Personal Stores Archive #5

Date:

Monday, October 29, 2001

Story

This is for those of you who have just been diagnosed with a pilonidal cyst or self-diagnosed your symptoms by looking on the web. The info I found on the web was scary crap, and I have found most of it to be misleading. Not all pilonidal cystectomies (I made that word up for the surgery to remove it) are problematic - but, like any other surgery, they can have their complications, most of which are detailed in all their glory in one corner or another of the web. My experience has not been nearly as bad as one might think from reading the misinformation on the web, and is probably more in line with the norm for this surgery. I am a 26 year old male, and probably had my cyst since at least junior high, since I remember how much sit-ups in PE hurt my tailbone back then. I never imagined it was a problem, or that such a thing as a pilonidal cyst existed, until I was around 24, and noticed an asymptomic bump on my rear while taking a shower - very small (no more than the size of a small pea). A doctor immediately disgnosed it, and I went to three different surgeons for opinions on treatment (Happiness is...having a PPO). One surgeon said to cut, two others said not to (at least not until it became a problem). Since I was in law school, and since it really had no symptoms (I had no drainage and no pain), I held off. Cut forward to about three months ago. I had just gotten back from my honeymoon, and, thank you long plane flight, my cyst began to hurt. I knew what it was immdiately, talked to my doctor, and was given some antibiotic to treat the infection. I also set an appt up with my surgeon, since I knew it was time to get it taken out. But before the appt arrived it REALLY began to hurt. I mean REALLY - to the point that I couldn't walk, sit, stand, or anything without being in excruciating pain. Still no drainage, though, just a red bump about the size of a walnut now (it had grown from the size of a pea over the course of two years or so). I finally couldn't take the pain anymore, and woke my wife up early in the morning to take me to the ER (I'll never forget the day, 9-11, since I heard of the attacks while doubled over in the back seat of the car). Now, while the horror stories may be misleading, the pain was very, very real. It was even worse in the ER when they shot local into it and lanced it. I nearly passed out from the pain - man, I thought the Lord was coming back. I have NEVER felt such pain in my life, and I am an athlete who has suffered pretty bad injuries before (torn rotator cuff, fractured arms, fractured ribs, etc.) But, oh, the relief was it was drained. I felt 90& better,and they did was open it up fo me. I now realize the pain was largely due to the pressure - apparently I had built up an amazing amount of pus in a very small space. As I would find out later, my cyst was not very large (yet) and had not yet developed sinus tracts to "spread" the pus out and lessen the pressure. I was sent home with my ass packing gauze and was happy I had already made an appt to see my surgeon. I saw my surgeon shortly thereafter. I was told that the cyst did need to be removed, but due to the infection and inflammation, it was not possible at that time. The doctor did say, however, that he needed to open the cyst up more to allow for the packing/unpacking of gauze; the ER doc's cut was too small. I was told that this would hurt alot, and was given the option of general, which I gladly took. (Just so you know, my surgeon also told me that this two-part surgery - one surgery to open it up, and another surgery later to cut it out entirely - could be as much as a year apart, depending on when my cyst stopped oozing pus). So I went to the hospital that day, was admitted, and put under general. Two or three hours later, I woke up and was told that the surgeon, once he opened up the cyst, found it was smaller than he had thought and not as invasive as it can be (i.e. the sinuses had not yet developed), and was thus able to remove it entirely. YAY! I didn't need the two-part surgery! My surgeon left the incision open to heal by secondary intention (i.e. granulation tissue from the bottom to the top). I still haven't looked at the incision (I am like that, helps me heal), but my wife said it was about two inches long by two inches deep, but only about a half inch wide. My wife has been great in changing my dressing (packing the gauze) three times a day ever since then. The gauze has done a great job of cleansing the wound. Every time I removed the guaze there was this yellowish material stuck to it. While I thought this was abnormal, my surgeon assured me it was not - it was simply the bacteria and other junk multiplying itself into the gauze (which is where you want it, rather than in the wound), which had to be regularly changed to remove the junk from the wound. I believe the medical term he gave me for this junk was "exodase". Over time, the exodase lessened, the blood lessened, and I am now almost completely healed. While I am still packing gauze, the hole is about nearly closed up now (so my says, my wife; I still have not looked at it, since it is not my style - I simply let it heal and do its thing). My observations: 1. I should have had this surgery a long time ago. The longer you let these cysts sit, the bigger they get. They keep burrowing and creating a huge network of tunnels, all of which means either a pretty extensive surgery or or high chance of recurrence because it wasn't all taken out the first time. I got lucky that my first flare-up was short-lived and the cyst was removed within two weeks of it. 2. The surgery was wonderful and nothing to be afraid of. The pain after the surgery is maybe 10% of the pain I had prior to the surgery (except for the dressing changes the first week, and especially the first change - WOW those hurt!). I found taking hot showers made removing the packed gauze a lot less painful. 3. These things are an economic hit - I couldn't sit comfortably for nearly 6 weeks after the surgery, and only now can sit comfortably for no more than 2 or three hours. Fortunately, I have a very understanding boss who gave me 5 weeks of paid sick leave, and starting last week I was allowed to work part-time on mission-critical stuff from home while prone on my bed using a laptop. I return to work tomorrow, but only for as long as I can sit - I expect it to be a full day, however. I found that this is actually the hardest part of the surgery - the inability to do anything, especially earn a living. 4. People do recover from these things. I have - no pain, and no bumps or anything else that portends a recurrence. Four other people I know also had these things, and have also recovered just fine and have long since moved on to living normal lives. I can say I learned that I will never take my body and my health for granted anymore - it was tough being laid up and needing support. My body and my health certainly gained my respect, as did the body's ability to heal itself (I mean, I had a freakin hold in my arse!). All a part of growing up, I guess, realizing I am actually not immortal. 5. Prayer works wonders while recovering. Really calms the spirit. So that is my tome. May I be done with this cyst, but if not, I will not even blink at having the surgery again. To others who are considering it, get it done yesterday. God Bless.

Date:

Monday, October 29, 2001

Story

A PILONIDAL WAR VETERAN I am in the military, so you can imagine the difficulty of putting up with a pilonidal cyst in such an environment. I first had one when I was 19; I went to sick call after discovering a lump on my tailbone, and the surgeon there immediately identified and removed it. I'm not sure which type of surgery he performed (what level), but I immediately felt better and showed no further symptoms. That is, until about four years later, when I was stationed in Korea. I began to feel the same type of lump while training out in the field, but due to the lack (and trust) of medical facilities there, I just kept my fingers crossed that it would go away. By New Year's eve, the cyst (or abcess) had grown fairly large and painful. However, I was not going to let it ruin the hotel reservations I had with my girlfriend in Seoul. My girlfriend, myself, and a couple of other friends went to an extremely fancy, expensive restaurant that New Year's eve. I was wearing a nice custom-tailored suit, and I also had on several gauze pads in my underwear to prevent leaking. However, the cyst was in such bad condition, that when I got up after the meal, there was a dark red spot on the seat of the chair! I wasn't sure if it was a stain from something I spilled, or if it was even part of the chair's design! However, I later confirmed that it was my blood after realizing that the back of my dress pants were completely saturated in blood. Needless to say, I did not enjoy that holiday. The next day I was so frustrated, that I took a pocket knife into the shower and physically cut out the cyst myself. Probably not a good idea as I probably bled at least a pint. But the drainage was complete, and it didn't bother me again. That is, until it came back a month later when I was back in the U.S. I immediately went to a dermatologist (civilian, not army) who told me I had only an abcess, probably not a cyst. He gave me antibiotics and that took care of the problem in about a week. I was fine after that. Well, I was fine until a month ago, when in my new unit, for physical training, we were doing sit-ups in the gravel. This is obviously very sensitive to the tailbone area, and surely enough, my fellow soldiers noticed a bloody discharge leaking through my uniform. I have been seeing an army doctor since then. Unfortunately, the army is often slow about medical attention; although I have been prescribed antibiotics, it will be another week before they can operate on me. Right now I have one location on my buttocks where there is a large cyst requiring "immediate surgical attention", and another location that has a small pilonidal abcess. Needless to say, I am in a lot of pain, but I have the battle scars to prove that I can deal with it. I am only hoping that there is a good doctor in Uzbekistan who can help me when I head out there. Any recommendations?

Date:

Sunday, October 28, 2001

Story

Till the date of 23 October to my knowledge I was a healthy 24-year-old male. I've never broken a bone or been diagnosed with any medical condition before. I awoke one morning with a pain on my tailbone and a huge knot. I nursed it with an ice pack, after a sleepless Sunday night; I realized I needed medical attention. I first thought this condition was due to constant sitting, being that I attend college and work full time. My female physician after observing the knot diagnosed it immediately as a "pilonidal cyst". There was an immediate attempt by my physician to apply an anesthetic (painful). I was then told that the operation could not be performed at that time and referenced to a surgeon the next day. I was given a prescription of Levaquin and Tylenol#3. Prior to my appointment with a surgeon, I noticed a oozing of pus and blood from the previous shots in the area of the cyst. I was given shots of Novocain by the doctor (painful) and I really don’t think the anesthetic set in, because I felt immediate pain when the lancing was performed. I was very weak after the operation. I was re-prescribed Percocet. A female friend that observed the process of cleaning the wound, by the doctor, accompanied me, she eventually became weak of the gruesome site and was seen by a RN. I was advised to clean the wound at least once a day, preferably twice, with Q-tips dipped in hydrogen peroxide and re-packing of the wound with a ¼ inch nu-quaze. A few hours after leaving my surgeons office, I felt better not near a full recovery, but a lot better than pre-surgery. Its now day #6 and I am back at work, and feeling a lot better, only a bit nervous about the healing process. This has been the most painful experience in my life. It sure has been an eye-opener as far as placing emphasis on my body and staying physically fit, I don't think I'll ever take my body or good health for that matter for granted ever again.

Date:

Thursday, October 25, 2001

Story

I had a cyst when I was 18. It started with a pain in my tailbone that felt like a bruise. I thought it was from falling on my butt while ice skating. Well, the pain got progessively worse until a week or so later, at Christmas time, I couldn't even sit. I spent my time lying face down in bed with a pillow under my belly while my family went to visit relatives. I saw a doctor the next day; he lanced and drained the cyst and applied an antibiotic ointment. Instant relief! I haven't had any recurrence in the 20 years since then.

Date:

Thursday, October 25, 2001

Story

Hey all, this is just a one time visitor out to give some advice. I got myself a Pilonidal Sinus about 15 years ago when I was in high school -- usual sort of story: physically quite active, but as hirsute as a quarter-cast Sri Lankan can get. Sure enough, after a while, the lump appeared. I didn't know what it was, and thought it would just go away, but it started leaking before long. My local doctor knew what it was straight away and got me to a specialist. He excised it, then I spent eight weeks or so convalescing at home for secondary healing. Sadly, being a naive and irresponsible teenager, I didn't follow my specialist's advice later on, and had to go under the knife twice more when the sinus reappeared. Now, here's the advice: 1) Seek medical advice immediately. This is probably common sense, and seeing as this site would only really attract those with the condition, it probably doesn't need to be said. However, if a repeat occurence rears its ugly head, let your doctor know. 2) Be prepared for a long healing process (unless you're lucky enough to be getting the Phenol). My high school assessment suffered greatly because of my healing time. Don't let it happen to you. 3) Stay clean. Yep, I was quite guilty of going for ages without bathing (one of those teenage things ... although my current girlfriend still reckons I could do with more showers), but for people susceptible to this condition, you can't afford to mess around. Even if it means putting a soapy hand up your cleft, do so. (I ended up using a toothbrush as a scrubber for ages after that. This is probably where that urban legend about the burglars and the camera came from. :) ) Oh well, that's everything I wanted to tell. The scar has almost faded now, and I've got a good job, lots of friends, a lovely partner and a burdgeoning acting career. One more thing: Don't just sit on this problem! Do something about, and the sooner, the better! -- C

Date:

Tuesday, October 23, 2001

Story

First, I would like to say some things about personal histories in general. I am sure that the horror stories on this site are true and that the writers have the best of intentions by sharing their experiences, and my heart goes out to them. I also fear that, despite my surgery, the cyst will reoccur. Regardless, I would like to make a couple of points to those who may be frightened by the plethora of horror stories. I have found that almost everyone I know who has had this condition has been successfully treated. These people do not go looking on the web for websites regarding pilonidal cysts because they don’t really think about it anymore since they were successfully treated. On a site like this, you will get an oversample of people who either a) have horror stories or b) people who were just recently diagnosed or treated. Members of both of these groups are going to be common here because they’re generally frightened and/or frustrated and want to find others like themselves (which is human nature). I fall into group B. While my surgery was very recent (and, as such, I do not know how my story will end), I know six other people (4 women and 2 men) who had this condition, and they all have been cyst free for many, many years now. Three either busted on their own or were treated with antibiotics, and the cyst never came back. The other three had surgeries that were successful. For five out six, the cysts have been gone for 15-50 years now (the sixth had the condition only about 5 years ago). In one friend’s case, the infection was so bad that she had to be hospitalized for a month, but she had the surgery and has been cyst-free for over 15 years. It seems that the people with success stories just rarely post them. I was diagnosed when I was 18 (I am 27 now). My doctor said that if it got bad, they’d have to do surgery. Fortunately, it never got bad until this past summer (which I can attribute to my tendency to slouch and put pressure on my lower back). The only symptoms I had were occasional soreness and light drainage. Early this summer, it got pretty sore. My friend who had been hospitalized for a month scared me into going to the doctor. He gave me antibiotics and told me that they don’t bother with them unless they become infected which mine wasn't. Summer passed and I didn’t get worse until the end of the summer when it was hard to sit. I went back to the clinic and saw a different doctor who gave me a bit of a run around, but when she could find no other reason for my pain, sent me to the colorectal surgeon who took one look at it and said “we’ll have to do surgery. That’s the only way to get rid of it.” I don’t really like my surgeon, but he was the one covered by my insurance company so I’m hoping he makes up in talent and knowledge what he lacks in bedside manner. He’s not rude, but he’s distant. His nurses are more informative and helpful though…seems to be the way it usually is with doctors;). Within a week, I was in for the surgery. The incision was about 4 inches long and about an inch deep. They said it was one of the largest they’ve seen (although considering some of the stories on here, it doesn’t sound that large). Fortunately, my mother was able to come down and take care of me. She changed the packing twice a day for about 2 weeks. Then, she had to leave, and I’ve had a friend do it in the morning while I do it myself at night. The pain was at its worst for the first couple of weeks although I would say that it was never THAT bad. The Percoset was a great help, and they put me on Vioxx for a couple of days due to “inflammation” that was causing pain. With those two drugs, I felt much better. Now, it’s six weeks after the surgery. The incision is about 2 inches long and about half an inch deep. I still take it easy and only sit for about an hour or two at a time. I could probably sit longer but I’m doing everything in my power to rest and make sure it heals well. The pain is very minimal…just mild soreness in the area…nothing for which I need painkillers. I do my best to follow the diet suggestions of the author of this website. I have ups and downs but even the bad days aren’t very bad at all. So we’ll see what happens. The stories on this site have scared me, but, given only the stories of the people that I know personally, I’d say the outlook is good.

Date:

Tuesday, October 23, 2001

Story

October 23, 2001 Thank God for your site. Everywhere I went for information regarding recovery after surgery was SCARY! Of course all of the stories out there seemed to be the horror stories. I am glad that you have some success stories to get me through. The first time I felt that uncomfortable lump on my tailbone I had no idea what it was. At first I thought that I had injured my tailbone in some way, but it continued to grow and get more uncomfortable. I made an appointment with my doctor but by the time I could see her it had started to drain on its own. She told me that it was an abscess and how to take care of it now that it was draining...that was around 1993 or 1994. I didn't have another one for a year or two and it developed and drained within a week or so. The pattern developed until about a year or two ago when I started getting them more often, like every couple of months, and now they weren't draining so quickly. Like everyone else I just lived with it and dealt with it until a few months ago when I finally talked to my new doctor about it. Right away she suggested that I see a surgeon. I have seen my surgeon and am having my abscess "unroofed" in two weeks. After reading some horror stories out there I was terrified about the recovery period. At least now I know that some people survive recovery and are happy that they had the procedure done. I think I'll just hope for the best!

Date:

Tuesday, October 23, 2001

Story

Hi, About 3 and a half weeks ago I could barely sit through my classes (I can only imagine what I looked like contorted in my seat during a 3 hour lecture). A few days after I started experiencing pain I noticd a bump. I thought I had fallen out of my bed in the middle of the night and hit my tailbone. No such luck. A few days later, the bump was getting worse not better so I went to the doctor. He told my upon seeing it that it was a pilonidal abscess. He then proceeded to lance and drain it. That part was painless. I was told to come back the next day to have it packed. It must have been the most unpleasant thing I've ever experienced. 3 and a half weeks later, I'm still getting the thing packed. I think I'm used to the pain of packing because I barely feel when they put it in anymore. The bad news is, that because it has yet to stop draining. I'm going to visit the surgeon tomorrow, and probably have the operation within the next few days. The really painful part now is the tape that holds the dressing on. My backside looks horrible. They have put on and pulled off so much tape in the past few weeks, part of my skin actually started peeling off with the tape. Thankfully today's doctor left out the tape and sent me home with several sheets of gauze that should just sit in the crease. Unlike many of you, I was never told to sit in a warm bath or to rinse the hole out. Instead, I was told to keep it dry. So I've been taping a plastic bag to my butt with waterproof tape. In the past few weeks I've tried 4 different kinds of tapes. The best, 3M Waterproof First Aid Tape. It looks like Scotch tape for people. Do not buy water resistant, it's not the same as waterproof! As I said I'll be having surgery in the next few days and I have no idea what to expect. Will I be back in class a week later, or am I going to miss the semester? I'll let you know next week.

Date:

Sunday, October 21, 2001

Story

Hi everyone! I'm a 20 year old female and my cyst started off alittle different then most on here. I first started noticing mine about 3 years ago. It was only a REALLY bad itch at that point until Oct.1999 when it finally broke open and boy I tell you what how embarassing that was. I had just moved in with my now husband. I had to wear a maxie pad for a week until it had finally stoped bleeding then on and off for a good year it would bleed. Now 2 years later I finally went to the doctors about it...like others I was embarassed to talk about where this problem was. Thankfully mine isnt extremly painful, although I have alot of drainage (gross) and I have been having some pretty bad lower back pain that the dr. feels might be part of this problem so I've been told I need to have the cyst removed surgically. Since I just found out what this was last week I was just searching around the internet to see what info I could find. And let me say this is a wonderful site!! I would have never thought there would be something like this! Well just thought I'd add my story thanks so much for everyone sharing their experiences sure helps knowing what to expect with all this. Thanks again and Good luck to everyone!!

Date:

Friday, October 19, 2001

Story

HELLO EVERYONE, ITS ME HECTOR AGAIN FROM OCT 10TH. I HAD MY SURGERY FOR MY CYST LAST WEEK, WOULD YOU KNOW IT THE DOCTOR LEFT IT OPEN. THE VERY NEXT DAY I BLED ALL OVER THE PLACE. THE BLEEDING WOULD NOT STOP FOR 1 HOUR. BY THE WAY IM 16 YR OLD MALE. THE NEXT 3 DAYS WENT BY WITH MUCH PAIN . LAYING ON MY STOMACH THANK GOD FOR PERCOCET. ON THE FOURTH DAY, I WENT TO THE BATHROOM AND LOOKED DOWN AND THERE WAS BLOOD ALL OVER MY FLOOR. I SCREAMED FOR MY MOM. SHE FOUND A TOWEL AND HELD IT THERE , SHE TOOK ME TO MY ROOM AND TRIED TO PUT PRESSURE ON IT FOR A HALF OF AN HOUR. THE BLEEDING WOULD NOT STOP I WAS BLEEDING ALL OVER THE PLACE. SHE CALLED THE AMBULANCE AND THEY TOOK ME TO THE HOSPITAL. I BLED FOR 6 HOURS STRAIGHT, I MEAN A CONSTANT FLOW OF BLOOD COMING OUT MY BLOOD PRESSURE WENT DOWN TO 16 WHICH MEANS TROUBLE. MY PRESSURE DROPPED 2 TIMES THEY PUT 2 IV'S IN ME AND A CATHETHER DOWN THERE IN MY PENIS AND I NEEDED 3 BAGS OF BLOOD TO REPLACE WHAT WAS LOST. I PRAYED A LOT I CAN TELL YOU. FINALLY ON THE SEVENTH HOUR I STOPPED BLEEDING. THEY WERE GOING TO OPERATE AGAIN TO STOP THE BLEEDING BUT IT STOPPED ON ITS OWN. I WAS ADMITTED FOR 2 DAYS. IM HOME NOW MOMS TAKING CARE OF ME. I AM SCARED TO MOVE OR TO GO TO THE BATHROOM. I WENT BACK TO THE DOCTOR AND HE PUT 1 STICH IN MY BUT BECAUSE IT WAS UNEVEN YOU SEE THEY CUT ALL THE WAY DOWN 5 INCHES AND 3 INCHES DEEP. I HOPE TO GOD I DONT BLEED AGAIN, IM SCARED. IF ANYONE WANTS TO SEND ME A E MAIL ITS BOGALLOO@YAHOO.COM . PLEASE PRAY, PRAY , PRAY, FOR ME. I HEARD YOU CAN GET UP IN TWO WEEKS AFTER SURGERY BUT AFTER WHAT I WENT THROUGH I THINK NOT! LET YOU KNOW MORE NEXT WEEK GOD BLESS.. HECTOR

Date:

Wednesday, October 10, 2001

Story

HELLO EVERYONE WELL, ITS MY TURN. IM 16 YRS OLD AND JUST FOUND OUT I HAVE PILONIDAL DISEASE. AT FIRST I DID NOT SAY ANYTHING TO MY MOM AND DAD, I THOUGHT IT WAS CANCER OR SOMETHING. I WAS REAL SCARED WHEN I SAW THE BLOOD ALL OVER THE TISSUE PAPER. WELL, ANYWAY I JUST GOT MY SURGERY 2 DAYS AGO. THEY LEFT IT WIDE OPEN . IT LOOKS LIKE A CAVE. YOU SEE MINE WAS VERY VERY CLOSE TO THE ANUL HOLE, WHICH MAKES IT MORE DANGEROUS FOR INFECTION. I HAVE BEEN ON MY BACK, FLIPPING OPER LIKE A PANCAKE. AND DRUGED WITH PERCOCET AND ANTIBIOTIC. THANK GOD FOR PAIN MEDICINE. I FEEL A LOT OF PRESSURE IN MY BACK AND GET CONSTANT CRAMPS IN MY LEG FOR LACK OF MOVEMENT. THE SECOND DAY OF MY OPERATION I STARTED TO HEMMORAGE. I WAS REAL SCARED THEN BUT THE BLEEDING SLOWED DOWN SOME. I HAVE ALSO BEEN GETTING FEVER SLIGHTLY, RIGHT NOW IM SAYING I HATE MY LIFE IM SO MISERABLE. WILL THIS EVER END. IF I DIDNT HAVE MY MOM AND DAD, WAITING ON ME HAND AND FOOT I WOULD BE LOST. I WILL BE MISSING A LOT OF SCHOOL BUT I HAVE FRIENDS TO PICK UP MY WORK FOR ME. WELL I WILL WRITE NEXT WEEK TO YOU ALL AND LET YOU KNOW WHATS UP. GOD BLESS YOU ALL.... HECTOR

Date:

Friday, October 05, 2001

Story

Hi Everyone! This is pretty weird, I was surfing the net to find information on "Cronic Wounds"; wounds that haven't healed after surgery - in fact a YEAR in July of 2001! - and came across this site....

At age 14 or 15 I noticed the bus ride home was very uncomfortable, more so than usual. Every time the bus hit a bump, I seemed to get this pain in my hind-end for some reason. This went on for a couple of weeks and my mom noticed that I was having a hard time walking and an even harder time sitting. To my embarassment she wanted to see why I was in so much pain,(she was an RN). As soon as she saw that I had this HUGE red Cyst on my tailbone, she explained to me what I had and it would more than likely have to be lanced to give me relief. This really scared me, but she said we would try some other things first. She had me soak in a tub of water, as hot as I could stand, and use hot packs. To try to draw it out. Needless to say, she ended up taking me to the emergency room, two days after she discovered my dilemma.

The trip to the hospital was something else, I ended up riding in the front seat on my knees, facing the rear window! At least I wasn't putting pressure on the cyst. At the hospital, the "policy" is that any new patient coming in has to SIT in a wheelchair, HA!HA!HA! NO WAY! My mom politely told the ER Nurse that I CAN'T sit. And naturally this went over like a lead balloon. In the end I walked into the hospital and the exam room.

The ER Dr. lanced the site and drained a "Nyquill" cup - full of puss and put "packing" into the site. This had to be change daily, along with soaking in warm water and shaving the site was recomended at that time. And in the near future I may want to have surgery.

I had slight discomfort once in awhile after that, but when I was 25 I went in and had surgery for the removal of the cyst and the "sack". This was when I found out that it was called "Jeeps Disease"; because ONLY MEN riding in jeeps got this! My thoughts were this Dr is very "crude"!

Three days after the surgery I was back in ER because I had such a stench - rotten and decade is the best to describe it. I had followed the procedures for post-op but I still developed an infection. The ER Dr wouldn't do anything but told me to see the Dr who did the surgery the next day. The ER Dr said I had a sever infection and the Dr would "probably" have to take out some stitches....

By the next day I was in sever pain, the same as when the cyst flared up. The attending Dr. (my Dr was on vacation!) examend me and said "every other stitch had to come out....They are too tight"; I started to cry and this Dr. said I had nothing to cry about, he had not touched me as yet! BOY WHAT AN ASS! Every other stitch was taken out, so now the wound site started to drain and it did heal, Thank GOD!

I have nerve damage on my tail bone, I can't do sit-ups as this rides on the bone. My kids would hit my butt, but instead of hitting one cheek they always got my tail bone. This sent me through the roof do to the nerve damage. BUT I would rather have this than the pain of the cyst!!!!!

15 years later, I can still remember the Dr's name, who took "every other stitch out...."!!!! I can't remember the Dr's name who did the actual surgery...

Jodie; Wisconsin

Date:

Tuesday, October 02, 2001

Story

Hello to all out there with this wonderful little (sometimes big) pain! I am a 28 year old female and have been living with this on and off for 12 years now.

Before I go any further into my story I must give a huge thank you to the creator of this site for bringing all of us a place to talk about this! I think we can all relate in some way of feeling embarassed when talking about this, or feeling a little strange because we have this nasty little thing!

I must admit the first time I had discovered this I felt as though I was dirty or something and very ashamed. I remember thinking why me and why there? I was 16 when I had my fist flare up and let me tell you as you all know the pain was just unbearable! I couldn't sit, lie, stand, anything without being in such pain. I would cry and cry it felt as though I was going to die. The pain just shot through my entire body. It was truely horrible! I finally went to the doctor and discovered for the first time what I had. My doctor gave me a shot to numb the area and then lanced the cyst. I felt nothing but a huge relief! All I could say over and over was thank you thank you thank you! I must say I was horrified from the smell and even more embarassed when the nurse had to open the window to air out the room because of it. I assured the doctor that I bathed daily and was not a dirty person. My doctor laughed and said that is not what caused this. I had had an ingrown hair. He sent me on my way with instructions to take warm sitz baths and take anitbiotics for 10 days. It was all fine after that!

Two years later it wasn't fine anymore! I had slipped and fell in the winter of 92' and all I rembember is the pain that followed. I thought for sure I had bruised my tailbone but then a few days later the lovely little bump was back and getting bigger! The skin was really red and warm but this time when it came about you could actually see a scar from the first lancing. It hurt just as bad as the first time and it was back to the doctor after taking all the pain I could take and time for another lancing more sitz baths and even more antibiotics! I was on my way and feeling great once again!

That time it only lasted for about 8 months and it was back again! This time it broke open on it's own with a little help from my new best friend (the heating pad)! This one I must admit wasn't as bad as the first two and I didn't go back to the doctor and let it drain for a couple of days and it just healed up. Once again I was all better!

Finally in the fall of 94' it came back full force and the pain sent me to the hospital in tears lying in the back of our car. My (now husband)driving like crazy with me crying hystericaly from the pain. I unfortunately got some moron in the hospital with no sympathy I guess and sent me home in pain saying he couldn't lance it and told me to take a warm sitz bath and apply heat till I could see my doctor in the morning. I wanted nothing but to inflict pain on that man. I cried so hard on the way home and couldn't sleep that night and pruned myself in the warm bath to try and give it some comfort during the wait till the next morning. Luckily I lived right next door to the doctor's office and somehow walked there the very next morning in tears. My doctor was on vacation and I had to see the other doctor in the office. He lanced the cyst open and drained so much puss out I could feel it just running all over me. It was so hot it felt like hot water running down my backside. This was by far the worst one yet! He sent me home along with more antibiotics. He also warned me that if it came back that I really needed to consider having surgery! Well now the fun begins! I go home feeling much much better at this point and run my warm sitz bath but feeling very strange when I sat down in the water. I reached back to touch the spot and felt like a string. I rubbed it and it hurt so bad. I could feel something hanging there and I pulled and pulled and pulled and pulled out all this bloody gauze! I didn't know he had packed it. I wasn't told to come back. I wasn't told I had been packed. I was really upset over this but did nothing but what I had done every other time. Take baths, take the medication and go on with life.

Now it is spring of 2001 and I notice a small red bump in the same wonderful area but this time it's very different! It isn't all that painful and instead of a brown/greenish goo draining from it it's more of just blood. Well it goes away and comes back goes away and comes back. Now September 2001 I can't take it anymore. It's getting very big but is growing out like a small round mass and in a slightly different location more of on the side then in the center and it's not under the skin it's growing out! I'm done with this. I go see my doctor here (relocated to Florida) and she cuts it open! All that came out was blood. She said it was very strange and hasn't seen one like that before and sends me to a specialtist. I have been on antibiotics for a week now and have seen the surgeon. He said it is growing this way because of all the scar tissue from it being lanced so many times and it's just growing out because it is being blocked from it's normal place. I just thank God this time it's not painful like all of the rest and I am finally making the right choice (I feel) and have the surgery. I think 12 years of suffering is enough and I will hopefully not have to deal with it anymore! I know that there is a chance that I will have to deal with it again but at least this time I know that there is a place I can come to and vent to many others who are going through the same thing!

I thank you all for your stories and will let you know how the surgery goes this November. Wish me luck as I wish all of you the same!

Date:

Monday, October 01, 2001

Story

I never realized how lucky I was until after I read other people's stories on this website. My case was nothing like the others on this site. I developed what I thought was a boil when I was 15 years old (I'm noW 18). I had never had a boil before so I thought that was what it was. Unlike most of the other people my cyst developed within the span of one week. Before that I never had a dimple or a lump in the area of any kind. Within one week the cyst had grown to about the size of an orange, was EXTREMEMLY painful, and was badly infected. I was in such unbearable pain that I very breifly passed out at one point, I have never felt such pain in my life. I went to the doctor where he immediatley diagnosed it as a pilonidal cyst and sent me to the E.R. He said that it would have been too painful for him to have done under local anesthetic in his office. I am very grateful that he kept my comfort in mind. I went to the ER they lanced in under general anesthetic. They made no mention of any hair found in it, but they said that the smell was horrible. They made two small incision's, one one each side of my butt crack, then packed it with gauze. They removed the gauze a week later and I have never had a problem with it since (3 years). My recovery was quick (about 1 1/2 weeks) with little pain. The post surgery pain was nothing compared to the pain I was experiencing pre-surgery. For me the worst part of the surgery was the 3 days of vomiting caused by the anesthetic. I feel so lucky that my case was so minor in comparison to the others. I never knew that it could cause such severe problems.

Date:

Sunday, September 30, 2001

Story

Pilonidal – the Danish way

I am very pleased about the Pilonidal Net – and will tell you my story.

I am a male, 51 years young.

“It” started slowly November 2000. Just pain and swollenness. April it became very painful within a few days. Got high fever. I could not reach my own doctor (we have dedicated doctors in Denmark). Went to ER. Examined by 3 doctors – until 10 in the evening. I was immediately booked for surgery the next morning. However, I spent the next 2 days at the hospital before surgery. In the meantime the cyst stared to fluid.

I had an operation and was in anaesthesia for 45 minutes, and could leave the hospital the same day. With 4 heavy-duty stitches. These should be removed after 12 days. During this period I had pain and the fewer increased. When my doctor removed the stitches, I was immediately sent back the Hospital. I had inflammation in the wound, which were 3.5 cm long and 2.5 cm deep.

The next 3 days I visited the Hospital for cleaning. They decided to let the wound stay open instead of a second stitching.

The next 6 weeks was an experience.

I visited the Hospital once a week. Every single day during this period a nurse visited me at home. I showered the wound. The nurse then cleaned the wound with salt water. The wound was stuffed with a soft material contacting seaweed (Acuaquel - but other trades have the same effect) to keep the wound open and do drain it. During this period I showered 3 times a day – without removing the stuff from the wound.

Actually the wound closed nicely the next day after my last “home care” visit.

After a week the skin cracked and I got some minor bleeding. My doctor told me to clean the wound 3 times a day with 0.2 % Chrolhexidine. This stuff is killing bacteria – with no pain.

After 3 weeks of minor bleeding I felt cured.

Today, 5 and a half-month after the surgery I am still soar. And I am num around the scar. But no pain.

At the hospital I was told that the cysts would return. My own doctor, however, told me that my cut was very deep (the scar is 6 cm long). Therefore I should not expect to get it again.

One of “my” nurses. 25 years, has been under the knife once. Scheduled for another operation. So this is not a male decease.

I was told an interesting story: In the bottom we have channels – or hollows. When we sit down a vacuum is built up. Therefore, bacteria are sucked in under the skin. I was told that these channels or hollows can be up to 6 cm long, and that they are removed during surgery.

For your information: My treatment was free of charge. (Danish taxes, however, are among the highest is the world.)

I you have any questions or comments. Please feel free to contact me directly.

Bjorn Johannesen Denmark

Date:

Monday, September 24, 2001

Story

I AM A 32 YEAR OLD MALE & HAVE LIVED WITH PILONIDAL SINCE MY SURGERY IN APRIL OF 1989. I BOUGHT PREP H, FOLDED TISSUE, THEN FOLDED GAUZE PADS 3X5 BETWEEN MY CRACK SO THE DRAINAGE WOULD NOT GO THRU MY CLOTHES. AT THIS POINT, I WAS SCARED TO DEATH, AND NEW THAT SOMETHING HAD TO BE DONE. THE PAIN GOT TO BE UNBEARABLE, AND MY LOWER BACK WAS HURTING FROM THE POSTURE I WAS HAVING TO ASSUME WHEN SITTING AND DRIVING. FINALLY, AFTER A GOLF BALL SIZED CYST AND 3 SINUSES COMPLETELY DRAINED AND SCRAPED, I WAS RID OF IT, BUT HAD A 2 YEAR HEALING PERIOD BEFORE THE HOLE WAS COMPLETELY CLOSED, USING SILVER NITRATE STICKS,VISITS TO THE DOCTOR EVERY 2 WEEKS DURING THIS TIME, AND GOOD SUPPLY OF NAIR AND RUBBER GLOVES. I GOT OFF THE NAIR ONCE A MONTH AND NIGHTLY SOAKING, AND IT CAME BACK TO A LESSER DEGREE, BUT STILL THE DRAINAGE & SOME BLEEDING, & YES THE UNCOMFORTABLE POSTURE. I NOW HAVE IT AGAIN & AM GOING BACK TO THE DOCTOR TO GET IT CHECKED OUT. IF SURGERY IS NOT REQUIRED AGAIN, I AM GOING TO KEEP THE AREA NAIRED AND HAIR FREE FOR LIFE. I AM FINALLY REALIZING THIS IS THE ONLY WAY & NOT TO SKIP A MONTH WITH HAIR REMOVAL.

Date:

Sunday, September 23, 2001

Story

I am a 36 year old male living in New Zealand. I first discovered a redish sore area on my buttock nearly 2 1/2 years ago. My first thought was it was a boil and would go away. When it didn't I took a visit to m y local doctor, who dignosed a growth and cut our about 1 inch of tissue and sewed me back up. six months later I was back only to be sent to a specialist, who immediatly diagnosed it as a pilonidal sinus and recommended surgery to clear the track.

I was left withan open wound, described as the "grand caynon" by my districk nurse who dressed my would every day for over two months.

One year later ITS BACK. I will keep you posted.

Date:

Sunday, September 23, 2001

Story

Hi my name is Rich and I am a 32yo male. Just 6 weeks into my senior year of high school in October of 1986 I went to the bathroom one night and after a particularlly painful bowel movement I noticed blood on the toilet paper. I waited 2 more weeks to wait to tell my parent about the blood I would see in my underwear and the toilet paper(not to mention the trouble had walking). My mother immediately took me to the doctor and within minutes he knew what the problem was and proceeded to clean my buttocks area and checked me out. He then bought my mother in and informed her I need surgery because the Pilonidal Cysts were infected and had ruptured causing the bleeding and the pain which affected my walking.

On my 18th birthday(what a wonderful present) I had my cysts removed, and we learned that I had 3 just centimeters from my spinal cord. I was very luckily to have had mine removed or else I might have lost the ability to walk. It took me almost 4 months to recover and missed most of my senior year but I graduated with my class on time.

Date:

Sunday, September 16, 2001

Story

Hello all. My name is Greg (29 y/o male) I'm in the United States Navy. Currently I am on a six month Mediterranean cruise. It all started about a year ago, I felt a sharp pain on my tail bone while getting out of bed. I went to the bathroom and found a greenish-yellow liquid in my underwear and a lump near my tail bone. I figured I must have bumped my tail bone playing football or maybe even slept wrong. Ater a day or two the pain subsided and the lump went away. Needless to say, here I am in the middle of the Mediterranean Sea with a large lump on my tail bone and pain that can not be desribed with words. I immediately went down to medical to find out what this could be. The doc calmly explained that he could fix this problem easily. He took me into the ward where he quickly lanced what I know now as my Pilonidal cyst. After about 5 minutes and the doc was able to pry my fingers off of the examination table, that part was over. He packed the small incision for about a week ( no fun at all ). However, after the first week, I decided to go ahead and have the surgery to get rid of this thing once and for all. The surgery was totally painless. I have now been cyst free for about 4 days. I do however have a hole in my backside about the size of a small orange. Sitting gets kind of tricky, unfortunately I can't just call in sick. However, the doc seems to think I'll be good as new in about 4 more weeks. I sure hope so, this packing and draining thing, while not as bad as putting up with the pain of having a cyst, can get pretty irritating. I do however advise getting the surgery if you have a pilonidal cyst. Since my surgery, the pain has been very minimal. I feel it is woth it. For all of you sitting slightly to the left or right, right now reading this, you really know what pain is...

Date:

Monday, September 10, 2001

Story

I had a pilonidal abcess back in January 2001. 3 days of severe illness including fever and pain. A visit to my doctor and 12 hours later in surgery the abcess was gone and my temperature back to 37. I had no idea what was happening to me. The pain nearly finished me off and I had no clue to what was the cause. I am an intensive care nurse with 5 years experience. God help those who knew less than me. I was terrified with no rational explanation for my illness. I must have been away when we did pilonidal at college! I have been back to theatre in May of this year to excise some further tissue that may have caused problems later on. I am still off work to this day as my surgical wound has not yet healed. I am going to theatre again in approx 12 hours from now to be surgically stitched back up. I am thrilled. I am pleased that I have found your site. I do feel quite alone in this as it is an illness which is easily mocked, but not at all understood. It is a bit of a "joke" illness. People dont ask you how you are, they instead come out with the "how's your arse". I fear that they might tell a different story should they have to see a nurse every day to have their wound packed. To get into a strict routine of showering once a day so not to disturb the dressing that has been placed in the morning, and worse of all, to be off so long that it is a bit of a "joke" considering it is one small hair. After all, people who have heart transplants get back to work quicker than this. Hopefully, I will be back at work soon, but I will never forget what it feels like to be so ill and down as a result of a small meandering hair. Keep up the good work.

Date:

Saturday, September 08, 2001

Story

Hi, it's Alison again (hopefully the last time I will be posting). I had my surgery to remove the cyst and sinus on Thursday the 6th. I was prepared for lots of pain and I must say that it doesn't hurt very much at all. Having it removed was less complicated/painful then the lancing. I am not able to sit upright yet but I am not in constant pain. The only thing that is bugging me right now are the antibiotics. I am on Flagyl and Cipro and they are making me sick to my stomach. Other then that I am fine. My surgeon stitched up the wound which also helps, I don't have to deal with packing this time around. The surgery only took about an hour. This hasn't been the best experience of my life but it could have been a lot worse. My advice to those that are thinking about surgery is find a surgeon you can trust and who you can feel comfortable with. Don't kid yourself, this surgery is not easy emotionally. It is very important to feel comfortable with your surgeon. That and just take it easy afterwards.

Date:

Friday, August 31, 2001

Story

Hi! I just wanted to add my story. The first time I ever had a flare up was about 13 years old or so. I was sitting on the bus with my knees propped up on the seat in front of me. Sitting like that was fine - it was the getting up and the release of the pressure that almost brought me to my knees. I just figured I'd strained my tailbone. Later I went to the bathroom and saw some drainage and blood but I knew it wasn't time for my period. I felt my tailbone and felt a swelling and some more drainage. Well, I didn't have the greatest communication with my parents and they pretty much blew off my complaints about it. So I just put up with it and did one-sided sit ups in gym class. Got married, DH learned how to express the "bump" as I called it. I just thought it was a weirdly placed blackhead. Finally my mom listened to what I was telling her and she told me that my grandmother and uncle both had this. My uncle had surgery late in life - the tunneling had almost gotten to his intestine. My grandmother's burst on it's own at one point and never had a reoccurance. I talked to the college dr. about it and he told me what it was and that I could have it lanced. Well that sounded worse than just having DH express it for me every couple of months so I didn't do it. Surgery was never mentioned. About a year and half ago, it flared up horribly (oh, it never flared up while I was pregnant or nursing my 2 girls - that was odd.) and sent me to the dr. She sent me to a general practitioner and he said "surgery time". I was told to expect a one inch incision, end up with a 3 inch incision and stitches. Sent home with tape across the butt. The tape ended up hurting worse than the rest of changing the bandage so a friend suggested getting a girdle to hold the bandage in place instead of tape and that helped a lot. Recovery time was about 2 weeks till I could sit well and drive. I used Advil for discomfort after the first couple of days - I used something stronger (can't remmeber what) when I first came home. I hope that it stays away but if it comes back, I will have the surgery again. Just wanted to share. Sonja

Date:

Friday, August 31, 2001

Story

Hi, my name is Allison (two ls), and I just found this excellent site. I'm in my "mid to late 30s", and I've been dealing with this pain in the butt condition since I was in my mid-teens. The first time I had it, I was just a kid, and it scared and embarrassed me so much I didn't tell anyone until I was so sick and in so much pain I was delirious. For months the pediatrician kept lancing it and cleaning it out. Finally we gave up on that and talked to a surgeon. Since then I've had the surgery four times. It takes care of things for four to five years, then the cyst comes back. They're always very large and deep, and the incision typically takes three to four months of daily cleaning and packing to heal. Well guess how long it's been since my last surgery? Oh, about four to five years. And I'm starting to worry that it's back. So far just discomfort, nothing definite. And hopefully I'm just being paranoid. But the thought of going through this again makes me want to do myself in. I know some people get upset by some of the downer stories, but I can't think of anything good to say about my experience, except that I've gotten to know some very nice surgeons and nurses. Finding this site makes me feel better; it was especially comforting to hear about the advances that have been made in packing materials. If I do need surgery again, I think it will go so much better just because of what I've learned from this site. Keep up the good work!

Date:

Thursday, August 30, 2001

Story

Finally, an Oasis on the internet for those of us connected by the familiar experiences with butt pain.

I'm a 22 year old male, about to be married in a month. I decided that, for the honeymoon (especially for the plane trips and beaches) I would try to get mine taken care of.

I do feel I am luckier than most people I have read on this page. Mine isn't very large, about a quarter inch by a half inch. And, from what my doctor told me today, it wasn't very deep.

I went to the Dr. today to get rid of this damn thing once and for all ... I noticed it first at the age of about 13 I guess. Only once before have I gone to the Dr. about it - and thats when I found out it was a PC. The treatment I was told? Oral Antibiotics. Unfortunately it didn't work.

I finally went into my Dr. to have it removed, or so I thought. Apparently all I got was a lancing ... I think. I'm told that the cyst itself was cut about .25 of an inch and drained. It was packed with stuff (lucky me, the Local Anesthesia wore off in the middle), and it needs to be changed tomorrow. Yippee.

So, now I'm sitting here with the Age Old Tape across the butt with a Bunny Tail. I'm also on Codeine for the pain, which, compared to what I've read on this page, is small. I rarely have pain, but I always have draining ...

I guess I'll find out tomorrow about what to do ... I don't want to keep repacking it if its going to hurt like it did today ...

Date:

Saturday, August 18, 2001

Story

I am a 31 year old female, and had surgery to remove my cyst and sinuses on July 19th. First, I'd like to say that I had read many things on this site before my surgery, and got very nervous by what I read. Believe me, not all stories are gruesome and horrible.

My best advice is to find a surgeon who you trust, and who will take the time to talk with you. I think a lot of the horror stories come from not knowing what to expect afterward. I had my cyst lanced in 1995-by the same surgeon who did my surgery last month. Prior to lancing, it was the most painful thing I had ever experienced. After it was lanced, I didn't have a recurrence until this year-and it hurt!

My cyst spread and tunneled quickly once it recurred, and during my consultation, the surgeon prepared me for the fact that it was going to be a deep incision. My best advice is to ask questions--especially about aftercare and what to expect when you come home from the hospital. I am the world's biggest chicken of hospitals, and that was the easy part. You sleep through the whole thing. When you go to the surgeon the day after surgery to be checked, make sure that you bring whoever is going to be the one changing your bandages. My nurse and surgeon showed her exactly what to do.

There can be some discomfort when the packing is taken out because it can stick to the incision. Prior to your surgery, I can't say how much it helps to purchase and install a hand held shower head. I would get up every morning and take all the outside bandages off, then take the shower head down and just hold it right where the packing was for about 5 minutes. It loosens it so it practically falls out. This eliminated any discomfort. I HIGHLY recommend doing this. It was the best thing I could have done. Don't go through anymore stress and discomfort than you have to-get one! Then, the person who helped me would repack and bandage. I do not recommend taking baths to loosen bandages. Because it's an open wound, I was worried about trying to sit having all that drainage and gunk with me in a tub. You also won't want to even think about sitting on a hard surface!

I did NOT look at my wound after surgery for at least 2 weeks. I had someone packing it, so I didn't want to see it. She had warned me that it was really bad and begged me NOT to look at it. She said it would cause me undue stress, because it's ugly to look at after surgery. I did not even attempt to look at it until after 2 weeks when I could pack it myself, and the person who bandaged for me for the first 2 weeks said that she cannot believe that it looks as good as it does now from when I first came home. So for those of you who do peek-it won't stay like that! I am amazed at how the body heals itself.

For my wound being as deep and large as it was, I can honestly say that I had no pain--some discomfort when I tried to get into a comfortable position--laying on your side and stomach takes its toll after a while. I was prescribed pain medication after surgery and never took any of it. The sore throat I got from the breathing tube during surgery was more of a bother to me than the wound on my butt. My recovery room nurse called me 4 days after surgery to check on me. She could not believe that I wasn't in any pain. I was lucky-and thankful--but prepared to take those pills if I needed to!

The first 2 weeks are the roughest. You're bored, comfortable positions are hard to find, you're stuck not being able to drive, and you get really tired of having tape across your butt. (Use paper tape-it comes off a lot easier.) After a week, we got the bandages down to just the packing, 2 pieces of gauze folded in half and put over the packing, and then I used a thin maxi pad and taped that over the top. After 2 weeks, I was down to just the packing, and then the thin maxipad pressed into my underwear--no tape at all. I figure I'll be doing that for another 4 weeks.

It's been 4 weeks since my surgery, and it's really become not a big deal. I can't wait for the day when I don't have to do this anymore, but it's just become part of the daily routine, like brushing your teeth.

I have read where many people keep going through the cycle of lancing every time it flares up and starts to drain. That's such a hassle. Should I have to ever do this again-and I sincerely hope I won't have to--I would have surgery again. I wouldn't think twice about it. I was in the hospital at 8:00 in the morning, and was home by 12:30. I feel SO much better not having all that pain,drainage, and infection in my body. I'm glad I went through with it. Take care of yourself and have it done.

Date:

Friday, August 17, 2001

Story

Hi, my name is Jennifer and I am a 29 year old caucasian female. I first had a symptom of Pilonidal Disease in April of 2001. I originally thought that I had bruised my tailbone somehow. I was in extreme pain, but did not go to the doctor because I wanted to give it time to heal on its own. I got my boyfriend to look at the site to see if he could see anything unusual, but he just said that it was red and looked a little irritated. I (as painful as it was) ended up going on a trip to Myrtle Beach, SC, with my boyfriend. After arriving 4.5 hours later, I went to the restroom and noticed some drainage. It was cloudy with a small trace of blood and smelled extremely bad. I was not sure what I had exactly, but was sure that my original self-diagnosis was wrong. I was not too worried about it because it felt so much better after it drained. I then again self-diagnosed myself as having just an infected ingrown hair. I began putting antibacterial ointment on the site and allowed it to drain a little for a couple more days.

I did not have any more flare ups, but every now and then would notice a bump form and minimal drainage would occur. Again, I would just put the ointment on the site. It was not until June 2001 that I went for a regular check-up at my OBGYN doctor's office. I informed him of my symptoms that had occurred 2 months earlier. He looked at the site and noticed a small hole (the sinus) and told me that I had a pilonidal cyst. I had never heard of such a thing. He then referred me to a general surgeon. I went to the general surgeon's office on July 16 and they scheduled my surgery for July 24th. I was under the impression that it was going to be done in his office under a local anesthetic and would be no big deal. WRONG!!! It was to be done at Outpatient Surgery at the hospital under general anesthesia. He told me that he believed that we got it in the early stages and I would only need to take a week off from work.

SURGERY DAY...I arrived at the hospital 1.5 hours before the surgery. I checked in, they called me back, and I got undressed and into a hospital gown. They started observing my vital signs and the anesthesiologist explained what her part was in the surgery. They gave me something to calm my nerves, something to dry me up, and an antibiotic. I was then wheeled into the operating room where the nurse anethesist explained what he was going to do. I am pleased to inform you that I do not remember anything from that point on until the nurse in recovery awakened me because my doctor wanted to talk to me. As groggy as I was, I could tell how disappointed he was to have to tell me that he had to take out more tissue than he had originally thought and hoped. My mother and boyfriend had even told me that he was very upset to have to do that to me. I guess because he has a heart and knew what hell I was going to have to go through during my healing process. What happens during surgery is...the doctor makes the incision and then injects a blue die into the cyst. The blue die then travels throughout the cyst and through any sinuses that it has formed. The doctor then has to remove any tissue that the blue die has traveled through. Unfortunately for me it was a lot of tissue. He did leave the wound open so it could heal from the inside out. I truly did not know what I was in for. When I left the hospital, I was numb so I did not have any pain. I did have a huge bandage over the site. I went home and was to return to the doctor's office the next morning so he could show my mother and my boyfriend how to clean, pack, and dress the wound. My boyfriend has medical background and my mother is a nurse. The doctor took the packing out and my mother and my boyfriend both said, "WOW!". I immediately thought that it must be really bad for them to be that amazed. They told me that it was to the bone (THEY COULD ACTUALLY SEE MY TAILBONE!) and it was so big that you could fit a baseball in it. It was beyond my understanding how something that big and gruesome could just be left open.

The next day my hell began. The first time I saw it, I could not believe it. It looked fake. It looked like a fake wound that you would see in a horror movie. It was huge! Please do not misunderstand me...the pain is off and on...changing the dressings is not as bad as I thought...sitting is not an option...my hips and lower back hurt from lying on my sides and my stomach...driving is not an option. My day begins with a shower and my boyfriend cleans it out with hydrogen peroxide and then packs it and redresses it. It does drain a lot. Sometimes it contains a lot of blood and sometimes not. The biggest problem that I have faced is what it has done to me emotionally and psycholigically. Being stuck inside has about driven me mad. The most excitement I get is walking to mailbox and back. Although I have started venturing out a little more, but only if I have a ride so I can lay in the backseat. It has not been any fun.

Where I stand now...It has been almost 4 weeks and I am only half way healed. I am still out on short-term disability from work and am so ready to get back to work. I have a severe case of "Cabin Fever". I am getting better and the pain still comes and goes. I am able to sit for VERY short periods of time, but am not able to drive yet. The doctor says that I am healing beautifully and should be completely healed in another 4 weeks. It has been very difficult, but I do recommend the surgery. I cannot fathom the thought of having those flare ups for the rest of my life when this surgery could more than likely heal me for good. I am extremely fortunate with the company that I work for. I am in sales and do a lot of driving; therefore, my job depends on me being able to drive. I had accrued 27 days of disability and will probably use all of it. My boss has been very understanding and very wonderful to me. He did have a pilonidal cyst himself years ago; therefore, how could he not understand? He is a wonderful boss and I do believe he would have understood regardless.

This is not a pleasant experience, but I do recommend it. Some words of wisdom...You must keep a sense of humor through this whole ordeal or you will go crazy...Always remember, as with any tough situation, THIS TOO SHALL PASS!!!

Date:

Wednesday, August 15, 2001

Story

I am the 57 year old that wrote in on Feb. 7, 2001 regarding soaks in hot Epsom salt water. This may not be for everyone, but it still worked and still works for me. I've even started riding a bicycle with no problems from the bike seat preasure. Presently I resort to the soak about once a month. There has been no pain and the discharge is minimal. Typically, I have no symptoms at all.

Date:

Friday, August 10, 2001

Story

I first had surgery on my cyst when I was 16. A few weeks before surgery my family doctor lanced it, and it was painless (local anesthetic.) After that and before the surgery, I had no pain, just drainage. The surgery went well, but afterward it was painful, until I figured out to drain the wound multiple times a day. That took pressure off it, and it healed up fine after that. Fast forward 3 years, I'm now 19, and getting the symptoms again. If it comes to surgery, I will do it again, it is REALLY not that unpleasant, if you take care of your wound after surgery and are sure to drain it, it should heal up just fine. Don't worry about the pain people mention about surgery, get it taken care of. It's worth it.

Date:

Monday, August 06, 2001

Story

Easy and Painless!!

I had surgery one week ago (Monday, July 30th, 2001) for a pilonidal cyst. I have two incisions - the first is two inches long along the crease of my tailbone / buttocks, and the second is one inch long slightly left of my tailbone on my left butt cheek. Today, one week later, I am at work (drove myself here), am nearly completely healed, and have regained most of my mobility and independence. I can work out (lightly - upper body - haven't tried running yet), and can sit normally. The incisions were closed with stitches, and I required no "packing" or special baths, etc.

My advice to anyone reading this is to not freak out after reading some of the stories on this site! While this website is very helpful and informative, I have to admit that finding it and reading some of these stories only days before my scheduled surgery had me scared s**tless. Seven inch long by three inch wide by two inch deep incisions that don't heal, excrete strange substances, bleed, get infected, need to be "packed", and ultimately require additional surgery was enough to cause me to rush out and get a second opinion on the Friday before my surgery (scheduled for the following Monday).

The Colon and Rectal Specialist I visited put my mind at ease, and validated what my primary surgeon had told me about my condition and the recommended type of surgery. He also gave me a better indication of the seriousness of my condition based on the size of the cyst (between small to medium) and the quickness with which I saw my physician after I noticed it (three to four months).

Admittedly, my cyst never did hurt (it was draining daily on its own) and it only caused me slight embarassment and soiled underwear. My advice to anyone experiencing this condition is to visit your physician immediately. Follow his or her recommended course of action, and if surgery is ultimately recommended, get a second opinion. Make sure your selected surgeon has performed this type of operation in the past. I credit my lack of pain during and after surgery, and my rapid recovery, to the skill of my surgeon. Also be sure to get plenty of rest after the surgery, and take it as easy as you can for the first week.

I can't predict what the future holds, but for now, I am cyst free!

Good luck!