over the counter zinc. I started with 100mg/day and, while I experienced dramatic a positive effect my healing stalled. I upped the zinc to 400mg/day for about 2weeks now and the sinus tracts have healed, my lesions are closing fast and are, in fact, healing.
I’m going to stay with the 400mg/day until I’m in complete remission and then I’ll begin to lower the zinc dose and figure out where that maintenance dose needs to be. I hope this helps.
Ken, Zinc seems to help me as well. I’m a 51 year old man as well. Although I was just diagnosed a few months ago. I’ve also found that Candida support supplements helped.
I know this is an old thread but I am 39 years old and have had HS for about 15 years. About 4 years ago I discovered what it was and after trying various things a daily regimen of Zinc and Tumeric has kept it under control for me. I tend to have outbreaks under times of increased stress and when i’m about to get sick. Interestingly I can usually tell when I’m about to get sick when I have a flare up. I just up the amount of Zinc and Tumeric when that happens and it never gets out of control. I know people have varied results with these supplements but for me it has been life changing. Another thing that has helped has been to get on long term anxiety medication. Since I have less of the stress-inducing episodes I tend to have less breakouts. I hope this can help someone that is looking for what works for them.
Good to know! Thank you, Ken. I read up on a study about Zinc after reading this comment, and it seems it can help others too. A “combination of 90 mg/day oral zinc gluconate and 2% topical triclosan twice daily for the treatment of Hurley stage I or II hidradenitis suppurativa (HS).” That is worth giving a try!
Thank you for your story! Strangely for me my HS started when I was 30 and became impossible to manage immediately. The pain is unreal. 1.5 years ago my sister talked me into trying the AIP diet. It took about 8 months and 30 lbs of weight off to see almost full remission! I have had two legions in the last 8 months and when I feel one starting I immediately start the antibiotic and it clears right up. AIP, as well as my dermatologist has been a miracle for me but it is tough. I can even workout now which I hadn’t been able to do for more than 5 years. I have eliminated all gluten and dairy, I think the big culprit for me is dairy, which is sad because I love it. Anyway, thank you for sharing. This is a very lonely disease.
I apologize for the super late response! Dairy is a huge culprit for me too. I can eat a very small amount of goat cheese and be relatively okay, but it’s not worth it to me to have a closed lesion open up and start draining again. Cow’s dairy causes HUGE inflammations for me though. I can have a very small amount of gluten now and then, but I don’t often. If I want a non-veggie starch, I’ll eat rice that has been cleaned, soaked, and steamed in bone broth. Maybe once a week or so.
Anyway, I hope you’re doing well! Happy Holidays!
I’m currently at the worst point I have ever been. Your story sounds almost exactly like mine. Doctors seem useless or ignorant of my condition. I’ve tried creams and pills, nothing seems to work. So now, im going to try eating better and cutting out breads. But my question is, the ones you do get, the really bad ones that haven’t “popped” ways to treat the pain? I’ve tried tea tree oil, compresses, hot bathes, boilease and nothing seems to make the pain lessen,
I’m sorry for the late reply, the holidays have me busier than usual. To answer your question, and this might not work for you either since we all seem to need different things to help, try a warm bath with epsom salt, a few drops of tea tree essential oil, and some baking soda (a few tablespoons) to help detoxify. Let yourself really soak in for about 20 minutes or more even. It should help relieve some pain, cleanse the wound, and open the pores more so you can dress it with some gauze and coconut oil after. If the boil won’t open and it’s causing a lot of pain, I’ve found Vicks Vapor rub to be really helpful. Just take caution in where you put it.
Another thing that works for me is Motrin. I haven’t used it lately due to being on the AIP diet (it can effect your gut health), but I used to take some for pain and swelling. It worked for me especially well if the boil wasn’t opening. Within a few hours, it would open and drain.
I hope this helps! Happy Holidays!
I found that Vick’s vapor rub help with the pain a lot and helps bring them to a head much faster than anything. Also making a turmeric paste n cover with gauze helps.
You are not lying I have experienced this with 6 different Doctors. They put me on Humira and it destroyed my liver, hair, joints. They wanted me to to take blood thinners to stop clots from forming and existing out of my lesions. I am now using everything natural and not dealing with uninterested doctors. The best doctor I have dealt with is my OBGYN and she doesn’t even treat it, she gives me a back bone when dealing with the other doctors.
Stay strong! You will find help… I am now going to use Zinc seems to help a lot of HS patients.
They placed me on Humira, and I feel like it makes the outbreaks more frequent and definitely more painful. I have yet to find anything that works for me, when I have an outbreak I get several in the groin, armpit, and breast area all at one time and they are excruciating and all I can do is wait until they bust. No doctor wants to help. My husband thinks they are zits and blackheads and wants to pop them which only makes them hurt worse. I end up feeling embarrassed and completely at a loss.
Hello Kelsey, and to anyone out there who may know. I was diagnosed with H.S. last year (I am 63) I have used some topicals (Rx & OTC). However my Derm prescribed an oral antibiotic and it kicked it’s helped tremendously. Yet I cannot stay on that forever. So, after this month I will get off the antibiotic and try to see what happens. I have lost 50 lbs in the last few months, and the Dr says that should also help. I am curious about what people say about their diets and cutting out bread. Is that a thing to really remove from eating? Also, I am encouraged to see that Zinc and Turmeric seem to help some. Maybe I should start those after getting off the antibiotic.
I’m in tears. I was just diagnosed today with HS. I notice this in 2005 when my first one appeared. I was misdiagnosed with having hepatitis. I cried for months because I’ve always been very careful and I only had one partner. I believed he betrayed me. I was taking Valtrix for five years and then in 2009 I found a new doctor who asked “who told you, you had hepatitis. My doctor ran a series of test and told me you don’t have hepatitis but you do have a skin fungi. He didn’t do much research and gave me a prescription and told me to take bleach baths for a week and it should go away. I did all this and over the years it just escalated and became worse. At one time I would only get maybe one or two at a time, but hear recently I counted 18 boils 9 under my breast( Left breast 3) right breast 6, which it seems my right breast always get the most.
One on the upper crease of my behind and 8 between my thighs and lower stomach
I’m so embarrassed of my skin, I’m literally draped in clothing everyday of my life because I’m too afraid to show my skin
I’m the ugliest person alive, I won’t allow my self to date or get close to any guy because I’m so afraid of how I will be viewed. I’ve lived with this since 2005 it is 2019 and I’m now just being properly diagnosed
I’m so sorry you went through all that. The misdiagnosis alone must have been a lot to handle and deal with. As for how you feel about yourself and the way you look, I can relate. Even to this day, with a loving and accepting husband, I still feel ashamed and ugly at times. I have one wound that has been draining and healing for 3 months. It’s not big. It’s not painful. Just a burden now. But when my husband helps me by getting a close up view of the healing process, I start to feel down on myself. This wound happened when I tried to reintroduce coffee into my AIP diet. My flare up consisted of several small boils and one larger one that needed packing to help heal. That larger one is the one still healing, and it will no doubt leave yet another scar. I’m not sure what to say to help you. Because even with the support of a loving partner, it can and will feel debilitating and often shameful. We didn’t ask for this condition. We didn’t ask for the pain, discomfort, scarring, and all the other ramifications that come with Hidradenitis. But we have to deal with it all the best we can. I’m hoping you will see that you are not your condition, but you can do things to try and control it. What we feed, put into, and put on our bodies all contribute to HS. Discover what triggers you and stay away from it.
I hope this helps.
Try bathing in soaps with tea tree oil in it. Also purchase turmeric capsules n they will help with the flare up. Rub your lesions down with Vick’s vapor and I’m sure you will find some relief. You’re not alone.
Wow! I just have to say how encouraged I am by everyone sharing their story! I so appreciate the vulnerability! Reading these stories had me in tears because I thought I was the only one living with this! I’m a mom of 4 beautiful kids and at 32 years old, I feel like I should be “over” all these skin issues! I had my first cysts in my groin in 2006. The pain was out of this world! I had it lanced which was a tad traumatic haha! And ever since then, they’ve popped up at different times and different places. The groin and armpits are my most problematic areas. In 2015 I had surgery to remove the funk from my armpit. So gross and so painful afterwards with an open wound! Healed up fine. Until this week! It’s back with pain that’s like “ I’d rather birth more kids!” Oy stinking vey- OW! And then in 2016, I had surgery on the other armpit for the same thing. They attempted to dig it all out. But they sadly didn’t, and it’s been leaving tracks, draining and causing redness/scars all around my surgery scar. To say this HS has been a journey is an understatement as I’m sure you all can relate to! It’s our way of life that we battle this! I saw a dermatologist today and his recommendation was Humira as a starting point. Had anyone taken this and wouldn’t Mind sharing their experience?? I’m electing for surgery again( from a different doc ??) to hopefully fully remove all of it from my armpits! I’d love to know more medical treatments y’all have done. The AIG sounds great! God bless you all!
Thank you for your kind words. I am not a medical professional, so please don’t take any advice I’m about to give without speaking with a doctor first. I have found ways to help myself heal and avoid boils by going as natural as possible with anything that I put into or on my body. I don’t react well to a lot of medications, and my skin overall is sensitive to quite a bit. So using as few chemicals as possible is what has worked for me.
It’s a slow process. I didn’t just spend thousands of dollars I don’t have on completely changing every food and product in my house. I started with food, the AIP diet. Then I changed my body wash, shampoo and conditioner. I also opted for an organic, non-toxic toothpaste and deodorant. Next up will be laundry detergents and cleaning products. The more I change, the better I feel, the more energy I have, and clearer my skin becomes.
As for your armpits, I never had a boil there that opened, nor did I need surgery. What I had was extreme sensitivity, especially after shaving. I would feel bumps starts to rise, and they caused some pressure and pain, but never surfaced. So, your condition sounds different than mine, but maybe some tips will end up helping you.
I took the hippie way out and went without deodorant for a week. I know…gross. Even through sweaty workout sessions. I wanted to detox my armpits from all the chemicals in standard products. I used an all-natural, fragrance free soap to wash them everyday while maintaining the AIP diet. Soon, the sensitivity disappeared! I will say not all organic, non-toxic deodorant works well. I tried a few and was unsatisfied. I almost resorted to making my own! Then I came across Lone deodorant (the unscented version), and love it! (I am not affiliated with the company by any means. This is just a product that works for me. –> lonedeoderant.com ) Since this change, I have not experienced any sensitivity in my armpits, not even after shaving. But keep in mind, I am also eating clean, using clean products on my body and in my hair.
I would recommend giving a clean lifestyle a try. I hope this helps!
I’ve had the surgery on my right armpit. Had my sweat glands removed and it’s been 20 yrs ago and never once have I had another flare up under that arm. I didn’t hv it done to the left and still suffer from the flare ups. What I found to control them was when I use to take the turmeric capsules bout over the counter from the old pharmacy stores. It helps. When I have a flare up I use Vick’s vapor rub and it’s help so much with the pain and brings them to a head so that I don’t have to go have them lanced. Believe me, I know the pain is worse than the three children I gave birth too!! Worst pain ever. Hope this helps you.
Thank you very much for sharing this, I know it mustn’t have been easy! I’ve been to a dermatologist specialized for HS, have stated antibiotics and creams. But diet is a big deal, after reading this article I have commenced AIP. I have been to a holistic therapist and she told me, that it was a hormonal imbalance and to change my diet. But I was lazy. NOW I WILL fight to eat better and feel better so that my skin clears up!! Thank you for this and the support. My HS dermatologist told me about this website and the support groups. Much appreciate it everyone! Love
My name is Ashley, Im 35 y/o and have been living with this since I was 15. No one knew what it was until my mother changed Dr (as she and her mother share the same issue) and revealed to me what this was. I am completely distressed with many many scares. I went into surgery 3 years ago for the area above my tail bone. It was a very long and hard process to heal from. And still without a formal diagnoses. I am at my wits end at this point. I have been having a severe flare up now for a couple of months and cannot walk at this time today. I have a constant drain in my arm pit at this time, as well. I’m actually worried I will have to go to the ER this evening and that is the last place I would like to be during this Covid-19 pandemic. I am to my wits end. Thank you for sharing your story I am now looking into places maybe I can get a little hope. I just want the pain to cease. Thanks again.
I feel your pain. My first flare up was in that same spot above my tail bone. You hv to keep that area dry as possible and not sit for long periods. That will cause the flare ups. Start taking thyme vitamins and zinc. They will help. I use Vick’s vapor rub for my lesions. Only gel deodorants. Bath in soaps that have tea tree oil. Hope this helps.
I am 33 now and had HS since 15 yrs old. What has helped me is the zinc (do 100mg now) and not consuming dairy and nightshades. Potato was actually my biggest trigger. If I ingest potato, I actually get a new one within hours. It seems like HS is tied with food. And it seems like the “food triggers” may be different for every person. If you want to find what your “food trigger” may be, maybe it’s best to start with eliminating gluten, dairy and nightshades. Once ur skin starts clearing up, introduce these things back one at a time and see how your body responds. It took me 5 years to figure out what triggered me … but it had made a tremendous difference with my skin. It’s not all gone (because I sometimes eat something I’m not suppose to) but I’ve gone from many flare ups at the same time to a few a month. Healing time has also improved.
Dear all, I m glad I ve found this page – my daughter suffers from HS since the age of 11. She soon turns 18. She started with AIP 2 1/2 months ago and is a bit disapointed that there is not yet an improvement visible. As She was eating vegan first, it was hard for her to eat meat again, so she is only eating fish and a little of the “bone-broth” again. I know it can take longer…do you think she should definitelx eat more meat? I guess she could eat chicken… Would be very glad to hear from you! And to everyone who suffers out there: You are not alone, you ARE beautiful no matter what!! and you will get better! Try out new things (AIP, Stressmanagemnt…” and you will find out, what works for YOU! Thank you!!
Thank you for sharing. I’m glad the AIP is working for you! My HS is triggered more by stress than by anything else. I discovered the evil nightshades food group years ago and thought it was the holy grail. Turns out, reducing stress was the key for me. Easier said than done though, unfortunately.
It was comforting to read your story. Thanks again for sharing.
I also have HS. I got my first boil on my face about 7 years ago. The dermatologist injected it with triamcinolone, didn’t tell me what the condition was, and sent me on my way. Since then, I have had 6 recurring spots in my groin, basically on my panty line, and a couple are so painful I can’t walk. I took a food sensitivity test and discovered that I react highly to cow’s milk, yogurt, garlic, gluten, and egg whites. I’ve eliminated all but the garlic and have seen some good results — until recently, but no hidden source, I don’t believe. Can sugar be a culprit? Or can this get worse before it gets better? I had one spot that flared WAY up, then in two days, is down to almost nothing and is healing. I don’t want to lose hope on this elimination because I do believe it’s working. I’m so scared to lose hope.
Thank you so much for sharing your story Jaye! I started seeing boils and lesions about 6 years ago. I was wondering if you’ve seen a difference in your scars?? I’m so embarrased and cry sometimes seeing the scars on my inner thighs… I don’t think I can ever wear a bathing suit again, they look so ugly. I’m going to try the AIP diet and see how it works for me.
Thanks for sharing… I am 32 and have had HS since I was 14. I have been able to hide my scars up until recently when my thighs have been out of control. I have been having the same thoughts when I went to take my daughter to the water park with her friends and her friends moms. I was in complete panic when having to out a swim suit on. I ended up wearing these swim short things which didn’t look very cute and was in pain most the time. I’m sorry for you pain and discomfort and I don’t have any good recommendations but I really appreciate you sharing. It made me feel like I wasn’t alone.
I am SO happy to find your story/article. I too have been using Functional Medicine and the AIP Protocol to help me with my HS. (My infections began around age 12/13 at puberty and I have been suffering with severe abscesses for over 50 years now.) I have come to believe that both inflammation, Biofilms and hormones play a large role in my HS. I also believe that HS is Autoimmune and so this is how I have been treating it. While AIP has not “cured” my skin issue it has improved them tremendously and my cysts/abscesses are fewer. I recently treated my HS and my biofilms as well as a Candida overgrowth (a fungal infection) with a very strong and powerful homeopathic Biocidin HS treatment. This was a 7 12 month treatment and I think this has been very helpful for my infections and my skin issues overall. If you wish to know more about Biofilms feel free to contact me personally (that protect the infection so that antibiotics and other treatments do not reach below) and/or you may wish to join my Facebook Group, Investigating Biofilms. Usually a person on AIP is like minded. I have been on AIP/Paleo now for 5 years.
Bless you for sharing your HS fight!! I’m 52 yrs old. I remember the very first “boil” I got. Inside of my thigh. My parents took me to the doctor who didn’t know what it was. As the yrs went by, I got worse bumps. One Dr cut one open from my arm pit, drained it, took gauze dipped in meds (??) and stuffed it down in the hole. Mom pulled a bit out at a time. I was miserable. In my 40s, I went to a skin specialist who told me I had HS. 30 something years to be given a diagnosis, finally!!! Now I’m going through menopause I don’t have the breakouts as often. Also, I had breast cancer and received radiation on my right side. No breakouts in that arm pit at all now. My baby sister has them as well. It runs it families I believe. I wish all of you well and hope you find peace and wellness.
So glad I found this page. I have struggled with HS for about 37 years. My first flair up was when I was 18. I had a polinidial cyst removed from my tailbone and boils under my arms. I was so embarrassed because I played volleyball in college and these things would drain while at practice. I used a lot of gauze and tape through those years and many years sense. I have had 4 surgeries on reoccurring issues in my tailbone and behind with the most recent being something called the Bascom procedure where they just kept taking out tracks and they pulled the skin from one side of the buttocks to the other side so basically they cover the crack of your behind. (Yeah it feels REALLY WEIRD) I tried Humira 3 years ago and it did not go well for me. I developed an excessive amount of joint pain and other problems. Like most of you I have tried everything in the world just to find some relief. Recently being under a lot of stress, for the first time a huge boil came out on the back of my neck. It was extremely painful and embarrassing. I think god that my partner is so understanding and does everything possible to try to help me with this. I do have a question to all of you. I normally start feeling horrible physically when I have a flair up. I get drained, my joints hurt terrible, my chest Starts to hurt and overall I just feel horrible! Does anyone else experience this? Thanks to everyone for sharing your stories.
I was diagnosed with this yesterday but I’m pretty sure I have had this since I was 16, I’m 31 now. My current boil has been there for about a month and all I have wanted to do is sleep since it’s been there. My dermatologist started me on antibiotics and I can tell you today I feel better than I have for at least two weeks. I didn’t realize there was a connection between the two until this morning.
I had a boil on my groin that would not go no matter what i did! It was so painful that in the end i tried magnesium sulphate paste, stuck a dressing over the top and literally within a couple of days the boil burst and drained!
I am so glad I found this page, too! I’ve had HS since puberty, and find it is actually worsening since menopause. I feel like my immune system doesn’t work as well. Anyway – responding to Peggy: yes! I notice my body aches horribly when dealing with a flare-up. I’ve always attributed it to walking or sitting crooked, since my problem areas are groin, inner thighs, and back side. Thank you for your post; being validated helps so much.
I’m glad that I found this group. I had my first perianal abscess at age 30 and at 36 this month, I hit my 7th abscess after having my appendix out in December last year. On follow up with the colorectal surgeon for my appendix, I asked him to check out a suspected perianal fistula. The last two abscesses I chose to treat at home with coconut oil, turmeric and salt plus a sitz bath. Thought it was great until the surgeon was shocked and said I could have done more damage than good. Today, he investigated the suspected fistula which would have required a seton but instead he removed two sinus tracks and is querying perianal HS. I wouldn’t be surprised if I do. My brother has an inflammatory lip disease – both connected to crohns but no evidence of crohns. I’m wondering if the bikini and facial ingrowns are connected? I’ve had a few too many lately and they get huge and are painful. I know that I love cow’s milk and far too many coffees and I love cheese – might be time to kick it and go dairy free. I’m glad I have a place to vent the frustration.
Thank you all so much for sharing.
I’m 41 now and had my first incident 20 years ago at Uni. A very large cyst under my arm which would burst then start straight up again. Absolute agony which nearly caused me to miss my final exams.
Uni Doctor would Lance it every so often but as it kept recurring I eventually had hospital surgery,
Bizarrely this kept it at bay for 10 years before returning in the other armpit and groin.
Moving to a Mediterranean Country helped, but I’m not sure whether this was the diet, regular sea swimming, increase in vitamin D or less stress?
Turmeric does seem to help to an extent.
Can I ask if anyone has had success from antibiotics alone? That is all my current Doctor suggests but I have not had great results in the past.
I personally, have not had success from antibiotics alone.
I feel so overwhelmed with all the information here. I’ve dealt with HS for about 12 years now I had surgery under both of my arms in 2013, it was painful and took a while to heal but so far I have not had any flare-ups under there anymore. It’s not the best thing to look at but no pain there anymore. As of now, I do have it in my groin, under my breast, my buttocks, it’s just everywhere. It’s very painful, very shameful, very debilitating, and very depressing. I know that I should definitely change my eating habits and I really want to try I’m just as you stated afraid of failure and idk if I will be able to stick it out but at this point I’m desperate. I’m going to try the zinc, I’ve tried turmeric I didn’t really see a lot of help from it but I’m not sure if I’m getting the correct turmeric or taking it long enough I just don’t know. I’ve tried so many antibiotics with no help I’ve had a pic line put in my arm where I had to give myself medicine through IV on a daily basis it was unsuccessful as well. I’ve been considering humira but I’ve read so many bad reviews I can’t even imagine trying it because this is already bad enough without adding to the problem. Any helpful information would be appreciated. I’ve been using tegaderm with gauze to try to catch the drainage but I’m having a hard time with my inner thighs because it just doesn’t stay there but I need to find something I’m trying to wrap it but it usually falls off my leg while walking so it’s been tough to find something to catch the drainage from my inner thighs and now that it’s on both sides it’s even worse. Anyway we all know how terrible this disease can be so I’m really grateful to find people that are dealing with this as well that can understand the pain and turmoil it causes because I usually suffer alone. I’m trying to avoid withdrawing from people but it’s difficult bc of the fear of embarrassment, worrying about someone smelling me or the drainage. It’s just been a lot however reading everyone’s stories of success and struggle have been very helpful for me here tonight and I will definitely be checking back in with this group. Thank you for sharing your story and thank you to everyone else that commented and shared theirs.
Replying to Gigi – I’m so sorry you’re feeling so poorly. It’s easy to feel hopeless when you’re in chronic pain, doctors don’t know how to help, and outbreaks are so unpredictable. I had a horrible cyst on my inner thigh last year, and was called out of town for three days of business meetings. I was beside myself! How would I walk? Catch the drainage? Sit For hours on end? I managed to find loose fitting black pants under which I wore a version of Spanx made out of a very thin, slight clingy material. The Spanx held a soft luncheon napkin in place just enough to catch drainage and permit movement (although I did have to adjust periodically). I purchased the Spanx at Kohl’s, who had a very large selection of styles and sizes to choose from. I hope this helps you, along with the knowledge that you’re not alone and where there’s a will there’s a way. Keep researching, think out of the box, and find what works for you.
Michelle V Mullen
Wondering what brand of zinc and tumeric supplements you use. Also -what milligrams. My daughter was just diagnosed and am curious about this. Thank you.
My 11 year old son just got diagnosed. So I am trying to learn everything I can to help him manage it too. Someone earlier said they did 100 mg of zinc daily but upped it to 400 mg because they were having so many issues. They were planning on going down till they found their maintenance dose. I was wondering if anyone has tried eating probiotic foods with each meal? Since it is bacterial. I know some people mentioned bone broth to help heal their gut.
It’s like you shared what k am going through. I’m 20 now and I had HS from 10 grade. Like you said, unbearable pain, so much anxiety, phases of depression. I found this and it helped me raise my mood. Thank you and much live from India.
Hello, I am hoping someone can help me. I was diagnosed with HS in mid march. The boil open and it seem to go through the process of healing but a few days later it opened again. It is a process that has been repeating well into November. The good thing is that yes it is painful but I can still do my daily activities. It just really annoying to have to clean the opening morning and night. Since it is under one of my armpits, I just wear deodorant on the other.
Hi . Thank god I found this post.. thanku all for sharing your stories..
Need some help ..I’m a lactating mother.. for me this started around 3 years ago. until last year I would get a boils which were very painful for 3-4 days , they would open, drain n take around a week to heal leaving a patch or a small scar.
however from last December the bumps after opening , drain for many days and are leaving a hole in the spot and it keeps draining .. I hav like 3-4 pea sized holes in my armpits and 2-3 on my c-section line .. it’s very embarrassing and depressing ..
How do I get these openings closed soon ??
Please help . I want to get better so that I can nurse n take care and b able to play with my little one with lesser pain .. TIA
reading from all this makes me so encourage, been to several doctors as well and my derma gave me bubble rub and a hibiclens to cleans. So far its still there, been on it for 2 yrs now. I was so worried at first I thought my husband was cheating on me and I got it from him lol. but my derma explained it to me so thorough. By the way the doctors have no idea about HS.
I’ve been reading comments on HS for years now but have never posted. Firstly I am grateful to every person out there who has shown their vulnerability and their pain with HS—you helped me when I was at rock bottom because I didn’t feel so isolated. ????Thankyou brave souls.So here is my story with HS. I hope by sharing it someone who was like might find comfort, solace and maybe a few keys to their own remission.
Early 20s- it begins. I’m living out of home. This is the 90s. If you think docs are not clued in now- we’ll ask someone who lived through the 90s. Several factors as I see it contributed to my first groin outbreak. Diet-lifestyle-toxic people and my own drivers of financial stress and uni stress. I essentially went undiagnosed for 20 years. But you cope- like all HS survivors- you find ways to lance, to clean, to hide( ohhhh the hiding- from swimming etc) to self medicate the pain. I am not interested in fat shaming myself or others but I’m trying to give you as much pertinent detail as I think warrants. I had put on weight in my 20s and being in an abusive relationship with myself and the guy I was with at that time didn’t help ( stress factors)
At 33 I met the love of my life and I am incredibly blessed. My husband is the kindest most beautiful man to me. I was so ashamed about it but had to tell him. He just held me and told me I have his support. So…you know the drill with most doctors-acne- maybe use soap (wtf?!?!)
Anyway fast forward to 36 where I had to have a myomectomy to remove a lot of fibroids. (About 1.5kg) I recovered really well but I didn’t get to a chiropractor or discover AIP til 4 years later.
I noticed within 3 weeks that my lesion/boils at the time ( it was humid and hot which never helps) started to reduce. I had had previously open lesions that drain-(the bone tearing painful ones ?)reoccurring every month under boobs and groin—funnily enough around my period.( hormones fluctuations) I experimented with AIP and Keto and found for me fruit had to be really minimal. I had remission for almost a year. No swellings, no double bastard blackheads staring up at me —you know the ones) I felt great. So great I actually forgot I had it.
And then I succumbed slowly-a drink here, a bit of cheese there ( I’d lost 20 kgs which helped reduce any rubbing and overall felt better) I was now approx 65kg- height 172–just to give you an idea.
Fast forward- I’m lying in a bath with a flare up. Uni is stressing me. Of all things I’m finally doing my post Grad in Nutrition Science—it’s hard!!and I’m no longer top of my class. Crying over this and other life events brings on stress snd……HS! I can see that I slipped- I ate comfort food in the shape of chocolate—took remission for granted. But this is not the only thing. I have come to realize that there are a few factors that bring on HS flare ups
1. Stress-linked to my ongoing depression-studies show links to HS. Which one comes first though? It can be mentally crippling but I find fortitude. Like you. I go to the gym 5 days a week. Sometimes I go hard and other days with a flare up I go gentle.
Experiment. Nothing to lose except a flare up. The AIP diet is a good starting point. Honestly.
3. Self love self worth self care
I have a therapist and a chiropractor-essential for me. I’m also doing NET which is about releasing past traumas built up in the body. I try to be king and lovingly to myself. Some days it is hard. But I try. I manage my anxiety with exercise and singing and enjoying nature.
I believe that these three areas are worth exploring—and the self live thing sounds potentially “woo woo” but I mean treating yourself as though YOU are worthy of care snd compassion. Chances are if yr reading this and you’ve HS ( I’m generalizing I know) but I bet you look after others with so much live snd care snd you boost others confidence—but do you do the same to yourself?
It’s a journey- i take 3 steps forward, two back. I fall off my protocol ( my 3 areas of 1. Stress- 2.diet 3 self care)
But I get back up even when it hurts. It may take me a few days too. But don’t give up.
You are beautiful because you are a champion. This inflammatory disease has no known cure but there are more and more articles being published on it—-finally. I am going to keep going with this degree too—I almost wanted to give up today—but I remember why I’m doing it—so I can specifically research and share my findings in the area of auto immune diseases and illnesses.
Anyway thanks for reading this far. I hope you found something of value.
You are worthy of love and healing.
So Glad to find out I am not the only one with this but also sad that we all have to deal with it. I was finally diagnosed last year what it was. I just turned 50 last month. All these years since I was 13 I never knew what was always happening to me and why. It was a relieve to find out. Mine hit peak in my late 20’s to early 30’s. (I had in both armpits and between the thighs.) Then they went away for a decade or so then just came back the last 2 years. I have changed my diet over the years for reasons and now even for HS. For a male the one thing I kind of figured out on my own was the reason they came back this time I believe for me was I started taking testosterone after the Doc suggested cause I was so low and I was fatigued. After I got diagnosed and I researched a bit my self. I took my self of the Testosterone. It definitely helped with boils not being so big but I think I started the clock again as though when I was younger. My Skin Doctor has suggested Humira but I am still skeptical of all the side effects. So still in pain everyday. Some days good and some not. I keep hearing they sometimes just go away after 50. I’m crossing my fingers and also have looked at surgery. I hope this helps anyone else dealing with this horrible disease too.
I have to share something exciting that has recently changed my life and dealing with HS. Antibiotics, creams, warm compresses, baths, tea tree oil, etc. have had zero positive effect on my HS. In fact some of it made it so much worse. I was on the brink of going to the doctor to discuss my surgery options when I started focusing on how addressing inflammation including downloading my genetic code from 23andme and uploading it to sites like SelfDecode that go over your gene variants including the ones for inflammation. It mentioned CBD Oil being good for inflammation and I was excited at the idea of doing something natural and not pharmaceutical to address it. I then found the below clinical trial for CBD Oil as a treatment for HS! I hasn’t started and is based in Isreal so I knew I couldn’t be part of it BUT if you read the details of the trial they mention the specific oil they were going to use and have patients take three times a day for at least 6 weeks. The CBD Oil was called Avidekel and from a high quality, reputable company that focuses on medical-grade, clinically-proven treatment of diseases with CBD. Check out the below link! I live in CA so am lucky that cannabis is legal here and when I went to search how to buy, my local dispensary had it! Not only did they have the oil tincture (mixed with avocado oil) but they also had the oil in a topical cream mixed with soothing oils like shea butter. I decided to get both and address my HS from the inside and outside. I SAW IMPROVEMENT WITHIN ONE DAY. It has now been two weeks and my inflammation is 90% gone. Sinus tracts thickness completely reduced. The soothing topical cream has also noticeably helped with my scarring and any irritating itch, etc. There is still some pain in specific places to the touch so I am committed to patience and process to do a full 6 week plan like the trial. I am also just starting a keto diet.. only eating fish and unsaturated fats, no nightshades and going to up my zinc intake like so many recommend to double down on my plan.
I have had some success with the AIP diet, but I don’t follow it 100%. I really need to stay on that. I am very interested in hearing more about your experience with the CBD oil. I’m in CA. too and wouldn’t mind getting it at the dispensary or online.
I know this is an old post , but I have HS since puberty but I haven’t gotten diagnosed since a couple of months ago , I am now 27. I knew what it was by research but I was always too embarrassed to show anyone , not even a doctor. So far this is our third form of treatment and nothing seems to be working . I am glad I read this post because it gave me hope that I too can have a husband in the future , without feeling the need to hide this condition. I am sure diary , gluten and sugar is the culprit of my flares . I am desperate for some type of relief, so I am going to take the step into going vegan . I drink coffee a lot , so I know that too will have to go . I also want to try zinc , I never know what may work until I give it try right ? Thank you and everyone else for sharing your story. I felt alone for the longest , and felt like I was the only person with this rare chronic skin condition . This made me feel like weight lifted off my shoulder .
Maybe this will help others? My 17 year old daughter has suffered with HS for a few years now, horrible boils in her groin and armpits. We tried everything we could think of, not knowing what it was. Her dermatologist knew what it was immediately, and the only treatment he gave was a cup of bleach in her bath water once a week, and bactroban ointment on the boils. The bleach baths have virtually eliminated the groin outbreaks! But she does have to have them every other day – once a week was not often enough. We are so grateful! The armpit boils still happen, but not as frequently. I am going to try applying tea tree oil based ointment and oral turmeric and zinc as a preventative, thanks to this site.
If anyone has a good HS doctor, maybe you could just say their name and what city, state. If no good, don’t share. We are in San Diego, California, and can’t find anyone.
Chapel Hill, NC Chris Sayed, MD
Durham, NC Tara Jaleel
Winston Salem, NC Rita Pichardo
I am 43 and been suffering and getting misdiagnosed, bullied by Derms and misunderstood by everyone else. I have diagnosed this myself- It has to be.. the only reason I have a 1% doubt is that I have them ALL over my body,. With most of them on my face- not butt or groin areas.
Does anyone else experience them on their faces?
Have you or anyone here experienced new flares while starting the AIP or any other elimination diet? I recently started eliminating sugar, dairy and wheat and I have a new lump 🙁
Is this to be expected during elimination phase?