I'd be really interested in the replies to this too. I have diagnosed myself with HS, but I'm really unsure if that is correct. All I know is that every time a doctor sees under my belly or around my groin, where I have it, they are shocked and say it's like nothing they have ever seen before. Which of course makes me feel awesome :/

I am overweight and my belly hangs over, so I get them in the fold under my belly, as well as all over my groin and around my vulva which is pretty horrible if you ask me. At any given time I would say I have 6-8 active swelling or draining sores, plus dozens of dark scars. Sometimes I also get them under my breasts or in my armpits, and once I got a huge one randomly on my upper abdomen.

My sores start out like large cystic pimples. They swell, and are sore, and turn red and hard under the surface, and get to about the size of a pea to the size of a nickel. Sometimes they will just stay at this stage for days and then slowly go down again. Sometimes they will burst and drain after this stage. Sometimes they will get infected or inflamed and turn huge, the size of a golf ball and very tender. After a day or so at that size the middle turns black and looks sort of deflated. Usually at that stage they open and begin to drain blood and sometimes pus. Sometimes it's hard to get them to close up again. I have one now that has been draining off and on since last summer :( Sometimes they drain and go down again, only to suddenly come back a few weeks or months later in the same spot. If they ever do finally go away, they leave a black bruised looking hard scar.

I know you in this group understand and it should go without saying, but I wash the area gently every day, it's not like I'm not clean. I don't know why this is happening. I want to see a doctor about it but I'm so ashamed that I can't bear to do it.

Mine vary. It seems to take only a few days from start to scarring for me. They started under my arms and those were the most severe. Tulip76 described them quite well. Mine tend to be small bumps. Some dissolve without much of anything and then others are filled with pus and blood. Sometimes I have ones that have a white cream like substance. My primary doctor prescribed a cream to use when I feel one coming on, and it does seem to help them from draining and oozing and leaving a large scar. No matter how we try to describe our outbreaks it always sounds kind of gross..lol. I also have outbreaks under my breasts, but I have a very large chest so I have always had irritation depending on sweat level, etc. I also get them around my groin. Mine look like little black heads. Some become cysts and some don't. I have no idea. My Obgyn did not seem too concerned except to ask if they bother me. They aren't pleasant...lol. I have been trying to find a dermatologist in the area who my specialize in HS but trying to become a new patient is difficult. It takes forever to just get your foot in the door. I am fortunate to not have it as bad as some do. I am just so glad that there is a forum to discuss it, because it is not something one wants to share with others who have not had the experience.

Thanks for the explanation Tulip!! Hmm, doesn't really sound like what I get. Mine goes from nothing to pea size bump that's tender (no yellow head like a pimple would have) to full blown 2 inch boil in a matter of hours or at the very least overnight. Once I can get it to soften (could take days) and then get it to drain (or have it drained if it's stubborn won't drain with heat packs), it usually goes away over the next week but this time it drained and left a pea size knot--only tender or slightly swollen when irritated. Never got any black or deflated look to it but it did leave a purple mark on the skin (might be a bruise that'll fade). Methinks I need another opinion from another doctor. Wouldn't that be ironic after all the people that have been misdiagnosed with other things when it was HS to be misdiagnosed with HS when it's a simple cystic abscess. Sigh--but having worked in the medical field, I know so many times the doctors are flying by the seat of their pants because of lack of knowledge (though they won't admit it).

I would say if you are only getting it at the top of your butt crack then it is just sebaceous cyst. Some people have this and never get any other bumps anywhere else. You also can have surgery to remover the cyst. Now with that being said you also could move on to having HS. I started out just having the same cyst as you are talking about. Years later I started to get them under my arms and sometime in my groin area. Now it is very unusual that I get one on my tail bone. Like I said I know people that have had this on there tail bone and never had it anywhere else on there body, and I know other people that have HS just like me and it started with the cyst on the tail bone. Sorry I wasn't much help.

No, not at the top where pilonidal cysts occur--about half way down on one side. I honestly think sitting so much during the day is part of the problem--so I'm trying to get up and move around as much as I can--but, well.... I 'occasionally' get one pop up in the groin crease area (which surprises me because I'm mostly prone to yeast infections in the skin fold there from sweat, but they're usually fast healers--this one however drives me nuts. But thanks SRG--it COULD be just the beginning and hopefully it'll stick at that level for most of the rest of my life if I just be careful with it and treat it accordingly. Just lost 30 pounds--before this popped up too lol. But since I already having fibromyalgia, sjogrens, IBS and raynauds--all autoimmune diseases--I suppose you can't count out another one starting to manifest.

This is how it all started for me too, although I wasn't diagnosed with HS until 20 years later. I had my first "Cyst" on my A** when I was 10 years old. And it would drain/leave a puffy scar/and refill and I would get it again, months later. Then it started to move onto my groin, inner and outer labia, and back to my A** so YES, I do Believe that is what you have....and your second diagnosis was correct. HS is not very widely known sadly and to some doctors it can look like a "Regular old' Pilondial Cyst'.

Thanks Respectful, I'll keep treating it as such and since I'm 55--maybe it'll just stay to this stage. (fingers crossed!)

I don't know if I'm much a typical case, I had an extensive network of sinus tracts so quickly that I never really got to experience Stage I of HS much, then I've had various differences in things over the years that don't always match what others go through. It's been a long time since I've had cysts or boils that actually drain, although I get a lot of drainage from time to time from shallower lesions, and at least a little drainage most of the time (suppuration, as in H. suppurativa).

I don't know what to say about diagnoses. The HS diagnosis was a godsend in many ways back when I was diagnosed, to be able to learn about it or refer someone to literature so that they could understand a little what it's like written by someone who could explain it better, and especially to find out the limitations of the disease... But the diagnosis was also when doctors stopped trying to help, they go look it up somewhere and there It Is Written that there's no cure, and if you're lucky maybe you take home some Doxycycline even if the doctor has no idea what it's going to do for you exactly.

I almost wish I'd never gotten the diagnosis now because somehow it seems to confound them how to disentangle infection from HS. Nobody is denying that HS can be complicated with all kinds of infections or that antibiotics have been used with appreciable success, yet I just had my doctor tell me point blank he wasn't going to treat HS with antibiotics. I didn't really ask him to but I certainly wanted any painful and troublesome infections treated that way. This is... interesting... that if I have a Staph or Strep infection as part of HS that it's as if doesn't need to be treated now that "it's HS" - which it is not, it's a different thing!!!!!

Unless it gets out of hand in a potentially life-threatening manner. Then they can think smart stuff like, "HS is not life-threatening therefore it is not HS" and now they can do something about the HS they allowed to a. go infected and b. get out of hand. I never quite know whether to thank them for saving my life, or kick them in the shins for allowing it to get to that point in the first place.

Somehow the two things - HS and infection - keep getting lumped together like that and I keep trying to pry the two apart for the doctors because I'm increasingly sure that the things that are really the most debilitating about my case are probably infections, and those CAN be treated if someone finds out what organisms they're aiming at for once. I think that has actually gone well to just be stubborn about my concerns over what significant infections I might have, since it finally resulted in the offer of a referral to an infectious diseases specialist. I'm just waiting for things to calm down a little around here before getting in the phone book.

It's what I should have done in the first place but not having any medical background I was a long time thinking stuff that's probably silly, like infectious diseases specialists are for when you come home from vacation with some rare tropical disease. I've never gotten a referral before in 10 years with HS, though, so I'm attributing that to being as obsessed about it as necessary... "Doctor, I'm losing sleep... I gotta know!" lol.

I don't really want to bag on doctors, though... The more I learn, the more I see just why HS can be so challenging for them and to make it worse they basically know what they're taught, naturally.

So you know... Do you have HS? Well, if that diagnosis helps you to get help, sure. If it turns out that it's getting in the way of getting help, I'd try to avoid it or set aside and try to shift the focus to any part of the problem that doesn't have "incurable" written about it in the doctors' manuals.

Fingers crossed here... I'm hoping that's good advice, it's all still pretty new to me.

Also I'm sorry if that's off-topic from your other questions. I'm not sure what to tell you... I keep trying to suspect that differences in symptoms like cysts or boils might be due to smaller differences in infections - what species or strain of Strep, for example - but that is NOT at all a well-founded thing for me to say yet. It might be something to look into with someone who can help with that, as I'm hoping to do in the coming weeks, as I'm very curious what's causing these stubborn and potentially dangerous cysts.

I don't know if this will lend any additional perspective, but I think what I have may actually be PFS or Fox Den Disease, which is an interesting distinction to try to make with HS because some literature doesn't distinguish at all, and the literature I've seen that does bases the distinction solely on the miniscule difference in the depth of the affected tissues.

It's not something I want to nickpick, because PFS is probably even more obscure and twice as hopeless as HS, even if it's the very same disease as HS, so I'd rather go with the HS diagnosis. So you know, it all gets goofy and semantical... Whatever helps you get help, apparently that's my new motto. :-)

Welllll it could be Hs in the beginning stages or it could be a simple cyst. Time will tell. My HS started with the occasional single lesion and then over the course of a couple years became 2 or 3 lesions at a time, then 4-6 and they just kept increasing in number and in frequency to the point I had lesions more often than not. I would be very hesitant to call HS so early in the game, but your doc may be being very pro-activce.

Hope this helps and good luck to you!

Tulip76 try health grades. Most times they specify what the dermatologist deals with.

Oh, good idea photographer17! I'll try that, I still have to get brave enough to see one but that's a great way to start.

Tulip I'm sorry to say but you definitely have HS. I'm so sorry! You should find a dermatologist and go in and TELL them what you have. That's what I ended up having to do.

That being said...there's very little they can do. Doxycycline, monocycline (sp?), topical clyndimiacin (again sp?).

You may want to look through the comments at the supplements and regiments other people have had luck with. Supplements, diet changes, hibicleanse...etc etc...

For my two cents - I take - Tumeric capsules, zinc tablets, cayenne pepper capsules. I drink 5-6 cups of green tea with lemon every day, plus a TON of water. I am making sure I sleep 8 hours a night. I shower and wash my problem areas with Hibicleanse. I pat them dry then go lay under a fan and mess around on Facebook while I air dry completely (or blow dry on cool setting). I switched to Crystal deodorant spray and that seems to have helped under my arms. I have just recently stopped eating gluten and dairy (like the past 4 days), so I don't know if that will help or not yet. I also...so for your groin area, I break out when I have a yeast infection. So I watch that and try to catch it before it gets me. Also I have gotten my blood sugar under control, which has helped.

Some people don't eat any simple carbs at all. And they cut out all veggies from the nightshade family (tomatoes, potatoes, peppers etc etc). If cutting out gluten and dairy isn't enough I may have to try it.

Thanks for all the comments folks--I haven't been on here since December because I didn't have so much as a spot since then. However, three months later lol. So I've got an alien today and no closer to knowing if it's HS, cysts or whatever