Personal Stores Archive #13

Personal Stores Archive #13

Stories from Feb 1, 2003 to March 31, 2003

Date:: March 31, 2003

Story

Good Mornining everyone. I am the mother of from what it looks like the youngest female to have this disease. My daughter is 13 and had the surgery the first week in Nov '02. My story starts like this. A few years ago, my daughter fell while roller skating and guest where it constantly hurts - you guessed it - the tailbone. Well, I also did not know that this website existed until today (March 31, '03). I found out that that fall could have possibly caused this cyst. I knew that she complained that her tailbone would still hurt every once in a while, but thought nothing of it. She is not a very active girl but is a bookworm & smart in her studies. October of 2002 she really started complaining of the pain that she was having at the beginning of the week -by weeks end she could not walk, sit or lay down. I took her to the doctor the following Monday & that's when we discovered that she had the cyst. They relieved the pressure and set her up for surgery. They also informed me of the chances of it coming back. Well, she had the surgery Nov 9th, 2002 and after her follow-up was told that she could go back to school the first week in Dec. Well, she did and guess what happened? The wound completely opened and she has been out of school since that week in December 2002. Because the doctor sent her back to school too early(as I found out on this site that the wound is not supposed to be stitched so that I can heal from the inside out) she has only been to school since October 2002 a total of 1 week and two days. She was seen 2 weeks ago and the doctor told her that there was no reason why she couldn't go back to school. I said, "HELLO!!! If she can't sit at home then exactly how is she going to sit at school all day!!!!" But to make sure that she wasn't faking, I sent her to school and as I knew the administrators said that she was visibly in pain after those two days. So she is home everyday again. I am very, very grateful to the school system because they have a Homebound Program in place for students such as my daughter. Because of them, she has a tutor to come out twice a week. I am so proud of her because with all the pain that she has been in - she has not let this stop her from achieving the grades that she is used to. (She is gifted & has made the high honor roll each semester) I think this is more stressful for me because I have to fight with the doctor to approve her for Homebound Program each month. April 9th will be 5 months out of school for her and today I have to get it renewed again because I looked at her wound and the bottom of the wound is slowwwwwlyyyy healing, so when I read that it took one person 9 months for complete healing - I felt some type of relief as a mother. I had the guilt thing going on because I doubted if she was doing this on purpose or is the pain for real. It's hard to stand for something when you are not completely sure of the situation and it's hard for the family to understand. Thank you for making this website so that parents as well may feel some sort of relief for their child or children. Wish Us Luck!!! Will keep you posted. V

Date:: March 31, 2003

Story

Hello all! I am a 25 year old woman from New York, who just had surgery to remove my pilonidal sinus on Friday morning. After painful and embarassing flare ups in December, January and February, my doctor suggested surgery. Although I was very very scared, I have an excellent doctor who explained the procedure to me, the process, what he was going to be doing, and the time it takes to heal. I decided to have the surgery, because I felt it was worth going through to never have to worry about a flare up again at the most inopportune times, like a vacation, or if I am somewhere that my doctor isn't readily accessible. The surgery was virtually painless, after the anesthesia got started, I felt nothing, and really remember nothing. After waking up the doctor came to see me again, explained what he did, how to treat myself and keep the wound clean and dry at home, and to call his office for a follow up to see how I am healing. The anesthesia had me a little woozy for a few days, and the painkillers make me very drowsy, but sleeping is a good thing, especially after an ordeal like surgery. I know that there is no way to tell if the sinus has been completely removed, but my doctor seems confident that it has, and I am happy for that. We'll just have to wait and see. In the meantime I am out of work for a week because sitting will be virtually impossible for long periods of time at work, so for now I am just enjoying my time off, letting my body heal, and feeling fine! Anyone with apprehensions about the surgery... DO IT!!! It's worth it! Just make sure you have a good doctor!

Date:: March 28, 2003

Story

Hi my name is andrew Im 19 and I found out I had a pilonidal cyst only 3 months ago. I knew of it for the past 3 years, but didnt tell anyone (which i regret). I finally told my mom and I went to my doctor. He had me go to specialist. I was booked for a extraction of the cyst 3/27/03 (today). The surguy was a sucess. the only thing im gonna hate most of all the nurse who comes tomorrow has to show my mom how to change the dressing. I tried to keep this as short as possible and thank you to the person who created this site it has helped so much before and after the surgury.

Date:: March 27, 2003

Story

Hi everyone -- I just wanted to add a success story to the board because I remember bursting into tears when I first saw all the horror stories on this site! I'm a 23 year old female and I've had a pilonidal cyst for many years, although it only got very bad about four or five times. The last time it happened I was stranded in Canada for unrelated reasons and had to try to negotiate care in French and in an unfamiliar city, all while other disastrous events were going on. This pushed me to make the decision to have the surgery and try to take care of it once and for all. I took a month long medical leave from work, applied for Temporary Disability Insurance, and went home so that my parents could help me. I was expecting a long recovery period. I had my surgery three days ago and it went beautifully. I had prepared myself for lots of pain, but I haven't had to take any pain pills at all. I do toss and turn at night because I can't yet lay directly on my back for long periods, but for the most part I move around pretty comfortably. I had general anesthesia, so I don't remember a thing after the initial IV went in. I woke up in a recovery room, slept a bit, and then went home. The next day I was up and walking around, I even cooked dinner for my parents that night! If you are contemplating surgery...take heart! I think it is really worth it to permanently take care of this debilitating condition, and plenty of people have the surgery without a problem. Make sure that you go to a reputable doctor -- ask around! One other thing that I want to add...whether or not you are going to have the surgery, investing in a coccyx cushion may help relieve some pain. A few people suggested to me that I get a doughnut -- these are NOT designed for easing pressure on a pilonidal cyst, for me it made it worse! Instead, do an internet search to find a coccyx cushion -- they will relieve some of your pain when sitting. Best of luck to all of you!

Date:: March 24, 2003

Story

I want to start off as everyone else, by saying thank you to the webmaster for putting this page together. I have gotten more info in the last few minutes than in the past year. Now to my story: I'm not sure exactly what started it all, but I think it was when I sat down to hard on my couch one day about a year ago and hit my tail bone on the piece of wood that goes across the back of the frame. I was in pain for a few days but thought nothing of it then a few weeks later I started noticing some minor pain in the area, when I'd sit a certain way or lean on a kitchen counter etc... but I thought it was just a bruise on my tailbone and that it would go away on it's own(HAHAHA)so another week went by and instead of going away the problem got worse, it hurt to sit down at all, it hurt to stand up, it hurt to lie down in any position except on my chest, I was just generally in a lot of pain. So I decided I was going to go see my GP about it, The day came and as I was getting ready to go to the doctors office, it burst. Now I know we're all aquainted with that gross feeling of liquid dripping down between the cheeks(EEEEEWW!!!!) I went and checked my underwear to see what was going on and almost passed out. It was a bloody(literally) mess!!! At that point my wonderful wife came home to give me a ride to the doctor, because at that point I was in no condition to drive. I told her that instead of going to the doctors we were going to the emergency room(yes I freaked with all the blood). When we got to the ER I didn't quite know how to explain the damage to the triage nurse and she ended up sending me to the urgent care facility also located in the hospital.Once I saw the doctor and showed him the area, he immediately knew what it was. He told me it was a Pilonidal Cyst and that it was something I had since I was born, and that it would need to be drained. That's all the info I got before they had me in an OR and out like a light, never a more embarrasing memory will i have than the last thing I remember before waking up in recovery....that of them taping my cheeks apart. However once I came to there was no more pain (dylodid is good) and I was all nicely packed and ready to go home. I had no major pain at all following the lancing, had a small amount the next day when my wife (remember the wonderful one?) had to remove the packing from inside the wound and of course the surgical (hair removal) tape. I went back for post op and the doc(different from the one I saw in the UC) said that I was healing fine and if this recurred that Surgery would be necessary to remove the cyst. Well after that all was fine and dandy, up until 2 weeks ago when I sat down the same wrong way on the couch(perhaps I should look into a new couch) and you bet your bippy I'm all swollen and painful again. So I'm going to go see my GP tomorrow armed with the new info I've picked up here and ask her all the questions I should have asked a year ago. I'll let you all know how it turns out for me. Thanx for listening Elric R. Morningstar

Date:: March 19, 2003

Story

I got this condition at the age of 38, much to the amazement of Doctors, as this is considered a young persons disease. Anyway my saving grace was and is GSE (Grapefruit Seed Extract). After days of suffering in excruciating pain I found my old supply of this stuff and put it into the bath, 30 minutes later the cyst burst and you know the gory details about that. So I continued to bathe using GSE and the whole thing cleared up in 2 days. It has been 14 months since I have had a flare up and when I feel the slightest pain there, I just put GSE in my bath and the pain disappears!! GSE is all natural and is used for many things but it is a very powerful germ killer, I have used it to cure sore throats and for colds too!! My wife even used it to cure a yeast infection. Awesome stuff. You can get it from Whole Foods Market or from http://www.nutribiotic.com/GSELiquid.htm Your more than welcome to contact me if you have questions or concerns. Regards David

Date:: March 19, 2003

Story

March 19, 2003 Hi there. I am very thankful that someone took the time to develop this site. I have been consulting this resource for the past year in hopes that I might gain some clarity regarding this strange condition. Well, last Monday I was "put under" via general anasthesia early in the morning to get this thing removed, and I am currently taking Percocet for the pain I am in. Sitting at this desk to write to all of you is certainly a challenge, but I owe it to you to share my story - especially since my particular situation is relatively positive (hope I didn't just lose half my readers. The trend seems to be to focus on the horror stories). Sometime during college back in the early 90's, I was sitting on the hard gym floor tying my sneakers when I noticed a strange, light throbbing sensation right on my tailbone. Nothing became of it then, and for the next couple of years I only experienced this minor irritation -I'd say....maybe a few times throughout each year. Once I got married, the bump became larger, and the flare-ups more frequent. Every few months, I would find myself in a little bit of pain but noticed that I had a bad attitude bordering on depressed. Sometimes I'd just feel nauseous. I eventually realized there was a definite connection between these flare-ups and my feelings of "malaise." My wife came home from work one night and told me that she thought she might have found out what I was suffering from. Keep in mind, at this point my cyst had not ever drained. It basically would run its course within my body, the infection eventually subsiding on its own. The nurse my wife spoke to mentioned pilonidal disease, and said that some people are affected emotionally when an infection is occurring in the body. I was definitely one of these people, and it makes a great deal of sense now why I felt so bad during these episodes. There was just nowhere for the infection to go. That year, I decided to see a plastic surgeon about my problem and worked it out so that he would remove it for me and let me pay cash for the procedure. I was trying to avoid a documented surgical event so that my insurance company would not flag me for a "pre-existing" condition. Besides, I thought it was no big deal and could be dealt with easily. THIS WAS A BIG MISTAKE. Within the next eight months, the cyst recurred. Each episode was more severe, more painful, and much more frequent. I don't even think the surgeon had ever seen this condition before. Eventualy, the flare-ups began to occur about every couple of months and in the past year my wife has actually had to lance the area to give me some relief. The last infection I had, the cyst ran its course in an amazing 48 hr period and burst on its own. The sight in my underwear was disgusting, but the relief was immediate. I realized it was time to get something done, and I had done all the necessary homework in terms of knowing this condition and how to find the right person for the job. I was scared as anyone would be going into surgery, but I was more concerned about general anasthesia than anything else. I must say that after what I have already seen by tending to this crazy oozing spot on my rear for so long, I'm not too squeamish anymore. Anyway, everything went well. I was slightly infected going in, so the doctor left the wound open to heal. I was fortunate in that my sinus had found a path out to the surface of my skin and had not developed any tracts leading to other areas. The cyst was relatively small (though I would never have guessed it judging from how large and painful it would get during my last few infections), and the surgeon -this time a board certified colorectal surgeon- left me with only an inch and a half long incision right at the top of my crack. It is definitely painful to sit, lie on my back, drive, bend over, sit on the toilet, and cough, but what else would anyone expect after beig opened up and carved on? I am experiencing typical drainage which has gone progressively from bloody to something that looks more like blister fluid. This is what I was told to expect and, so far, I seem to be on the path to recovery. I'll finish up to avoid being too long winded here. I just want to let everyone know that this surgery does not always leave its recipients with baseball-sized gaping wounds or severe debilitation. I should be back to work sometime next week. I have had to deal with a bit of constipation, either from the anasthesia or the percocet, but that too shall pass (heh heh). I also want to remind those of you who are as furtunate as I am to have a loving and understanding spouse how important it is to thank such partners for enduring this with you. Mine has truly lived up to her "for better or for worse" promise (thank you, honey). Anyone who would like to contact me for support can email me at irmorecords@earthlink.net. If I feel you are serious about needing someone to talk to, I'd be glad to exchange home numbers to talk in person. This can be very scary for some people, and if there is anyway I can give back just a little bit of what has been given to me through this site, I would be thrilled to do so. RG

Date:: March 18, 2003

Story

Fantastic site! I've been living with my pilonidal sinus for a couple of years and have finally seen a doctor about it. It's a long waiting list so it will be a while before I can update you. This weekend I drove from Portsmouth to Sunderland (around 380 miles my route) This caused an abcess I was developing to inflame and cause me absolute bloody agony. I went to A+E and was seen quite quickly due to my odd walk and refusal to sit down. I'm typing this on a laptop as I lie belly down on my bed as I have a second bum-hole stuffed with Sorbsan. This is basically to reccommend a cocktail of painkillers I am on. Whilst at the hospital I was on a couple of wards and took various pills but the best is two Codine and two Parecetamol at once. The result is fantastic. It works fast and lasts for hours. It even took the edge off the packing, done for only the second time ever (watched by a young, rather fit, student nurse my age from the other university up the road!) If you can get hold of the Codine I would go with it. I'm not a doctor but I am a pilonidal owner and we all seem a nice bunch. Chris

Date:: March 15, 2003

Story

When I was a senior in high school (1996) I fell down the stairs in my house and slid all the way down on my tail. I then spent the following winter learning how to snow board (lots of falling on my rear). I sent the next six years believing I had merely chipped my tail bone, and that was why I had minor discomfort in certain sitting positions. Then, I was showering one day and I noticed that there was a light reddish lump at the top of my asscrack which just happened to correspond with the location of my supposed tail bone chip. I, being a big fat wuss decided to ignore it for the next several months (ignore your health and IT WILL GO AWAY)... Then my newlywed husband insisted that I see a doc to find out what it was. I spent the next nine or so months having the wound incised and debrided which was the most painful thing I personally had ever experienced that I can remember. During all this time my GP was telling me I had a "polynidel cyst". It was explained that i had some sort of cyst with root-like things coming away from a central site (in my mind, hence the prefix "poly"). After quite some time on of the nurses at the office recommended I see a surgeon about this thing that wasn't getting better. So in October of 2002, I made an appointment to see a woman (yay!) doc. I told her about my problem and she had a look and said I had a Pilonidal cyst. Needless to say, I was horrified that I had been visiting a GP who didn't even know the correct terminology for nearly a year. My surgery was scheduled for Oct. 30, 2002 (day before my favorite holiday). I had general anesthesia and my procedure went a lot like Sasha's (webmaster). What i was left with was not one, but two holes that were connected by a bridge of skin just inside my crack. My husband said he thought the cavity could fit two golf balls into it. I didn't need the three refills worth of vicodin that I was prescribed, in fact I only took it for about three days right before bed. I was back at work as a graphic designer within 5 days. The bad thing is, it has been four months and I have not completely healed. My husband is a volunteer firefigher and so (having a bit o' medical know how) he has packed my wounds from day two. Initially we were putting TWO six inch by six inch gauze pads into the wounds!!! I am pretty good at keeping it as clean as possible. The top section of the wound healed closed without incident, but the larger bottom hole remains. Last week the top scar began to ooze the icky greenish white fluid that comes from all healing wounds, but this time it is smelly. The odd thing is that it is also REALLY ITCHY, which is a sign of healing. The bottom wound (which is still open) has also started oozing the greenish white stuff in more volume, and there is more blood than normal... I can't seem to find any info on what possibly is giong on, and I have been so busy at work I haven't gotten to the doctor yet. (excuses, excuses). I decided to do my first bit of research on pilonidal cysts just today, and i was hoping to find a similar situation in my searching. I am really gald to have foud this place, because like the rest of you, I'd never heard of this, but am told it is quite common. It's good to truly know that I'm not alone. I will post back when I find out what is going on back there this time. --Jet 03.15.03

Date:: March 14, 2003

Story

POSITIVE (and informative) SURGERY STORY (part II): Well, it is done and everything went exactly according to plan. The days counting down to the surgery went by quickly (although it didn't seem that way during) and now, after having the surgery on the 10th, I FEEL GREAT! I could have stopped with the pain meds probably two days after the surgery, but they were OH so good. The only reason I did stop, was because Percacet causes constipation; all I’m saying - FOUR days - that’s it. The surgery itself went off without a hitch, really. I was never nervous and neither should YOU be, because it’s your own demons that are going to cause you to have a bad experience… just have faith and everything will be OK. They knock you out; before you realize anything you’re waking up and it’s all done. The only problem is my arm, where the intravenous was, has been swollen (just add a warm compress), but that will go down in due time. My Post-op appointment will be next Wednesday, the 19th, but I’m sure everything will be fine. MY NOTICE TO EVERYONE: Whether you’ve had the Cyst removed, are still dealing with the initial symptoms, or have had it lanced and are draining = USE 3M PAPER TAPE and J&J NON-STICK PADS (directly on the wound)! Nothing else! Trust me (and I’m sure everyone will agree) besides the pain before and during any intervention is made, this is the next most uncomfortable part. The wound packing and draining will go a lot smoother with the RIGHT packaging. I’m sure we have ALL become “The Masters of Butt Packing” (yeah, that doesn’t really sound right, does it?). I brought my own packing to the surgery and told the Dr, “use this… NOTHING ELSE”. He laughed, but since he had a Pilonidal Cyst, he KNEW all to well that I was DEAD serious. The first time I went to have the Cyst drained, they put this tape on me that I SWEAR wasn’t made for human skin! I was almost in tears trying to remove this stuff from my ass- I had to use scissors! And you think that’s bad, DON’T wait until the gauze STICKS to the wound. Trust me. Here's a shout out to Mom and Mrow for being there for me.

Date:: March 13, 2003

Story

Hi this is Grce again, I had my surgey last week on march 4th. It went really well. I got at the hospital around 8:15 in the morning and mi surgery was scheduled at 10:00. I went in talk to the anesthesiologist, and after that I remember they gave some medicine to calm me down and then took me to the operation room, after that I don't remember anything else jajaja. When I woke up in the recovery room, I did not have any pain, but my reaction to the anesthesia was not very good, and I felt dizzy.I went home, and slept for a while, and after that I tried to eat, but it wasn't possible, i would throw up everything. But the day after that i was OK. I took a week off from work, and my mom helped me with the packing change. I decided to go for the open wound surgery, and to me I think it was a good choice to go for that one. I was expecting to be in horrible pain, but I didn't. I didn't even have to take alot of the pain killers. I went back to work on tuesday, and today i went to my post-surgery appoinment. The doctor said that is healing pretty good, and that i'm doing a good job. So now I'm very happy , my doctor was great, and I hope the cyst never comes back again. For all of u that are suffering with a pilonidal cyst, i suggest surgery is a great choice, and the longer you wait the bigger the cyst gets. Driving ann sitting down is not a problem, but I bought a little pillow for my car so I feel more comfortable. Thanks for this great website, and good luck to . Grace.

Date:: March 10, 2003

Story

Sasha What a fantastic site. I have learnt so much in the last hour than I did spending 5 hours in accident and emergency yesterday. I am a 33 year old male living in Nottingham England and first noticed a problem about 15 months ago when I had a swelling and found it difficult to sit,sleep,walk etc. In time the lump grew and eventually my wife (very understanding wife!)sqeezed some pus out. It was probably the most painful thing I have ever experienced. It seemed fine until a week ago when it all started again. This time I went to the hospital and as soon as the doctor saw it, he diagnosed a pilonidal cyst saying it is was common among "hairy people" (Yes I am what you term in your article as a "hairy butt guy"!) He drain it, flushed it, and dressed it using only local anesthetic which was still painful but not as painful as my wife sqeezing it!. I am now sitting and standing up straight again with all that pain gone although it is quite sore, but a feeling I can live with for a while. At first, reading your site was quite scary but I think I have been lucky after reading of other peoples experiences, What pain must some of them gone through? I have to visit my local nurse daily for re-packing and dressing for four days and the surgen says my wife can dress It for my from then on. It's a shame we don't learn about these things until It's alredy happened to us. Once again, great informative site! Paul

Date:: March 10, 2003

Story

Hi, I would just like to say to all the people who suffer from pilonidal disease, is that the longer you wait the worst it gets. I had my surgery on March 4 and I am doing very well hardly any pain. I had mine stiched up with a drain tube. I hear alot about what other people say that the open healing is the best I think both are good approaches one just a little more Aggressive and not always needed remeber the chances of it coming back or infection there is only a 5 to 10 % diffrence. It was my first surgery and I had waited 2 years to get it fixed. Every Cut and Surgery is diffrent but dont wait it dont get any better.

Date:: March 04, 2003

Story

On Saturday 01 Mar 2003, i discovered a sensitive area when i woke up for my day. i am in the US Navy so at that point i was out to sea. iwent to a Corpsman(EMT Equivalently) and had him look at it for me he said it was probably a pilonidal cyst and he would make me an appointment for tuesday to have it looked at. on sunday i could barely walk and by 7P.M. the damn thing blew up(self-excised). i went in to see the Medical Officer on Monday and The wound was irrigated and examined there were five(5) sinuses discovered. once the wound was cleaned it was packed with iodaform packing and then covered with guaze. I was given 2 Tylox and sent to bed. this morning i went to have it re inspected and redressed and irrigated there were no sinuses present and the wound was alreadyforming exudate. the pain is bearable now but on the first two days i was sure i was going to end up in awheelchair. there was no hair in the cyst cavity. the cavity itself is aproximately 2 in. deep X 2 1/2 in. in circumference ans the opening is almost 1/4 in. around. thanks to the quick action of the Medical Officer and the Corpsman this thing is already beginning to heal.

Date:: March 04, 2003

Story

POSITIVE (and informative) PRE-SURGERY STORY: I read a few, but have absolutely no intentions of reading any more, of the previously posted stories. I am going for my surgery in 6 days and do NOT intend on getting 'spooked'. I have a humorous and unfinished story (as I will update you after my surgery). I went to this concert in High School twelve years ago and it was the first time I had EVER gotten 'inebriated'. To make this posting short- During the concert, I jumped into a sitting position on a wooden chair and landed on my tailbone; I couldn't sit for weeks! This I think is what caused my Pilonidal Cyst (besides in grown hairs, trauma has been attributed to a cause). For TWELVE years I thought I had a chipped or sprained tailbone. The Dr.'s told me it's not uncommon for someone to have the Cyst (called a Boil, when it flares and drains) for that long. They even went as far as to say that some Dr.'s hypothesis that EVERYONE is born with the Cyst; it only flares up on a small percentage. Anyway, I joined that percentage last year, when I had my first one lanced with a 'local'. After it flared up a second time, and my primary Surgeon was on vacation, the 2nd-airy put me on CIPRO, which drained it (it's rare, but worth looking into). Now, on my third flare up, I go under the knife! I place a lot of faith in my surgeon, because HE HIMSELF had a Pilonidal Cyst; who better to understand my pain, then the *@#$ SURGEON! Now I've read some procedure descriptions on this site, which seem to differ from what my surgeon has described to me. He says it is a “relatively new procedure", where they go in from the side to clean out the area. This way it heals easier; the incision being right up the crack doesn't heal as easy (again, this is what he has told me; I will update you POST surgery on March 10th). -Marcus Mohammed

Date:: March 03, 2003

Story

Mine was 1992. First, I noticed that there was blood on the back of the toilet seat. I had no idea what it was, cause it wasn't in the water, so I wasn't bleeding rectally. I went to the doctor. Here's the first warning... I was a member of Kaiser Permanente Health Group in California. NEVER EVER EVER USE KAISER. They are morons and murderers and are responsible for a permanent arm disability in my sister, my fathers DEATH, and the following bit of "care." They are reasonably priced, but my family has learned that you get what you pay for. The first "doctor" (read: idiot) looked at it, and said he thought that somehow a tube had grown from the colon to the skin in essence making another bunghole that didn't have a sphincter. Obviously a PhD from the clown college. Next guy did... an exam (hint: He said "okay, now "cough") he didn't know what it was, cause it didn't F***ING GO TO THE COLON. So he sent me to a surgeon. That guy said "Oh. Pilonidal Cyst. come in next week for surgery. Have a lolipop." So I came in the next week. They put an IV in me and make me all comfy and stuff, then I went night-night. I woke up without a cyst. The doctors tried to suture it. That didn't work. Next they did a skin graft. That didn't work, so they just gave my parents instructions (I was 20 at the time, and still living at home) There's nothing quite like being 20 years old, and having to lie face down on the kitchen table with my pants down while my mother or father had to put a saline-soaked gauze pad in a giant open wound on my backside. I was not allowed to swim or take baths until it closed. They said it would take 6 months. It took almost 2 years. (along with a "cleaning out" session at the hospital where the nurse put the blood-collecting bag IN FRONT OF ME). Two F***ING years. In the... "end" (hee hee) it went away (albeit leaving plenty of scar tissue) and today I'm insured with another medical company through work. May Kaiser fall into bankrupcy and all their doctors and lawyers succumb to smallbox and ebola. amen.

Date:: March 01, 2003

Story

Hey everybody. I'm a 26 year old male in good health. In April of 2001, I noticed I had a lump to the left of my tailbone that hurt like hell. I went the family physician who told me that if I soak it it'd go away. Well, that didn't happen. After taking some antibiotics, which did nothing, I stumbled upon this site and became much more aware and depressed at the condition I had. The main thing that bothered me initially was that I had no understanding of why I had the cyst. I came to the conclusion much later that it was probably a congenital condition. Frustrated and suffering, I did what I could do to ease the pain. I had been planning to move from Minneapolis to Los Angeles to work in the film biz when the cyst problem started. Being rather stubborn, I went ahead with the move a couple weeks later. Driving for three days straight with nothing to ease the pain but a donut cushion with no air conditioning was hell incarnate. I got to LA in extreme pain. I walked around LA for a week looking for work and finding very little. I worked odd jobs, but constant pain kept me from doing anything too physical and sitting too much. By August, the pain had gotten so bad that I knew something had to be done. I became aware that the cyst was creating synus tracts around the infected area and that if I didn't have surgery soon, it would be too late. Having no friends or family to help me with post operation care of the wound, i got desperate hoping to get a neighbor or someone from a nearby church to care for me. In the end, I just didn't have the heart to ask a complete stranger to clean and rebandage a wound. Then things got really ugly. September 11th came and went and by mid-October I had run out work, money, and had few options but head back to Minneapolis. I decided to make the trip back in early December 2001. I had just flown to and back from Minneapolis for Thanksgiving and 2 days later I got in my car and made the trip back to Minneapolis to stay. When I finally got back to the Twin Cities, I was in so much pain that I could barely stand. For the next 2 weeks I begged at every clinic to have the cyst removed. Without insurance, however, no one would operate. I applied for state health insurance but would have to wait another 6 to 8 weeks before coverage began. I was determined to get rid of the cyst, however, and by the grace of God, I landed a job that gave me instant health coverage. A day after starting my new job, I went in for the operation. After the operation, I went through a few months of intense pain as my closed wound was cleaned and the bandages replaced. After 7 months, the scar was all that was left and now, almost 2 years later, I can BARELY feel the scar. Having the operation was the best thing that I ever did, healthwise. I can't believe that I waited as long as I did. If you have a cyst, get it removed NOW. Good luck to all the people suffering out there. You are in my prayers.

Date:: March 01, 2003

Story


Date:: February 11, 2003

Story

First of all, I want to explain what a blessing this page has been. I found it about a week ago, when I was at one of my lowest points since my surgery, and I felt as though no one else understood what I was going through. I warn you all, my story is a little long and not for the faint-hearted. Here I go... Right now, I am a female freshman in college. About a year ago, during my senior year of high school, I noticed that my tailbone would hurt when I sat for prolonged periods of time. I shrugged it off, and attributed it to the fact that I would always sit in a recliner to do my homework and study. The beginning of the summer, I noticed the pain was getting worse, and I would find a little discharge (of what was apparently pus) coming from my rear. I didn't know what it was, and I didn't pay a lot of attention to it, until one day I was out with friends and found it had leaked through my pants. I knew I needed to see a doctor. Now, I have a very high tolerance for pain, and I guess I had been living with these cysts for a while...and I was stubborn, and HATE the doctor...so I devised a little system for the few weeks in the summer before I saw him. I would stick a little cotton ball in my bra and when I went to the bathroom and found the discharge, I would stick the cotton back there. Hey, I thought I was pretty clever. ;) Anyway, I went to the doctor (a general surgeon, who had previously performed surgery on me) around mid-July and he diagnosed me as havng mulitple pilonidal cysts. I didn't know what that meant, but he scared me and told me I would need surgery because I had such a bad case. Well, I ended up scheduling my surgery for the end of July, and those two weeks prior to surgery had me convinced I was doing the right thing. I mean, who wants to live their whole life stuffing cotton in their bra? So I have the surgery and the doctor informs my parents that it was the worst case he had ever seen in his years as a surgeon. I had approximately 12 cysts and he was amazed I hadn't complained until that summer. He said he had to remove a lot of tissue and he stitched the wound closed (and for the first week, stitched this towel-like rolled thing to my butt...it was hot...lemme tell ya). Not to scare the folks on here, but I have never felt pain like that in my life. The painkillers I was given all upset my stomach to the point that I would throw them up. So there I lay in bed, doped up on excessive amounts of Tylenol and Advil. The pain was so great that I can remember literally having to throw myself into a crying fit so I would tire myself out and go to sleep. I became so weak because I could not move. I would wake up every half hour at night to try to roll myself over, which in itself, was another half hour ordeal. I think the worst pain was the pain I experienced in my hips, which literally bruised from me being unable to do anything but lay on my side. I convinced myself if I followed the doctor's orders and did not push myself too much physically, I would let this thing heal. The pain was so great that I could not sit until 3 and a half weeks later. It WAS getting better, but then a few days before I was supposed to leave for college, I'm in the shower and notice there is a HUGE bubble on my backside. It apparently drained in the shower and thus I began what is now six and a half months of being a slave to this injury. Every day, I use seven gauze pads and two maxi pads to prevent this from leaking onto my pants. EVERY DAY. While at school, I suffered a few minor infections, but since Christmas, the infections have gotten so bad as to literally prevent me from doing anything. I go to class and to work, but I feel compelled to sleep ALL the time. I was given antibiotics, which help, but as soon as they run out in 10 days, the mess begins again. Some days it is not as bad as others. I mean, some days there is only a clear liquid that gathers on the gauze, but never leaks through it. Other days are a different story. The wound (which, by the way is about the size of a dime) will BLEED so badly, to the point to where when I go to the bathroom, it will get all over my clothes and all over the floor. That is bad enough when it happens in your home...but I am in a dorm sharing a bathroom with 25 other girls. This may be gross, but going to the bathroom is SO painful, so when the wound is really bad and bleeding a lot, I will seriously not drink anything and take Immodium so that I won't go and subject myself to further pain. Few people know of this illness, and those who do cannot comprehend the severity of it. People mock me when I always nap, but they don't realize that I physically am drained ALL THE TIME. I have given up on wearing light-colored pants. I occasionally will wake up on my back, and want to scream in pain. I cover my sheets with a towel each night, because I don't even want to imagine the blood I could potentially find all over my sheets in the morning. I am paranoid that people can see the pads through my pants. I listen to my friends talk about their little thong underwear and I know I will never be able to wear things like that. This has taken such a toll on me both physically and emotionally. If I had known what the outcome of this surgery would have been, I would have GLADLY gone the rest of my life stuffing friggin cotton balls in my ass instead of having to buy out every drugstore of their gauze pads and medical tape. I am 18 years old and I have had literally 6 months of my life taken from me. I have been to the doctor numerous times, and no one can understand why this isn't healing. I'm pretty sure I will have to have more surgery this summer, but I don't want to voluntarily subject myself to pain like that again. There is not a single moment of the day when I am NOT in pain...I sleep not only because I'm tired, but because for a few hours, it allows me to forget about the pain. Perhaps the worst thing is that I have almost accepted this as the way it is going to be. I put my gauze pads and tape into a bag and take them to the shower every morning, and I don't even miss all the pairs of light-colored pants I no longer can wear. I have given up on the attempt of being able to go for a jog with my friends and I don't even think twice about sitting leaned to one side during my classes. Going to the movies is almost out of the question, but if I DO go, I make sure to do it on a Friday so that I can sleep or lay down the whole next day to minimize the pain. It kills me that this is what I have been reduced to. It upsets me that I have to spend the first 6 months of my life away from home and worrying about this. I am a strong person, and it hurts more than anything to cry about this each day. I hope I didn't scare anyone who read this, but it really feels SO good to have gotten this all off my chest. I am obviously in the small portion of the statistics of those who unfortunately do not have a successful surgery. Thank you.

Date:: February 08, 2003

Story

For two years now, I have been trying to figure out what was the cause of my low self esteem and chronic depression. Now, after reading almost the entire contents of this site, I think I have figured it out. All this stuff started in the Marine Corps, where I was constantly told that my pains were nothing... pains in my hips, knees, and tailbone, were all figments of my imagination. Then I worked at a deskjob doing tech support for 6 months, and the flare ups from my poor posture and constant sitting were almost unbearable. About 8 months ago, my fiancè found two tiny holes in the cleft of my ass, and could sqeeze puss out of one of them. We thought nothing of it, as after she removed a single hair and a "skin tag", the pain subsided and one of the holes went away. Of corse, this was not the end, and the pain came back two-fold. About a month ago, I visited my campus doctor, who told me he had no idea what was wrong. X-rays showed nothing abnormal, and when I went back for my followup, the pain had again subsided. Now, the pain is back ten-fold. I can barely sit, it hurts to sit and stand, and it even hurts when I lie on my side. I just sent an e-mail to a Colorectal speciallist at the Medical College of Wisconsin and am waiting for a reply on an insurance inquiry. Hopefully, now that I have found this site, I can provide my doctors with all the information they need. The only thing I am really worried about is missing school and work... pain is just weakness leaving the body, as they taught us in the Marines. I work at Home Depot, basically doing hard labor which doesn't help the pain in the least. It is in fact so painful that my upper body is starting to feel the effects, I feel weaker because of this pain. Heh... I wonder if work will pay me workman's compensation for this one. Adam

Date:: February 05, 2003

Story

I had surgery to remove my pilonidal cyst exactly one week ago. When I first started to experience pain I thought it was a bruised tailbone, then a cyst, and then maybe even a bug bite (because of the infection). I had to go to two doctors before they realized what it was, what proper antibiotics to put me on, and get me an appointment with a surgeon. Before the surgery I was on the web frantically trying to find out information and read other people's stories. Let me tell you, majority of the stories I read did not help calm my nerves and I went into the surgery pretty scared! Since the surgery I have been in little or no pain. I bought myself a pillow with a cut out for the tailbone at an orthopedic store. The most painful part for me was the changing of my packing. Maybe I was lucky and the second doctor caught it pretty early because the surgeon only had to make 2 dime size incisions to take out the cyst, infected tissue and the hair. Nevertheless, I take a painkiller pill now once a day instead of four and it's only been a week! For anyone who reads this, I wanted to tell you I had a success! Of course, it could very well come back but so far my wound is very clean (with 2 20min soaks and 2 packing changes a day). Best of luck!

Date:: February 05, 2003

Story

I'm 18 and I first discovered my Pilonidal Cyst the summer before last. It wasn't anything major, it didn't hurt but it would drain a little every now and then. In mid January of this year I decided to tell my mom that it was still there. I knew I'd probably have to have surgery and I was REALLY scared, but I went through with it anyway. I had the surgery on Jan. 29, 2003. They stitched it up rather than leaving it open and I pray that it won't come back. Most of the stories I've read say that it has for them. I don't know what I'll do if it comes back. I don't see the point in having surgery after surgery if it's just going to come back. :(

Date:: February 03, 2003

Story

I had a Pilonidal Sinus cut out 4 years ago, when I was 27. (It's been open that whole time) I never had any problems with Diagnosis but after 4 years and 10 doctors (3 in New Zealand around 6 or 7 in Holland) I think the view that most doctors are not really sure how to treat it is true. Since my first operation I have had 3 other major surgical procedures and a couple smaller debridements. My last operation was full on. I couldn't stand up without passing out, for a few days. The doctor discribed it as "a radical procedure". Which converted, means he cut out heaps. Anyway, my dutch doctors tell me just to wash it twice a day and not to remove the hair around it. They told me it doesn't matter what exercise I do it won't effect it. Even thought it's been 6 months since my last op and it hasn't closed they still tell me it will probably heal over before my next visit. All they need to do is look a my other 20 visits over the past 2 years to figure out that might not be the case. So finally I think I might try and use some other advise such as this site. Good to see sites like this exist. Nice work.

Date:: February 03, 2003

Story

I am a 22 year old male residing in Sale Victoria Austrlia. The date today is 3 Feb 2003 and I have just found out that I have Pilonidal Disease. Like everything these days I have come home and looked on the web to see what it is all about. I knew that it was a common problem as the doctor told me that it was. I work in the defence force (RAAF) and the people around you here are you family so I told them what my problem was. I was amazed at the number of people who have actually had this. I have about 50 people working for me at present and at least 20 of them have had this problem at some stage in their life. I am not really shocked that I have this problem as I had an idea from time at university what it was. I am looking forward to the operation which will remove the it from my back and going through the healing process. I am thankful that I have this problem and not a life threating one such as cancer. Well my operation is 25 Feb 2003 and I will report back at a later date with more information of how it went.