“So, I have this weird thing…”
That’s how Jaime starts explaining her rare health condition to new people. She then goes on to tell them, “It starts with bumps in the armpit that hurt immensely and swell up like cysts. Then they burst and smell horrible. I can’t help the smell, so please don’t hate me!”
Jaime has Hidradenitis Suppurativa. That’s pronounced hi-drad-uh-NIE-tis sup-yoo-ruh-TEE-vuh in case you’re wondering.
What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa or “HS” is a chronic skin condition characterized by small lumps beneath the skin that are painful and may break open to release a foul-smelling pus. Commonly affected areas include the armpits, groin, buttocks, and breasts. In some cases, “tunnels” form beneath the skin connecting the lumps.
According to the Mayo Clinic, HS is thought to originate in the hair follicles, though the exact cause of its symptoms is unknown. Contributing factors that lead to HS are also unclear.
Sunday, an HS sufferer, describes it like this:
“The flare-ups come on quite suddenly. For instance, on a Monday I might notice something not painful and pea-sized. Tuesday it will be on a Pain Scale 3 (annoying and tender) the size of an almond. Wednesday a pain level of 7 (burning, throbbing, sensitive to any pressure and movement) and the size of a large grape. By Thursday the pain will be excruciating if no drainage has been achieved the swelling may be the size of a walnut in the shell. The pressure is immense and the entire surrounding area by about 3 inches around is intolerable to movement of any kind.
“It is excruciating. This will last an average of three days and, depending on the location, during that time I will find it difficult to shower, brush my hair and teeth, get dressed, use the toilet, and impossible to go to work, cook, do laundry or socialize.”
While Sunday and Jaime describe their Hidradenitis Suppurativa matter-of-factly, it’s sometimes hard for people with HS to talk openly about their condition. That’s why we decided to call on individuals within our community and on social media to share what life with Hidradenitis Suppurativa feels like for them.
Here’s what real people living with Hidradenitis Suppurativa want you to know about it:
1. HS affects daily life in both small and profound ways.
People living with HS often experience chronic pain, mobility issues, limited clothing options, and even social isolation. As a result, everything from small, everyday tasks to important social needs are difficult to accomplish or are left unmet.
“I have limited mobility, and I had to leave my job as a police officer. It is difficult to find clothes because sometimes I may discharge fluids that may seep through clothing.” – Robert
“I am currently a disabled veteran. I have had several surgeries but HS still affects my everyday life. I can’t do any type of activity more than a few hours before the pain and rawness start. I stay in bed mostly.” – Anon
“It changes the way you dress. If you have to wear light clothing the drainage makes it very difficult to do so. You have to have medical wound dressing supplies on standby just in case. It’s important to let your bosses know about it just in case you have to run to an emergency dermatologist appointment, and that can be hard until you accept things.” – Rob
“It’s difficult. My everyday activities are limited (such as holding my child up above my head, holding up my arm to change a lightbulb or to get a box, etc.) and sometimes I’m completely unable to complete those tasks, or even manage to get out of bed.” – Jade Ivy
“All daily activities have to be scheduled around dressing changes. Most of my daily life is spent going to appointments or staying in my house so I don’t share my odors with others.” – Robbie
“On a daily basis I’m challenged to make it through a workday without breaking down in tears from the pain I’m trying to hide.” – Sunday
“Living with HS makes everyday tasks difficult. From sweeping the floor to putting on clothes or just moving around is unbearable at times. [There is] constant pain and no relief. That’s just the physical problems. Mentally you’re wondering what you did wrong.” – ShaRonda
2. HS can be an isolating and lonely condition.
Open, leaking wounds are not only painful and uncomfortable, but they often create a barrier between people with HS and the people around them. Many with HS not only struggle to live a normal life, but they do it in isolation.
“I don’t go out of my home unless it’s to go to doctors’ appointments. Many times when family comes over I retreat to my room so I don’t have to put on more clothes making me uncomfortable.” – Robert
“Not knowing others with the condition isolates the way you think sometimes because you can’t relate to anyone and they won’t understand how it affects you.” – Rob
“Living with this disease makes it extremely difficult to be open and vulnerable to [new] individuals as you never know how they are going to react to your skin condition. So you isolate yourself or only deal with those who know you very deeply in person. It’s hard to engage in new relationships [because] the fear of someone seeing you as disgusting always looms over your head.” – Sabrina
” [I have] to worry about my social life. I’m still very young and it’s hurtful to see friends out having so much fun and not [being] able to because I’m recovering from surgery or a lump is growing in size by the second and I can barely walk or move my arm. It truly affects me in every way possible.” – Aaliyah
3. Hidradenitis Suppurativa can lead to depression and anxiety.
Living with the chronic pain and isolation that go hand-in-hand with HS is a tremendous burden. Naturally, many with HS report feelings of depression and anxiety, which if left untreated, can further affect your health and wellbeing. When people feel depressed or anxious, they tend to look for ways to combat this so they can get some relief from these emotions. But what does it feel like living with HS whilst feeling depressed and anxious?
“It’s depressing. You feel alone, people offer help and, though they mean well, it means nothing to you as it is no help.” – Jade Ivy
“I’m very depressed, anxious, frustrated, and hopeless [because] there is no cure, [and] there is nothing I can do about it.” – Robbie
“It’s a constant fight because you don’t know what you want out of life anymore. You want relationships but are scared this condition or disease will run people off. You literally have to fight yourself not to fall into depression. You have to have a strong faith in God to survive this illness; even then you still have trying days and times.” – ShaRonda
4. Having supportive friends, family and coworkers makes a huge difference for HS patients
When a life is devastatingly altered by chronic pain and illness, the support one receives from friends and family is all but essential. While some with HS find the support they need, many more have messages for the people in their lives:
“I am blessed with a small supportive group of close friends and family that understand.” – Sunday
“I wish that others really knew that this disease is not because I have bad hygiene practices. It is because of the way my body functions. Also, I wish that they knew that my scars were a sign of healing and not seeing me as someone who is disgusting.” – Sabrina
“I have home health and family/friends come in every day for bandage changes and cleaning. I have areas set up in bathroom and bedroom with medical supplies for these people to use.” – Robbie
“I want them to understand that I don’t go out or walk a lot because [of my HS]. I’m not lazy like they think. It’s difficult for me and I become discouraged from their comments, so I find it easier just to stay home. It sucks because before [my HS] got worse I used to be a very outgoing guy.” – Robert
“I wish they knew I’m glad it’s me and not them because I would not want this for anyone. I would not want to see them suffering. I want them to know there are days that I just can’t suit up and show up for life. I don’t know what prevents it. I don’t know what triggers it. I am doing the best I can.” – Sunday
“I’m sure there are thousands just like me who have kept HS a secret. I wish this disease were better known, and had the same public information given out that famous diseases, such as cancer, are given. With the help of a very knowledgeable dermatologist I was able to get my life back.” – Lou
Self-care tips for those living with Hidradenitis Suppurativa
Good self-care is a challenge for many people and it can be especially challenging for those with Hidradenitis Suppurativa. It can also be an important part of the healing and prevention process. Self-care is unique for everyone. Below are some ideas from the people who shared with us:
“Meditation, and see doctors!” – Anon
“Search for online resources and social media groups to give you advice and suggestions for living with HS.” – Pedro
“Try change of diet and warm compresses.” – Robert
“Always keep the wounds protected. [Take] hot showers.” – Anon
“Find ways to get comfortable. HS robs you of your ability to be comfortable while you are going about your day to day life.” – Anon
“Find a good dermatologist and to be patient.” – Anon
“Tea tree oil products help with healing. Drink Noni juice.” – Anon
“Stay clean, not because it gets worse based on hygiene, but because it does make you feel better. Baby wipes and witch hazel are a blessing. Vicks helps the pain. Don’t stress over the little things in life because that makes it worse. Stress always makes it worse.” – Jade Ivy
“Keep the affected areas clean and dry. Stay strong.” – Corrin
“Honestly, trial and error is the only thing that works. What works for others may not work for you. Research the condition for yourself and don’t be afraid to tell the doctor, ‘no,’ to some treatments. I’ve learned some treatments were not for me. Re-evaluate your eating habits, exercise habits and stress. These things will work against this condition sometimes.” – ShaRonda
“Laugh often and love yourself as much as you can. This is a disease that you did not bring on yourself and thus it is not your fault. Also, do you very best to open up to those who are closest to you so that they can begin to truly understand more about this disease and how [it] affects you. Be sure to go out at least twice a month to do something fun for yourself even if it’s as simple as walking through the park.” – Sabrina
I was diagnosed with HS 10 years ago. I used to have to take a vicodin or percocet just to take a shower. I would carry a change of underwear bc I would soak thru them while at work. Every morning I would have my friend at work smell me to make sure I was not smelly. The pain was unbearable. Not to mention the itching. Omg the itching would wake me up in the middle of the night and I’d have to damn near scald my skin for relief. After years of being told I have to live with it for life or nothing can be done, God sent me an angel. His name is Michael Lohan. Cooper (a burn plastic surgeon in Staten Island,NY) who said he could help me. The thought of surgery scared the hell out of me but what’s the alternative? And I had 2 friends who had the surgery and were symptom free. I started my surgeries in 1/2013 and it is now 11/2016, I am not completely free of abscesses but I am completely free of the constant draining of pus and blood. Where Dr Cooper did the skin grafts, it has not returned not even once. Now I am considered a unique case according to my dermatologist bc of how severe my case was. Dr Cooper had to do extensive surgery on me ie: redid my entire private area, cut off the bottom of my stomach etc. But like I said, it has not returned in any of those areas and I no longer draining. The surgeries changed my life. Although of course I have scarring and still get cysts in some places, it is NOTHING like b4. Dr Cooper once asked me if I knew then what I know now would I still have gone thru with the surgeries, my answer was and still is…..in a heartbeat. Cooper is an AMAZING doctor. Very caring and sympathetic to his patients and he listens. He’s also a perfectionist so if he operates, he’s going to do a damn good job on you. Doctors who have seen me before and now say he’s an artist. I can’t even describe how God awful this disease is but I do know it’s not a good way to live. No one should ever be in that much pain ever and unless you’ve experienced it personally you just cannot understand. But I have and if you can’t get here to Dr Cooper, please find you someone who can do the surgery for you (not a general surgeon).
Correction Dr Michael Leslie Cooper not Lohan.
I’m only 26 and I noticed the lumps when I was 15, but my mother, who was an RN, thought they were just pimples. Since 2011 I’ve seen over 20 doctors and taken over 100s of medications! Nothing helps and today I had one that was as big as a golf ball in my groin bust and bleed all over me in the middle of a store!!!! I’m finally going to see a specialist in January to try the injections. I wish I could talk to someone who can help me!!
I have gone to urgent care for these a couple of times. I was told they were just boils. My primary said that because my diabetes was out of control that my body was a petri dish and grows the cyst. I am so amazed to find out that this is actually a disease. Stress totally flares these up for me, they will appear within hours. I get them mostly under my breasts and in the crease of my legs near my pubic bone. There is one spot that just keeps returning and returning and returning. All I have known to do is soak them until they burst but sometimes I have to help them along because I just can’t take the sensitivity anymore. Luckily I do not work outside the house I don’t know what I would do if I did.
I was just diagnosed in 2016, but have had this going on for over 10 years. I’ve been taking Humira for them. It doesn’t fix the problem, it just makes them appear less frequently.
In my early 20’s, I could no longer dress myself for work. My mother helped me into my clothes as I could not raise my arms due to HS. At 24, I had two major armpit surgeries that removed the sweat glands and cleaned up the area. Badly scarred but nothing of any size has ever returned to these two sites. The following year, I had three surgeries on my pelvic area. Unfortunately not as successful. But I had considerable improvement after the surgeries but flare ups continue and sometimes require medical intervention to drain. Menopause also retriggered the HS as well but has since mellowed out a bit. I am trying to see a new dermatologist as I sense some serious changes happening (tunnelling) and hopefully things will improve. I love the warmer water as I find soaking in the ocean helps a lot!
I am a stage 3 and have been dealing with HS for over 25 years the pain is unbearable at times. I have it on my head and everywhere on my lower body i have had 7 surgeries and everyday is still a battle If it wasn’t for my wife and Kids I probably would have already punched the timeclock
Hiii, I’m 20 years old. I’ve been dealing with HS since I was like 12. The thought of surgery scares the absolute shit out of me and it doesn’t even take the HS away.. but I have found out the correlation of eating nightshades and my HS flare ups.. since I try to monitor by eating and since giving up all things classifed as night shades such as tomatoes, potatoes, tomatillos, curry, peppers, I’ve noticed that flare ups don’t happen and I’ve read other articles about others suffering with HS that have cut out nightshades and they went into remission. So I’d definitely suggest stop eating nightshades and see if you can tell a difference bc I definitely can..
I have HS . I have had it since I was 12 and now I am 40 . My Husband also has HS . WE both did not even know eachother had it or what it was when we met . I was diagnosed at age 23 . Before that I was in stage 1 so it was not so bad , even though it was painful . I am inthe final stage now and I am covered . I have over 300 inside my legs and 30 in one armpit and 15 in the other and they come and go . I just had my 3rd surgery in two months . I am finding surgery actually helps mine though . The most I can say is not to squeeze them , they get worse if you do . hot compresses and an I and D if needed for pressure is best . I have found the only pain releif I get is from surgery or pain meds like percocet or hydrocodone . I cannot take Nsaids and acetametphin is not enough . The pain is horrendous and I have lupus and double sided migraines as well as suicide headache TMJ . Pray they find a cure for this .
I am almost 29 and i have been living with hs since I was almost 12. It burns it throbs I can feel it going down my arm and a little on my back and by my boobs. I can’t function right, I can’t even hold my 8 month old baby,do everydayhousehold things or nothing. I get no relief at all and only thing that kinda helps are percocets and that’s until they wear off. My pain is horrible and I just want to cry, but I can’t u have 5 daughters who see me in pain all the time. It never goes away for me and no doctor or nothing has helped me. I just want to feel no pressure pain anymore. Help me please!
Hello my name is Daakeia and have been suffering with hs for years as well this reply is for Lisa I know it is about 9months later since you posted your experience and treatment for hs with surgery I’m hoping you to ask you some questions about your surgery with Dr Cooper seeing that I live in new York and desperately need help with the condition I really identify will your comment hope this reaches you and I get a response
I have had hs since I was 9/10… I finally got diagnosed in 2013.. I’m currently having an off day and couldn’t get my son to school because I can’t get dressed, don’t want to move as everything is hurting at once… I shed tears at the comment about punching the timeclock out.. I have said many times to my family, if I did not have a child, I wouldn’t be here suffering in this body now. We are everyday warriors, and though not many people understand, they do sympathise. Sometimes that’s not enough for me. My soul feels trapped in a body that cannot live right. I just want to sleep and wake up when they’ve found a cure.. we are stronger than we think…
I have had HS from the age of 12. I’m 55 now. I want diagnosed until the age of 40. I’ve had flare-ups from head to my toes. At around the age of 16 it got so bad that I could barely move and I smell horrible. I isolated gained weight and drank myself into an alcoholic drug addict. I find looking back the alcohol and the narcotics made it worse. At the age of 33 I stopped the alcohol and drugs. It got better for awhile but returned with a vengeance. At the age of 40 I had surgery in both armpits and started with the drugs and alcohol again. Since the surgery (knock on wood) I haven’t had any flare up in my armpits. My groin and rear end picked up the slack where my prayers left off. At the age of 42 the pain, the alcohol and drugs left me no choice but suicide. Thankfully God and AA stepped in and saved my life. Today, sober over thirteen years, I still have to deal with HS everyday. My flare-ups have decrease. I’m covered with scares that leak all the time. Sitting is still very difficult. I have found that a short dose of prendisone stops flare-ups from getting out of control. By the grace of God and AA I have learned to accept the cards I have been delt and am reasonable happy. I hope this helps some else out there. Keep the faith and never give up. Jim
I have been suffering from this debilitating disease for 20 years and I have been told by many experts at the Mayo Clinic, John’s Hopkins and Vanderbilt Medical center that I have the worse case that has ever been documented. I first started to notice what I thought was body acne when I was 13 years old. I was so embarrassed by it that I hid it until I became deathly ill at 19. I was hospitalized and found that I had gone into septic shock and had developed necrosis (tissue death) in both of my armpits. I went into emergency surgery to have skin grafting in my armpits and 60 incisions in my groin. Since that first surgery, I’ve had an additional 18 surgeries that included more skin grafting. Unfortunately my disease is still very active. But the best piece of advice I can give anyone who suffers from any misunderstood disease is this: embrace it. This is your life and the only power you have over this disease is that you don’t let it affect anything other than your skin. Be proud, educate those around you and never allow yourself to have a pitty party. If you stand strong always, you’ll be just fine. Because at the end of the day what other choice do we have other than to live with it? Hopes this helps
Probably to late to matter due to the old threads but oh well. I have what i call the plague (level 2-3) since 16 and im 36 now, so it has been good times sarcastically speaking: been on 1000’s of meds, acutaine for years straight (worked great for acne TERRIBLE for HS makes it worse), skin allergy tests, experiment this experiments that, etc.etc.etc.etc. Not willing take poison Humira
NOW ON A VERY POSITIVE NOTE. I HAVE THE BEST NON_INVASIVE TREATMENT NOT CURE (we need more stem-cell study for that; aiaint happening in my lifetime)
I wanted to pay it forward with no BS sales or anything. Just because I know the hell it is and have thought multiple time in the past about dining on a .45acp. First off, if you can get approved (I advocated like hell for and was) the Alexadriate laser hair removal devise (not some salon hair removal but a LEGIT absurdly expensive medical devise. My theory in past that was actually listen to by one awesome doctor hairs dont equal HS but they sure make it worse no hair there not as bad of a problem. The laser works escpecially well in areas that have not been bombed and dpleated yet but still works good all over.
Secondly, the biggest one which you’ll say BS but Sh.. you not: Yeast and Dairy subtract them from you life 150%. Look on labels because yeast is put in every where and is the most difficult : vinegar (in everything) grapes grow white coating need vegetable wash that yeast, too many sugary items mix with other stuff fermenting in stomach, you’ll hate this NO ALCOHOL). If you read the labels and really do this serious for a year: the majority if not all of the plague aka HS will be gone, not cured because you go back to eating those thing boom with the quickness).
Third, very obvious if you smoke cigarettes then stop!! Exercise, lose weight, blah, blah, blah. You already know this.
Future we will see (Big Phara meds stacking cash on this one): Chemicals that activate 5HT2A receptor that dont get you high like DOM, Lucy, etc. Because activation of the 5HT2A receptor stops TNF-Alpha swelling (TNF-Alpha is our enemy among faulty chromosome 6). Dont know why this is and dont care. Please dont take LSD everyday, great as it is; it is not good for you to do drugs everyday. I hope this is helpful and finds its way to a person in need; have love and spread the good word!! Hang in there keep your head up.
Savage
Recommend you give no yeast no dairy a try for a year and I mean NONE. Alcohol= yeast hard or soft doesn’t matter HS will get worse. Read investigate labels to make sure NONE. Hang in there brother.
Ive been seeing dermatologists for 7 years now and have taken sooo many medications i cant even remember! Id never heard of this until today and will still have to see a dr for a diagnosis/confirmation but i am almost positive this is what i have….its such an overwhelming feeling of relief to actually learn what this is and that it is a real disease! Ive gotten nothing but “i dont knows” and “must be weird/bad strain of eczema” for so many years sometimes i just feel like im crazy! Im curious though…does anyone else get outbreaks on their neck and/or face? (typically milder than the ones in other places like inner thigh/armpits/chest/boobs/etc. But still pretty miserable…especially being so visible) mine tend to happen when i get an outbreak somewhere else and especially when im over stressed and/or dont get enough sleep. They usually start on my neck or somewhere on my face that has a little hair like my upper lip or where my upper lip n cheek meet (and i have that annoying invisible ish hair lol)…another spot on my face ill get a flareup is around my eyebrow hairs and sometimes my hairline and even behind my ears. Its the same cycle i experience with my other outbreaks (most frequently for me other spots are inner thighs, chest, boobs, arms/hands, and armpits) of a tiny bump swelling up to a lump (often pus filled but with the kind i have in my other spots, not normal pimple like type of pus) or turning into a super hard bump that is painful and itchy and wont go away for weeks or months unless i do something like drain it or do an intense peel to try n get it out (usually only makes it worse though)…ive found draining salves to be an absolute life saver for bad episodes and always keeping moisturized is important for helping to prevent or minimize mine sometimes and ive found jasmine oil to be really helpful as well. But nothing stops or prevents them. And once i get one it typically grows into several in the area 🙁 they always happen in the EXACT same spots too! I know that seems crazy to be so sure of but its true…i dont just mean same area or same small location….they always come back in exactly the same spot. The same pore or whatever lol. I struggle with nad episodes that happen on my thighs and chest too and at this point ive just accepted all the pains that comes with this condition…but i really struggle emotionally dealing with flareups that spread to my face n neck..cant really hide those if im forced into public, at least long pants/sleeves/high cut shirts can help hide everywhere else if i need to be around people. But yea i was just curious if anyone else has this sometimes spread to their face/neck too?
Drawing salves*
I previously put a comment to be helpful to others but for some reason was not posted. So I’ll give it one more try I am a male who has HS tried all the novel antibiotics Accutane you name it done it. To cut to the chase after 20 + years having it there’s no getting rid of it until stem cell research is perfected and we can alter chromosomes. In other words I’ll be dead long before that. But there is still good news: what will make it better at least in my opinion and my experience is the normal things that people know like no smoking, do meditation not stress out, stay clean, wear proper fitting clothing, keep wait in appropriate number, limit simple sugars that will turn into yeast in your body e t c.
On top of that I have always had the theory that hair follicles weren’t not necessarily the root of the evil but sure made it worse. I unfairly lost my health insurance recently but prior to that I advocated for and received Alexandrite laser hair removal is what I think it’s called. This is not some cheap salon type hair removal tool. Rather it is a uber-expensive Medical Hair Removal that zaps you and then spray some cold mist microseconds before. My experience the place that receives hair removal mult treatments, HS was not even a quarter as bad. Also the good news is it should be covered because medical insurance would rather pay for that lasting a long time every couple months then Humira every day Highly highly recommended. The other thing I noticed out of recommendation from my dad reading an article from a doctor that did a small study with his HS patients was that yeast the Brewers kind can’t remember the name Candide or something like that will make HS get way worse in my experience. Hard to avoid because our bodies make it grows on fruit, there in ketchup in vinegar in all kinds of stuff without telling you, but if you try to limit it as much as possible it will also help. Hang in there
Brent
Humira is working for me. Ask your Dr. about it. More and more evidence this is an autoimmune disease. Also try following a ketogenic or paleo diet. I’m stage 3 (in remission pretty much, thanks to Humira) and have had HS for 30 years, starting when I was 12. Best of luck. We are all survivors!!!
Hi! I’ve been suffering with HS since about 12 yrs old and I’m 29 now. I’ve only had one surgery so far and I have multiple scars. Tumeric pills seem to help a lot if I take it as soon as i feel a flare-up starting, sometimes they just become inactive and it’s glorious. However, I have been dealing with constant flare ups for a while now and I feel so hopeless. I haven’t been catching them in time. It also helps tremendously if I go to my dermatologist and get a cortisone injection into the affected area. Sometimes they come to a head and sometimes they just break up and go away all in the same day. The injections in the armpits are the most painful. I see stars and almost pass out. That’s where I have a flare-up right now and I’m hesitant to go because It hurts so bad. My whole body is achy.. I left work early today and dread going tomorrow. It hurts to just stand. I’m so over this disease and it’s really hard when the ppl around you just have no idea what it feels like. It’s really comforting to know that there’s others who go through this too and to not feel so alone. Thanks everyone for your advice and hope!
Hi Jessie,
Thank you for sharing your story and being a part of the Health Stories Project community. If you are interested, we have an opportunity for Hidradenitis Suppurativa patients. click here to see if you qualify!
Been suffering with this terrible affliction for over 20 years. One surgery on my armpits in 2010, lasted without flare ups until 2017 and then it returned unfortunately. But then i found medical grade manuka honey and it changes everything! Not a cure but it draws out all the painful infection within a 24 hour period so you can at least be pain free. Manukamed.com is a great place for medical grade supplies. Im currently exploring the possibility of having celiacs. Im reading that there is some science supporting a correlation between celiacs and hs. I hope this helps anyone!
look into photodynamic light therepy, and non-ablative co2 laser treatments. those put me in remission for 2 year (so it’s not permenent you have to do maintenance treatments and it’s not covered by insurance and pricey) also, start learning about chronic/systematic inflammation and how to reduce it (diet, exercise, natural food/herb based anti-inflammatory supplements daily and anti-inflammatory prescriptions [NOT antibiotics if you can avoid it!] when a flare is really bad), in my experience surgery does not work, they come back right around or through the scars, and antibiotics cause more damage than good in the long term so try your best to only use them in severe cases, and only for a short term followed by a nice course or PRObitotics to rebalance your gut. An imbalanced gut leads to hormonal imbalances (hello fibroids, melasma, estrogen-based illnesses) and more inflammation, which all lead to more flareups in the long term. short story, fight chronic systematic inflammation as HS (and auto immune symptoms in general) are the result of systematic inflammation (you can’t feel it or see it you just feel normal, but it’s there). that’s at the root, everything else is just a symptom of that. I have had this for 24 years now, and have researched it extensively and tried everything. twice. and ^^^ this ^^^ is where all that has led me. Doctors’ try, but too many are not educated about this and you just end up chasing your tail.
Nothing worked for me after suffering for over 20 years. Antibiotics failed me. Humira didn’t work. Dietary changes and weight loss did nothing. Eventually, I tried a cap full of bleach in bath water once a week. Now, once a month. Seems to have helped almost completely clear it up. I have trillions of clogged pores but they never get to cyst or abcess size anymore. I’m terribly scarred but I haven’t had a painful flare-up in a year.
I’ve been dealing with HS since I was about 12, am 37 now, it is such a difficult disease to manage but it can be managed and we can have a good life! So many different treatments over the years, some have helped, some have not. Multiple surgeries and trips to the hospital. AM currently on Amgevita to control the inflammation and using Hidrawear to manage the drainage. Ice packs every night on my thighs and warm compresses when I need to bring them to a head. lots of salt baths too and pain relief when I need it.
I Have HS And Was Battling With Outbreaks For 40 Years. I Found My Triggers, Foods I Have Sensitivity To. Chocolate, Tomato Sauce, Cheese, Peanuts. Garlic, Season Salt. And Especially Sugar. When I Stay Away From These Foods, I Don’t Have an Outbreak. Of Course I Lost Weight Too, Which I Think Helps.
I found curehs.com They are dedicated to hidradenitis suppurativa treatment and resources. There staff is helpful but they do try to sell you medicated bandages that are really expensive but apparently work wonders. Insurance pays for it so I guess it really doesn’t matter. Hope this helps someone suffering with HS.