Personal Stores Archive #32

Date: August 30, 2006

Story

I am a 25 year old female who is dealing with this pain. My cyst is now at this time swelling up again and I am in tears from the pain. About 2 years ago I noticed it and had it lanced by a doctor. It has come back since three times but I have been able to take care of it with antibiotics. This time is bad again like the 1st time. I cant even think at work cause all I am thinking of is the pain I am having. I am scared to get the surgery though and knowing the sugery is not 100% makes me not want to have it done more. I just don't know what to do anymore about this. Someone help please with advise...

Date: August 29, 2006

Story

I'm a female and I'm waiting on my 6th surgery now. I feel so hopeless. With every surgery, it has always come back 6-8 weeks after each one without fail! No matter how careful I was and how clean I kept it, even showering for the last 3 years twice a day! I have had 2 open with packing, one closed with a drain tube, and one Z-plasty. I no longer have a crack from the Z-plasty and yet it still comes back! It's now flat with a "Z" shape scar. Now I'm totally disfigured and only 35 years old! My 1st surgery was the smallest one with an open incision of 3 inches long, 2 inches wide, 2 inches deep! My husband was ready to pass out when he saw that! The next two were about 6-8 inches long each! The Z-plasty was very painful and I couldn't sit for 6 weeks for it to heal as they had to change my skin around. Has anyone heard of Furuncle-Med salve? They advertise it on the web, haven't seen it on anyone's site yet. I'm only 30lbs over weight, so for my 6th surgery, I'm trying to lose weight as that's the only thing I can think of to change to help this! But it's always so painful, I can't lay on my back to do sit ups, or even use any of the gym equipment. Since 1998 I've had 3 kids, 5 surgeries, and work full time! Needless to say ALL my vacation time each year has been used to treat this and it's getting kind of depressing!

Date: August 29, 2006

Story

Hey, I'm a 17 year old girl in Canada, 6 weeks after open surgery for my pilonidal cyst. I'm SO glad for this site, when I went in to talk to the surgeon he was really abrupt, and it was only because of this site that I was able to keep up. We decided to do the surgery, the surgeon said it was optional because he didn't think it was that deep. It didn't really hurt unless pressed/stretched, but it earlier had a nasty infection. I had local anaesthetic [maaaan, those needles hurt!], and joy, oh joy had the experience of the surgeon saying it was deeper than he thought: 6cm, and it would take at least 8 weeks for me to heal. Anyways, like I said, I'm on my 6th week and doing well. I still can't over-exert myself, and I wasn't able to move really for the first 2 weeks, before very gradually improving. I hope it will go strong from there! Thanks a bunch for the site, it's helped me SO much in understanding everything that's happening to me. Good luck to everyone else. : )

Date: August 26, 2006

Story

I wrote here a month or so ago. I've been self-treating by removing puss. It went away. I guess the infection has just gone away temporarily and will flare up again in the future. I'll worry about that when it happens.

Date: August 25, 2006

Story

Hi, i'll get right to my story. I'm aged 16 from England. I first noticed i had a Pilonidal Sinus when i sat down and felt some discomfort and slight pain just right of my tailbone. Soon enough, despite being embarrassed, i shown my mum and she suggested going to the doctors. The first doctor didn't know what it was, but referred to to another doctor. He confirmed it was a pilonidal sinus. I noticed it'd actually get in a lump sometimes, filled with puss. I popped it, although i've been advised not to pop it from now til its gone. I am trying to get a hospital appointment to get my sinus removed. Hope it doesn't hurt, that's all i'm worried about. Keep up this great site, thanks alot for all the posts : )

Date: August 21, 2006

Story

Hello to all, I had to write, after reading this site over a month ago. I was scared out of my wits to allow my daughter (16 years old) to have the surgery to remove the cyst. From all the horror stories that were posted I don't see how anyone could go through the surgery. Well, three weeks ago my daughter had her surgery, she has a eight inch suture line with nine stitches, her surgeon performed a primary closure. Her surgeon is a general surgeon, so to make the general assumption that all general surgeons are not equiped to handle this pocedure is in my opinion absured. The surgeon stated that she does approx. 3-5 of these surgeries a week and has only a 2% infection / failure to close rate that in my research is far better than most Colo/rectal surgeons.

As a nurse I can not stress that the incisional area must be keep extremly clean/bandages and free of hair to reduce the rate of infection and re-occurance. My daughter is doing wonderfully, she was only on pain meds for two days and is back at school and driving. Also please don't wait until the abcess ruptures, the infection rate and rate of reoccurance in much higher when surgery is performed when the area in inflamed amd infected. These types of cyst will form the cystic sack, months prior to becoming abcessed and rupturing. We monitored my daughter's for one year before the pain (rubbing on her tail bone became so severe that we seeked surgical intervention.) May God bless and please be under the care of a physican, it is not a pleasant experience and one tha can be sucessfully medically treated.

Date: August 19, 2006

Story

Hi, I thought I'd share my story with everyone. I am a 30 year old male. I first noticed some drainage back when I was a senior in high school(1994). I had no idea what was causing it so I just ignored it until it got infected for the first time. I went to urgent care and was diagnosed with a pilonidal cyst. They said minor surgery will take care of it. I had the closed method with local anesthesia. Wow! The local is probably the most painful thing I have ever endured. Plus sitting face down at an angle listing to your skin get cut was not pleasant either. Sorry don't mean to scare you just being honest. Well I was healed up and back at work in a little over a week.

It was fine for about 4 years then it came back again. Had my 2nd surgery(another general surgeon) in 2000. Open method this time and I was put under(way better option in my opinion). Dr said it was the biggest one he'd seen(removed about a tennis ball size of flesh). I, ok, my Mom had to pack it every day for what seemed an eternity. I was out of work for about a month. The thing never did heal 100%. So after another year my old college roommate suggested seeing Dr. Goldberg(a colon and recal surgeon) in Minneapolis(I am from MN so it made it easy). He wrote the book on these things...seriously he pointed to it on his desk on my first visit :) I was expecting a 3rd surgery but instead on my first visit he made a few small cuts and told me to rub the area everyday and make it bleed. So that's what I did and in about 6 weeks he said I no longer needed to come in. I haven't had a problem since and I'm very active playing softball and volleyball. My advice to anyone with a pilonidal cyst is to see an expert, a colon and rectal surgeon. Don't let a genereal surgeon try to fix this. Hopefully that's the last for me! Good luck to all you dealing with one of these...it truly is a pain in the you know what!

Date: August 18, 2006

Story

First I want to thank everyone who has shared there story. After a week of having pain last night i decided to puncture the swelling, so i can get all the fluids out, with the help of my wife i did and was able to get most of the puss out. It lessened the pain and the swelling. One thing i don't understand is that i have no hair inside of the hole and all that comes out is fluids. Is there any one who has the same situation and what do you do to deal with the pain and getting the puss out at home. Need home remedies to ease the pain and drain.

Date: August 18, 2006

Story

It's the day after my surgery, and I feel much better than expected. I was very nervous during the morning prior to the surgery. Once I was called, they set me up on the stretcher and hooked me up to an IV. The anesthesiologist gave me something to help me calm my nerves, which helped out a lot. When it came time for the surgery, they wheeled me into the OR. Within seconds, the anesthesiologist had me knocked out. The next thing I remembered was waking up in the 1st recovery room. I wasn't in any pain. My mouth and lips were very dry, and my throat was sore from the breathing tube. After that, they wheeled me into the 2nd recovery room where family can visit you. I got up from the stretcher and was placed into a recliner. There was a considerable amount of drainage fluid on the stretcher. The surgeon stitched me closed, however he left in a small drainage tube so that fluid could drain out. For the most part, it's only slightly red.

I was sent home shortly thereafter, and my antibiotics and Perkaset (sp?) prescriptions. I was fearful of the pain after the local would wear off, but, almost 24 hours later, and still feel no pain whatsoever. I've had to change the dressing every few hours as the fluid drains, but that's about it. I've been very thirsty, and my mouth has been very dry - but if that's my biggest concern, then I'd say all went well. I will be seeing the surgeon again in a few days to remove the tube and sutures. I'm keeping my fingers crossed in the hopes that it never comes back, and that it all heals ok. Good luck to all of you! Thanks, Matt S from NJ

Date: August 17, 2006

Story

I first started to notice a pimple-sized growth in the early Fall of 2005. I at first thought it was nothing, but within a week's time, I had to get to the emergency room because of all the pain. Shortly thereafter, I met with a doctor for a lancing. This was the most painful experience I had ever felt because the local anaesthesia did not work, and the doctor did not seem to care (sorry for scaring some folks - my advice: make sure the doctor confims the local has taken effect before beginning). After a brief recovery, I thought all would be well. Five-six months later it came back, but this time it would drain on its own. About once a week, for months thereafter I would deal with the nuisance, and constantly debate surgery. Now it is the Summer of 2006, and I have my surgery scheduled for today. I'm a bit nervous, but I am hoping for the best. Thanks to all those who developed this site, and have shared their stories. I wish you all good luck! Thanks, Matt S from NJ

Date: August 16, 2006

Story

I'm a 32 year old male and just had my 3rd pilonidal cyst removed. I had the first one around 10 years, then the second one around 5 years ago, and lord and behold just had it removed for the 3rd time last week. Each time I was completely put under and felt no pain and the Doctors, all 3 times, decided to use the "closed" healing method. After reading most of the people here having had the open healing method, I wonder if that's my problem. Anyway, I'm slowly doing better now and I'll check in with everyone in another 5 years when I get it for the 4th time....

Date: August 15, 2006

Story

Hi, I am the 42 year old woman who first posted on June 24th. I had my surgery on May 31st,with a wound I could fit my fist into, and had my tailbone exposed. I was on a wound vac for almost 9 weeks, then packed the wound for two weeks by myself. I have posted twice already , and said I would post one more time when I am healed. Yesterday my doctor released me, it took right at 11 weeks. I feel so much better, I pray it never comes back. Good luck to all those who are dealing with this, it's one of the worst things that I have ever been through. But, when you have this, you HAVE TO get it taken care of. Research and inform yourself, find a specialist, and get it taken care of, if not, it can only get worse. Good Luck..............and thanks everyone !!

Date: August 15, 2006

Story

I'm a fourteen-year-old girl with other medical conditions (Hidradenitis Suppurativa, PCOS) and at one point I was overwhelmed with what the discovery of these conditions meant for myself. My first flare up scared me a lot. I was used to dealing with odd things, but the pain I experienced was something very new. It hurt, but not horribly, and I had an over all stiffness in my lower back. I had to lay on my stomach most of the time (it lasted for a few days) but I could also manage to walk around a little. A few months later I discovered my mother and grandmother had both had the condition. For a long time, because my mother no longer had it, I felt very alone and didn't know whom to turn to until I started doing some research. I still have alot to go through to get rid of it, but there are much worse things someone can have.

Date: August 15, 2006

Story

Well, after two flare ups and the surgery 18 years ago, IT'S BACK!!!!!!!!!! I am so upset I can't sleep. right now it is just tender and about the size of a marble. The thought of the pain, the lancing and draining that is to come is almost unbearable! It is worse pain than childbirth! I have 4 children and went through those with out so much as a Tylenol. This is much worse pain. And of course at this point in my life I have no medical insurance. I think I'd rather have half my butt cutt off than do this again!

Date: August 11, 2006

Story

I suffered from a pilonidal abscess when I was a senior in high school, 20 years ago. I had had mild pain for a few days, like a bruise. Then I woke up with a very hot, very hard knot at the top of my buttocks, right where the crack ended. It was huge, and I was in such terrible pain that walking to the bathroom was agony. The only comfortable position was lying on my stomach. I went to my pediatrician, who told me to lay on wet wash clothes with a heating pad underneath on low heat for as long as possible. I missed school all week as I soaked and steamed the spot.

The pain finally got better on the fifth day, when I noticed that there was a small head at the top of the swelling, and the spot had become much softer. While poking at the soft part, pus came out of the small head, and I spent ten minutes gently squeezing the smelliest brownish white fluid out of the abscess, soaking half a box of kleenex as the abscess deflated like a balloon. It didn't hurt much to get the pus out The relief was like nothing I had ever experienced before. Later that day I went back to my pediatrician, who practiced barbaric medicine on me by using a scalpel to open the now deflated skin and remove any pockets of fluid I hadn't been able to squeeze out, without any pain killer! I think it hurt worse than the abscess. She said I probably needed to have surgery at some point but just to soak and keep the area clean for the timebeing. My father is a physician, so we consulted a colleague of his about whether to have the cyst surgically removed. He did not want to remove it, but recommended I keep the area clean and shaven, soak whenever I felt similar symptoms coming on, and wait to see if it recurred. I have done just that for the past 20 years, and other than the other than the occasional soreness from sitting too long, and one or two times when I needed to soak more agressively, I haven't had any more issues. Knock on wood!

Date: August 09, 2006

Story

Hi! As most of you know these things can be extremly painful. I am a 22yr. old female and my problem began about when I was a Sophmore in High School. At first I didn't think anything about it. A couple of days went by and the pain began to be just too much. I went to my doctor and he prescribed antibiotics and pain medication. A few days later it had gone away. It never reocurred until about a year and a half later. Again I was in aggonizing pain, went to my doctor and again was prescribed antibiotics and pain medication and sent on my way. Well, as it turns out my family doctor that I had had for years was transfered to another health clinic. So, I started to see another Dr. at the same clinic as my old one. About another year and a half had past and AGAIN it was back and more serious than the last two. The first day I started feeling discomfort, I knew exactly what it was. Like a dummy though I thought it would go away in a couple of days, so I didn't do anything but try to deal with the pain.

Finally I had had enough and went to the emergency room. The Dr. told me he was going to lance it and it would be alot better, so I agreed. Here he comes with the needles to numb the area, I thought that pain was bad. He started with the scalpal before I was numb. I felt every bit the metal going through my skin. I thought it was normal, hell I had never had one lanced before. Aside all of the pain, afterwards he gave me a prescription for pain meds and I felt alot better.

So about a year later ITS BACK! I call my Dr. after about 2 days, I go in for my app. he gives me pain meds., antibiotics and tells me to get someting called Ichthammol Ointment (Black Sav) to draw all of the fluid building up to the top, tells me to come back if it gets worse. Two days later I'm back and its now about the size of a golf ball. He tells me he is going to lance it and we go to a different room, the nurse comes in, and they begin the procedure with no masks on. By the time they cut it open they decided to put the masks on. These things can produce such a foul oder. They pack it and I go back everyday for them to unpack and repack it, it finally healed up. About a month ago (three or four weeks since the last flare up) I went to vist my grandparents about an hour and half away and again I felt the pain. After a few days of excruciating pain it pops on its own in the middle of the night with the worst oder. I go to the Dr. the next day he refers me to a Colon & Rectal Surgeon, he sets me up for surgery the following week. Its been 2 weeks since, I'm in little pain. I've had to pack & unpack 3 to 4 times a day for 2 weeks. I went back yesterday for a check up & all is going well.

Date: August 09, 2006

Story

Hello All! I've been keeping up with this website for a while now and decided finally to add my story. I'm 23/f originally from California, but I am currently living in Utah. My problem started when I was in 9th grade and just had a lot of pain in you know where. I was too embarrassed to talk to anyone about it. By senior year, the cyst was visable and bleeding every once in a while. Figuring that I should find out what it was before I went to college, I showed it to my diabetes specialist who at first thought it was a huge zit and then told me that it must be a wart and would go away within a couple years.

As the years went on, infections started to get worse (probably flaring up twice a month and wasn't hurting me as much as some of these stories i've been reading), until finally a few months ago I got sick of it all and started researching it online and figured that I had a pilonidal cyst. I made an appointment to see my Dr. the next time I was home. She confirmed that it was a pilonidal cyst and told me that she would refer me to surgery. I didn't hear back for about a month, when I started calling my health organization. they WOULD NOT return my phone calls and I ended up calling them multiple times a day until putting in a complaint. Then my dr. finally called me back personally. She obviously couldn't remember who i was, let alone meeting with me (she started talking about symptoms that she said I had, but never have had). So, they made me an appointment and I flew in to California from Utah so that I could use my parents insurance before I get kicked off. I went in today and they lanced the cyst and told me that only 1 out of 5 people need to come back. So, now i have a hole that is about 1.5 inches long and .5 inches deep. It is packed now, but the Dr. said that tomorrow I can take out the gauze and i don't have to pack it again, just have something to catch the draining such as a pad. I'm really hoping that lancing takes care of this situation so that I can get on with my life! The dr. said that it was a small one and not bad at all, so i'm crossing my fingers. Good luck to all of you, i've just been very grateful for this site to answer all of my questions!

Date: August 08, 2006

Story

Here I am again. Sitting in my office chair with this agonizing pain. This started a few years back, but it didn't flare up badly until my wedding day November of 2004. I went to an urgent care clinic near home and they told me it was a boil and lanced it packed it and sent me home, the pain during the lancing was excruciating, I felt like I could really hurt someone at that point. When they repacked it, I insisted they not try to numb it first as that was just more painful. It healed well and I was fine in about a week. After that...I was fine for a while and then about 6 months later, I was 4 months pregnant and "Helllloooo." It's back again. This time much worse. I put it off for a few days, dreading the painful lancing and packing I knew was inevitable. I went to my regular doc this time....still don't know how I managed to drive. Because I was pregnant she didn't want to mess around. She immediately sent me to a proctologist, who finally told me what I had. He put me under and did an incision that night. The next day I felt like a new person.

I had my precious baby girl (which by the way was not painful at all in comparison to the Pilonidal) and was fine for exactly one year. Then here we go again. I called the good doc. He told me to come in, we did the whole thing over again in much the same fashion. We scheduled an open excision surgery for 3 months later so that the swelling could go down, reason: he won't have to take more than necesary out if it's not swollen. So I have been worrying over the suregery for 2 months now...and then BAM. This stupid thing is BACK again. Now I am frustrated,and in agony I already paid my deductible this year, so I wanted to do the surgery before Dec. NOW I will have to have the damn thing drained again and then WAIT...which will put me into the Holidays and all. I am just so frustrated. I am a stage actress and I have a show opening on Friday...with this??? I hope I can act well on stage doped up, because that's the only way I am going to be able to appear. GRRRRR. A Piece of advice....if a doc has advised surgery...DO IT WHEN HE SAYS....don't wait. If I had done this before when he told me to, I wouldn't be in this shape AGAIN. Dureing Yet another important time in my life. Feel free to email me, I have become quite the Pilonidal expert as you might all understand :-) imactingup21@hotmail.com -Manda

Date: August 07, 2006

Story

I wasn't going to die. That seemed clear. But after four days of this cyst getting bigger and bigger, I knew I had a problem on my hands. I had had one of these before in my early twenties, but it was more of an annoyance - bleeding - then finally going away. I had heard about them being much worse and simply hoped never to have the problem again. Now, ten years later, I'm 34 and it's back with a vengance. After only a day, I called my doctor and got on an anti-biotic - Keflex. Day one - no help. Day two - no help. Day three - I'm back at the doctor ready to undergo whatever would procedure would ease the pain. I've been paying privately for a couple of years to be a patient of an "executive physician," and I have never been more grateful for this type of access to superior healthcare. I could barely drive myself to my doctor's office.

I arrive. I hobble to his office and am seen instantly. He takes one look and declares that I need surgery. My fear of course is how long it will take to arrange that. His patient coordinator places a personal call to an area surgeon who to my amazement agrees to see me right then as a favor to my doctor during his lunch break. I make my way to his office where I am wisked to a procedure room. 20 minutes later, I'm on the road to recovery.

A few words about the surgery.... The injections to numb the area were the worst part by far. When the surgeon tells you, "this will be painful," you know you're in trouble. It was. He cut a hole about 1.5 inches long and at least as deep and drained the cyst. This was last Wednesday. It has been five days, and I feel almost back to normal. I returned the next day for his nurse to teach my wife how to unpack and re-pack the wound. I hate this - for a host of reasons - but it is less painful each day. And I find that the wound will accept less and less of the gauze tape each day as it heals from the inside - out. I pray this never happens again. But my advice to anyone dealing with this situation - get the surgery before it gets totally out of control. All things considered, I wish I had done it a day earlier. I think it would have been less traumatic. For anyone in the Richmond, VA area, I would take a serious look at the Executive Health Evaluation program at the CJW Levinson Heart Hospital run by Dr. Randy Baggesen (www.executive-md.com). He is an amazing doctor without whom, I would not be sitting comfortably on a chair typing this right now. My surgeon was Dr. Santosh of Surgical Associates of Richmond - also brilliant, good natured and compassionate - as was his wonderful nurse Brenda who taught my wife how to deal with this wound dressing. Best of luck to all of you with this problem. Tom

Date: August 07, 2006

Story

Hello, I am a 33 year old male, that had surgery last year, the Sunday after Labor Day. I have had recurring pain, soreness, discharge etc, for about 15 years, but that weekend the pain was more intense than I have ever felt. It started really hurting on Friday while at work. I was sitting most of the day, but by the afternoon I was walking around my desk while making phone calls. A co-worker and i drove to beach (about three hours) to meet up with our families for the weekend. By the time I got there I was unable to sit, stand or lie down with intense pain. I couldn't sleep that night, and was in excuritating pain on Saturday. My wife drove myself and the kids home on Saturday evening, which was a very long three hours.

By sunday morning I had not slept again, and went to the emergency room. The doctor took one look and said I needed surgery. After a few hours of phone calls, we had located the specialist in the Baltimore area and I was in suregery at 1pm. By 8:15 I was watching the Ravens lose to the Colts without needing pain medicine (it was amazing). I was discharged the following afternoon after an intense wound dressing. That was very painful. For the next 10 days, my wife and the occasional nurse changed the dressings. By the third day, it was fairly routine. The incision was about 3 inches deep by three inches long, so not overly large by some standards. I had stitches and a week later, I was basically fully healed. I have occasional minor pain from the sensitive skin in the area but that is. It has been a year and I can say the surgery has been a success (knock on wood). This website was a wonderful in helping me understand what it was, the surgery and the healing process. Good luck to all. Thanks. Rudy

Date: August 05, 2006

Story

My 17-year old son recently had pilonidal surgery. He first noticed an issue approximately 1-year ago, but we thought it was just a basic injury. He went to the pediatrician twice this winter, but the Dr. didn't diagnose the problem, and just gave my son a basic antibiotic. Late winter and early spring, he started bleeding and was in additional pain. He first went to a general surgeon, who immediately diagnosed pilonidal sinus with abcess. My son had a large abcess on his left cheek and the surgeon beleived there were about 6 open sinuses. The general surgeon explained the radical open wound surgery, icluding the 10-12 week healing period, packing, etc., and we pictured my son essentially missing his whole summer.

We performed significant web-site research, including this site, and learned of the modified Bascom surgery. We made an appointment for a second opinion at Boston Children's Hospital, but cancelled and made an appointment at Massachusetts General Hospital when we realized pilonidal affects young adults more so than older teens, and we wanted a doctor with maximum experience. My son saw Dr. Peter Masiakos at General Hospital. It turns out he is a pediatric surgeon, and he advised he sees approximately 1 new case every week. He also advised most Boston surgeons only know the older radical open wound surgery, but that both in pediatrics and in other parts of the country, the modified Bascom surgery is the "standard" procedure.

He theorizes Bascom will become the "ordinary" within a few years as more surgeons are properly trained in the technique. My son had his surgery 4 days later. He had the abscess removed. It was connected to three open sinuses, which were removed through the cheek incision. There were also two other uninfected open sinuses, which were removed with a very small pit, and the Dr. used this opening to insert a drainage tube. Within about 10 days, he felt significantly better with almost no pain nor complications. He was bleeding from the open pit after the drainage tube removed, but it was clear healthy red blood, and was to be expected. The bleeding was not heavy nor caused any discomfort or difficulties after we realized a simple gauze pad kept in place with a basic knee band-aid took care of the health needs.

Within another week, the doctor removed the stitches from his cheek, and declared him healed. The doctor does want us to explore laser hair removal to minimize the probability of reoccurance, and did remind my son that extra hygeine is always the better choice. We were very lucky to find Dr. Masiakos. The modified Bascom procedure allowed my son to undergo full and complete medical needs with only about a 2 and 1/2 week odyssey. He didn't miss his summer. I am very confused by medical science. Many people have had the same or slighter pilonidal needs than my son, but were subjected to the old-fashioned radical open wound surgery, for no reason and for no net gain. The modified Bascom surgery creating the sidewards incision in the butt cheek can be done in almost every situation, yet many doctors either are not aware of the opportunity or do not have the training. TV has spoiled us to believe Dr.'s always are up to date from medical journals, but maybe that's not true. Whomever is reading this site and this posting are doing themselves the first favor in educating themselves on the medical issue and possible types of treatments. If you are like me, and view the radical old-fashioned open wound procedure expoused by a surgoen, or as I was saying "it's like killing a fly with a sledgehammer," keep researching, interview doctors and insist on your medical rights. There's no need for such medeival and archaic practices in this time. I wish you all the best of health, the best of doctors, and the best speedy recovery, just like we were able to provide to our son. LJD 8-5-06

Date: August 05, 2006

Story

It's amazing how simple or complicated this problem is. I'm 20 and come from a small town called Albany in Western Australia, i hadn't even heard of pilonidal sinus until i was diagnosed with it in January 2006. Basically it was a little hole with a little bit of discharge and nothing a little surgery could fix. I had a double rotational flap in early february; i had 15 stitches and a drain comming out of my lower back when i woke up, but i was in good spirits because i didn't have much pain and i was looking forward to having a rest from work.

Three weeks later i drove back up to perth to start university again; the stitches had come out and everything was fine apart from a small area that hadn't quite healed. I live on campus in student housing and also perth in the summer is extremely hot. Needless to say i got a staff infection. It wasn't too bad and i went on some antibiotics and it mostly cleared up within a week, apart from one tiny red area. I went off the antibiotics, the staff came back very quickly and strong. Within a week the wound had broken down and i was bleeding and leaking pus, not exactly what i had in mind for my third semester at uni. I went back on antibiotics for three months. The antibiotics didn't help at all. I was left with a 5cm long hole that was 2cm deep that wouldn't heal and two more sinuses that opened up underneath. I had the wound dressed everyday for the entire 4 month semester, i tried to carry on as normal but it was very difficult.

The doctor on campus tried everything to heal the wound, even applying proxide to burn the dead tissue away but nothing worked. To cut a long and miserable story short i finished the semester and returned home to have another operation. Unfortuantly the months on antibiotics gave me a cold that i couldn't shake which then turned into bronchitus (that how you spell it?). Had to wait 6 weeks before being well enough to have the op. I had the op two weeks ago: July 19. It went well; the surgeon managed to stitch me together and it's healing well so far. This disease pretty much has put my life on hold. Since my first surgery i've been sicker than i've ever been, had to defer uni, quit sports, move back home and give up my social life. It's amazing how this little thing can occur in an area that proves to be so vital to everyday movement. To anyone suffering from this disease i am very sympathetic. This disease is hard to talk about and to accept. I hope everything goes well for those who read this and remember no matter how bad it gets karma eventually evens the score. Well i bloody hope so anyway! Cheers. Nev.

Date: August 03, 2006

Story

Currently I am sitting on a special bed tha feels like sitting on air. This would be surgery number 3 for me, first I got a removal of the cyst senior year of high school. A week in bed and I had high hopes but by christmas they new it wasnt going to be ok. Time kept passing and things got goofier and goofier. Movies and school meant putting a "tampax" in on the wrong side (I apologize if i get anything like tampon or pad mixed up im a 19 year old boy). Everything just kind of got worst. I because more self concious, I felt like fooling around with my then girlfriend was a punishment to her because it smelled, sometimes alot sometimes a little. But I just learned to live with it.

I went through freshman year of college with it too, and 18 year old freshman meeting new people, alone for the first time, and I have to worry about pant stains. Luckily I had friends who helped me laugh about it because its nothing I could control. Sometimes you have to laugh because this disease is just god's little way of teaching us to drop the pride, something many people will never learn. Of course there were times I would scream at my parents or argue with the doctors, but in between it just laugh. I had to give up my freshman year springbreak for a 2nd surgery, he kept a constant dressing in, I didnt understand it but at this point im using a plastic surgeon not proctologist. Which leads me to what I want you all to know about. *This is important and could help you* I had a "rotational flap" put inand then stitched up, no healing from beneath, a term im sure youve all heard. It is healing almost perfectly so im told. And all I will have is a hairline scar, which I hope you all agree is one hell of a trade off.I have given up 3 weeks of my summer but I in know way see it as an unfair trade. I will finally have some sanity back when I cross campus and do not do a "rear check" after every class. I just hope maybe a few of you will dicuss this with your doctor and get a referral to a plastic surgeon if you need to. Or maybe this is just a crock and something all have you have already tried. If you want to know anymore of my story email me at el-conkey@sbcglobal.net GOOD LUCK TO ALL OF YOU!!!!!!

Date: August 03, 2006

Story

hello.Im Kieron from Ireland and iv just gone 17 years old.Around this time last year i went into the E.r.My natal cleft was hurting me so bad , i had a really high tempature and i was in cold sweats.I didnt know what was wrong with me.On top of all that i was wateing in the e.r for about 5hours(and i couldnt even sit down) till i got seen to. I finally got called so i went in and the nurse was haveing a look at me to see what was wrong.I just said i have a really bad pain on my butt crack and so she was looking at it and called another male nurse.He started pokeing at it and i was in such pain i bent the bar on the bed i was on.He done that for about 3-4 mins and finally he stoped and he said there might be a ingrown hair.So off he went.. and i was lieing there with my dad and i was just thinking... I could not feel a thing.. the pain was gone and i could feel this coldness around my butt crack.

In the meen time i paid no attention and i got my bood taken and was sent of asap for tests and the before i new it i was being rushed into theatre at 1am because the Pilonidal Abscess that i had , had burst and was spreading into my bloodstream so i was told but... how did it burst?the male nurse burst it when he was pressing on it. I got the Abscess draind and then woke up back in my bed at the hospitl.For the next week and a bit i went through pain which i never thought was possable to just a young guy like me. Every morning i hated wakeing up to the fact that i had to get it packed.I was also told that i wound was a good fue inch`s deep.I also was very sick for the next fur days with a very very high tempature from the Abscess being burst and i had constant vommiting after. So time past i got out of hospital and the next year of my life flew by. So now.. here i am and today i had the first appointment with the hospital since september. The hole from the opperation is still open and is ready to be opperated on to take out the sinus. So the doctor said it looks ok.. and so now im getting opperated on the 25th of october and thay are stiching it up which is a big releif for me because i couldnt go through the packing process again :(. Ok Now heres my question... I am getting opperated on the 25th of october and me and my family are going on vacation on the 12th of November and i was just woundering if i will be able to go?The doctor said i should be good to go.. but everybodys diffrent..... Anybody got an answer?

Date: August 02, 2006

Story

Hello. I just wanted to say that both my husband and I are very thankful for this website...because of the many stories, information links, and other sources, we were both able to receive a lot of information about pilonidal disease, and make an informed decision regarding my husband's treatment. My husband Ron is 35 years old, and has lived with pilonidal disease for about 20 years. He has been misdiagnosed (bruised tailbone!!), lanced and drained with no painkillers, and dealt with numerous flare-ups over the years, including one where his cyst burst in an airport shortly before his flight back home (thankfully it wasn't on the plane, for it was so bad he needed to purchase a new pair of pants before boarding).

 Prior to surgery, the affected area contained four known sinuses, and the abscess had tunneled pretty deep inside his body. He had suffered with an inflamed abscess off and on for about a year, and his general practice doctor recommended surgery. Well, the surgeon took one look at the area and felt it should be operated A.S.A.P. because of the infection. We took some care in choosing the surgeon, and selected one who had performed over 100+ operations on pilonidal cysts, with a very, very low rate of reoccurrence. Because of the shape and nature of the wound (full-blown infection), we decided to go with the open wound surgery, with the 2x a day change of packing routine. From reading testimonies on this site, we took the advice of others and took steps to boost Ron's immune system prior to surgery. I ended up purchasing a juicer and have Ron on a regimen of fresh juice every morning, mainly immune-boosters and fuel for regenerating tissue (ginger, protein powder, carrots, pineapple, beets, to name a few....). We are both vegetarians so eating more vegetables isn't really a stretch; however, we cut out any type of fried foods completely, and took out caffeine, alcohol, and nicotine (no occasional cigars for my husband!).

The surgery was on Monday, July 10th, and appeared to be successful. The area was bigger than the surgeon suspected, and he needed to cut out a larger area. All in all, when it was done, the opening was about 5-6 inches long, and about 1 1/2 inches wide on the outside. The inside expanded out to an area about big enough to accommodate my fist. Needless to say I was pretty overwhelmed when I saw it and with the upcoming task of packing it 2x each day!!! Honestly I wasn't sure if I could do it at first, but I will say to those of you who may be faced with this task in the future, you CAN do this, and you do get used to it only after a few times, and you will really be doing a service to the healing person if you agree to help out with their bandage-changing. I took a picture of the wound to show Ron, but he didn't want to see it (at least not yet). With what is involved in changing the dressings, we both can't believe how difficult it would be for those of you who are faced with the task of packing and cleaning your wound on your own. We did read about some of the alternatives with packing (gel/gauze change every 2-3 days; closed wound stitching, for example), but if you do have the option of having someone change the bandages twice daily post-surgery, you should seriously consider this option because it really has seemed to keep the area clean and free of any infection during the healing process.

My husband went in today for his three-week check-up and is healing so quickly he is way ahead of schedule. The abscessed wound is already around 50% full, with healthy, pink tissue. The pain that he experienced during the first week of bandage-changing is almost gone (thanks to the dying nerve endings, and there is very little blood present on the bandages. What is heavy is the yellowish-green discharge found as a by-product to the tissue regeneration. There is so much of this fluid that sometimes I even change Ron's bandages thrice daily when the bandages get soaked.

I know this is lengthy but I did want to mention a few things that we've noticed that make Ron a little more comfortable with the bandage-changing process, that might be of some help to those of you going through this right now: (1) We've tried different types of packing gauze, and found the "MedLine Bulkee II 6-ply 100% cotton" bandage to be the best for packing. Not only is it softer and less porous, it is 100% cotton, latex-free, and doesn't stick to the wounds inside, like other types of rolled gauze. We wet the gauze down prior to packing with saline solution and squeeze it out prior to packing. I also keep the saline in the fridge; not only to keep it longer-- my husband says the cooling sensation of the gauze feels better when packing inside the wound. When packing the wound, I actually loosely "roll" the first 4-6 inches, creating a "cushion" for the bottom of the wound, so that while you pack the rest of the gauze in, you aren't pushing on the bottom so hard. I line the bottom of the wound with this piece, and then continue stuffing. I use one of those long q-tips to help pack the corners, and also push down with the flat end of the q-tip instead of the very top (it doesn't hurt as much, according to Ron).

After filling the wound, I put 2-3 pieces of gauze over the opening, and then layer an ABD pad over this. (2) For taping, I use 3M's Mediapore 3-inch cloth tape-- it's REALLY expensive as far as tape goes, but it will keep any rash on the skin to a minimum. Ron broke out really bad in a rash from some of the other medical tapes out there. (3) Also, for extra safety, Ron uses a pair of disposable underwear (Depend)-- get the type with the cloth-like feel, extra thin; the elastic around the top helps hold the bandages in place, reducing your independence on heavy layers of tape. (4) We found a medical supply site where we could purchase large amounts of supplies at a discount rate, since our insurance company won't cover the packing materials. So far we've gone through over 120 ft. of gauze, not to mention any of the other supplies, so you may want to look into this option if your insurance will not help on this expense.

Again, it hasn't even been a month yet, and my husband is healing up very well. After about 8-10 days of being off of work post-surgery, Ron was able to get back into somewhat of a regular routine. He does have to schedule a small period of rest (usually a nap) somewhere in the middle of the day for about 1-2 hours, because he gets very tired if he doesen't (well, his body is rebuilding tissue). Overall, he feels a LOT better even now, because he does not have to deal with that ongoing infection that was present in his body for so long. If you are facing this surgery (or someone you know and love is), please know that although it can be an extended process and may involve a period of soreness and healing, it is only a temporary condition, and, after all is healed, you have a wonderfully pilonidal-free existence to look forward to. This is truly a difficult disease to live with, it is comforting to Ron to know there is a good chance that he will never have to deal with another painful, messy infection again.

Date: August 02, 2006

Story

Well guys and gals it's Christopher again (LagunaChris611). I just went to my doctor after he has been nuking my wound with Silver Nitrate for the past week, and he said it only healed 5% in a week and there is probably more than 3/4 left to heal. It looks like I will need another surgery because he said if it doesnt heal more by Monday we will discuss other options. E-mail me if you want...Man, life is hard.

Date: August 01, 2006

Story

Hi everyone, I am the 42 year old female who posted on June 24th.I had my surgery May 31st, I was on a wound vac for a little over 8 weeks, Doc took me off it yesterday. My wound started out the size of my fist, now it's the size of the last joint of my thumb, I will be using Silva Sorb Gel for about two more weeks, you pack the wound using the gel and a gauze, it will be another two weeks for it to totally close, but, using the gel you only have to pack it every two to three days, I chose the gel because of that reason, packing with just wet to dry dressing has to be done twice a day, and now I'm doing all the packing by myself, so I chose the gel to avoid the 14 times a week with the wet to dry. It has been a long road, but, I'm almost done now.If I have any advice for you, it would be........choose open wound healing, and if the wound is very large like mine, I suggest you use a wound vac, it makes healing 50% faster, and the dressing changes are only three times a week. This is one of the worst things that I have ever dealt with, and I wish the very best for all those out there dealing with this. I will post one more time when I am totally healed. Good luck all !

Date: July 29, 2006

Story

Hi,my name is Candi and I am 22 yrs. old. On July 26, 2006 I noticed some pain and minor swelling at the top of my crack when I woke up. Thinking it was a boil (similar to ones I get on other parts of my body;under arms & breasts, inside of thighs), I figured I would leave it be and it would pop when ready. The next day when I got home from work, I could barely sit or lay down on my back. The day after that, I was in terrible pain! I remembered that my brother had a cyst drained a few years back, so I called his wife to find out the particulars. She said it was a Pilonidal Cyst. I googled it and came across this site. Although not entirely encouraging, it was very informative. I was not even going to be able to see my GP for 3 days (and I don't do the ER) so I bought some Tea Tree Oil and thoroughly cleaned the area (that was incredibly painful) and then swabbed on the TT oil. I did that once before I went to bed and 2 more times once I woke up. When I was ready to get in the shower, the cyst appeared to be coming to a head - in 3 spots!

Once finishing my shower I noticed a clear slime running down my butt and legs, then the pus and blood started. I rinsed it out with warm water then started wiping while applying some pressure. The smell was like rotten eggs! I soaked a wash rag in hot water and packed against the seeping cyst then sat down. The pressure of sitting was pushing the pus out. I repeated this process for over a half hour until the drainage slowed. I got ready for work and put on 2 maxi pads, which have had to be changed twice in 2 hours. This brings me to now 1:15am now July 30. I am in hardly any pain and am able to finaly relax. I still plan on seeing my GP, maybe see about lancing the cyst and completely draining it. I want to avoid surgery because of potential complications and costs. So I will give an update once I see my GP. :)

Date: July 29, 2006

Story

I've been aware of my cyst for about 15 years now. I used to have terrible drainage, it was very embarrassing. We were learning about cancer in health class, and I became worried that I might have some sort of cancer, so it was time to tell my parents and go to the doctor. The surgeon I talked to knew what it was, but didn't know much about it. I had 2 surgeries to remove it, but it came back both times. Don't go to a surgeon who does not know how to remove it properly! I have also been told it has a high risk of coming back, even with proper removal (heal with an open wound, no stitches). This time it doesn't drain, so I have to keep it as clean as I can, because the flare-ups are pretty painful. It only flares up about once every 3 or 4 months. I've been blessed to have a friend with the same problem, so I learned a lot from her. It sucks, but it's something I just have to live with. Surgery at this point, for me, is pretty pointless.

Date: July 29, 2006

Story

Hi My name is Chris Waters, and I am 35 years old, I live in Binghamton, New York. I have had my cyst for Nine years. I just had it removed two days ago. My problem started one week after my mom passed away. I had the worst pain I could ever expect. It began as what I thought was a boil, I used drawing salve for it to come to a head, I had a fever every day for a week and it was just horrible, I did everything I could to make that thing burst, but nothing would happen, I didnt sleep for a week straight with this pain. Then one day I was at work, I am A food service mananger at a hospital. I was standing on the patient trayline checking the food trays and all of a sudden it burst. There was blood and pus everywhere, I had to stop my job, go home and change. What a relief though, i never felt such relief as in that moment right then.

 This thing then went away for a number of years, with no other thoughts of it. Then about five years ago it came back, with a vengeance, hurting like hell, staining all of my clothes with pus and blood, making my life miserable. I did what i could to relieve the pain, when I could. The next five years would turn out to be horrible, with it coming and going, staining many of my dress shirts and having many embarrasing situations where I might even get fluid on someones couch or chair at their house, i was nervous about going to visit anyone with the possibility of ruining their furniture. I am not one to go to doctors unless I am really sick, so i suffered through it for all that time, until this past February, when my sister forced me into having a physical, where I found out I had diabetes, high blood pressure, high cholesterol and Sleep apnea. I am a big man, 6'4 over 350 lbs, so I expected some health concerns, while I was in the office, i asked the doctor to look at my boil, which he then confirmed was not a boil, but was the pilondial cyst instead.

Well he sent me to a great surgeon, Michael Barrett, who I totally trusted from the begining, and found to be a very competent man and also very nice. We proceeded to drain it for a few visits until i could find time to schedule the procedure. Its embarrasing to go into a doctors office and lay on a table with your ass in the air, but it had to be done. I scheduled the surgery for July 27th and anxiously waited for it to happen, with flareups coming and going. The day came and I was very nervous, due to not having any surgery before. The day went wonderful, the nurses, the doctor, everyone was great, I had my surgery at 1:30 and was gone from the hospital by 4:30, with no pain or discomfort. I had a relatively large one, as I actually had two, one had tunneled into another one, so the hole is relatvely large, but I am dealing with it, I have an open wound, so its kind of disgusting to look at it, but if u dont see it, its all good. I am very happy with the surgery thus far and have had minimal discomfort. I thank Dr. Barrett for a wonderful surgery and the people from Lourdes Hospital who did such a wonderful job. I will keep you updated as of my recovery. I am looking forward to a week of relaxation.

Date: July 27, 2006

Story

Hi. In high school I developed what I now know was an infected Pilonidal Cyst and Sinus. At the time I had no idea what it was and was told by my parents that it was just a large pimple or an infected ingrown hair. They told me just to watch it and see what happened. As a junior in high school, I had little patience and went into the bathroom and started "messing" with it. It was extremely painful and had a reddish white discharge that omitted a foul odor. After what seemed like hours of pushing and prodding and gallons of discharge, I managed to "pop" my cyst. The moment it popped it made a noise like I will never forget. The force with which the discharge exited the cyst was extremely violent and painful. After reading the information posted on this site, I am shocked to learn what I had was an actual medical condition that often requires surgical intervention. I still have a sinus just under my tailbone, but it has never again become infected. However, now I am more aware of personal hygeine in that area.

Date: July 25, 2006

Story

I worked with someone who explained they put off dealing with their Pilonidal Abscess (because of not knowing what it was) FOR 6 YEARS!!! On the way to the hospital they had to sit backwards in the seat on their knees and now, after the surgery, they claim to have a hole twice as big as their anus!!! Incredible!!

Date: July 25, 2006

Story

Dear Pilonidal.com, My name is Drew and I live in St. Pete, FL. I recently (5 mon. ago as of July 24, '06), developed a Pilonidal abscess and I didn't know what I had! I searched online with the term, "pain above buttocks", and "hole above buttocks" which I must admit both terms brought about some very amusing results. I eventually found a medical site that explained a Pilonidal Cyst/Abscess and explained what to do about it. I'll also admit I got scared at the fact I might have an extra hole down there that will be stuffed with gauze for 4 - 6 weeks!! But I sucked it up and went to a doctor. He explained that because I found it so early that, most likely, anti-biotics would clear it right up. Being a pre-med, (and an ex-pill popper/medical "expert"), I knew how to take anti-biotics, and I know the signs of how to tell the infection is gone. I believe I truly understand embarrasment because of the "neck pillow" I converted into a donut to be able to drive to work. Thank you for letting me share, and I hope everyone who runs into this "problem" for the first time will find your site because it is extremely helpful. Sincerely Yours, Dr. Drew (not the celeb!)

Date: July 24, 2006

Story

Well, mine starts about five or six years ago in High School. I didn't know what it was, and just kinda put it off. There were a few times it'd flare up and get real bad, but I was too embarassed. I joined the Army with it with no problems, even after a doctor had looked at it during my initial physical. I've only had it flare up twice since being in the Army -- The second time horribly painful right after I got back from a deployment to Iraq. I decided to try and get it removed completely, at all costs... I went in April 4th, 2006, to see a doctor about it. They scheduled me for surgery on April 26th, and I waited patiently. Then it got bumped to May 24th. Then June 6th. Then June 14th. It turns out that was just the date for the pre-admission unit screening and stuff, and I finally got the surgery for July 8th. Except some insurgents decided that it'd be fun to shoot some of my fellow soldiers, and the general surgery team ended up being overwhelmed at Walter Reed, and called to reschedule me to today... If you're active-duty, and stationed in the MDW area, Dr. Copeland at WRAMC is *the* person to talk to. She knew exactly what procedure is best, all of it. I had it taken care of today, and I'm feeling little pain. Hopefully it's gone for good!

Date: July 22, 2006

Story

I probably have it the easiest here, i have been suffering from this "disease" for 3 weeks, no irritations, no pain, but just continuous bleeding from a small damned lump on the natal cleft, my doctor prescribed me antibiotics and the bleeding has greatly reduced and the lump has shrunk and its getting better day-by-day.

Date: July 21, 2006

Story

Hi everyone, I'm Earl from Indiana. My story starts about 10 years ago when I noticed a bloody puss discharge from my tailbone area. My doctor at the time told me it was a cyst and not to worry about it if it didn't bother me. The only time it seemed to drain was when I was stressed so I didn't worry about it. About 2 1/2 years ago it finally reared its' ugly head!! I was getting out of the shower drying off when I noticed what looked like an ingrown hair that was very red and sore. I barely touch it and it exploded with blood everywhere. I went to the doctor and he had no idea what it was. He thought that it might be a spider bite, so he gave me some antibiotics and sent me on my way. Well, the antibiotics cleared up the infection that was there but nothing else.

So, back to the doctor I go and again he was clueless. I tried to deal with it for about 9 months and finally switched doctors when we moved. My new doctor knew what it was before I even finished describing it to him. He referred me to a surgeon in July of last year. The surgeon took one look at it and said, "Hum...never seen one like that before." I should have ran away then. The sinus had actually came out about 8 inches away from my tailbone on my left cheek. So after talking with several people who said this surgeon was good, I scheduled my surgery for August 5. The day after ( and every day for 3 weeks) I went to the hospital to get my dressings changed. It was then that I found out why my ass hurt so bad....I had a hole big and deep enough to put a softball in!! He told me it would be healed in 6-8 weeks. O.K.!!! In January it still wasn't completely healed.

 According to the surgeon there was a cavity that had healed over with a sinus leading to it that would not heal. My only option was another surgery. Fine, on February 20 I had surgery number 2. This time he stitched it shut and everything was great. Until 2 weeks later when the last of the 15 stitches were taken out. The very next day the wound got infected, swelling up to about a 2 inch hump. I freaked out!!! I call my surgeon and he tells me to come in the next morning so he can look at it. He ends up lancing it which turned into an incision about 4 inches long and 4 inches deep. That was in March, the incision has almost healed except for that same sinus. So now I've seen a colon rectal specialist and will be having surgery number 3 in September. This specialist has been a miracle. I would highly suggest anyone with a pilonidal cyst to see a specialist not a general surgeon. There is so many more options that they know. I'll let everyone know how this next one goes. Hopefully it will be the last one!!!

Date: July 21, 2006

Story

I was in college, maybe 19-20, when I experienced pain near my tailbone. Anyway, at the University of Iowa hospitals, I was told I had a pilonidal cyst, which they drained. At that time they recommended surgery. After the cyst had completely healed, and I was out of school for the summer, I had the cyst removed in the hospital, and the incision was closed. I stayed in the hospital for several days (I remember I couldn't eat much other than food that would "stick" with me, as the doctor didn't want me going to the bathroom). I have never had another incidence or flare up, and am fine to this day. This was 35+ years ago. However, several of my male cousins (I'm female) were diagnosed with this, and had their cysts drained (many times), but never surgically removed. They had a lot of problems. My ancestors are all Italian, and I consider myself hairier than most (thick eyebrows, arm and facial hair) but not overly so. Isn't the hair and the location of the cyst almost exactly where a tail would grow on a lower species?

Date: July 21, 2006

Story

HI, NICOLE 21 YEAR OLD FROM GLASGOW, SCOTLAND JUST WANTED TO LET EVERYONE KNOW HOW MUCH TROUBLE I HAVE HAD WITH MY PILONIDAL SINUS, I FIRST THOUGHT THAT ALL IT WAS WAS A SPOT ON MY BUM AND DIDNT BOTHER GETTING CHECKED OVER BY MY G.P BUT IT KEPT LEAKING AND WOULDNT GO AWAY SO AFTER NEARLY A YEAR I WENT TO THE DOCS AND SHE TOLD ME WHAT IF I WANTED SURGERY SHE COULD REFER ME AND THATS WHAT SHE ADVISED ME TO DO SO I WENT ALONG WITH IT. A FEW MONTHS LATER I GOT A A PHONE CALL AT WORK TELLING ME THERE WAS A CANCELLATION AND COULD I COME IN ON THE WEDNESDAY 15 FEBRUARY 2006 I SAID YES WENT IN AND HAD A BIT OF TROUBLE WITH THE NEEDLES AND STUFF BUT FINALLY GOT TOOK TO THE OPERATING THEARTRE AT 16.00.

I AWOKE AT APPROX 17.45 STARVING AND WANTED FOOD SO BADLY BUT ALL I GOT WAS A SLICE TOF TOAST AND A CUP OF TEA, I FELL ASLEEP NOT LONG AFTER THAT AND WOKE THE NEXT MORNING AT 6 DYING TO GET HOME THEY FINALLY LET ME OUT AT 11.00 THAT MORNING I GOT HOME AND MADE AN APPOINTMENT WITH MY G.P NAD NURSE THEY WERE APPALED THAT I HAD BEEN SENT HOME WITHOUT ANY DRESSINGS ON MY WOUND AND THEY TOLD ME TO TAKE 2 WEEKS OF MY WORK, THIS IS 5 MONTHS LATER AND AFTER YET ANOTHER VISIT TO THE HOSPITAL I HAVE BEEN INFORMED THAT I NEED TO BE OPENED UP AGAIN WHICH MEANS MORE TIME OFF WORK WHICH MEANS LOSS OF EARNINGS AND SINCE I HAVE JUST PASSED MY DRIVING TEST AND BOUGHT A CAR I DONT KNOW IF I CAN AFFORD TO KEEP MY FIRST CAR NOW, SO I JUST WANTED TO LET OTHERS KNOW THAT NOT ALL THINGS TURN OUT GREAT AND IF ANYONE HAS ANYTHING ENCOURAGING FOR ME FROM THEIR OWN EXPERIENCES PLEASE LET ME KNOW AS I JUST CANT SEE THE LIGHT ANYWERE. NMCPINK@YAHOO.CO.UK THANKS.

Date: July 20, 2006

Story

Well everyone. It's Christopher again (LagunaChris611). I just got back from seeing an Armenian colon and rectal surgeon. The news was brutal yet comforting. This was the most compassionate man ever, and he spent more time with me and my mother than my surgeon did all the times I have seen him. Pretty much he said I would need another surgery to get my wound scraped out and then have it packed. He said like it is now it will never heal, and that is truly my only option. I trust this guy more than I trusted the surgeon who performed my surgery...I am very upset; frustrated; confused; and unhappy-but this guy understood and said "it breaks my heart to see this, you are too young to be here." I will never forget those words because they mean a lot to me. It's a battle that I will eventually win, I just need to decide if I am ready to fight or not. E-mail me with your thoughts. Christopher E-mail: LagunaChris611@AOL.com

Date: July 20, 2006

Story

My Cyst appeared to me 1 year ago in June when I had to have it painfully lanced. Ever since that day I have kept a close "feeling" to that spot whenever it felt like it was getting sore to the doctor. I did not want to chance having it lanced again. For me when they lanced it had already been there for two weeks bothering me and I was on a full week of a fever of 101 to 103 F everyday and excruciating pain in that lower part of my back. I went to the doctor assuming it was my tailbone but he said no it is a pilonidal cyst and recommended me to a general surgon. It took all of 1 day for me to decide to go because the pain was so bad I could barely sit. After I met with him he gave me vicodian and he said he wanted to lance it ASAP. So the next day early in the morning I took 2 Vicodian met him at the hospital for the outpaitent lancing. When He did it he put lidocane in but my nerve endings were so sensitive it hurt a lot. I did my share of screaming cause it hurt so bad. It was so much better after he lanced it. I could sit without it hurting as bad and my fever was going away. I was very happy with the result. He had to warn me it wasn't gone which it wasn't it would occassionally let me know over the next year when I would over do lifting or get in stressful situations. It was a little annoying to my life. I just graduated from college and at the time I was learning to be a band director. We have equipment to move and I had student teaching to. These factors made me choose to get my cyst removed. *I also did not want it to get infected again*

So I had my cyst removed June 19, 2006. I really did not know much of what to expect except for what I read can happen on the internet. My doctor told me before hand that they will inject blue dye to see the bad stuff and it will be a closed excision. Well I got there like everyone else early in the morning. They called me back I changed got hooked up with an IV. They actually gave me anti-nausea medicene and fluids. After that they moved me somewhere else and they took my glasses away so i couldn't see. So bah. :D I met the anesthiaologist he told me they were going to give me saddle bag anesthesia with a nice drug on the side don't really remember the name of it.

After all the nurses introduced themselves they wheeled me to the Operating room. And much from there is a blur I didn't feel a thing. I woke up in recovery and from there went to the room. One negative to the saddle bag anesthesia is it is a spinal so you cannot feel you lower half for I think it was 4 to 6 hours. It stunk. I couldn't really move I didn't like it. I was getting pain becasue I didn't know I had to pee because it was numb. So I figured that was the problem called the nurse and I went and it fixed the problem. Negative is something called a bed pan. One Positive to the saddle bag was I didn't feel much pain until 3 hours after surgury. But I kept trying to stay out of pain. I guess it is bad when the cyst goes down to your tailbone. That is what the doctor said. So he even gave me the option of morphine. I tried it and it works really fast. Only positive *but it wore off really quick.* Because of how deep he had to go he put me on IV antibiotics and had me stay in the hospital overnight. I was laid up only for as long as I had the stitches which was a week and a half. After that the stitches held and I was worried about sitting at first i didn't want the healed skin to break. But it is fine and I am sitting now. I am encountering an issue of pain and the insion line has always been a blood red color that isn't a problem is it. It only hurts when I sit for a while. Like writing this. :D That is my life and deals with the disease. K.Funk

Date: July 19, 2006

Story

Hi, I was looking at the FACTS on the home page about Pilondal Disease and noticed that it stated that children as young as 12 have been noted to have this. Well, my youngest daughter had this at the age of 6 months. Well, I should say that she had the surgery at the age of 6 months. So I felt impelled to relate our story. My dtr was a normal birth, regular weight, good height, etc. Our family doctor was so upset with himself when I called him the night I found the cyst. He stated that normally (as was her case) the cysts cause a dimple and that she most likely had the dimple at birth. He was upset with himself that he had not noticed the dimple. Of course, it's not a regular place to look at on a baby (the top of the but crack - natal cleft) but he felt he should have seen it. Her's was not even that easy to see because her's was down lower in her crack. At about 5-6 months of age, I was giving her a bath and she was very fussy. When I got her out and started dressing her, she was all wiggly (more than normal) and somehow she ended up on her belly. I can't remember exactly how I noticed it, like I said it was kinda hidden in her bottom. But when I saw it, I thought it was a boil. It was red, and somewhat swelled looking and pussing. I tried pressing around the edges of it to relieve some of the pressure and then called the doctor. He saw her the next day and new exactly what it was. He called it a Pilonidal Cyst, but as the home page here says it was probably more of a sinus. Anyway, he had me take her to a Children's Hospital and it was removed.

At 6 months of age, my baby daughter had to have surgery, but it was all for the best. She goes to daycare, so I stayed home with her for about a week and cleaned the bandages and such. It has to stay opened to heal from the inside out. Basically, if she had a dirty diaper, we would have to clean it out with warm water and soap mixed together and let it air dry. They weren't easy days, I mean she was 6 mths of age, but it wasn't hard. It healed about half way in that week (it wasn't very deep, not like they can get) and then I had to take her back to daycare, I had to go back to work. The daycare she goes to is wonderful. I explained to the aides and director what needed to be done and at what times and they did exactly that. The rest of her "wound" healed up in about another week or so. We had to go to a handful of follow-up visits and everything went so well. I know that they can come back, and I have a friend who has never had surgery on hers and if she bumps that area at her tailbone, it causes it to get infected, etc. My dtr is lucky, in that her's is hidden more in her crack and not so easy to hit.

She is now 2 1/2 yrs old and as spunky and rough and tumble as any other toddler if not more. I thank our doctor, the specialist, the hospital - who did so wonderful with her, and everyone else involved in caring for our youngest one. I didn't mention the hospital surgery, but that's a good thing. They had to give her anthestics at 6 months of age. The surgery took about an hour, if I remember right. All together, I think we were only at the hospital for half the day (from beginning to end). It was an outpatient surgery. She was so young and they all just adored her! She's a strong little girl! Let me reitorate, she was 6 months old when all this happened and, so far, 2 yrs later, everything continues wonderfully! I know it could come back, but I pray it doesn't. The only mark that shows it was even there, is a small scar where the skin healed together. So yes this can happen to anyone, at any age. But, if you can trust your doctors and feel good about the decisions you make, it is something that can be dealt with. It may not be as smooth as hers (hers was a smaller one, but just as painful), but it can be dealt with all the same. Just wanted to encourage others who might be going through this. If a 6 month old can go through it, then there is hope for everyone!

Date: July 17, 2006

Story

Ty from Australia here again. Posted a few weeks back, thought I would drop an update. had my surgery on Fri 30th June. Was out of hospital the following Monday. Apparently everything was good, Am in no pain and was told healing is going well. Had the stitches taken out on the 14th July, but The tissue between my crevice has not healed and I still have 2 openings after the stitches were removed. Am freaking out cause I have seen the same kind of picture here on this site. Looks like it hasnt gone well for me. At the removal of the stitches my dr said that it will be another 3-4 weeks till it heals properly. But it looks like its stopped healing altoghether. I'll give it another week, see how it goes and if it hasnt changed I'm definately going to go see him. Seems I've gone in with a mild case and come out with 2 more of them. Fantastic! Just what I wanted to know. I wuld have been better off putting up with the mild inflamation every couple of months, Hope everyone else is having better luck. Will keep in touch...

Date: July 14, 2006

Story

Dimitrios from Melbourne again, i had my cyst removed via karydakis procedure 9 days ago. Pain wasnt anywhere near as much as i thought, with the ability to shuffle around, dragging an IV rack and a drainage tube after a few hours of awaking from the anaesthetic. I havent dared sit down (other than on the toilet) since ive spent the last week or so at home, lying on my stomach. Occasional stretching pains if i turn or move suddenly. I have a checkup with the surgeon in a week, hopefully to remove the stitching, which looks pretty impressive. Very manlike, if it was anywhere else id have another neato scar to flaunt. Cant really win respect with ass scars lol. I'm told it will disappear through a bit of time. Bottom line, recovery seems imminent, dont mess around with the suckers. Have them cut out. Worth the effort.

Date: July 14, 2006

Story

My story started out about 15 years ago. I had one of those old waterbeds with the wood sides. I sat down on the side one morning before going to school and just about jumped through the ceiling. The pain was so hoorible. I told my parents, and us believing I cracked my tailbone, went to the dr. The dr. told me I had a cyst on my tailbone and he could not frain it, but if it got any bigger he would remove it. I went home and after a week of kids making fun of me at school(due to the donut pillow I was carrying around), I didn't notice it anymore. Every once in a while over the last 15 years I would feel it flare up. Then about 2 weeks ago, I woke up to take a long hot bath, and when I sat down in the tub, I screamed in pain. I felt the area and it was quite obvious that my cyst was visiting again. This was the worst pain I had since first learning 15 years ago. I went to see my dr. that next day (Thank goodness they have emergency hrs on saturday). She told me that it was a Pilonidal Cyst and referred me to a surgeon. I went to see him Tuesday after bearing this thing over the weekend. He scheduled the surgery for Thursday morning.

When I woke up from surgery, I was in a great deal of pain (the dr. removed a cyst almost the size of a golf ball and an abcess the size of a large marble). My mother drove me home after 2 hrs. in recovery. My mother went to change my packing that evening and found the whole just above my rear. It is about 3 inches long, 2 inches wide, and 1 1/2 inches deep. SHocking. It is a week post surgery (I went back to work on Monday) and I had to go back to the dr. yesterday because my mother noticed a small growth in the center of my incision. Well I have another cyst forming (screams). I now have to go through this again, but not as bad. Well I cannot wait until I am healed. I will tell you, having a scar and the healing process is much better thatn living with one of these cysts. I will update after the removal of my other cyst on Monday.

Date: July 14, 2006

Story

Hi, my name is Ian and I live in Auckland, New Zealand. To start, a few years ago I noticed that hair and fluff were starting to accumulate in the upper part of my crack, which had previously not occurred. This freaked me out enough to pay special attention to cleaning out this area when showering and so on. Unfortunately, my luck ran out recently... 3 1/2 weeks ago, I noticed a small lump just around my tailbone area, which was a bit painful when I put pressure on it. Not knowing anything about pilonidals, I thought I'd injured my tailbone area in some way, and left it to its own devices. It gradually grew larger and more painful, and I started to have problems with sitting down - especially when driving. Finally, after a week or so it was large, red and angry. It remained like this for three days, during which I experienced an almost surreal feeling of consciousness (I guess I'd hit what the Buddhists call nirvana, but only for a short time), where the only thing I could feel was the pain of the pilonidal. It was during this time that I discovered this website (I Googled tailbone lump and this was the first hit), and I've been thankful every day since, as it prepared me for what I've been through since.

Two weeks ago today (a week and a half after I first noticed it), I felt a sticky mess around my tailbone area when I woke up. Fearing the worst, I quickly headed for the bathroom, and I saw that the pilonidal had started draining... and the smell was indescribably bad. Sour milk, sewers being drained by sh*t trucks... nothing compared to the smell of what was coming out of the pilonidal. In desperation, I cleaned up the mess with toilet paper, and stuff a piece into the area where the leakage was coming from. Three hours later, at work, I needed to go to the bathroom, and when I was there I found that the toilet paper hadn't stood up to the level of drainage, so I temporarily went home to change and clean up. A similar process occurred for the rest of the day; unfortunately, I couldn't go to the doctor, as I was only just changing my GP to one in the local area, rather than one that was two hours drive away... because I'd been so remarkably healthy in the couple of years past that I hadn't bothered. The pain and smell got so bad that when I showered that night, I suffered a dizzy spell and fell over, though fortunately I didn't hurt myself. On the Saturday, after cleaning up a LOT of drainage (by this time, I'd gone through 1 1/2 rolls of toilet paper in cleaning up the mess), I went to the local pharmacy and bought a whole host of supplies (bandages, medical tape, paracetamol, exfoliant and depilatory cream). The bandages and tape were an absolute lifesaver, meaning that I could go through a whole day without having to change my underwear (though I needed two 1cm thick bandages per day). The exfoliant and depilatory cream, by contrast, were a failure. The exfoliant went on OK, but when I tried to apply the depilatory cream, some of it ended up on the sensitive area around the pilonidal... and it left me screaming in agony for the next hour.

After a weekend of leaking and cleaning up the mess, I went back to work on the Monday morning. However, I was almost completely unable to sit down, and after a morning of agony, I went home at lunchtime before going to the doctors. The doctor (bless him) took one look and sent me off to the hospital (North Shore) with a note. Only to start what is possibly thre most surreal period of my life... I arrived at the hospital after a rather painful drive, and signed in OK. After a while, I had my blood pressure taken, and two doctors (with two student doctors) examined the area of the pilonidal, as well as demonstrating how to detect various medical problems in the abdomen by poking, prodding and pressing on various areas of my abdomen(!). They then hooked me up to an IV, but due to a shortage of stands, I had to share a stand with an Asian guy (whose name I unfortunately can't recall). By pure coincidence, he turned out to be in a remarkably similar situation to me - he was about the same age, lived in the same suburb, had an almost identical job, and had a problem with that particular part of his body (though not a pilonidal). For the next 8 hours, he and I shared the IV stand in the waiting room (due to a shortage of beds), accompanied by his heavily pregnant wife (due in August). Finally, at 1:30am, we were allocated beds, but because the wards were all full, we had to sleep in the corridor, though at least they put up screens around us(!). For twelve hours, I combined fitful sleeping with listening to the nurses and doctors walking past, occasional examinations (including changing my IV bag and blood pressure tests), and lots of reading (thankfully I had the foresight to bring along a nice large book to read).

Finally, the next afternoon, I was allocated a space in a ward (with three other people), where I spent the next ten hours doing largely the same as in the last twelve hours (reading, being examined and trying to get some sleep). I also had a shower, and ruined a bunch of nice hospital towels with the pilonidal leakage; the only things I'd had to eat and drink since arriving in the hospital a day and a half earlier were a sandwich, a cup of Milo, and a very small amount of water with the paracetamols I'd been taking. Finally, I was wheeled out in the middle of the night to the operating theatre, where I had to sign a release form(!) beforehand. Before I was knocked out, they got me to get onto the poerating table and lie on my side, and they were just laying out the instruments before lights out. I woke up a couple of hours later back in the ward, with the lump all gone and a much smaller level of pain than before. Sleep was still in short bursts rather than an all night thing, due to being unable to lie on my back, but at least I was able to eat the next morning (by which time I could have eaten anything).

Over the next day, I combined lots of reading, visits from the doctors and nurses, and getting to know my fellow patients (two had kidney problems, and the other left that afternoon, to be replaced by someone who'd had a stomach ulcer pop while working on a building site). Life was now much more tolerable, though I was taking cold showers rather than hot (to make sure I didn't hurt myself), and one of the kidney patients was going through such pain that he was often lying there moaning in agony. Due to a remarkable improvement in my condition the next morning (and because they desperately needed my bed), I had the IV removed and I was then discharged. Fortunately, I was capable of driving home, and then I started the recovery process, which I'm still going through. I'm using cushions underneath me when I sit down, and after I finished my programme of antibiotics, the pain and swelling have disappeared. The only inconvenience now is that I've had to have a district nurse come over each day to change my dressings (including the packing inside the slowly healing wound), but as of next week, I can go to a clinic to get it done. All going well, I'll be posting in the forums in a few weeks to announce my recovery (the only problem of having an excision with open healing is that it takes several weeks to heal).

Date: July 12, 2006

Story

Hi...I wanted to share my story because this seems to be something a lot of doctors don't know alot about...I went to numerous doctors and didn't always get the best information. Thoughout this journey I have learned a ton about this disease. I finally found a specialist at Georgetown University who was Phenomenal. I would recommend him to anyone. Let me start off with my story.... I am a 27 yrs old Female. 2 yrs ago (July 2004)I was going to my sister's wedding ( I was the maid of Honor) and driving in the car for 5 hours I noticed my tailbone hurt alot. I thought it would go away once I got out of the car but instead the pain got worse and worse. I got through all the wedding activities but shortly after I had my family take me to the emergency room. I seriously have never been in so much pain in my life. The ER doctor figured out I had a pilinoidal cyst and lanced, drained and packed it. I went back to the doctor (mind you I am currently out of town in Maryland...I live in North Carolina) after a few days he took the packing out and recommended a north carolina doctor to see. I think there are a lot of people out there who have small cysts that can manage the cyst without surgery....but I had a very large cyst and and was told I needed to have surgery. There was a very high chance I would have to go through the same painful ordeal again if I didn't have the cyst completely removed.

So I went to the NC doctor who was a general surgeon (if you have surgery for a pilinoidal cyst you do not want a general surgeon) He performed my first surgery (Oct 2004) and closed the wound up. I didn't get a lot of details as to what were good signs and what were bad signs...but about two months after the surgery the wound opened back up which obviously is not a good sign. The doctor told me that sometimes your body stops healing and it needs help so I started going to the doctor once a week and he would put something called silver nitrate on the wounds. This stuff stings alot and it would hurt for a couple hrs after. It essentially kills the top layer of skin so your body continues to heal itself. I did this for 6 months and it never completely healed. After a while I got tired of the pain and the doctor suggested a second surgery.

I had the second surgery August 2005 where the wound was left opened. Changing the gauze was very painful because the hole was very large and the gauze would stick to the wound. For the first month it went really well but then my body stopped healing again. My general surgeon finally told me he didn't know what to do and recomended me to a plastic surgeon in NC. (If you do surgery always use a plastic surgeon who is experienced with doing these types of surgeries don't bother with a general surgeon and i wouldn't bother with the silver nitrate either...) I interviewed the plastic surgeon but didn't get a good feeling he knew enough. I knew my cyst was a more complicated version and I needed an expert. I did research and found a Plastic surgeon in the Wound Care center at Georgetown university. I interviewed him and felt he knew 100 times more than the doctors I had seen previously. I told him what I had been through and found out that because my cyst was so large the general surgeon had taken out what he felt comfortable taking out but that he hadn't gotten the cyst completely out(after 2 surgeries). Having the bad cells inside me was what was causing my body to stop healing itself completely.

I had my third surgery with the new doctor in Nov 2005. This time he took out a lot more tissue... my surgery was two parts...first part he took out the tissue and left the wound open....they tested the specimen with a blue dye to make sure they had gotten all of the bad tissue out of me. It also allowed my body to drain the fluid which is good to help prevent infection. They just packed me with gauze that I changed once a day. I had to go back the second week once they were confident they got the cyst completely out and closed me up. They attached a tube to me with a bulb which allowed me to drain the blood. Closing the wound always leaves the possibility of opening back up if the cyst isn't completely taken out or if it drains too much. I had to change the bulb once a day until the doctor was confident enough that my drainage was under control and it wouldn't reopen my wound. (understand I had a huge wound causing for a lot of drainage) After a week they took the bulb out, a week later I got the stitches out. I did have a small hole open up due to stress from moving around...it isn't in a great area and is hard not to put stress on it even though i was trying to be super careful and i had to pack it until it closed up in March 2006. So far I have not had any problems and pain is completely gone and I hope that is the last I will have to deal with this. I think most people who have this...have a much smaller problem that is much more easily cared for. It is definitely scarely to go through this especially when there seems to be such little resources out there to get accurate information. Hopefully my story will help those people out there who have a more extreme version and are feeling lost. It can get fixed when you have the right doctor. I would not wish what I had to go through on anyone but am happy that it is finally over.

Date: July 11, 2006

Story

Hello, my name is Christine, and I reside literlay in the back yard of the Los Angeles International Airport ;). I've had this damn thing for a long time, like a year now. The first symptoms started a little over a year and a hlaf ago. I thaught I had bruised my tailbone really bad. But I ignored it. then, in August, on the last day of my brother's all star game, I was in so much pain that I could bareley enjoy his game. The next day I went to my mom's room, crying my eyes out. "F-it...take me to the ER NOW!".; I was examined by (of course, the hottest) doctor, and they lanced it. I was in pain, I was miserable, I was drugged on 800 mg Motrin, and I stared smoking ALOT (for the buzz to keep the pain at bay). I was on this same site about 7 months ago, and someone had wrote how they used a CASTER OIL...just put some on a gauze or cotten pad, plave it in the crack of your ass, with the castor oil directly covering the cyst. I tried it, and I kid you not, my cyst heal within three days. They come to a head about a day and a half, and they open on the 3rd or 4th. But I do take motrin for the pain. I kinda live with it now...when one comes up- the castor oil goes on. And they always break open by themselves. But, this disease sucks, you go through a week of being the grouchiest person in the world, and I'll turn to beer to make it better to. All my friends know about my problem, and my my calls me the ass(wo)man (I guess it's from some Sinefeild episode). I'm sure if I was in better shape I wouldnt have it as bad. But seriously, use the castor oil!!!!!!!!!! I dont beleive in medicine really, and this is an all natural cure. My uncle aslo suggested BLACK DRAWING SALVE...but I think it's exactley like the iodine stuff already recommended on this site. http://www.myspace.com/lovepunk85

Date: July 07, 2006

Story

My name is Jonathan, and I had my first Pilonidal cyst at age 15. I was a sophomore in high school, and the whole situation scared me. Though I managed to be lucky enough to be the son of a surgeon, I had no clue what was going on with me, and once I had my dad look at what I thought was tailbone pain, we were nearly immediately on the way to the hospital to remove the absess. The couple weeks afterwards during the healing process, I believed that I had never experienced such pain before. The first time I had my dressings changed, I could have screamed, but somehow I just let it all happen. Now, 3 and a half years later, I'm 18 and I've just finished my first year in college. Sometime during this spring, I noticed some odd drainage from the area where my cyst had been. I hadn't really experienced pain with it, but if ever I was active, any sweat/moisture would irritate the area. So once I was home on my summer vacation, I had it looked at by my father's partner at the clinic. Turns out I have an even bigger cyst now that sits below where it was the last time. It wasn't infected, and I decided with my parents that I would have it removed next summer. After all, carving out this new cyst would leave an even bigger hole than last time, causing me to basically be out of commission for 2 weeks, followed by a slow healing period of maybe 4-8 weeks. I don't really have that kind of time before school.

A couple days ago, I felt some pain in my tailbone, and had it checked out by my father's partner again, to find out I had an inflammation, an infection above where the cyst was, but it was caused by the cyst itself. After having it prodded and needled for a while, he came to the conclusion that there was no pus inside, which meant that the inflammation was just beginning. I'm now on anti-biotics and pain pills, with the hopes that they will get rid of this infection, and I can continue being in a mild state of comfort until the entire cyst can be taken care of. If the anti-biotics do not work however, it would seem that I'd have to go into the ER for a lancing and draining of the infection. Needless to say, this affliction has been one of the more difficult things in my life, being that it keeps me from work, from school, and from doing the things I love. The pain it's put me through, and the utter uncertainty of the problem make it even harder. Supposedly doctors don't even know why they happen, and there is no guaranteed way to get rid of them. They have a way of removing one's appendix, and they use it, because it works. But there is no such perfect operation for a pilonidal cyst, and it only fills me with doubt. As a person who has experienced a second cyst larger than the first, and even an infection that was completely unforeseen and incredibly unlikely, I continue to feel unsure and unsafe. I would like to just hope for the future, but even that is unclear at this time.

Date: July 07, 2006

Story

My first enlightenment to the existence of this ailment was about two days before my first child was born. I was in excruciating pain, couldn't sit, was as big as any 9-month pregnant woman......ugly picture. I had no idea this wasn't just a terrible boil or something. When I went into labor, all I kept telling everyone was, "don't touch my butt!" I delivered a delightful, healthy child and was supposed to be having nurses keeping compresses on this infection (still undeclared and unexplained to me). I got fed up with the lack of attention in the hospital and checked out the next day only to succumb totally to the pain and return to the hospital for emergency attention. I was in so much pain, it was a relief to have it lanced - immediate relief! I left the ER with instructions to keep it drained and covered (remember I had just given birth - no sitz baths for me!) and was advised to make an appointment with the surgeon to have it removed.

The infection healed and the pain went away for about 7 months. Then a long car ride brought that stabbing pain back to life and I made the appointment for the following week. What I was told would be just an overnight stay turned into 5 days in the hospital. Surgery was uneventful but I woke up to LOTS of bandaging and orders not to bend or sit. I spent weeks lying on my stomach (my elbows were sore!). After about 3 months I was finally able to sit straight on a padded surface. It was at least 6 months before I could sit on a hard surface. But that was the end of that.....until.....It's been 35 years and suddenly I'm being reminded of the tenderness. I'm reasonably sure it's because of a really old desk chair and I fully intend to remedy the cause. I'm praying it doesn't escalate into another event but is just a warning. 35 years is a pretty good relief span, don't you think?!

Date: July 07, 2006

Story

Good morning everyone - I'm a 22 year old who is having her first surgery in two and a half hours. About two months ago, I first noticed my cyst. I was at work and sat down in someone's car, and threw my head back in pain - what I knew as a simple little annoyance (which i was SURE was just a bruised tailbone... ha!) turned into the most terrible, sharp pain I've felt. My roommate made me go to the hospital, where this little ER doctor came in and poked at me and said "Pilonidal cyst. I'll be back in a minute to cut it open and then you'll be fine." Right. So, i sat there like "wtf?" And the nurse tried comforting me by telling me that people have these all the time.... that I'm going to scream while lancing it (which that was the only thing she was right about).... and that "after lancing it, [I'll] be fixed and I'll never have to worry about it again." So they packed it - telling me to come back the next day to have it removed and that should be it. I mean, can you believe this??? lol. so, whatever, I really thought they screwed something up BIGTIME when they told me that I'd have to come back AGAIN and have it repacked.

Anyway. After about a month and a half of repacking it, and being fed all KINDS of wrong information, and after it closed up - here I am now. My doctor (before) was telling me not to let that area get wet - when I shower, I was to cover it with plastic. They told me to change the dressing every 3 to 4 days - which it would fall out and I'd manage to do it myself, even though I was never shown HOW TO DO IT. And at the first sign of it returning, I went to my doctor and just said, "I want to be referred to a surgeon." I went to one, and they gave me the option of lancing it or just setting me up for surgery. So, that's where i'm at now. I'm just sitting here, waiting to go in. I just want this whole thing to be over with, and it's a bit defeating to hear peoples stories who have been dealing with this for upwards of ten years?! I didn't know this was a disease - I just figured it was a fluke and I got the short end of the stick. Anyway, thank you all for writing your stories. It's really helped open my eyes to different ways of healing. Take care.

Date: July 06, 2006

Story

my name is Rob, a 22year old male from new jersey im about 5'10" and around 220 pounds not the best shape of my life but u put the last 40 pounds on over the last 4 years at college ive noticed i had a small dimple at the top of my cleft for a while now but i never really paid it any mind because it didnt hurt or ooze recently the dimple has become a fair sized hole with another small dimple appearing 1/4 inch above it but about a week ago my entire lower back from the dimple up and into my right cheek became completely inflamed it never oozed on its own ever so i didnt know what was wrong i couldnt sit down or lay down without being in extreme pain finally i could not take it anymore and went into the shower and squatted down and just applied some pressure to my lower back and the blood and pus that came out almost made me want to cry i kept squeezing over and over for a few minutes until nothing came out but normal lookin blood.

 its been a week and i finally found time to go to my doctor and he says i need to get it removed i am so scared about this i dont want to go get lancing done because some people dont even heal from that and thats just to let it drain which i have already done on my own other people have had more then one surgery and still have not been cured and are now butchered from doctors that dont know how to correctly deal with this problem and on top of all my fear i do not have any medical insurance my mother does not make alot of money and cannot afford the insurance for even herself i have not seen or heard from my father in years i cant afford any insurance of my own right now because i just graduated college and i am still trying to find a job (i just took the police entrance exam but i wont know how i did till august and that still does not guarantee a job) medicaid in new jersey only seems to apply to children under 18 or the elderly/disabled i really do not know what to do im sitting here reading about this and the only thing i can afford to do is keep squeezing it myself every few days when the pressure builds up and keeping the area as clean as possible if anyone has any information on any type of charity medical coverage in new jersey that will help cover costs i would greatly appreciate links or phone numbers my email is bobthegoldfish14@yahoo.com i dont personally know anyone else with this problem and having it is making me feel really depressed i feel like its my fault for not taking enough care of myself or not sitting in the right position or not shaving that area or not going to a doctor sooner when i first noticed the small dimple or any other number of things i might have done to prevent it if prevention was even possible i honestly dont know how to handle the situation and surgery is scaring the hell out of me

Date: July 06, 2006

Story

Listen closely, and I will tell you a tale... So, I'm a 22 year old guy who has had problems with my pilonidal cyst since I was 16. I have had seven operations, ranging from relatively minor (<1 week recovery time) to fairly in-depth (no bending at the waist for 3 months). This thing got me deferred from my college of choice (the naval academy), prevented me from playing college football, kept me out of school for weeks at a time, and has obviously caused me a lot of pain and suffering. A lot of my friends are fascinated by my afliction, and as a result I have grown quite adept at telling stories of my various experiences in the operating room and otherwise. The first time I really began to be affected by cyst was in 11th grade, when I began to have a lot of pain during practice.

This all culminated during a tournament one weekend where I, decked out in my WHITE singlet, bled out and made a lot of jaws drop in the audience. My buddy's dad, a gynecologist, checked me out in the locker room and informed me that I had a pilonidal cyst. A month later I had my first surgery, and oh boy was it fun. It looked like the doc (a colorectal guy, the first of what would be four surgeons) did the surgery with a spade shovel, as I had a gigantic crater in my lower back. This would prove to be the most painful of all of the surgeries, as the hole was so deep. I remember trying to get off of the bed my parents set up in my living room (so I could watch tv all day) to get my meds, only to collapse in a screaming, crying heap on the ground.

Since then it hasnt been a matter of the cyst recurring, but rather a matter of the wound not healing. I'm a big, hairy guy (6'2", ~270) who is pretty active, so not only does my body fit the bill for recurring problems with the wound, but I also tend to push myself through recovery quickly because the next rugby/whatever season has arrived. I wont bore you all with the details of my other experiences (bleeding all over an exercise bike at the gym, multiple plastic surgeries with skin flaps, laser hair removal on the side, etc), but I will offer some advice: * let the damn thing heal before you start running around and being active. * go to a medical supply store and get a sitz-bath. Its a plastic tub you put in your toilet, and you can soak the area once a day. My most recent surgeon told me that this is what they used to have sufferers do whilst in the army, and I've had a lot of success with it in that the area has stayed clean and pain-free for a while. * you CAN shave your own ass if you just give it a chance. Beats having someone ELSE do it, yeah? * If you are having a period of bleeding/drainage, NOTHING works better than sticking a maxi-pad in your underwear. Its embarassing to carry around boxes of pink-wrappered maxis if youre a guy, but its better than having people go "uh... dude... your butt is bleeding."

Date: July 05, 2006

Story

Hello, I'm a 26-year-old woman from Texas (currently living in California), and I first found this website a long time ago and was comforted by the fact that many people know just what I'm going through. I had my first "experience" with the old pilonidal about 10 or 11 years ago, when I was in my teens. It always flared up after any bit of good old-fashioned high school partying - not enough sleep, drinking alcohol, anything that weakened my immune system the tiniest bit. After a few years of on-and-off extreme pain, making excuses to friends and boyfriends why I didn't feel good and why I couldn't sit in a car to drive to certain places, etc, and having my mother lance it whenever it flared up (and even my best friend on one embarrassing occasion), I swallowed my pride and love of privacywent to the doctor when I was 17. After a few none-too-fun butt-baring doctors' visits later, they said I would need to have it removed surgically, and I did, even though it doesn't guarantee complete removal ("If there's even the tiniest trace of it left, it could recur," they said).... It healed fine besides a scar that I hate, but apparently they didn't get it all out and I have had recurrences, though in a different place - a little, um, further down the butt area.

The flare-ups are much fewer and far between since the surgery, sometimes 2 years will pass without any sign of it whatsoever, and only in a few instances (years apart) has the pain been so bad that I've had to visit urgent care and have the doctor lance it for me. Nowadays if it ever flares up it's minor, with slight to moderate pain, and it usually goes away on its own after a few days. If not, then warm baths and maybe a little self-inflicted pressure does the trick. During one of the more serious flare-ups a few years ago, the doctor referred me to a surgeon, who said I needed to have another operation to remove the rest of it, but I never went back to schedule it. I feel like I keep it at bay as long as I take care of my body and keep my immune system in good shape, and when it does come around it's not so bad. All in all, my surgery was definitely worth it, though not 100% effective.

Date: July 05, 2006

Story

G'day, I'm a 21 year old from Melbourne, Australia, n will drop my story of pain and woe. First noticed a 'reddish lump' on my cleft about 8 months ago, of course did the working male thing and ignored it, thinking it was a pimple. Eventually started flaring up, on one occasion i attempted to bust it open and nearly passed out at the site of a litre of blood pourin 'out of my ass'. Fast forward 6 months, and I'm doing some reading the night before i go under the knife to cut the sucker out via karydakis method and end the madness. Only thing i can say is, im shooting myself for not addressing the issue earlier. Deal with it ASAP people, does no good to leave it. Much love to anyone dealing with the pest that is the Pilondal Sinus. We understand!

Date: July 04, 2006

Story

Hi All. My name is Jess and I'm 27 and live in California. I just had my first experience with a pilonidal cyst this past week. Last Monday I began feeling pain on my tail bone and thinking I pulled something I had my friend who works for a chiropractor look at it. Big mistake! She pushed on it causing me the most incredible pain I have ever felt. Then mistake two came as she told me to ice it over night. Next day I woke up and couldn't move without wanting to cry. After a few hours in the ER the doctor glanced at my huge bump and said I had a pilonidal cyst and would need to have it removed - gave me a prescription for anti-biotics and left. No explanation of what it was and no pain medication...despite the fact I was in tears.

My dad is a physician and was shocked by all of this so insisted on speaking to my surgeon the next day. My surgeon ended up saying surgery wasn't necessary...sprayed some cold numbing stuff and lanced me (what pain!). He said I'd be thanking him by the next day BUT the only thing I was thankful for was the pain medication he gave me as two days after the lancing I still couldn't move and was spiking a temp. I called him yesterday...he said to go to the ER...but I didn't want to go that route again. So...I used a heating pad for hours and took a few hot baths and it seems to have "popped" more itself...tons of bleeding and gunk BUT finally the pressure is off and I can move with little pain. My follow-up visit is Thursday. I'm really grateful that I found this site but must admit a lot of these testimonies scare me. It seems surgery just opens up a flood-gate of pain and complications. Has anyone else had an experience w/ lancing w/o packing? w/o curettage? I just want to be prepared before my Thursday appointment. My email is jlh215@gmail.com. My thoughts are with you all! ~jess

Date: July 03, 2006

Story

Hi all. God a lot of people suffer from abcess's. i got mine on the 14th november 2004. i didnt know what it was but my mum said you need to go to the hospital you cant sit down. so i went to the hospital and the surgeon said we are going to have to operate. anyways they did the operation i was still in a lot of pain but i knew that was to be expected. the following day the nurse told me to get in the bath and pull out the packing, i was crying pulling it out i was in that much agony. so then the nurse repacks it, i said to her how long will i have to have it packed for she said oh only about a week. turns out a year later im still having it packed, because on the 8th march 2005 i had to have the same op done again because it was just not healing. so more pain again, district nurse coming everyday. so in september of 2005 i went on holiday for two weeks and was panicking because i couldnt have it packed. i am so glad i found no one to pack it because in them two weeks with having no one messing with it, it healed up by its self. i went threw so much pain as most of you will no, you cant describe the pain its just awful. im all healed up now and have been for 10 months but for the past couple of days its been weeping so ive been putting creams and things on i just hope it'll be ok cos i cannot bare to go threw all that again! :(

Date: July 01, 2006

Story

Tokyo, Japan. I noticed a lump on my tailbone about ten years ago when I was at university at home in Australia and driving trucks part time on the weekends. My parents seemed to know what it was. My mother had an interesting historical perspective on the condition, telling me that the condition was common among vikings because of the amount of rowing they had to do. Someone from my father's work was having surgery for the same condition (no, my father's not a viking by trade), and my father told me a theory that the condition is thought to be related to the presence of a prehensile tail. At the time the lump was not too big, but used to get a bit sore after a day's driving. I presented my arse to my local GP but he didn't really have any idea what it might be and even pooh poohed my father's prehensile tail story a little. He said it was too small to deal with and sent me home. The years went by and the lump remained dormant. Because it hurt a little I couldn't help prodding it from time to time, and about four years ago I noticed that it would leak pus, though at the time I couldn't work out where it was coming from. It still wasn't too big or bothersome, and I didn't really want to take it to a GP again and be thought a hypercondriac.

I have been working in Japan since August last year and the problem has gotten a little worse. The lump started swelling up and when I prodded it enough it was leaking profusely. Then about a month ago I went to Korea on assignment and the bastard thing swelled up and wouldn't release. I took matters into my own hands, finding the mouth of the hole with the tooth of a comb that was at the hotel where I was staying. I was surprised when it worked. Plenty of pus came out, the swelling went down and the pain subsided. Anyway, I finally decided to have a doctor look at it again and went to the hospital yesterday. Thanks to this site and what I could find on google.co.jp I was able to explain what the problem was at checkin. I was sent to see a rectologist or something (肛門科 in Japanese). He looked at the sheet of notes I had scribed from the internet and told me that this was exactly the problem I had, but that I was talking to the wrong person. He sent me to plastic surgery. In the examination room I was asked to lay on my stomach and a very cute nurse held my butt cheeks apart while another male nurse took a photo of the condition with a digital camera. I wish I had thought to say cheese. The photo went straight in my file, so now when they search for my record there will be a picture of my hairy arse next to my name.

Next the surgeon came to have a peek. I must say that having people poke around your arsehole is not very dignifying. When the doctor found the mouth of the pilonidal he started working downwards and I almost had to grab his wrist from my prone position and get him going in the right direction. The surgeon poked something up the pilonidal mouth and said the cavity was fairly big. He explained that the best thing to do would be to cut the pilonidal out and then "take some of this" (he said grabbing my right butt cheek) and graft it onto the wound. Three hours surgery under general anaesthetic and two weeks rehab lying on my stomach in hospital. The surgeon explained that there was no urgency regarding the surgery. I have been releasing build up of pus with the back of a needle and he thought this was a fair enough way to manage he condition in the time being. I am off to the US for six months or so next month and will postpone the surgery until after I get back. For those stuck with the condition in Japan... Some Japanese terms: Pilonidal disease: 毛巣病 (もうそうびょう) mohsohbyoh Pilonidal cyst: 毛巣洞（もうそうどう、もうそとう) mohsohdoh, mohsohtoh/ 毛巣嚢（もうそのう）mohsohnoh pilonidal sinus: 毛巣瘻 (もうそうろう）mohsohroh Some useful Japanese sites: Wikipedia http://ja.wikipedia.org/wiki/%E6%AF%9B%E5%B7%A3%E6%B4%9E Do not look at the following site if you have a weak stomach. I shows a picture of a removed pilonidal. http://www.ft-path.com/tokuhtml/file/204.html