Any other Hidradenitis Suppurativa sufferers out there?

LucilleCouch

Hi there, I have it, for the past 15 years. Had surgery, changed what I ate and exercised. Flare ups are a lot less but when I do flare up its bad.

lmcg119

Hello all. I was diagnosed with HS about a year ago, at age 29. I had symptoms first appear in my armpit in my early 20s. They remained under the skin's surface and ended up improving after a few years. Unfortunately, this is when they started in my groin, and they had progressively gotten worse, often times coming to the surface and draining. I also occasionally had a bad flare up on my breasts. I mentioned this to every single doctor I went to see, regardless of their specialty, thinking that one doctor would finally make a connection between this and several other symptoms I was presenting with.

It was a new gynecologist that listened to me and asked me, "has anyone ever mentioned Hidradenitis Suppurativa to you?" At this time I also was diagnosed with PCOS. My first treatment was to go back on birth control pills to regulate my hormones. Also, I was advised that any amount of weight loss could improve my symptoms, which can be quite difficult with PCOS, and I was already a very active person and exercising 3-5 times a week. I try my very hardest not to let the HS get in the way of my exercising, but unfortunately, sometimes the pain is just too much to "push through".

I've been taking Turmeric supplements for about a year now - since then cysts that used to last for 2 weeks will last 1 week. Flare ups occur less frequently and the cysts come to the surface much sooner. I also take Metformin to assist in the weight loss process with PCOS. It's a diabetic medication, although I am not diabetic. I have seen improvements with my PCOS and HS symptoms since starting Metformin. I've also adjusted my diet to include mostly non-processed, fresh, organic foods (and tracking calories on MFP). I try to eat a lot of protein and limit carbs, especially processed carbs. When I have bad flare ups I take Doxycycline, although the dermatologist prefers that I take it all the time. I use topical clindamycin gel, antibacterial soap, and make sure I shower immediately after exercising. I love the beach and the summertime, but make sure that I am in the AC as much as possible. I'm in the middle of my laser hair removal treatments in my groin. It's been 2 months since I've started treatments, and since then I've only gotten one small abscess in that area. I have however, had a flare up on my breast, and had to get my first abscess "professionally" drained on my buttocks.

I'm going to try the zinc that others have mentioned on here and heard that chia seeds are also helpful - plan on trying them as well. I'll also be moving forward with laser hair removal under my arms. Although I have not had flare ups there in almost 10 years, I'd like to take any and all steps towards preventing any future cysts from forming there. I do believe that it is possible to better control HS with the right balance of treatments. It would be so much easier if there was a cure of if removing a cyst would prevent others from forming. It's a great idea to share stories and treatments on here and I look forward to any advice from others!

TinaMae86

Glad I ran across this post. I have had this since I was prolly 13. When it first started it was only every once in a while a "boil" would pop up under my arms, then nothing for a couple months, so it took me a while to realize it was really a problem. Now at 26 I constantly keep them and they are so painful. I have had a couple on my inner thighs but always keep them under my arms. I wish there was some relief!

Emma_L86

Glad I stumbled upon this post also.

I have recently been diagnosed with HS after only having symptoms for the past year. I had one flare up on my hip which took 2 months to heal fully, due to being refused appointments by the receptionist at the doctors as they were under staffed and have too many patients. I was almost forced to go to A&E to get seen by someone, however my mother (a nurses assistant) took me to the doctors and demanded someone take a look at my wound.

Treatment wise so far I have been given 3 types of antibiotics, all on a 2 week or a month trial. I took my last set a month ago and the HS has flared again. I was told by the doctor last month that I may have to be on a life long cycle of antibiotics, which of course impact the immune system as well as the kidneys and liver.

This condition is really embarrassing and has impacted on my relationship with my boyfriend. Along with this and the stress of university work has made my anxiety levels sky high

My GP also mentioned that they would test for polycystic ovaries. Has anyone recognised a link with this?

nichi123

I've suffered for years and years. It sucks and can make life so miserable. However, I got told by my specialist last year to lose weight as he has never seen anyone like 'Twiggy' with this condition. *kitten*. So, I'm losing weight but still have the condition just as bad.... I've been hospitilized many times because of it. I just hope it improves....

HarleyQuinn26

I have it. I got diagnosed with it a few years back and my doctor kept telling me that if I lose weight it will go away (because it is not genetic for me but weight based). So I lost almost 40 pounds last year and it cleared up along with my depression and other medical conditions. But since I gained the weight back it has come back and is starting to wreak havoc on me again both physically and mentally because the depression is coming back as well. I would join a support group for this if there was one. Although its a rare disease, you are not alone.

If anyone wants to add me feel free.

SetecAstronomy

I had surgery for it (not knowing that's what it was) back in the early-to-mid 90's. Right armpit. Only thing I truly remember about the surgery is that the anesthesia that was supposed to knock me out didn't knock me out right away and I felt the first parts of the surgery. But that's off-topic.

lmcg119

Hi Emma_L86 - I have Polycystic Ovaries - my HS and PCOS symptoms both presented at the same time and progressively get worse and better together. I'm fairly certain there is a connection between the two. From what I've read (and I understand that I can't believe everything that I read online) both have been linked at some point to hormonal imbalance, perhaps androgens. Be your own advocate and push for the right treatments and for the right doctors. I've been advised to be on antibiotics all the time as well, but don't think that is the best treatment for me. I do take them when I have a bad flare up, but also take more natural treatments on a regular basis. I believe in Western Medicine and natural treatments, and finding the right combination of treatments is key.

366to266

I was interested to read up thread that "One thing that REALLY helped me was cutting out refined sugar."

This is my story.... I was low carbing but fell off the wagon in March. Started eating a lot of carbs, including sugar, potatoes, rice, chocolate, wheat. After about 8 weeks of this, got this horrid thing in my armpit, and then in other places. Doc says it is Hidradenitis Suppurativa. Read up about it, and it sounded ghastly. Dreaded the thought of having it for life.

Anyway, I finally got back onto my low carb diet and am now on about 80% fat, 15% meat and 5% low GI carbs (salad). The Hidradenitis Suppurativa I had has completely cleared and there are no signs of it anywhere else.

kriskurucz

I didn't read all the posts - I just skipped to the most recent ones, but I got my first abscess when I was about 20 (I think), I am now 37. In 2002 I went to the dermatologist and he called it acne and prescribed accutane and that was no help. Just a couple of years ago, my gynecologist saw it on my inner thighs and finally gave me a name for it. She said to use tea tree oil, so I tried it, but itching was unbearable, so I stopped, but i do think it was helping, it just made me so incredibly itchy. I went to a dermatologist now that i had a name to the disease and again no help. She perscribed Clindamycin, but that didn't work either. I have just lived with it thinking that nothing can be done to cure it. Today I found this web site and I am anxious to try some of the home remedies. http://hs-mytreatments.weebly.com/ I recently had blood work done after one of my visits with my PCP and my red blood cells were high and I am kind of wondering if this is related after doing reading on the web site in this post. I am anxious to try some of the home remedies that i have found today. It is a very embarrassing and debilitating disease when there are outbreaks, I feel for everyone who has to endure the pain and ugliness of this abscesses. Good luck to everyone.

marshaelise

I am so happy I found this website. I have been a myfitnesspal member since December 2012 but became lazy in May 2013 logging my meals as I should.

I remember getting my first boil in one underarm pit at age 15 and the doctor lancing it and draining it. During my early late 30's I developed them again 1 week before my menstruation every month. The primary doctor at that time always told me to ignore them. In my early 40's I began to develop 2 or more at a time in my upper inner thigh area only. They came frequently, were painful and left purple marks afterward. I never tried to burst them since the doctor told me if I did, the poison would go into my blood stream. A dermatologist gave me antibiotics to take for 1 month. They did go away for about 6 months but came back like a vengence. I am so embarrassed at the sight of my inner thighs. As I reached my 50's they still occurred but not at such a fast rate.

I am now age 60 and for the past 5 years I have noticed that when I eat carbs,and sugar products 2-3 days in a row, the HS returns. I began a new diet in July 2013 recommended by a nutritionist to keep my A1C blood level at a normal rate and to lose weight. This "Mogul" diet means no sugar and carbs between the early hours of 9-4 pm. In the evening a small snack is allowed. In the past 6-7 weeks, I've lost 12 pounds, went down a size in clothing and have not had any HS. In the past 2 days, I broke down due to job stress and ate a donut 2 days in a row. Today I developed one boil in my inner thigh and it is sooooo painful. It's the size of a marble underneath the skin and it is such an annoyance especially when wearing pants.

I guess I will have to give up sweets or eat a VERY LIMITED AMOUNT to avoid this problem. One doctor told me several years ago, HS is connected to diabetes. My glucose level is within normal limits, but I may insulin resistant or pre-diabetic. It's genetic on my father and mother's side of the family and I hope I don't develop this disease.

marshaelise

I too will be resuming my diet of to avoid these painful boils.

robinellis

bump as i want to read this thread when i have more time!!

leilam29

Hey all! I have had Hidradenitits Suppurativa since I was at least 20 (maybe before, I wasn't really paying attention to my body back then!) and am now 33 years old.

I write a blog about how I manage my life with HS and there are links to many other resources out there to help fight this horrible disease. There is no known cure and the one thing I can say for sure is that what works for one person may not always work for another. it is a long war, but you can win the individual battles if you start paying attention to your body's needs and be kind to yourself!

My blog is www.healinghidradenitis.com

Hope to see you all there

squishybarb

Hey everyone,

Glad to see all of the support.

I too, have HS. I've had it since I was a little girl.. maybe 6. I can remember my aunts trying to put needles in them when I was little because we had no idea what they were, and just thought they should be popped.

Then I got a huge one behind my ear and my mom took me to the ER. The tech was a d*** and he said it had to be lanced. I was 10, maybe. He scared the living you-know-what out of me. The numbing agent didn't work correctly and I felt it. Since then I break down and have an anxiety attack every time I have to go get one lanced. Thankfully, my current doctor is AMAZING! And she would never cut on me without knowing 100% I can't feel it. I love getting tattoos - but the minute I get a cyst that I know I can't take care of on my own, I start to lose my composure. Amazing how something so "small" can mess up your psyche so much as an adult.

My inner thighs are scarred and bruised permanently. They started there, and moved to my "cleavage" area in high-school, as well as on my neck and behind my ears. Now they're "only" under my arms (never had one there until I was 17 - worst infection of my life) and in my groin region. My #1 trigger is shaving, then hormones and stress I suspect.

I'm allergic to all of the main antibiotics used to treat skin infections, cillins, cyclines, bactrims, etc. So I try to do my best at taking care of them myself and avoid shaving with a "wet razor" at all costs. Hydrogen peroxide is my BFF before and after I shave anywhere.

My doctor and her PA both tried to get my medical insurance to cover laser hair removal, but they've denied me and said it's "purely cosmetic." Yeah, if they only knew..

I've recently lost a good amount of weight, and eat pretty healthy. I still love caffeine and I imagine it would be beneficial for me to stop. I don't drink, smoke, chew, etc. I'm active, and I'm on BC pills. I don't get them nearly as much as I used to. If I shave, sometimes when I'm super stressed, or right before my "cycle," I'll have one or two. I think I have it pretty under control and I'm so very thankful it isn't as severe as others.. but it's still difficult to deal with sometimes.

I also had guttate psoriasis due to strep throat covering 90% of my body, and a couple of other minor things that seem to be related to auto-immune disorders, but all of my blood-work has always come back normal. Maybe I'll never know what's really going on in there.

I think it's just a life-long thing for me and I'm only 21. I just pray it stays manageable ... I would be ecstatic if they could find a cure sometime while I'm alive though! lol

I'm always open to talk if anyone needs any support. Glad to see we're not alone.

Best wishes to you all.

902sexxi

Fellow sufferer here. This disease can be shameful, depressing and life altering at times. I almost forgot I has until I lift up my arms are am reminded by the leftover scars. So disappointing. I can say that since I've lost a bulk of my weight I have not had one of those painful underarm flare ups I years! I remember getting the big golf ball sized hard boils under my pits, waiting for them to soften and then applying hot compress to help it drain. I'm tearing up just thinking about this, people don't understand they think your unhygienic. Not true! We all know the drill. Thin people get them sometimes as well but I've noticed (in my experience) that mainly overweight or obese individuals suffer the worst (my experience/observation). I've recently gained back some weight and guess what came back? Yup! But this time, not as horribly as it was when I was 70+ lbs overweight or obese. This time I got some in the panty line area, and yeah sometimes when I workout extra hard it flares up! What a pain! Anyways I type this to convey that there is hope! Losing weight isn't a cure all but it has helped me drastically! This recent flare up is a gentle reminder to lose that weight! It's not just vanity weight! I'm grateful for all the suggestions and I will be trying the olive leaf extract! Sounds promising, let's keep positive (we know what stress and negativity can do!)!

marler1989

Hello everyone,

Nice to see a thread going on the condition!

I too have the condition, for what i believe is 6 years now since i was 18 but it was chronic for 3 years of that, in may 2013 i finally had surgery on the left armpit reconstructive plastic surgery, 4.5hours resulting in 43 stitches a huge area worked on and the end of this month november 2013 i will be going in for the right side, i pray that once these two areas are removed that enough of the infection will be removed from my body so that elsewhere doesn't flare up.

It started with rashes in my head hair and on my bum, doing sweaty warehouse work at the time i thought it was the sweat and constant moving about, a year or two later i realised it had just been a sign of the start, over the years ive seen a couple GP's, surgeons, head surgeons, dermatologists, plastic surgeons etc. etc. etc. i had to go private as the NHS was failing me so completely that by the time i got to an escalated appointment the condition had worsened beyond the particular consultants capabilities.
After seeing a private dermatologist and trying various combinations of medications, diets (worst of which the paleo diet) herbal treatments such as turmeric etc. nothing would help and i was still suffering, i remember nights of losing so much blood id have literally several hand fulls of it at the bathroom sink and occasionally losing so much id pass out, which was in a way a blessing as normally it was so painful i could barely sleep.
The only thing that quietened it down was the first surgery.

I got the condition at a chronic level on both armpits, ripping the flesh completely destroying them, i was told that this is extremely rare when it comes to the condition and that most sufferers will never come close to this, but its a warning it can happen, low level bumps under the skin formed on my tail bone and have never gone away, only occasionally flaring up and i once had an outbreak on my inner thigh pelvis region which flared so bad i couldn't walk for a week but has fingers crossed an touch wood never repeated its actions! I understand these are the areas the condition effects due to the specific type of hair follicles involved.

They say that smoking cigarettes, being overweight and age effect the condition, It's also meant to be more common for a lady to suffer with the condition, which was even more puzzling given that im clearly male lol have always been healthy, slim it started at 18 and although i used to smoke (quit in jan 2013) it was always only socially.

I still exercise 6 days a week between 30mins and 2hrs a day, i think this is the best form of defense, whenever i stop and have a rest week i notice new growth, the start of trouble! thats what i would recommend to anyone out there not to mention all the other normal reasons why exercise is good for you!!

Im looking forward to the next surgery date and i hope that this will be the end of it, i just wish id known more at the beginning and that there was a greater level of support out there, such as groups or real specialists in the matter or as previously mentioned laser hair removal etc. i wish id invested in medical care/insurance but whose to know how bad a warning rash in your hair can get ay!

I think you can message members on this thread, if anyone wants to know anything has any questions about my experience with it all then do message me id gladly help someone else if i can

MattyB_AZ

I registered just to post here, I believe I have HS, all of your storys seem different because if I do have HS it started on my neck. i think it's something your body is lacking; as for me, I was never active. I have bumps on my bottom, seems like being active is what my body is crying out for. I don't work and I have no where to really go so It's tough. I've been using Hibiclense (Bought from CVS) which seems to help. But, Recently I found this soap on amazon called Asepso which contains chloroxylenol, kills the bacteria in 15 seconds. Also, for people in the UK, Dettol is a nice one. I also ordered some home made soap from the UK on eBay which helped me but it's so expensive and takes 2 weeks just to arrive. On the Wikipedia page it shows Hibiclense seems to work but it's weird, is HS just some kind of unknown Staph infection? I really don't know people. Goodluck.

Edit

My story of HS, I always gamed since like 2010 it was bad, computer for 14 hours a day, sodas, candy and cigarettes. I was never active, I had bad bacne, chest acne, and only a few abscess's around my neck area (where it started August 2007)
It seemed like the sunlight cleared up all of the "small acne", im not sure if cigarettes play a role, it might for some people. recently Ive been eating a lot of potatoes which might be the reason i got 4 boils on my bottom (I was cleared up)
it's really different for everyone I think.

Weird thing is, It hasnt got to my armpits yet, so I'm guessing it's HS or Staph/MRSA/Blood Infection (Sepsis)?


if anyone is interested go to ebay.co.uk and search hidradenitis her Ebay name is organicskinandhaircare

621232

I was recently diagnosed with this as well. I was having a very hard time with this because I was embarrassed to go to the Dr. and I thought these would just go away on their own. I was to the point of only wearing tank tops around the house and I never went out anywhere because I felt so bad. It has been a life style change for sure, but one that was well needed. I am currently doing the Paleo diet with a few tweaks. I do not eat any nightshades, such as tomatoes, peppers, potatoes. I do not eat any dairy, I substitute with either coconut milk or almond milk. I have cut out all breads, which is my downfall. I can eat oatmeal as it does not seem to bother me. I take supplements as well, daily I take a multi vitamin, tumeric, magnesium, calcium and vitamin c. I can not wear normal deodorant so I use a combination of 7 drops of Tea Tree Oil to 1 oz of coconut oil. The tea tree helps heal the infection and the coconut oil helps heal any open areas and helps with scarring. I use Cetaphil skin wash in the shower instead of regular soaps. this has seemed to help alot with the smell that can be associated with the flare ups. This has also helped with the redness as well.

sallyaj

Hi, I have developed this only recently-- under the arms, hairline at my neck, and where the underwire of my bra rubs. Though i recall during puberty hard boils that went away over time.

Try a gluten free diet like the SCD diet. It keeps mine in check. I flare up when I cheat but for the most part it works.