Any other Hidradenitis Suppurativa sufferers out there?

One thing that REALLY helped me was cutting out refined sugar. If i HAD to sweeten something like my tea i would only use raw sugar. I haven't had a boil in my arm for about a month now. I kinda caved in at some point and started drinking a lot of kool-aid that had a lot of white sugar in it, after that i got a really bad boil on my groin so im guessing that it definitley had to do with the sugar. Im gonna try a detox tea this week because i heard that can really help to.

I was diagnosed over 22 years ago and I also "quit" sugar and refined carbs about 12-15 years ago. I have been in remission since. I have flare ups when I consume to much processed/sugary food, I have recently gone gluten free as well. (almost two months) for other health reasons.

Exercise also helps and keeping my blood sugar stable in general.

I think I have this too...can't wait till I have more time to go through all these posts..

I too have HS. long suspected and finally confirmed by a dermatolgists who had little in the way of hope for me. My eyebrow wax lady of all people suggested I go gluten free (to reduce inflammation) its been 4 weeks and I've had a TREMENDOUS improvement.
In adapting to GF I quit most sugar, junk carbs, and all fast food. I have noted in the past tomatoes, peppers, and chili/black beans cause flareups. Abscess formation and duration is waaay down, energy is way up!

hi everyone. i went to see an allergist today for sun allergy. i had bloodwork back in December and today was the follow-up, my immune system is all good. he asked me questions to try to determine what could be causing the hives from sun exposure and he asked me if i have any bumps. i said well now that you mention it i have had chronic boils since i was 15, so almost 28 years now. i think it is hidradenitis but have never been diagnosed. he gave me a referral to a dermatologist.

i typed hidradenitis in the search engine here and was shocked that these posts came up! sucks that this condition exists but glad i have other people to go thru it with.

the first one i ever had was on my tailbone, it went away with antibiotics but then came back a few months later; i had to have it lanced. then they started at my groin area. i usually have 3-5 going on at the same time. 1 will go away and 2 more will come, 2 will go, 1 will come. i'm sure you all now how it goes.

i have had them under my arms, one had to be lanced.

hoping the dermatologist will be able to do something for me. in the 28 years i'm sure i have had over 1,000 boils, and probably more than this.

I just wanted to post & thank everyone on this site that suggested eliminating gluten from your diet as a means to treat HS. I've been suffering with it for about 4 years. It started out with an occasional abscess on my inner labia. Figured it was from sweating during workouts, summer heat, etc. No big deal. Then they came more and more frequently & increased in number. With their location, its needless to say how unhappy my husband was. I tried everything: antibacterial soap, ivory soap, dove soap, oatmeal soap,sensitive skin soap, glycerin soap, body wash, neosporin, hydrocortisone, Monistat cream, acne cream, cotton undies, no undies, you name it. I finally decided I needed to go the doctor and decided to go when I got another one. Well it came on a Friday afternoon and of course my gynecologist was only in until lunch that day so I had to wait til Monday. Don't you know the darn thing drained Sunday night so there was nothing for him to see on Monday. He said it was a carbuncle and they happen when a lot when you shave. Well I don't shave my inner labia and frankly hair doesn't even grow there! Plus I had laser hair removal a few years ago on the outer labia and bikini line.

That night another one appeared, I called back to the doc's office first thing in the morning to find out he was off that day as he had call the night before. But the nurse practitioner could see me. One of the best things that could've happened. She listened to my history and everything I tried. She took a look and decided to drain it to send the fluid off for analysis and started me on antibiotics until the labs came back. 2 days later we had the results and she said it was a skin infection and needed to prescribe a different antibiotic than the one she gave me. I took it for 10 days faithfully and the abscess cleared. Yay!!! About two weeks later another couple abscesses appeared and she prescribed another round of antibiotics and those went away too. It was rather interesting because it was like a bunch of teeny tiny ones I didn't even feel drained too. A reprieve for another 2 weeks or so. 2 more appear on a Friday afternoon. No one to prescribe anything for me at the GYN office again so I have to wait for Monday. By Sunday night however, one of them had grown to the size of a large marble, I was in excruciating pain and started running a fever--never a good sign. My husband had to take me in to the doctor that day as I couldn't even sit upright enough to drive. The nurse practitioner sees me again and thankfully lances it. But she says once she gets in there that its like there were actually 3 or 4 of them all together forming the large lump under the skin. She sends the sample off to the lab and starts me on the antibiotic again and decides to follow it with a round of doxycycline which makes me sick, sick, sick. She also recommends trying Hibiclens 2-3 times a day. The labs come back absolutely clean--no infection even with all that pus and blood. She has the lab run it again and its clean again. She was dumbfounded, but that's when I started suspecting something else was going on. I did more research and found this site as well as a handful of others that talked about HS possibly being an autoimmune disease and potentially being related to gluten sensitivity. But I wasn't ready to give up gluten just yet--it was a huge part of my diet. Then my husband & I went on a kid-free vacation to Mexico for a week and I had the worst outbreak of my life with more than 10 of those abscesses appearing on both inner labia. I drained the ones I could with a straight pin sterilized with alcohol and we had the hotel doctor call in some antibiotics. But the abscesses kept returning and they were getting worse and worse. That's when my search for cure kicked into high gear.

At the first of the year I decided I'd had enough and I would give going gluten free, egg free, dairy free and nightshade free a try one at a time. Gluten was the first thing I removed from my diet. Over the course of 3 weeks gluten free I only had 3 single lesion flares which I drained myself. Then none at all for 4 weeks. I also noticed that the blocked pores on the undersides of my breast were clearing up as well (maybe it was mild HS & I'd been living with that for years). I did have to do a round of antibiotics for strep though so I wasn't 100% convinced gluten had been the culprit. Then a single lesion flare while on vacation that I was able to drain. This one came after I ate a custard and fruit dessert. It had a crumble topping on top that I scraped off and even went down about 1/3 of the way into the custard to hopefully avoid gluten contamination. When I came home from vacation I was exhausted from a red eye flight and starving. Without thinking I ate a bowl of buttered pasta with parmesan cheese. And nothing happened. I was thrilled to death that I didn't pay for that mistake, but it also had me curious. It took another 6 weeks with no flares for me get the courage to try to introduce gluten again to see what happened. Maybe I was just eating way too much gluten before. So I added gluten back into 1 meal a day. First night was spaghetti, next morning nothing. Yay!! Second night was hamburger night and that bun was absolute heaven! Next morning a tingling sensation had started along my inner labia. But I was still hopeful. Third night was New York Style pizza from my favorite pizza place. 2 slices of cheese pizza and I was a very happy woman. Until morning when I discovered another lesion. By the end of the day I had 2 and by the next morning I had 4. I was in so much pain and having difficulty draining them that I swore no more gluten-- it just wasn't worth it. Those cleared up followed by another single lesion that was difficult to get to drain. I'm 2 weeks out now from my spaghetti-hamburger-pizza experiment and I'm happy to say lesion free. And I plan to stay that way!

Who would've guessed gluten would be the culprit? But I'm ever so glad someone did! To others still suffering...there is hope! Your HS may or may not be caused by gluten sensitivity like mine is. It really is a process of trial & error. Results don't happen overnight. Whatever you try you have to try for 4-6 weeks to allow your body to re-regulate itself. I wish you luck!

I am 53 yo and after years of trying to figure out what is wrong have I been finally diagnosed. I hate this disorder, I hate the pain and I am looking for natural "cures" and looking for a detox to thoroughly cleanse my system without making myself sick.
I do Zumba to loose weight and always end up with more. I am getting them on my thighs and one on the inside part of the elbow. My scars are s bad that do not want anyone to see my body, not even my husband and I am not a prideful person to start with.
I am gluten free because of Celiac's so any help, suggestions and just knowing there are others helps.

Hello fellow brother and sisters I also have H.S. I understand your pain the misery being a prisoner in your own body I have had them for over ten years I'm only 24 but ive done a lot of my own research thru internet and trial and error on myself I'm still learning new things and I want to share them with you because none can understand the life we go thru unless you go thru it yourself anyways now I'm rambling...
What has worked for me :
I only use Nubian (tea tree/lemongrass the green box) sopa or Safeguard (beige) sometimes I can't find Nubian since its a little hard to find but i prefer Nubian anyday.
Boil Ease cream when an abscess does arrive if possible with a large bandaid to cover
Triple Anti-biotic ointment when abscess explodes if needed with bandaid to heel the raw wound
Any Organic Tumeric you can put in your diet do it! Even supplements makes sure its real no imitations
Gluten Free diet
First Aid Antiseptic spray w/pain relieving is good for minor irritations in small areas and for prevention
Draw out salve can help for over sized abscess that are taken forever to explode it can speed up the process the black tar looking kind

Things to avoid:
SWEATING
HEAT
Friction
Stress
Moisture
Aloe soaps
Moisturizing soaps
Gluten
High intakes of suger
SODA
Powder on skin
Tight clothing
-yes i know these things are hard to avoid thats why H.S is such a living

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These are things ive tried and make life a little more managable theres no quick fix we just have to take precaution with everything we do those of you who work out and live active lifestlyes i hate to tell you but you need to slow down i understand your not lazy nor do you want to be but the reality is H.S is going to give you limitations the pain really isnt worth it slow down keep from sweating eat right stay away from gluten drink alot of water intake plenty of tumeric even cayenne pepper can help since its an anti inflamitory . Hope this helps someone

I suffer as well, trying to go off nightshades seems to be helping! it is great to have a support group here. I was suicidal one time and I told the doctor to send me to an island because I felt like a leper, but we are NOT lepers nor disgusting, or anything else, we are beautiful people who deserve love and respect and dignity.

Nightshades also include sneaky little Pimentos and Paprika, I have found there are many foods that have these ingredients but it is worth it to me to try and go off all Nightshades to see if this helps, so far about one month into detox and I am feeling better but not in remission, I am going to look at the sugar issue and am taking all tips I read and making a word document to remember all the helpful hints. May we all live without this crap! We can overcome!!!! Peace and Love Denise xxoo

Showing progress!!!! since I've been off nightshades my left axilla is symptom free, the lesions in groin which have been symptomatic and recently started hemorrhaging have started closing up and swelling is going down. I am excited. I am also cutting down on refined sugar, hope to stay off it all together, it helps for me to be very aware of my body, most of my life all I cared about was trying to get thin and not really in tune with who I was. I have hope for the future and sending positive energy to fellow sufferers.

Hi Kat. I see there are 112 replies, and I haven't read one yet, but I am DYING to befriend anyone else out there with this condition who understands what it's like. I broke out in 2001, but it wasn't until around 2004 that I was diagnosed. By that time, I was in the moderate range, and was thankful we caught it before it became severe, however I am disfigured by horrible scarring.

I have been able to actually reverse my stage, which doctors didn't think was possible, as I learned that this could be an auto-immune disorder. Because I was allergic to eggplant and zucchini, I learned that they are both in a family of plants called "nightshade", which includes tomatoes, which changes the acidity of your blood. I also take turmeric and zinc supplements daily, and as soon as I have a boil that I cannot clear, I immediately begin treating it with an ointment for staph infections.

I have to do daily cleanings of "tracts" under my breasts. You know what I mean...substance collects in tunnels under the skin. Every single day, I go through a process of expressing the tunnels. If I don't, they become "deep set" and untouchable, with infection set in. I apply an anti-fungal as well, to keep the under-bosom dry, as I am very heavy chested.

In my groin area, I do once a week inspections. These pre-eruptions, I have learned to detect and clear, but they are very hard to see. I have seen pictures of other HS sufferers, and I see that they are covered in these pre-eruption markers, which I can best describe as blackheads. They are almost imperceptible, but as you pull the skin and look in the mirror, you may see a tiny black dot. That is what will become a boil. In fact, when I have been unable to cleanly get a clear removal of it on the first or second try, I know that I'm in for it, and I should preventively apply the anti-staph ointment now. I roll the black dot between my (clean!) finger and finger nail of another finger, and you will see a worm-type shape come out...fairly solid, with a dark tip, which was the visible black part. If you smell it, it's disgusting. It's no wonder that substance, if left in the body, rots and becomes pus.

During my last examination, I was told that it seemed that my daily maintenance under my breasts is so effective, it doesn't look as though I have HS anymore at all. It's sad, because I go through so much every day to make it that way, but not being in pain is worth it. It's not as pretty a picture in my groin. The damage was so widespread, so excessive, though I am able to keep from getting boils often (knock on wood), the pitting and purple scarring has left my inner thighs ravaged, and this takes a horrible toll on my sexuality, being a single woman who wants to put herself out there and date, but would never want a lover to see this horrid disfigurement adjacent to my womanhood/sexuality. It really is no surprise to me that suicide rates are high among sufferers. Not a single soul in my family knows I have suffered from this condition for the last decade of my life.

I'm really so relieved that something was said here. I would love to be part of a community related to this topic. We should no longer continue to suffer in silence.

Anyone who reads this, please feel free to respond here, privately, and/or send a friend request. It's really encouraging to me to see this being discussed. My heart jumped into my throat when the page loaded and I saw the topic. Take good care, Meg

I found this thread when I was looking up information about hidradenitis suppurativa, it was a wonderful thing to come across.

I suffer from hidradenitis suppurativa, I self diagnosed a few months ago, but have been largely suffering for 8 years. I've seen doctors, dermatologist, and surgeons and no one could ever diagnosis it, or help me to treat it. I was given antibiotics, steroids, countless types of creams, and none of it worked or helped me. I have started looking into more natural types of treatments, and things I can do within myself to help control the condition. I know many people say you shouldn't self diagnosis but I have done countless research into this, and have knowledge in the medical field.

I have never personally met another person who suffers from hidradenitis suppurativa, and had never heard of it until I started researching. I haven't been able to find it in any of my medical books, or medical dictionaries. It can be very embarrassing to deal with and very frustrating because it really puts limits on what you can wear and how you feel about yourself.

I am beyond excited to find this post! I know there are other people out there but have never found any. I have had HS for what seems like forever. Mine is mainly in the groin, upper thighs, butt and under my breasts. The most embarrassing thing I have done is when I gave birth and had a room full of strangers staring at my bumps. It was mortifying. I hope that we can talk more whether encouraging or sharing tips! So glad I found yall!!

Hello there I also have HS, 18 yrs suffering with this awful disease which has also helped to make me fat cause of not being able to move much and also having to take so many meds. I need to have surgery and they want me to lose weight Im like its kindof hard to exercise when most days I cant even walk or even raise my arms, for 2 yrs I was bedridden but yet they think Im suppose to go to a gym ok whatever. But anyway. ive been trying to diet so the weight of course is coming off slowly I did buy a treadmill 3 days ago and Ive been walking 20 mins the past 3 days very slowly but at least its something. so hopefully I will lose some so I can have the surgeries. Im hoping after the surgeries ill get healed and be able to exercise a lot and be able to function for awhile without all these lesions and lose even more weight.

I have had hidradenitis apparently since i was about 12. I steadily gained weight for years until I got to 325 lbs. Now I weigh 205 and still achieving. I am 21 years old and I thought that they were heat bumps all my life but I realized with the my weight steadily declining that it wasn't improving so I did research. I never told my mom or a doctor. The only person that knows they are there is my significant other. I get them around my butt ox. It makes me self- conscious around my significant other. I've never had a problem with clothing because being a bigger girl I covered up anyway. I am avidly working to treat it now and hopefully rid myself of it one day.