Personal Stores Archive #12

Date:

January 29, 2003

Story

My name is Aaron, I am a 21 year old male and in my second year of college. My story with the Pilonidal Cyst started at the age of sixteen. Being the naieve teenager that everyone tends to be about medical issues, I kept silent for 5 years and at the age of 21, I couldn't stand hiding in the shadows any longer. The cyst was a source of alot of problems for me as far as low self-esteem, an inferiority complex, and even as much as manic depression whis led to thoughts of suicide. Growing up I was constantly having to watch myself as far as what I did, who I did what with, etc. because I wanted no-one to know of this. In anger I lashed out at everybody as towards why I had it. My parents, my girlfriends, even God. But around 6 months ago I finally started to research what could be done for me. And my answer was found in extensive research, prayer and my fiance's counsuling. Today is Jan. 29th, 3 days have past since my surgery and a weight of great magnitude has been lifted off my shoulders and off my heart. I thank the doctor who has taken this from me for he better. And I have made my peace with God. Through him I will journey through the long road to recovery.

Date:

January 26, 2003

Story

about a year and a half ago, we were on vacation in florida. i noticed that my tailbone was in a lot of pain. i thought it was an "ingrown hair" that i could just "pop". well, two days ago i found out it was an ingrown hair. back to the story.. we left the next day, and i went right to the doc. the doctor tried 6 times to numb it with a needle, and it didnt work. i went ahead and had it lanced and drained while i was alert and awake. it was the worst pain in my life. a few months later, i felt a knot above the original spot and to the right. i let this thing be for a few months, when it started poking through. it looked like a really big zit that couldnt be popped. i always squeezed it and tried to get rid of it, but only a lot of blood and puss would come out, but it wouldnt go away. i kept it for about a year until it was the size of a marble, and there was swelling under the skin leading to my rectum. i had surgery january 24th. they had planned on giving me anestheic in the hospital and removing the cyst. during the surgeyr, the doctor realized the cyst had "fingers" coming from it, and he consulted with my parents on if he should remove it. they said yes, and he removed everything out of my body. when i woke up, they told me that i had a 7 inch long cut going right above my rectum, up to my tailbone. the cut is 2 inches deep. today is the day after surgery, and i am sitting down doing this, but im on hydrocodone. i have a 8 inch long thick piece of gauze stitched into my butt cheeks, ouch. i will keep you posted on the healing.

Date:

January 21, 2003

Story

Let me first start off by saying this is a great website for those (like myself) who were pretty clueless about this whole "pilonidal" thing. I had never even heard the word until I was in the ER this past summer with a really bad flare up. But I did myself a huge disservice by spending too much time reading all the horror stories posted here in the weeks leading up to my surgery. I had my cyst removed on January 6, just 2 weeks ago, and I'm doing GREAT!!! I go today to have my stitches removed, and I'm already back to work. I can sit, stand, drive my car, go up my stairs at home, all the things I thought I either wouldn't be able to do, or would cause me too much pain to do them. I was fortunate to have a wonderful surgical team, and a great pain killer that I took faithfully every 6 hours. (But only for the first 3 days.) As long as I laid down on my side and took it easy getting up and down, I was OK. The worst thing I experienced was trying to get comfortable while trying to sit. My hips got sore from laying on them so much, and I had to change positions a lot. For about the first 10 days or so I had some discomfort at the site of the incision. I kept telling my husband I thought they had sewn my crack up too tight, because that's really what it felt like if I moved too far. But for all of you out there facing surgery, or even considering it, PLEASE don't be frightened off by some of these negative experiences. Sure it's a possibility these worse case scenarios could happen, and maybe I just got lucky that my experience was fairly mild in comparison. But you have to do what it's best for you long term. Unfortunately, I let myself be frightened into postponing this surgery for far too long, and even on the day of surgery I almost chickened out. (I was bawling my eyes out in the parking lot for 15 minutes before my husband "made" me go into the surgical center.) Now that all is said, and almost done, I'm glad I did go through with my surgery, and I hope you make the best decision that is right for you and your life.

Date:

January 17, 2003

Story

My battle with my pilonidal cyst was a two and a half year ordeal. It was discovered when I first developed an abcess, and had to have it lanced. After that, I sought the opinions of two different surgeons, both of whom told me not to have the excision, due to the poor success rate and discomfort involved. I lived with it for 2 years, having flareups every once in a while, but just maintaining it as something I usually didn't think about. That all changed 6 months ago, when it flared up again and didn't go away. For 6 months, I lived by taping gauze to myself every day, travelling with medical supplies, and always living in fear of what might leak onto my pants and be visible. I went through my college graduation with gauze taped to myself. I had finally had enough, and insisted upon the operation. I had the operation six weeks ago, and already I feel better. According to my surgeon, the cyst was enormous. My surgeon stitches people back up after this operation, but it was so large they had to put a JP drain in me that had to be emptied every day by a visiting nurse. The pain was much less than I anticipated-the recovery as a whole wasn't bad, if you can get used to lying on your stomach. The one exception is going to the bathroom-it is a nightmare. I developed a small infection, but I am getting over that, and feel much better-on the road to recovery. While I believe my surgeon about the complications and am still concerned that it could come back, I would encourage anyone who had a cyst to seriously consider having it removed. I would hope that no one else would have to live like I did for six months.

 

Date:

January 14, 2003

Story

Hello, I am a 23 year old male living in Mexico, I first noticed a bump in my tailbone but never paid much attention to it since it didn't really hurt. However, about 1 1/2 year ago I fell down and later noticed blood on my underwear, I thought it would heal eventually but never did. I had no idea what it was, when I went for a regular checkup, the doctors said it was an abcess but never referred to it as "pilonidal". I wasn't aware of the true definition of this condition until I came upon this website so to the webmaster, thanks for making it. After reading this site, I quickly went to a specialist who was familiar with the problem, last week I underwent open-wound surgery and am currently recovering. To all those people considering surgery, I say go for it, it does not hurt (I had it done under Spinal Anesthesia which doesn't hurt either and keeps you concious during the whole thing since all it does is numbs you from the waist down and you don't get nauseous or groggy afterwards like with general anethesia). Cleaning the wound is quite a pain, and sometimes hurts but hopefully it will soon heal and will not recurr. RDA.

Date:

January 10, 2003

Story

this is an update from my previous post on july 13, 2002. I am finaly healed. recommend taking the multivitamen, and 2 - 3 packing changes a day. good luck. Neo0983

Date:

December 26, 2002

Story

Two weeks ago, on a vacation to Hawaii, I realized my tailbone didn't feel good! I attributed it to sitting in a squishy, totally uncomfortable position on the airplane for six hours. However, it seemed a little odd to me at the time, in that I am a 27 year old female, in pretty good health, that an uncomfortable plane ride could affect me like that. My week's vacation was only a little marred with pain. All water activities were fine, but anything that involved lying down on my back and sitting were out of the question. When I got back to San Francisco I went to see my accupuncturist, because I thought I had done something to my tailbone, my back. He told me I had an infection but didn't know (or explain) why and still stuck me with needles. This usually helps the pain, but not with an infected cyst millimeters under the skin. NOTE: if you think you might have something wrong with your tailbone, DO NOT GO TO THE ACCUPUNCTURIST!!!! A day later, now in excruciating pain (no sitting, standing or lying possible without MANY tears shed!) I went to my regular doctor. He suggested it was a tailbone bruise, but sent me for x-rays to rule out a break/fracture. I was put on Vicadin for the pain and told to go home. A day later, still with intolerable pain, I felt a small raised bump on my swollen tush, right at the top of the butt crack, slightly off center. I called the doctor and told him that there was now swelling that felt like water blisters... was something wrong? He told me it was fine... and to keep him posted if things changed again. That afternoon, in the middle of a business presentation, my cyst exploded! (yuck!!). I had no idea what was going on, but I went to the batrhoom and found my bum was expelling all of this stinky green infected puss. THIS WAS NOT A TAILBONE INJURY!!! Without knowing anything about this condition, at the time, I went to my parent's house for two days to let the cyst apparently "drain" and thought it would let up on it's own. Two days later, no change, something was clearly wrong and I headed for the doctor's office again. At this time he told me I DID have a cyst and it had to be lanced and within a matter of minutes I had about 9 needles shoved into my ass for freezing (the needles hurt worse than the lancing) and then he lanced the cyst. He packed the incision with gauze and told me that I would have to pack it myself each day afterwards and come back to see him on monday (it was a Friday). Okay, MYTH 1: it's easy to change your own packing. I almost fainted from the pain of touching the packing...without even tugging on it. The next day I went to the URGENT CARE CLINIC at the hospital and met a FANTASTIC doctor (dr.nadler) who really cleared up the truths about this disorder. I still don't feel like I know what's going on 100% but I have a much clearer picture. The doctor unpacked my wound, squished out lots and lots of puss, and repacked me. And, has done so every other day for almost a week now - today will be my 4th visit. He seems to think it's congenital (but after reading all the info on this site I would believe that it's partly congential and partly just a matter of getting hair into that area unbeknownst to you!). Uhmmmm, so I'm a little freaked out after reading ALL of the horror stories on the site. Sasha, whoever you are, you are a GODDESS for compiling this site... although a little freaky, it sheds SO much light on this bizarre disorder. At the doctor's today I am hoping that he will tell me I don't need anymore packing. The packing itself isn't the biggest problem, it's mostly the diaper sized gauze bandage taped onto my butt to protect the packing!!! It's itchy and annoying and I feel YUCKY, but i suppose it's a small price to pay for healing. I am considering having the surgery next year (once my insurance kicks in... hello, HAVE INSURANCE... it's sucky and expensive not to! i learned a good lesson!) but i truly wonder what the statistics are on people having recurrences after having the cyst lanced and squished out? If anyone has feedback or questions or concerns or just wants to chat about their butts... email me! I'd love to hear it. I'll keep you posted on my development and surgical options/decisions as they arise.

Date:

December 26, 2002

Story

Hello, I am a 31-year old male from Indianapolis, IN. I have recently had my pilonidal cyst removed the RIGHT way and it has been great (especially for the holiday season when getting together with family and actually being able to sit). I had first discovered this condition when I was around 10 years old. I had a small oozing lump on my tailbone that made it impossible to sit. My mother had taken me to the hospital and the lump was lanced and drained. No more problems for about 17 years. Then, during the summer of 1998, the lump had returned and, during a visit to the doctor, I was told that this was a pilonidal abcess and that it had to be surgically removed (I had no idea what it was 17 years ago). It was a simple outpatient surgery that took about an hour to perform. I elected to have general anesthesia due to the physical position I would be in for the operation. The surgeon performed the operation, stitched up the opening, and after about 45 minutes in recovery, sent me home with a prescription for some pain medication and instructions for care of the wound. After a few weeks of oozing and general wound care, everything seemed to be ok. It was not. For the next 4 years, I spent countless hours taking hot water baths, seeing the surgeon, seeing a different surgeon, visiting the emergency room (one time on Christmas Eve), and doing everything I knew how to relieve the pain of a pilonidal cyst that would not go away. The surgeon kept saying the same thing over and over - "you just gotta scrub the dickens out of it". By now I was pretty frustrated. I was living in Colorado Springs, CO at the time and was going to relocate to Indianpolis soon for a new job and decided to just hang in there until I got to Indy. I had my new doctor look at it and they had indicated that it needed to be completely redone (go figure - I found out later that the previous surgeon "missed" a couple of areas). I went through yet another surgery and had this mess restitched after the procedure. HOWEVER, this doctor had the intelligence enough to realize that the stitched-up opening was only allowing it to become reinfected (it may work well for some, but not in my case). She removed the stitches and left the wound open (which scared the hell out of me when I looked at it in the mirror). She instructed me to pack it with gauze twice a day and to follow wound care guidelines that are pretty much the same as those shown on this website. The wound is healing wonderfully, and I only needed the pain medication for a couple of weeks. Even though the wound still has a little ways to go, it is healing well and I don't feel any pain! I am thinking this may be the end of an almost 5-year ordeal with this issue. Leaving the wound open was gruesome, but very effective! My thanks to the individual who created this website. The information was very helpful. God bless!

Date:

December 22, 2002

Story

Sunday, December 22, 2002 Thank you Sasha for this site. It has been a great source of information for me and led me to get my cyst removed surgically last Wednesday..Dec. 18th. I first noticed the cyst about five years ago but I didn't get diagnosed until about six months ago. I'm now sorry I didn't get diagnosed sooner because over the past few years it occasionally flared up and gave me a sore and messy problem. The surgical procedure performed has left me with a drain (a thin flexible tube implanted under the skin below the incision where the cyst was located and which connects to a pyrex test-tube-like device taped to the side of my leg). The rest of the incision was sewn shut so I do not have an open wound. I change the reservoir (test-tube-like thingie) two or three times a day and the draining fluid is now far less abundant than the day after the surgery was done. I have experienced absolutely no pain from the surgery...and I've only been taking one 25mg vioxx a day since the procedure was done. Yesterday I drove a car for the first time since the procedure and had no real difficulty. I get my drain removed tomorrow and hopefully will never have to deal with this "pain in the butt" ever again. Sincerely, Mike

Date:

December 19, 2002

Story

Hi again, I wrote to you all a couple of days ago about my surgery and the pain I went though before hand. Well I just came back from my doctors from having the stitches removed. Argh!! I still have 3 stitches in there. The doctor was saying that the incesion is still oozing a little and have to wait to have the other 3 removed. Can I tell you, having stitches in that area is not bad, it just hurts like you wouldn't believe when they come out. If you have stitches, be prepared for hell when they come out. I now have a full week to prepare myself again for the pain as the last 3 come out then. Take care everyone!

Date:

December 19, 2002

Story

Hello all, This site has been a lot of help, thank you all for your stories and encouragement. I just got back today from spending 2 weeks in a hospital in Korea!!!! Yikes!! I'm stationed in Korea for a year, and I like Korean cuisine, but if you thought U.S. hospital food was 'shady'... Anyway, finding out I had a pilonidal and that I had to have surgery RIGHT AWAY caught me completely off gaurd. I have had no previous history with the condition documented. I've never, not even with this incident, had any drainage or anything coming to a head. However, thinking back it could be that some of the "funny pains in my back" down near the tailbone might have been smaller flare ups before. I'm fairly used to sports related injuries, and aches and pains being in the military, so I'd shucked if off. During this incident, I thought I was just having a 'sore back'. Well, 4 days into this, getting worse every day, when I couldn't even bend over to tie my shoes, I went in. I thought maybe I'd slipped a disk! Nope, my Dr. said, too low for a muscle. I'd felt at it, gingerly, and it felt like a fist with two knuckles extending down each cheek, not cool. So she brings out the "Big Book of Things You Don't Want to Have" and says, "Aha! You have a pilonida abcess." As you can imagine, I had no idea what she was talking about, but before I could blink, whe handed me the Clinicians Guide to read while she did up the paperwork to refer me to the Korean civilian hospital in town. Our little post doesn't support it's own hospital. I was rushed up to the hospital, got to see the inside of my own colon on TV (although what they were doing in there I still couldn't figure out) and within the hour was in surgery, local anisthetic. After surgery I was going here and there for bloodwork, X-ray, etc. and noticed I was leaving a puddle of blood wherever I'd sit. I still had uncontrolled bleeding from surgery and had bled right through my shorts and pants. I really feel for my wife now!!!! LOL Anyway, I told a nurse, well pointed, they didn't speak much English, and went BACK into surgery. So after 2 surgeries that day, I was admitted. They left the site open and packed teh 3, count 'em 3, incision sites with gauze once or twice daily, depending on discharge, for 12 days of fabulous inpatient care. Also, my surgeon, Dr. Yoo, who did my dressings daily too, was a no nonsense, get in there and PACK THAT GAUZE clinician. Wasted no time, but left me feeling a little tainted afterwards. That might have to do with the fact that there was an assistant spreading my cheeks like butterfly wings while he'd do it too, ROFL. So after 12 days of open healing, they put in primary sutures day before yesterday, and I was released today. I've yet to see what my regular Dr. here says for follow up, I've got an appt. tomorow. It'll probably be, keep changing the dressings, and no exercise for about a week or two. Golly, I'm heart-broken, LOL. I envy many of you who have had physicians who SPOKE YOUR LANGUAGE. I think that was my biggest challenge going through the hospital portion of my care. That and the fact that my haunches have had all of the hair ripped out of them in the last 2 weeks. I'm still sitting hunkered forward and sideways in my chair, of course, but the only thing I'm taking is a little Tylenol. I don't know if this is of any use to anyone, but I hope so. At the very least it's a "Well heck, mine wasn't THAT bad!" Thanks again for all the help you have been to me. Good luck all, and may all your chairs be soft. ;)

Date:

December 18, 2002

Story

Well, here's a follow-up. I'm the 43 year old guy in Maryland who posted his pilonidal story on November 25, 2002. It is now December 18, 2002, 3 weeks +, and I am without symptoms. Gone. I may be premature, but I doubt it. I must be one of those lucky few who managed to beat this thing early. Perhaps that's the key: early detection, and aggressive self-treatment. That dreadful night, when I felt the cyst first flare up - the aching, stinging itching, and the drainage and mild staining, I HIT IT HARD, and I never let up with the rubbing 70% iso-alcohol. Day in, day out, smoetimes maybe four times a day, for 3 weeks. It stung a bit for about a week, with each application, and then it stopped stinging altogether. The angry, quarter-sized red bullseye, right at the top middle of the cleft is GONE. Just clean, healthy, pink skin. I've gently felt around the outlying area for any kind of lump, or voids, or a sinus. Nothing. No pain, either. I realize how undignified all of this is, how seemingly self-absorbed I might seem, but, HEY, this is all about successful self-treatment of a potentially NASTY (even life-threatening) medical condition, and AVOIDING AWFUL SURGICAL interventions and follow-up. I also write this post for the benefit of others who might have caught their cyst early on, like me, and are wondering what to do next. Having said all that, I also did the following: each morning that I'd shower, I'd take a Gillette twin blade razor, and shave all up and down and around, on both sides of the area, so as to make it smooth and bristle-free. And that's EXACTLY what I discovered down there - bristles. I really didn't know they were there before, these peculiar, 1/4 - 1/2 inch long BRISTLES surrounding the cyst ("neonatal dimple"?), and they're almost clear/transparent, and I have dark brown hair. Some of these bristles spanned across the cleft, and seemed to be a bit tangled with others. They're quite stiff, with high tensile strength (is this waaaayyy too much detail? :P ). Well, out they came with the razor. Also, as I'd finish up with the shower, the last thing I'd do is give the entire region a final rinsing off, just to eliminate the possibility of any stray hairs from my head washing down and lodging in there and causing further mischief. Egads! Apparently this can happen, and there's a body of mounting mmedical evidence and speculation to support that conclusion. I've done my homework, researched the web, and whatnot. Pilonidal cysts really SUCK, as you all know, and I don't want to go through the surgery and packing and draining, possible recurrence, etc, that most have you have undergone. The thought has occurred to me: some of you might be thinking: "Well, what you had wasn't a pilonidal cyst. It must have been something else." You'd be wrong. The symptoms, the location, the sensations, the angry, red appearance of the "insult", the diameter, etc. Plus, the fact that it tends to run in families. As I recounted in my first post, my father had a really bad case of it, and more recently, my younger brother had it. Anyway, so far, so good, I'm keeping my fingers crossed, and I'll continue to be vigilant. If I have another flare-up like the last one (which was the first one, really), say within the next month or so, I can live with it, and my with my procedure. I hope this may be of help to some of you.

Date:

December 17, 2002

Story

Well here i'm 2 wks after my lovely surgery, all is great, not too much pain, but it is bearable. It all started about a year ago when one day i noticed that it really hurt to sit and drive. I thought i had justed brusied my tailbone, as i do alot of horseback riding, and just came home from a show. It got really bad and deceided to see my doctor, she did the normal thing prescribe anitibiotics, as she said their was a infection. I thought great take some horse pills (cause they were huge), and everything will be great, well it was for a little while, the pills did their thing, cleared it up. But that nasty little bugger came back about 3 months later, not as bad mind you, but it came back. It went away on it's own. Whoo-Hoo. And again 3 months later it came back again really mad and huge. Again, back to the doctor for another round of pills to take care of it. They did their thing again Thank god. And again it came back twice more, not bad, just annoying at that point, and they went away on their own. Just this past Sept, it came back with full vengence, I don't know if it was making up for lost time or what, but i was in serious pain. At the doctors office for a third time for this little tailgater (as i like to call it). The same pills were once again perscribed, and an appt with a general surgeon was made. The pills this time didn't work argh!!. The appt with the surgeon was in 2 wks, (great 2 wks of pain!). When one night i got home and couldn't stand the pain anymore i made my way to the local hospital's emergency room where they froze my behind and opened it up to drain it, to releive my pain. (I love them, they took my pain away). They also suggested to call the surgeon's office and move up the appt. Next morning i called, and had the appt moved up one week. The day of the appt came, and the surgeon asked how many times it had occured. I told him 6 times in one year, i thought for sure his eyes were going to pop out of his head. He immediatley said surgery was the only option. The surgery day came, and everything went great as far as i know, (i had general, best sleep ever!). When i woke up, there was very little pain. But getting up and walking around was fun, still feeling the affects of general. I was back to work on the friday (06DEC02) i had my surgery on the 02DEC02, and ever since i've had very little pain, I'm lucky don't have an open wound, my doctor suggested stitching it closed. I get my stitches out on thursday of this week, i can't wait because their really itchy at the moment!, But to pain free for the rest of my life, i'll bear it

Date:

December 17, 2002

Story

Hey Everybody, I'm the 38, WM who posted part 1 of my saga on November 2, 2002 below. Wanted to let you all know I had the surgery on December 3rd, 2002 and am doing great thus far. In between visits to my surgeon he told me he received one of his monthly medical journals in the mail and the topic was our favorite disease we are all enjoying! The article detailed two surgeons in Portland, OR. who have developed a new procedure to treat this and he was impressed enough that it swayed his decision to try this on me rather than the usual way he treats it. The article can be located at the following link: http://archsurg.ama-assn.org/issues/v137n10/abs/soa1197.html#aainfo It costs $9 to download the article, but gives a short overview of it for free at the site. Anyways, To give you all a quick overview of the surgery. It was out-patient day surgery. In at 10:30am, given a shot of valium to chill out and hit the Operating Room at noon. I received a spinal which numbs you from the waist down (an unusual sensation). I laid on my stomach and basically chatted with the anesthesiologist for a 10-15 minutes and then sorta dozed off and on. Took about an hour. Woke up and waited until I got my feeling back in my legs and went home about 4:30pm. No pain at all. I spent the next two days resting in bed or on the couch as sitting up was a little painful at first. The percodan helped. Went to work the 3rd day (Friday) and didn't take the pain meds so my brain would work. A little rough but tolerable. Relaxed the weekend and on Monday I was fine. I do have a pillow I sit on at work. I'll probably stop using that this week. Went for a checkup a week after surgery and the doctor removed the dressing and liquid skin stuff he sealed it up with. I have a sort of skin flap off to the side that flattened out the top park of my crack a bit. Apparently this prevent future cysts from forming. It looks sort of weird. I'm sure the swelling will go down a bit, but I'll probably have this little skin thing now. Hey, an easy thing to endure to prevent one of these attacks from happening again. If this is all it took to cure me, I strongly suggest you all investigate having the surgery to wipe this out and stop suffering. Ask your surgeon or doctor if they are aware of the article I referenced. The procedure is less invasive and has a higher cure rate that traditional methods.

Paul

Date:

December 11, 2002

Story

I am a married 38 year old woman with 2 children, living in NJ. After the birth of my son, 14 years ago, I was unable to get out of the hospital bed without excruciating pain. After going home, I still was in pain and could not sit. We all thought it was due to the episiotomy, and hard birth. Finally when my son was about 8 weeks old it was determined that I had a pilonidal cyst, probably brought out by the birth, and pushing so hard. I had it lanced first--never again! I lived with the discomfort and pain instead, trying ointments etc. In 1994 I decided to have surgery because it became unbearable, and I was too young to have to deal with this on a daily basis. The surgery was not done right. The surgeon seemed to know what he was doing, but decided to stitch me closed inside and out!! Needless to say, 1 week after the surgery I was totally infected and once again in unbearable pain. Unfortunately 2 months later we were moving to NY--once there I found a well referred Doctor there to take care of me. He said that a second surgery was my only option to healing this thing. I got a second opinion, and then went through with the second surgery in Jan. 1995. This time the wound was left open to heal--but so much had to excised from the area, that when it was packed with gauze, it took almost 3 feet!! I could not heal afterwards. I reached a "plateau" of healing and the Dr. could not get it to budge further. He tried all kinds of things to try and get the tissue to granulate etc. Finally after 1 year, it was starting to look like it would close completely. At this point we are thinking of moving back to NJ, because my mother-in-law was very sick with cancer and we wanted to be near her. I again lived with my pilonidal and just dealt with it best that I could. In Nov. 2000, it flared up very badly and again I went in search of help. I went to a Wound Healing Center and after months with them and numerous test, got nowhere!! I even put an IV in my chest to try antibiotic therapy! Now after researching more, I decided to go to a Colon-Rectal Specialist. Went to PA to a well respected C/R surgeon, who of course recommeded surgery! Third time is a charm right?? In June 2001 I had the surgery, it went well and I felt good after. We went through all the healing processes again--GOD BLESS my husband and caregiver!! It again took months to heal, but seemed to go faster and better this time. The wound finally closed after rounds of silver nitrate, in May 2002. Now, since then I have had minor drainage and discomfort, but it is now Dec. and I am having to use gauze again and cannot sit comfortably--I NEED A MIRACLE!!! I am willing to try anything at this point! I cannot live like this forever, it interferes with so much of my life. It could be worse I know, but can't it be better too??? Thanks for reading my story--I will update--if I can with a positive outcome, when I find one!!

Date:

December 10, 2002

Story

Hello there, I'm a 23 Year Old male who suffers from pilonidal disease. Originally it started as a cut I received to the area in 1998 while sitting on an exercise bike at my old work. The seat fell out from underneath me, not so fun, but quite humourous for others to see. Anyway, it never caused me any real discomfort until this past May, 2002. At this point, I had noticed some discomfort one day after work. By the time I was about to go to bed, I couldn't even sit down. I ended up getting the cyst cut open and drained at a local emergency room (the most painful experience of my life). I ended up getting 2 infections in the area and thus the packing was done for about 9 weeks after the procedure. Since it has finally closed over, I have had an ultrasound done of the area and there haven't been any pockets forming, which is good news, though I will eventually need the surgery to have the entire sinus removed. It doesn't bother me physically as much as it does mentally. It's just one of those things that I'm constantly worried about and I hate it. I look forward to being able to get enough time off work to eventually have the surgery. Thanks for a great place to read other people's stories. I know my story isn't an exceptional one at all, but I just wanted those reading to know that I know exactly what you're going through and the frustration of it all. Regards, Mike London, ON, Canada

Date:

December 09, 2002

Story

I am a college junior. I developed a pilondial cyst 4 weeks ago. For a whole week I walked, sat, and slept with pain. I developed it on Monday by Friday the pain was so bad. I went to the Health Center on campus and thats when they hit me with the news. The nurse told me I was born with it. I did not believe this. If I was born with it then why I am I getting at 20 years old. She gave me antibiotics and told me to take hot baths. On Sunday it burst. I was sort of scared. My housemates forced me to go to the hospital I was not going to go. At the hospital the doctor used a pair of scissors and made an incision he did not even numb the area. I was in so much pain. I have never experienced pain that bad. The doctor then gave me painkillers codeine. Codeine made me feel GREAT!! The doctor told me I have to get surgery to remove the pilondial cyst. But I hope when I get it removed it will never reoccur. I dont want to go through the pain again.

Date:

December 07, 2002

Story

First of all, I want to thank the originator of this site. I, too, was embarrassed for years and years and years about my condition. My "cysts" emerged in junior high school, not long after a painful injury while long jumping in the fascist Presidential Fitness Award at school. My mom took me to Kaiser Permanente Hospital in Sacramento, CA and basically, (being the cheapskate HMO that they are) they told me the procedure was dangerous(!), the healing process was too time consuming and painful (they pack the wound and you have to change the dressing yourself! cheap bastards!), and the liklihood of recurrance outweighed the benefit of having them removed! My advice to anyone belonging to an HMO that can relate to this story, go to a private practice surgeon! And that's what I finally did. When I moved to Alaska (where HMO's are nonexistant) from California and got a job with REAL health insurance, I saw a wonderful surgeon who told me that the procedure was NOT complicated, recovery would be time consuming and I might not be able to go to work for the first week, but the success rate (non recurrence)for his procedure was in the high 90 percentile. During my follow up visits he took care of dressing the wound and everything! And it wasn't even painful! Sometimes the wound would hurt, the only time it bothered me was in the middle of the night but I was prescribed pain killers and I took them before bedtime (that took care of that!) The only scary part of the whole ordeal was the thought of going under for surgery for the first time in my life. I thank this man every chance I get. I would build an alter to him but I am not a shrine type of person. For 18 YEARS I lived with the hell of pilonidal cysts, and the irritation of doctors that were too lazy to tell me the truth and do something about it. I HAD given up hope before I met Dr. Palmer. Now I am 7 years pilonidal free and its like I never had them.

Date:

December 06, 2002

Story

I found out a few days ago that I do indeed have this Pilonidal cyst. I am a 16 year old female adn it was almost three years ago i believe that I first felt something on my tailbone. It freaked me out, and I certainly did not tell anyone. I am a runner, and I think I may have been doing situps and, oh, did it hurt. I may have mentioned that to some family, but didn't pay any more attention to it. It was this past summer that I was having some skin problems, later diagnosed as folliculitis, that I finally just told my mom. I was sick of wondering what it was that was draining and itchign whenever it pleased. Sometimes I felt nothing, forgetting it was there, but I chose to finally tell someone. We showed the family doctor adn she said it was an infected hair follicle. Good enough. She gave me some topical stuff, it really didn't do anything. Then I went to a woman dermatologist that said the same thing, giving me more stuff, saying it woudl probably go down and eventually cease to exist. It did not, adn it wasn't until around October that my mom and I really knew we should be concerned. My grandfather, who hadn;t been to a doctor in 50 years, was rushed to the emergency room with a fever and terrible pain in his, well, butt. He is a farmer, a tough one, for that matter, and grandma knew it was serious when he asked to go to the hospital. We live three hours away, and when we got there, the surgeon told us he had a Pilonidal cyst that abssessed and caused gangrine (sorry abotu spelling)through much of his bowels. They had to cut from the back up under his legs into his thighs. We were terribly saddened. It was the staph infection that spread through his body that would ultimately wound him the most. The doctor kept saying, "I shouldn;t have had to do this. THis stubborn man never should have let this happen." He never thought it very serious the pain he felt riding on the tractor hours a day. But it certainyl caught up to him. He was left to heal slowly in the ICU, then the continuing care unit, where he weeks later flat lined adn had to be shocked three times to come back. It was a miracle that he had survived in teh first place, and then my grandma was there to alert a nurse that had just 10 minutes ago left his room. It turned out the infection had enlarged his heart, in which he receieved a pacemaker adn diffibulator, which really will not save him from his congestive heart failure. I feel sick everytime I think about my grandfather, who has such a will to live, home now only to live out whatever days he has left, all because of a freaking pilonidal cyst that he didn;t take care of. At the time all this occured, my mom and i thought mine was taken care of. But I am still feeling itching, some tenderness, adn I fear that if my grandfather had never gone through this, I could have, as well. I NEVER knew there was such a thing, I was so embarrassed when I first found mine that I could have never imagined all this. From reading this wonderful site, I am now much more educated, but very frightened about what lies ahead. I have not felt near the pain and discomfort others speak of, but I do not want it around long enough to do so. I took another trip back to my regular dermatologist, adn I felt no shame to bare my butt for the guy. I know I need to take care of myself. I am a runner, defintiely not overweight, adn a clean girl! But I know this could have gone on longer adn probably worse if my family had not suffered the way it did and there are so mainyl useful sites on the internet like this one. I am going on tuesday to a surgeon and I feel I am better educated now to get an idea of what he plans to do. I would like to just get it removed, but it certainly scares me and I dont look forward to a recovery period. But I know that I may be saving my life. Or, at least, my grandpa hopes everytime he reminds my mom to take care of my cyst. He wants it done asap, obviously. Please pray for grandfather, my family,and I through all this, and hopefully I can get this taken care of. I believe this "disease" shoudl be more spoken, we could be saving more people from a life of discomfort adn shame that need not exist any longer. THank you for this site, I hope all goes well. And remember my grandfahters story, and know that the first step is telling someone, unlike what he adn i did. I can not believe it took me over two years to tell someone. I am both glad and afraid that I now know what it is, but can only pray it all works out. -M

Date:

December 05, 2002

Story

I had my surgey about two weeks ago(Full excision). Everything seems to be going well. The first couple of days after the surgery are difficult but bearable. After those days your life will get back in order, with the exception of the wound packing and some slight discomfort sitting for lengths of time. Don't believe all of the horror stories, but trust me it is no cake walk surgery. Also, don't be freaked out by the wound when you start to pack it yourself. It looks alot worse than it feels.