Personal Stores Archive #33

DDate: October 30, 2006

Story

Hi, I have had the problem for over 20 years. I'v been lucky and able to controll it by keeping the wound clean. Here is what I have found works for me. I buy Neutrogena Soap ( Fragrance Free Only ) and wash the wound every day sometimes 2 times a day. Then I apply Triple anti-biotic cream to the wound but never to the open part ( Sinus ). This has worked for me for many years. If I had to guess I would say I have one flare up a year.I believe I went for a couple years with no problems by doing this. Good Luck I hope this works for you. P.S Never use soap that has fragrence in it. That will irratate the wound and cause flare up.

Date: October 30, 2006

Story

Like everyone, I usually search the internet and read all the stories but now I would like to share it with others. Back in 2004 whilst at uni, I had a drunken fall and banged my tail bone. The next day it was quite sore but i thought i had just bruised my coccyx. A few days later the pain worsened until I woke up in agony and dripping in sweat. I managed to make it to the doctors the next morning but they couldn't find anything so they sent me straight to hospital. The surgeon still couldn't see anything but decided to put me to sleep to investigate. A few hours later I had a surgeon explaining it was one of the biggest abcesses he had ever seen. Just my luck! I was only 19 at the time and it's not nice having to wait for the nurse to come round everyday to change your dressings and going to the toilet wasn't pleasant. I carried on getting my wound packed for around 4 months. Eventually most of it healed except the middle. It had healed into an open hole. It was uncomfortable to sit on so I always sat with my weight to the side. After numerous requests, I was placed on a waiting list to see a specialist. So here I am 2 years on recovering from yet another operation. My surgeon made an incision through my left buttock and went into the old wound and removed the dead tissue that wasn't healing and stitched it internally. So thats that fixed. But now I have another very sore wound that doesn't seem to be healing great. At least it is only an incision so it doesn't need to get packed. Hopefully this will be the end of everything after i'm all healed up! My advice is to take lots of time recovering as I went back to things too quickly and kept ripping my wound! Good Luck

Date: October 28, 2006

Story

ok guys, so, im sure i dont have to tell you that this sucks because if you're here, you probably know. so i had my first surgery 2 years ago today actually. i was all stitched up, yadda yadda, didn't work. so then i had another surgery two months later and it was let open. they made me stay in the hospital for the first unpacking and packing so i could have pain killers because it hurt like hell. i came home from the hospitale Christmas eve (merry Christmas to me). so i was okay for a couple months at the most before it started draining again and all that. so my doctor did silver nitrate for what seemed like EVER. ive never heard of anyone else having that done...? anyway- it hurts and doesnt do anything, or at least not for me. so i saw my doctor, eh, once a week for a while. i was finally sent to a colon/rectal surgeon (id been going to a general surgeon- stay away from them, they dont know what theyre doing! or at least not in my case!) and i had surgery #3 april 2007, on my spring break no less. things went great. it didnt hurt or anything. i was free from my doctor not even a week later. im not sure how long we packed it, but it wasnt that long. so things were awesome and i was finally thinking, hey, im done with this. that was until i went to my cousins 8th birthday party this past august. there was a huge blister there; i couldnt walk, i couldnt sit, i couldnt stand, i couldnt do ANYTHING it hurt SO BAD. i felt like i was pregnant because when i went to sit i couldnt bend at the waist so i had to lower myself into the chair! im sure it was funny to look at, but not fun to do! anyway- me being 16 and stupid, i didnt tell my mom because the next day i was leaving to go to the beach with my best friend. the blister went down over night and didnt hurt much at all the next morning, so i went to the beach and completely forgot about it until about 2 weeks ago when it started draining again. so my mom made an appointment with my doctor and i went this past wednesday and ... dun dun dun... surgery #4 november 22. so yea. this bites. my doctor said that the reason for the recurrence is because of hair and all that junk, so he suggested finding out if laser hair removal would be covered under my insurance. geezus. anyway- im glad i found this site when i was 14 (ive posted before) because at that young, i felt like i was the only one in the world. then i found out a friend of mine had one too, and that made me feel so much better. but then i found out she had one surgery and was done with it, and i was so jealous! anyway, thats it :) thankss!

Date: October 27, 2006

Story

Hi I just thought I would add an English perspective on Pilonidal Sinus and surgery. I had my first one leading upto a holiday in Portugal a number of years back. Unfortunately not knowing what it was I just suffered in silence and it spoilt the Holiday right up until it burst. What came out - well as sufferers you know. When it came back a year or so later it was after riding a pushbike for the first time in years. The surgeon later told me that it was common in cyclists as the rubbing can cause the hair to break off below the skin surface and then the rest we all know. On this occasion I had the area drained and I guess what is described here as an open surgery. Lucky for me we have the NHS here and that meant the packing of the wound required afterwards was done daily for around two weeks by a nurse who visited me at home. Not a pleasant experience especially the first packing removal - ouch.

Having had this I thought I would be in the clear but around two years later it came back again. The Surgeon I had this time decided to do a full closed surgery. I'm not sure what it was called but they cut down the entire cleft both sides and removed the dead and nasty stuff the he said they scraped the surrounding skin inside to prevent hair growth then stitched the flap back down. The procedure itself was not too bad but the large fishing twine they used to stitch my butt cheeks together around a roll of padding to keep pressure on the wound was alarming and caused logistical problems for cleaning. That is when I realised my Girlfriend was truly devoted and she is now my wife so something good came out of it. Five years on I haven't had a reocurrence. I keep it shaved with a soap and water razor and the scar had stretched helped by my expanding frame, adding a few pounds has helped. My only regret is that I didn't have the full surgery the first time, though uncomfrtable it worked. My other regret is that I since haven't ridden a bike - well you wouldn't would you. By the way it's also known as Jeep riders syndrome. Steve.

Date: October 25, 2006

Story

Hey, thought I share my story. I had closed/open surgery about 4 months ago. I was healed fully about a month and half after, and currently experiencing no difficulties. Everything is back to normal. The surgery was a piece of cake. Very little pain, im glad i have done it and got it out of my way.

Date: October 25, 2006

Story

Isn't it funny that you always imagine you're the only one in the world with these weird symptoms and then you find a site like this?? Well, I'll keep my story short, as it's relatively simple. I discovered I had one of these pilonidal sinus things when I was at college 20 years ago - I'd never heard of it and I knew no-one else with it. The doctor told me that it could be 'cut out and packed...But' he said. "I'd never have it done myself - it looks really nasty" And just because of this one statement, I put up with years of flare ups and pain. It used to bleed and weep, it was embarrassing and smelly and I hated it. And eventually it got to the stage where I could stand it no more. And I've never forgiven that doctor for putting me off for so long...the op was straightforward, the recovery was quick, and I've not had a moments regret. It never came back and it gave me no further trouble. Doctors really should be careful what they say! So if you're in two minds about it, don't be. It's treatable and I think the recovery looks far worse to the onlooker than it feels to the 'sufferer'. Be glad that it's completely reversible and get on with your life.

Date: October 24, 2006

Story

I'm sure this story is an extreme, and this kind of thing rarely would happen to people who suffer from pilonidal cysts, but I'd figure I'd share it anyways. It started the same as any of the stories you've probably read on here before, pain in my tail-bone region that gradually progressed. I started thinking I may have cracked my tailbone some how, possibly after a night of drinking at the bar and not remembered it. It started out very subtle, but by the next day it was painful enough to keep me from sitting down and making me wince every time I would go from sitting to standing and vice versa. Anyways, I told this to one of my friends and he informed me I might have a cyst there, as he had the same thing in the past... I thought this was trash, and just assumed it was something else.

By the next night, there were no doubts he was right, as the area started leaking a brownish red , disgusting fluid, that I had to run to the toilet and wipe out the next day. After this initial drainage, the pain did subside, and I found myself having to stick absorbent pads (no I didnt go out and buy maxi pads) in my underpants for the next few weeks. I never heard of anything like this, and found my self on this site the next day, which was the only thing that kept me from going to the ER or to a doctor immediatly. The next week, I figured it would be best to make an appointment with a Colon and Rectal surgeon to get it looked at, as the drainage was continuing, not as bad, but still there. They could'nt take me for 2 weeks, so i had to deal with the drainage for that amount of time. Finally the day came to go to the doctor, he wad familiar with the disease, and before i knew it i was up on his table thing, and they performed the lancing, it was very painful, every time i thought they were done they went in deeper and deeper, and by the end i was in a cold sweat and nearly passed out when it was finally over and i had to stand up. He packed the wound up and told me to take out the packing the next day, and this is where things go terribly wrong.

The day after the lancing I took out the packing in the shower, it hurt pretty good, like pulling tape out of an open sore, and there was some bleeding at first, which was to be expected. I got out of the shower and brushed my teeth, while still in my towel, and when I looked down after words i noticed a pool of blood at my feet. OK I think to myself, its just normal bleeding to be expected, and proceed to soak up the blood with the towel and apply pressure to get it to stop, this did not work. I figured it may stop after a while, so i packed up my underwear with 2 layers of gauze, put on an extra pair of underwear and a pair of shorts and a pair of jeans so any blood wouldnt get thru... This didnt work, after two hours of sitting in class, i found the seat of my jeans soaked with blood! I came home and took off everything and called my doctor asap, all the while blood is gushing down my leg all over my floor, and decide the best bet is to go to the ER, which i did. So i go to the hospital and they take me in and clean up the wound, flush it with saline solution and repack, thankfully they used more novacaine than my doctor did for the lancing, and they sent me on my merry way, and wanted me to go back in 2 days to remove the packing just in case it bled again.

So I go home for the weekend and all Is fine aside for some pain and some smell, which is primarily cuz I couldnt shower till it was removed. Night before I'm supposed to go back to the hospital, I wake up while sleeping with the worst case of the chills in my life, I literally felt like I was freezing to death, and noticed I had a high fever. Stuck it out for the night and got no sleep due to being delirous, next day I notice that the area of the wound now smells something like that of roadkill you would find on the side of the road. So i go back to the ER thinking first they will just remove the packing and all will be ok...Not the case, turns out I have a staph infection in my blood (septicimia) which is acting like toxic shock syndrome, so I wound up being admitted to the hospital and getting some hard core antibiotics for 3 days, apparently it was a life threating condition. Hey at least they gave me morpine when they were unpacking and repacking my wound (so unnessessary) so after this they decide i wont need surgery and the infection is gone, so i get out and have to unpack and repack the wound once a day for a week and take some pills, its now been 3 weeks and I honestly dont even notice that the wound was ever there, and I have a check up with my doc in 2 days, but the reason im on here saying this is cuz i have a fever and chills and it scared me and made me think the staph was coming back. bottom line though is when u have this condition get to a doctor and get it treated as soon as u can. if you read all of this thank you, cause the near death and dramatic experience it has caused me has changed my life a little bit.

Date: October 22, 2006

Story

I had surgery done back in 2000 for my first pilonidal cyst. I was 22 years old just out of college living at home looking for a career job. I was in bed one night and I scrathed the top of my crack because it was itchy. As soon as I scratched the top of my crack I felt my underwear get very wet, so I ran into the bathroom and said "did I just have a males version of a period". I cleaned myself up and it seemed to have stopped within a minute. The next morning I was watching tv on the couch when my mom walked into the tv room and I said "mom, I had this bump on the top of my butt and it bled really bad last night, it soaked my underwear." Within two seconds she said "oh no, don't tell me you have a pilonidal cyst." She is a nurse and my dad had one when he was my age, she knew it well. So I looked at her and said " a pi-lo what?" She explained what it was and I saw the doctor and he said it would definitely need surgery. So I did the surgery, the do said he took out about 7 inches of the root and I was out of work for a month and a half because at the time I was a limo driver, sitting on my butt for long periods was not an option until it was almost fully healed. I guess playing fotball and having a lot of injuries and resulting surgeries from those injuries have made me somewhat immune from the pain of the pilonidal cyst.

I am 28 now and about 6 months ago I noticed I was bleeding from that area again, no pain or no bump, just blood. Went to my doctor and he said it looked like the scar never healed correctly, so he sliced it to get it open to heal properly and it started to. Then about 2 months ago I noticed I had a huge bump that looked like a boil and was red and puffy. Went back to the doctor and he gave me some shots in the butt and sliced the bump open, it poured out everywhere. Then he packed it with a 9 inch wick to help it drain some more. Looked like evrything was good but it came back again a few weeks ago, and this time he took more of a chunk out of me and stuffed a 18 inch wick inside it. If this does not do the trick I will need another surgery in a few weeks. I learned so much from this website that from now on I will probably shave my butt every few months and will clean my crack everyday in the shower that it will sparkle. When they say a pilonidal cyst is a pain in the butt, they really mean it.

Date: October 21, 2006

Story

Well, where to begin. I've had a pionidal cyst surgery 2 times now, when I was sixteen and again when I was 20 (now 33). Now, I have a similar cyst that has occured around my navel area. After 2 months of antibiotics the doctor finally opened it up, and I have a nice open wound using gauze, just like the treatment for a pionidal. The doctor found hair in the cyst just like a pionidal. I wonder yet again why this is happening, now for the 3rd time but in a different area. Is this normal? Has this happened to anyone else with a history of cysts? Frustrated yet again....

Date: October 20, 2006

Story

I'm a 20 year old male living with this horrible disease which feeds off my ass. Okay now my problems started back in high school where one day I experienced a pain in my tail bone, at the time I thought nothing much of it but it kept gradually increasing until I was unable to sit or stand at school. I had to go through a hellish 8 hours of twisting and turning on the chair and almost cried every time class ended and had to get up. I was too embarrassed to tell anyone even the nurse so I kept quiet and just went home and sat on the toilet seat for an hour cause it seemed to relieve the pain anyway a few hours later while on my bed laying in the chest against it method I felt a rush through the area and thought I just soiled myself but a trip to the bathroom proved me wrong and I had just drained the ugliest foulest looking blood all over my boxer. For a moment the relief was so greater that I had comepletely forgoten that I was a grown man who had just expirenced some kind of "period" through his ass. Now this was more cause for concern to me than the actual pain so I kept the memories of that terrible day somewhere deep inside me and went on with my life and painfree for the next 2 years.

 Suddenly one day while I was in college I felt the same soreness and inflammation so this time I took action a went to a doctor who prescribed some antibiotics and gave me a whoopee cushion to sit on. Things were okay for a few days but then suddenly in the middle of the night I woke up in terrible pain and thought I was going to die for sure anyway I managed to get to the ER and they performed the knife + drugs procedure and it resulted in huge amounts of puss and blood gushing from my ass like something out of a Tarantino movie. Worst day of my life and this time I told my mother about it and she helped with the dressing and aftercare stuff.

 Now flashfoward to today I felt the same soreness again last night and now I'm typing on this message board because I believe in the few hours I spent dissecting this site, I learned more about this disease than from any doctor or specialist. Yes they all told my to take showers, hygiene, shaving, butt picking and yada yada but to this day I never thought about an external souce for the reason to all the mayhem. You see I think I finally discovered the source to this problem its MEN DEODORANT particulary the spray can variety aka AXE and TAG. Almost 3 years ago I was introduced to body spray by a friend and I bought into it and always applied it generously all over my body especially down under and between the hedges. To this day I hadn't realized that everytime I stopped using this stuff for one reason or another, the crack monster disappered and a few squirts would raise him back from the dead. I am so convinced that from this moment on I will NEVER apply any kind chemical whatsoever to my ass in my life. Finally the truly sad part is that the monster and I have to go at it once more since the soreness continues to increase and day 2 has gotten worse by far. I hope I get through it but as my warning to all males on this board: KEEP YOUR ASS AWAY FROM ALL CHEMICALS!!!

Date: October 18, 2006

Story

I'm Andrea and I'm 22 years old. When I was 14 years old I started feeling feeling pain the lumbar area and soon realized I had a cyst there. The pain became so strong after a couple of days I couldn't even walk, so my parents took me to the doctor who right there and then laid me on my stomach and performed an ambulatory surgery where he drained the cyst. He then told me we should schedule a surgery because the cyst was probably going to come back. Well what he had just done to me was the most painful thing I had ever experienced in my life, so I convinced my parents we should wait and see if I really was going to get it again before scheduling a real surgery. Sure enough about 3 months later the pain started again. I was so afraid of surgery I didn't tell anyone until I couldn't walk anymore and had to tell my mom. The next day we went to the ER and while waiting I felt something wet back there so I went to the bathroom and realized the wound had opened on its own. At that point the Dr that was at the ER did the same horriple process of draining the cyst that the other doctor had done a few months ago. For a second time I was able to convince my parents that we should wait on the surgery (I was terrified of having surgery).

About two months after that the cyst came back and at that point I was so tired of dealing with it I just told my parents we should schedule the surgery. We did and the surgery went fine. I went home and thought I had put the problem behind but two days after the surgery I started a very high fever. The next day my mom took me to the dr who confirmed I had an infection so they reopened my wound and cleaned it. It was horrible. I have a baby now and that pain was worst then delivering a baby. They left the wound open and my mom had a nurse go to our house twice a day for about weeks to clean the wound. Each time it was hell and all I did was cry. After about 6 weeks the wound closed on it's own. It's been 8 years and I still think it was the worst thing I've ever gone through in my life. No pain compares to people messing with an open wound back there. Thank goodness though the cyst has never been back. My scar is still sensitive but it doesn't bother me unless I sit down for a very long period of time. I feel bad for anyone going through this, but even though I went through hell I recomend the surgery because having that thing come back over and over again at least for me was too much to deal with and got tirying pretty quickly.

Date: October 17, 2006

Story

SORRY ITS SO LONG BUT I WANTED TO REALLY EXPLAIN... I am a lifeguard and just started a new job and the chairs that a sit in are hard and i lean back right on my tailbone. about 3 weeks after the job started i felt a random soreness on my tailbone. it felt like it was broken or something, about a week later in excruciating pain i went to the emergency room. about 5 minutes go by as the doctor looks at it and immediately says pilonidal. i had an idea of what it was because i called my mom and she explained that it might be that. at this time i was a 19yr old sophmore in college in North Carolina, but i am from Rhode Island so my mom wasn't to keen on me going under the knife so far away but i thought i could handle it and i needed the surgery because i could not sit or lie on my back. I also experienced back spasms because of the pain. I went under the knife at the hospital about 3 days after the ER visit. I went in and expected a outpatient procedure. I had the surgery and they put me completly under, thank god. I could not of done the surgery otherwise. I woke up in the recovery room and felt good. I was so drugged up that i dont remember much of it. Apparently the cyst was one of the biggest the surgeon has ever seen and he wanted to keep me overnight.

I then went up to a hospital room and was comfortable for a while, then i felt alot of pain so the upped my pain meds. that night it was time for the first dressing change and the nurses may have messed up or something and i started bleeding uncontrollably. at this time my girlfriend was freaking out and i called my mom and told her that i had to go in for emergency surgery. my mom could get off work so my dad flew down that night and he and my mom wanted me home. after a week in the hospital i was fed up with the hospital. I flew home after i got discharged and i loaded up on pain meds before the flight. let me tell you it was the most uncomfortable experience ever. i went home and got the vac there. 4 weeks later i am back at school and still have the vac on. the vac is a pain but it speeds up the healing process alot. hopefully i will be off the vac in about a week and a half then will be able to pack it myself. if you are to undergoe surgery for this make sure you have the time for it. my school is working with me to get work done but i am not sure i can get back on track for classes so i may have to withdraw. My adviceis to get the vac ASAP and keep it clean and packed well and also eat normaly otherwise you feel weak and walk around somewhat.

Date: October 16, 2006

Story

I knew that I had a Pilonidal cyst for years, it kept reoccuring from about 9th grade until the present, about 6 months apart. I was never worried about it, I was more irritated. "Here's that stupid cyst again." I'd go to the Dr. office and she'd prescribe antibiotics and then it was gone again. This happened time again until just recently when the antibiotics didn't make it go away. It was just getting worse and worse, til the point where I couldn't sit down because of the pain!! By the time I finally went to the ER, it was about the size of a golf ball, but it still had not surfaced. The ER doctor told me that he was not going to operate on it, instead he gave me a stronger dose of antibiotics and pain killers, and told me to contact a surgeon. I was able to get an appointment 4 days later, and up until the appointment I was taking pain killers on a regular basis and laying on my stomach so much that my knees started to chafe.

Finally at my appointment my surgeon told me what he was going to do for me: numb the area with lido Cain and incise the area to drain it. I didn't think that was going to be such a big deal. Due to the size of the abscess he needed about 50 shots of lidocain to completely numb the area. It hurt so bad he may as well have just been slicing into me. I've never experienced so much pain!! After the surgery he prescribed me more pain pills to deal with the huge hole I know had in my butt. He sent me home with visiting nurses who came daily to unpack and repack the wound, which was extremely painful. I was out of work for almost 2 weeks, and as I sit here at work now I still have slight pain because the wound has not completely healed yet. And the worst part about this story is I have to go through it all over again, because my surgeon wants to remove the "pocket" that causes the cysts in the first place, because he's certain it will come back again otherwise. So, once I accumulate more sick time from work, I'll be back under the knife. Wish me luck!! And so you know, I am a female.

Date: October 13, 2006

Story

Hi, I am a 52 year old woman named Carolyn, who, I guess was born with a Pilonidal Cyst that never bothered me until I was in my first year of junior college, in the fall of 1972. I have read all the horrible stories and experiences each of you have had and I am thinking is that what I even had? First off, this cyst thing that I had was located in the "right" spot, and it was a family joke that I had the beginning of a monkeys tail, and I wish I had a dime for every time my mother found the need to show it to every visiting relative or neighbor. I just remember it as being a small, shiny pink, egg shape. My mom always told me if it should turn black or begin to hurt that I must see the doc.

As I stated, I was in my first semester of junior college and had taken an archery class, and after class my friends and I sat down on flat cement benches. A severe pain shot from my lower back like hot lightening, and after class I left school and went home. I asked my mom to check my "monkey tail", and she said that it had turned black and that I need to see the doctor. There was no swelling, pus, or bad odor, just painful to sit or to touch. My dad was active duty Navy, so I went to the base in Annapolis to see a doctor, and that experience started my nightmare. He told me it was a pilonidal cyst, and that it needed to be removed. I was scheduled for surgery the next week. I asked if I needed anyone to drive me and he said no, he would give me a local anesthetic. The day of the surgery, butt up, he gave me a local, then started digging, and after a few minutes I started to tell him that I was feeling pain, and he informed me that I wasn't, and he continued to dig and dig, and I started to cry, I could actually feel the knife cutting me, and eventually I passed out. When I woke up I was told I had an open incision with a drain, to keep it clean but don't get it wet. The butcher sent me home without any meds!!! At my follow up the following week I did see what he took out, and it was shaped like a football with a tail about nine inches long.

Date: October 13, 2006

Story

Hello and before you read on, I want to caution you that I'll be using medical and lay terms in my narrative. Everything in a tactful way, but easy to understand too. I'm a 38 year old Italian male. I'll be 39 soon, in Dec. About 2 months ago, in August, during a hot and muggy time, I noticed a small pea-sized bump under my skin at the top of my natal cleft (butt crack). I thought it was an ingrown hair or pimple/blemish. I have a fuzzy lower back and yes, fuzzy buttocks. I noticed the small bump while showering one morning. About a week after I noticed it, I started have a very sore, uncomfortable sensation when I'd sit down, even lie in bed sometimes (on my back). I felt the bump again and it had grown, still under the skin, to the size of a large jaw breaker or jumbo marble. I freaked out. It was not only larger, but painful now. I called my primary care physician and had him look at it.

 Unfortunately, I had to use another doctor at the last min. as he was busy. The doc told me it was too big for him to "take care of" and referred me immediately to a surgeon in day surgery. It was a bit embarrassing because for the surgery, I had to kneel on the side of examining table and spread my legs. Bent over, they prepped the upper butt area and then did "surgery." The doctor said he lanced the cyst and drained it. I could tell it was draining as I saw the gauze they were using and putting on a small tray. There was blood and yellowish/white puss coming out. It smelled NASTY. After they drained it some, the surgeon put a "wick" in the cyst to encourage it to drain even more. The "wick" was about 4 inches long and a thin piece of cloth, not more than 3 or 4mm wide. They dressed the site and sent me home. I had to sit in a very warm/hot bath every morning and night for 2 weeks. Oh, after 24 hrs, I had to remove the wick. It was HORRIBLE for me. It hurt like hell. You're supposed to pull it out slowly while sitting in the bath water. I did it standing up in the shower. MY FAULT! Again, it hurt. I almost threw up. Call me a wuss. The cyst continued to drain for 3-4 weeks total. Each time it drained,the fluid smelled AWEFUL. Do NOT just wear underwear without putting a gauze dressing to cover and absorb the drainage!!! It's now been 2 months later and I noticed I have a small "hole" in my skin where the cyst was. It's almost like a dimple/hole that is big enough to put a BB in, as in BB gun. It's now getting sore again and I'm going to have to make another appt. with my doctor. Someone please tell me if you've had a similar experience and what you did. I have a problem as I do have a fuzzy behind (butt) and apparently hairs are a problem. You may e-mail me at Milan15@aol.com. Put in the subject Pilonidial cyst. Thx. Hope you don't have to go thru this like me again. M.

Date: October 13, 2006

Story

I was only 16 when i first realized i had the cyst. I had my first surgery in 2004 right about a month after i discovered it and had it lanced. Then it grew back again so i had surgery in november 2005. That one wasn't too bad, he cut it really small. The hole never healed up so then in Febuary 2006. This surgery was really bad, the hole ended up being huge and i had to stay in the hospital. I missed months of school. It is now october, and im in my freshman year of college and it has yet to close up. Now i am having surgery again for the fourth time on the same thing. Since the first surgery, it has closed up once or twice for maybe a week or two at a time. That is it. Now i am seeing a new doctor a few hours away from my home town. I am planning on my fourth surgery right before christmas. This time we are trying the wound vac and stapling the edges or the wound down. I just wanted everyone to know that commiting to the surgery is a big deal and just to let you know what your getting into. Some people are fine with just one surgery but its taken me 4 times and hopefully this is the last one.

Date: October 11, 2006

Story

I was in grade 11 when I noticed that there was something wrong in my anal area. I was experiencing a weird smell, while sitting all day at school, and I didn't think it was just body odour. Shortly afterwards, I had proof that it wasn't just body odour, as I found a ton of blood on my toilet paper when I wiped, following a bowel movement. I immediately made an appointment with my doctor, and I went to see him the next day. He told me that he wasn't sure if it was a cyst or hemorrhoids, so he sent me to a specialist. The specialist told me that it was pilonidal, and that he wanted to do a bunch of tests. I did the first and I can't really remember what it was exactly, but the second one had to do with them shoving a camera up my bum, while I was awake. They tried to do it, but I told them I didn't think I could do it, and left. That specialist was an arse, so I decided I'd go see another specialist. This was about six months later, and he told me that it was a pilonidal, and that he didn't have to do any tests. It was supposedly quite bad, and he figured that he would have to do surgery as soon as possible. That scared the Hell out of me, so I chickened out, and decided I'd try to let it heal. Of course, it never did.

A year later, I decided that I would go see him again and get it done during the summer, as I was starting college in September. I scheduled my surgery for August 9th, in hopes that I would be healed enough to attend a concert on the 25th. It was to be an open surgery, under anesthetic. I dreaded the surgery, and it scared me worse than anything has ever scared me. I'm a bit of a wuss, and I figured that the pain would be excruciating, based on some of the stories that I had read here. Of course, everybody is different, but it seemed like the majority of the people had experienced quite a bit of pain before and after their surgeries. I had never really experienced much pain before I had my surgery (it only flared up once in two years, and I was only unable to touch it. It didn't hurt to walk or anything.) After all of the worrying, it ended up that the surgery went very well, without any complications. It wasn't as bad as the surgeon thought it was, but he had to make two cuts, and remove two different parts. They weren't attached. The post-op process was a bit of an annoyance, but it at least allowed me to heal without any complications. I live in Canada, so I got nurses to come to my house every day (for free,) and they'd change my packing. I'd shower before they came, and I'd take one or two Percocets for the pain. I actually quit taking those after the first week, and I still have most of my prescription.

Mid-way through August, I was told that I should be having the packing changed twice a day, so we started having the nurses come in twice a day, until my Mom was able to do it herself. Once she was able to do it, she did the second dressing and the nurses came in once (in the morning.) It worked out quite well. If my Mom was unable to do it, I'd tell them in advance, and they'd come in twice that particular day. I healed relatively quickly (it's taken exactly two months to fully heal,) and my surgeon (who I saw for a second time post-op today,) told me that it's fine and he's pleasantly surprised with how well I healed. He still wants me to put some gauze in it for a week or two, and I'm to rub the area with a soft toothbrush once or twice a week, in the shower. This is to prevent it from ever occurring again. Overall, my pain was very minimal. I didn't really experience any pain after my surgery. Once or twice, I hurt for a split second, because I was carrying too much weight (a backpack containing a laptop, for college,) and it was bothering it. Besides that, everything has been pain free, which really surprised me. I thought I'd be in agony, as I said before. And, to be honest...I didn't feel any different post-op.

Date: October 11, 2006

Story

The PC showed up when I was 17, almost 10 years ago. I thought it was a bug bite but it grew, doc lanced to and gave me meds. It was fine for about a year. Had one more flare up, same treatment. No moer problems for almost 2 years. I started noticing that the general area would kinda hurt once in a while, without flaring up. I had maybe two more incidents when the numbness started. It has now been almost 10 years since first incident. I have a regular pain in my lower back, kinda a buring sensation. I also have what feels like indentations under my skin in the lower back. Kinda feels like a lakebed covered in skin. If I rub the area its is kinda tender and will slightly burn. Last time I went to the doctor he said that my case is not bad at all and did not want to do the surgery. They did not even want to lance the last major flare up. I have noticed that my left leg, on the outside, will tingle and go numb if I stand to long or sit in one position too long, even sleeping on my back will sometimes cause it. At this point I do not have insurance. Once I do I will have a doctor run some more tests. Right now the pain in not enough to complain about and the flare ups are rare, the worst part is the slight burning pain often and the numbing.

Date: October 10, 2006

Story

I first noticed my first pilonidal cyst about 2 months ago. I first thought it was some kind of insect bite because it was a tiny, painful bump. After about a week, the pain seemed to be going away. Than one day I woke up and the whole area around the bump was red, hard and warm to the touch. It felt like a knot under my skin. After about 4 days of pain, I couldn't take it anymore. My fiancee drove me to the ER around midnight. We were both curious as to what this thing on my behind was. Well, laying on my stomach with my behind exposed to the doctor barely phased me. All I was worried about was the diagnosis. The doctor took one glance at it and said it was a Pilonidal Cyst. I had no idea what that was, so I asked him to explain. He was quite vague on the details, so I later researched it. Anyway, the doctor said he was going to drain it, and pack it so it could heal. I was given antibiotics and pain killers through IV, but the painkillers did not work too well. As soon as he made the incision I screamed. I'd never been in so much pain EVER. My fiance said he only drained it for about 5 minutes, but I could have sworn I was there for an eternity.

So, the doc packs it, gives me an RX for antibacterials and painkillers, and refers me to a doctor for a check up 3 days later. The pain almost instantly went away after the draining. (Thank God) Since I had no health insurance, I had no choice but to return to the ER to get the packing removed. I saw another doctor and he said it was healing well. He told me to keep the area clean so I wouldn't get anymore of these painful things. After about a month, I got another pilonidal cyst on the other side of my behind. I still didn't have health insurance, so I had to treat it on my own. I kept it dressed and cleaned and I showered everyday, sometimes twice a day. I also scrubbed my behind with Dial antibacterial soap. Now, I'm suffering with my FOURTH pilonidal cyst and I don't know what I'm doing wrong with treatment. I try and try to keep it clean, and do everything the doc told me, but the keep coming back. Since I can't afford health insurance, I'm unable to have surgery. I hate the pain. I just wish these would go away forever. But, it is nice to know there are others out there who understand what I'm going through.

Date: October 09, 2006

Story

Hello, my name is michael and im 19. About a week ago i had trauma to my tailbone and a couple days later i started to feel pain. I figured that i must have bruised my tailbone but later on in the week i visited the ER and was told it was a pilonidal cyst. SO, while in the ER with NO LOCAL ANESTHETIC i had it lanced and drained. Its a week later, and im still have it packed and daily dressing changed. The doctor said to come back in a week and that the possiblity of surgery is high. Im hoping for the best because surgery is something that really dont want to do.

Date: October 04, 2006

Story

I've had a csyt for 5 years since I was 16. One day it just showed up after I was playfully dragged across a ground by a friend. It's has never gone away -- the cyst was drained at childrens hospital within 3 days of noticing the problem. After my surgery, my healing went really well, I followed all the guidelines. But that wasn't enough after my two healing, I saw the doctor who gave me a clean bill of health. After that month I got a cyst every month for nearly two years. They started to get infrequent after a while but they didn't stop. I have been embarrassed about this problem since it first started. I will modify my schedule around when I think my cyst will open. I always pray to God that it doesn't open in one of classes or at work. I currently have one, and without health insurance I'm left going to my Health Center on my campus which in terms refers me to the county hospital unless the cyst is already opened. Just two weeks ago I had one -- really bad, I was in Vegas with my sister and I was really sick with a fever. Two days before I visited my student health center and the doctor who was very inconsiderate of the sensitivity of the area decided she wanted to puncture the cyst to see it would drain -- but only blood came out. She scared me with I could get sick and have a infection shut down my immune system. Though my cyst eventually drained itself in Vegas two days later less than a week later I getting another one. I've never have this happen before. I do believe this is because of her let me drain it without sugerical methods. I wouldn't wish this on my worst enemy.

Date: October 03, 2006

Story

Hello again. I posted here at the end of June this year, saying that I had gotten my pilonidal removed. My doctor told me it was the worst case he had ever seen (after dealing with it several hundred times over 30 some years). That was quite the honor. Also quit a pain in the butt to deal with (pun intended). However, that surgery worked for all of about 2 months. So, to recap, I lost my job working at the golf club (as I couldn't work there for probably a month and a half, due to the context of my job there), and then at the end of the summer, when students were going off to college (I stayed back for an extra year of high school), I went out to find a new job, and BAM. Pilonidal shows up again. I really, really, felt like jumping off of something very tall at that point. Yesterday was my second surgery, once again a closed excision, but the doctor told me that this time, it went "extremely well", and assuming I do a good job to keep my butt as bald as a bowling ball, it shouldn't come back. So, here's hoping. And by the way, let this be a warning to you: When the doctor, AND the good people here at pilonidal.org tell you to shave your butt EVERY DAY, then for the love of <insert your personal deity here>, DO IT!!!

Date: September 14, 2006

Story

Hi, folks... My name's Marty, I'm a 38 yo man, and I've been cyst-free since July 1985. I can only speak for myself, but looking back, when I was 17, the idea of going under the knife didn't sound too bad, if it meant being rid of that cyst! My message to other young men out there who have a PC: you can be tough by facing this PC thing, and finding a doctor who can help you nail it for good. But my heart really goes out to the women who've had to suffer from this humiliating condition, never mind that I myself am single and have never had the time to look for a gf or a wife. By all means, get that cyst removed by an experienced surgeon as soon as you have the opportunity. Anyhow, just thought I'd share my thoughts with the rest of you... 21 years and still no recurrence of the dreaded cyst, Marty (ke6wnh at comcast dot net)

Date: September 14, 2006

Story

I HAVE A CURE!!! I suffered terribly from a pilonidal cyst for two years and had received the letter from my doctor for surgery. I made one last attempt to avoid the knife (especially after all the horror stories I heard). I visited a chinese herbalist and she lieraly saved my ass. I am 100% cured and have been for 4 years now. I have given the cure to a number of people and it has worked every time. The cure involves castor oil and a herbal poltis and hot baths. The treatment is totally painless, reduces pain from the start and it works in about three days if you follow the regime. If anyone wants to contact me I will tell them what to do. I am not selling anything and the advice is free. If anybody can not source the necessary ingredience in their local healtstore I can tell them where to get it. The only reason I had not posted instructions on the web before now is, I wanted to see if it would work for people I knew locally and I also wanted to wait to see if it was a permanant fix before I spread false hope. What I will do is, if a few people contact me as a result of this message, I will tell them exactly what to do. If it works for those people then maybe we will ask pilonidal.org to document it and post it on the site as a cure (or a probable cure, as I am not sure if it will work for absolutely everybody. My name is Declan Dooley. I am 40(ish) yrs old, I live in Ireland and my email address is declandooley@yahoo.ie I hope this cure will help, please feel free to contact me.

Date: September 13, 2006

Story

Hello, This is an excellent website. I had surgery in 1988 to remove several pilonidal cysts. I live in Ontario, Canada so medical treatment is free (well via my tax dollars). Anyhow, I was at the time and still am a Type-1 diabetic. Luckly my surgery went well because I had a good doctor, access to follow up appointments and free antibiotics. The healing time was about a year. But to this date (~18 years) I have had no reoccurrence. So, as most people and professionals say on the website...just take care of it early.

Date: September 12, 2006

Story

Hi All. A word about cysts and Type 2 diabetes. About two years ago (Jan , 2005), I posted my experience with my pilonidal cyst. Back then, I had my second flare-up with it in Nov 2004, which turned into a very scary experience. At that time, I had Type 2 diabetes and didn't know it. This made the cyst much, much worse than it would have been otherwise. It required 2 surgeries to get fixed! One was bad enough, but two? I have two things to say to everyone over the age of 30 who is suffering from a pilonidal cyst: 1). Get the surgery and have the cyst removed ASAP. You won't regret it. Surgery isn't scary and the pain is pretty much a non-issue. And, 2). Get yourself checked for Type 2 diabetes. You can have Type 2 and not even know it at all! I didn't know. Basically the cyst is nothing more than a staph infection. And staph infections LOVE high blood sugar levels. According to several doctors I've spoken with, a relatively high proportion of people with cyst infections have the cyst because of Type 2 symptoms. There's a virtual epidemic of Type 2 out there. So, don't even wait for surgery to get checked. If you don't plan on surgery (why?), go to your family doctor and have a blood test done anyway. Take care all, and happy sitting. I don't take it for granted anymore. Does any of us anymore?? Hugh in Atlanta (sdia@bellsouth.net) e-mail me anytime for questions.

Date: September 08, 2006

Story

I had a severe case of Pilonidal cysts and I lived with the pain for years going to many doctors and havin them work on it. The cysts just kept comming back. After 10 different doctors and 3 years of this i decided to have surgery and i cant beleive i waited so long it was not bad at all i had a 9 inch long incision and i was walking around in a couple of days. totally worth the surgery just get it all taken care of at once while you are knocked out

Date: September 04, 2006

Story

I am a 15 year old male and I first got my cyst when I was 14. It was a pain and right after I had broke both my left and right arms and they had healed. My tailbone had been randomly hurting for weeks but I had found nothing there, I really hadn't bothered to check. I didn't notice it at all until I got hit during a basketball game right in the cyst area and it burst, leaving me with shattering pain. I went home to find that there was pus and blood everywhere in my shorts and we went to see a doctor a few days later. An expert on it told me it may/may not be a cyst and I should wait and see. It was lanced in his office then. 3 months later it flared up again and it developed the cystic sinuses, and was diagnosed as a cyst for sure. I set up the surgery in a few months (for I had basketball) and then had it taken out. It only took me 5 days to be completely walking again and I was playing basketball again within 2 weeks. I have had no recurrances and everything is fine back there. Had to keep an eye on it and clean it more, but nothing to this date. I STRONGLY encourage those of you debating surgery to have it and get back to your normal life.

Date: September 03, 2006

Story

Well, it has been about 8 months since I have had a hint of a flare up of my cyst area. The first flare up happened when I was 42, under a lot of stress and miserable. My doctor was able to pop it and drain the cyst, put me on antibiotics and sent me to a surgeon. The surgeon wanted to wait until the infection went away before he saw me again. Then, his nurse said that if I could, I should let this heal on its own. And it did. Six months later and under stress again - close to the same spot, but not exact - another flare up. This time, I found this web site and started desperately looking for a NON-surgical solution. With this flare up, I could tell that the skin on the lower part of my back and top of my buttocks moves with just about every move I make. I really hoped to keep the skin intact. Some site that I do not recall had a message about using a clay paste and some photos that were a bit graphic. The suggestion was to use green bentonite clay made into a paste over the infected area with a clean bandage on top of it. I found the clay in powder form at a health food store and used the paste to cover the area when the wound was still open a bit. What relief. It is cool and seems to draw out the infection. Anyway, that was my experience -- please be careful and experiment in a way that works for you.

My last serious flare up was about 6 months later again. This time, I started using the green bentonite clay paste when the spot started swelling and was beginning to cause me pain. I make a small amount of paste and cover the area thick and cover with a bandage and the best non hair-pulling medical tape I can find. I keep the paste on for about an hour or so - until the clay starts drying up. Wait a few hours or less (it's up to you) and then reapply as needed. I also keep this area clean and dry - using a blow dryer quickly over the area after toweling off after a shower. The last beginning of a flare up, I used the paste almost immediately and the swelling went away. This green bentonite clay paste has really helped me and I wanted to share that with you. Sincerely, Sue in Colorado

Date: September 02, 2006

Story

This is a story to give you HOPE. I am a 29 year old female. For two years, I had my cyst lanced and drained every few months because I was scared of surgery. I finally went and found a surgeon who knew all about the disease. I was put under and had an incision that went from the top of my crack to almost my anus. The surgeon basically ice-cream scooped out everything that was there. I had stitches for a month and then it took about 6 months for the incision to entirely close. As I was healing, I decided to openly talk about the cyst. It turns out, they are a lot more common than people think. Total strangers would say, "Oh yeah, you have the butt cyst! I know so-and-so who had one..." Do not be afraid. You will heal eventually. Find a surgeon you trust. It doesn't have to be an open wound that you need to pack--they can sew it up. It has been two years since my surgery. I have no feeling in that area, but it's no loss. You can't even see it because it is hidden by the rest of my behind. Don't be afraid to tell your friends and family that you need help. And women especially, do not feel ashamed. You are beautiful and amazing even though you suffer from this disease. My best advice would be to go ahead and schedule the surgery. Lancing and draining for so long was my biggest mistake. Be strong and know you are not alone!

Date: September 01, 2006

Story

About two weeks ago I began to feel a slight ache on my tailbone, which I though was just a bruise or injury on my tailbone. Didn't think much of it, so I just waited to see what happened. A couple days later the pain had increased a bit, which was beginning to scare me. I asked people at work if they had ever heard of such a thing, and one man asked if it hurt right around my tailbone area. I replied yes and he said it sounded like a 'pilonidal' to him, as he had, had one once before. He said I should see a doctor ASAP. I waited it out a couple more days, and when it did not go away, I called the doctor to set up an appointment. A couple days later I went in and he took a look at it. He said it was infected and wasn't draining so he'd have to 'lance it'. He numbed it up and in 4 seconds cut a hole in it and drained it. He prescribed me with some Keflex for the infection. Let me tell you I instantly felt totally relieved. My doctor then scheduled the surgery to the 31st (yesterday) to have this thing removed. It also tends to run on both sides of my family, which made it almost imminent. Well, surgery was yesterday, it aches a little bit but not much. I'm so glad to have this thing out! They also give you some nice strong pain killers (Oxycodene in my case!). But good old Aspirin or Tylenol ought to do the trick also, it REALLY doesn't hurt as bad as they say.

Date: September 01, 2006

Story

Hi, I'm 23 yr old female, and I noticed mine for the first time when I was 18. It just started to flair up and got really big and painful. I had it for abt 5 days and then it poped and went away. I thought that was the end of it. Boy was I wrong. It came back around Christmas the next year and I went and had it drained. They told me what it was and told me I needed surgery but in the wonderful USA if you don't have insurance your screwed. So I dealt with it. It would come abt every 6 mths and then it went to every mth or so and then I got pregnant and It flaired up while I was 5 mths pregnant with a case of the flu. I had my baby in july of 06'. I have insurance now so I went to the surgeon and had my surgery almost 3 weeks ago. Its an open wound and its healing which is good. The 4 day through the 8th day was horrible. My baby was 3 weeks old and I could hardly pick her up. I could hardly walk, and sitting was horrible. They have Lortabs and I went through 30 of them in3 days. After the 8th day the pain gradually got better and now I can pull the packing out without it hurting. I hope that all heals well and I don't have to worry abt it again. I'm glad there is this website. thanks