Personal Stores Archive #20

Date:

May 31, 2004

Story

I have had a Pilonidal Cyst for about a year now. I am only 16. I had no idea what it was until i went to the ER in the middle of the night becuase i could not sleep. I was just expecting the ER to give me pain medication, but i was wrong. They had to perform the procedure right then and there. Let me tell you, it was the worst pain of my life. They tried to num the area before he made the cut, but that did not work becuase there was no blood supply. That was about 2 weeks ago. There is gause still in the wound, and i have to get it changed every couple of days. I also was put on medication and i have to wash twice daily. They say now I might have to get it surgically removed becuase the ER might have not removed some tissue that makes it come back. I am in fear of my life right now, i hope that i dont have to get surgery, becuase i am very scared and i am very active. Pilonidal cysts are scary,

Date:

May 30, 2004

Story

I had a pilonidal cyst about 2 years ago, i found out in the emergency room that i had one. i had no idea what it was or why it was there, but the doctor in the er basically told me that i needed to have "surgery" to remove it. i went home that day still in horrible pain, and i knew i would not be able to wait weeks or even months to have surgey. so, i went back to the er the next day and explained to everyone that i couldn't take the pain anymore and they had to do something to relieve my pain. the doctor said they he would just "drain" it but i still would have to have surgery in order to remove the entire cyst. i agreed. the doctor drained the cyst and packed it with alot of gauze, the next day i had to have all of the gauze removed, and the pain was gone, even though i still had an open wound, the pressure was gone. after it closed up, i was fine, but in the back of my mind i heard the doctor telling me that my chances of getting another one was very high, so i made an appointmet with a suregeon to have it completely removed. june of 2001 was when i had my surgery, and let me say that was the worst surgery i have ever had in my life, and i'm not talking pain.... it was a nuisance. i was in a little pain when i came home but for the most part i was sick and tired of cleaning it every day putting gauze on it all the time, not to mention i had an incision that was wide open!! i had stiches in for 9 days, and then they came out, and the doctor told me that the wound had to heal from inside out, my wound was huge. it took about 5 months for it to completely heal. i had to visit the doctor once a week for him to poke at me and tell me that it was healing, but that was the worst pain, because every time i went he would cauterize the wound (burn all of the scabbing off) he told be that it could not scab because it would not heal properly. i was in pain every time i left his office. now, to this day my butt is deformed, it may sound funny, but it is true, i have a huge scar near my tail bone ( kind of on the side of one but cheek in the middle) and part of it is completely numb, i did not have a bad doctor either, he is one of the best, he had explained to me that in order for them to get the entire cyst, they had to cut thru some nerves, and i may or may not get feeling back, well i haven't. so i'm not exactly saying not to have the surery done, but take a long time off of work for it... i only took off 2 weeks, and i went back to work too early, because i had an open wound, thinking i would be almost all healed by then. be prepared!!!!!!!!!!!

Date:

May 27, 2004

Story

My name is Lisa Ridner and when I was only 18 years old I got pregnate by my boyfriend. When I went to the hospital to do my sonogram they found something was not right with my unborn child, so they had a doctor from U C Davis do another sonogram to see what they thought we my baby has what it is called a "Omphalocele" which means that part of her intesdines was not inside her stomach. After they did the sono they did a ammino which when the put a long needle inside your stomach and some of the fluide the baby is in. That is how I found out I was Having a girl. I went into labor at 39 weeks and my Doctor did a C-Section to make sure my daughter wouldne't get hurt. She weighed 7lbs. 14ozs. and 181/2 inches. I didn't get to hold her until she was 3 days. Because they flew her to U.C Davis and did surgery but they coulden't put everything back in. So they had to wait untill she is 20lbs. Well my daughter is now 1 year and only 16lbs. And they are doing the surgery in June 2004. So if you have a chlid that has a Omphalocele good luck and I hope everything went well.. Thank you for reading about my story I don't tell alot of people about this all.

GOOD LUCK you can always email me if you want to talk or want to know more.. Julietsmommie2003@Yahoo.com

Date:

May 26, 2004

Story

Well, I just got my cyst lanced for the 1st time on monday..its now wednesday and its the 1st ive been able to sit up in about 3 weeks...feels great! except tomorrow i've got to go back and get the packing removed...i have to say..im not looking forward to it..its the worst pain i've ever felt in my LIFE! (and i've had many surgerys)

i dont have to get mycyst removed right now...but i do have to look into it. I leave in less than a week to go work at a summer camp as a lifeguard..im only 19...and this is one of the worst things ive been through, and i dont ever want to have to get the cyst removed...sorry this is not a story of hope..its a story of pain!

Date:

May 26, 2004

Story

Want to thank everyone on for posting their stories. I developed my cyst about 5-6 years back during freshman year. (24 year old male). No known precipitating event. Ignored it most of the time I had it. It frustrated me but I never really did anyting about it except wash the area well. I was always paranoid about the drainage spoiling my pants but I did make it for the entire time without anyone really noticing. Last year I decided it was time to go see a surgeon. I procrastinated the actual surgery till last Monday. I went under general and the surgery went well. I have a very small open wound (long but not wide or deep, 3.5 inches long x 1.5 cm wide at most). The pain since has been very bearable. The most painful moment has been trying to have a bowel movement. Also some pain swallowing from endotracheal tube trauma. Now I just have to keep this place clean. I'm optimistic though! Again thanks to all who have posted. It is very relieving to see that so many people are going through the same thing and have come out the other end with a good result. Good luck to everyone.

Date:

May 25, 2004

Story

I have noticed a lot of the stories are from people in their early to mid 20's. It is weird that this flares up now. I am 26 and have had a PC for the last 2 years. It comes and goes I never got it lanced. I would let it swell and then sit on a heating pad and it would go away. I had a topical antibiotic (Clindamyacin) that I would put on it so it wouldn't get infected. I have decided that after maybe 20 or so flare ups that it is time to get rid of this for good. I was not really into having surgery since I had a c-section last July 2003 and my gall bladder removed in August 2003. But I scheduled the surgery and my surgeon said he is not sure if he will stitch it or leave it open he will decide once he gets in there and how much he has to take out. I am really scared about this. I am glad I found this site to get informed. I really don't want a hole to pack. I have no one to help me my husband is afraid of the idea. I am going to have a nurse come and take care of it and luckily I have friends to come and watch my 10 month old. I did not know that I would have to keep the area hair free for the rest of my life. Can people email me and tell me which method seems to work for you. I wax my eyebrows and don't mind the pain. I would probably get it waxed but wondering if it is a good method to get all the hair. After surgery I don't ever want another flare up and definately don't want another surgery.

My email is Jesscuh@charter.net

Thanks

Date:

May 25, 2004

Story

Hello, I'm a 19 year old college student and yesterday was my first trip to the doctor's office to treat this disease. She actually told me that the sinus under my skin that had become inflamed was a remnant of a spinal cord fluid sac that a baby uses when it's in the womb. This is supposed to go away when your born, but it's a common abormality when it doesn't.

Anyway, she lanced off the growth yesterday, and the worst part of that was having to endure being stuck by a numbing needle in three places right on that nerve. She then packed it, but of course, I couldn't feel it. She informed me I will need surgery, so that yet is still to come.

The numbing medicine wore off and I began to experience pain at the new wound. I took 2000 mg total of Lortab last night to kill the pain. I took a bath to soak and clean the wound, but had a lot of trouble extracting the gauze that was packed in so tightly (since I had been numb.) That was probably the most tortuous experience of this so far. Once I finally got out of the tub, my mother packed in more gauze, but even though I tried to endure the pain of this, I still yelped. She therefore, didn't put the gauze in nearly as tightly as the doctor did, but we figured if our ultimate goal was to just keep the wound open and clean, it didn't need to be so tight. We covered it twith a band-aid, and I now dread the ritual that has to be done again tonight.

Will I be able to work in retail, as in a bookstore, if I go through this surgery? I need a job for the summer, and I don't know whether or not I should even bother with a job interview in three days.

Date:

May 24, 2004

Story

It is approaching 6 weeks since my surgery, and the wound is now a very shallow line about an inch long. The doctor who performed the procedure sewed it up in hopes that I would be one of the 60% success rates for immediate closure. A week later, I was packing it with gauze since it was not successful. I packed it for a week then just started wearing a gauze pad over the wound for the next two weeks. It would probably be completely healed, but I could not sit around and was back at my group cycling classes on the 3rd week and skating at the beach that weekend.

My friend the pathologist send me images of the slides of the removed cyst. He said it was very old and showed signs of having been inflamed several years ago with related tissue damage. I am now 40, and it was only 3 months ago that it became obstructed, diagnosed and lanced for the first time. Any previous inflamation would have probably gone unnoticed due to very active lifestyle and occupation with associated bumps and bruises including periodic injury to the tailbone area. It was also uncharacterisitally low and right off of the tip of the tailbone rather than being up higher, so any previous pain and swelling would have been attributed to some mishap, and at no point did it progress to the stage it did when I realized something was going on.

Overall experience was not bad after reading the horror stories here. Initial pain and swelling lasted about 5 days before someone told me what it was and that I needed to visit the doctor, and I had used hot compresses and long soaking sessions in a hot tub to get it to start draining. The doctor opened the passage more to facillitate drainage. Another two weeks of discomfort while it healed, a month of freedom then the surgery to remove it. I am glad to be rid of it having read that it can become infected again and again. I also am surprised to find the number of people who choose to live with the cyst and suffer through the periodic flare-ups. Once was enough for me.

Date:

May 24, 2004

Story

Hi everyone! I'm a nineteen year old college student and today has been one week since i got my excision. I first noticed it December of 2002 and i think it was caused from a job i had where a lot of physical activity was required. I thought i would wait it out as i was going into college pretty soon, and maybe i could get it done over one of the summer breaks. this turned out to be a bad idea as the condition got bigger and now i have a hole in my butt that i can put my fist in. It's ridiculous how big these holes have to be. my caretaker says that it is growing back in slowly, so thats a plus. The packing (it's the open method) is changed twice a day, supplemented with pills upon pills of vicadin and codeine. I hope the pain drops away soon like the website says, because right now it's pretty annoying. Sitting, laying down, and being awake are not much fun. So this is the first week, I'll keep you posted! Dustin

P.s. Thanks for creating this website, it's alot easier to find useful info here instead of reading medical journals.

Date:

May 24, 2004

Story

I am posting my story to let everyone know that having a PC is not the worst thing in the world. I am a male, 33 years old and in good health besides probably drinkng more than my fair share, being a smoker and probably 10 lbs overwieght. I have had mine since 1992 and it was never a problem except for getting inflamed and pussing once or twice a year which I took care of by taping gauze over the sinus and going on with my regular life. Then about six months ago the inflamation slowly got worse and worse and ended up exploding which happened at home, so no embarassing stories to humor you with. My wife finally convinced me to see a doctor. It didn't take much convincing at this point. My general physician diagnosed the problem right away and referred me to a specialist (you should see a specialist if you have a PC). After my first visit with the specialist (DR. JEFF MEYNIG, Austin, TX, call him, he is a great doctor) we set up a couple of more appointments to monitor and hope for the most beneficial conditions for the surgery, and then finally set a date for the excision of the PC which was May 14, 2004. I am happy to report that the surgery went off without a flaw and I am currently having my wound repacked and bandaged twice a day. We went for the open method to cut down on the risk of infection. I highly recommend a professional repack the wound for the first week so that they can monitor it for signs of infection. I was out of work for 6 days including the day of surgery and am now back at work. My point here is to get it taken care of as soon as possible. I waited 12 years and can't help but think if I had done something sooner, I might have healed a little quicker. I was lucky that my insurance covered a home health nurse who has been coming to my house twice a day for the past 9 days and now I am going to an outpatient clinic to have it changed, and will probably have my wife start doing it after this week. I have basically no pain to speak of just a little dicomfort from having to sit up all of the time. If you have a PC, don't be afraid to get it looked at. The most difficult part of my ordeal is trying to schedule the nurse visits. Being out of work for a week is not that bad, unless you are a busy body like me. For all of the younger people out there that are looking at surgery and being stuck at the house, Target has a 90 day return policy, so do like I did and go buy a Playstation 2 and return it after a couple of weeks. Just don't buy the games, you can't return those, but you can rent them. Hope all goes well for everyone. This is not the easiest thing to talk about, but just remember, Doctor's are professionals. They have seen much weider stuff than your backside, just ask one. If you want to respond to my story, post another story and ask me questions from there. Will

Date:

May 24, 2004

Story

To Andrew Herrera:

You were right not to go through with your 4th surgery. Go to a Colon Rectal doctor and get the full removal. Your regular doctor was a stooge for the insurance company. If the other 3 surgeries cost you anything, look into gett ing a lawyer to recoup those costs.

Date:

May 23, 2004

Story

Hi everyone, I am a 23 yr old female international student, in Germany. Last December I noticed a slight pain at the top of my butt crack (I never had any cleft or hole). I had something like this at some time before and it just went away without any trouble. But this time I was not so lucky. The pain grew worse and worse until I had to start using painkillers. I had a painful Christmas and by the time I decided to see a doctor, all the doctor's offices were on vacation. I tried to wait but it became unbearable. I could not sit down and walking was difficult. I made the brave decison to go to the hospital emergency room. The doctor did an ultrasound and told me I had a deep cyst and needed surgery as soon as possible. I was shocked. Soon they were taking blood samples, making me sign forms. Thank God I had health insurance. I had surgery 2 hours later Dec 30. It was such a scary experience for me. I never had any kind of surgery before and I was alone thousands of miles away from my family. The night of the surgery was the most difficult ever, the only good thing the residual effects of the anaestesia were enought to help me get some sleep. Every movement HURT. The only thing I could use was my arms. The next morning the doctors came in and told me that the cyst was even worse than they had thought and I was lucky to have the surgery when I did. They removed my bandages and pulled the gauze out of the wound, kept pulling and pulling !. That was when I realized how deep it was. OMG ! I had an out of body experience. I spent New Years alone on a hospital bed thousands of miles away from home. The nurses were nice, inspite of the language barrier, I was able to learn from them how to take care of the wound, not be afraid to shower or to use the toilet. When I left the hospital I was so afraid to change my bandages for myself, but I did it. There was still alot of pain. Unable to sit down, or walk properly for 6 weeks after. I had to see a doctor every week. My life depended on strong painkillers, which eventually did some stomach damage. But eventually the pain went and slowly life got back to normal. Problem is, I was doing well and then my wound just stopped healing. It's been 6 months now and there's still a hole about the size of a fingertip. I still can't exercise, run or do any sports. Will my life ever be the same? I wish everyone a speedy recovery and no relapses. bye

Date:

May 23, 2004

Story

my name is ken here is my story for years i sufford with terrible pain in my lower abdomen. i had received so many tests and was always misdiagnosed. i was told i had ibs, crohns disease ect.for years i also had a weakend imune system fungal infections you name it finally i beame so ill i could barely eat anything i had droped in weight to 114bs.my girlfreind had become very worried and rush me to emergency where i had a series of tests including a colostopy. well during the colonostpy they discoverd a mass in my stomach it turned out to be a tumor lucily its not cancerous now that i have recoverd from surgery i fell so much better and have returned to my weight of 160. the end

Date:

May 20, 2004

Story

hey there, well i have been reading this site consistently for a few months, mostly for the amazing support of stories that remind me that i am not the only one with a "broken butt". i am a 23 year old female and i don't have any opening associated with my pc, which judging by other people's account is a good thing. nonetheless my pain is often times horrible. it started as young as 13 or so, younger than most it seems, and i thought i bruised my tailbone too, (i played soccer, rode horses, and fell on my rear on a few occasions). anyhow i used to have flare ups every year or so. these flare ups were times when i couldn't walk, i couldn't sit, i couldn't sleep and no one understood why i was hurting so bad, maybe they thought i was faking. anyhow when i was 20 i had one flare up that i let go much too long, (i didn't know i had pc at this time) so i waddle into the doctor's office, with my dad no less, and the doctor tells me he has to lance it. OH MY GOOD GOD, talk about horrible and humiliating pain (my dad had to see my ass). to make it worse i had to go back for four days to get the wic changed, more pain. still, the doctor didn't recommend surgery. but he did warn that i am susceptible to flare ups particularly when i am sick or when i experience constipation, something about infection in the body targeting the pc area. so make sure you take your vitamins and your fiber. i still get subtle flare ups, and actually more regularly now, but i immediately attack it with antibiotics. so case and point: thanks for all you guys who have shared and you are not alone; P.S. to B in Oregon thanks for sharing your story i wish you had more support when you were going through this so i am glad you found this site, good luck on your recovery, you are in my thoughts. constant pain in the ass :) lori in texas

Date:

May 20, 2004

Story

I Just wanted to say to anyone out there contemplating surgery to please consider this option. I lived with this condition since my late teen years and only now at age 45 decided to get something done for good. I opted for the closed surgery taking a shorter route to recovery and all is fine after 4 weeks. The only negative side effect I am now feeling is an occassional pain while sitting a long time. The biggest positive result has been a great boost in my energy level and no more reoccurent infections. Lastly, I recommend a surgeon trained and experienced in this type of operation and plenty of time off for rest and recovery.

Date:

May 20, 2004

Story

I drove a forklift for almost 10 years as a divorced mom of 3 to support them. I was born with a pilonidal cyst sinus as a baby and it did not cause me trouble until about 10 years ago when it began to ooze the most rotten smelling beige creamy stuff continuously. I was in excruciating pain 24-7 at work from this and my self esteem fell to ground zero. I developed severe spinal pain....chronic...and was in severe pain driving the forklift at work. I began to take Excedrin which contains caffeine every 3 hours...EXRA STRENGTH EXCEDRIN..as well as occassional VIVARIN like the truckers use to stay awake because at times I was asked to lift up to 50,000 boxes a day in the factory paper plant.My thoughts became very dark.Anybody into Post Traumatic Pilonital Cyst Syndrome? I also would drink Big Gulps to deal with the growing addiction to EXCEDRIN pills to cope with all this. I developed an addiction to caffeine that takes 14 days to withdraw from as Caffeine dialates the blood vessels and you get a SEVERE 14 day headache due to the blood vessels constricting to deal with the loss of caffeine as the vessels return to their normal size.Caffeine also promotes Cysts, Lumps, Breast Lumps etc. in some Blood Types that can evolve into Breast Cancer.Especially Type A Blood NON SECRETORS Finally I was diagnosed with PC and the surgeon removed it via a 1 hour surgery. I was driven home from the hospital by a friend after a local anesthetic and my son would bring me TV Dinner type Food. Because of the location of the Sinus Cyst, I was unable to move or walk and layed down on my living room floor for 3 weeks literally while the stitches healed..NO ONE had sympathy for me or visited me including church people.I had to go on disability and did not have a nickel extra. I am surprised I did not have to file bancrupcy but I scraped through financially I prepared for the surgery with a full freezer before the surgery.As my teen son left for school, I would do journaling, remaking baby books, reading and family scrapbooking all on my living room floor...and I would Pray some of the deepest...longest...darkest prayers of my life...sometimes late into the night..The thing I longed for most was sympathy and kindness...and attention...something any most any teen boy is not in a possition to give...but he was nice to me so for that I thank GOD.I am suffocating with tears now as I remember how alone I felt as the surgeon brushed all of this off as nothing..3 weeks later I went back to the surgeon and the boil had errupted again and I had to have the WHOLE OPERATION REDONE AGAIN..and another 3 weeks on the floor. I developed extreme amounts of patience and humility from this experience.After the ordeal, I went back to my job and endured severe chronic back pain partially because the scar was very tight. After about 4 more years on the fork lift my back collapsed in pain and I could no longer walk. I had to keep working all of these years as my teen developed thyroid cancer which is another story and I needed the health insurance so I had to keep going for both of us.And I did. After 2 years of rejection from SSD my case Was found fully favorable. I have been on SSD now for 5 years and I am still unable to sit without my rear going to sleep. I have given up my job, house, car, was 6 months shy of being able to collect Company disability for the rest of my life, and gave up using my dance degree. I am able to walk until my back goes out due to sciatica running down my left side of my body and suffer from severe food intolerances that I just discovered help with through Great Smokies Lab IGG IGE testing..$164...worth every nickel..not paid for by MEDICARE. Stopped pain pills after the surgery as they had me on 2700 mg of Tylenol that caused me to have stomach SPASMS so I went cold turkey. BelIEve that the stinky smelling goo did a number on my immune system,as I developed lymph gland lumps that oozed in about 10 places on my body. Had these cut out at the same time...believe alot of this is due to food reactivity...100 percent free of caffeine..no more lumps..breast lump went away with no surgery..THE ONLY ANSWER is EAT RIGHT FOR THE BLOOD TYPE DIET and IGG TESTING that an HMO will not give..got mine at the Naturopathic College..I have lost 50 pounds now due to avoidance diet of DR> DAdamo.. Pain is so bad I have to sleep in Tempurpedic Foam Bed $3500 WORTHevery Cent but Medicare will not pay.Cannot be helped by Roving Wheelchair as it hurts to sit. Standing and Laying down are the only thing that works..Nocturnal Awakening of pain often.Had to get Recliner Couch which works well and I sold my dinette set because it hurts to sit up on normal chairs. The hardest thing for me to deal with is the loss of significant income...life on a little over $1000 a month and not being able to ever visit or babysit my grandkids because I cannot lift them, giving up a future career,not being able to stay longer than an hour at my daughters 4 hour wedding.When I went to the family reunion, people do not understand. I have endured much hostile humor...not HEALTHY HUMOR....and I had to lay down at the reunion and people made sarcastic comments to me///many said I should drink away the pain rather than lay down..I dont drink..thank God..who knows where Id be if I did that.....one relative siad I should be on more drugs...Anyway...I have learned to DETACH EMOTIONALLY and that I ALONE control my reactions to my circumstances. It is possible to let go of preconceived ideas and expectations of what you thought your life would be and choose new hobbies and a new lifestyle and associations..I am grateful that I can go out for a few hours at a time and do limited activities..all of you have my sympathy and support.B in Oregon

Date:

May 20, 2004

Story

I'm 21 and I've had 3 surgery's already. It wasn't till today, when I was supposed to have my fourth, that I realized my surgeon was at fault. I finally had enough nerve to stand up to him. Needless to say I didn't go through with today's surgery. My insurance has gone through some struggles and my surgeon wanted to do the same procedure that we'd do at a hospital in his dirty office. Moreover, he didn't even tell me what was going to happen today. I thought it was a routine check-up until I showed up. At this point, the surgery is more of a convenience instead of a necessity. I don't have a cyst, just a small opening that he's been trying to fix for 5 years. I've learned to live with it now, it's just like brushing my teeth at this point. I'm going to see another surgeon, hopefully a colon/rectal surgeon and see what the future holds. Anyways, my advice is to know what your going into and to not assume your doctor knows everything, or is always making the right choice. Study this website and know your informaton.

Andrew Herrera

Date:

May 19, 2004

Story

Hi I just found this site and I would like to say thank you. I felt the same way I didn' t want anyone looking at my rear. I was to have surgery on the 18th but my doctor said that it was to big and that he would rather me go to a general surgeon. I do not have a sinus but I have been in unbelievable pain for two weeks. Well I was to go see the surgeon and the day before we found out that my son has tumors in his legs so we have to have him in surgery on monday the 24th. My question is how long can you go on without surgery is the cyst dangerous? We also just found out that my husband is going to have surgery for a herniated disc in the c6-c7 area of his neck. I just cant afford to have the surgery right now so I would like to know if you think that that would be ok, if it is going to cause problems or not. If you dont mind you can email me at amie49@msn.com. Would really love to hear from you I have been scared to death listening to everyone about this. Thank you. Amie.

Date:

May 19, 2004

Story

First up,thank you for taking the time to establish such a comprehensive web site. For many years I have suffered various unidentified aches and discomforts pertaining to this region, it was only after a particularly nasty flare up that I was correctly diagnosed. As you say many people; especially the ones who should be,are unaware of this complaint even to this day, that is unaceptable. I have all the classic symptoms you have mentioned, 25/3/04 I was diagnosed, I have a small opening on the left hand side of the top of my crack (I'm an Aussie so no probs saying that!), it is currently seeping pus and I have just had a hot bath,I have been advised surgery is my only option, no other solution has been mentioned. As guys go I guess I have a hairy butt, my wife has shaved it and I am keepin it clean and hair free. Without info gained from your site I would have been unaware of the need to do much of this, the cushions the antibacterial soap etc, I commend and thank you for your diligence. May the ignorant doctors of the world be plagued with a boil on their butt. Mick(40) QLD Aust

Date:

May 18, 2004

Story

First I want to thank you for this website. It's what prompted me to seek medical attention for my husband's pc. A friend of his, a nurse, diagnosed it about 2 months ago and it was only after reading your website did we go to a surgeon. We went yesterday and the doctor said he was going to drain it. Fair enough. Pop a hole in it and let it drain, right? Nope, he cut the cyst out!! So now there is a hole about the size of an almond. And he cauterized it too. I can't tell what is gauze and the other ook that is in there. I hope I am doing it right. I think he should have forewarned us that there is no work for the rest of the week, no softball and no other hard work. He just went to work on the cyst and numbed him and took it right out. He has only needed some Ibuprofen and has taken 1 demerol. I'm glad we caught it early, as the doctor said there was some infection in there. Thank you so much for this website. After reading all the stories I was terrified and I feel horrible for all the pain that everyone is going through. My husband's comments are that, it's mainly uncomfortable, not terribly painful and that he doesn't understand how single people handle this. You really need someone to help you flush and pack the wound. I'm hoping for a speedy recovery for him. But be aware this wound will take a long time to heal. We will keep you all posted. RSJ in Maryland

Date:

May 18, 2004

Story

HI Everyone. Thank you so much for the website. My husband's friend, a nurse, diagnosed my husband with a pilonidal cyst about 3 months ago. It was only after reading your site, did we make an appointment with the surgeon. We went yesterday and the surgeon said he was going to "drain" it. Fair enough. Stick a hole in it and let it ooze out, right? Nope. He cut around the cyst and cauterized it and now there is a wound about the size of an almond. I was terrified after reading the stories of packing and cleaning and I have to admit, I'm not sure if I'm doing it right. But he is not in as much pain as I thought. One note, the doctor did not tell him how he needs to be off work for a few days, no more softball and how he needs to take it easy. I think we should have been forewarned. So everyone out there, make sure you understand how easy you need to take it when you are in recovery. He has taken the Ibuprofen and has Demerol in case it gets really bad. I think he's taken 1 so far. My husband says that he doesn't know how single people would handle this. You absolutely need some assistance. Overall, it hasn't been as bad as I thought, but we will see how long the wound takes to heal and I will keep you posted. Thank you. RSJ

Date:

May 17, 2004

Story

May 17, 2004

My husband had his pilonidal cyst removed 1 week ago today. I can not stress enough how important it is to make sure your doctor/surgeon explains the process and procedures PRIOR to having this removed. My husband is a disabled veteran with lower back problems, so he assumed this 'thing' had something to do with his back. Therefore, he went to the VA hospital and received his surgery through them. The surgeon sent him home (he drove himself) within a couple of hours of the surgery with one piece of paper that said change dressing 2x a day. The surgeon NEVER explained to my husband that he would have a hole 4" x 2" x 2 1/2" in his lower back/buttocks area. Needless to say the first dressing change came as one hell of a shock to both of us. I literally passed out. Finally after 45 minutes, I was able to stand and get him to a "real" hospital. There they explained that for the next 3-4 MONTHS we will have the pleasure of packing this gigantic hole. He is so miserable and depressed right now. I've read through so many of the other personal stories - I sure wish we would have known what we were getting into prior to all of this.

Date:

May 16, 2004

Story

Here is my post surgery follow up. My surgery was on April 14th. What I am about to tell you is going to make you feel great. A month after my open wound surgery and I was playing full contact football just today. My wound started healing slowly then about the second week it just went crazy healing at a furious rate. I was in the middle of the semseter during my surgery and missed a week of school. I was playing it safe not pushing it too early. I am a computer programming major so it was hard to catch back up, but in life anything is possible with hard work.I also had to take final exams just two weeks after my exam and things went well. Here is the wound care Q&A. -My wife packed my wound for me. -The wound was about an inch and a half deep and about 2 and 1/2 inches in diameter. -Have the open wound surgery the rate repeat cist rate is 1 out of 10 as opposed to the closed wound reoccurence rate which is close to 50%. The best way to care for the open wound is as follows:--- -2 hot baths a day allowing the warm water to loosen the packing decreasing discomfort when removing the gauze. - before exiting the bath fill a squirt botltle with a 50/50 solution of peroxide and sterile water. This irrigates and disinfects the wound. -after irrigation dry the wound thouroughly -pack the wound with gauze and cover with a topper gauze. -keep a pack of baby wipes or sanitary moist wipes with you. when you have a bowel movement you must thouroughly clean the "area" to decrease the risk of infection from "down below" -take pain medicines every four hours for the first 72 hours. The pain is going to be suprisingly moderate but you you need to be sedated enough to rest and be able to relax. -as I said you will be suprised at how little the open wound will hurt, most of the nerves are remove when that area of flesh is removed so it doesn't hurt it is just sore. The open wound is the best option the closed wound never heals right and infection risk is high.

-----You will be fine and all will be well !!! Please email me after the surgery to tell me how things went, or if you have any more questions.---------------------------------- Michael S. MacDonald

mikemac@compiledcreations.com

Date:

May 13, 2004

Story

I'm a 29 year old guy from Canada that just got diagnosed this morning. I'm not in any pain but I have a lump that is tender if I press on it. It's been variying in size and sensitivity a fair bit since I've noticed it about 6 months ago. Smallest was about like a green pea and largest was about 1 inch wide and 1/2 high (when I had the flu). Even at the largest it was not very painful.

The lump is completely outside my butt crack but the doctor discovered that it does drain throught a small sinus in the crack (an inch and a half away) when pressed. I had not noticed this myself.

Weird detail: I have two small sinuses, one drains pus and the other blood (both drain only when pressing on the area, not by themselves and not a lot). When the doctor mentionned this I suddenly remembered about a "pimple" in my buttcrack that would sometimes itch and bleed a little when scratched. To me it was less than an acne pimple so I never worried about it and had it for a few years. Turn out this is the bloody sinus. The pus one is new I think (came with the lump I guess).

I'm on the low-priority surgery waiting list to get it removed which they say is about 3 or 4 months wait. I'm sure I'll come back to this site and post when I'm on my medical leave and have nothing to do all day lying on my stomach.

Keeping my fingers crossed after hearing about how bad it can be for others. So far it's just been a little shyness pulling my pants down for the female doctor and a few pains when I have hit the area accidentally.

By the way, I'm not particularly hairy but I do work sitting in a chair all day.

Oh, and that medical diagram I see everywhere on the web scares the hell out of me. That drawing shows like a 6 inch by 6 inch by 1 inch infected area filled with pus and multiple large holes draining it. Yikes! I feel sorry for anyone here who actually got it that bad.

Date:

May 13, 2004

Story

Hey all - I'm a 19 year old male college student, and I just got out of my second I&D (incision and drainage). The first one didn't get anything and the doctor thought it may have just been an infection. This morning, the doctor went a bit deeper and caught it. Now I've got to keep this thing packed in with gauze and all that stuff. This is my second pilonidal cyst in two years, though the first one was in a different spot. It's scary, but I think it was definitely worth getting it opened and drained. To everyone out there who's got one - good luck getting rid of yours.

Date:

May 13, 2004

Story

I had my surgery about 3 months ago and I am pretty much back to normal now minus the scar on my tail side. Overall my experience was a good one the first 3 weeks were uncomfortable but there was never any excruciating pain. My surgeon referred me to a wound healing center after the surgery and that was great the fact that I got it looked at once a week was piece of mind and I think that aided in the healing process. I had a hard time not going to the gym and playing basketball but I followed the doctor’s orders and after about 1.5 months I was back on a regular workout schedule. Overall the past three months were well worth getting rid of this thing which I had for two years. Take your vitamins, follow aftercare, eat a lot of protein, keep a positive attitude about things and refer to this website for information and everything will work out.

Date:

May 12, 2004

Story

Hi All!

I'm a 17 year old female from Canada. About 4 weeks ago, I started to feel a terrible pain in my tailbone. I used yo be a figure skater, and often fell hard on my tailbone, so I figured it was just some residual pain. However, the pain became worse, and I could feel something growing under the skin. I was really scared so I called the toll-free health line. After waiting on the line for about 45 mintues, I got to talk to a woman who was more concerned with asking questions to fill out a survey, than trying to diagnose what was wrong with me. I decided to go to the ER. A quick thanks to my best friend who took me down there even though it was her birthday! The (male) doctor told me I had a pilonidal cyst, and I'm thinking what the hell is that? I ask him if he knows what causes that, and he says no one really knows. He says I have to come in the following morning for him to drain it, and prescribes me some heavy duty anti-biotics and an anti-inflamatory. So I come back the next day, and a doctor and a very friendly nurse whom I have become good friends with gave me something to control the pain and a relaxant via IV, and began the procedure. I didn't feel any pain at all. The doctor told me that I would have to come back every day for about 2-3 weeks so they could repack the wound. This was really scary for me, especially because I'm in my exam period at school. The first day I went for my packing, I was under the impression that it wouldn't hurt that badly. WRONG! The nurse removed the existing packing without letting me know she was about to do it. I felt like I had had some skin pulled right from my body. I became hysterical from the pain, so in order to repack it, they had to give me some Tylenol 3's. I managed to get through it, and everyday since has been virtually painless. It has now been almost three weeks, and they say I have at least another three ahead of me. At least. Well for anyone who is dealing with this, I feel your pain. Literally. I have had some moments of depression, and some why me moments (especially after having a different medical professional probe around my private parts every morning) but then I realize that I have no choice in the matter. I have to get this fixed, and that's what keeps me going. I'll keep you all updated, good or bad.

Alex M.

Date:

May 10, 2004

Story

This is Glenda again, I forgot to say that the MRI and the colonostopy did not show anything. I'm still paying for all that. Glenda

Date:

May 10, 2004

Story

Hello, fellow sufferers. First off, many thanks to Sasha and the other warriors that take care of this site. I will try to keep it short, which means leaving out alot of pain and suffering. I am a 49 yearold female, used to be really healthy, worked physical jobs, no problem. I always had a strange tailbone and dimple, but only one doctor mentioned it in passing and never alluded to the fact that it could be the cause of much devastation and suffering in my body. So, over the years I never had a problem. But, one of my favorite things was a long, hot soaking bath, even in summer. Every single day of my life. Never a problem with my pilonidal dimple, that I didn't know I had. Strange tailbone, yeah, pilonical cyst, no clue. Then, I inheritate a small house, so small that it only had a tiny shower, no tub. If I only had known then what I know now. I guess that is hindend-sight. (The butt jokes are endless). Anyway, so after about a year of living in that little house, no tub, I found a strange pimple thing in my buttcrack. It wasn't even like a pimple, more like a rubber pimple. Later on I began to have itching in anus, that eventually felt like a crawling sensation. This was EVERYDAY! So for years this went on, with me thinking I had hemarroids. Meanwhile, I began to get sick alot, I thought it was the flu. But, I didn't have the typicalcyst that could be noticed at skin surface. It evidently was forming and growing deep in my body. So finally, I started having alot of bowel problems. I thought it was because I always eat pretty good and I was getting older. My abdomen actually was getting bigger. I just thought I was getting fat. But, I still could hold down a job so I didn't give it all that much thought. I'm not one to run to the doctor. So, then I started getting a leading in my panties, alot. I thought it was sweat because at the time I was living in SouthTexas with no aircon. Anyway, finally noticed blood. I started passing strange tissue, hair, and gross stuff. I go to the doctor, supposedly a good one and tell her my symtoms. I asked her, "It seems like a ingrown hair or something has grown into my colon, is that possible?) Me, a layperson, never heard of pilonidal at this point. Her, the profession, answered me back "Well, if that were true, it would be really painful." Never does pilonidal cyst word cross her stupid lips. She does a fecal test, and finds blood. She tells me that is not normal. Really. Anyway, that was that. Later, I'm telling my friend my problems, and she says it sounds like a fistula, her husband had had one. So, I'm later talking to my brother and he says pilonidal cyst, and I know that must be it. So, I go to a supposedly good surgeon, who tells me that the symtoms I am telling me "can't happen like that, and he would know because is a very good professional and he would know". This is after a rectal exam witha light, fun. And rubber glove finger test. Using a rubber glove is like making love with a rubber, he didn't feel anything. He told me I just "thought that because of what my friend said." I told him that I am not a hypochondriac, nor a nut obsessed with my own butthole. I was very angry, as he was patronizing, arrogant, incompetent jerk. I had explained to him that I can feel openings in my colon because I have to put my finger there to suds it and keep it completely clean so it doesn't itch me to death. I am a clean person, and keep my hands and nails nice, I bartend for a living, or waitress and I scrub my hands and nail with a nailbrush everysingle time. But he is horrified that I do that. So much for healthcare people. Meanwhile, I go back home to Missouri and ride horses with my friend in the national forsest and get a tickbite. This all the time happens in Missoure. But this time, I get really sick right away and get pnuemonia really bad and astma. I go get Z-Pack and go back to Texas where I get a relapse of pnuemonia and just have been sick ever since, 2 years. I wind up in ER and am all swelled up like a monster, they put me on benadryl, steroids, inhalor with steroids, iv with antibiotics and can't figure it out. I don't tell them about the cyst thing as I didn't think they'd believe me anyway. Also, all during this, no health insurance. So I finally go to a doctor who looks at my bottom and says yes, you have a pc. She refers me to a surgeon who says take antibiotics and come back after the infection has calmed down, which I do, then he says come back when it's worse and in the meantime they schedule a MRI and colonostopy?. All of this I am paying for. Now my surgeon says live with it. I don't have anymore money for surgery that I so desparatley want. I am so constantly rundown and sick that I can only work parttime, and I have to rest alot and my life has really gone downhill. My life as I knew it, is over. Very depressing. I can't afford to shop around for a surgeon that is brave enough to tackle this bad boy I have. It is very advanced. I worry, it has tunneled into my colon, will it tunnel into my vagina also? I have back pain, abdomen pain, leg pain, my hip hurts alot, you name it, this is sytematically affecting my entire body. I get bladder infections easlily, and it really hurts everything else. This is a terrible way to live. I don't know what to do. I live just a couple miles from Mexico, maybe I should find a good surgeon, but anything in Mexico is risky. I don't know what to do. Sorry for the length of my story. Will this thing travel up my spine, will it eventually paralzy me? Can it really go in my heart? Well, thanks for listening. Glenda in Texas

Date:

May 08, 2004

Story

I had never heard of pilonidal disease before, but I sure do now! I woke up on a Monday morning in mid March with a pain just above my butt crack. I thought it was because I had been curled up in my easy chair reading all weekend. I ignored the pain, but it didn't go away. By Wednesday, I had a large, painful, red swelling and I knew I had to see a doctor. I went a a surgeon and he lanced the cyst in his office. Yowie! Did that hurt! Next, he told me he would remove the cyst the following Monday. Boy, did things move fast.

I had the suregery and spent one night in the hospital. When I got home, I was anxious to see the open wound that was there. I would not recommend this. I almost passed out, I could not believe how big the hole in my back was. My soft tissue had been 'scooped out', it looked freaky.

The home health care nurse came every day and packed my wound with gauze soaked in saline. My doctor also prescribed a solution called Dakens, which was made up of vinegar, bleach and saline. It helped keep the wound clean and helped with drainage. I feel I received very good care by all.

I am almost healed up, still have a small hole. The pain was bearable, mostly it's been inconvienent. I like to stay active and exercised on a regular basis, so not doing much has been difficult for me. I had to really cut back on how much I was eating, because a result of this disease is inactivity and weight gain can happen.

This website has been a great resource for me. I would like to say a special thanks to the lady who posted her recomendation of Balmex to sooth adhesive tape rash, it's working great!

Date:

May 08, 2004

Story

Some words of hope! I recently had a minor pilonidal sinus removed. The procedure took less than an hour. I had a dressing taped to me for a week after the surgery. I then had my stitches removed and so far I have been on the road to successful recovery. When I heard I had this disease I was very distraught and after reading all these horror stories and looking at the photos I nearly did my head in! I feel that positive thinking and acceptance definently helped me get through. So, all the best to everyone out there who is suffering and please take heed that success in ridding of a pilonidal sinus is definently an option!

Date:

May 05, 2004

Story

Just to let you know, I've written in here a few times about having surgery on February 11th 2004. Well I am all healed:D I just wanted to wish everyone well and good luck. Remember that not everyone has a bad experience and if you can have the surgery done by a good doc go for it! Good luck and happy healing!

Date:

May 05, 2004

Story

First of all, this is a great site and I want to thank you for putting it up.

I had a mild case of the disease. I didn't have to have anything lanced and I was in some pain, but not enough to go to the emergency room. Having never had surgery of any kind before, I overracted when I found out that the only way to fix the problem was surgery. After a month everything healed up, but I still had some problems sitting, so I decided to schedule a surgery around college winter break.

I went to a young general surgeon who said that he only did closed surgery and he had never had any of his patients have any problems. I told the surgeon I did not want to be put under general anestia, so I just got a local and was sedated through my I.V. The recovery was painful, and it took about three weeks to heal up enough that I could drive. The first night I got home from the hospital, I slept on the floor in living room because it hurt to move. I didn't leave my living room for 24 hours. I peed in a cup. (My poor husband!)

Anyway, after about a week I started to feel good again. It's been about four months and I keep getting better and better. I still have some pain when I do some things, and when I get menstral cramps that part cramps up too. But for the most part I don't even notice it anymore.

I would highly recomend surgery to those who are considering it. I think that doing the closed surgery was great for me and I would encourage anyone else with a mild case to not go through the pain of an open-type surgery where they have to stuff the wound. Also, being sedated through the I.V. was great because I didn't remember anything and when I woke up I was very alert. The most important thing is to find a nice doctor that listens to you and explains everthing.

A couple of other tips...

1. If you are on pain medication eat food with a lot of fiber because pain medicine can make you constipated.

2. My doctor removed all of the cyst but I still was worried he didn't get it all. He explained that it was probably scar tissue. So if it doesn't feel like it's all out, that could be why.

3. If you have closed surgery, when the stiches come out sometimes the edges of the wound pull apart a little. This is also normal.

Don't freak out! It will be okay. Just keep saying to yourself that it's only MINOR surgery. I called my friend who's a nursing student and I was all hysterical because I was so afraid and she explained to me about all the safegaurds hopsitals put in place to make sure you will be okay.

Also, unfortunately, right before I learned I would have to have surgery I had just watched "The Worst Medical Mistakes" on Oprah. This did not help my overracation, but everything turned out great.

Date:

May 04, 2004

Story

……. Finally got a chance to sit down, (pun intended) to write about my Pilonidal experience. I want to cover three points:

1. Get diagnosed properly by a specialist. 2. Understand the treatments 3. Get over it

I traveled down a few different roads of diagnose. First was self-diagnoses, largely by searching the Internet for symptoms and cures. This is a good way to get a overview of the problem but it leads to endless searching for magic bullet cures, (drugs, herbals, lifestyle change, etc). I finally went to my doctor; (duh!) who recognized the condition immediately and refereed me to a surgeon, who booked me in for the next month.

Get used to it-the only way you are going to get rid of this problem is by "going under the knife". Understanding the surgery is important. After reading many testimonials I believe that some people think the surgery is a lancing at the doctor's office, or by a surgeon in the emergency room. Although this provides a temporary cure, surgery means surgery-general anesthetic and some serious turkey carving! Question your surgeon! Ask her how many pilonidals she has done and which technique is used. Mine had done half of the city I live in-sounded good to me .

A note on drugs: before surgery the only thing I could find that worked to reduce the infection was a full spectrum antibiotic called Levaquin by Ortho/McNeil-be warned, this stuff is not for the faint-hearted. Read up on the side effects before taking. Tea tree oil is great for direct application to the area for you herbalists out there; it does help calm the area. To be honest salt baths didn't do me much good, but it is recommended.

After the surgery, Daily post op. care is really important. Depending on the surgery technique you will have different wound care requirements but packing the wound with gauze is usually standard. Don't take this lightly. Packing should be performed daily buy a nurse if possible and should be continued until your specialist gives the O.K. This could be a few weeks. If you allow the wound to close to quickly your chance of reoccurrence is really high. After healing remove hair from the area for the rest of your life! (a loving spouse helps or an understanding hair removal professional).

I cannot tell you how different I feel after this surgery. I have gone from living needlessly with constant discomfort to having no pain what so ever. Take the few weeks it will take to get well, arrange it with your boss and get the surgery done now!

Date:

May 03, 2004

Story

Hi, I'm 26 years old, and I don't think I had as many problems as most of these people did, I'm sorry for the those of you who had tremendous problems. I had my first flair up when I was on my way home for Christmas break my second year of college. It was a 5 hour drive, talk about pain. I thought I had broken my tailbone. My parents took my to the ER the next morning, where I had it lanced, and got a wick put in. This was Dec. of 96, I was 19 years, almost an exact year after my life-threatening appendicitis. I then did not have any problems until 1998, nothing major just kept sitting in the bathtub. Then in December 1999 was the worst, I had already scheduled to have my surgery in Jan. 00 but the two weeks before I couldn't even walk, I happened to look in the mirror, and my bump was so large it was literally tearing my crack. I went and grabbed a safety pin, soaked it in Hydrogen Peroxide, and poked it to relieve pressure. It was the most disgusting thing I had ever experienced. It was just blood and puss, and the most disgusting smell I had ever encountered. It bled and everything else for a half hour, finally I had to leave so I could make it to my friends bridal shower. I put a maxi pad on figuring it would catch everything. Then my friends grabbed me and told me the back of my pants were completed soiled with blood, so they grabbed bandages and taped me up. No one had even heard of this, so I explained what it was. My surgery was great. I was stitched up, and had no further complications, my surgeon basically opened me up and scraped everything out of that area. Then about 4 months later I had a close friend with the same thing, she had the surgery, in which hers was left open, I talked to her last week, she has to have surgery again. I had 6 friends, including an ex-boyfriend that I lived with at the time go through the same thing. Only 1 is having problems. My x was also stitched up, all the others where left open and had to pack. They have all complained of further problems. Maybe there's a difference maybe not. I'm glad I haven't had any further problems. Sarah

Date:

May 03, 2004

Story

I have been dealing with the Pilonidal Disease for at least 20 years if not more. When I first was diagnosed I had it lanced and I felt much comfort. My doctor made me aware that this occurance could come back because he said you would have to get to the core of it. Being that I'm a big chicken, I felt I could deal with the pain and take antibiotics. As of three months ago it came back within two months (this has never happen) I'm thinking that this happen because I don't like water and I would always take medication w/beer (real stupid). Anyway in the past my cist would come back on once a year basis, so I was really taken by surprise. I thought this is happening because I should not have been taking medication with beer. Now, that my antibiotic is all gone I can't call and ask my Doctor for a refill (especially since this was 1000 miligrams) so I know it's time to be removed. I called my doctors office and now awaiting for the nurse to return my call so I will no the procedure. I just ask that I be healed and delivered and relieved from my fear. I do realize that this problem never seems to go away, so I'm praying that once I get the statistics and procedure this will help motivate me to follow thru... Toledo, Ohio girl

Date:

April 30, 2004

Story

I AM A 18 YEAR OLD WHITE FEMALE AND I NEVER WANT TO HAVE KIDS. AFTER THE PAIN THAT I EXPERIENCED I HAVE DECIDED THAT DRUGS ON'T WORK AND I DO WANT TO GO THREW IT AGAIN. I KNOW THAT THIS MIGHT SOUND BAD BUT I DON'T THINK THAT I COULD GO THREW THAT MUCH PAIN IN MY BUTTOCKS AGAIN. IN FEB. OF 2004 I WENT TO THE EMERGENCY ROOM TWICE. MY PRIMARY DOCOTOR TOLD ME THAT THERE WAS NOTHING TO WORRY ABOUT AND THAT I WAS FINE. WELL IF I WAS FINE THEN WHY DID MY BUTTOCKS HURT SO MUCH. ANYWAY ON FEB. 13 I WENT TO THE EMERGENCY ROOM BECAUSE IT WAS AFTER HOURS AND I NEED SOMETHING TO GET RID OF MY PAIN. I FOUND OUT THERE THAT I HAD A PILONIDAL CYST. I HAD NO IDEA WHAT IT WAS BUT I SURE KNEW THAT IT HURT. I WENT HOME AND DID WHAT THEY SAID. ON VALENTINES DAY INSTEAD OF GOING OUT WITH MY BOYFRIEND HE DITCHED ME AND WENT OUT WITH HIS FRIENDS BECAUSE I HAD A CYST. LETS JUST SAY I AM NOT WITH HIM ANYMORE. ANYWAY ON FEB. 16 LESS THE 4 DAYS LATER I FOUND MYSELF AT 4:30 IN THE MORNING CALLING MY SISTER AND MY MOTHER TRYING TO FIND SOMEONE TO DRIVE ME BACK TO THE EMERGENCY ROOM. IT WAS THEN THAT I HAD THE CYST LANCED. I THINK THAT HAVING IT LANCED WAS THE BEST THING POSSIBLE FOR MY BUTTOCKS AT THAT TIME. THE PAIN WAS ALMOST GONE. LATER THAT WEEK I WENT TO THE DOCTOR AND HE DECIDED THAT HAVING IT REMOVED WAS NOT REALLY NESSIARY. OH YEAH MY SISTER SAID THAT I SHOULD ADD THAT SHE GOT THE PRIVLAGE OF TAKING CARE OF ME AND CLEANING MY BUTTOCKS. NOW APRIL 30, 2004 MY NASTY LITTLE CYST DECIDED THAT ITS GOING TO COME BACK AND THIS TIME I AM GOING TO MAKE SURE THAT IT DOES NOT COME BACK AGAIN. I KNOW WHAT TO LOOK FOR AND HOW TO TREAT IT BUT IT STILL SHOULD NOT HAVE COME BACK IF I THINK SO. I JUST THOUGHT I WOULD TELL EVERYONE ABOUT MY STORY AND HOPEFULLY I WILL POST ANOTHER STORY TELLING YOU HOW I HAD MY CYST REMOVED. THANKS FOR READING

Date:

April 30, 2004

Story

I have no idea how long I have been living with this. My tailbone became rather painful about 2 and a half weeks ago. So I went into the Dr.s office on the 21 of April. Was able to lance it on the 27th. It's wierd I am walking around with a gaping hole in my but that doesn't hurt. And a few days ago I couldn't ev drive my car anywhere without werious pain. Anyway, they remove the Cyst in a week. Dr. says that it is possible to heal in about 2 weeks or so. But not to bet on it. I am just happy it doesn't hurt anymore. Even though it looks like it should.

JD

Date:

April 28, 2004

Story

Hello, everyone. I have read all of the posted stories and a lot of them are quite similar to my friend's experience. She moved into her present house about a year ago and within a week or two developed a painful p.cyst. She lived with it for a few days, but woke up one morning in sheer agony. She rushed to the emergency room and had it lanced. She got surgury a few days later (opting for the open wound w/ gauze healing procedure). A few months later her roommate got the exact same p.cyst, with the severe pain, lancing, surgery, etc. I found it odd that I have never heard of it before, and then all of a sudden my friend and her roommate get it? I noticed some other stories where two sister had gotten it, and two friends had gotten it. Is it possible that it's contractable? Or my other theory is that there's something in the house or the water (like chemicals)? Maybe it's just my conspiracy theory in the works, but if anyone has any similar experiences or ideas please post back. Thank You

Date:

April 27, 2004

Story

I am 28 year old hispanic female who has been living with the post-surgery pilonidal cyst/sinus removal for 11 years. It started with pain and discomfort and myself thinking that I had broken something. I said nothing for a long time because I knew my parents would take me to the doctor and something awful would come out of it. The night it got unbareable was when I was for dinner with friends. I could not sit comfortable in any position. When I got home I had this huge black ball above my butt crack. I freaked out and told my mom. The next day I went to see Dr. Reddy and he lanced it open right there and then. I was so scared and I regretted telling my mother about it, but it was for the best. The lancing seemed to cause more problems for me and I suffered through surgery right after my highschool graduation. The packing process is a complete joke when it comes to pain. I cried and begged my parents not to do the packing but they still did them. I can't swallow pills so pain meds were out of the question. I though I had recovered quite nicely from my first surgery but I was wrong and in November of that same year I had another surgery. This time I spent a whole week in the hospital. Within the span of 6 years I have had a total of 5 surgeries regarding pilondial cyst/sinus. I have a funny scar and I haven't had any problems since my last surgery. I do keep it extra clean and rinse my hair to a side and clean in between the cheeds before getting out of the showere daily. Recently my little sister has been experiencing the same discomfort and the doctor has told her that is also has a pilonidal cyst. I am consently on her behind about keep her self clean and hair free. I do not want her to go though the same thing I did because it's not fun. For everyone who has gone through this I feel for you and anybody that is about to experience it I pray for you.

Yvonne Texas

Date:

April 27, 2004

Story

Oh god, this just happened to me!

I am a Canadian woman teaching English to schoolchildren in Korea. I never experienced anything like this at all, ever! This past weekend was a 3 day weekend for me and I was touring Korea by car. This was not a good idea as about 14 million Koreans had the same idea. Anyway at a rest area I suddenly started feeling intense pain around my tailbone and couldn't get comfortable. I sat funny, on my side, side to side, but NOTHING would make the pain lessen! OUCH! Finally the pain was ridiculously intense so I have my friend pull into a rest area and I proceeded to get DRUNK (yes-you can buy alcohol at highway rest stops in Korea- it says something doesn’t it?) The Koreans that were there drank with me and soon I was totally inebriated! However, the pain was still there.

I went to the bathroom and I thought I was going to die right there and then. As I was removing my pants I heard something “pop” and then felt my back get wet. By now I am panicking! I look around and all I see is blood and pus- everywhere! The smell was unbelievable! I cleaned up as well as I could and then left.

I can’t speak Korean at all, so you can imagine how scared I was. I got my friend to take me to the doctor. We finally reach a doctors office, and now I sort of wish we didn’t. The doctor took one look at me and asked if I was a Russian (There are many here) prostitute! I said no rather shyly, and he then asked if I wasn’t a Russian prostitute, then how did I get a sex disease? I was stunned! He told me I had a version of the avian flu, the anal avian flu. He said this was caused by anal sex! I could not believe what this guy was telling me! I am a good Christian woman!

Anyway the doctor had me remove all my clothes, although I told him my pain was only in one area. He then squeezed the hell out of my abscess- I passed out from the pain. I awoke to a throbbing pain in my backside. The doctor said “ok now! Number 1 ok?!” I was so humiliated I just left- I am going to see the international doctor tomorrow.

Date:

April 26, 2004

Story

Hello everyone, I don’t know how long I lived with Pilonidal Disease for however I have been living with the after affects of the surgery for all most 10 months. I had surgery early July after I slipped in the woods and fell on a tree stump. First I was told I had a broken tail bone, then as the days went by the pain got worse (I could nothing to get comfortable) so I went back to the hospital and I was told that I had an infection because of the break in my tail bone. A few more days latter when all I could do was cry in pain day and night I went back to the hospital and demanded that something be done. I surgeon was called and his first reaction was can we operate on you right away. After surgery I felt great (tell the pain killers wore off) I was off work for about 2 and a half months because I could not sit down for long periods of time. I have also had to make regular trips to the hospital for dressing changes. I have been making daily and if not daily then every other day, trips to the hospital for dressing changes. I was not “stitched up”, I was left to heal, to grown from the inside out. The smell has not yet gone away nor has the bright green drainage, and I have tried a lot of different things that the Nurse suggested (sit in a vinegar bath, and salt bath) and nothing has worked. The new skin that has grown back has some hair growth, the surgeon suggested using Nair. I tried this and never again. It hurt like hell (some of the Nair ran into the open wound) and it did nothing. I have been looking for information on slow healing and have come up very short. I have been told that the heeling time is about 4 months, well I am now 6 months past that time and growing very frustrated, I don’t think I remember what normal is any more. Newfoundland, Canada

Date:

April 25, 2004

Story

April 24, 2004

I like many others have lived with Pilonidal Disease for quite some time(8 years). I thought all this time that it was hemmorhoids and tried dealing with it using preparation H. For some reason it seamed to help some and flare ups never lasted more than a couple weeks. The past few months the presence of blood was filling the toilet bowl when I would go #2. Taking metamucil and other forms of fiber helped the bleeding part a little, but the puss and odor associated with pilonidal got too much. Being a teacher and coach I am very active and around a lot of people. It was becoming a part of my life that I now realized could have been taken care of a long time ago. My wonderful wife had been trying to get me in to get it checked out for some time and I finally took her advice. I first noticed it when I was 19 and I am now 27 and taking action. The doctor diagnosed it and a week later I had met with the surgeon and was under the knife. When I woke up I felt fine. I experienced numbness all throughout my crack and 3 weeks later it's just starting to come back. I did have to get a drain put in. The surgeon inserted a small tube and the top of my butt that went about 6 or 7 inches down to extract the liquid that fills up the space after surgery. I think dealing with the drain was worse than anything so far for me. I haven't felt much pain at all. I took the pain meds for a few days afterwards but stopped because they made me feel nautious. As soon as I stopped and got the drain out I fealt a million times better. Since then I had to go in and get a few more stitches put in to hold me together, but the healing is going good so far. It is very difficult because I am usually very active, but I know the more I move around the slower it will heal. I think that reading the stories has helped with the depression that comes with dealing with pilonidal. I still leak and have to use plenty of gauze and some of my wife's pads to help soke up the mess. I definately wonder if I have a big wet spot coming from my butt all the time when I'm in public, but I had to deal with that when I had the cyst as well, but now there isn't that horrible odor. The doctor wants me to use Nair to keep the hair away, I would appreciate any comments if anyone has used this before and what to expect.

Date:

April 23, 2004

Story

HI all, I came upon this site after I had a flare-up and my husband forced me to go to the emergency room for an incision and drainage (which was very painful). I have been living with this Bump On My Butt (BOYB) for about 10 years. I was too ashamed to mention it to anybody. I found this site to be very informative. It helped me with the decision to have the surgery. I had my surgery 2 days ago. I had 5 stitches placed. I have not removed my bandages yet. My surgery was not bad at all. I was nervous when I saw that they were going to be using LOCAL anesthesia. I did not feel a thing and the sleep was actually nice. It took about 45 minutes (although it only felt like about 5 to me). I went home after they gave me a Percocet and the rest of the day was spent laying on the sofa and trotting to the toilet to vomit. I could not hold any food or drink down. It was horrible. I finally ate some Ramen noodles about 12:30 the next morning. I had to wait for my stomach to growl to know that it was safe to eat. The next day was better. I had to get out because I am not the type of person to sit around the house all day. So I rode with my husband to the store to pick up some Extra Strength Tylenol because I was not about to take any of the Percocet. Day 3 has not been bad at all. I have not had to take any pain medicine and I have actually been sitting a little better (not so much on one side getting cramps). I have just been laying around taking it easy, playing games on the computer and flipping channels on the TV. I am about over all of the Judge shows and talk shows. I hate to admit it but I sort of miss going to work and DRIVING. At this point I am glad I do not have to pack my wound because I did not have a great experience when I removed the packing that was placed when I went to the ER. I can not imagine having to repack it. I do not think I would be able to handle that. Good Luck to all. If anyone is thinking about having the surgery....Go for IT. Best of Luck and Thanks for the website. It was most helpful. Dmommy in VA

Date:

April 22, 2004

Story

One word, ELIDEL. You've probably all seen the commercial. We got some for the baby's eczema, a real mild case on his elbows. It worked great for him, so I tried it on some dry skin on my face. It worked great there too, smooth as a baby's bottom. I had tried putting rubbing alcohol and hydrogen peroxide and many other things on my cyst to try to dry it up. Of course nothing worked, I'm sure you've all tried many of the same things. Then a couple months ago I put some Eildel on my cyst after a shower. I used a good amount just sort of blobed it on. I do this after every shower, part of my routine. Now, my pilonidal cyst is gone. No drainage or swelling or pain, it dried right up. I can press on it hard and I don't feel anything. It looks like a little dimple now. I'll need to tell my doctor, who recomended surgery. One side effect though, since I started using Elidel I get a total allergic reaction to alcohol, that sucks.

Date:

April 21, 2004

Story

Howdy folks...I'm a 28 year old male, in otherwise really good health and who runs/bikes a lot.

just found this website last January ('04) after a bout with a cyst flare-up (at least that's what I think it is based on what I've learned here). No idea how many times I've had minor 'flare-ups' or light bleeding after I banged my tailbone in soccer, biking, hiking etc.

But, WOW! has this website ever given me some peace-of-mind! I'm very grateful! In my senior year of high school(just over 10 years ago) I injured my tailbone very badly during soccer practice, landed coccyx first on a hard clay patch in the field. Much pain for several weeks/months after that. However, I noticed a couple of years later, a 'sinus' right at the top of my 'cleft'. IT TERRIFIED ME! I pretended I didn't see it! So a couple more years went by, always thinking that any pain back there was related to my old injury.

I went to my family doctor, told him I probably broke my coccyx, hoping maybe he would just notice the 'sinus'(I was really nervous), but he just looked at my back, posture, had me bend certain ways that might show indication of spinal injury, and said I looked 'ok' and that I'd just have to deal with the pain or look into really extensive surgery to fix a broken coccyx...

so more years went by, and when I was about 22 years old, I had a couple of incidences (after injuries or hard 'bumps to my bumb') with light bleeding, and yes of course the smelly ooze...

I had just been terrified with the possibilities that might be wrong with me, thought even at times I might even die eventually because of this! Never would I have known what the heck it was until I found this website! A pilonidal cyst!?!? Who's ever heard of that? So this website has been the jewel of my new courage to rid myself of the denial of my problem.

I just decided last January, 'darnit, I'm going to sit down at my computer and start doing some research of my own, and figure out what wrong with me! Within an hour, I found this site and was AMAZED!!! THIS IS EXACTLY WHAT I HAVE! A PILONIDAL CYST!!! I'm NOT CRAZY!!! THERE ARE OTHERS OUT THERE WHO HAVE HAD THIS SAME CRAZY FEAR!!!

So, now I'm in the 'build up courage to go see a doctor about it' phase. I haven't had flare ups as bad as some people here that I've read about, most of my flare ups last about a week and the cyst is never bigger than a dime or a nickel, and the pain is mostly just to the touch. I've even had periods where I could sit right on it, especially since getting into yoga a lot, I've found yoga very helpful for my butt!

But I'm getting there, especially after hearing so many success stories about surgery...

Thanks everbody, were are a special few...weird, but special!!!

Date:

April 19, 2004

Story

I have had mine lanced already and on 4-26-04 im going in for surgery to have it removed. I hope all goes well. Ill post again afterwards.

Date:

April 19, 2004

Story

Hi,

I had my surgery on February 11th and honestly it went a lot better than I expected. The anesthesia didn't wear off till around the Tuesday and when it did the pain was not severe enough that I felt that I needed to take the tylenol 3 that my doctor prescribed. I went to the clinic on campus daily, I'm in university, and the packing was not painful at all. I found it a bit uncomfortable to sit, but I found that if I sat on my sit or with perfect posture that I could deal with it. So it has been a little over two months and there is no longer as much drainage and I'm healing really well. The doctor and the nurses estimate that I won't need to get it packed anymore in the coming weeks. If you have the option of having surgery I definitely recommend it! My personal experience was that the pain factor was a lot better than when I first discovered the bump back in November when it ruptured on its own. Packing then, for the first few days was incredibly painful, whereas post surgery I experience very little pain. If anyone has any other questions you can email me at : psyche2083@yahoo.com Thank you to everyone else who had posted their experiences on this site. This site was very informative and helped me make the decision to have the surgery, which I believe was the best decision that I could have made. Take care, good luck and happy/speedy healing.

Date:

April 17, 2004

Story

My experience to date: about 9 months ago I went to see my parents at their home in Illinois, while there I decided to use their excerise bike. The next day I noticed discomfort all atound my tailbone, I figured I just irritated the area as the seat on the bike was very hard. Not so simple. Slowly and gradually over the next three or four days I noticed the pain centralized to an rea just to the right of the lower tailbone and a bump was forming. Well I drove the 900miles back to my house in some discomfort but not pain. The bump was getting biger and more painful,being totally unaware of pilonidal cysts I figured I had hemmoroids. I schedule a visit with my primary care physician and he told me it was a cyst and would prescribe anti-biotics...and then he said if it doesnt go away we will send you to see one of the local surgeons to have it removed. I was totally shocked by that, but he said it like it was no big thing. I got the anti-biotics and took them for a week and the cyst did get much smaller but definitely did not go away...back to the PCP and he said, yep, got to send you to the surgeon. Well right about this time I was switching jobs when I went to see the CR surgeon. This was by far the most embarrasing thing I have ever been through, a doctor probing all over my butt area with a nurse looking in. He told me it was definitely a pilonidal cyst and had to be removed, the sooner the better, he then told me about the healing process and all that entailed. Since I just started work with a new company a week before I couldnt just take a few weeks or more off to heal, so I told the surgeon I wanted to wait to see if it inflamed again..which he said it would. For the next six months the cyst was annoying but never got much larger than the size of a jelly bean and was not painful.....but then it came back, swelled to the size of a golfball and sitting was almost impossible. I called the CR surgeon and they told me to come right in..I did and immediately the surgeon said it had to be lanced....which was the most painful thing I think I ever went through in a doctors office. I went back one week later and we both agreed surgey was the only alternative. I had general anasthesia and the surgery lasted about one hour, the surgeon closed the wound and they sent me home with some Lorcet for pain relief. The first week wasnt to bad with the pain killers except for going to the bathroom which I found to be very unnerving and uncomfortable......then I noticed a strong smelling liquid discharging...called the surgeon and he said it was puss and to get in to see him asap! He partially opened the wound, prescribed some anti-biotics and told me to start packing it. That was 4 weeks ago, since then the wound has healed very well but is still not closed. All in all I would say the experience was about what I expected, it took about 2 weeks before I could sit in any kind of comfort and in general it was a big pain in the butt packing the wound and taking three baths a day. But now I am excersizingd feeling much better. Hopefully I will be totally healed soon. A few comments...my cyst never drained any thing before the surgery, it just swelled and was very painful. Also, if you are into physical fitness, the recovery time is almost depressing since you cant do any type of exercise..I think overall that was the hardest part to deal with. If anyone is near Savannah, GA and is dealing with this problem feel free to e-mail me at Dproto14@aol.com Oh, I was 34 when all this started which seems much older than most who have posted on here

Date:

April 17, 2004

Story

OK I had my surgery April 14th 2004 and I was very scared. I read all the personal stories on this website and they only added to the fear I had inside. I had the complete extraction surgery where they remove the cist and sinuses and leave the wound opwn. And you know what, I feel great only 3 days later!!! Of course I'm a little sore but over all I am pleased with the early results of my surgery. I take 2 hot baths a day allowing the gauze that is packed in my wound to fall out. Then I dry it out and repack it. Its a little uncomfaortable but it is not as nearly as bad as I thought it was going to be. If you want to talk about your upcoming surgery email me at mikemac@compiledcreations.com and I will cheer you up!

Good Luck!!! Michael MacDonald

Date:

April 16, 2004

Story

Well last time I wrote it was March 9th and I have three days till my surgery, well the next day on the 10th I was back in the emergency room getting it lanced open again and was being told that no matter what I had to have it done on friday. Good, I had my surgery two days later and well, as usual 2004 suck, it was huge the hole was the size of a grapefruit, and to top it all off it has been a month and I have an infection because I have healed so fast that there are air pockets where other cysts could form, so I go back in to surgery on monday to have it reopened and this time they are not letting me go back to school I am to do nothing until the doctor says i am in the clear and no risk to myself. Like I said before I will write back and let you all know how it goes.

B.R. Maine

Date:

April 15, 2004

Story

My 17 year old son has been dealing with pilondal disease since last summer (he was 16) He suffered in silence, not knowing what it was, hoping the bump, draining and bleeding would go away on its own. One week after his 17th birthday, he was bleeding profusely and finally told us. We rushed him to the emergency room, where the on call surgeon squeezed out the infection (it had popped on its own) and then he prescribed antibiotics. We had never heard of this condition and thought that would be the end of it...it was just the beginning. He has been going to the same general surgeon just about weekly since then, once for an in office surgical procedure --but... it has become infected three times since January -- just recently the surgeon threaded a wick through the two sinus openings to keep it draining) The sinus holes just occured a couple of weeks ago, due to the wound closing. So, for the last few months it has been three baths a day and constant changing of gauze. We are considering surgery in the summer, so he can get through the school year. Our general surgeon has a wonderful "bedside" manner, and seems experienced in this, but I'm wondering if this type of surgery should be done by a colon/rectal specialist. We are concerned about his recovery period -- and getting back to living a happy life again. worried mom

Date:

April 15, 2004

Story

My first cyst appeared when I was about 19 or 20. It didn't cause any pain and I began noticing a slight discharge and didn't think anything of it until it began to bleed. My family doctor examined me, left the room for about 30 minutes and then told me what it was and that it would have to be surgically removed. The wound was left open and I spent a night in the hospital. Dear old Mom had to perform the regular painful dressing changes.

Several years later I noticed a small discharge that went away after a few days and I didn't think anything of it. Not too much later I began feeling the pressure in my cleft that rapidly became worse. My 1st trip was to find a doctor since I hadn't been to one in several years since moving away from my hometown. They lanced it and it didn't get better so I was referred to a surgeon in Feb. 2002.

His first procedure was in the clinic's day surgery center with a closed wound, followed by a major incision at the hospital and 2 smaller ones at the day surgery center. There was always one spot that didn't heal -- or actually it healed too much with granular tissue overrruning everything else and keeping it from healing normally. My lovely wife has been excelent at putting up with all of the dressing changes an what not.

Everything was going OK and I began seeing a new doctor for follow-up app'ts since the other surgeon moved out of state. I thought it was all healed and then a couple of months later (Jan 2004) I noticed a new pore opening up. He did an excision in the hospital with the wound completely open. The most recent area is near the top of the butt crack so I'm hoping it will be easier to heal. I have my first follow-up app't after the most recent surgery so I hope all is well.

Date:

April 14, 2004

Story

Well my story began some years ago probably about 10 or so. Initially I just found some discomfort in the areas affected and then wow, what I thought was a pimple, so with some doing I drained it myself. well needless to say it came back again and again and again. The pain was terrible and the drainage was even worse. So finally I went to the doc, who referred me to a surgeon. Went to see him and he diagnosed me with pilonidal cysts and scheduled to have it removed. I previously went to the ER because the pain was so bad and had one of them lanced and drained, oh boy did that hurt, well that one was packed and healed nicely. So I had to have an epidural as I have a reaction to a number of anesthestics. The surgeon removed it and packed the site, well it healed nicley after about 2 months. But guess what now I have another, I have tried the hygeien thing and keep the area super clean washing the area at least 3 times a day but they keep popping up in different places. I am looking for help with this it is annoying and painful to say the least. I am going to have this one removed also, but has anyone had any success in keeping these things from reoccuring in different areas? If so e-mail me at holdmdwn@adelphia.net

Date:

April 14, 2004

Story

In 2002, I went to my college clinic thinking I had broken my tailbone. I soon found out that I had a pilonidal cyst that needed to be lanced and drained. I then went to my primary care physician who then referred me to a surgeon. After a horribly painful experience, I had been back to new. Now, 2 years later and still draining, I decided to have the pilonidal cystectomy with primary closure on Febuary 10th, 2004. After the surgery (with general anesthetic), you could hardly even tell that I had had surgery. However, about 2 weeks later, I had opened up. I was very upset about this, because now I knew that there would be a longer road of healing ahead of me. It is now April 14, and I seem to be doing good one week and bad the next. I had a hair in the wound a few weeks ago, and was told to pack it. This was very painful, and if I were able to get anything done, I had to go against doing this. But I did it most days. A week later, I saw the Dr and was much better. NOw it is 2 weeks later, and I feel pain again, and my wound looks even bigger. I am again draining a lot. I will see my doctor again on Friday in which he might decide to do the surgery again. He will then clean it out, and attempt to close me primarily once again. I just wanted to know if anyone has had a similar experience to mine. I feel like this process will take forever and am wondering if it would be better just to get closed up again. Please email me if you can share a story like this with me, or have any advice. Thanks, and good luck to all. nyckyb11@yahoo.com

Date:

April 13, 2004

Story

I can't even being to tell you how PAINFUL this cyst is. I remember the first time i got it i was probably in my third year of high school and I was in volleyball season. I was taking the bus back home from one of our games and i was leaning back on my tailbone, just like every other teenager, and I felt something on while I was leaning back, and I just thought that I bruised it or something in the game. Eventually it went away, and I didn't think twice of it. Maybe a few months went by and I was in softball season when i felt this thing again, and then I told my parents about it, and I showed them where it hurt and my mom said there looked like a bump of some sort. It hurt, but i dealt with it and finally it went away. I don't remember when exaclty the next 'episode' came back it was getting worse and it was lasting longer. I finally went to the doctor and that's when they diagnosed me. The longer I waited to do something about it the worse it got. It finally got to the point when i couldn't walk, sit, lean on the side, lean on my stomach or do ANYTHING, it was HORRIBLE. THe doctor would drain it and it would come back, then finally he suggested i get surgery and I did not want to do that. Since I couldn't take the pain anymore I decided to schedule a date for surgery. I had the surgery Christmas vacation of my freshman year in college and I don't think I have ever been more nervous in my entire life. But anyway, the surgery was about an hour and a half or so and everything went fine. The healing process after surgery was a bitch. I couldn't do anything, I felt gross just laying around doing nothing, but there was nothing I could do about it. Finally, after about a month of gauze changing and infection sucking from sticking the gauze in the little hole, it was all healed!! It has been about a year and a half since my surgery now and everything is good. No more crying and not being able to walk. Every once in a while if I lean back on it in class for too long or if i drive for too long, I can start to feel a little pain down there, but all in all there is nothing but scar left!

Date:

April 12, 2004

Story

Hey there! I originally posted on January 8th, seven days after my surgery. I just wanted to give you an update...I opted for the primary closure, mostly so that i could return to activities (e.g. school) sooner than i would've been able to had i chosen the open healing. Anyways, long story short.....The wound opened, not completely, but it did reopen. So since the end of February i've been going to the C/R surgeon to have silver-nitrate treatments. The silver-nitrate hurt really bad the first few times i was in there. Anymore though, it's just a weekly annoyance. It IS healing, just slowly and surely....so hopefully because it is taking its sweet sweet time to heal, it'll heal up right!

I wish everyone the best of luck with their pilonidals.....just remember....everything turns out alright, so if everything is not alright, it is not yet the end....

~Samantha Saminomaha@aol.com

Date:

April 11, 2004

Story

I just want to say right off the bat how comforting it is to see so many people going through the same stuff that I have (and still am, currently). Up until now, I've always felt like such a freak because of this damn cyst. Anyway, I just wanted to share my story with you. It's probably not anything you haven't heard before, but I'd just like to get it all off my chest, if you don't mind.

I'm a 22-year-old male, and the problem started for me in December 2000 during my freshman year of college. Like many of you, I just started experiencing a shooting pain in my tailbone out of nowhere (it felt like someone was hammering a chisel into the top of the crack of my rear end) which made sitting and walking pretty excruciating. After being diagnosed with a pilonidal cyst, I had it lanced and drained the abscess, and was feeling phenomenal the next day (especially after feeling so miserable the previous two or three). However, the general surgeon who did the lancing advised me that to prevent it from swelling again, I should have the cyst removed. Like anybody would at that stage, I followed my doctor's advice.

I had the cystectomy two weeks later (feeling completely fine in those two weeks leading up to the surgery, by the way) with the local anasthesia. I think a lot of you know what happened next. I woke up with a giant bandage on my behind, was in a lot of pain for the first few weeks, spent a lot of time in bed hopped up on painkillers, dealt with the incredible annoyance of changing the dressing twice a day, and the humiliation when someone would do it for me, etc.

Well, slowly, it got better. Eventually the bleeding stopped and it would only drain that greenish, foul-smelling ooze (your friend and mine). After several months, the drainage stopped too, and I thought I was finally rid of this horrible condition.

However, since that time, I've had so many ups and downs with this stupid thing that I just can't take it anymore. I've fallen into a pattern now where it'll seem to heal completely, then one day I start feeling a little pain, use the toilet for "number two," and all of a sudden, I've got a toilet bowl full of blood, and the cycle starts over again. It most recently healed around last September, but then just this past January, it flared up on me again, and as of this moment, it's as bad as it's been a long time, with significant draining AND bleeding every day. Sometimes, I even get the dreaded underwear stainage.

I've been to several different doctors since the surgery (including the one who performed it), but nobody can really seem to help me. They all just say to be patient and keep it clean, and the last one told me that even a second surgery is no guarantee that it will fully heal. I'm starting to see now that he's probably right. What's even more annoying is that my friend developed it about 18 months ago as well, but he just had it lanced once and didn't have it removed, and he hasn't had a problem since. Why did I have that stupid surgery?!?

I just don't know what to do anymore. I can't accept the fact that I'm going to have to live with this for the rest of my life. The effects of it aren't just physical, either. It's really hard to have confidence in yourself when you're always preoccupied by sitting the wrong way or bleeding through your pants. It's done a number on my love life as well, as I'm just not comfortable being naked in bed with a woman out of fear that she'll notice why on earth my rear end is leaking.

I'm not sure what anyone can do to help me here, because everything I've read from the site seems to imply that some people get over it, and some people (like me) just don't. But I thank you for reading and letting me into this commmunity. Being here will help psychologically, if not physically.

Date:

April 11, 2004

Story

About 12 years ago, I slipped on some ice and banged my tailbone so hard I'd thought I'd broken something. Since then, I've had this small moveable pea-sized mass at the bottom of my tailbone. There was never any pain or discomfort, so I ignored it.

A few days ago, the lump swelled up to about twice the usual size and became tender. Upon inspection, I noticed two tiny dark dots at the top of the butt crevice.

Thinking this was something minor, I did some research on the internet and like most of you, was completely HORRIFIED by what I learned. I was sure there must be SOME kind of accepted non-surgical treatment, right? Wrong.

I am simply stunned by the barbarity of the surgical process. With all the modern tools of medicine, there isn't a better way to treat these cysts than to remove the proverbial "pound of flesh"?

OK, so maybe the phenol treatment to "burn" the sebaceous and hair producing tissues of the cyst didn't work, but to me, that seems like an avenue for further research. Once the cystic tissues are no longer active, you could probably inject some kind of inert filler into the "tunnels" and "channels" to fill in the sinuses.

After all, they have laser and chemical treatments to kill unwanted hair follicles on other parts of the body, and they have all manner of substances to inject under the skin to fill in wrinkles, so why do people with P.C. need to end up with 4 inch gaping wounds that are 3 inches deep?

Anyways, after my complete panic, I shaved the affected region, applied hot compresses, and repeatedly applied (and quickly removed) duct tape to the area in hopes of removing the "plug" and/or any hairs that might be stuck in there. This seemed to work and my cyst has shrunk back to pea sized and resumed its inert nature. Hopefully it will be another 12 years before I have to deal with it again. Or at least until the recommended treatment no longer sounds like it came from a 16th century surgeon's manual.

Best of luck to all of you out there.

Date:

April 07, 2004

Story

An update on my story from June 8, 2002 (Archive #9): While re-reading my previous posting from 10 weeks after my excisional surgery, I'm reminded once again of all I have to be grateful for. It is now almost exactly two years since my excisional surgery and it is important to me that I revisit this website to report that my surgery was 100% effective, I have had no complications or further flare-ups, and my life has improved immeasurably since my surgery. After 25 years of pain and suffering, I finally feel free of pilonidal disease. I even took a three-week driving trip last summer with no ill effects--not something I would even have attempted a few years ago. For those of you new to this problem, my advice is not to wait until your pilonidal cyst takes over your life. Granted, everyone's experience is different and a minor surgical procedure may be the answer to a one-time occurrence. However, for long-term problems in which excisional surgery is indicated, there's no need to be afraid. Take your life back!

Date:

April 07, 2004

Story

Although I am not sure, I believe I first noticed drainage from my cyst about 5 years ago (I was 18 at the time). I did not feel a lump or anything, my only symptom was my underwear would frequently have stains in them (kind of embarrassing).

The draining persisted for several years (sometimes worse, sometimes I didn't notice it) untill about a year ago (just before my 22nd birthday). While in the shower I noticed for the first time, a lump just below my tailbone ( about the size and shape of a large peanut. I pushed on it and a large amount of fluid squirted out. I had it checked shortly after and was advised that, since it wasn't painful, it would be best to just deal with it (and my stained underwear).

After a few months of dealing with that I decided that this was not a sufficient solution. In addition, the cyst began rupturing up through the skin (previously it was strictly below the surface). After several more months of procrastination, I finally went in and was diagnosed with a pilonidal cyst. Immediately I read up on the subject as much as possible (this site proved to be quite helpfull. . .thanks). My doctor advised that we remove the cyst under local anesthesia and heavy sedation. In the days leading up to the surgery, I was freaking out due to the numerous horror stories I had heard about and read on the web. Nevertheless, I underwent the procedure.

Results: -the procedure took an hour (I slept the whole time) -Pain was minimal the first several days, it increased after that for a couple more days, however the pain killers worked wonderfully :) -after a week, I was back at school and work, although I moved a bit slower, pain was mininmal -after 2 weeks pain was not an issue, keeping the wound clean and dressed was starting to get to be a hassle -after a month I no longer needed to place gauze over the wound -after 3 months I would call myself back at 100%, the wound is probably 95% healed

Some comments: -one small portion of the wound stalled in its healing process. It began oozing and I freaked out, thinking the cyst had returned. Went to the doctor and it turned out that it had simply stalled in the healing process. He swabbed some silver nitrate on the area (this burned quite badly). It bled and oozed for a couple days then felt fine. Only a week after he did this, the healing process had resumed and the small area had nearly caught up to the rest of the wound. -you'll find a lot of claims that this problem recurs in about 40% of patients. My doctor has performed hundreds of these procedures before and claims that the number is much more like 10%. -Also, my doctor had little appreciation for packing the wound. In his experience it is no more effective than keeping it clean and covered. Also, my doctor had little appreciation for primary closure or any other "new" techniques.

To put it in terms that most people can relate to, I would say that the treatment of my pilonidal cyst has been less painful and inconveniencing than getting my wisdom teath removed. Yeah, there is some pain for a few days but it healed pretty quickly. I know everyone has different experiences, but I wanted to post a story that I would classify as optimistic. Good luck to everyone else out there, I know how embarrassing and disruptive this disease can be.

Date:

April 06, 2004

Story

Wow...well today was a big day for me. My pilonidal cyst came out. About two years ago, I went to have a "knot" on my tailbone looked at. I was scared even though I work in the medical field I had NO clue what was wrong with me! The ARNP I went to see that day said it was an ingrown hair and that it would drain out. I was given a good dose of antibiotics (yay, gotta love 'em.). Ok, the knot didn't go away. My MD I regularly see referred me over to a surgeon. I'm 21, never had surgery in my entire life. I was scared to death of being put to sleep. I'm not in as much pain as I thought I would be, it's more or less just an annoying sort of pain. The nurse anesthetist said "You're really gonna have a pain in the ass now!" and laughed. haha, he's right lol I'm just so glad I caught it before it got majorly infected. Good luck to anyone out there that's having it done. Anyone with questions, ask me, I don't mind sharing my experience with ya.... mustang_babe98@yahoo.com

Date:

April 02, 2004

Story

I wrote recently that I thought I had a Pilonidal Cyst in addition to Herpes. I had another flare-up of red bumps and since my doctor was out-of-town, I was referred to another doctor. For the first couple of visits, my original doctor seemed to be treating me for both, i.e. he didn't seem sure of whether I had one of these conditions, or both; the 2ND doctor said I would REALLY be in pain if it was a Pilonidal cyst. She seemed to think it was just the Herpes (I had been getting flare-ups once or twice a year before I even knew about Pilonidal Cysts).

So I am just letting people know that you can get Herpes in the Pilonidal "area" and that may be all it is.

Date:

April 02, 2004

Story

I had my first cyst when i was about 18 years old. I was tearing off a roof of a garage and sat down on the peak of the roof to take a little rest from all the work i had just done and felt an excruciating pain surge through my tailbone area. That night after I took my shower and toweled off I was drying that particular area off and I again felt an incredible pain there. So I felt around and found a very large lump there. I went to the local emergency room the next day and the attending doctor referred me to a specialist right away. I went and had the cyst drained from the doctor and he told me if it recurs to come back and he will have to surgically remove it. I never had a problem with it until about 18 years later , now in my early 30's, I am having constant trouble with the cyst and I have had it lanced and to no avail it has come back over and over again. I am about to have it surgically removed. I do hope that this surgery takes care of the problem. I am not one who likes pain, but i can deal with it , if it is going to make me better in the long run. I am not by far an unclean person , so I ask myself how can this happen to me. I have found other reasons as to how I could have gotten this cyst, and to my surprise, I have found a great amount of literature on the subject.

Date:

April 01, 2004

Story

I have read many of the stories and I am fortunate mine sounds like one of the better ones. I am 22 and I have had a PC for at least a year. Once I got around to seeing my dermatologist about it he told me I had a Pilonidal cyst and to see a surgeon. I ended up getting surgery on march 24th, closed method. Doctor said it was about an inch in diameter with 2 'arms'. I have about 4 inches of stitches in my crack right now.

For surgery I was first given some kind of relaxing drugs via IV. In the OR they did a spinal block which completely blocks feeling from the waist down. It was strange waking up and not being able to move my toes at all. After the spinal they put something else in the IV and I went to sleep. This is definitely the best method of anesthesia I have heard after reading various different stories on this site.

So far since the surgery I have a constant feeling like someone is poking my ass with a stick but its not bad. He said not to sit down for 2 weeks so I have been working from home standing up or laying in bed with the laptop. Stitches come out 2 weeks after the surgery.

I do have a hairy ass and I sit in a chair at work at least 9 hours a day so that is probably what caused it. Luckily i can telecommute or this would be a huge disruption in my life. I thought I would be tempted to sit but its extremely painful so no problem avoiding that. Laying on my back is also very uncomfortable.

Well that's about it if you have to get surgery closed method seems good to me, no packing of the wound and after 2 weeks you can sit again. I'm on antibiotics to prevent infection and I will have to shave or Nair on a regular basis to prevent future occurrences.