I do and know for sure others on here have one too. Of course I am stage three both my buttocks, groin, and underarms are terribly scarred from boils. But yet the one on my tailbone is always there. Its also for me the one whose odor is the worst compared to all the other ones. I probably should get surgery but can't afford it right now.....however I need probably dozens of surgeries since mine is so widespread.

It doesn't hurt anymore on my tailbone though. I just squeeze out as much as possible while in the shower and moisturize it, put on my gold bond, and wear many layers of underwear under my pants.

I can say this one has just stuck its never totally gone away......may not drain for a long time and seem free of pus but it always comes back.


Dus

wow, yes it's very stubborn it seems. I will show the dr. this on my consultation Tuesday and see what he has to say about it. I don't think I would consider surgery there tho, since it's my 2ns time returning and it's a little draining hole, not large at all. But its painful and every morning I squeeze it and puss comes out, eww. It does have a little odor too. I hope that one heals up like it did the first time. Sucks. Thanks for your input.

*pus

I had that myself and was told it was a pilonidal originally... the cyst/boil was so large without an opening that I had to have it cut open and drained. It did not leak on it own so I never experienced that side of it.

My outpatient surgery the first time I always like to tell as a funny story, cause I had to have my roommate at the time take me to the local ER cause the school wasn't equipped to handle it. The doctor used local anesthesia (I was told I would only feel pressure, not true) but so there I am bent over an exam table and the guy is like "oh you're doing great " etc... and then says "boy, this is the best time I've had all day" and all I kept thinking was well this is just fantastic cause I have known this old fart for all of 10 minutes and I have my pants at my ankles bent over and he's telling me he's having a great time. Hahaha. On the plus side, local anesthesia doesn't do much for me so I felt everything he was doing so I always just wrap it up as he enjoyed the view lol.

Now back to serious...
Before and after it was drained it was one of the most painful things I ever experienced. I couldn't sit, walk, or lay down. I was away at college at the time of the first one, so I am not surprised I was misdiagnosed. But since I have/get the same hot red cysts in my armpits and on my inner thighs I know now that it was hs related.

A few years later it returned, had to have it drained again, but since the second incision I have not had it come back "knock on wood" And if there is a little scar there I don't see it so it doesn't bother me.

I want to say the pain before the draining was worse then after but I think it was just as equally painful during healing because it was packed with gauze. So the same hard pressure.

I did read that after the 2 or 3 time it is manually drained they will suggest a real surgery to have it removed. Luckily I never had it go that far.

I also have one large one that never goes away. It'll drain, and remain then flare up every few weeks. It has been there now for the past 8 months. It can be very painful and sitting is complicated most times.

I do wish you the best. HS is a very life changing and complicated disease. Blessings!

fnkmstrbkim,

That's a funny story-- "I have known this old fart for all of 10 minutes and I have my pants at my ankles.." LOL. So I guess the dr would probably suggest the gauze for me too, I hope not the actual removal surgery. It is painful. Thanks for sharing your experience. Btw, what part of CT are you from? I am in the Fairfield County area.

KrisD09,

Yours sounds like mine. Yes, it drains a lot and it is inflamed. The things HS makes us go thru :/
Thanks for your kind words and input.

Yes I just had surgery on mine last year. It had come and gone since I was 10 for 35 years...I finally gave up. It sounds exactly like a pilondial cyst.

Yes! This is the first cyst I ever got. What happened was I thought do I have hemorraid is that why there is blood in my poop? The cyst went away I went to my doctor told him. He did a colonoscapee. Found out it was nothing inside. The next time I got it I went to another doctor he looked one look and said you have HS! I still have that one there..it comes and goes all of the time. Pops drains builds up sometimes it just sits there half way full. If I bump a wall or get kicked in the butt or something it swells up really big red and sore. I have no other ones on my butt though. That's the only one.

Hi respectful,

I don't think mine is a pilonidal cyst because I searched it online and noticed a lot of differences from HS. I'll know for sure next week. Wow, that's horrible that is comes back. I wish you the best.

Hey Thksexybbw,

Sounds exactly like mine. I was kicked in the butt (by my nephew when we were playing) and it swelled up pretty bad). It does fill up with pus and sometimes I can even squeeze it and it comes out. Hurts a lot too. I may just let that one heal without surgery bc it left once and healed nicely. This is the 2nd time it appeared so I'll give it a little more time. Ugh, fruturating! lol