Personal Stores Archive #19

Date:

March 31, 2004

Story

I have posted my experiences twice before. It has been 2 months since my surgery. Mine was the closed method. After the stitches came out a month ago, I thought it was all over. However, I still have 2 open areas that won't close. I went to the doctor Friday and he said he was going to use silver-nitrate to close the area.

I wanted to post this piece of advice--if you have an open area, and you hear the doctor use the words silver-nitrate, find someone or something to hold on to.

Otherwise, I feel confortable that this will all be gone soon and I can get back to normal living. All the best.

Date:

March 30, 2004

Story

Well...I'm 20 years old, male, live in Northern VA but I go to college at Virginia Beach. I'm not sure when I wound up with the cyst but I first noticted it in Feb 2003. This particular cyst of mine is possessed by the Demon Murphy - it has acted up twice, at the worst possible times.

I first felt it, although I had no idea what it was, n about 2/7/03. It was just a minor irritation at first, and I tried, vainly as you all know, to ignore it. I'm a healthy guy, and I don't even have a family doctor.

Cut to Tuesday the next week - I've promised my girl, who's been having a rough time, I'll come up from college to see her. For Valentine's Day. By Greyhound Bus. A 7 hour trip, and MY BUTT HURTS. A LOT.

Monday night I could not sleep. I had four stages of Pilonidal disease, They are:

1. Hurts to sit.

2. Hurts to walk.

3. Hurts all the time.

4. ARRRRGH. By that point I'd have seen Doctor Kevorkian to kill the pain. So I looked up tailbone pain online and found a site, not this one, on what I had. Realizing that the inch long, terribly tender, bump in the top of my crack wasn't going away, I went Tuesday night to the ER. There, the nurses were great, giving me injected lidocaine, which hurt so bad I almost died, lancing, and then packing with gauze.

It was the WORST pain I have ever felt. I have a 8-inch sword tattoo on my leg and that was a sunburn to this. After, I was sore for a couple days, but a Vicodin got me through the busride.

I didn't forget the doctor who drained it's parting words - "It may be next week - or next year - but it'll be back, and you're going to have to have it removed."

It's been a year and a month...almost to the damned day. Last Thursday I got the first pinch, and I have my girl coming down on this weekend to spend her Spring Break. I immedietly found this site and then went right back to the Hospital, after making an appointment with a Colon & Rectal Surgeon...which isn't till Thursday. I had no intention of getting as bad as I was last year. I was crying toward the end of that experience, which I never do...

The nurse said it didn't have any pus yet, which she checked by numbing with Lidocaine (not fun but MUCH less painful than last time - I'd rather have an amputation by pocketknife than that again) and withdrawing a 'sample.'

I got Cipro, Naprox(en) (Super-strength anti-inflammatory - perscription Tylenol) and Vicodin, which I haven't taken any of yet. Started taking the Cipro Sunday morning...and it kept getting worse. This morning I had progressed to hurts to walk, step 2, and I was well on the way to step three by tonight.

I had decided to go back to the ER tonight...I can't wait till Thursday, or so I thought. It wasn't nearly as swollen as last time, but maybe the scar is weak tissue...it burst as I lay in bed reading a book. I didn't notice until i got up and felt the wetness...quarter sized spot of pus in undershorts, that was it. I went and took a hot shower (no baths at school) and squeezed a out some more...which barely hurt.

It's still a bit sore but I feel much better...hopefully this flare-up is over and I can see what the surgical options are. I'm all through with this thing. I want it out of me ASAP.

Date:

March 30, 2004

Story

Contrary to many of the stories shared on this site, my pilonidal cyst experience has been far from horrible.

I first noticed a slightly painful lump at the peak of my gluteal cleft on a Saturday morning while getting into my vehicle. By that evening sitting was a challenge. That evening, and a couple times the next day, I sat in a warm bath to try and ease the pain and attemt to bring the sore to a head.

The following Monday I was able to get the cyst to drain and went to see my physician. The verdict was as I had assumed: a pilonidal cyst with 7 pin-sized sinuses.

After a 7-day regimen of antibiotics I had the cyst excised under heavy sedation (Versed & another wonderful drug administered via IV). Since this was the first instance of a flare up and the antibiotics kicked the infection, the surgeon sutured the wound shut.

Recovery wasn't a problem. The hydrocodone prescribed wasn't needed, only an occasional Motrin or Tylenol. Matter of fact, within 5 hours of my surgery I was walking around as though nothing had really happened. I did however have to sit with my weight slightly shifted to one side to avoid minor discomfort.

That was 4 months ago. The wound has long since healed and I haven't had any discomfort since.

Hopefully this will be the same type of experience many of you will have!!!

Date:

March 29, 2004

Story

Let me tell you my story of that unforgetable day. I notice having a sort of a lump on my tail bone at the age of 18. Years went by with no discomfort. Finally at the age of 28 there appeared a sinus with minimal drainage and foul odors started to occur.I went to a walk in clinic and the doctor imediately knew it was a pilonidal cyst and recommended sitting in salty water to keep it from getting infected; which really worked well; almost closed it right up . So he refered me to a surgeant to have a look.

I was able to quickly ask 3 of 5 friends that had the Cyst too. They all said no big deal. You'll feel a little drunked up and sitting would be uncomfortable; This meaning the post operation experience that they had; not the actual surgery procedure. I was young and busy at the time never had surgery before so I really didn't have a clue of surgery or Anesthesia and the need for it, and really found it to be no big deal, accordingly to my friends " with the Post operation experience that they had". So I really didn't think nothing of it.

So I went to see the surgeant, he lied me down on a table and said Yes its a Pilonidal Cyst. He said the best method is Excision with Marsupialization. And went on to say that the procedure involves injection of Local anesthesia around the perimeter of the cyst to numb the area and then a special stiching method. "Poking on his palm with his finger to show the injection permiter area". I really had no big deal with asking any questions. Being busy, I just wanted to leave to return to work. I didn't question anesthesia cause I had no clue to Surgery, or pain that is encountered during surgery cause I never had surgery before. I though it was all rosey. But before leaving his office I quickly asked him that some friends of mine that under went this procedure were kind of feeling Drunked up. "Not knowing what my friends meant of this". He said Oh thats not required. So I started thinking Oh maybe the Hospital gives something for pain," Again not knowing what the drunked up feeling was for"

So the day came for surgery and went into the hospital. A nurse came to see me and asked if I had alergies to Local Anesthetic; I replied what is local anesthetic? She replied Numb, Numb, like freezing when going to the Dentist. I said no I've had cavities before and no problem with it. So she check off the list.

Into the room we go, got undressed into the robes. Talked with the Nurse cause i started getting nervous, Cause I remembered my friends saying I was going to feel drunked up. "Again not knowing what they meant of it, I never had surgery before." I asked her what is the feeling of the procedure like, and she replied well the first few shots and going to be gory and then it will reside as it freezes. I started crapping in my pants and said how GORY!? She Looked away and didn't reply cause I was starting to show fear and got the Impression that she said to much.

Now I was really afraid and still didn't know what my friends meant by feeling drunked up;I started thinking maybe they meant now during the procedure. I wasn't able to ask the nurse cause she didn't return till both she and sergeant entered. The surgeant asked how was i doing and I said not to well,"with my butt in the sky." The nurse quickly used a shaving device around the Pilonidal area. They put a drap with a hole in it over my behind. The Surgeant dragged a device on wheels close to the table and the nurse strapped a device on my leg. I asked what is that for? And she repied it monitors the amount of Oxygen in my body. I started getting worried cause I had the remark of my friends saying you'll be feeling drunked up." Again not knowing what they meant." So the surgeant said are you ready? and I quickly replied: Hey my friends that had this done to them said they were feeling drunked up at this moment"Again not sure if they meant now or after". The surgeant replied Ah! not needed! Now I really paniced cause i started feeling that the drunked up feeling was for this moment, the surgery itself.

I started asking stupid suggestions with no clue to what i was saying like can I have Nitroxide the gas thing for women during deliveries of babies. I remembered that when my wife gave birth. And I looked at him and I got the impression from the look on his face and the nurse that I was onto him and the need for the Anesthesia. He said No! Waving his arms Like in baseball when a player is safe at base; So I said in a trembling voice go ahead! YOUR THE EXPERT! He said here it comes, My body started shaking with fear, also causing my butt to tense up and shake without control. He snapped, and said you have to stay still!!I really tensed up, and pushed up with my hands into a pushup position. The Nurse came to my side and said relax,relax, in a soft gently tone, trying to bring my head down to the pillow. I quickly tensed up again into the pushup position and grabbed her wrist, I let go quickly trembling and forming a fist, still trembling i opened my hand and said I'm Okay in a Scared tone of voice. She said AHHH!!. I got the impression that she disagreed with the whole procedure at this moment, and seemed upset at the surgeant. The nurse left the room in an angry manner.

So it began......... The first injection...IT WAS THE MOST HORRIBLE PAIN I'VE EVER ENCOUNTERED IN MY LIFE. i STARTED BREATHING QUICKLY, MY EYES HITTING THE BACK OF MY HEAD. I STARTED SWINGING LEFT AND RIGHT WITH MY UPPER BODY, SHAKING ALL OVER, MY BUTT TENSING AND TREMBLING WITH THE NEEDLE WITHIN. THE SURGEANT SAID YOU HAVE TO STOP SHAKING!! I REPLIED JUST DO WHAT THE PRO HAS TO DO!! AT THIS MOMENT I STARTED THINKING THAT I SHOULD YELL STOP!!! STOP!!! BUT I COULDN'T SAY IT CAUSE I THOUGHT THIS WAS WHAT THE PROCEDURE WAS, AND THAT IF I WOULD SAY STOP, I WOULD'NT BE CAUGHT DEAD ON THIS TABLE AGAIN!!!!!SO MORE TORCHERING!!!! HEAVY BREATHING!! SHAKING MORE!! iN THE PUSHUP POSITION SWINGING LEFT AND RIGHT!! MY EYES HITTING THE BACK OF MY HEAD!! THE NURSE WALKED IN, I LOOKED UP AT HER AND SHE AND THE ROOM WAS SPINNING ROUND AND ROUND!!!!!SHE PUT HER HEAD DOWN IN HOROR!!AND WALKED OUT THE ROOM!! I RECALLED THAT SHE NEVER CAME BACK TO ASSIST THE SURGEANT!!TILL THE END!! SO MORE TORCHERING!! THE MOMENT OF THE GORY FEELING TO RESIDE AFTER A FEW INJECTIONS NEVER CAME!! THE OXYGEN MONITORING EQUIPMENT RANG AND RANG!! THE SURGEANT YELLING, YOU BETTER BREATHE IN DEEPLY!!! I WAS UNABLE, MY MOUTH AND THROAT WAS DRY AND WAS UNABLE TO REPLY!! HE NEVER BOTHERED ASKING IF I WAS ABLE TO BREATHE WITH EASE, AND NEVER ASKED AGAIN THROUGHOUT THE SURGERY; AND YES, THE OXYGEN MONITOR NEVER STOPPED RINGING TILL ABOUT, I THINK 30 OR 40 MINUTES INTO THE SURGERY. I EVENTUALLY WAS ABLE TO BREATHE AND IT SEEMED LIKE THE MOMENT OF THE GORY FEELING RESIDING HAS ARRIVED.

He said we're almost there with the local. I felt him tapping on my Pilonidal cyst area and said I need to go a little deeper. With what ever strenght I had left, I again got into the pushup position expecting the worst, especially being drained of energy. It wasn't that bad then, just a little sharp pain. I was finaly able to lay my head down on the pillow for the few deep injection remaining.

I believe aprox. 5 to 10 minutes later he tapped on the pilonidal cyst area again and I heard him say Its Packed and I'll start the Excision.

Every thing seemed okay now, I could feel him pushing or cutting in the area without pain. The nurse walked in finally and never looked me in the eyes. So the excision continued.....

I finally was calm and was breathing normally again knowing that the end of the surgery has come...... GUESS AGAIN......

ALL OF A SUDDEN, OUT OF THE BLUES, A HORRIBLE SHARP PAIN OCCURED!! I SWEAR MY EYES HIT THE BACK OF MY HEAD, I HEARD THE SURGEANT SAY OOOPPPSSS!!! AND I KNOW HE DID SOMETHING WRONG!!! THE OXYGEN MONITOR RANG AGAIN!!!HE REPLIED; I NEED TO ADD A LITTLE MORE OF THE ANESTHETIC!! AT THIS MOMENT I WAS SO WORN OUT THAT I DIDN'T FEEL THE INJECTIONS.

The surgent said it is complete and came to my left hand side with a cart on wheels. He showed me the Pilonidal Cyst that he removed and cut it in half to show me the tunnels within it. Like the whole expisode of horror didn't happen. The Pilonidal Cyst was aprox the size of my thumb, pretty big. He simply said to the nurse to pack the wound, and left. After packing and bearly able to stand the nurse handed me a presription of Tylenol 3 and never looked me in the eyes.

I said thank you and I went home.

The next day I was in tears and could'nt believe the pain I was put through. I went to see the Doctor who refered me to this surgeant. I walked in to see him and while trying to explain what happened I began to cry uncontrollably and explained the horror. He was stunded and said I'll call the surgeant to tell him that you were unhappy with the procedure.

I called my friends who had the procedure done to explain what happened during their surgery. Again they said, felt drunk and was uncomfortable to sit for a long while. I said NO!! what happened during the EXCISION!! They all replied I don't know we were out of it!!

3 of them had GENERAL ANESTHESIA!! 2 OF THEM HAD HEAVY SEDATION!!! POSIBBLY MAC!!!

Please! this was very difficult for me to write and I would really appreciate it if you would let everyone you know, NOT!! to have it done this way.....

TONY

Date:

March 29, 2004

Story

Hello,

I believe I have a polinidal cyst. I noticed a bump over a year ago while showering, but it was completely painless and caused no more effect than a slight itch every now and again. However, in the past 5 days it has gotten worse and worse. I can't sit or stand without complete discomfort. It is red and puffy in the crevace, however I don't notice major swelling there. The swelling seems to be on either side, within the flesh surrounding my tailbone. My swelling is barely noticeable when you look in a mirror, but if you feel the skin in the surrounding area its incredibly hard and sensitive. My sister was diagnosed with a polinidal cyst less than 2 years ago. I called the doctor she went to, and they wouldn't give me an appointment for nearly a month. Obviously they have no idea what the pain is like. I don't want to go four more hours with this pain, let alone a month. I can't imagine having a golf-ball sized cyst coming out of my tailbone region as many of you described. Mine is painful enough as it is. On the other hand, it doesn't seem to be filling in the same fashion. I don't know what to do first, it hasn't been diagnosed yet, but going to another doctor who'll refer me to a proctologist seems like a waste of $ for a person with no insurance. I just want the pain to go away, Gregg

Date:

March 29, 2004

Story

Hi,

A quick story of my experiences. I have had 4 surgeries. The first three were closed with sutures In May 2002, August 2003, and December 2003. The cyst came back everytime. I just had the open surgery on Friday the 26th and am receiving help from my Dad and fiance to do the packing. I have faith the open technique will finally get rid of my cyst. We are keeping it clean and changing the bandage twice a day. Good luck to all. (If you are having troubles with the closed technique, many people suggest going for the open surgery.)

Thanks, Jake

Date:

March 28, 2004

Story

Hi There:

I have recently undergone surgury to have my cist removed. My symptoms started about a month ago with the aching pain and the leaky bottom. So I thought I'd get this thing looked after asap. My surgeon recommended having the wound sutured closed as this was the first time for me and recovery would be quicker. I have been at home resting for the past 10 days and I had a drain attached to drain the fluid. The drain was removed approximately 4 days after the surgury and stiches appear to be healing OK, with no signs of infecction but I noticed today that there was quite a bit of drainage coming from the botom of one of the sutures. Not sure if I'll have to back in to get this reopened or if it just neeeds to drain but I'll be contacting my Dr. first thing in the morning.

Moderately distraught...

Has anyone been in the same boat I'm in cause I'm kinda freeking out here??

Please feel free to email me at 2putt@telus.net

Thanks..

C

Date:

March 28, 2004

Story

Hi... I'm 22 and found out about my cyst back in 2001 when I was 3 months pregnant. I was under base medical insurance, so I really didn't have an option of where to go since there was a hospital on base. The pain started out mild, but within 24 hours I was having to roll out of bed. I had gone to the base ER 5 times in 4 days, and not one time did they look at my tailbone. I was given Vicodin.. that didn't work b/c the pressure was causing too much pain, and had 3 shots of demerol... that didn't even take away the pain.. it just made me loopy, and to top it off they released me to DRIVE home...but that wasn't the worst.. the worst was when the Military Police Officer guarding the door, pushed the automatic door opener and one set of doors hit me square in my crack!!! About 4 hours after my last visit to the base ER, I was laying in bed, and had to go to the bathroom, but my body wouldn't allow my legs to lift me up b/c of the pain. I was taken by ambulence to another hospital, being that it was right after 9/11 the base wasn't allowing ambulence drops(Thank God!!!). I was given the option to drive myself to the base.... but decided against that for obvious reasons. I was wheeled into the ER and the doctor came in within 5 min, he pulled my pants down... I was on my knees with my butt in the air, buy this time... and didn't hesitate. He didn't numb the area... and the pain was unimaginable...I had my son natural, and I don't even think that could compare, but he also told me that it was so bad that any numbing they could do wouldn't relieve the pain I'd feel. After he drained the cyst, he packed it ... which hurt almost as bad as the actual draining. Then gave me some antibiotics, a shot of demerol, kept me around for an hour or so and then sent me on my way... I appreciate that doctor for doing what he did... seems to me the military docs were scared to look at someone's butt... I hadn't had an episode since .. till 2 days ago... my cyst is now the size of a golfball.. and I'll be heading to an urgent care after work.. as of right now I'm sitting at my desk on a donut( the greatest invention since the slinky!!) Being that it's Sunday, I was trying to hold out till Monday to get it taken care of, but with these things you never know how fast they're going to fill, and unfortunately, I have tough skins, so it hasn't ruptured through the scar. I've found that ambesol and warm baths work to help take away some of the pain. The baths are great.... till you have to stand up!! And the donut!! well that's just a miracle product.. except for the car... I'm 6' tall and when I try to use the donut in the car.. my head hits the ceiling. For those of you that are having a flare up and are buying time till your lancing or removal.... there's a way I stand up now that I've found to ease my pain greatly...First.. make sure you only sit where there's something supportive near by.. such as an arm rest, a table, a wall.. that will help you greatly.. Second when you go to stand up... grab that support and lean forward, wait a few seconds to allow your body to adjust, b/c I've found that a little pain at a time is better than overwhelming pain that then throbs as it goes away. After you've waited a second or two gradually roll your back around till you get it into an upright position.. and I'm saying gradually.. Yes you'll feel like an elderly person.. but you'll be able to walk with a little less pain... so gradually.. as in slowly... ROLL your back around to an upright postion... hopefully this will help a few others out there till they make it into their appts. I kind of thought I was freak when this first happened to me... being as the doctor made it a major emergency to drain it right away... but I'm glad he did, and I now know what to do and what to expect this time.. Take Care and Best Wishes to all of you out there! if you want to contact me, please do at taytays9904@aol.com !!!!

Date:

March 27, 2004

Story

Reading these stories gets spooky at times, as so many of your stories mirror mine so closely. I fell in December 2002 and was in pain ever since (15 months). I used to be a bicyclist, and I have missed the last 2 consecutive MS150 bike tours due to the pain. I, just like many of you, figured I had broken my tailbone, and visited www.coccyx.org which is a great site about coping with tail bone pain. I saw a back specialist, who was just a stooge for insurance companies, said there was nothing he could do, but wanted to do an MRI. Many months ago, I developed my first leaky cyst, but I thought it was merely a boil. After a while it cleared up. I did notice a lump back there, and I was afraid that calcium was building up on the broken tailbone. Then, about a month ago, I was jogging and when I got home i had a golf ball sized lump that popped over night, releasing an alarming amount of fluid. I found this site thru Jon at coccyx.org, and thats when I found that I had pilonidal. I saw a doctor, and had the full removal surgery done last week. I'm starting to feel better, but I was in pain for much of the week. I guess the bizarre part of my story is that I fell 15 months ago, and it took 14 months for the cyst to really form and show itself. - Chris, krystoferstuck@hotmail.com

Date:

March 25, 2004

Story

Hi. This is pilonidal65@yahoo.com. Some of this may be repeated, but I had symptoms of the cyst in early January. I already had it removed twice so I was dreading having to go through this again. After looking at it closely, I thought it was a false alarm because the blood was coming from an area inside the cleft below the intersection of the tailbone and the butt crease. The doctor diagnosed it as something that can be healed with antibiotics. But it turned out to be a pilonidal cyst that flared up again and I had it removed on March 3. I had the wound left open to lower the chances of it coming back again. The healing process hasn't been as painful as I expected. This is probably because the cyst is slightly inside the cleft. But I still have to get my dressing changed once if not twice a day. I think I will have to do this for another month. Has anybody tried to have laser hair removal treatment in the area to try and prevent recurrence? I am thinking about doing that after my wound heals. I asked my doctor if he thought it was a good idea and he just said that it wouldn't hurt. If anybody has done this, please let me know and also let me know if you have had recurrence or not. Thanks! Sincerely, pilonidal65@yahoo.com.

Date:

March 25, 2004

Story

Hi..my name is Scott..I am a 24 year old from southern New Jersey. I discovered I have a Pilonidal cyst when I was 19. When I first found it, I went to a doctors office and had it officially diagnosed, but I pretty much had a good idea what it was already. My dad had one when he was my age, so he told me all about it. I pretty much ignored it until one night the pain was so severe that I could not sit, stand, or lay down in any position comfortably. I called my doctor who told me to go to the ER. At the hospital, they opened the cyst with a scalpal and drained it...I remember the digusting smell of it, and I also remember being terribly embarrassed by the fact that I was butt naked laying down with some woman probing around my butt. However, the instant relief that came when she drained it was MORE than worth it... That was 4 years ago...I have lived with the cyst ever since then. They gave me antibiotics to kill the infeciton, then recommended surgery, but I have just dealt with the occasional flare-ups. What made me come to this site is two days ago it flared up again and is REALLY aggrivating me now. I made an appointment with my doctor; I decided it's time to end this once and for all. My suggestion to anyone who has this thing: Get rid of it. Its not worth the constant maintainance required. I had to drain it myself alot...and it stained alot of my clothes....Its also in a very inconvenient place for a gay man if you know what I mean :) At any rate, take care of it....it may be an inconvenience to have it surgically removed, but that is nothing compared to the inconvenience of living with it.

Date:

March 24, 2004

Story

Niecy again... I see so many people asking questions about this that I decided to leave my email address. I had mine drained about 70 times before I had it removed so I think I can answer some questions!!! nmccoy317@aol.com Feel Free

Date:

March 24, 2004

Story

I have had a problem with pilonidal cysts for 6 years. I was to afraid to have it removed (which my surgeon kept suggesting). I kept hearing about how it's a man's disease. So once a month for 6 years I was in his office having it drained. The last time it filled up (in Nov 03) he said that I have got to have this thing removed. So I went into surgery in Dec 03 and I haven't felt better in my entire life. The healing process was so much less painful than have an infected cyst.

Also I recently found out that my grandmother suffered this problem in the late 1950's and her doctor told her she couldn't have any children. They actually had her in a full neck to ankle body brace for a little over a year. I guess they've come a long way!!!

Niecy

Date:

March 24, 2004

Story

Hi there, I am a 31 year old male from UK. I first noticed the tell-tale tailbone terror when I was 20, I had been back from a snowboarding trip in France, I had a nasty fall on my ass and put it down to this. Two days later I was in agony and went to accident & emergency where they diagnosed a pilonidol sinus. They gave me painkillers, antibiotics and magnesium sulphate to draw the 'poison' to the surface. And it did just that! After 5 days of using this medication I was in full fever like state and extremely unbalanced and dizzy, in fact I fell down twice. At this time I decided to do the turn around and check in mirror routine, the bedroom mirror was some 10 ft away, and as I bent down POP the tennis ball size lump burst and spurted over the mirror, projecting over the said 10 feet. The resulting split from the burst eventually required 2 stitches (thats some burst), then I was put on the NHS waiting list... So some 8 months later had my first operation, where they stitched it up with around 6 stitches. It then took around 4 weeks to recover pretty much fully. Then 6 years later again I gave my tailbone region quite a painful bang when I was out climbing, and again within 2 weeks I had another infection. This time was straight into the medication and it went down within 10 days, however, got put back on a NHS waiting list for a further operation. So 10 months later had the operation, I was under the impression it was going to be similar to the first as the doctor really did'nt tell me anything. Wow I woke up with a gash 3inches (6-7cm) long and down to the bone. I was shocked. Anyhow dealt with, kept stil for a while and healed within 3 months. Now 5 years on its back! To the left of the original this time, back on the antibiotics and back on the NHS waiting list for my 3rd operation,,, I wonder how long the NHS queue is this time? Anyone else had 3 ops? Is there a correlation between banging the tailbone region and getting this disorder? If not why me? Im quite an active person and the idea of 3 months lying on my tummy depresses me. rob gvi@37.com

Date:

March 23, 2004

Story

Hi I’m back! I’m the 31 year old female SJ. Anyway, I was saying that it was really embarrassing to be questioned about the cyst. So when I went back for my follow up, my doctor told me I would eventually have to have another surgery or just live with it. I opted to have the surgery, but with the holidays approaching and a new job, I decided to wait until Feb 2004. This time the doctor said I’d be out for 10 days and I’d be very sore. I had the procedure done and this time they put me out. I was in a real hospital, not just the office, so I was very nervous and cried again. After I woke up, my doctor told me I had an infection again and that he had to cut more out than he thought. He said he had made an incision down the center and hole to the left where the cavity from the cyst was located. He basically said it would be an ugly sight for me or anyone else looking at it for a while, which prompted me not to look at it for a week. I did feel it though and was completely intimidated by the sheer size and depth of the hole. Luckily I knew from my first experience that the secret was not to stray from the Vicodin and keep very clean. I had a sheet of aftercare that the nurse had my boyfriend sign off on, so I was pretty well educated. My biggest problem with the whole thing is the amount of time it has taken to heal. I had the procedure on Feb 29 and I am not healed yet. I stayed home from work for 3 weeks all together, which was not the estimated time away from work. I suppose it was because I had another infection to cut out. I am now off of the Vicodin and moved on to Darvoset. I barely ever take it, which is amazing because the wound is still open and leaking clear fluid (normal). My mom bought me Depends Undergarments which don’t help, they bunch up. I have opted for a panty liner and a pillow to sit on. I am very thankful that I discovered this website and my pilonidal journey is coming to an end. My doctor said I will be amazed at how little scarring there will be when it closes up. I am feeling less and less ashamed by this every day. I keep being honest with more and more people. I feel I have learned quite a bit and would like to offer up my email for anyone who needs someone to talk to about it. There is a light at the end of the tunnel! terebinthiaquimby@sbcglobal.net

Date:

March 23, 2004

Story

Hi. I am a 31 year old female who had my first sign of a pilonidal cyst back in September of 2003. One Saturday morning I woke up with a strange sore feeling around my tail bone. I first assumed that the sore feeling was a pulled muscle or something. A few years back I fell off my bike onto my rear and the feeling was similar, so I assumed I was just temporary. I also worked in retail management back then and thought perhaps I had done something to myself running around like a madwoman as I often did. I sucked it up that day and hobbled to work. It was not a fun day, but I survived with some Aleve. Sunday I woke up feeling even worse. I went to work and attended a meeting where we had to sit on the floor. I was in complete agony and very embarrassed. I knew I needed to see a doctor right away and that it was no pulled muscle. The next morning I went to the doctor. After several painful pokes and prods my doctor told me I had a pilonidal cyst and it was infected. She then referred me to a nearby colon doctor. She prescribed me an antibiotic and told me to call the colon doctor right away. She also warned me surgery was in my near future. After I left, I tearfully called my mom, who to my utter surprise, knew what it was and had one herself when she was younger! She said she never had surgery, but struggled with it for a decade. She said that after the initial flare up and infection the cyst would fill up once in a while and she would have to expel it herself. She told me nobody ever suggested surgery to her and that she eventually stop having symptoms. She said mine sounded worse than hers ever was and said I should go ahead and see the colon doctor. When I went to him, he confirmed my condition, prescribed a new antibiotic to better combat the infection and some Vicodin. He then scheduled a removal of the cyst. He gave me a note to miss work for a week. I then had my first surgery, which was minor. He removed the cyst and left the famous "packed with gauze" hole. I was in some major pain after the local anesthetic wore off and even cried at the drugstore while picking up my new prescription. My doctor had me buy a shower head that has the long hose and I kept the wound very clean that way. As long as I remained on the Vicodin, showering was not painful. After the week off, I returned to work where my boss and the human resources manager took me into the office and asked me many questions about my condition. Them both being male, I was completely mortified at having to be so graphic with my explanation! I guess I’m out of room, I’ll write more soon. SJ

Date:

March 22, 2004

Story

I am writing on behalf of my son who is 14. Last summer he was diagnosed with the cyst after falling on a trampoline and having tremendous pain in his tailbone area. He had the area drained but the surgeon recommended surgery since he would be going into football in the fall. Five days after surgery an artery ruptured while we were changing the packing. Finally we got the incision healed enough for him to play football after missing half of the season. This weekend part of the incision reopened - 9 months after the initial surgery. We are going to see the surgeon in the morning. Your site has been helpful though. I just would like to get this thing healed once and for all. I think part of the problem is that my son is just too active.

Barbara, Madison, WI

Date:

March 21, 2004

Story

Hi everyone, I am a 20yr old male from england, I first noticed some pain in my tailbone a few months ago, I visited the doctor who informed me it was just an abcess (at this time I had never heard of pilonidal sinus' or cyst) he gave me some flucloxacillin and sent me home, a few days later it burst and secreted a foul smelling brown pus. Then all the pain died down, the wound healed and all was well. Until 15th march 2004, I woke up with a dull ache in the same area the previous abcess was, it was then that I began to fear it may be something serious, so I scoured the internet for info and stumbled upon this website, I phoned the doctors to make an appointment for 16th march, Well by the time I woke up next morning the pain was horrendous, I could hardly move I had a look in a mirror and spotted a small bump that was liquid filled and looked like a blister, went to doctor who said we will try antibiotics first (after seeing this website previously I knew antibiotics are as much use as a bucket with a hole in!)but the doctor wouldnt listen, I was sent home and just rested all day, two days passed, By Thursday 18th March I could bear it no longer, I went to the doctor and begged for help, he wrote me a refferal letter to the local hospital, By Thursday night I had been admitted to hospital and was pumped full of pain killers, On friday 19th at 9:30am I went under general anaesthetic and had the whole cyst/sinus removed. I woke up feeling strangely ok, but very hungry, They sent me home that night, I have a wound that is 2cm L x 2cm W x 5cm D. The district nurse for my area visits every morning to flush the wound and pack with kaltostat alginate, Im a little confused still with the speed it all occurred as less than a week ago the thought of pilonidal hadnt crossed my mind, But thanks to this site Im on the road to recovery, Thanks Everyone Lee

Date:

March 21, 2004

Story

Hello everyone, I went to the surgeon for what I thought was just an appointment but he decided to remove the cyst right there. It was pretty painful when they used the lidocaine to numb my butt, but after that I calmed down and everything went smoothly. Apparently I am lucky because I caught mine so early. The doctor said he had never removed one so small, and that even though he didn't want to say he was 100% sure, he was confident that he may have gotten the whole cyst and that I won't have to return for the "real operation"!!! I was in quite a bit of pain for the week after and the packing of the wound was not exacly fun, but if I stayed up on taking the pain med when I was suppose to it was bearable, I mean hey I'm still alive right. Anyways, at first after the removal of the cyst I thought it was the worsdt thing that ever happened to me, but now, I realize I was very lucky. One thing I think is very important for everyone with this condition is to talk about it openly. Don't be embarassed, its not your fault and its not as matter of being dirty. Tell people exactly what it is. I have been very descriptive with my friends family and co workers. I think this is absolutely necessary to help prevent other people from waiting too long to get it looked at. Before I got diagnosed I had never heard of it, since I've been talking to people, I ran into 3 fairly close friends that went through the same thing and I had never known. Think about if they would have told me about it, I would have caught it even earlier. Andrea

Date:

March 20, 2004

Story

I am a 31 year old female and had my first experience with a Pilonidal Cyst last week. First I noticed a bump on my tailbone and thought that maybe I my tailbone out of whack. The next day the area was more tender and I started to worry, so I looked up tailbone pain on the net and decided I had injured my coccyx(tailbone). With each passing day the pain got worse and the bump had grown to the side of my left cheek - I thought my tail bone had moved to the side because it was broken. Finally a week after I first started feeling pain, I hobbled to Kaiser and was "seen" by some random doctor. He didn't examine me, he just walked in and told me there is nothing they can do about tailbone injuries, that I would be in pain for a while till it healed on it's own and prescribed me Ibuprofen. By that night the pain was so severe I could not stand, lie down, sit or stop crying. The next day I was pleading with the hacks at Kaiser to PLEASE give me some pain medication - I made four calls, got one call back promising to call me right back with a prescription, but ofcourse they didn't call back. About this time I noticed a wet feeling on my backside and realized that i had an open wound and it was leaking. I finally figured out that I had a cyst of some sort and got even more pissed at Kaiser. Went to a different doctor at Kaiser the next day and was told they didn't think the sinus was very deep and that hopefully it would not come back. They gave me prescriptions for antibiotics and I went home and fired them. I am now reading up on this disease and am going to take care of my healing wound as best as I can - LOTS of great information on this site THANK YOU THANK YOU THANK YOU!!!!!!

Date:

March 19, 2004

Story

Dealing with a Pilonidal Cyst AND Herpes-- I have read quite a few of these stories and am starting to feel like I'm the oldest woman with a pilonidal cyst! I just started have this type of flare up at age 49 (now 51). They aren't very severe, but the doctor insists I come in every time and then I have to come back to be sure it has healed. Plus, I worry I will become immune to antibiotics. Mine have been averaging about twice/year or more. As if the cyst isn't enough, I also have genital herpes thanks to someone years ago who didn't EVEN tell me he had it. My doctor gives me pills for both (I'm beginning to think it's hard to tell if it's herpes or just the cyst bothering me). So if anyone has had this double whammy, hope to see your story. And best of luck to everyone else with their recovery.

Date:

March 19, 2004

Story

Hi, My name is Diane, Im 30 years old, and live in Middlesbrough,united kingdom.Since Last Thursday, 8 days ago,11th March,2004,I suddenley woke up,during the night,with horrible pain, near the crack of my bum.Since Ive had lots of major surgery over the years,on my spine, I thought it was my cocyx.This pain went on, for a few days, and On Tuesday, 16th March,I had to go and see my gp, as It was agony.I was given VIOXX,for the pain, as he thought I had coccydynia, (a posh word,for a pain in the bum), or tailbone pain.I started the tablets,but to no avail. On Thursday night 18th March 2004,My husband had to call the emergency doctor out, as I couldnt sit,or lay down,The pain was excrutiating,and Ive never,ever experienced pain like this,in my whole life.Even goging to the toilet was pure agony. I was taken by ambulance to the casualty depatment,at my local hospital,and was given gas,and air for the pain,(what you are given in Labour). The doctor examined me,and I was taken for an xray,At the moment,Ive been given 2lots of antibiotics,but they arent helping.The doctor said I have a pilonial abcess,which is pressing on my cocyx,and I now have to go,and see my spinal surgeon on Monday, so he can confirm it,and see what he can do. Im in agony, and the top of my bum,(near the crack), is red raw,I cant sit,even on a cushion,as the pain is intolerable,even though I have a high pain threshold. Im just wondering what will happen now,Will I keep getting this, or can I have surgery to get it removed,its hell,and I cant put up with it much longer,I know its only Friday, and Ive got to wait until monday.God knows how I will ever get through the weekend. Please email me,Id love some support thankyou diane jackson dmj19@hotmail.com

Date:

March 15, 2004

Story

Hello all...

I am a 21 yr old mother who developed the pilonidal cyst about 3 months after I had my 1st child. It started out as a bump that itched.. and then it started to bring a head. I showed my husband and he said it was just a boil and to treat it on my own. So I did just that. It would get real big and then pop on its own and pus and blood would comt out. It kept coming back. I didnt want to go to the doctor because I felt so embarrased that I had this (what I thought was a boil) and have to show the doctor because of the area it was in. So I have been putting up with the pain and the discomfort all this time. Its been 2 1/2 yrs now since I first got the cyst and I finially got up enough nerve to go to the doctor last week and she confirmed that it was a pilonidal cyst. She set me up with an appointment to see a surgeon on March 23rd.. I am so nervous to have this done. Do they put you to sleep? or do they just numb you?

Im so glad to hear that Im not the only woman who has got this cyst. I've heard that its most common in men rather than in women. I'm not a hairy women neither, and to hear that it all starts with a simple hair? sounds so weird to me..lol anyways....

Sorry its so long but If any of you have any advice for me just let me know. Thanks..... Brooke

Date:

March 15, 2004

Story

HELLO, I AM A 33 YEAR OLD MAIL THAT DEVELOPED MY FIRST PILONIDAL CYST AFTER BEING DRILLED IN FOOTBALL PRACTICE AND LANDING HARD ON MY TAILBONE. AFTER A FEW WEEKS I STARTED BLEEDING FROM AN OPEN WOUND AND A GUY NOTICED IT WHEN I WAS IN UNIFORM FROM IT SOAKING THROUGH DURING A GAME. TALK ABOUT EMBARASSING ! WELL IT CLOSED AND WENT AWAY FOR ABOUT SIX MONTHS UNTIL THE START OF MY SENIOR YEAR. WHEN IT BEGAN TO REOPEN AND STARTED LEAKING ALL OVER AGAIN. I REMEMBER FOR A WHILE IT WOULD LEAK A DRY PUS AND WOULD JUST COME OUT IN ONE BIG GOB. WELL IT WAS 1988 AND I HAD NO IDEA WHAT WAS GOING ON. SO TOWARDS THE END OF THE YEAR IT CLOSED UP AND I GOT THE BIG BUMP EVERYONE OF US DREADED. I WAS DELIVERING PIZZAS AT MY JOB WHEN IT BURST AND INSTANT RELIEF CAME UPON ME. I WAS FINE FOR A FEW YEARS AFTER THAT UNTIL I WENT TO A AMUSEMENT PARK WHEN I WAS 21 AND DEVELOPED A SMALL ONE I GUESS FROM ALL THE HARD SEATS ON THE RIDES. I SLICED THAT ONE WITH A STERILE RAZOR BLADE AND IT WENT AWAY. THEN SOMETHING WONDERFUL HAPPENED. I WAS LAYING DOWN ONE DAY AND I FELT BACK THERE AND THE BUMP FELT HARD AND I SQUEEZED IT AND SOMETHING SOUNDED LIKE A SNAP. SO I FELT BACK THERE AGAIN AND STARTED PULLING ON SOMETHING. AMAZINGLY, IT MUST HAVE BEEN THE INGROWN HAIR THAT CAUSED THE FLAREUPS THOSE PAST YEAR BECAUSE 15 YEARS HAVE PAST AND NO FLAREUPS SINCE ! GUESS I WAS LUCKY OR THE MAN UPSTAIRS WAS SMILING DOWN AT ME. GOOD LUCK TO ALL WHO SUFFER FROM THIS DISEASE,

Date:

March 12, 2004

Story

Hi,

I have to start by thanking everyone that has posted here about thier experiences. I am 24 a guy and have been pretty healthy my life and pretty lucky no broken bones three sets of stitches and a tonsilectomy and I do not get sick that often so I am an easy patient for my doctor I only see him when I have to. I just found out two days ago what a pilonidal syst was cause I had one. I had a sharp pain by my tailbone for about a week and I figured that it was just a bruised tailbone. I decided one night to put some Icee Hot on my tailbone to try to ease the pain. Not a good idea. When I was washing off the Icee Hot I noticed a lump. Nothing big I thought till I had to leave work early cause I could not stand to sit any longer. That night my dad made an appointment for me to see my doctor, against my wishes. So I went in. Told him what was going on and he wanted to have a looksie. Next thing I knew he was on the phone looking for a surgeon that could remove the thing ASAP. Then he took me into an exam room and lanced it. Which is no easy thing for me to experience as I have a severe phobia of needles. After I left the doctor feeling much better I came online to see if I could find out what the heck was going on. I was taking the red pills and some Ibpreufin (nice stuff 800 mg), that is when I found this site and was reading the stories, which made me shudder and cringe and think what have I managed to get myself into. Today I am going in to talk to the surgeon with my list of questions from the site to see what happens. He may take it out he may not (hopefully will). The strange thing I am finding about this is that not many people know what it is which is a bad thing when you are trying to get on FMLA and things with work. It is not like you can plan this thing 30 days in advance. If anyone cares to chat about anything with me you can reach me at dfdalamar@hotmail.com.

BTW anyone in Idaho that could use front row tickets to see Metallica let me know I kinda got this pain in my butt that won't let me go *lol*

DAL

Date:

March 11, 2004

Story

Hi this is Amanda again for the official last time!! I had my surgery on February 5th, and I am now officially healed. YIPPEE. My only discomfort through this whole process was that the tape part of my packing irritated my skin pretty badly so it was really itchy, with no way to scratch it. I just want to let everyone know that even though this can be a very scary thing to go through it doesn't mean it is going to be a painful horrible experience. I experienced no pain, unless I applied alot of pressure to that area directly. Couldn't necessarily sleep on my back but I stuck a pillow between my knees and slept fine. Was driving and going places within a week. A hint for people with the open wound which I think I might have already said this but oh well, ask your doctor about cauterizing your wound it will speed up the healing process. Bye bye for now!!!

Date:

March 09, 2004

Story

When i was in the 10th grade (about 13 years ago) i got my first cyst. not having any clue what it was and thinking the pain near my tail bone was from dance class (had a move that we hit the floor). within a few days, i couldnt sit back, then had to sit to the side to the point where i couldnt sit with out major pain at all. i finally got my grandmother to take me to a clinic. they lanced it, darined it (i guess) and stufted it with gauze. i had to soak 3 times a day then they removed the gauze, not sure how long after. dont remember the healing process, just that it did and it never bothered me again! then monday morning (3/8/04) i felt the pain, it swelled a little and was red. i found this site and am blown away by this "disease". i also realized that my son has the "dimple" and am now worried for him as he gets older, especially cause hes a hairy little bugger (thanks to my french blood). luckily i somehow remembered the doc saying BOIL EASE and bought it and applied it. as of tonight i am almsot pain free from it. i do not have insurance as of right now so i cannot go to see a doc. i will sahre this site with others and use it. thanks for all u have done here. Cheryl

Date:

March 09, 2004

Story

Well I am 17 year old girl, who has never really heard of this type of cyst before till i developed one. I was grieving the loss of my grandfather in January of this year and we were having a type of memorial service and all weekend but butt had hurt so i suffereed even though there was a bubble the size of a lemon on my butt. That Monday I woke up and could hardly move I showed my mom and she made me go to the hospital where they lanced it open and the doctor said I would need to get it removed when the infection was all gone. I was like ok so we scheduled it for April. Well of course my plans wouldnt work because three weeks later I had already healed and was being taken to the emergency room to get it lanced again. That was fine, but as of today March 9, 2004 I am as nervous as I have ever been in my life because Friday the 12th I go in for my procedure. I will come back though and tell you all my experience.

Date:

March 09, 2004

Story

I had surgery to remove my pilonidal cyst the summer that Bobby Kennedy was shot (1968). I was preparing to enter my freshman year of high school. It was my third surgery. Ether was used to knock me out for T&A and appendectomy. Back then, having one's tonsils and adenoids removed was a very popular procedure. For the pilonidal surgery, a spinal was used to numb me. The surgeon also killed two birds with one stone by removing a rather pesky plantar's wart from my big toe. So I woke up with an open wound on my foot and a closed wound on my ass! Both healed nicely with no reoccurrences. But my recuperation was remarkable because I started to present with symptoms related to narcolepsy. Ironically, these symptoms were not accurately diagnosed as such until 1990! That summer, I started to pass out during horseplay (cataplexia). I also noticed that I couldn't make it through the day without napping. To further complete my medical docier, I am prone to mild eczema patches. I was also treated for several years for cystic acne that blossomed at the age of 18. Subsequent surgeries were related to OB/GYN issues (endometriosis, C-Section, hysterectomy). My last operation was performed by reopening an old incision. I developed some God-awful infection that, I believe now, was related to an auto-immune trigger (my body's inability to ward off bacterial infection). Researchers at Stanford (CA) have recently identified the cause of narcolepsy: patients with the disease are lacking a peptide (neurotransmittor, hormone) identified as HYPOCRETIN. Given the timing of the two, I have always suspected that the pilonidal cyst and narcolepsy were somehow related. Since Sasha posted an article in 10/02 from the New England Journal of Medicine that linked eczema with a peptide deficiency, I've started to wonder if there's a connection to these and a whole host of other conditions.

dmamsquared

Date:

March 09, 2004

Story

Hi I am Dana I live In Michigan and I have been living with cysts all my life. I have had 60 some cysts sence I was 12 and I am now 23. I have had multiple surgeries for cysts and I have encountered almost every kind of cyst you can think of. I did not have experience with PILONIDAL cysts until about december of last year. it was large and left a huge scar. I just had another one lanced and I just noticed another one popping up. I had a Ganglion in my right wrist when I was 13 and had it removed at 18 when I could no longer move my wrist at all. I also have polycystic ovarian and endometriosis so me experience with cysts has been long and painful. I think that the medical team at my local hospital all know me by name now... lol. I try to keep in high spirits but my self worth has been tried time and time again. I have not been diagnosed with the desease yet but I know I have it as this wll be the third one I have had. I don't know much about it but I am learning.I can take all the support I can get so maybe someone can im me icyqueenvampyre or mail me claudvamp

Date:

March 08, 2004

Story

I dont know if you guys remember me, my name is Cindy and Im 19 years old... I had a pilonidal cyst and it was removed on Jan 26 2004... i took about a month for recovery... it hasnt even been a month i got back to work.. today i went to the doctor and i have another cyst.. lucky me.... I have to get surgery AGAIN.... im going crazy about this... i dont even wanna think about the pain..... the recovery... the pills that kill your stomach.... grrrrrrrrrr... i was expecting not to go back to the hospital for a long long time.... oh well... things happen for a reason... im going to see the surgeon again on friday.. wish me luck... oh wait.. dont even bother that wont happen luck and me are like water and oil... we dont get along lol.... cindy0485

Date:

March 08, 2004

Story

I'm a 36 yr. old male. I had a lump exactly where everyone describes it, up near the tailbone...it was painless...ignored it for fear of the unknown for two years. The wife kept on insisting on getting it checked...I dodged on one pretext or another...chicken. I have a habit on sitting on my tailbone (slouching) that must've triggered it. An extended two weeks sitting in the office 12 hours a day then did it. The lump started to become painful...to a point where I couldn't take it...went to the dermatologist...who immediately pointed out that it was "jeep bottom"/PILO NIDAL SINUS (a WWII ailment (because of the constant bumps on the tailbone by the hard seat of the jeep)) and recommended a surgeon. I was advised surgery under general anaesthesia. The surgeon treated it with antibiotics first to dry up the infection and then went for the excision two weeks later on Jan. 21, 2004...it was a 8 cm by 2.5 cm deep scoop. It is an open wound. I must say that I had very little pain even 1 day after the operation...am still draining though after 6 weeks. I have been dressing it twice a day...and have taken it easy. I hope there is no recurrence. Main cause was a broken hair follicle. This site has been a fantastic source of information...I didn't know that PILO was this common...everyone thinks that I've had one of those butt operations i.e., piles etc. Today, I feel better.

Date:

March 07, 2004

Story

Hello everyone, I am a 21 year old female and noticed that my tail bone was "leaking" for a couple weeks, but just thought I had a sweating problem or something. I have back problems so I just thought the pain was moving lower into my back. Finally, I made my mom look at it and she insisted I call the doctor the next day. I went to my primary care and he told me it was a pilonidal cyst but that he didn't know much about it. Thats when I went to the internet, and boy am I freaked out. I go see a surgeon for the first time tomorrow. I'm real nervous but I just want to get it taken care of and I'm glad that I made someone look at it before it got as bad as some of you. Wish me luck!! Andrea

Date:

March 05, 2004

Story

Hello all. I first realized i had a problem down there three weeks ago. Just a little pain around the tailbone, so I didn't think of anything serious. A week later I thought I started to grow a tail, more later on i thought i was changing into a monkey with a shiny red-purple butt. Anyway, the pain was unbearable, so i went to see a doctot, who immediately scheduled surgery. Two days later I had my cyst removed. Now i have a sponge in the wound, and a tube which comes out of it, a so called vac-pack. Well, changing the sponge is a bit of a pain in the ass, but I'm quite happy with how this all goes. I can sit comfortable, provided I take a break standing up every hour for ten minutes. Thanks to the vac pac I dont need to change packaging of the wound twice a day or so, nor do I have to rinse it daily. I do recccomend this procedure: Do not close the wound with stiches or so , but leave it open to heal from the inside out, and opt for the vac pack option. The vacuum pump device is a mini-vac by KCI http://www.kcimedical.com/Products_Mini_vac.html and its easily portable. I just hope I'm done with that one and for all, and it continues to go on well. Best of luck to everyone here, and thanks for this site. It sure helped a lot.

Date:

March 02, 2004

Story

Hi everyone! I'm a twenty year old female. I, like most of you, also have Pilonidal Disease. My first cyst occured a year ago while I was home for Christmas vacation. I was 19 at the time, first year away from home at college, and I had absolutely no clue what was going on with my body. I couldn't sit with full pressure because it felt as if I was sitting on a huge marble and it hurt! I couldn't sleep on my bad or even on my side for that matter. The pain kept me awake for the longest time. I'm not a person that easily goes to the doctor. I think that someone else said that they would wait until their "body cycled through it" and I'm definitely one of those. But when you can't function on a normal basis and it hurts to even walk I figured that it was time to seek medical attention. I go to school out of state so my parents took me to my doctor before they took me to the airport. He prescribed me antibiotics and i responded beautifully. The cyst dissolved and I went on with life. However, after one year it returned. This time is was worse than the time before. I went to a doctor last Friday where they lanced it. I wish that I had done my research before I went in because the shots are what got me. They had to stick the shot into the cyst and move it around so the numbing solution would reach the whole area. I don't think that I've ever been in so much pain before! Not to mention the re-packings where they don't numb the area. But I'm happy just that the experience is over. I'm leaving for Spring Break on Friday morning but I was wondering...I couldn't find how long it takes for the lanced area to completely heal. So if anyone has an estimate and wouldn't mind letting me know at their convenience then that would be lovely! Hopefully my cysts won't return, and if they do then I've definitely weighed surgery. However, after reading some of hte posts about surgery I'm not so sure. Thanks for everyone else's posts. It's nice to know that other college students are going through this as well.

Date:

March 01, 2004

Story

What's up guys and girls. Well, it's been 1 year and 7 months since I had my cyst removed surgically. I posted a message back on May 9th, 2003. I was really getting pissed on how slow my surgical incision was healing....but now it is nearly closed! I am 21 years old and I am a college student...so having a big hole in your ass where a cyst was can be quite the self esteem deflator.....so I know what you people are all going through. I just want to say that surgery was a good option for me. However, you must be able to take a little pain. The part of the rehabilitation process that hurt the worst for me was like the second week after the surgery, boy was that cut sore. And then there was the waiting....waiting for the damn thing to heal. Apparently hot baths are crucial to the healing process, because it cleans the mucas out of the wound and gets any loose hairs out.....I didn't have a bath here at college so that's why it took so long to heal. Anyways, I hope you all make it through this like I did, as I said in my other post almost a year ago, if I can do it, you can too. If there is one thing I've learned from this experience, it is this: whenever someone says something is a "pain in the ass", they have no idea! haha :) Good luck everyone! If anyone has any questions or concerns about the procedure or anything else, please DON'T hesitate to shoot an email out to me -Adam Milwaukee, Wi.

Date:

March 01, 2004

Story

IT CERTAINLY SOUNDS LIKE I GOT SOMETHING THAT MUCH YOUNGER PEOPLE USUALLY GET. AT AGE 59 MY CYST BECAME INFECTED. THAT WAS THE WORST OF THE PAIN I SUFFERED. THE DOCTOR DRAINED IT AND GAVE ME ANTIBIOTICS TO GET ME READY FOR SURGERY. MY CYST WAS REMOVED AND LEFT A HOLE 3 INCHES LONG BY 1 1/4 INCHES WIDE BY 2 1/2 INCHES DEEP. WHEN THE YOUNG FLOOR NURSE REMOVED MY PATCH TO DRESS THE WOUND, I HAD ASKED HER A QUESTION. WHEN THERE WAS NO REPLY, I TURNED AROUND AND HER MOUTH WAS MOVING BUT NOTHING CAME OUT. SHE STUTTERED THAT SHE HAD NEVER SEEN ANYTHING QUITE LIKE THIS WOUND. IT IS NEARY HEALED SHUT JUST ONE MONTH LATER. MY HUSBAND HAS DONE AN EXCELLENT JOB PACKING IT EACH MORNING. 2 PRODUCTS REALLY HELPED. ONE WAS THE "BALMEX" HE USED ON THE SURROUNDING SKIN BEFORE HE TAPED THER AREA, AS IT WAS BECOMING SORE FROM THE CONSTANT USE OF TAPE ON THE SKIN. THE OTHER PRODUCT WAS "INTRASITE GEL" (SMITH+NEPHEW). IT AIDED IN QUICK HEALING OF THE WOUND AND KEPT THE GAUSE FROM STICKING, FOR EASY REMOVAL FROM THE WOUND EACH MORNING. I KNOW THIS SOUNDS GROSS, BUT IT REALLY WASN'T THAT BAD. DISCOMFORT AND PAIN WERE VERY MINOR...AND I AM RID OF IT! I WAS BACK ON THE JOB, AND A VERY PHYSICAL ONE AT THAT, AFTER 4 DAYS. I HAD A GREAT SURGEON IN THE PITTSBURGH AREA. HE KEPT ME OVERNIGHT AT THE HOSPITAL, AS WE LIVED A BIT OF A DISTANCE AWAY. I HAD A COMFORTABLE RIDE HOME. FORTUNATELY THE NUMBING OF THE AREA HAD NOT WORE OFF.

IF YOU CAN FIND A GOOD DOCTOR, SURGERY IS A GREAT SOLUTION TO GETTING RID OF THE PROBLEM.

J.J. IN PA.

Date:

March 01, 2004

Story

I'm a 26-year old female who just had an abscess lanced and drained today. Apparently, I'd had this two times before, but it went away on it's own and I thought it was muscular from pushing myself too hard on playing squash or dance class. This time, it was 10 days before I decided to go to a doctor, and only when the first visit's solution proved no good that I went back and a different doctor realised the problem immediately.

What surprises me the most is the inattention that these authors have had after the procedure. It may be that I'm super-lucky to be Canadian and our medicare system is famously good, but I've been instructed to get packing and dressing changed daily by a nurse and not touch it, take a shower, or anything similar. I couldn't see the wound if I tried, it's so thoroughly bandaged.

I hear you all re: the painfulness of this condition and it's cures. Right now I just feel so relieved, despite soreness. I was prescribed painkillers and antibiotic, for safely measures. However, it strikes me as wrong for patients to be told to poke around an open wound on their own. Even though I'm one of the last people to seek medical attention because I feel I can either do it on my own or let my body cycle through illness naturally, surgery is serious stuff.

Best of luck to you all. I think my cyst will have to be removed eventually, but right now I'm looking forward to a proper nights' sleep. I have learned from you all to be careful with my sitting while this thing heals.

Date:

February 29, 2004

Story

I am so glad I found this site!!! It makes me feel better to know that I am not the only person that has this terrible thing. So here is my story. I have just been diagnosed with this unheard-of-till-now disease. I am a 20 year old female whos life was normal and uneventful till this last year. I found out that I have polocystis ovarian syndrym, scoliosis (19* curve in my back), boarderline type II diebetes, and had to get glasses for the first time. So when my tailbone started hurting I was thinking.... What Now?!?! It started about two weeks ago. On a Tuesday my tailbone felt rather sore. I didn't think anything of it since I was recovering from a night of dancing at a wedding reception that Saturday night. (My calves hurt soooo bad... I wonder if that was what triggerd it...) Each day it got a little worse. On Thursday it felt like there was a bone at the top of my crack and was realy tender. One of my friends said that was what it was like when she chipped her tail bone. By Friday I went to see my chiropractor. He checked it all out but since I hasn't fallen or hurt it he didn't think it was broken. Something about my joints being inflamed. He put me on the muscle pad twitcher thingy.(Bad idea!!) About an hour after that I could feel something pulling on my tail bone when I walked. He had me put cold packs on it thru the weekend. By Saturday it was terrible. At work (as a Bank Teller) it hurt so bad sitting down and getting up and it was only for 4 hours. Leaving there was even worse when I had to get into my car. That is the worse seat in the world for a Pilondial person. I had called up my chiro. and told him that it was worse so he said that he would X-ray on Monday. By that night I felt the top of my crack and a bump had appeared. Kinda like a blister but long and narrow about .05 inches. There was also a white dot in the middle of it. It looked like I was growing a tail. That realy shocked my husband who till now thought I was over exagerating this whole thing. Since this last year I keep coming up with all these illnesses. On Sunday I was in even more pain. Just layed on my sides all day since on my back it felt like there was a golf ball under my tailbone. Monday I called in sick to my job and went to see the chiropractor at 9am. He took one look at the newly formed bump and told me that it was a cyst. He made an appointment with a doctor so I could get in right away. Turned out that my doctor who had been away on maternity leave, was back for her first day. At 1pm I went in to have it lanced. I am so thankful that it was my very nice doctor rather then on of the other 2 male docs at the same office since that next hour was my very worse experiance with pain. She used a needle to put local anesthetic in to the area. Well that was off-the-chart-pain for me. It put even more pressure on the area. After it got numb she started pushing on it to release the puss. It hurt but not near as bad. I was sweating all aver too. Then the smell came. A first I thought it was whatever liquid that she was using to clean it. When I asked and learned that was the puss coming out of my own body that got me rather grossed out. She worked at it for a while and got as much as she could out. (she felt bad since I am a big baby and it was hurting so bad.) She put a gauze bandage on it and gave me a antibodic medicine (Cephalexin) and had me go home (driving my self). That night I took a long nap and when I woke up the pain from the pressure was gone that it I felt so releived that the soreness didn't hurt that much. The next day I went to work just sore. It broke open and started oozing puss so I had to keep pushing on it and changing that gauze all day. Wednesday I couldn't get anything out. On Thursday I went on a long car ride to a town an hour away. It started hurting bad again. I thought that the hole has closed up. I was sure that if I didn't get to the doc on Friday and get it cut open again that the weekend was going to be miserable. That night I figured out how to get it out my self. I laid on the bed twisted around to the mirror I had proped up and had a light on the bed too. I could see the whole area and was able to use my first two fingers to apply pressure to either side of the incision. I was able to get a bunch out that way. Yucky!!!! Friday I felt a lot better. Sat & Sunday even better. I can't get anything out of it now and it has gone totaly down. So now I am at a wait and see point. After all I have found out from this site I am not sure what to do. Get surgery or wait to see if it pops up again. Good luck to everyone and send some my way too.  Karissa

Date:

February 27, 2004

Story

Hello Everyone...

This is probably going to be long and boring - but please bear (bare??) with me. I am a 29 year old woman, who is getting married in 4 months (exactly 4 months from yesterday). About 2 weeks ago I developed an abcess - it hit me like a ton of bricks. I made a doctor's appointment with a new physician who took one look at it and told me I had to find a surgeon NOW and that I had a pilonidal cyst. So... I found someone who could see me the very next day - thank God I didn't need a referral because the doctor's office has a very strict policy about giving them 3 days to provide the referrals (whatever!!!). Anyhow, I went to see this surgeon and he seemed nice enough until he started to numb my butt in order to lance the abcess. Although I will freely admit that I am a little bit of a scaredy cat when it comes to anyone poking or prodding me, this was very painful. I made my poor mother come in the room with me (a little bit of a scaredy cat, huh???) and the poor thing almost passed out from my yelling and screaming from getting this thing lanced. I do not think he gave the novacaine (or what ever he used) time enough to kick in, because although I could not feel anything on my skin directly, I felt everything inside. He also made some smart ass comments about the pain I was in, saying to me "I didn't feel anything... what's your problem??" In my book that is completely unacceptable. He also told me to pull the wick out on Saturday. Which at that point in time, I didn't know how long the wick was. Thinking this was going to be a breeze compared to what I had just been through, I jumped in the shower, took the 27lbs. of gauze and tape off my butt and just stood there for a minute to let the water run on to the wick. So, then I started pulling (gently of course), when I tell you that I saw stars, I had to get down in the tub because I thought I was going to pass out. Finally I got the wick out (over a foot long, by the way) and just layed there in the tub. I could not believe he would tell me to pull something like that out of myself. Is that normal?

So, I went for a follow up visit this past Tuesday and he said I was healing nicely, his wife asked me how I was feeling (like a million bucks I said) and then he said to come back in two weeks and walked out of the room. No further discussion, didn't even ask me if I had any questions for him. NOTHING!!! So, I called his office the next day to see if he feels surgery is definitely required in my case and to see if I could wait until after my wedding. The secretary called me back about an hour later, she said "The doctor said he told you that you would require surgery, and yes you can wait until after your wedding."

I am scared to death of this surgery - I cannot endure the pain of pulling that wickout everyday and getting a new one in. I know myself - and I simply cannot do it. If I didn't have to get it packed - I would do it tomorrow. But I know that the packing is the best way of healing.

Some advice for a scaredy cat???

I have read a lot of the stories posted here, some horror stories and some good stories. I am just looking for a little advice on the packing pain (was on percoset (sp?) when the abcess was lanced and it didn't do a damn thing), although I stopped taking those in two days.

My fiance feels I should have the surgery before the wedding, however, what if I turn out to be one of those horror stories and am not healed, or at least well on my way by my wedding? I cannot put the wedding off, it would be way too much money to lose. Anyone have any thoughts on this?

Thanks for sticking around until the end, I appreciate it - I wish all of you the very best in your recoveries, diagnoses, lancings, stitchings, packings, and everything else that's involved with this!!!

We are troopers!!!

Kristi2245

Date:

February 25, 2004

Story

Hi, I'm 17 and I was 16 when I first got my cyst. I really was scared at first because the thing would bleed when I went to the bathroom, and it was only like 1-2 cm big. So I went in for surgery, after 45 min I was done. The next day I took the gauze out to take a shower, BIG MISTAKE, I started bleeding so bad that I had to go back in to get the thing cauterized. I would imagine that I was bleeding for around 6 straight hours, just gushing. After about 20 million doctors appointments and checkups, I'm still not completely done. It's been 7 months so far, I've missed football and almost all of my junior year of high school, and I still am not done. I've had this little half centimeter hole for about 2 months now, if anyone can help that'd be great.

Date:

February 25, 2004

Story

Hello all. I posted back in January and I had my surgery two weeks ago. I am due to have my sitches out on Friday. I had the closed emthod, and I went all the way under general for my anesthesia. Thank goodness too, because my surgeon told me that my cyst was the longest he had ever removed. Istead of a 1-2 inch incision like I bargained for, mine is 7-8 inches, and runs from my tailbone all the way down to my....well, you know. IT has been a painful recovery, but the pain meds really help. I flirted with infection in one of my stitches, but immediatly saw the surgeon and got on antibiotics. One thing that helps if you have yours stitched-- one of the nurses told me to lay nude and let oxygen get to it for a few hours a day. This helped clear my infection and has helped me feel much better quicker. Anyways, I hope to be stitch free in 2 days and thanks to everyone for your stories--they sure helped.

Date:

February 25, 2004

Story

I've had a pilonidal cyst since I was 14 years old (I'm now 32). I had it lanced the first time, then just dealt with it all the subsequent times. I was diagnosed with Type II diabetes last year and was told that ANY infection is serious. So, after my last flare-up in Jan, 2004, I decided to see a surgeon. I opted to have the cyst removed in his office, rather than the hospital (big mistake). He told me the anesthesia needle would "pinch". It did a hell of a lot more than that!! After the third needle (and many tears), I finally went numb. He removed alot of scar tissue. As he started to cauterize, the anesthesia was wearing off and the pain was immense. He gave me more Lidocaine before he started the stitches. He did the "closed" method and I must say, I am glad he did. The recovery was wonderful. The incision is only about 1-2 inches long. He gave me Vicodan, but I only took it a few times, the pain wasn't bad at all. I just had to soak in a warm tub twice a day until the stitches were removed. It has now been 2 weeks since my surgery and I feel almost 100%. I know if I tried to do a situp, it would hurt a little, because it is still slightly sore, but I feel pretty darn good. My surgeon told me that using the open method rather than the closed hasn't shown to be any better at preventing any reoccurence. I highly recommend using the closed method.

Date:

February 23, 2004

Story

Hello, My name is Kristene. I am 21 years old. My first cyst occured when I was a freshman in high school. The pain was unbearable and the cyst was about the size of a golf ball. My doctor diagnosed it as a boil and had to drain it a couple of times. When it wouldn't go away he sent me to another doctor and he advised me of the situation. I then had my first surgery. About three months later I had to have a second surgery because the doctor didn't realize it was so deep. After the second surgery everything healed up as nicely as expected I guess. I thought it was pretty gross myself. Then around September of last year I started getting the tale tale symptoms yet again. So I went to a different surgeon and had yet another surgery. Third times a charm, right? Not in my life! After having a pretty shaky recovery, I went back to work as a CNA. I started noticing that my not completly healed "hole" started draining, bleeding, and getting bigger. So I went back to the doc and had to have ANOTHER surgery, which was a re-excision and a Z-plasty to sort of keep my skin from healing so tight because I have so much scar tissue. So, here I am 21 years old, 4 surgeries, and my future still looks sort of grim because I'm still not healing the way I had hoped. I just want to wish the best of luck to everyone. I know exactly what you are going through. This is a wonderful web site. I just wish I could have found it sooner:(

Date:

February 23, 2004

Story

I can't even remember when I first noticed the drainage but it was a long time ago, maybe at the beginning of high school. I'm now a sophomore in college and I had my first surgery before my freshman year, but it didn't heal completely. My surgeon had stiched it all up, that is a big mistake I think. From what I know now it seems it should be left open to heal on its own. So then I had to have surgery in college and that was two thanksgivings ago. It hasn't completely healed, but it is almost there. This morning though I noticed that some of the scar tissue that was the first part to heal is draining, so I am panicking...I'm going to see a doctor this afternoon so pray for me. I just thought though that I'd let you know some of the tips my nurse, a wound care specialist, is using. Silver dressings work really well, but are sort of painful at first, also there is a new product out now that is silver gel and silver powder. These two along with twice weekly cauterizations (i know..it is very painful) really helped to clear up this last stubborn part. I used the gel every day after I showered and the nurse used the powder after she cauterized the wound edges. Also last spring when it was still really open we realized that we had to be very very careful about hairs growing on the edges of the wound, as that will prevent healing. I think a combination of all these really have helped heal it...I wish we had known about the silver dressings and powder earlier, I might not now be worried about this top part that healed on its own... I really hate this...usually I can forget about it, but I'm so tired of having to show my backside to doctors and nurses. i know it is their job, but I'm pretty shy and this is very emabarassing for me. Well, I really wanted to put a completely healed story up here...not today, but one day. Meanwhile, I hope this goes better for everybody else, good luck!

Date:

February 19, 2004

Story

Here is my non-extreme cyst experience. I received my first diagonis that I had a pilonidal cyst at the age of 18. I was in a lot of pain, went to the emergency room and had the cyst drained and packed (this was 1000 times worse than my removal surgery). I did not have the actual removal of the cyst until 10 years later. Why... because it never bothered me until I had a very bad flare up November 2003. I went to see my doctor and she convinced me to get rid of it. December 17, 2003 I had the surgery, and let me tell you.. it was a piece of cake! I did not even go to the hospital, I had the procedure done in the doctor's office. The surgery took about 20 minutes and I did have anesthics. After the surgery, I walked out of the doctor's office and hopped in a cab. Even after the surgery I had no pain, granted the area was sore and swollen, but no pain. I had about a 2 inch deep wound and the hole itself was about the size of a quarter. The worst part about my entire surgery was the tylenol with codeine the doctor gave me, it made me really dizzy. So I stopped taking it and realzied that I didn't need it anyway because I wasn't feeling any pain. Taking the packing out felt really weird, but my Mom was there to help. Flushing and cleaning the wound was annoying, but not difficult or painful. 10 days after my surgery, I went snowboarding for 2 days (I live on the east coat so it was more like iceboarding... and I fell on my butt a couple of times and my cyst was fine). If you are reading this, I hope your experience is as easy. I read some of the stories on this site before my surgery and I paniced a little. No worries, odds are your surgery will not be as bad as some listed here.

D from NYC

Date:

February 18, 2004

Story

I can't believe so many people have this disease. My first bout with it was when I was 18 years old. It went away after a few weeks, but as I was getting ready to go on an LDS mission to Argentina, I went to the doctor. He told me it could flare up at any time, and told me that in the worst cases could leave a hole as big as my fist after surgery. He made me make a fist. After browsing this site, I realize this is only in extreme cases. As luck would have it, it returned my first month in Argentina. I was NOT going to go to an Argentine doctor, so I stuck it out. It was the most painful thing I believe I have gone through. I could barely walk. It burst on it's own, stinky and gross, and after a few weeks I was back to normal. I had another flare up a couple years later, but it went away on it's own again. I was careful to keep the area clean and shaved. Luckily, I have not had a relapse, and didn't have surgery. I am 46 now, and hope I have outgrown it. It hurt more than hemorrhoids. I don't know why I have been smitten with so many excruciating butt diseases. I guess though, I have been one of the lucky ones.

Cary

Date:

February 18, 2004

Story

Hello Again everyone. I wrote my story on Jan 13 (20 yr old female) about my pilonidal cyst. I finally was able to get an appointment with a surgeon to see about removal. My surgery is to be on March 1st!! yikes!! I'm a little nervous since the doctor told me to expect to be out of work for at least 3 weeks. In which time I am expected to spend most of my time lying on my side in bed!! I am seriously hoping it isn't going to be that bad!! My only consolation is that the hospital where I am going for the surgery is only about 5 minutes or so from my house. A nice quick car ride so that I can come right home and into bed!! My grandmother, who retires this week, is already planning what she's gonna make me for lunch!! I guess that would be another thing to look forward too!!! Well wish me luck!! Nicole

Date:

February 18, 2004

Story

My name is Jayne, and I am a 28 year old woman from the UK.

Having looked at this site a few times recently I have found it really useful prior to and after my surgery.

My story started I guess when I was born. I had a small 'dimple' that wasn't noticed at first, however as a small child my mother took me to the family doctor to see whether it was ok, and the doc told her not to worry unless it started to give me any pain.

I never experienced anything till about 2.5 years ago. I had been away for the weekend with a friend and on the 2.5 hour car journey home (luckily my friend was driving) I experienced excruitating pain around my tailbone and couldn't get comfortable. Luckily I had a pillow in the car and grabbed that to sit on, balancing on one cheek most of the way home. A memory I will never forget not for the right reasons!!

Anyway, when I got home I took some painkillers and went to bed to try and sleep the pain off, not really thinking anything much about it.

Next day, the pain was still there - upon inspection the area around my tailbone was red but no lump had appeared. I took the day off work as was finding it difficult to sit down.

Next day the pain seemed to be even worse so I went to the doctors to get it checked out. The doctor said i had a cyst and prescribed 2 weeks worth of antibiotics and booked me in for drainage in 2 weeks time, if the cyst had not come to a head and burst naturally. I was advised to have salt baths every day - easier said than done!!

Well the two weeks felt like a lifetime... the cyst swelled up to the size of a golf ball and i was in constant AGONY!!

The day before the drainage was due - it burst in my sleep - yuk- what a mess - however, such a relief as the acute pain and pressure had instantly been released.

Went back to the docs for a checkup but no further action was taken.

All was well thereafter till Nov 2003, one sunday evening a dull pain started in the same area, but I tried to ignore it!! By the next day at work, I was struggling to sit down again, I thought oh god here we go again. The following day I went to my doctors (different one than last time as since moved) and he diagnosed an abscess and prescribed antibiotics for two weeks. There wasn't much swelling until a couple of days later when it swelled up to golf ball size again. A couple of days later I was in constant pain, crying all the time with the discomfort, unable to wear underwear, sit down etc so I went back to my Doctors and he immediately referred me to A&E where I was admitted for drainage that day under general and an overnight stay.

Once again the pressure had been relieved, but was extremely sore for a couple of days. The painkillers prescribed made me feel sick and gave me chronic constipation. So I stopped them after a couple of days and just took regular antiflammatory tablets. After two weeks rest I returned to work. However, since the 26th November to the 12th February I have had the district nurse come every morning to pack the wound and change my dressings.

Unfortunately there was no improvement in the healing from Christmas to February and an infection was detected. More antibiotics were prescribed and then I had a follow up with the surgeon on the 5th Feb.

He told me that I had Chronic Pilonidal Sinus disease, which is what made me look at this site for more information.

Last Friday 13th :-( I went to hospital and had surgery to have the sinus and surrounding area cut out. The wound has been left open with the sides stiched ?? to encourage healing from the inside. I was in alot of pain after so was given a morphine injection to help.

The nurse still comes each morning to pack it and change the dressings and will be expected to continue to come to do this for at least another 8 weeks (and that's if all goes well) so reading some of your stories I guess some of you have got off quite lightly.

I wish anyone having the drainage or surgery all the best, I am still in some pain 5 days after but still think it must be worth a try if there is a good chance it won't reoccur as I never want to have to go through this all again.

To those choosing to live with it, well that is your choice, but to be frank I think you must all be barking mad as surely you should take your health more seriously than ANYTHING??

Next day I came home

Date:

February 17, 2004

Story

I am a 60 year old grandmother and had pilonidal cyst surgery 4 weeks ago. I just wanted folks to know that someone older might have to experience this as well as people in their second and third decade of life. Now I understand that a lot of episodes I had throughout my life were infections of this cyst and sinus openings that went undiagnosed. Once, in an ER, the doctor thought that, because of a couple of earlier tailbone injuries, there might be fragments of bone causing this type of infection. I am glad I had this surgery though I am discouraged with how long it takes for an open wound to heal. I did not know beforehand that I would be left with a large opening (approximately 4" long, 2" wide and 2" deep) that has to heal from the inside out. I wasn't prepared and informed enough to ask good questions of my surgeon before the operation. Finding this website beforehand would have helped. I had general anesthesia and was extremely sore all over my torso following the surgery. (From the positioning during surgery.) It felt like I had pleurisy around the lung area, but went away in a couple of days. My husband is my "nurse" and we are trying to do a good job of cleaning and packing so there will be no infection. I found the coccyx pillow (purchased at a medical supply store)to be very helpful for sitting and wish they had sent me home with one. Instead it was two weeks of painfully sitting on one "side" or the other. The best advice I got was to allow time for this to heal and not overdo too soon. I made a pallet on the floor in front of the T.V. and became a bum for about 3 weeks. Pain meds were needed for the first two weeks, but, as mentioned in this site, the pain dropped off drastically after that. I was very glad to find this website. It helped me get over the initial shock of what I had been through. Thanks to Sasha for taking the time to bring all the information together in an easy-to-read, thorough, helpful website.

Date:

February 17, 2004

Story

I am a 36-year old male. I was diagnosed with pilonidal disease about 4 years ago. It all started with a very, very, very, tender tailbone when I sat down. I am an engineer, so I spend a lot of time at a desk or on a plane. These painful episodes would occur about 1-2 times a year. Early on, I just experienced the discomfort without any noticeable symptoms. I finally broke down and went to the doctor when a small pimple appeared concurrent with one of the painful episodes. This small pimple located off the centerline of my tailbone ruptured and drained fluid. The disease was diagnosed and I was prescribed an antibiotic and told to knock down the infection then follow-up for a surgery. I took the pills, got rid of the infection, felt well, and went on with my life. The painful tailbone and pimple appearance/drainage occurred about 2-3 more times then I finally scheduled the surgery.

The Monday after Thanksgiving 2003, I went into a day surgery center at 7:30am. I opted for the full unconscious anesthesia. The surgery lasted a little over 1 hour. A little after 9:00am I awoke completely disoriented. After getting my senses back I could feel a numb pain on my backside and the gauze pad covering most of my backside. The Doctor had told my family that he excised the cyst and primary sinus and had performed a primary closure of the wound. He noted that it was a deep incision he had to make.

I went home with a painkiller prescription. I slept all of Monday and most of Tuesday. I stayed on the painkiller as prescribed every few hours. I changed the dressing for the first time on Tuesday. My wife said I had an incision about 2 inches long with around 10-12 stitches. All bleeding had stopped and we used an antibiotic ointment and peroxide on a q-tip to gently clean the wound.

Some things started to heat up around the office so I went into the office on Wednesday for just a few hours. I could only stand as it was too uncomfortable to sit. When I came home I went to bed and hit the painkillers. I went in about a half day on Thursday and Friday then came home to the bed and painkillers.

The weekend after my surgery, I started to come off the painkillers and moving around better (although very gently). I could not do any bending/lifting as I could feel the wound pulling against the stitches. I was a freak about keeping the wound clean and not pushing my body too hard. I would stand at my desk at work and lay on my side on the couch to watch TV. I would only sit to drive a car or go to the bathroom. Everyday I would feel just a little better.

I had my first follow-up two weeks after the surgery. Good news, no infection and the wound was looking good. The Doctor wanted to be conservative so he gave me another week with the stitches to keep the wound closed and give my wound more of a chance to heal. Three weeks after surgery, the stitches were taken out and no infection present. The Doctor said to be careful as the wound could still pop open. If this happed he would re-open the wound and pack it to heal from the inside/out. I continued to stand at work and take it easy around the house.

I went back for a follow-up four weeks after surgery. One very small part of the wound had opened up. The Doctor said to take a q-tip with peroxide to clean inside the hole nightly. With no infection present he said come back in two weeks. Six weeks after surgery I went back for my last follow-up and everything was healed tight!!!

If I had to do this all over again, I would not have pushed to go back to the office as quick as I did. That first week after surgery was by far the toughest and I should have been home in bed, not working half days.

Date:

February 12, 2004

Story

I found this website a couple months ago through some online forums I'm a member of, and would first like to thank everyone who has contributed to this remarkable place. Were it not for this site, I'd still be sitting around wondering why stuff is leaking out of the top of my butt.

A little over a month ago, I was experiencing what I've now found to be, of course, a pilonidal cyst. I have four open sinuses, which were actively draining the cyst. Thus, the pressure hadn't really built up. However, the main sinus had lots of granulated tissue (body trying to cover the hole), so I had to go get some work done on it.

He first removed the little cap on the main sinus, and proceeded to clean all the sinuses out with what I call the evil scrubbing brush of death. Long, thin, with evil bristles at the end, for removing clots of hair at the bottom of these things. It hurt considerably, because the local anesthetic was neutralized by the infected tissue. For four weeks now, I've been undergoing a repacking process twice daily that I don't read about too often. A strip of gauze is pushed deep into the cavity on the end of a wooden Q-tip. This also hurts considerably, and I'm currently taking 800mg motrin and 10/1000 vicodin (10mg hydrocodone, 1000mg acetaminophin). It helps some, but not nearly enough.

I went to see the doctor again yesterday, and he said the words that sent a chill down my spine. "Looks like we're going to have to get you to the operating room." The disease was deeper than he thought, and removing the entire area appears to be the only option. He says he'll perform an excision, close the wound that day, and install a drain tube. Having never gone through any type of major surgery before, I am absolutely horrified. I've never been unconscious, and local anesthetics have a habit of not working for me. We're hoping to schedule the procedure for late next week, since I'm also a full time college student. Doing it later in the week will hopefully provide me enough time to recover so I may attend classes the following weeks.

I just noticed the message board link off to the left, so I'm going to go look at that for a while.

Jared

Date:

February 10, 2004

Story

Last February, 2003, I fell on some ice and hit my tailbone on a concrete step. I developed a large, golfball size growth on my tailbone about a week after. The growth drained completely in the shower one day, but never really healed properly. Now, I have a quarter sized ring that is soft in the center just to the side of my tailbone. It drains probably 2 to 4 times a week, no matter how clean I keep it. It seems like it goes away, it scabs over, builds up, and then drains again, at any given time, too. Pretty gross. I never have had any pain from it, even when itwas large (I could feel it when I was sitting, but it was not painful). It does itch sometimes, like a wound heeling. The draining is more annoying than anything, because it ruins underwear, bed sheets, etc.

Dr. said it is a cyst, and I am scheduled to have it removed in 2 days. NOt looking forward to it, because I know absolutely nothing about what the surgery entails, if they will knock me out, if I will be able to drive home, if I will drive the next day, if I will need stitches, etc.

Date:

February 09, 2004

Story

It's nice to see that I was not the only one who had surgery on February 5th! Here is the short version of my story.. I was sick with the flu on Thanksgiving weekend and spent the whole time on my fouton. Monday morning, my tailbone was killing me. Thinking it was from sitting on the fouton, I made an appointment with my chiropractor. I felt a lot better after my appointment, but still had some discomfort. When I woke up Tuesday morning, I had a lump on my tailbone about the size of a chapstick tube. I called my doctor and was seen immediately. As soon as he came into the examining room and looked at it, he said "Be sure to thank your parents, that's a pilonidal cyst and you've probably had it since birth." He said that he would have to drain it because if I didn't, in the next few days I would be in too much pain to walk. The following Thursday, I met with the surgeon who stated that she would have to wait 6 to 8 weeks before the operation because it was drained. I had my surgery at about 7:30 in the morning on February 5th, and was home by 10:00. I My surgeon decided to stitch me up instead of letting it heal open. I was surprised that I was able to sit down without pain or discomfort. The only uncomfortable moments are getting up, I just have to be careful when I do. I have not had to use the pain killers that were perscribed. I was driving the day after the surgery and seem to be getting around okay. I have had to change the dressing once since the surgery, but my discharge papers state to discontinue using the dressing after 2 days. All in all, I think the worst part was how my throat felt after the surgery because of the breathing tube. Definetly worth having the surgery and enjoying a two week vacation from work :o)

Date:

February 08, 2004

Story

Hi, my names Amanda and I posted my story on January 15th, starting off with "This site is amazing". I recently had my operation (Feb. 5th) and it went absolutely perfectly. I am sitting on my butt right now, so in other words no pain!!! I've fealt nothing, not even the packing being changed hurts, so I guess I am very fortunate. The only downside is that I think that the surgeon missed an abcess. I think I had two one on the right and one on the left, actually I'm pretty sure I had two even my family doctor said so. So all in all the surgeon removed the left one and forgot the right one. Let me tell ya that is was the right one that got horribly infected and bad and the left one hardly did anything. So I will probably have to go in for a second surgery, oh well, that's life. So all in all just wanted to let those of you who are going to be getting the sugery that it's not as bad as what alot of people say. Got questions e-mail me at loree_oboe

Date:

February 05, 2004

Story

Well, to start the story off, I am going to let you know that I was not only 7 months pregnant when I started to have a slight pain at the end of my tailbone, but I was on my Honeym oon too!! Anyway, I started to feel a little pain and noticed that it was a little difficult to wear that (special) underwear that my new husband wanted me to wear. We were only going to be gone for the weekend but by the first night Saturday night I was having to lean onto one side just to be able to sit down. By Sunday morning I could only lay down. Boy let me tell you was I glad that it was only a 2 hour, although it seemed like forever. That Monday my Mom, Sister, and Husband held me down on the bed while they "tried" to pop it. I literaly passed out from the pain. Tuesday morning I couldn't walk with out looking like I just rode a horse. We went to the ER and the doctor to one look at he gave me a shot in the Butt and asked if I could feel anything. When I said no, he said good because I have already cut you open and you are actually squirting it out because there was so much pressure. Of course I couldn't see it, but when he came around to my front, I actually saw where it had squirted on him. Needless to say I got a fever and had to stay in the hospital for a few days on account of my pregnancy. My new husband got to pack gauze in my butt for the first 2 weeks of our marrige. Oh well, I guess that shows how much he loves me. :) That was a over a year ago and I haven't flared up since!

Date:

February 03, 2004

Story

I totally came across this page by accident and had no idea what I was reading about until I read what a Pilonidal Cyst is. I then realized that that is what a doctor told me years ago that I had. I was 18 and in my first year of college. I was in an extreme amount of discomfort when sitting. I had had a bike accident a week or more before the pain so I thought maybe I had chipped or broken my tailbone. Being stubborn and away from home at college I dealt with the pain for as long as I could. Finally after confirming my insurance with the college I went to the campus health center where I saw a doctor. After reading how these things get misdiagnosed quite often I am surprised that the doctor told me that it was indeed a pilonidal cyst. The doctor prescribed Cephalexin and that was it. He did not ask to do a follow-up or anything, just "here's your drugs, now be on your way". During the time I was taking antibiotics I indeed noticed a pungent oozing from the area. Not knowing any better I squeezed at the area and expelled as much of the pungent ooze as I could every time I would shower (I was showering a lot those days). Within weeks the pain and swelling and the oozing went away. Now almost exactly 10 years later I have not had a single flare up and honestly had forgotten the ordeal until reading the information at this site. I have always noticed a small bump right there which I assume to be the sinus but have never had any other problems or pain whatsoever since. Hopefully there is no mental tie to this that will cause a flare up just by thinking about it again. Good luck everyone.

Rob H.

Date:

February 02, 2004

Story

Hi all, I'm a 24 year old woman, who has been suffering with Pilonidal for 6 months, but now I know it's probably been years. I had my surgery on 2nd December. The surgeon stiched the wound up with disolvable stitches (which didn't disolve and had to be wrenched out with an instrument which looked like a pair of pliars!!!) Anyway the wound was infected within a week and it's been nearly 2 months and I'm still not healed.Just when I thought I'd had enough pain and suffering (I also had a nasty experience in A&E with a useless doctor!!) I went to see my specialist nurse at the hospital. She called the surgeon because the wound had got really quite bad. Well, he decided he was going to cut the wound open so that the infection under the skin could drain away and be packed......unfortunately he didn't give me any anaesetic!!!!! Ouch. Still not healed. Had months off work now and I am starting to get quite depressed. Just want a normal active life again. It's reassuring to know you are all out there, although I wouldn't wish this disease on anyone. Sara

Date:

February 02, 2004

Story

Hello all. Great site. I am currently 24. My first experience with Pilondial Disease happened a year ago. I noticed that whenm I sat down there was disconfort for a few mintues, and it almost felt like I had bumped my tailbone, which is painful if any of you have ever done that. Well, after 2 weeks it became a little worse and I went to my doctor. I got a shot in the rear end and some antibiotics, and away it went. Fast forward to two weeks ago. It was a Saturday afternoon, and the darn thing started hurting again. I decided to go into see the doctor first thing Monday. When I woke up Sunday, the pressure and pain was worse, but I could lay on my side and it would not bother me. I spent most of the day on the couch. By 8pm the pain was really bad, but I was able to finally fall asleep. I woke up at 2am and when I tried to stand up to go to the restroom, the pain was so excruciating I saw white spots and passed out for a few seconds. I immediatly phones my fiance, and we went to the emergency room. They took one look at it, put me in a gown, laid me on the table, numbed it and cut it. Boy, that felt good--all that pressure gone in a matter of seconds, although they began packing it with gauze and that hurt like the dickens. At any rate, my fiance is a nurse which is a big plus. She has changed my gauze twice a day for th elast 2 weeks. I go back to the surgeon in 2 days to schedule my surgery to have it excised. Thanks for the site. It has answered a lot of my questions and has cleared up most of my uncertainty about having the surgery. I'll let you all know how it goes.