Welcome to the Hidradenitis Suppurativa Support Group!
Replies
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Hi, my name is Lianne i'm 27. I have had HS since i was 18 but have only been diagnosed 3-4 years. I get flare ups under my arms and in my groin area, i have had 1 surgery in my left arm pit, (i won't be doing that again in a hurry) 9 months later I had finally healed, only to have the worst flare i had ever had, everywhere they could be they were. I was seeing a dermatologist who performed my surgery, he suggested the contraceptive implant and told me that i needed to lose weight, I knew i needed lose weight, my HS had got so much worse since gaining weight, ironically though it was through my HS i gained the weight. Anyway I have now had the contraceptive implant (23rd oct 2012) and (touch wood) it seems to be doing the trick i do get the odd "lump" but i can deal and cope with them.
I have now embarked on the losing weight, I've managed 17 lbs in the last 3 weeks, however i still have 105 lbs to lose, but i'm determined to get there and get this horrible illness under control.0 -
Hey Lianne,
Welcome! Tell me more about this contraceptive implant. Is it one of those IUDs? I head the implanting was pretty painful! CharlieBarley is having great success with a Paleo diet, and I'm about to give it a shot myself, see if it helps out any. I hear ya about the HS and weight. It's so frustrating because you know that being overweight makes it worse, but having HS makes exercise painful and often causes new flares
Doomed if you do, doomed if you don't... glad to hear the IUD is helping though 
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Hi! No it's not an IUD it's a small flexible tube that goes in the top of your arm, you need a local to have it done, it only contains the progesterone hormone, once it is in it stays there for 3 years! Before I had mine I was going through a really bad flare and was in so much pain walking was difficult, it might be just coincidence and i just came to the end of my flare but after having the implant things cleared up and have stayed pretty good since! I will definitely have a look at that diet, I will do and try anything to be free of this!!!0
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This is an excellent article also from someone who put their HS in remission through diet:
http://www.primalgirl.com/2012/03/10/primalgirl-opens-up-hidradenitis-suppurativa-part-2/
@USA - read her post on Leaky Gut... After I read her post on HS Part 1, I immediately kicked the nightshades from my diet... for 28 days... nothing changed. After reading the post on Leaky gut things started to become a little clearer to me. I read further on the subject and I bought a book about eating Paleo... I've been doing that for 5 weeks now and I'm healing!!!!!!!!!!!!!!!!!! And I haven't lost a pound in the 5 weeks. I'd like to lose weight, but that is not my main goal. My goal is to find out what is causing this because I've had it for 30 years!
Try changing your diet to Primal - I could tell after 15 days that it was working - give yourself 4-6 weeks to do something really good for yourself! If it doesn't work, what harm?0 -
Hi everyone,
I'm Kristi, and I'm 28 (29 in a month). I was diagnosed with HS as a teenager and I've had four surgeries for it over the last 10 years. It started in the groin/upper thigh area when I was about 10 or 11 and has progressed to my underarms, breast area, abdomen, and groin. I think I'm about a stage 2-3; my wounds tend to open and drain continuously (I can't remember a time that I didn't have at least one open sore on my body somewhere), but sinus tracts tend to be pretty rare. I did find one recently and that made me kinda sad. A dermatologist put me on doxycycline tablets and clindamycin phosphate lotion; the lotion didn't really seem to do much except make the sores burn and sting, but I am still taking the doxy twice a day.
I'm following a Primal diet. My boyfriend got me turned on to it a couple of years ago. Last summer, I decided to try eliminating nightshades from my diet to see if that would help; the only thing that happened was that my food got really bland. Since I switched to Primal, my facial acne has cleared up beautifully; if only my HS would follow suit! It really flares up when I do a lot of physical activity, but I'm not about to stop exercising so I just deal with it.
One thing that I have found that helps a little is using Hibiclens in the shower a few times a week. It gets rid of the odors that come with some of the sores and helps them heal up. You don't want to use it every day because it can really dry out your skin, but 2-3 times a week is good. I bought a gallon of the stuff on Amazon and I keep a small bottle of it in the bathroom to refill.
I'm glad to have found this group. I look forward to getting to know you all better in the future. 0 -
Hi Kristi!
Welcome to our small group It sounds like you've got a pretty severe case. I'm sorry Primal hasn't done much to help your HS. How does it differ from Paleo? Also, how long did you eliminate nightshades for? Do you eat any grains?
I've heard excellent things about hibiclens! My HS is pretty mild though, so I haven't gone out and bought any yet. I keep mine in check by checking the sites daily, draining when appropriate and scrubbing with antibacterial soap afterwards. It's funny, I know that makes it worse for others. It's so strange how one thing can work so well for one person and be so detrimental for another. One thing's clear though, I can't wait for summer so I can get back into a pool! It does wonders for the HS.0 -
Hi everyone!
My name is Brenda and I am a 29 year old female. I was recently diagnosed with HS and Keratosis Pilaris. I had KP every since I could remember which has hindered me from wearing shorts and tank tops to avoid questions and people talking about it. When I turned 21 I started getting weird boils on my groin where my panty line was. I stopped wearing panties and it went away but eventually it started again in my armpits then progressed to my inner thighs. Yet another reason not to wear tank tops and shorts in the humid heat of Georgia. I was so afraid and ashamed that I didn't see a doctor for my issues for years. After seeing my doctor they said it was staph and was told to wash them and put some ointment in my nose. This didn't do anything! I was told to take zinc during my last visit so I am trying that out for now along with gluten free diet.
I am hoping this helps clear up my HS and hopefully my KP will go away soon! I haven't had a partner in years due to the scarring and frequent bumps. I refuse to wear tank tops and shorts not only because of the ugly bumps but also shaving seems to make them flair up even more. These double whammy of skin issues has made me ashamed and I have become a hermit. I am generally a happy go lucky person who loves the company of others but in recent years I have become a prisoner in my own body.
Sorry if I am sound so depressed but I have three HS boils on my armpit, thigh, and butt. I never had so many before and they are pretty painful at the moment. I am just glad there is a support group and I know that I am not alone in this battle.0 -
Hi Kristi!
Welcome to our small group It sounds like you've got a pretty severe case. I'm sorry Primal hasn't done much to help your HS. How does it differ from Paleo? Also, how long did you eliminate nightshades for? Do you eat any grains?
I've heard excellent things about hibiclens! My HS is pretty mild though, so I haven't gone out and bought any yet. I keep mine in check by checking the sites daily, draining when appropriate and scrubbing with antibacterial soap afterwards. It's funny, I know that makes it worse for others. It's so strange how one thing can work so well for one person and be so detrimental for another. One thing's clear though, I can't wait for summer so I can get back into a pool! It does wonders for the HS.
Primal is a little less restrictive. I am able to eat dairy products, like cheese and butter. I went for awhile without dairy and also saw no effect from that, so I figure if I can handle it, I'll eat it. I quit nightshades for about 3 months, and then tried them again - no difference. I don't have any of the symptoms of leaky gut, so I'm pretty sure that has nothing to do with it. I don't eat any grains at all. Back during the holidays we were "on hiatus" from the diet, eating whatever we felt like eating, and I got horribly bloated and felt really bad most of the time. Going back on the diet and getting rid of the grains and processed stuff has made me feel a lot better.
There are really only two things that I've noticed that tend to influence my flare-ups: physical activity and hormone fluctuations. I'm in the middle of a pretty bad flare right now; I have about nine bad spots in various stages of development. I started exercising regularly when I got back on the diet and I think it's catching up to me. I'm planning to do more swimming now since it doesn't seem to bother things as much. At the moment, however, we're in the process of moving and exercise is sort of on the back burner until that's done.0 -
We've got a couple of new members. Come on in an introduce yourselves!0
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Hello to everyone! I'm glad we are all able to meet here and find each other. Just last week I started a blog to journal my journey through health to kick this awful disease.
Everyone is welcome to read. Maybe you'll find something in it that sparks a light and helps you find your health.
http://feedyourbody-trialbyfire.blogspot.com/
Peg0 -
Hello! My name is Brianna, I am 22 and I have had HS since I was about eleven. It began as one terrible boil every few months that would make sitting in class very difficult until I popped it. In the last few years I have gained about forty pounds (college/nursing school/emotional eater/working at Starbucks) and it has progressed viciously. I have at least one angry one at any given time and many others at various stages of healing. I tried doxy when I was first diagnosed at 18 but all it did was make me nauseated. I was getting some relief from turmeric, zinc and azo yeast supplements a few months ago, but I got very stressed and depressed and stopped taking them. Today one popped up so suddenly and painfully that I got ANGRY. So here I am. I am going back on the zinc and turmeric, increasing water intake drastically and I am looking into paleo and primal. I'm also thinking that those of us who wish to lose weight would benefit from swimming for cardio. It is very nice to meet you all, I've never met anyone who has this issue.0
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Hi everyone! My name is Cheryl and I'm 27 years old. I've had HS for about 2 years now but was recently diagnosed about a month ago. I first started getting the boils underneath my belly (lasted a couple of months) and then in between my thighs(this also lasted a few months) and then I started getting them in the arm pits. The ones in my armpits were different than the ones I had previously. They were bigger, more painful and lasted longer, Then I started getting them in the groin area. I didn't have insurance so I was trying different clinics. They had no idea what it was and thought it could be MRSA, the lab results came back negative(whew). I also had bronchitis at the time and the dr prescribed something(sorry dont remember what) that would help the bronchitis and boils. It worked!! It was amazing because I went on vacation to the Caribbean and could actually enjoy it. But about a week after the medication finished. They came back with a vengeance!!
I work an office job and some days it was too painful to sit or walk or do anything. I ended up going to a different doctor and he thought it was a bacterial infection. He told me the best thing would be to go to a dermatologist but since he knew I didn't have insurance prescribed me minocycline and told me to use HiBiclens from the local pharmacy. The minocycline didn't really help at all. I was really frustrated and it was starting to take its toll on me. I was embarrassed and ashamed. I started to research it and realized it was HS. I didn't look too much in depth into though. I started to eat home-cooked meals and noticed the boils weren't as many at a time(sometimes I had 5-6 at once around my groin, my armpits were usually 1 at a time).
About a month and a half ago, I went to my primary care provider(i now have insurance YAY) and he thought it could be folliculitis and referred me to a dermatologist(finally made it to one). The dermatologist confirmed what I already knew but I couldn't help but cry in front of him. I had been researching HS in more depth and from everything I read...there was no cure. He prescribed me doxy for a month and injected each boil with a steroid shot and told me I'd have to come in every couple of months and see how the steroid shots do.
The next day, i could already see the boils flattening and drying up. This made me positive and I was determined to try everything the right way to get my HS under control. So I started researching more and I'm trying to eat more veggies and be healthier because I def see a diff in how my diet affected the boils. I can't work out because that makes it worse so I've started to go to the pool at my gym.
Sorry, I didn't mean to be a sob story but I just want to be able to help someone who might not know what they have is HS. I'm Indian so I've started to use some Indian stuff like Safi(a blood cleanser made with natural herbs I take a teaspoon twice a day) and I've also started to use Neem soap(made out of Neem which is a common tree in India and the leaves are used for many things) the Neem soap, I use in the affected areas only as it tends to dry out my skin.I will be adding Turmeric pills to my diet as well. I haven't been using the Safi for long at all to notice anything but I truly believe in herbal remedies. I buy these at the local Indian store but you can also find it on Amazon if anyone would like to give it a try. Please feel free to add me if you'd like Nice to have and be a part of this group!!
Neem soap:
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias=aps&field-keywords=neem soap&sprefix=neem+s,aps&rh=i:aps,k:neem soap
Safi:
http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias=aps&field-keywords=safi&rh=i:aps,k:safi0 -
Hello!
My name is Ashley,
I have not been diagnosed with this, but I believe this is what I have.
I have abscesses on my inner thighs and used to get them in my arm pits, but dont get those anymore.
My doctor told me it is heat rash, and will just go away once I lose weight.
But I have terrible scars, and the ones that hurt the most are where the thigh meet the butt cheek,
and I have some really terrible scarring there, where the skin is discolored and misshapen.
I have abscesses under the scars too...They really flare up when I am on my period...so I wonder if it is hormonal.
But I never had this while in high school when I was skinny and active.
This only happened when I put on the weight.
I usually get 4-6 once a month during my period, then they go away. some months i dont have any.
Right now they are going away, and they were smaller than normal this time.
So I am watching what I eat, working out at a boot camp style gym, and hopefully this will go away.
but I am terrified that once I do lose the weight, my thighs will be so ugly and disgusting....which they
will be anyway because they are so fat now, that ill probably have saggy skin.
I don't know....all i do know is that I hate this!0 -
Hi Ashley (and the rest of the group, especially new people!)
Hormones could definitely be a cause for a flare up. I do not get any abcesses anymore since I stopped drinking milk, but I will occassionaly have tenderness right before or during my period. Heat or constricting clothing can cause problems as well. Examine your foods, eliminate what you think might be causing problems. I know for me it was milk but for others its been other foods. It could be dairy, gluten, nightshade, etc. Dairy was my first guess because my father is lactose intolerant and when I had too much dairy my stomach always reacted badly. I was also in a couple of situations where I did not drink milk for lengths at a time and noticed that my HS improved. It does take time though. I took me a full year of not drinking milk for my arms to clear up completely.
I have been overweight my whole life but I never had any problems with HS until I was 18. So like others have said before even though the docs say weight is a cause -- its not. It can make it worse but only because when the skin is pressed together it gets warm, sweaty and no air.
I also had surgery on both armpits when I was first diagnosed by a doc. The scarring is not pretty. But I dont let it stop me from wearing tank tops or bathing suits. I dont even feel self conscious anymore about the scarring. You've gotta decide what you will be comfortable with but the best thing is to not let this disease control you. I decided the scars are scars and they just make up a part of me. If someone asks they dont need all the details I just say I had an infection in my lymph nodes and had to have surgery. If they have a problem with it, well thats their problem.
If you can get your HS under control, the body is an incredible machine it will heal its self as it can overtime. Might not ever be perfect but its not the end of the world.
It's easy to be depressed by it, but the best way to combat it is to take control. Figure out what triggers a flare and fight it. Another thing to wary of (and this kinda sucks) is that sometimes prescriptions and even OTC meds can cause flare ups. I dont take OTC drugs that often but when I do sometimes it causes some tenderness. So examine all your habits.0 -
For anyone who cant workout I wanted to suggest Tim Ferris's 4hour diet. I've been following it for about 3+months and just have not had the time to work out for much of it. Still I've lost about 1kg a week and others have much better results sometimes. So far I've lost about 30lbs essentially no exercise in 3 months. It's very similar to paleo or primal except no sweet potato, no fruit and no sugars. Its high on protein, veggies and beans. You can skip the beans if you dont want/like them but they do help in maintaining energy if you've never done anything like this before. And theres a full day included for cheating.
Here's his posts: http://www.fourhourworkweek.com/blog/category/the-slow-carb-diet/
and this is an excellent support group: http://4hourpeople.com/
feel free to message me if you have any questions. I know I dont go into a ton of detail but the articles I linked to do!0 -
Hi, I'm Stephanie.
I haven't officially been diagnosed with HS, but I've come to the conclusion that I do have it through internet searches and the HS Institutes video on youtube.
I've been suffering with this since I was 13, although the spots weren't normally painful or large. When I was 17 I got pregnant, and it almost entirely cleared up, I never had flare ups. But a few months after I gave birth it was worse than it had ever been.
I am now 21 and flare up constantly. Some days I can barely walk without crying.
I want this cured, but mostly I want some tips on what to do in the short term to get it under control. At this moment, for example, I have 3 spots that are large and red and painful, but all are either too hard to drain, or are too far beneath the skin.
I don't want to live like this anymore.0 -
After I had my daughter I had some pretty bad flare ups too. Not only are your hormones nutso but there is new baby stress as well. Read through this board if you havent already, there are some suggestions on how to deal. Depending on what you prefer warm compresses or cool compresses could work. Warm compasses will however encourage things to open and drain usually. A warm rice sock usually made me feel better.
In the long run, many of us have found that flare ups are triggered by food. For me it was milk. Once I stopped drinking milk my HS began to clear up and right now I have been flare up free for probably more than a year. I do still get some soreness occasionally usually around my period or if I am super stressed or maybe when I just have too much other dairy products. (I can do butter, ice cream, foods that have milk in them that's cooked I think at least it has not caused any major flare ups)
Surgery is an option but I honestly don't recommend it. I have scarring from the one time I had surgery and it did not make things any better. I would say it honestly made things worse. Only changing my diet made things better.
Unfortunately there is no medicinal cure. Anyone that I have come across that has managed their HS has done so through diet. And even diet changes are not a quick fix. It probably took just under a year to be completely "cured" but it did improve and be less painful during that time. And any flare ups I would get healed a lot faster.
I have some other resources on my pc that I will post later when I am able to find it.0 -
Hello my name is Michelle and I am 41 yrs old. I have been suffering from HS for 6 yrs non stop. So glad to find a support group!
I just had gastric sleeve surgery on October 18. I am so happy I found this group. This has taken a huge toll on me physically mentally, and spiritually. Not to mention how hard it is for loved ones to see me hurting. Since my surgery it has flared big time. We are so disappointed since the docs were hoping for it to get better with weighloss. I'm down 52 lbs today and hoping this stuff will ease up the more I lose.
Any one who would like to chat let me know.
Thanks!0 -
Hi everyone, I'm Lora.
Firstly, I'm so impressed and so so glad to see a group for this on this site. I've had HS since I was roughly 19, but it was like nothing to me then. A few sore lumps that came and went away every few months. However, I'm now 24 and HS has taken over my life. It started really bad about 6 months ago, and has continuously gotten worse. (I'm not sure what stage I am in, I think it is stage 2).
It affects both my underarms the worst, but I've also had them around my groin occasionally. I sometimes have days where I can't move my arm at all because of this. I'm eager to lose weight, and have been trying to do so since before the HS got worse. Does anyone have any recommendations for exercises btw???
I used to love swimming in my local pool until one day I was approached by a staff member there and asked (very politely) not to use the pool for "hygiene reasons", even after explaining about HS, I felt like I was being treated as though I had leprosy. I've been too mad and too embarrassed to return ever since, so no more swimming for me. I've recently taken up yoga, but this is slow to burn calories because I'm a complete beginner. It is fantastic though at reducing my stress.
I'm also trying an elimination diet, so far so good. I've noticed that tomatoes, potatoes, gluten and spices are some major triggers for me. I have a vegan bf though, so a lot of the diet changes are tough when it comes to doing the grocery shopping!
I'm also going through counselling to try and emotionally be able to take HS. I am yet to be able to talk about it in person without getting very emotional.
I hope I'm doing everything I can to try and kick HS in the butt.0 -
Hi! im Arianna 18 and have had HS for 6 years but i have just got a name for this a few months ago I've tried a few different medicines includes tetracycline,differin,clindagel etc i have this on my under arms and my inner thighs they flareup every month. I recently purchased some turmeric supplement from Walmart and that helps a little .. i waiting on a phone call from a doctor the specializes in HS as we speck i don't know what stage i am at all so i hope to have some answers:)0
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Hey, I'm Laura. I've had HS for a few years now, but only life-altering since last september. I'm trying to lose weight to improve it, I've changed my diet, started taking vitamins (which have helped loads, especially vit. d).
I'm looking to add some new friends who are going through the same battle of losing weight while contending with HS.0 -
Hi, I am Desirae and I have been diagnosed with HS for about 10 years, and suffered with it silently for several years prior. I love that there are support groups for this. It really helps to lift me up when I feel like I am gross, or the only one that has it. Like all things, there are good days and bad days. There is a really great, informative support group on Facebook that I found prior to the one here. I am not 100% sure of the title, I think it is Hidradenitis Suppurativa Support Group. If you are on FB, you should totally check it out.0
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Hey, I'm Kathy and I'm 34 years old. I started having symptoms of HS when I was around 21. I got the typical "it happens" routine from my doctor who was unconcerned. I would get abscesses in my underarms but they were the worst in my groin area. I have severe crohn's disease and a new gastroenterologist diagnosed me with HS when she was checking a golf ball sized abscess to see if it was a fistula when I was 29.
My new doctor put me on remicade for my crohn's at the same time she diagnosed the HS and immediately the HS went into remission. I don't want to get anyone's hopes up for a miracle cure though. From what I've read and seen in pictures, I was only stage one. It's a really serious drug with many side effects including the risk of cancer.
Unfortunately, four and a half years after starting remicade, I've built up antibodies to the drug and it's no longer working for my crohn's. I stopped getting my IV infusions of remicade in July and as of yesterday, my HS is back. I just started Humira so I'm hoping that it will work for both my crohn's and my HS.
Since I went into remission right after diagnosis I didn't really do any research on HS until today. I'm floored by all the HS pictures and everything that I've read. I've dealt with a lot with crohn's. Surgeries, infections, drains, blood transfusions etc. So while I can imagine what stages 2 and 3 are like... I can't imagine going through it on top of everything else.
Sorry for the pity party there. I'm very grateful that I've found this group. It helps to hear from other people who have the disease.0 -
Hi all of you beautiful ladies!! :flowerforyou:
Firstly, thank you to Kathleen for creating the original thread and this support group. It's a big deal to get this out there and get everyone talking about it! Like, some people here I also happened to just take a shot in the dark and search randomly within the group section for "Hidradenitis Suppurativa". Boom! Here we are.
My name is Tara and I'm 26 years old and my doctor suggested I might have HS around a month and a half ago. About 3 months ago I made an appointment to get a lump (read: abcess) checked out in my left underarm. The one doctor just said it was a cyst, nothing to worry about and to go on a general diet to lose weight.
I saw a nutritionist immediately as diabetes runs in my family and ended up starting a 1200 calorie/day regimen for about a month until I had a more thorough physical with my primary.
I see the primary and tell her about the lump and show her also how I've been breaking out on the sides and underneath my breasts and she casually mentions HS and also that I have signs of acanthosis nigricans and needed blood work to see if I was pre-diabetic. The need for a blood work for diabetes scared the poop out of me on its own, until I go home and google HS.
THAT. As you all know, the pictures and descriptions are absolutely TERRIFYING!! I was in tears randomly every day for about a week til I had the courage to share it with my partner (she has been so supportive) and my mom. I'm even in tears now reading the HS thread and the support group thread knowing that so many of you have it worse than me. I hope and pray for all of us that DEFINITIVE strides in medicine and support can be made in the near future. It's absolutely ridiculous that even DOCTORS misdiagnose, don't recognize it or don't even know about it!!! I consider myself very lucky that my primary doctor knew. I almost didn't tell her about the "acne" on my breasts.
Anyway, after reading about the surgeries I immediately decided that I absolutely could not go that route. I started googling "natural remedies" or "natural treatment" until I came upon the Robb Wolff article and the Primal Girl blog. Maybe it's because I want it to be true, but I became convinced that it's an autoimmune disease. I know that's debateable, but I've found more evidence of remission in people who make diet and lifestyle choices than I have with surgery or antibiotics.
I believe that I am in Stage 1 (Goodness, I hope so) and I was reliably doing a low-carb, gluten-free diet with limited dairy. Not just for the HS, but also in fear of being pre-diabetic. It seemed the the small, acne-like breakouts that I had were healing and clearing up and I had no new lesions. However, after my birthday (July 18th) I went on vacation to San Francisco and ate tacos and oysters and In N Out and just fell off the wagon. I've been back since around Aug 1 and noticed a few new "pimples" (sorry if I use some terms interchangeably, but its just to get an idea of size) on my breasts and just today I noticed a marble-sized cyst in my groin and the original cyst in my left underarm returned, this time painful. It's a sign. And Fitness Pal, here I am!
I'm super short and have always fluctuated between being fit and thick (118-125) to chubby (130). However, in 2009 I studied abroad in Spain for a year and then came home, eating everything I missed. The last few years of college and post-graduation the weight crept up. 2010, 145. 2011, 155. 2012, 165. 2013, 175. With hitting my limit this year 200lb in 2014. At 4'11 that's more than a chunky monkey!!
I'm looking for HS support, maybe diabetic/pre-diabetic support, but definitely weight loss support and most importantly, friends who just want to live a healthy, happy life!!!!!
So, HELLO to everyone. You all seem amazing!!! I'm sorry for my lengthy introduction, but if anyone wants an HS buddy or diet-buddy or work-out buddy from afar or (maybe close!) please friend request or message me!! I would love to meet people who are interested in keeping each other accountable!! May we all at least be able to manage this heinous disease! :drinker:
xoxo 0 -
Hello everyone! Thanks for creating this group.
I have never talked about HS with anyone as you all know it can be embarrassing. And I'm sure people would automatically just assume you're not hygienic enough, it's because of your weight, or you're contagious.
So my story: I've been suffering for at least 15 years if not more with this horrible debilitating disorder. I know how painful it is, how it can ruin every single second of your life. And I have tried everything. Nothing has worked. The turmeric and zinc helped a little with the inflammation and pain, but just a little. Surgical grade antimicrobials and antibacterials did nothing. Showering four and five times a day did nothing. Antibiotics did nothing.
After reading and reading about HS I came upon a woman who said that eliminating wheat from her diet worked for her. At the time I was eating whole wheat everything. Mainly pasta - and I eat a lot of pasta. (Oh and losing weight did nothing. I've lost close to 90 pounds in the past 14 months. Nothing.) So I decided, I have nothing to lose I'll ditch the whole wheat. All I did was switch to gluten free pasta. (But eating wheat in other things) Within a week there was a dramatic improvement. Nothing I have ever tried has been this dramatic.
It is still early days for me. I have now been completely gluten free for about a week. Let me tell you, going gluten free sucks. It's difficult (wheat is in everything) it's annoying and it seems everything worth eating is made from wheat but if you truly suffer from HS (stage 2 and 3) you won't really mind one bit.
I was one of those people who did the eye-roll when I heard gluten-free. I thought if you didn't have Celiac's disease you were just buying into the hype. I get it. But now I get that gluten intolerance is a real thing. (And by the way I am not knocking wheat, if you are not intolerant, then by all means eat up, I wish I weren't intolerant to it.)
This may not be the answer for everyone and like I said, it's early days for me. I will be knocking out all nightshades as well and then add them in one by one (except eggplant, yuck) to see if I need to stay off those as well.
If anyone is thinking about going gluten free to see if it helps, please, please try it. Try it for a week, for two weeks. You have nothing to lose. (oh and I don't buy all that gluten free stuff like brownies/pancakes/chips/blah blah - they just replace the gluten with other not-good stuff - I just eat things that are naturally gluten free - meat, veggies, fruits, rice noodles,etc)
I hope I can help at least a couple of you who are suffering with this horrible affliction.
Thanks for listening.0
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