This might give you a little more info. http://www.hs-foundation.org/
I have enjoyed this wonderful disease for over 40 years...I am post menapausal, and still enjoy break outs...sorry sarcasm helps a little. I know how painful this crap is...I have never resorted to surgery though. The stages, there are 4, the last tunneling. As for hormones??? For me...I use to break out two weeks before periods, now it just happens whenever, no rhyme or reason. I hope the site helps. People on this site can really help also. God bless and hang in there.

Hi ya!

Everything you've said I've felt and understand what your going through. I've missed most of my daughters first year because I was in bed trying to get better.

I'm going to tell you what I've done as in research but you need to try all sorts as some things will work for some and others it won't.

I've seen a hormonal specialist privately, she said although my bloods came back fine - with the fact that i had absolutely no problems when I was pregnant with my daughter, she said let's try finasteride with the pill. She said she can't give me a high dosage of estrogen as I have a womb and it would send me all over the place. If I didn't have a womb she said she could give me as much as I want! The finasteride is to help lower my testosterone levels. I started getting itching so stopped for a few days and then had a bad infection so I wasn't able to take them when I was on my doxycycline. I will be returning to them soon. So I can't really tell you if they've worked or not.

I've had 6 surgeries 4 drainage and 2 gland removals. The glands they removed - I've not had any flare ups again there. However, the others that they drained took weeks sometimes months to heal. My plastic surgeon wanted me to have a 7th op recently to drain the areas again and remove all "bugs" that he feels some that have been left. He said they would need to go deeper and leave them as open wounds to heal rather than stitching up. I declined for now as I told him I physically and mentally can't deal with it right now. He wants to see me in a month but has stated that if I'm worse in that time I will need emergency surgery :(

The day after I saw my plastic surgeon - I saw my dermatology consultant. She had a look and stated that she thinks it's linked to my hormones. (It's different things for different people though) as I get them a lot when I'm due on my period. And also the fact I had no problems during my pregnancy but as soon as I gave birth, I had three come up!! I was a smoker before I found out I was pregnant. I quit as soon as I knew I was pregnant and didn't start smoking again until my baby was 4 months old (gutted I started up again to be honest!) but my Dermo said that smoking does not cause it nor was the amount I smoked (5-10 a day) would make my H.S this bad.

She put me on metronidazole and dalacin T (she did state that the antibiotic I've been given is rarely given out, same as the finasteride as that usually is never given to women apparently!) I'm seeing some improvements with the metronidazole and dalacin T. Not just the swelling but the appearance as well.

I know I need to lose my baby weight but like you I can't exercise to lose it. My dad has this condition as well. I had my first flare up at 24. Most get it when they hit puberty. I once read that it is something to do with puberty triggering something off with the glands. I was always skinny and never had any problems. Only when I started to put weight on.. Not a lot might I add. So I'm desperate to lose the weight to see if that helps. Swimming is supposed to be good (when their not open though) as you are sweating you are in water so it keeps you cool.

Try under armour underwear and tops, trousers etc. I've ordered some as it's supposed to help take the sweat away. I get mine in my groin and bum!

There is no cure, it doesn't mean your not clean at all. Look on Wikipedia it has a very detailed description of H.S and it's stages as well. I remember years ago my housemate saw someone on tv that had H.S in their armpit and he had to have a skin graft done. She said "oh that's disgusting" I never told her at the time that's what I had. But now I tell people. So more people are aware of this condition as most people have never heard of it and I've come across some many doctors who haven't a clue about it or never heard of it! It's taken me years to find the doctors that I have now. Some people have found ways to keep it at bay. You know your limits and shouldn't go past them. I've done that so many times and regretted it dearly as it's meant I spend weeks recovering!

I have been told also about some injection. Apparently it costs about 5,000 an injection! My plastic surgeon and dermatology consultant have said that you need to have it injected every 12 weeks for I think a year. But they said they have had H.S patients not have any problems for a few years but have stated it has come back for some while others are still in the clear. They have yet to offer me this as they are trying every other method first. As it's so costly.

I'm avoiding a major surgery that my plastics team have suggested which is removing the whole area in my groin and bum which would require skin grafts. They said it would take months to heal and even then may never heal properly. The other problem when removing glands (not drainages) is that once you remove them from one area they will come up in another. So in my case, as they stated - if they removed them in my groin and bum they will more than likely come up in my breasts, armpits or stomach even! There everywhere the little buggers haha.

Sorry to waffle on but I see so many people struggling and I've seen a lot of different professionals who have explained a lot to me and we have worked together to try and find solutions.

I use special dressings as well that protect and bring out the infection if there open. If you want to know what these dressings are - let me know and I can email you. They are expensive though.

Good luck!!

Also try the palo diet I've heard it's worked for quite a few at keeping it at bay!

Thank you for all of the advice! I really appreciate it as I am willing to try ANYTHING! I was in the Emergency Room on Sat/Sun Jan 25th and 26th, then on Monday thru Friday Jan 27th-31st I was actually admitted into the hospital as "in-patient" and had to have surgery and IV antibiotics because the lesion/abscess in my groin turned into massive cellulitis with edema of my left groin and left upper thigh. I couldn't believe it. It's never happened to me this bad before! Now I'm home but have to have 3 showers a day, with 3 packing and dressing changes a day with oral antibiotics and oral pain meds. I truly pray this doesn't happen to me again!

It's hard to say the best type of doctor to go see for this crappy disease. At the moment, I am seeing a dermatologist and a plastic surgeon. Both of which have contradictory views on what I should be doing (Derma thinks I should keep trying different assortments of antibiotics, while the surgeon thinks that the antibiotics are "magic pills" that are not going to treat my disease. He believes that the cysts need to be drained as they come). Honestly, neither of these treatments have really worked out.

Just so you know, I see one of the doctors that sits on the board for HSF

http://www.hs-foundation.org/about-us/

I will say this, I was on accutane for 3 separate cycles throughout my life (I'm 25 now). Accutane is a bitch to take, bloodwork plus doctor visits every month, not to mention the severe side effects associated with the drug. Once I had been on the drug long enough, and my symtoms seemed to mollify, I would experience a period of 6-12 months where I didn't have any pimples or cysts. That was nice and all would seem well. But, sadly, there is no cure for HS, and my cysts came back bigger, badder, and more painful. Fuck my life :/

The problem with HS is that it dramatically disrupts your lifestyle, but it doesn't affect your biological processes (like breathing, eating, etc.). If you have a draining cyst on the top of you butt, the last thing you're going to think about is exercising, or having sex. If you work a job that requires moving around a lot (I'm a manager of a starbucks) you have to constantly be worried about feeling sharp pain from making simple movements (I had a cyst in my armpit, and every time I would grab a cup, it would feel like knives in my arm).

This is why I am having such a tough time dealing with HS personally. I want to live my life, exercise, be healthy, sociable, date, have sex. I just want to be normal.

But you know what, everyone has their cross to bear. I am not religious, but I think that every human being is fighting their own personal battle. And for us, HS is that battle that unfortunately turns into a war with no end in sight.

Sorry to be a debbie downer, but you all know where I'm coming from. Where some days you just want to give up, lay in bed, and pray that the pain will go away, or the bleeding will stop. I know that the right thing to do is to get off my ass, suck it up, and live my life the way I want to. It's just hard sometimes.

Sorry for venting everybody, I hope you are all doing well.