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.
Does an anti inflammatory diet help HS? ›
Overall, following a healthy diet rich in anti-inflammatory foods and low in processed foods is likely to benefit people with hidradenitis suppurativa.What autoimmune disease causes HS? ›
Hidradenitis suppurativa (HS) is a chronic inflammatory condition characterized by recurrent swollen, deep, and painful abscesses. Several autoimmune conditions have been shown to be associated with HS including inflammatory bowel disease and spondyloarthropathies.How I cured my hidradenitis suppurativa? ›
There's no known cure for HS, but treatment can help prevent flare-ups and stop disease progression. There are many options for treating HS naturally, including making dietary changes, supplementing with turmeric and zinc, taking Epsom salt baths, and making lifestyle changes such as quitting smoking, among more.Can leaky gut cause hidradenitis suppurativa? ›
Hidradenitis Suppurativa is an auto-inflammatory/ autoimmune disease. The root of the cause is inflammation. This inflammation can be caused by a leaky gut, an inflammatory diet, poor digestion, and an impaired ability of the body to detox properly (root causes vary).Is HS an autoimmune disease? ›
While studying HS, researchers have found some evidence that HS might be an autoimmune disease. People with HS develop antibodies. This finding alone doesn't mean that HS is an autoimmune disease. The body naturally releases antibodies to destroy bacteria, viruses, and other invaders that shouldn't be inside the body.What vitamin is good for HS? ›
Vitamins, minerals, and supplements with the most reported literature for positive clinical effects in HS include zinc, vitamin D, and turmeric/curcumin. Preliminary evidence supports the use of Zinc in HS. Zinc has been reported in several studies to significantly decrease disease severity.What is the root cause of HS? ›
The lumps in HS form because of blockages of the hair follicles. The blocked hair follicles trap bacteria, which leads to inflammation and rupture. In most cases, the cause of the blockages is unknown. Genetics, environment, and hormonal factors may play a role.What gene causes hidradenitis suppurativa? ›
Genetic factors clearly play a role in causing hidradenitis suppurativa. Some cases have been found to result from variants (also known as mutations) in the NCSTN, PSEN1, or PSENEN gene. The proteins produced from these genes are all components of a complex called gamma- (g -) secretase.What causes hidradenitis flare-ups? ›
Hidradenitis suppurativa develops when hair follicles become blocked. The exact cause for this isn't known. Experts think it could be connected to hormones, genetic predisposition, cigarette smoking or excess weight.How much zinc should I take for hidradenitis? ›
Zinc salts have been used for a long time in the treatment of mild and moder- ate acne, and the usual dosage is between 30 and 60 mg of zinc metal per day (corresponding to 2 capsules of 15 mg zinc gluconate per day in France) [5, 6] .
How do I add HS to remission? ›
Surgery and Laser Treatments
In milder cases, removing hair from the armpits and groin can reduce your HS to the point of remission. In more serious cases, surgery may be the only way to control the pain and suffering when you have many tunnels.
HS is a lifelong disease. As time goes on more research is being done and more treatments are becoming available but still no cure. If caught early, symptoms can be managed more effectively and it may stop the disease progressing to irreversible skin damage.Does AIP diet work for HS? ›
The Autoimmune Diet
The AIP diet proposes a very thorough elimination diet, wherein foods that contribute to leaky gut are removed and the gut lining has time to heal. This in turn will reduce inflammation in the body and reduce your hidradenitis suppurativa symptoms.
Diet alone won't cure the condition, but what you eat can help reduce inflammation and ease HS symptoms. If you have hidradenitis suppurativa (HS), a chronic skin condition that causes painful lumps and scarring, anything that can help your symptoms — even a little bit — can come as a relief.Do probiotics help with hidradenitis? ›
While further evidence is required, our research suggests that dietary alteration and personalized probiotic supplementation might also be beneficial for HS patients, particularly since treatment options are limited for these individuals.”What diseases are linked to HS? ›
6 Health Conditions Related to Hidradenitis Suppurativa
- Metabolic syndrome. ...
- Axial spondyloarthritis. ...
- Inflammatory bowel disease. ...
- Cardiovascular-related death. ...
- Depression, anxiety, and suicide risk. ...
- Sexual dysfunction.
Previous microbiological studies found a wide range of bacteria sporadically associated with HS lesions: Staphylococcus aureus, Streptococcus agalactiae, coagulase-negative staphylococci, milleri group streptococci, anaerobes, and corynebacteria (6–8).Do people with HS qualify for disability? ›
For Hidradenitis Suppurativa to be considered a disability, the symptoms must be severe enough to keep you out of work for twelve months or longer. If you are able to continue working, you will not be able to qualify for disability benefits.Does B12 help with hidradenitis suppurativa? ›
Vitamin B12: Studies have shown a correlation between vitamin B12 intake and fewer hidradenitis suppurativa symptoms, but more research is needed to determine why this might be the case.Does B12 help with HS? ›
Included articles in this systematic review reveal that low serum zinc and vitamin D levels are associated with increased lesion count in HS. Supplementation of zinc, vitamin D, vitamin B12, or exclusion of dairy or brewer's yeast can be effective in partial or complete lesion resolution.
Does apple cider vinegar help with hidradenitis suppurativa? ›
Apple cider vinegar might not do much to treat flare-ups directly, but it may prevent bacterial infections from developing. Put a small amount of apple cider vinegar on a cotton pad and apply it to the affected area. You can leave it on and let it soak into your skin.Can you stop HS from progressing? ›
Patients who quit smoking or lose extra weight can have fewer HS flare-ups (and sometimes get rid of) hidradenitis suppurativa. If you are overweight, lose weight. For many patients who are overweight and have HS, losing weight can reduce flare-ups and prevent HS from worsening.Does HS cause a weakened immune system? ›
For people with HS, their immune system is over-active, not defective. Sometimes people with HS think their immune system is under-active because they get what look like infections, but the HS lesions are inflammation, not infection.Why do I keep getting HS? ›
The exact cause of hidradenitis suppurativa is unknown, but the lumps develop as a result of blocked hair follicles. Smoking and obesity are both strongly associated with hidradenitis suppurativa, and if you're obese and/or smoke it will make your symptoms worse.Can people with HS have kids? ›
Fertility. Women with HS may find it hard to get pregnant. HS has been linked with irregular menstruation and infertility.Are you born with HS? ›
People are never born with Hidradenitis suppurativa (HS). Most people develop HS between the age of puberty and 40 years. It is almost rare for HS to begin before puberty. The exact cause of HS is unknown.Where is HS most common? ›
You usually get hidradenitis suppurativa (HS) on parts of the body where skin touches skin like in the armpits or inner thighs.How do you calm HS flares? ›
Like encouraging a zit to come to a head, putting warm compresses on your HS abscesses can get them to drain faster, says Dr. Sayed. And the faster they drain, the faster they go away. Cold therapy can help, too, and it can be even more effective when combined with heat.How can I prevent my HS from getting worse? ›
- Get to a healthy weight. HS is closely tied to obesity. ...
- Quit smoking.
- Stay cool. Your HS may get worse in the summer, when heat and sweat can trigger a flare-up. ...
- Don't shave near a breakout. If your razor irritates your skin, laser hair removal may be a better choice.
- Watch what you eat.
Conclusions: Our study underlines the importance of the evaluation of metabolic profile in patients with HS. Moreover, it suggests that the supplementation of MI, folic acid and liposomal magnesium in HS can improve the efficacy of concomitant therapies and the metabolic profile.
Does Epsom salt baths help with hidradenitis suppurativa? ›
But, Pichardo says, “An Epsom salt bath can help dry the pus coming from HS lesions, and it will help overall with inflammation.” How to use it: Create a bath soak by adding about one and a quarter cups of Epsom salts to a full tub of water.
They concluded that more research was needed. All in all, the studies tell us that there's no academic evidence for the role of caffeine in HS.Does fasting help HS? ›
Among the possible treatments, dietary interventions, such as fasting, have been described to positively impact on HS.What soap is best for hidradenitis suppurativa? ›
When you shower, use a soap-free wash like Cetaphil. Gentle cleansers that are fragrance-free, dye-free, and soap-free are your best bet for preventing further skin irritation.Does HS always progress to Stage 3? ›
Your HS may progress from stage I to III, but that's not always the case. “There are many people who remain in stage I for the duration of their HS,” Dr. Shanmugam says. Wherever you are at the moment, there are ways to take at least some of the care into your own hands.How long do people with HS live? ›
The mean age at death was lower in individuals with HS than in controls (60.5 years vs 71.1 years in people with psoriasis and 75.2 years in people with nevi). The most common cause of death in the HS group was disease of the circulatory system.Does HS go away with weight loss? ›
Among those who had lost weight, the number of individuals reporting HS symptoms decreased by 35%. The study also showed that there were fewer areas of boils and skin lesions in the group of people who lost weight. In addition, those who lost 15% or more of their body weight got the most relief from their HS symptoms.How long does it take to feel better on AIP diet? ›
Generally speaking, your body will begin to reduce the number of antibodies produced to a food antigen within four weeks of last exposure. That means four weeks is the minimum amount of time needed for you to see a clear reduction in symptoms, although you may begin to experience relief a lot sooner.Is HS an auto inflammatory disease? ›
Is HS an autoimmune or autoinflammatory disease? HS is better described as autoinflammatory because your own cells are attacking each other ('auto-') and the cells are from the immune system, causing inflammation ('-inflammatory').Does an anti-inflammatory diet help HS? ›
Overall, following a healthy diet rich in anti-inflammatory foods and low in processed foods is likely to benefit people with hidradenitis suppurativa.
Will HS ever be cured? ›
Although HS cannot be cured, your dermatologist can create a treatment plan to control the disease and lessen your symptoms. Treatment can: Reduce flare-ups. Heal wounds.Does Metformin help with hidradenitis suppurativa? ›
Conclusion: Metformin is an effective, well tolerated and inexpensive treatment that represents a viable treatment option for HS. Key message: Metformin is an effective; well tolerated and inexpensive treatment in the management of HS.Do anti inflammatories help hidradenitis? ›
At-home pain relief
Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen can ease pain and inflammation associated with HS. Numbing ointments, such as lidocaine, may also help with the discomfort of breakouts.
- Warm compress. A warm compress can immediately reduce pain in the affected area. ...
- Turmeric. Turmeric has strong anti-inflammatory, antimicrobial, and antibacterial properties . ...
- Honey. ...
- Tea tree oil.
- Aloe vera. ...
- Rubbing alcohol. ...
- Zinc. ...
- Neem oil.
Dairy products such as cow's milk, cheese, cottage cheese, buttermilk, and butter: These food items contain lots of saturated fats, resulting in inflammation. They can also increase certain hormone levels that may cause HS. Studies have reported that people who had a dairy-free diet had fewer HS flare-ups.Can zinc help hidradenitis? ›
Three studies assessed the effect of oral zinc supplementation in adults with hidradenitis suppurativa. Hessam and colleagues found a significant decrease in disease severity, erythema and number of inflammatory nodules.Can you get disability for hidradenitis? ›
For Hidradenitis Suppurativa to be considered a disability, the symptoms must be severe enough to keep you out of work for twelve months or longer. If you are able to continue working, you will not be able to qualify for disability benefits.Can I get disability for chronic hidradenitis? ›
The SSA recognizes hidradenitis suppurativa as a disability under the list of Skin Conditions. However, qualifying for Social Security Disability benefits isn't as simple as just having the medical condition.What is the root cause of hidradenitis suppurativa? ›
Hidradenitis suppurativa develops when hair follicles become blocked. The exact cause for this isn't known. Experts think it could be connected to hormones, genetic predisposition, cigarette smoking or excess weight.What drains from hidradenitis suppurativa? ›
These are small early pus-filled and non-pus filled lesions. In hidradenitis suppurativa, there can be scarring and color changes seen from prior skin inflammation. This person with hidradenitis suppurativa has a draining sinus. The armpit is a typical site of involvement.
Do probiotics help hidradenitis suppurativa? ›
While further evidence is required, our research suggests that dietary alteration and personalized probiotic supplementation might also be beneficial for HS patients, particularly since treatment options are limited for these individuals.”Can you go into remission with HS? ›
For many people, HS is a life-long disease. Four out every 10 people with HS achieve remission, meaning a reduction or disappearance of symptoms. Remission is less likely in people who smoke or are obese. For more than half of people with HS, the disease has a negative effect on how they live.