Hi. My name is Peg - I am 48 years old and have had this for 30 years now. I am sure I had it diagnosed about 25 years ago but the doctor didn't take the time to tell me anything about it... just sent me to another doctor to have it drained,

I had it start on my inner thighs and thought it was just ingrown hairs.

I was recently on Tetracycline for a year to no avail.

I am in generally stage 2,,, I have had one surgery and will never do that again.

Recently saw a blog about the Nightshades possibly being the trigger... not for me unfortunately. Not that I want to give up peppers and eggplant and tomatoes for the rest of my life, but I'd like to be free of this.

My doctor just ran blood tests and found that I have started menopause... hopefully this means that I will soon be past this.

I am currently trying "dairy free" to see if something dairy-related might be the trigger for me.

Nice to meet all of you!

Hi I'm Elinor and im 31. I got my first abcess at 16 and eventually diagnosed around ten years ago.
I mainly get the flare ups under my arms and my groin. My doctor would not put me on a long term antibiotic so whenever I feel a flare up coming on I have to return for a prescription. Im hoping to go and see a dermatologist soon though!
Recently I was at A&E to get an underarm one lanced (total agony...will not be doing that again LOL) and he told me about an op to remove visibly infected skin but warned that I may experience some restriction of movement aaaarrrgghh!!
In addition, my beautician told me to use a product after waxing called tend skin which helps to prevent ingrown hairs and they do not seem to be as frequent-yay!!

Thanks a lot for starting this group, I think it helps to chat to others who know what you're going through!! Great to meet everyone :-) xx

I’m not sure how asthma really effects HS, but some of the medications you take for asthma can, like steroids or cortisones.

Hi, just been reading soem of the other posts- asthma link? I have asthma too, not badly but take inhalers when I have a cold etc! interesting!!

Some doctors are awful...I saw a dermatologist in Glasgow once and when I asked "Why me???" (lol) he kind of snorted and said, well you rarely see them on thin people....not what I wanted to hear haha! I also stopped smoking previously and it did not help, no better no worse grrrr! I reckon its def hormone related (for me anyway) as it is always around TOM- pah! :-)

Kathleen- the tend skin costs around £8-10 per 4oz bottle, I get it from Amazon as none of the local beauty salons sell it, but seems to work great....unless there is a bit of broken skin then you will definately know all about it haha!! Ouch!!

El xx

Sweets, take it from me...take the medication regularly or not at all! Just speaking from experience. Future go's at it will not be successful. I made that mistake

LOL....I'm 29. Oops! Haha.

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

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.

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.

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.