Personal Stores Archive #11

Personal Stores Archive #11

Stories from Oct 1, 2002 to Nov 30, 2002

Date:: November 30, 2002

Story

Hello, I am a 32 year old man and I thought I would share my experience with others as well. I can't seem to find the webmasters name, but many thanks to you for all your hard work, this site is a great resource! I live in Fort Lauderdale and the experiences with these doctors were at North Ridge Medical Center (thier slogan= "apathy and medical burnout are our specialties!") I have had a pilonidal cyst for over two years now, but like others I too thought it was nothing serious, perhaps I scrubbed my bum to hard with the washcloth while showering, or maybe I scratched the top of my buttcrack with my fingernail while showering, at any rate I blew it off. I also stared having abnormal bowel movements around the same time, such as one every 3-6 days! and the amount was small and it thin, like ribbon. I thought perhaps I had a gastoentinestinal condition, so I sceduled an appointment with my doctor who referred me to a gastroentestinal specialist. The specialist sceduled me for a colonoscopy and gave two bottles of clear white liquid laxative to be taken over a period of 2-4 hours ith a gallon of water! I let him know my concern that I might not be able to pass this out as I had taken many laxatives and eaten bran cereal, repeatedly for the contipation (the itching and oozing I could almost live with)and still had no bowel movement for sometimes 6 days (sometimes more) and it was a very small amount that would come out when I finally had one-, very thin and ribbon like- The bran and laxative caused tremendous gas, bloating, cramping and sharp very painful abdominal pain...so I stopped eating it and taking laxatives. The specialist assured me "this laxative" would 'clean out an elephant' and all would be fine - ha - I took the laxative between 8-11 pm the night before the procedure and slowly got the entire gallon of water down too, the doc said it should take effect in about 2 hours and I couldn't wait as I hadnt had a normal bowel movement in quite some time and I needed the relief. At 4 a.m. still nothing, I ran up and down the block trying to motivate it and nothing, The pressure and pain/cramping was EXCRUCIATING!!!! Finally around 5 I went to bed, in INTENSE pain. Around 6a.m. I finally went, but I know there wasn't a gallon that came out, not even half a gallon, so I kept trying but nothing more produced. I had to make the appointment at 8, when I saw the doc I told him exactly what happened. I felt I was still full and I was still in some pain from cramping- he didn't seem concerned. Alrighty then! I was to be awake for the procedue and given a mixture of valium and something else (I forget, is been over a year ago) , I was knocked out instantly, partially from the exaustion of a painful and sleepless night prior. When I came to in the recovery area, the doc and his assistant were pissed! the doc just said very condesending voice "Well... you're cleaned-out NOW!" .. then he asked if I took the laxative as instructed. HELLO , I told you what happened and you didn't seem to care! He sai "well we didn't find anything a all, you're fine. (the $#%#%#) So I told my regular doctor about the experience and she gave me antibiotics, which helped. during the last year and half however the gas, cramping, intermittent drainage, bleeding and constipation persisted, but due to my scedule I lived with it (and my bad experience trying to get it diagnosed). Until two days before Thansgiving, it then became so sore that I ouldnt get up without the intense pain were familiar with, I couldn't lie, sit, everything hurt and I had a fever. I went to the E.R. on the day before Thanksgiving and very eloquently and vividly explained ALL that had happened over the past two years, including the colonoscopy, etc. because I KNEW it was all related and revelant, but Istill had no diagnosis. Once again, the doctor seemed rather "yeah whatever- thats nice" to what I was saying. When he took me back to the E.R. room he was convinced I had a hemmoriod, so he threw on a glove-lubed up with ky , shoved his finger in my anus and started digging around! The pain was so intense I though he had a scalpel in there not a finger (except it was more of hyper-tender, sore pain than a stabbing) I almost took his head off with my foot! I couldn't believe he didnt put lidocaine in there or something! after his exam I leaked copious amounts of fluid and some blood. He suggested I see a specialist for a colonoscopy. WHAT!! bite me!!! (agin he obviosly wasn't listening) He mentioned he thought it was possible it was a Pilonidal cyst/abcess , he didn't feel a hemmoriod the short time he was examing me, He sent me home with Darvocet, Cippro antibiotics and Anusol suppositories. I called my mother and she informed me that my dad had a Pilonidal Cyst removed in his early twenties, so I went online and found this site! Thank you so much! now I realise what idiots I have had the misfortune of seeing as doctors! The Darvocet helped somewhat, but by Thanksgiving night I was taking two at a time. The day after thanksgiving my doctor, and several urologist and surgeons I called were still not in, the fever was still there and the pain and sweeling too, and now I could feel it sticking out about a 1/4 inch from my rectum all puffy and ripe. I again went back to the same Urgent Care (translation= We Don't Care,leave us alone so we can golf) Center at North Ridge Medical Center on the day after Thanksgiving, I called first an the nurse thought that since the fever was still there and I had been on the cippro two days now, it was a good idea. When I got in to see the E.R. doctor I had the worst experience I have ever had or even heard of from a health care professional. The E.R. doctor literally stormed in my room, slammed the door and said "Why are you here??" in a tone as if I were hi 16 year old son at the police station! He then proceded to literally verbally abuse my by saying "I see you were just here two days ago.. what do you think we can give you a pill and everything just goes away!?!?" I tried to tell him that I just wanted it lanced for relief and he wouldn't even let me talk, he kept interrupting me! He said "wait a minute Im not done, I also see you complain of constipation, well the Darvocet causes constipation and he threw a copy of the release papers the doctor I saw two nights ago within two inches on my nose! I was beyond insulted and absolutely shocked! It was bad enough the first E.R. doctor didnt lance it to relive my pain, now I get a doctor who is mentally unstable! Again I tried to tell him "why I was there, as I wasnt even given a chance to answer his origional question, and he said "Well let me tell you something, I dont DO Pilonidal cysts." and he made a face like h would puke, I raised up from lying down on my side, pain and all, looked him dead in the eye and said "Fuck you, I'm leaving" to which he actually said "Are you saying you don't want treatment?" I said "Not by you, not if you were the last doctor on earth!" and I left. I am stil reeling. I can't believe the incompetence and apathy I have enountered, and now abuse on top of it! I am a very quiet and sheepish patient, especially when I am in pain, o this cannot be excused with bad patient behavior. I am filing a report with North Ridge Medical Centers administration offices Monday. I cannot wait until Monday when I can contact the surgeon and get this removed! I m shocked after reading story after sory (even on other related websites) about E.R. doctors, familiy practioners, etc lancing the cyst to relive pressure, now that I have read this, I am just in shock at the way I was treated. I cannot believe that two years ago I could have been diagnosed, treated, had it removed and been long since healed by now. I have the issue. At any rate I am keeping optimistic that the surgeon will at least pretend to care somewhat and be somewhat competent. It can only get better now because now I am an informed and more educated patient. Again thanks for a great site! I will keep you posted as to what happens!

Date:: November 28, 2002

Story

As an aspiring Musician in a Marching Band, this obiously wasn't the best thing to be told that I have, me thinking that I'm the only one, and it's like the plague or something. My cyst had drained on my under-garments and basically became so irritated that it had started to bleed every day, I was soon told that i was diagnosed with Polinidal, then finding out it was something that had a chance of recurring after surgery, I was not a very happy camper... Thanks to a good doctor, (Dr. Kline, very cool, I was his last patient before her retired...I wonder why...) it was removed! But I found out it was HUGE, so my chances of regaining this thing was even higher, good news though, it's been about 2 years since surgery! And it has not come back! but I'm hoping for a good future! It's also good to know that there is a site dedicated to us! Thanks alot!

Date:: November 27, 2002

Story

How nice to find a webgroup that shares in the same embarressing experience that I have....I am a 26 year old male, I first found that I had a Pilonidal sinus almost one year ago. At that time I was completley baffled as to what the hell was going on down there. I first noticed a problem one day when I found what felt like a dimple at the top of my bum crack, I hadn't noticed it before so it had me wondering for a while. Within a few weeks I had noticed a small lump down lower in my bum near the anus that was slightly tender and puffy, I felt around it and thought it may have been a stray pimple or something so I pressed on it a bit and with a little pain it started to release an offensive smelling discarge...I guess I shouldn't have done that... I knew I had to see a doctor, but the whole situation was so embaressing for me I just couldn't do it and thought I'd wait and see if it would clear up on its own. It started to discharge on its own over the next 2-3 months and it was making a mess of my pants and I was getting really self concious whenever I sat down or somebody was behind me, for one I worried if it had soaked through the guaze I had packed it with and secondly I always worried people could smell it. I finally went to see the doctor and 2 of them just said I had piles. After a number of doctors had their fingers up my bum and an internal examination later I decided they didn't know what they were talking about and changed clinics. The next doctor knew what he was looking at straight away (and didn't stick anything up my butt), he referred me to a surgeon at the Royal Melbourne hospital who was excellent. He explained what it was and told me that the best course of action would be to cut it out. He also said that there was a chance that it would come back again sometime later down the track. The surgury was only one day in the hospital and I had homecare for the next 2 months. The actual wound was quite large, but it was not too painful, it only really hurt sitting down, getting up again and bending over. After the first 2 weeks my wife was doing the dressings for me every 2nd day, and that helped a lot. Well one year later and its back in all its glory! first I noticed the tell tail dimple and now the lump underneath. But this time I will not be messing with it. I will be going in to see the doctor this week. All the nurses that visited me kept telling me that it was not uncommon to have. I had never heard of it before at all, but today I told a work mate in confidence and it seems that he also is suffering from it for the first time as well! I hope that this will be my last time for a long time....but from reading other peoples experiences and knowing how soon I got my second, I am not too confident, but at least this time around I am prepared and know I am not alone. Ash

Date:: November 25, 2002

Story

Here is my story. I had a pilonidal cyst removed 40 years ago. I never knew about so many problems until I read this board. At about age 15 I began to have pain in my rear area. At age 16 it finally became so bad and large I couldn't sit. I saw my first doctor, who lanced it. This continued for about two years.The doctor would lance it, puss would pour out, I would go home, it would heal over and then we would redo it again. I wasn't born with a drainage place in the cleft, so I do not know if that is a plus or minus. It became a little worse each year. I changed doctors. When I was 18 years old I had surgery. It was so large by that time, my surgeon explained it was like a large butterfly infecting the hip area. That surprised me because the pain was all in one large swollen area. He showed me his hands spread out to indicate the size it had spread in my hip area. I really wanted it removed because I was so tired of dealing with it and it's growth. On the day of surgery, I recieved a spinal and a light medication to make me be unaware. The medication wore off and I woke up before surgery was completed, and began conversing with the person checking my vital's. He informed the surgeon I was awake, they wanted to know what I could feel, the spinal made it feel like touches on my rear area, but no pain. (No pun intended.) I was packed with gauze and taken to a room. The next morning when they removed the gauze there was so much of it, a large green metal trash can couldn't contain all of it. Next I went to the bath, so much blood came out a nurse's aid actually fainted when came back and saw me in the tub of seemingly all blood. I went home and my mother told me how huge the area was. She packed me and I bath sat. It healed beautifully and I never had any more trouble. I never looked at it, after surgery. It was just a tremendous relief. I have an enormous scar and great praise for my surgeon. I am a female. I have always had almost no body hair. I can shave my legs once every 10 days, and be fine. I know each case is different and every one heals differently but I would think it important to get the toxic waste out of anyones body. Will it leave a scar? Probably. Will it take a while to heal? Certainly. Is it worth is? You bet. As for something that might be a genetic flaw. I have the following on my mothers side of the family. A great great uncle born in 1861 had one removed when he was in his 80's and an uncle had one removed when he came home from WWII. Then there is me. That is all from a really large family. From my father's family no one has had one, as far back as I have checked. If you have one, don't be hesitant to have a doctor help you. If you are not comfortable with one doctor, try another. I was so much healthier after my cyst was removed. You could be as well.

Date:: November 25, 2002

Story

I'm a 43 year old male, residing in Maryland, and I'm new to this whole pilonidal cyst thing. I vaguely remember my father (who passed away in 1988) having some sort of trouble with it when I was in my teens, and I remember my mom mentioning something about dad having "some sort of cyst" and how she had to help him to pack in some sort of "gauze wick" or something, into his lower back, just above his butt. Whatever it was, it sounded pretty gross, and I didn't want to know. Well, through the years, I've noticed some vague kind of "twinge-pain" down there - a slight, but focused, itching pain - right at the top of the gluteal cleft, and particularly duing showering, when I'd get maybe a bit too vigorous with the soap. In the back of my mind, and with dread, I figured that whatever was causing it was probably what my dad had, and I figured that if I could just shift my posture just right, or through mental willpower, I'd "re-seat" whatever it was that was in there, and out-smart it. See, my dad didn't know how to do this, when he felt HIS little twinges of pain down there. It seemed to work, and I never really gave it much thought. All of this was always kind of in the back of my mind. Then, around 1997 or so, my younger brother, Ed, who lives in Texas, came down with a case of it. He apparently went to a clinic, and the treating physician inserted a needle into the cyst and drained off a good deal of fluid. The doctor told him to keep the area clean, and to replace the gauze pads twice daily, maybe with a little Neosporine, for 2 weeks. He did so, and has had no problems since. But I recall a vague sense of doom at the time Ed told me about his experience...this weird pilonidal cyst thing seemed to be just the sort of offbeat thing that would run in families, and over the intervening years I kept noticing this kind of tight, itching, focused, intermittent twinge (that really is the only word to describe it) during bathing, or even during sitting. Well, IT HAPPENED. Last night. November 23, 2002, around 8 PM EST. I was lying in bed, flat on my back, surfing the web, and I had this very PRONOUNCED sensation of itch/pain, right at the top of the gluteal cleft. I went into the bathroom and grabbed a wad of toilet paper, to see what was going on. As I pulled down my pants and underwear, I noticed a slightly bloody, straw-colored stain in my underwear, right where the area in question would be. I was FLOORED. I gently blotted some toilet paper into "The Region", and it came away with more bright blood on it, and more straw colored fluid. I KNEW IT, THEN. I immediately checked myself out in the mirror, and saw what looked like an angry, quarter-sized pimple, or boil, that looked kind of raw. Whatever it was, it looked fairly superficial, but I knew it was a pilonidal cyst. And it was itching, something fierce. So, I grabbed another wad of toilet paper, and SOAKED it with 70% isopropyl alcohol, and applied it directly to the area. There was immediate relief from the itching, and, of course, some burning sensation, but I knew it could only help. After applying more isopropyl to the area, washing it down, slightly scrubbing, I then dried it off. I made sure it was almost completely dry. I then folded some fresh gauze right the area, to help draw away any further drainage, and changed into some fresh underwear. I repeated this procedure about 3 more times through the night, on the hour, noting any more staining on the gauze. It was decreasing. By 2 AM, there was no itching, and no more staining. It is now 7:50 PM, Sunday, November 24th, and there is neither pain nor itching, and no staining whatsoever, and the wound looks more pinkish than red in the mirror, and much less "angry". I'm thinking I've got it licked, for now. I have little doubt that I'll have a recurrence down the road, but I'll be READY for it. I think I've got it down. I have an "SOP"! ("Standard Operating Procedure"). If this thing rears its ugly, congenital head again, I'll really hit it hard, with the 70% isopropyl alcohol. Hell, I'll go to NINTEY PERCENT isopropyl concentration, and every half hour, too. ANYTHING to avoid the surgical horror stories you guys have endured. I might even be content to live with this regime, maybe once every month or two, the way that one woman on this website did with hers, for nearly 20 years. Maybe I'm lucky because this is only my first time. Anyway, wish me luck, and if any of you out there want to try this approach, let me know if it works. It seems to be working for me. I am NOT a doctor, and I am NOT endorsing this method of self-treatment, in any way. Good luck and health to you - psdoyle

Date:: November 22, 2002

Story

Hi my name is Tim I am now 35yrs old and I've had a polynidal cyst since i was 16yrs old. At that age back in 1984 i was very very embarresed about it. Basically i use to feel a small lump on the end of my tail bone like all of you guys and sometimes it was so so sore other times not sore at all. One day whe nit was sore i went to the toilet there was blood/puss on the toilet paper.... at fist i thought it was piles or something. I built up the courage and told my mum, she told me it was ot piles and so off we went to the hospital as it was like 9pm on a Saturday night. My mum said there was the lump and 3 micro scopic holes just below where it was discharging from. We told the doctor this and he had a look he called in another doctor and they explained it was polynidal sinus cyst. Yeah like that meant alot to a 16 yr old all i knew was the top of my bck side was so sore. They explained what it was both my mum & I felt better that it wasnt anything worse. They put me on antibiotics and we scheduled an appointment with a surgeon. We met with the surgeon and a few weeks later the operation. I couldnt tell my friends that my slightly hairy ass gave this to me it was so embarrising !!! The operation is rather simple the recovery was missery to say the least. it took me two months to heal, I use to get re-packed 2 times a day. It was 18 years ago but I remember it all so vividly the pain and discomfort. After the healing all was ok for a about 5 years about once a week in the shower i use to feel for a lump... one day it was back and the little sinus holes came back aswell only 2 this time !!! Following this I've only had 2 major inflemations one about 2 years ago with minimal discharge the doctor gave me antibiotcs and it all settled down. The latesr was exactly a week ago. I went to the doctor the cyst was the size of a broad bean, within 3 days it was the size of 1/2 and egg. Very Very Very sore the antibiotics took almost a week to penetrate the cyst. My wife sore it dicharging abit gave it a squeeze and it ouzed puss like anyting. She squeezed it every 15mins over about 4 hrs and we got most of the crap out of it. The antibiotics were working. A week has gone by and its all settled down and its about 1 1/2 its normal size but no pain etc. I discussed having it removed with my doctor but as you all know chances of it comming back are very high for me it came back infact. My doctor recommends treat with antibiotis due to the healing process, i tend to agree but if n alternative surgical process is developed i want to be a guinea pig as long as im out of duty for no more than a week. Im so glad i found this site i now know im not alone with this nusance polynidal cyst problem. I sincereley hope you can all cope with it as for me when i was 16-19 i was very concious about doing heavy duty sport, excercise etc with fear of the wound opening etc. Foe those seeking treatment all the best I hope you dont have a reoccurance and for those like me i hope you manage it well. Im from Australia I would like to hear of any alternative treatments that may exist in other parts of the world. regards

Date:: November 20, 2002

Story

Hi, I had this cyst for roughly 8 years. It flared up and ruptured about once or twice a year and other from that didn't bother me much. It only really bothered me when sitting in uncomfotable posistion for a long time (ie an airplane). Recently it ruptured after an uncomfortable trip to Vegas. I still thought nothing of it, and assumed I was just a freak. One night I was listening to Loveline (a syndicated radio call in show)and a listener called in with the same problem and asked the doctor what this was. The doctor said it was a Pilonidal cyst and fairly common. Now I had a name. I went home and searched on the internet for it, and found this sight. I then went to my doctor and he recomended surgery. I went for the surgery on October 31st and was out of work for a little over 2 weeks. Because I delayed in having it looked at the doctor said it branched out 3 different ways and he had seen scars from past infections. I suggest not living with it like I did, and see your doctor as soon as possible. Rob

Date:: November 20, 2002

Story

My 17 year old daughter took a fall playing basketball three and a half weeks ago, and our lives have been in turmoil since --as a pilonidal absess developed. After going to the doctor as we could feel this lump growing and the pain was terrible, our GP sent us to a surgeon the same day, and the surgeon put her into hospital straight away onto antibiotic drip to stop it getting any bigger and operated the next morning. All this happened so quickly, we were all stunned. My daughter is the bravest kid in the world and took whatever came her way assuring me that from the moment she woke up after the surgery it was better than before. She is two weeks today since the surgery, still having the nurse come every day to pack it, but she is still smiling and says that the pain after the surgery is nothing compared to before and that the best thing was that it was done quickly and she would really recommend anyone to go for the surgery because it is nothing to be scared about, and she's glad to be on the other side. The only problem for her, of course it has been embarassing to have something on her bottom. I have found that lots of hugs, kisses and ice cream have helped her to heal much more quickly than expected and that her fantastic attitude and beautiful nature have made it much easier for those of us worried about her. Please contact me if you would like any encouragement or advise or info about what we have been through. My email is helenw59@hotmail.com Good luck to you all Helen.

Date:: November 14, 2002

Story

hi there...19 yr old female in alot of pain right now. just got back from the er after having my packing changed yet again. the doc i had finnaly told me the name of this thing and i decided to look it up. i was soooooooo shocked when i found this site. i never would have guessed this was such a popular problem. i first noticed the absess back in april, i got to the point i could hardly walk so i went to the er. doc i had sent me home...said it was a bruised tailbone gave me pain killers and left. the meds he gave me made me extremely ill so i went back to the er about 2 weeks later...and thank god i did. the doc i had that time looked at my bottom and told me it was not a bruised tailbone, it was an absess and he said it needed to be lanced asap as it looked like it was ready to pop. so he cut it open fairly deep, packed it and sent me on my way. had to go have the packing changed every day for about 6 weeks and finally the nurse said it was healed and i had no need to come back. well here it is 7 months later it never healed properly is wht i've been told and this thing had flared up 7 times...fun stuff. every time i went to the er each doc said something diff about what i had and waht to do for it. finally the last doc told me i had to have surgery to get rid of it and sent me to a surgen. my consult is not until jan and i was told if it's flared then i may have to wait a month or more until he'll do the surgery for me. i've been reading the messages posted on her and now i'm terrified to go see him. most cases i've read, u poor poor people have been dealing with this for years now and nothing makes it go way. so now i'm starting to think why bother. but then again it may help right??? i've been trying to go see the surgen sooner so i don't back out, but the only one in my area who deals with these things is booked until jan...so i guess i wait. i guess i just wanted to vent. so sick of talkin to people about this who hane nooooooooo idea what it feels like. my father keeps pushin me to go to work..and stay the whole shift, and i've tried to explain the pain but they don't get it. i started a new job about 4 months ago and have missed about 8 days cuz of this even though i should have missed a lot more but they wouldn't let me take the time off. i work as a bill collector and have to sit in an office chair for 8 hours, i've treid to explain it to my boss but he just tells me to stand which doesn't help either. i just don't think i can last through this till jan with it coming back every 3-4 weeks. does anyone have an idea how i can explain this thing to people who haven't dealt with it so maybe they can understand. gonna get my dad to read some if this tomorrow so that may help him. oh and may i ask what pain pills u found to work best? can't take tylenol 3's...been on perk which worked great but they won't give them to me now cuz docs don't think i'm in that much pain...now i'm on talwin which helps a lil but mostly just makes me tired. just curios if there's something else i can ask about cuz i have to go back in 2 days anyway to get "stuffed" again. woohoo me :( anyway ranting now...sorry... thankx for letting me vent :)

Date:: November 14, 2002

Story

I'm a 18 years old male from NZ who has already had two operations to treat Pilonidal Sinus's which took me out of school for about 2-3 months each. This greatly affected my school work and made it hard to complete school with a decent grade. The worst thing was, I couldn't tell me friends about it as they would have laughed at me about it so I had to make up stories. Now I'm at Polytechnic and finding hard because I don't to fall behind if I have another attack and the wounds seemed to be prone to sweat rash. Anyway thanks for listening to me story Bye

Date:: November 05, 2002

Story

Wow, Who would have thunk I'd be posting here, but then again, you all were feeling the same way too. Well, I'm in between attacks and the surgery. I'm a 38 year old WM trying to figure this thing out, get over these hellish experiences and was happy to find this site. I never had a problem like this until, yes, 9/11/01! I went out to dinner discussing the days horrific events and noticed I kept feeling a pain and shifting how I sat. Next day a little worse. What I thought was a pimple seemed too deep. On the 3rd day it hurt like hell. The 4th day I was showering and washing my rear with the wash cloth, I looked and noticed it was all bloody and yellow. The pain immediately started to subside. A small bloody "hole" had formed. Shocked at the events, I kept it bandaged and covered with Neosporin as it drained. It about 2 weeks it was healed up and forgotten. Fast foward a year later to about 9/20/02. This time it was 10 times worse and just at the top of the cleft right on the tailbone and growing by the day. As I have read here and can attest, this was excruciating pain and by 9/24 I could barely walk or get into a car to get to the doctor. I'd sooner just have someone hammer my thumb. My regular doctor immediately knew what it was and lanced it. It hurt so bad doing this I started seeing blue stars in my vision-even with a local. Once he completed the procedure, the pain was reduced by about 50%. He put me on Keflex antibiotics for 10 days, I took my baths, kept my butt clean and he removed the drainage tube in 48 hours. Everything healed up nicely and I thought I was over it... A few weeks ago I got hit AGAIN, so back to the doctor's on 10/29/02. A far less serious flare up, I believe the lanced skin broke open and it began draining on its own. I got out as much stuff as I could which again relieved the pain. My doctor took one look and sent me upstairs to a surgeon saying 3 strikes and it's surgery time. So the surgeon took a look and agreed it was time for a permanant end to this. I'm currently half way through another 10 days of Keflex, but doing double strength at 2000mg/day. Feeling better, still a little sore, but tolerable. I'm healed up but can definately feel two distinct bumps still there. So I was told to finish up the antibiotics and feel as healthy as I can and in another week or so, make the appointment to get this surgery. I'm not sure what type I'll have, but he did mention stitches, so I'm assuming the closed type. I'll be sure to report back and let you know how it's going. As frustrating, painful and embarassing as this is, I'm remaining positive and at least for now can laugh about it. I mean who wants to shave their butt???? Not me.....

Date:: November 03, 2002

Story

Finally a happy good story to share. First off I want to state that pilonidal is curable. I can say this after much trial and error. When my son was age 17 (he's 21 now) he had the closed procedure done. It was done by a colon/rectal specialist. It never healed properly (or was fully excised at the time) and he had lingering problems for many months. The surgeon always insisted it was fine and would heal. When it didn't I insisted to the surgeon about doing something (my insurance restriced me from using another MD so I had to deal with him and he did have good schooling and creditenials, but in looking back I don't think p/c really interested him and he probably just wanted to take out guts, etc). Anyway, his suggesion was having a skin graft put over the area. I won't go into all the detail, but it involved a two day hosp stay and utilization of VAC dressing. It held up for approx 6 months, but the problem manifested again. My son is age 20 by this time w/two years of college completed and wants to enter the military...but was rejected because of a reoccuring (or initially never fixed the first surgery) pilonidal cyst! I took him back to the surgeon and the surgeon said he didn't have a p/c! I took him to the plastic surgeon who did the graft who stated by son did have a p/c, plus our family MD. Not wanting to believe he had a p/c I took him to a wound care center (by this time money was not an object and I would do anything to help my son find a resolution. The wound center confirmed he had a cyst and gave the name of an MD to use (who by the way was not a colon/rectal specialist). By this time I found this WEB site with all of its wonderful information. My son had an open procedure done this time. The surgeon was very good, but not leaving anything again to chance after the surgery I had him follow up for the healing with the wound care center. Eventually the wound fully closed and my son passed his military physical and entered the military in June, 2002 and went thru the rigors of basic training with no problems. As of this date, the site is still fully healed. My advise to fellow suffers is to have the open procedure, baby the site for twenty-four/seven, dressing changes and packing are key, follow this WEB site and don't rely soley on the surgeon for monitoring of your wound care. If, after 10 weeks, it is not completely closed do yourself a favor a find a wound care center (ususally affilated with a hospital) and have them assist you. It is curable and you can get on with your life! God Bless!


Date:: October 18, 2002

Story

I AM THE MOTHER OF A BOY WHO IS 20 AND A GIRL WHO IS 18. MY SON HAD THE SURGERY WHEN HE WAS 16. WE THINK HE HAD THE CYST FOR YEARS WITHOUT TELLING US. I KEPT THROWING AWAY HIS UNDERWEAR AND I KEPT ASKING HIM WHAT WAS WRONG AND HE SAID NOTHING. AFTER A COUPLE OF MONTHS AND FINDING SEVERAL PAIR IN THE TRASH I CALLED A DR. THE NURSE TRIED TO TELL ME THAT TEENAGE BOYS DON'T WIPE VERY WELL SO THAT WAS PROBABLY ALL IT WAS. THE DR. HAD NO IDEA SO HE MADE AN APPT WITH A DERMATOLOGIST, THE THE DERMOTOLOGIST MADE AN APPT WITH A SURGEON. THIS WAS IN AUGUST OF 1998. HE MADE THE APPT FOR DEC SO HE COULD HAVE IT OVER CHRISTMAS BREAK. IT WAS QUITE DEEP AND WE HAD A VISING NURSE FOR A WEEK TIL I TOOK OVER. HE HAD MANY WHIRLPOOL TREATMENTS AND SILVER NITRATE TREATMENTS. IT WAS ALMOST A 9 MONTHS TIL IT WAS HEALED. THEN 1 YEAR AGO MY DAUGHTER TOLD ME SHE IS HAVING PROBLEMS. SHE HAS JUST BEEN DEALING WITH IT AND DOING THE ATIBIOTIC THING AND WE FINALLY MADE AN APPT FOR THIS DEC 13 FOR HER OPERATION. HERE WE GO AGAIN. HOPEFULLY HERS WON'T BE AS LARGE OF AN INCISION. BUT TO TOP THAT OFF MY SON IS HAVING A FLARE UP AND WENT TO THE SURGEON LAST MONTH. HE DOESN'T HAVE INS. RIGHT NOW SO HE IS JUST TAKING THE ANTIBIOTIC AND WILL HAVE TO WAIT TIL HE HAS INS. THIS HAS NOT BEEN FUN FOR ANY OF US BUT HOPEFULLY THERE WILL BE AN END TO OUR SAGASO THAT SOME DAY AND WE WON'T HAVE TO TALK ABOUT THEIR BUTTS ALL THE TIME. OF COURSE MY HUSBAND SAYS THE PAIN IN THEIR BUTTS COMES FROM MY SIDE OF THE FAMILY. PAT

Date:: October 13, 2002

Story

Hello im a 15 year-old boy, and I found out I had this disease 2 months ago. I did post my story up here a while back and my update is the hole is almost healed. All it looks like is a scrap. I'm glad this is almost over. But now I know that I have to do a lot to keep it from coming back! I really hope it doesn't come back because I don't want to go through all the hell ever again! For everyone else who is starting to go through this, pain is going to be your best friend. So If you don't like pain it's going to be rough. Good Luck! :) --AJ

Date:: October 11, 2002

Story

To anyone considering cyst removal: All I can say is, do it! I have lived with a pilonidal cyst for almost three years, during much of that time I didn't know what it was, just that it was embarrassing. Almost a year ago, I finally asked a doctor about it and was immediately diagnosed with a pilonidal cyst. The doctor recommended that since I wasn't experiencing any pain, that I just live with it, since the surgery was "painful" and "these things have a high rate of recurrence." The cyst just continued to get worse with time. Instead of draining once every few weeks, it became a weekly, and eventually a daily problem. It got to be painful too. After my wife found this site, I began to question the assumption that surgery wasn't worth it. I contacted a colon/rectal surgeon in my area and he confirmed that the surgery actually has a good success rate and would probably be the only thing that would provide any real relief. I had the surgery one week ago today. Obviously, I can't speak to its long-term success... and I am keeping my fingers crossed. The doctor said that as he cut the cyst out, it was much bigger than he originally thought, so I have a rather large wound (4 inches long, about and inch and a half wide and a full inch deep in places). Even with that size of wound, the surgery has been only marginally more painful than the cyst itself was. The very next day I was sitting up and working on my computer, for most of the day! I returned to work witin four days and could have returned in two, but I have a lot of sick time to burn... I only felt the need for strong pain medication the first day. For several days after that, I began to use it only because I thought for sure that it would hurt. After all it LOOKED like it should hurt! Finally, convinced that it wasn't going to start hurting, I stopped taking anything stronger than napricin or motrin after the fourth day. I will say that last night as I changed the dressing, the gauze stuck to part of the wound. That hurt! And I did take the Oxycodone afterward. This morning it was a bit more tender than it had been, but still easily manageable without medication. I will post a follow-up in a few weeks, as the wound heals. But so far I can definately say the surgery is far preferable to living with a pilonidal cyst; even if it comes back, I'll have the surgery again. BTW, if you live in the Kansas City area, go see Dr. Bruce Graham, he is excellent. A Note From the Wife: I personally wasn't that impressed with the Dr., considering the chances of recurrence and the importance of taking care of the dressings, he wasn't very thorough with his explanation of wound care. Luckily, we had a lot of information from this web site. Also, I was somewhat unprepared for the size and scope of the wound. I don't think I am particularly squeamish, but looking at the wound the day after surgery was a suprise. I would say it is 4 inches long, and more like 1.5 inches deep and 1.5 inches wide. I would definitely recommend any caregiver check out the pictures of pilonidal cystectomy wounds, just to be prepared. Overall, everything is going well. I hope it continues. We will probably post a follow up in a few weeks.

Date:: October 08, 2002

Story

Hi, I'm a 15 year old girl that just got told that I have pilonidal disease. I was also told that I have to get surgery done. I decided to hold off on the surgery until after the school(ughh, 7 more months of this terrible thing on my butt!) anyways, I have been having problems and have been feeling a lot of pain in that area for about a year. I finally told my parents about this about 1 week ago. That was the best choice for me. They have been so much help and are helping me through this. I guess I was just really embaressed about the whole thing being wrong with my butt. If there anymore teenagers out there, all I can say is suck up and drop your shorts, it has already helped me. I'll try to keep you updated and let you know about my surgery when it does finally happen. Thanks for having this site. I has really helped me as an insecure teen with a bump on her butt looking for answers!

Date:: October 05, 2002

Story

Had my cyst removed in July '85---by a plastic surgeon who himself had a cyst removed. Had my op done under general, the worst part for me was how messed-up the anesthesia made me feel the day after. I was discharged once I got my appetite back, went home, wasn't allowed to sit... I did a LOT of kneeling. After a week, my other doc (the GP) removed the sutures, found no complications, and the wound stopped smarting 2 weeks post op. I sometimes had nightmares that my cyst had come back, but am happy to report that it has shown no signs of doing so. I took it pretty well for a 17-y.o. boy, mostly because the idea of being cyst-free seemed like a real treat... Dr said he ended up having to remove a much larger cyst area than anticipated. Folks, by all means, opt for cyst removal surgery, even if you think it will be scary and inconvenient for a while... I guess the key is to locate a surgeon who removes many pilonidal cysts each year, and is careful not to leave any bits of cyst wall inside the wound. This is probably why I was able to get away with closed versus open incision post-op... I've heard recurrence horror stories from others who've had bits of cyst remaining inside their incisions. BTW docs in those days believed pilonidal cysts were practically non-existent in women... we know better now.

Take care, Marty 17+ years cyst-free

Date:: October 03, 2002

Story

I never had a problem with my cyst so I have no idea what kind of pain is involved when it flares up. I had had it for about two years when I decided to just have it removed before something happened like infection or flare ups. After the operation (we had the surgery where there is no stitching, just an open wound) there was weeks of packing gauze into the wound. At first it was very uncomfortable although not too painful except when the gauze was removed as it stuck in the wound. I had it done on the 29th of August and we are still packing, though I expect any day now to be finished. I recommend getting this done as soon as you know you have one to avoid problems. The nurse said that since this operation was the first thing that was doen with it that the chances of reccurence were lower. Also please keep in mind that it is a 4-6 week recovery so plan accordingly. I only took off 4 days from work, but I am an office worker so there is not a lot of physical labor. Keep that in mind also.