Welcome to the Hidradenitis Suppurativa Support Group!
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Hey everyone!
My name is Amy. I am 29, and was diagnosed 3 years ago, and am in stage 2. Although I KNEW for years that I had something serious going on , and pressured the doctors to tell me it was more than the heat, my diet or shaving, I was misdiagnosed with MANY different things. It was a relief and a huge crush to finally be properly diagnosed. It took me a few days to truly say it out loud and feel anything. Though it is not terminal, it is a sentence for life, and that is never easy. No matter what it is, to know something will change your life forever, and unpredictibly hinder your everyday life is scary.
I used to be a competitive swimmer, and I was damn good:) That all stopped when I was 16 and got into a wreck and broke my collarbone and sternum. I started to gain weight slowly after that, and my skin was really bad. I would get 2 or 3 cysts a month through my early 20's, and the doc's would always tell me it was staph, or cause I shaved. I would try everything from not shaving to not eating, nothing helped.
The HS truly was at its worst about 4 years ago, right before my diagnosis. I was getting some flare ups that were so major, I was not able to work or even get out of bed. I would end up in the ER a few times before I went to see a specialist. Even though my own self diagnosis (made after years of researching different skin conditions...) would prove itself correct, it was a sad day when I went to the doctor. She tried antibiotics, which only caused more issues with my body. (thrush ..etc) Then creams. They would help for a while, but never a solid solution. Now, it is mostly trying anything I can to see of it has any effect. I have had luck with adding Tumeric to my diet and taking it in pill form as well. Seems that I am just ever so slightly LESS red and sore in places. My worst area is my thighs. I have bad flare ups on my under arm and breast as well. The scars are the hardest for me , I think. Sometimes I'd just really like to wear a tank top or bathing suit with OUT feeling like a monster.
I find myself tearing up reading other posts, knowing what you all must deal with. I hope and pray more people educate themselves on things like HS. There are a lot of people that suffer from this, and I am glad we at least have the internet so that we can have eachother. Hope everyone is well, and has a beautiful day
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LOL, I was trying to quote something you said, and it did NOT work! I'm still new to the group thing here I too was told it was staph. WRONG! I was put on antibiotics so many times I'm probably resistant now. WE are all here for support!
I know what you mean about dealing with the scarring. Sometimes that may be worse to me than the pain (only sometimes!). If I wear a tank top or swimsuit and lift my arms, I sometimes see people cut their eyes to look at the scarring. So frustrating.0 -
Hi, my name is Kelly and I have been suffering with HS since I was 18. At first my problem did not start out as boils or big abscesses. I started with a few hard lumps and 1 boil that came and went quickly but left a scar. But shortly after that I got into drum corp, lost a lot of weight and didnt have any issues until I became less active. I firmly believe my HS is weight related because I did not have any problems with this until after I started gaining weight. Most of my flare ups occur under my arms, but I also get them in my groin area and once or twice under one breast.
I also have a twin sister who suffers from this (hers developing that summer I did drum corp very rapidly). She did end up missing work due to hers and she had surgery for it under her arms; something today she deeply regrets. Surgery for her only made it a thousand times worse, and I've read for most people that is the case. Surgery does not help at all and in fact only makes it worse.
One thing I've found for myself that makes it better is to cut out milk, not dairy products just milk. I also had luck taking zinc in pill form but only if I took zinc every day. Unlike most people though, excercise and weight loss seems to make it better for me (and my sister, she says she almost completely in remission since losing 20 or so pounds). I have lost about 25 pounds so far and as long as I exercise regularly, drink lots of water and eat healthy I do not have any major flare ups. I still get minor ones but I am hoping that they too will lessen as I lose more weight.
I am glad to find a group for this and that there is hope for those of us that suffer. One last question though, does anyone know if this is genetic? I have a 3 year old son and I would hate to have passed this on to him, but I also do not know of anyone in my family who suffers from this other than my sister. Perhaps its just something they did not talk about though. I do know my mother does NOT have it, or anyone on her immediate side of the family. I do not know about my fathers side though.0 -
Hi Everyone
I'm Bunnyklutz's sister that she mentioned in her post. I agree with everything she said and wanted to add some. I've had HS since I was 18 as she mentioned. I've researched and read and try to know as much as I can about this. I was desperate to find something to make it go away and could not figure out why it had come back. Before I had my daughter is was essentially gone and then sometime while I was pregnant it came back. I have mainly in my under arms but sometimes I get tender spots in other areas. I used to get spots really bad in my groin but havent in long time.
For me it is weight loss and cutting out dairy/refined foods that have helped the most. The two times I have been HS free was when I drank less milk and ate mostly whole foods. Since realizing this anytime I have any kind of a break out I can look at what I ate and pinpoint it immediately.
Unfortunately shaving can sometimes make it worse. I avoided shaving often for a long time (I would just trim or shave gently on a good day) So can deodorant. I havent worn it for years. (I know what you are thinking, but I dont sweat that badly except when I exercise and honesly I'd rather be funky then in pain if I did) I tried wearing deodorant the other day and got a painful bump the same day (its since gone away, no drainage). Deodorant blocks the ducts keeping you from sweating which is one of the worst things you can do for HS. Sweating is actually really good for you and HS cause it helps clear out any impurities.
There are several people who have been able to completely put their HS into remission by adjusting their diet. I highly recommend checking out this website http://www.truenaturalweightloss.com/ (but dont buy the book, you can find all the book info for free online) I bought it but it wasnt worth it. The group is actually somewhat helpful so if you do buy the book, do it to get into the mailing group.
You can also try tea tree oil as a medicinal cleaner but be careful with as some people are allergic and can have a more adverse reaction. I was and it just made mine worse. What really works for me is lanolin - dont know why but it helped speed up healing anytime I had an open sore. There are other herbal remedies out there as well. The sad truth is prescriptions and OTCs are like sticking a bandaid on a deep cut. Eventually its going to stop working.
Start tracking what you are eating (something we should be doing already - I'm terrible at it though) See when your HS is worse or seems improved. Try eliminating foods. Its going to take a lot of trial, error and discipline but I honestly believe that if someone can cure themselves of MS, cancer and other incurable diseases by changing their diet, HS can be done too.
I agree dont be ashamed and its okay to talk to your doctor about it. But try to find someone who is educated and open-minded. Dont stick with a doc that wants to immediately jump to surgery.0 -
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-2/0 -
There are some really great tips here. Welcome, everyone, I'm glad you've all found this place! In addition to diet, I've found some things that are really helpful for me. I'm not sure if they will help others, as it seems like everyone's case of HS is different. I have a ritual I do daily where I check each of my main areas for any abscesses that have begun to swell up. I drain them before they get big and painful, and then I hop in the shower. I wash the area with antibacterial soap and dry gently. Using this method, I still flare, but it's only the brand new ones that catch me off guard now. The one's I didn't know were there until they were already big and painful. But those are few and far between.0
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Hello everyone, I really thought I was taking a shot in the dark, but im so glad to have found you all!! Im a 28 wife, and mother of two! I have been dealing for about 2 years and got the official name about 2 months ago. When I first started getting them, they were just there. No pain just a bump under my arm, breast ans sometimes the thigh. Then they got worse, bigger...painful. So in December i have incisonal bipospy under my arm and breast. It seemed to simmer down. My Dr was sayng that weight loss would help, so I started working out, but now they are back with a vengence. Over the weekend I help my sister move and needless to say Monday morning I had a huge painful bump in both armpits. I tried the warm compress and it had gone down some but not all the way and it still hurts. I really dont want to keep running to the dr but at this point, I dont know what else to try. Any suggestions/comment all or any help is needed.Thanks :-)0
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Folks,
I just want to say that although there is some nasty literature (online and printed) out there that weight is a cause for this disease, it is absolutely not true.
I have been a member of a HS online community for over 10 years and there are people on there that were born with this disease. There are people who have never been overweight in their lives and still have it.
Yes, many many of the women (and men) who do have this disease are overweight ... but it is not a cause of the disease. There is some research about weight being an exacerbator of the disease, but it is not a cause.
I know that when I lose weight, less of my skin rubs against other skin which does reduce the number of bad lesions because, lets face it, abrasion is one of the causes of a cyst.... I know when I was younger and I wore stockings and then walked home from school and my thighs would rub against each other with the nylons in the way... OW!!!! a huge deep cyst.
We have enough of a body image problem than to have our doctors tell us that our nasty disease is caused by the fact that we are fat. Just not true. They have read the misinformation and they don't really know.
This comes straight from Hershey Med Dermatologists that ARE specialists in this disease and take initiative to go to symposiums and also to host drug trials.0 -
I took a shot in the dark, wondering if there was a group for this. So glad there is!
I was diagnosed last November after dealing with a panful abscess near my right armpit which drained and was packed with gauze strips in Urgent Care. Then the same area developed a boil which I used warm compresses on, and that popped, but it never seemed to heal up and close. Then the issue seemed to develop in my left arm pit; it started out with openings or skin tears and just got progressively worse. It literally got to the point where it took me nearly an hour of starting and stopping to get out of bed.
When I finally bit the bullet and saw my doctor, she had a wound care specialist come out and see me. But I think neither my doctor nor the nurse knew what this was. I was told it could have been a Staph infection, or that it was caused by my deoderant (neither of which were true).
Anywho, the wound care specialist decided that I needed all the little pockets of abscess packed with strips of gauze. I suffered through that on Vicodin and then Percocet before I couldnt suffer it anymore and the nurse and my doctor decided I should be admitted to the hospital to have the packing done there, where I could be put on something stronger (aka dilaudid).
Only after I had been admitted, and poked and prodded by multiple doctor's and nurses, did I finally see a surgeon (as they thought I might have to be opened up even more to facillitate the draining). And it was he who diagnosed me with Axillary Hidradenitis Supparativa. And thankfully he said no further packing of my wounds would be necessary. I ended up being in the hospital for 10 days due to infection in the wounds in my underarms and being anemic.
But at least from then on out I was given something adequate for the pain Im in. I hate taking strong pain medicine (as it messes up my tummy something fierce), but I hate being in pain more. lol
Afterwards I was sent home on IV antibiotics with in home nursing care once a day.
The surgeon I've been seeing says that I don't need surgery for the affected areas, but I just have to give it time to heal. Nothing I have ever experienced hurt as much as this did. I'm just glad that I now know what caused all of this, and I know that I'm not alone.
Sidenote: Ive dealt with issues in the armpit area since I was a kid, but I always associated it with something topical. Now I know that it wasn't.
Anywho, hello all! :-)0 -
Goodness gracious ebby, sounds like you've been through a lot! Our group is small, but we're here for each other to comfort and listen. I don't know where you are located, but if you're on the east coast of the U.S., you might want to consider contacting the National Organization for Rare Disorders (NORD) to see if you can enroll in the current clinical drug trials they are doing. Your case sounds more severe than mine, but there is an antibiotic unlike any others they have tried yet that has shown some promise. Like your hospital visit, it is done through IV. If you're interested, here is the website: http://www.rarediseases.org/
I'm glad you've joined our group, and I hope you meet some great folks here. Welcome!0 -
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 0 -
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
