Personal Stories

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Date: July 03, 2009

Story

Hi, Im a 23 yr old woman and I had surgery in March 2009. I had originally thought I had hurt my tail bone as I had been doing a lot of rowing and biking at the gym. Went to the docs and he told me I had prob bruised it. At this point it looked like a bruise but felt like a graze at the top of my crack. So he gave me really strong painkillers and sent me on my way. I took them and the didnt even touch the pain, it was now 5 days since the pain began to intesify so much that I couldn't sit properlly (it began on a fri/sat). By the thursday (saw the doc on the monday) I couldnt move and was cryin hysterically with the pain. I have never experienced anyting like that in my life. I havent had any children or broken any bones etc so hadn't experienced that much pain before. My mum got so worried she phoned the doctor and asked for one to come out and see me, none were available to I had to speak to a nurse and describe the pain I was in and what the wound looked like. She asked if I had had any fluid come from it, which I hadnt, and she asked if it had a white line going through the middle of it, which it did. She told me to get to the walk in centre at the hospital asap, who then sent me to A+E and told me I had a pilonidal sinus. <paragraph break> I then had to walk what felt like miles to ward 3 of the hospital, up and down there stupid corridors at a pace where an old person with a stick could have over taken me at least twice. I managed to get to the ward, screaming and nearly collapsing in agony. I couldnt handle the pain any longer. Eventually they got me on a bed and gave me two injections in my butt, one of which was morphine. Gotta love the stuff, the pain went imediatly, and I managed to fall asleep. I was prept and had my operation at 2pm on the friday. Went home at 3pmish on the saturday. Had to get myself into see the nurse at the surgery on the monday, my mum took me luckily, but the journey was pure hell. It doesnt hurt like it does before you have the op, its just a diff pain when you get dressing changed, have to walk or travel. Managed to get the nurses to come to me for a week then 7 weeks from then I had to go and see a nurse every day to get dressing changed. That was pure hell. Couldnt drive so was relyin on friends and family to drive me. <paragraph break>I was off work for 6-7 weeks, had to see the nurse and get dressing changed daily for another 6-7 weeks after that. Thats 12-14 weeks of my life of living hell. At 15 weeks it finally closed over. It was 3 inches long by 2.5 wide by 3 inches deep, pretty huge. Its healed over ok and I check it daily and shower as much as I can. But still very uncomfy sittin esp as I have an office job. I have to carry 2 cushions around with me for when I have to sit at work or in the car or at home, its crap. I am currently booked into see the nurse tomorrow as its been hurting a lot this week, I think I have just sat on it too much, dont get up as often as I should at work, too much to do and I forget til I get a shooting pain go through me. Fingers xed it isnt serious news tomorrow. I feel for all of you suffers I really do. Sam

Date: June 30, 2009

Story

Hi, Wow all these stories have gotten to me. I first noticed something was wrong in November of 2006. There was blood coming out of the area and I saw 3 holes. I was 18 at the time. I went to my GP she referred me to the surgeon who told me it was no big deal. June of 2007 I started to get severe pain, I thought I was going to die I couldn't stop crying and screaming the pain was just too much to handle. I went back to the surgeon and she didnt give me an appointment for a surgery till the end of August which I thought was ok because the pain had gone away but sure enough it came back and it was really swellon this time so I went to the ER hoping they would do something but while I was in the waiting room it poped on it's own. So I ended up having the surgery in August of 2007. I had home care come to my house everyday to change the dressing, they were coming to my house everyday for 6 months! During the course of this time they tried the regular packing, acticote absorbent and finally the vac in the final 2 weeks which I think did the trick. After it closed up the skin cracked 2 days later and started to bleed. It never really healed because the discharge never stopped. When I went back to my surgeon she didnt even look at it and said we could do another surgery. I didn't like her attitude she was very cold so I let it be. In November of 2008 I had another attack, this time I went to another surgeon who explained everything to me and I felt much comfortable with her. In December of 2008 I had my second surgery and I have not yet healed and to make matters worse another PC has formed below the original wound and there is a tunnel going from the first one to the second one. I went back to my surgeon and she suggested I do another surgery and this time she will keep me in the hospital one night and put me on the vac because after the last surgery home care did not respond to her request of putting me on the vac. I am very nurvous and scared, I have been through this before but I want it to end. It is very depressing, I have already put my life on hold and do not want to do that anymore I was supposed to go back to University in September and hope that I still can. Thanks to everyone for putting their stories up as it has helped me see that I am not alone.

Date: June 29, 2009

Story

My name is Ashley and I'm a 30 year old female. I am currently in the midst of a pilonidal cyst flare up. I have never had surgery, but have dealt with the symptoms and flare ups for about seven years now. I actually did not know what this was until about two years ago, figuring it was just an ingrown hair that got infected. <pb> I was 23 when I experienced my first flare up. Like most people with this problem, I was really embarrassed by it's location and figured it was something I could take care of by myself. Every day I doused it with peroxide, alcohol and antibiotic creams. It just kept getting bigger and more painful. A week into it, the thing had gotten so big and excruciating that I had to leave work because I could barely walk (or stand, sit, etc). I was starting to think that I was either going to die or have to go to the ER (I had no health insurance at the time). However, to my glee...the following morning I discovered that it finally had formed a head. I have never in my life experienced anything quite so foul. Brown pus poured out of me and it took an entire package of cotton circles before the drainage slowed. It smelled so awful. <pb> After I drained it, I soaked in a bath and proceeded to clean it out. It was like instant relief. It healed up and like most people with this problem, I thought it was gone for good. Ha! Fast forward to two years later. I start feeling that itch and a dull ache...ugh. I figure once again, another ingrown hair. It grows, but not nearly as much as the previous time and manages to burst much sooner (though not nearly as foul). I didn't have health insurance at this time either, so I let it heal up and forgot about it. <pb> Fast forward another two years, I am now married and have a one year old. My son and I have just gotten over a very mean MRSA infection and suddenly the itch has returned...followed shortly by the bump. I have gone through child birth and have lost much of my shyness as a result, so I decide I've got to go to my doctor (also partly in fear that it is infected with the MRSA). For those of you that don't know what MRSA is, it's the extremely dangerous antibiotic resistant staph infection. <pb> My doctor looks at it and basically tells me it's probably a pilonidal cyst, but since it's so close to my recent MRSA infection, we better go with the broad spectrum antibiotics just in case. She also told me that I would likely need to have surgery to cure it. I ignore this and take the antibiotics, which heal it up in no time. <pb> Later, I have another flare up and tell the doctor that I just want to do the antibiotics because surgery sounds awful. It heals up and all is good. <pb> That brings me to present time. I am now in the midst of my second worst flare-up. It's not quite as bad as that first one, but it's borderline. This time, the antibiotics did not work and it just kept growing. I'm scheduled to see my doctor tomorrow and they have set my appointment up with enough time to do a lancing if necessary (I'm thinking it's necessary). I'm so sick of the pain and want this thing gone. I'm worried that I'm going to lose my job due to excessive absences (I have other health problems plus I have to stay home with my son when he's ill). Plus, I don't know anything about the surgeons in my area (I live in Memphis TN and there are no referrals in the forums for that area). I don't want to have surgery and deal with recurring problems. I also feel overwhelmed with decisions to make after reading this site. If anyone has any advice, it would be much appreciated. I would love to go the less invasive line and have the pits removed...but how do I make that happen? Feel free to email me at Lunasea1039@yahoo.com.

Date: June 29, 2009

Story

Date: June 27, 2009

Story

To whom it may concern:

I am a 22 year old male out of Dallas, TX who has had difficulty from this for awhile, but I'll just start from the beginning and work my way to the present.

When I was 19 I was having a prostate exam at the doctor's office, just a routine visit. He noticed that I had three little "dimples" in the mid-section of my butt. He informed that I had what were called "pilonidal cysts" and that corrective surgery had to take place in order to remove them - roots and all. Unfortunately, though at the time I had no way of knowing this, the doctor was confident in doing a surgery that he was not exactly qualified to do. He removed a good deal of tissue, basically the entire crack about an inch deep, stuffed it with gauze and instructed me to soak it three times a day and change the dressing once a day.

After a year, the wound had not healed up and I had developed a pretty severe infection. I was now 20 years old. The doctor referred me to a local surgeon who put me to sleep and removed more necrotic tissue. After a time the wound had become relatively small and I made an attempt to join the Armed Forces. At MEPS (Military Entrance Processing Station) they found active bleeding back there and gave me a temporary disqualify; told me to fix it and come back.

This time it gets infected again, plus I experience a reoccurance of a cyst. The doctor who did the first surgery goes back in to take out EVEN MORE tissue. This time I have a gigantic hole in my back side. The next day, I sit in the bathtub to remove the gauze and for some reason my butt won't stop pouring blood. I keep trying to put pressure on it with towels and re-dressing it; but it won't stop bleeding in a pulsing manner. I call 911 and tell them that I'm starting to get dizzy and see spots because I'm losing a lot of blood out of you-know-where. The EMT's pick me up and take me to medical city in Dallas. They rushed me into a room while I was bleeding back into the IV they had put in to rehydrate me. I was pumped full of delodid (spl?) so they could go in and stitch up the Fenal Artery which had been ripped when I pulled out my dressing that morning. A wound specialist came into the room and began putting a Wound VAC on me. I wore the wound VAC for quite some time, maybe about five months. The company thought the wound was doing well enough that they could take the VAC off, and the wound still didn't heal.

I moved to Georgia due to some personal issues in my life. Now at the age of 21. I go and see a colon/rectal specialist in Savannah, and he tells me they're going to have to do a wound debridment plus a rotational flap. They do the first rotational flap in february of 2009. The flap fails and opens up. The same plastic surgeon does a SECOND rotational flap later that month plus a Z-Plasty across the right cheek. I spent a month in the hospital laying on my stomach while I turned 22. After I was released from the hospital, the wound dehists again; but this time it was only in the middle part, not on the cheek. I go to another hospital in Statesboro where they put me in a Dive Chamber - which a pressure chamber that pumps you with about 800 times the normal oxygen level to make your body heal A LOT faster. My wound finally healed, but after about a week of walking it opened just a little bit at the bottom. As of today, the wound is about the size of my pinky fingernail, and only about half a mm deep.

I will continue to update my story as it goes. But I can tell you as a guy who has had 5 surgeries on his butt in the past 2 1/2 years, things will always start getting better. My suggestion is to try the oxygen chamber. When nothing else was working to heal my body - that did. Thank you for reading. -Brad

ete.brad at gmail.com

Date: June 22, 2009

Story

Hello, I am a 42 year old male living in Manitoba,Canada that had pilonidal surgery on June 17, 2009. This is day 5 of my open wound recovery and I feel pretty good aside from not being able to sit. My wound is 4cm long x 2cm wide x 2cm deep and completely out of the midline (CRACK). I am very worried about the recurrence rate after reading some of your stories. I am hoping that since mine developed late in life that it won't return!!!! I had a bad hockey fall on my tailbone when I was 12 years old that periodically gave me a weird sensation in the tailbone area for as long as I can remember. I had to sit on a doughnut tube for a week if I remember correctly. Hopefully this is the cause and not an ingrown hair or something. This web site has been very helpful through out this nasty process. Good luck to everyone! Feel free to respond.

Cheers, Laurie

Date: June 20, 2009

Story

Well hello good people.. I am a 19 year old female who recenty experienced her first P.C. Man o man I have never been through so much pain in my life.. As many of u mainly women I waz so scared.. N embarrassed, extremely.. I spend about 5 dayz with it.. My dayz I spent mainly standin and nitez I spend layin belly down cryin in my pillow.. On the 5th nite I decideed 2 look it up.. So I googled "pain in upper butt crack". Man waz I amazed at all the stores and all the info I found.. 4 a while I thought I waz the only person.. The more I learned and the more storyz I read the more embarrassed I became.. Hairy butt.. Lol my butt not hairy..

Well the pain waz so bad I thought only 2 thingz can happen I'm either goin 2 die from the pain or tell my mom.. 4 a second I thought death waz on itz way.. Mom waz sleep.. So I went into my 21 year old bro room teary eyed and told him.. He laughted and told me 2 get out and 2 go shave my butt.. Lol brotherz.. I try 2 make him look but he said "hell no I'm not lookin at ur butt" u got 2 love him rite.. The next day I told my Lil sis 2 take a pic and I sent it 2 my mom.. She workz on the phone so she didn't response rite away.. But when she did man she waz scared.. No lie it lookz like u have a second private area, Lil sis still callz it my second va ja ja lol

anyway I researched everything so I knew wat it waz wed went 2 my fam dr (Thursday morinin it poped, grandma told me 2 put Vicks on it so it could pop, and it did.. Very stinky but made it feel way better)Fri saw a surgeon.. Monday had surgery.. Scariest day of my life.. Itz been a whole week.. And itz been pretty good.. I had a open one.. And my mom cleanz it.. And man does it hurt some timez... Itz stickz 2 the gauze and my mom tryz her best 2 not let it hurt but boy does it...

I just wanted 2 tell my story and thank all u great people 4 helpin me out especially the women.. Itz great 2 know I'm not the only one..with diz hairy butt disease, even if our buttz have no hair.. I lasted about a week with it and I thought I waz goin 2 die.. Don't know how u all lasted yearz.. Yearz with it.. I prey mine never comez back.. I have faith in my dr and my mom 2 help it not happen.. This website really helped.. Us people with second or 4 guyz first vagina in r butt crackz have 2 stick 2gether lol.. Sorry itz the truth and we all know it..

Well thankz I look forward 2 hearin new stories.. And informin everyone on how my progress goes.. I've even got my mom lookin at the site.. Well She iz my nurse now so she haz 2 be informed.. Again thank u!! J.A

Date: June 20, 2009

Story

I discovered I had a pilonidal sinus when I was about 20. It was excruciating but despite the repeated trips to the doctors for antibiotics I refused to consider surgery - particularly when the doctor said the operation was 'quite unpleasant'. However, when it all got too much, I saw a different doctor who put a new light on things and I finally agreed to get it seen to. The best thing I ever did. 26 yrs on, I haven't had a day's trouble since. My only regret is that I spent so long avoiding it and enduring needless pain.

Date: June 18, 2009

Story

Hello all, Here is my story: I am a 26 year old male currently. When I was 18 and just graduated from High School, one day I felt some tenderness on my backside. I went into the bathroom to check it out and noticed I had a bump at the tip of my crack, lower back area. I was very scared and had always been terrified of doctors and surgery. I went a year and half I believe of living with this thing on my backside. I finally got sick of it being painful one day and told my mom about it. She then made me an appointment with a dermatologist. The dermatologist misdiagnosed me with pyrogenic granuloma. He then "burned the tip of the cyst off at the surface and dug into it a little ways to burn that too. He said he didn't feel comfortable going any deeper so he stopped the procedure. I then went home and was treated with some cream stuff for the small hole and even though there was still half of a little knot or ball inside me, I was painless, no draining anymore and was very happy. I didn't have insurance at the time and the dermitologist wanted me to see a surgeon to remove the rest. would have been expensive so I opted not to do it.

I lived with it with no problems until about 4 weeks ago. The cyst had grown back and flared up and made an outer "ball" looking thing again. It was painful to sit and I thought it was finally time to get this thing taken care of. I scheduled an appointment with a surgeon and he confirmed it was a pilonidal cyst. I was scared because I had read some horror stories about it and seen gruesome pictures on the net of open wound surgeries. I knew it was time to face it though so today, 6-18-09, i had my surgery. My cyst had gone back down and was smooth again on the skin so there was no infection. The doctor cut it out ( about a 4 inch incision) and "superglued" everything back (newer procedure) the surgery took 20 minutes and i am at home chilling out feeling amazing. I encourage anyone with this awful ailment to get the surgery and not just lancing or anything that will probably not completely take it away. The doc said there was a minor 2% chance of it returning but the surgery usually will take care of it for good. these things can form (and did in my case) by ingrown hair. the doc wants me to have laser hair removal back there and that is a no brainer to prevent this thing from ever happening again. I know many have had worse experiences but I am very blessed that everything has turned out great and hope this encourages those who are contemplating the surgery...piece o cake, go for it and feel great afterwards! Sincerely, KK

Date: June 17, 2009

Story

Hello all. My first experience with all of this was when I was 15 years old. Not having a driver's license, I'd ride my 10-speed to get around. Once day, I came home and felt "wet." I thought that maybe my period had started early, but when I went to the bathroom to investigate, that was not what I found. I yelled for my mother, who instantly knew what it was. She took me to my family doctor, who gave me a couple of locals and them proceded to drain it. He squeezed it, I think, and then gave me a stich. With a prescription for antibiotics and cream, I was sent home and told to schedule an appointment with the surgeon.

My mother did just that, but the surgeon declared that a pilonidal cyst was not the problem and sent us on our way.

When I was about 19 years old, living on my own and having no insurance, it flared up again. I called the same family doctor, who ordered me a dose of anitibotics and we were able to nip it in the bud before it flared up too much.

At about 21 it flared up again. Again, I had no insurance, but was unable to get in touch with the doctor fast enough and had to drain it myself, with the help of my older sister. I sat in a hot tubs and squeezed and squeezed. It healed and all was well.

At about 22, guess what was back? Again, it flared up, and still no insurance. Even though I couldn't really sit down or put on my own shoes, I still drove for 3 hours to stand at a Pearl Jam concert, hoping it didn't choose that moment to break. A couple of days later, it broke. This time I was completely on my own, sitting in the hot bath water and pushing and pushing to drain it.

After that occassion, my cyst did not really flare it's ugly head for 14 years! Mind you, it hurt to sit "square" for long periods of time, and it would get tender and sore periodically, but never did it get so bad that it needed to be drained.

Now, at 38, I had another flare up. I was able to see my new family doctor and get a round of antibiotics and keep it at bay. I was sent to see a surgeon who said I should have the surgery; I had a 70% change of another flare up, but, then again, maybe I'd go another 14 years without one.

Six months later, I was back on the phone to the family doctor begging for anitbiotics. He wouldn't give them to me. Call the surgeon. From the morning to the afternoon it swelled up and out signficantly. When I finally got the surgeon's office, it was obviously going to need to get drained. The nurse told me the doctor couldn't see me for two weeks! I just started laughing! My family doctor wouldn't see and now the surgeon wouldn't see me. I asked the nurse if I should just go to the ER or plan on spending the next week in the tub? She took pity on me and squeezed me in for a lancing the next afternoon.

Remembering what my doctor had done 24 years earlier, I figured I'd go to the doctor, have it drained and go to work. I couldn't have been more wrong! This time, the local didn't particularly work and the pain was horrible. I was screaming and begging for the doctor to stop. When he did, he was happy to report that he'd got out 20 cc's of goo. I was in shock; I hadn't expected that much pain! I walked out of there, not really understanding anything they told me, sat in my car and cried for 20 minutes, and then drove home for an hour in WLA traffic.

When I got home, I went to take a shower. I wanted to put a fresh bandage on it. I'd turned down home health care, thinking it would simply be just putting a new bandage over it twice a day. When I took off the bandage, my husband declared there was something sticking out and should he pull it out? I said absolutely not. I took a shower and spent the night in horrible pain.

The next morning, I called the surgeon, crying. He told me to come into the office, the nurse would give me a prescription for Vicodin and show my husband how to change the packing. I had to have that first packing done with only extra strength tylenol. My screaming and crying nearly made my husband pass out, and it became clear in that moment that there was no way he could take care of it. It took three days to get the home health people set up, and in that time I was driving back and forth, nearly an hour each way, to have the nurse change the packing. Fortunately, after day number two, the pain from having the packing changed wasn't nearly so bad. A week after lancing, there was no more ooze and I was told that I didn't need to keep packing it. Give it two more weeks and then call to schedule surgery. He would preform a closed surgery, and only if it got infected, would I have to worry about dealing with it being open.

As this doctor's after care wasn't all that (being sent home without any pain killers or making sure that I completely understood what was required to pack it) I'm hesitant to have him do the surgery. This week I met with another surgeon, closer to the house and a colon/rectal specialisty. She WILL NOT do the stiches; will only leave it open.

So, I set at my desk, freaking myself out looking at pictures of people's surgery, reading about failed ones, successful ones and the like. I have to work: I do not get paid for sick time or vacation time. If I do not work, I do not get paid. I also have a small child to take care of, so the idea of being laid our for a month doesn't seem like a real possibility. Additionally, my husband cannot change the packing and there is nobody to help me. My mother has passed on, my one sister lives in another state and my other sister is currently going through having a double masectomy.

All that being said, the risk of infection, or it not healing right or getting another one makes me consider that maybe I should leave it open. It is not the surgery, it is the aftercare. Should I make a choice based on long term results or what my immediate needs are?

Or (and I cannot help but be inclined to lean towards this one) leave it be and maybe hope for another 14 years of good forturn?

Date: June 11, 2009

Story

A message of hope from a 6ft tall 34 year old woman (with a non-hairy bum!) who had surgery with no complications, other than a horrified boyfriend: I had a pilondal cyst that I clearly remember feeling pain from by the time I was in 6th grade. I remember specifically because it became painful, then impossible, to sit cross-legged ("indian style"), which was (and still is; sorry knees) my preferred way of sitting. My parents told me I was imagining things and/or that I just bruised my tailbone because I was going through rapid growth spurts and was a klutz and sometimes fell flat on my butt. By high school I noticed a rather large red painful bump at the top of my bum crack, researched and figured out it was a p.c., but I was too embarassed to say anything and be a "monkey girl," so I suffered through it, with no intention of dealing with it. In comparison to some other stories on here, it wasn't so bad.

Then, at 18, on one of the first nights I spent with my first "real" boyfriend, I awoke (naked) in the middle of the night to find both him and me covered with blood and smelly pus; the cyst had fully drained itself while I slept and as I'd tossed and turned it had gotten all over the sheets and on him too! I thought I was going to die of embarrassment. This had never happened before. I'd had some minor leaking in the past, but I'd learned that eating fiber and taking sitz baths and not sitting certain ways helped reduce inflammation, so I had only had a few minor flare-ups....however I had not taken the new occurance in my life- physical intimacy-into account; I suspect our inexperienced teenage aerobics triggered this cyst explosion...SO incredibly embarassing AND I was still on my parent's health insurance, so I had to explain to them too. Ugh.

Long story short, they didn't do much for me at the ER, but I ended up having the whole thing removed a few months later; day surgery, it was a breeze. It was pretty deep, but my boyfriend was a saint and helped me pack/unpack it with gauze...this was back in 1995. Keeping it clean was the most important part. It took about eight months to fully close, and now my entire family giggles anytime someone utters the phrase "half-assed" because my butt is literally stiched half shut. I've decided to embrace it and since you can see the top of the scar out of the top of my jeans (a monkey stamp, not a tramp stamp, thank you) I've learned not to be shy about it....and have been amazed at how many people I've met at parties. etc over the years that had the same problem!I do still have trouble sitting cross legged for any real length of time and sitting in a hard chair is still hard; there's no padding on my butt(!) but I have never had any further issues with it in almost 15 years. I'm cured, I think! :-)

Good luck to all, there is hope--and I hope you have a supportive parent or partner, because unless you have a head that rotates completely, it can be hard to take care of yourself at first! *hug*

Date: June 11, 2009

Story

Hi, I'm an adult man, and just turned 30 last week. My experience with Pilonidal Disease started 3 years ago in July, 2006.

My life in 2006 involved a lot of sitting. See, I worked full time in an office, attended 4 night classes and 2 more on Saturdays to finish my degree (with lots of study and project work time as well, obviously), and held a senior role on an advisory board that met about 30 hours a month whenever most everyone's schedules could align. Plus, to relax I played online video games with friends for, I'd say, and additional 10 hours of sitting per week. In other words, I was sitting for approximately 85 hours per week.

In April of 2006 a lot of this changed. I was graduating from university and only had one class left. So my work week dropped to approximately 55 hours per week! But my gaming time made up some of the slack, so I still sat for about 70 hours per week.

Now, I wasn't in great shape back then, but my then fiancé (now wife, thank God! I'll explain below) and I went for long trail walks in the river valley, and walked everywhere else because we didn't have a car yet, living in the downtown core. I was athletic for most of my life but, ironically it seems, in several sports involving sitting, such as rowing and mountain biking. And I was able to jog every once in a while when the urge struck me. So I wasn't too overweight.

With that background I hope you can put yourselves in my shoes a little better. With 6 final exams done in April, my wife and I left for our first vacation together the night of my last exam. It was great! All except I kept getting VERY itchy in my butt crack, especially while driving it seemed. It was so frequent that I was getting frustrated and itching rather roughly in an attempt to make it go away.

A few weeks later, back home, we were sleeping in our tiny, but hot apartment (it was a record heat wave in our city that Summer) when I woke and itched my butt crack again, but this time I felt something. Something like a small scab, or divot. I woke my wife up to get her to check and she said it was a small hole.

I've only heard of these kinds of things happening in several parasitic cases, so I pretty much freaked out. We check, double check, triple checked, tried to sleep, toss and turned... it was torture waiting to go in the morning to the Dr.'s office. When I went, the Dr., who now I believe was in the midst of their residency and therefore inexperienced with this concern, said she has never seen this, have I noticed any bugs or parasites (to which I almost passed out upon hearing) and then assigned me to see a general family doctor. I went to him right away, and he set me in the right ballpark in terms of what I'm experiencing - a "Pilonidal Cyst". He sent me to a general surgeon, who looked at it and suggested surgery. I was too naïve, not to mention afraid, to press him too much for answers and options, so all I asked was, "If I don't get surgery yet, can it become cancerous?" He said yes. Surgery was scheduled for a couple of weeks later.

When I woke up in the recovery room, even on the heavy anesthetics the surgery used, I was in pain. We went home after a couple of hours and met with our first home care nurse, who trained my wife in how to care for the wound. That's when I found out the wound was 5cm long, 2cm wide, and 3cm deep. We were to change the packing daily, have baths/showers, and go back to work after 6 weeks.

My wife bravely took up the responsibility. I feel genuine sorrow for this, because she's had a rather sheltered and safe life with no serious accidents or experiences, whereas I came from a military and close protection background before meeting her and going to university. I was a little more accustomed to field first aid and combat wounds that sometimes resemble what we were dealing with. Anyways, she bravely learned how to do all of the necessary things, cleaning the wound, checking depth and for infection, redressing, and caring for the instruments and supplies. Now, I consider myself a fool for how I behaved back then. Within a couple of weeks I had read a few books for fun and grown bored so I went back to playing on the computer. STUPID decision. And After 6 weeks I was back at work - maybe a little too soon. AND, I embarrassingly never thought to look online for information on this disease. I wish I did.

Over the course of the next 16 months, I endured infection after infection, tear after tear, and "pocket" after pocket in the wound. The surgeon suggested a second surgery, which happened in October, 2007, three weeks after my wife and I got married. This time the wound wasn't as big as the first, but it was still massive. And it was lower in the cleft. A week after the surgery I was fitted with a wound vac.

Now I have some points to say about the wound vac. Your local health care organization will argue that they are in short supply and that other more serious patients might need them. If you're on the waiting list enough time in advance, it should be a problem. You will benefit from it! BUT, and it's a big but (no pun intended), it hurts. See, they stuff a sponge into the wound, cover it with airtight tape, and plug a weak little vacuum into it. It sucks away at the wound, pulling all the stuff out and helping it heal (much more efficiently!). But taking the sponge out was murder for me. Apparently the new growth can start to absorb the sponge a bit, making the removal of the sponge quite literally a tug-of-war. The first time this was done on me, it took 90 minutes to get it out. It hurt, a lot. But in about 2 months I had healed almost to the surface, as opposed to 6 months. It was worth it!

With the wound vac off and the wound nearly healed, I returned to work (I took 2.5 months off this time). It wasn't long before another pocket built up and burst. I blamed it on sitting and bad posture (but still didn't think to look for this site, frustratingly). Months went by with hopes growing and crashing with every tear and flame up/drainage.

The surgeon suggested local freezing to cut it open and drain it again. We were pretty frustrate at this time that it had been over two years and all progress seems to be sliding backwards, again. We ended up leaving him for another surgeon, who set us up with a wound care clinic right away, in August, 2008.

This wound clinic was a mixed blessing. Firstly, we found out that a lot of the tips we were given we bad. For instance, and open wound (no matter what kind) should never be exposed to tap water (via bath or shower), and that us showering the wound regularly probably accounted for several of the infections. Second, I was using a donut pillow. They gave me a foam seat that's especially made for lower back physio recovery. And a host of other corrections. Following their advice, the wound healed remarkably fast! In two weeks it made up 90% of it's growth. It was pretty much done! And my wife learned new techniques for wound care (I already love her, but I swear she's a saint) such as massaging the scar tissue and area.

By November, I was out of bandages - the first time in 28 months! I still had a small tear every once in a blue moon, but it wasn't too bad. Then two days before Christmas a large pocket suddenly burst. I was feeling some discomfort leading up to it, and I was sitting at a desk a couple of time that week, but for it's size and lack of serious pain, we were surprised. We went right back to doing what we were doing with the wound clinic. It healed again.

Since January of this year I've had two micro-sinuses (very small sinuses, the diameter of a pin or needle) and minimal drainage, and one tear. Again, no pain and minimal discomfort. I was out of the bandages for a couple of months by the time the second micro-sinus occurred. But things healed. In fact, a couple of weeks ago I felt GREAT! I mean, I was able to walk comfortably again! I felt less restricted in general movement than I have for the last 3.5 years! I still wasn't sitting at all, except for driving - which I did do for a couple of hours at a time sometimes back in May.

Then last week, a day after my birthday, I was really sore. I figured I seriously bruised the scar tissue from sitting while driving and at the restaurant we went to for my birthday. But the pain grew, to the point that barely touching it hurt. After three years (which will be in the first week of this July), I can't recall when a pocket ever hurt this bad. It wasn't as bad as I've read. I could still walk, for example. And my wife caught me sleeping on my back a few times too. So it wasn't unbearable pain, but it was worse for a "healed" wound than I've experienced. Sure enough, Tuesday around 1:30AM it burst. We cleaned it up and found a small sinus. It's been draining since then, and the pain has been decreasing as well, but it is concentrated in one spot.

THAT is what finally clued me in to look online and find this site. And I have to say, I am SO THANKFUL, sincerely, for this site! I've learned that we have tricks to handle this! We have options! We're armed with knowledge and informed questions & practices! My wife and I are so grateful! It brings us hope that this is at least manageable, and at best BEATABLE! And we thank you for that positivity that until now was drowned in a lonely, frustrating and scary world!

The next steps for us are: we're back to daily dressing changes; we're leery about showering with a sinus so we use a waterproof bandage; I'm calling the wound clinic in the morning to set up an appointment (there weren't open since this started on Tuesday - funding problems); as I type this I have a heating pad on the area to help move it along and drain it more efficiently (as I'm convinced, thanks to the info on this site, that it's infected); and many other little things. We honestly feel like we have a good fighting chance now that we've found so much information and a great community for this disease! It's time to take control back! :)

Date: June 10, 2009

Story

Hello everyone.

My name is Tea, and I had pilonidal surgery about three years ago. My story is slightly different from most of the stories that I read, so here goes. I have been battling hidradenitis since I was about 12, I'm 32 now. I suffer from the disease in my inner thigh area and, most recently, in my underarms.

About 10 years ago, I developed a pilonidal abscess in my tailbone when I started working in an office setting, mostly sitting during my workshift. After developing a 104-degree temperature and an indescribable pain in my tailbone, EMTs scraped me off my living room floor and rushed me to the emergency room via ambulance.

After anesthetizing the area, which was more painful than exfoliating my skin with a sea salt and isopropyl alcohol scrub, the surgeon drained the area and packed it with gauze, to be removed a week later by another physician, who specialized in cysts, boils, and the like.

The surgery left a teeny scar that could only be viewed if someone of the opposite sex was "up close and personal." No biggie, until five years later when I kept developing another abscess just a half an inch higher than my teeny scar. I was referred to a specialist, who scheduled surgery for me.

I thought the surgery would be similar to the one I had five years earlier. To my chagrin, I woke up in the hospital with a Jackson-Pratt bulb hanging from just above where my butt crack used to be. When I looked in the mirror, the surgeon sutchered at least four inches of the beginning of my butt crack together.

I asked questions prior to the surgery and had been through a pilonidal excision before, and I couldn't understand why I didn't have my crack, butt-crack that is. My surgeon later told me that he cut out all the feet or distributaries the original cyst caused to ensure, or at least try to ensure, it didn't return. The doctor explained there was no way to tell how much he would have to cut away until he actually opened up the area, and he said if hadn't, the cyst would have surely returned. Another doctor, unaffiliated with my surgeon, commented on how he'd never seen such a careful and well-executed post-surgical sutchering (on one of my post-surgery-please-help-me-because-this-sitz-bath-ain't-working visits).

Three years later and I'm still tailbone-abscess free, but I am so very insecure about having a keister that looks like its crack's been made with some type of clay. I AM IN NO WAY INSINUATING THAT I AM NOT GRATEFUL TO NOT HAVE THE PAIN AND HASSLE ASSOCIATED WITH THIS HORRIBLE BUGGER CALLED THE PILONIDAL CYST, but as a young woman, I can't help but feel anxiety when bending over to pick up a piece of paper because someone may see or ask me about my "fake butt crack." That coupled with not being able to feel comfortable in a bathing suit because of the scars that the hidradenitis boils have left on the inside of my thighs or not being able to raise my hands over my head when I'm dancing in a sleeveless shirt or dress for fear someone may notice the sinus tracts under my arms has just really caused me great emotional pain that I fight often to suppress.

I don't want to sound vain or ungrateful, but I just wanted to share my story with people who know EXACTLY what I've gone through and am going through. Thanks for reading. ~Tea~

Date: June 10, 2009

Story

June 10, 2009 Hi Everybody - I feel obligated to post my story here. Your stories encouraged me to take care of my "hairy mans butt disease" (can you believe they call it that?)...

I had my first "flare up" two years ago in september. About a month earlier I had kidney stones/infection and laid around with a high fever for weeks. Then I ended up with this thing on my butt. I really didn't want to tell anybody that I had this problem, I just though it was from laying around sick and that maybe I didn't clean myself good enough? It was summer and I am a sweater as it is. I kept this to myself for a couple of days, I think by the 4th day I could no longer walk. I had a huge blood blister looking lump the size of an egg hanging off my backside, I couldn't walk, stand up, sit down or do anything but lay on my belly in my bed and cry. Then in the middle of the night it "blew", I looked like someone shot me in my butt, for lack of a better description. Needless to say this was 100% relief and I felt better. Phew its gone, who needs a dr?

I didn't have another occurrence until next September. Now, this is my September disease. This time I went to the Dr, I remembered how awful it was last time and i didn't want to go through it again. I had done some internet research and found this website and done my own self-diagnosis. My Dr. said, yep its a pilo, here are some antibiotics you should be better in a couple of days and then if you want i can refer you to a surgeon. Well, why would I want that? I asked her for some pain killers since it was all i could do to even drive my car to her office, anyone who's had one, probably has been through the driving with your right arm on the console and the cramp in the left leg trying to hold yourself off of your butt so you can drive.. not fun. She told me I didn't need pain killers, that I could go home and take some ibuprofen. (I need a new Dr. she has apparently never experienced the pain of one of these things)

After a few days it "blew" again.. phew I thought, i can live on. This time it didn't go away. It didn't hurt all the time. Every now and again it would just flare up and then drain. By November and my wedding, I still had this thing, EMBARRASSING... time to tell the hubby what's wrong with me. Gotta love him for still marrying me, lol... He was as apathetic as he could be, i never showed it to him and he had never had one, so he doesn't really know what I am going through.

March comes along this year, and its still not gone. I haven't called my Dr yet because she told me I could see the surgeon "when its gone"... well its time to do something. She gave me a referral to the general surgeon and I had an appt for the next day to see him. Again, "yep thats a pilo" ... you think? (Everyone calls it pilo, its easier to say) It had drained already so I thought I was going to see him to schedule a surgery... boy was I wrong, he told me there's still stuff in there! OH MAN! I'M SO NOT READY FOR THAT! He tells me to drop my pants and bend over the table and lay on this silly paper pillow thing he had. He proceeds to give me about 7 or 8 Lidocaine shots that are "supposed" to make it not hurt? Well let me tell you, that was WORSE than any pain I have experienced! If I ever have to get that again, forget the lidocaine, just cut me. He told me that should do it after it was all done and that if I want to have surgery i can, its up to me, but that its going to come back. Well, I'm not coming back for this again, so lets schedule the surgery.

I had my surgery this past friday, june 5. I had the closed surgery. I had never had surgery before and I was terrified. The morning I went in there, I told the nurse I'm so scared, they gave me something to relax, and boy did that work! Next thing I know I'm climbing on the surgery table, asking questions about equipment in the room, what's this and that... I was looking forward to the counting down from 10, for some reason i've wanted to do that? I don't remember that part, don't know if I got to do it or not. The next thing I remember is being rolled into recovery when they were putting the hospital issued panties on me... whoa ladies what are you doing to me? They said they were putting my panties on me and that I was all done. Really? That was a cinch! What was I so afraid of? They gave me a coke and before I was even done with it, I was on my way out the door.

Today is Wednesday, june 10, its been 5 days since my procedure. I couldn't be happier so far. I was worried about the closed surgery from some stories I've read on here, but I am having a good one, so I have to share. I could not afford to take that much time off work or deal with the embarrassing leaks all over at work and discomfort so I opted for the closed wound with stitches. I did break a stitch this morning, going to the bathroom... sorry folks, it happens, pain killers back you up, and I recommend stool softeners. So far the only pain I have experience is this stitch coming undone. They told me I could resume normal activity a day after surgery.

Take my advice, if you have the stitches... take a week off work and lay around. Your body needs rest to heal. Its quite boring, but it helps! I have no signs of infection and virtually no pain at all. Granted I have pain killers, but I am taking them to ease the pain from the stitches and really thats about it. I feel like a new woman. I go monday to have my stitches removed and will go back to work on Tuesday.

Date: June 10, 2009

Story

Hey, Let me see where do I start with this!

I first felt something was wrong when i was 17 and being a bold girl refused to tell anyone on till i couldnt take the pain any longer (6months later) And that is when i met the lovely Mr. Stephens in mount carmel hospital in Dublin.He informed me what was wrong and gave me a lecture on waiting so long to get it fixed! As i was in my last year of school i had my final exams coming up so he decieded i must wait till i had finished those exams and had come off the pill (ggrrr!)

First surgery went really well apart from the nearly 2years waiting for it to heal with daily trips to the hospital to have dressings done. I would also have check up with Mr stephens but he was very fond of silver nitrate (Ouch!!) or just ripping the wound open with what ever was near (stitches remover,tissue) and then i got the good news it was gone!! however over the next few years it would still feel a little odd but it wouldnt feel infected so i could carry on as normal.

Now roll on 7 years and it was back! So off to St Jame's hospital. It was nice to know my surgeon remembered me but only as the smelly horse girl (I had started working on riding yard during my first surgery) So a second surgery was carried out this time he stitched it closed, it healed and i was very happy as i had a really nice nurse who fixed me double quick time!(3months) But i hadnt been out of the hospital more then 2 months and it was back! So another lecture for Mr. Stephens and the nurse! So under the knife i went again, left with a open wound which took 6 months to heal, with daily dressings. If the nurse noticed something wrong she would fix it herself without me having to wait to see the surgeon. So that was all finished with at Easter.  But alas i felt something rip open 2wks ago and guess who am going to go see shortly!! well thats if he hasnt retired! how many people can say i have had a surgeon look after my ass for the last 8years!! so all my fingers are now crossed that this will be the last time i have this evil thing!!

The best thing to come out of this is, nothing can embarrass me ever again!(good thing to as i know work in a sex shop!!) So good luck to anyone who has this!!! Rachel :)

Date: June 05, 2009

Story

Hi, my name is Jo. I first had Pilonidal cyst about 2 years ago. The pain was unbearable, couldnt even sleep. When the doctors knew what it was i was referred to hopsital and the next day i had the operation. They left the hole open and i had to have it packed everyday until it closed. Thought i had the all clear until a year later the hole was still open and again i was referred to hopstial where they told me i needed another operation. This time they closed the hole and my chance were better of not getting it again. Recently ive been having some pain in the area and went to the docotrs today where they told me that it has come back. This will be my third operation. Im finding it hard to cope with this one, and is going to be for the rest of my life? I am 19 and a woman which is rare and dont know anyone who has had this. Also i recently started a new job and being off for about 4-6 weeks doesnt look good. I hope no one else goes through this three time.

Date: June 05, 2009

Story

I'm 20 years old and currently stationed in Germany.

About two years ago I was in High school doing sit ups in the Phys Ed class I had. I noticed a slight tenderness around my tailbone and thought nothing off it(we were on the hardwood floor after all). After a while I noticed the pain around my tailbone hadn't gone away, and it had begun to form a red lump on my hindquarters. I went to my family doctor as soon as I could and sure enough, he informed me that I had been attacked by the Pilonidal monster. I went in for a pre-op and then finally had the 1st surgery. I choose to do a limberg flap because of the quick recovery time. I woke up two and a half hours later gasping for air and had no idea where I was. One of the house nurses came up to me and informed me that I had just left the O.R and that everything went just fine. I looked down under my skivies and it looked like they strapped a couch cushion to my rear end. Two years later after I joined the Army I noticed my scar had begun to get a little tender every now and then. One day it got so bad I couldn't even sit down in my car to drive home from work. I went to the local Klinikum they have here and sure enough, it seems the Pilonidal monster has struck again. So far I've already had it lanced and I'm currently waiting for my 2nd pre-op. DO NOT LET AN ARMY DOCTOR PERFORM A LANCING ON YOU! IT FELT LIKE THEY USED A CHAINSAW ON MY HIND QUARTERS!

Anyway if you think you might have a bite mark from the Pilonidal monster, don't wait GET IT CHECKED OUT!

Date: June 04, 2009

Story

Keenan again... to add to my post. I did get surgery again on Monday June 1st and the doctor isn't sure if I will have further issues or not.

Date: June 04, 2009

Story

My name is Keenan. I was first diagnost with a Pilonidal Cyst 3 years ago. I got it lanced and let the surgent remove the cyst. They closed the wound and it left me bedridden for a week. I thought I was in the clear, but a year later I started having trouble sitting down for long periods of time and I had to take frequent blatter breaks. It wasn't until 2 months ago when I started to worry about another cyst, I had some drainage along with some pain but I blew it off since I'm in the Navy. Wrong decision... last Thursday the bastered came back with a vengeance. It drained a lot and the pain was horrific. This was soo different than the Pilonidal Cyst I had... this time I had a sinus and the problem was right around my rectum. Needless to say I was in the ER on Monday night. The wound is still open so I'm trying to keep the area clean, I have to clean it after every bowel movement. The wound still drains, but so far no signs of another infection. Right now I'm nervous that I will keep having issues; I'm a very active person and this is ruining my life. If any one has any advice on what I should do please email me at patriotrocketk at yahoo.com

Date: May 31, 2009

Story

Hello,

First off, I would like to thank everybody for their stories they have posted, they were a huge help. Therefore, I wanted to finally share my long story. I am currently lying on my side suffering my second pilonidal cyst. Oh, how I haven't missed this pain...

I am an 18 year old female and this all began nearly a year ago. My husband and I were living in New York at the current time and one day my tailbone started hurting. I just thought I merely bruised my tailbone doing something the previous week. At first, I waited it out to see if it would go away on its own. I tried everything from hot baths with Epson salt to squeezing it to make it pop. By the way, not such a hot idea. When I realized that nothing was making this wrethced thing go away, I started Googling "tailbone pain" and I stumbled upon this site. This site was extremely helpful but dreadful at the same time. I knew this is what I had.

In the days following my research I was still trying to use at home remedies praying one would work. The last thing I wanted to do was go to a doctor and show this thing to somebody. Another bad idea. My husband wasn't much help either, he has quite a weak stomach. He knew I was in pain and he did all he could to help me feel better, but eventually I came to the conclusion that I really had to go to a doctor. But stupid me still did not go immediately.

I decided to drive down to Virginia to see my family and made an eight hour drive by myself. Yet another horrible idea. I was crying because of the pain half way through my drive and was contemplating pulling into the nearest ER. Somehow I made it to my mother's house and immediately turned around and went to the ER.

When I got there I was waiting for four hours! I couldn't sit it hurt so bad and was standing and crying in the waiting room. Eventually, they had to put me in a bed so I could lie on my stomach while I waited.

So after those grueling hours I was taken into a room to have my cyst lanced. The doctor was glad that I had come in "so early" but all I could think was "how on earth could somebody deal any pain worse than this?" But he went to inject local anesthetic and that is when it got worse. The pressure of the anesthetic going into the cyst ruptured it and he had to immediately lance it with no anesthetic at all. Needless to say, I screamed and cried the entire time.

After that, it was clear sailing. He gave me some vicodin and antibiotics and sent me on my way with an after care sheet. Pulling out the guaze was a bit painful but simple. I hoped and prayed this would never happen to me again.

Here I am though. I've been in pain for three days now and have done nothing about it. Once again, I hoped it would go away. I'm going to the doctor first thing in the morning.

In conclusion, DO NOT WAIT, GO TO A DOCTOR! Good luck to everybody and I hope my incredibly long story has helped!

Date: May 31, 2009

Story

Hey ya'll, My name is Stephen and i am now 17 years old but my issues started when i was only about 15 years old in the middle of my freshmen football season. During the football season i started noticing a bit of blood on my gurdle after every game and i thought it was just a hemorrhoid so i decided i would let it take its course and move on. Well after the football season ended it was still there so i had to show my mom (very embarrassing). I went to the doctor and he said it was serious so i was thinking, fantastic!! (sarcasm of course) the next summer i had it removed. After that surgery it stayed open for a while so we went back and they decided to send me to a plastic surgeon to try and close it to heal. Well, after the 2nd surgery still didn't work. Then, after the 3rd surgery, still didn't work. Then after the 4th surgery, STILL didn't work. The worst part of the 4th surgery was it was the same time My brother was in boot camp for the United States Marine Corps who i love very dearly and is very close to me! Finally after the 5th surgery its finally improving and healing the way it should and i am thankful very much because i don't know how much more i could handle after 2 years of this nightmare and i am very thankful for this website and anyone who wants to talk about anything email me at Disturbedmw0077@aol.com i would love to help in any way!

Date: May 30, 2009

Story

Hello,

My name is Ronnie and below is my long story concerning my ordeal with the pilonidal cyst.

To anyone who has this pesky pilonidal cyst please do not wait to have surgery hoping that it will go away and things will return to normal! It will not go away!

I had my first experience with it at age 20 while in the US Navy. I was flown from Sangley Point in the Philippines to Subic Bay, Philippines for the surgery. The flight aboard a DC-9 strapped in a cargo net was very painful on my butt!!

A young inexperienced Lieutenant Doctor laid me out on a small table and commenced to flay me open then cauterized the wound and stuffed it with gauze and told me to go back to Sangley Point at my leisure. Since there were no flights out that day I decide to take a local bus traveling down a bumpy mountain road loaded with humans and animals.

Once back at my home base I took daily soaking baths to clean the wound for several weeks. At the time I was on sick duty and my flight crew wanted me to start flying with them again aboard a seaplane since they were short-handed. What many bumpy flights that turned out to be even using the “donut hole” to ease the pain of sitting and bouncing up and down during the flights!

Well all the care I was taking did not heal the cyst while I was in the Philippines and once I returned to my home station at North Island NAS I continued the baths to no avail. My squadron doctor finally sent me to Balboa Hospital in San Diego where I was severely castigated by a doctor with the rank of Captain (0-6). He accused me of trying to obtain veteran benefits from this infirmary which had never crossed my mind.

Once he performed the second surgery on me to remove the cyst once again he changed his tune completely telling me that the Lieutenant who had performed the initial surgery should be court-martialed for what he had done to me while performing the first removal.

After several weeks in the Balboa Hospital while an ambulatory patient I finally recovered enough to return to my squadron. And for the remainder of my enlistment I had no further complications from the second surgery.

However, about three years after the second surgery the cyst returned and I had to have it removed for the third time, This time a respected civilian surgeon removed the cyst and I remained in hospital for two weeks and took soaking baths for several weeks after being discharged from the hospital.

I am now 64 and have not had any indication of the cyst returning and I pray that it will not!

Date: May 29, 2009

Story

Hey everybody, I'm a 19 year old female and I just got rid of my first and hopefully last pilonidal abscess.

It all started when I felt pain over the top of my tail bone region, and I ignored it because I thought I had just hurt my tail bone and it would get better...it didn't. The pain got progressively worse until it hurt to sit, lay down on my back, and eventually to even walk or move certain ways. I'm pretty stubborn, and I thought it would get better on its own so I let it go, but when it got to the point that I was missing my college lectures because I couldn't sit through class I knew I had to take action, find out what was wrong with me, and go see a doctor rather than pretend this problem didn't exist. I did some research online, and actually came across this site. After reading about this "disease" I kept thinking...please don't let that be what I have.

I went to the doctor shortly after and told him that's what I was suspecting, and he confirmed my fears. Now let me tell you exactly what I was thinking, because if you have it you're probably thinking it too, "why did this happen to me?" Yes, it is something that you would never in a million years think would happen, and you feel all embarrassed and alone like no one else would understand. The point is though, these things are more common than you think, or at least that's what my doctor said, which I found sort of comforting. Anyways, my doctor gave me antibiotics and vicodin, and told me I could get it drained in my home town since I was going home the next day and it would be difficult to do while living at school in a dorm with a roommate that just wouldn't get it. That night, I felt some wetness near the abscess, as it turns out, it had popped. A LOT of it drained, which made things a little more bearable to fly home since sitting on the plane was going to be quite unpleasant. After getting home, it drained on it's own even more. Yeah, it's pretty gross, but the draining makes it feel a lot better.

The next day I went to the doctor to have it incised and drained and packed. Let me tell you, the shot is the worse part. The rest didn't hurt me at all really, although it stung a little when they flushed it out. I even listened to my ipod the whole time :). My doctor was really nice, and she was gentle and moved as quick as she could. She put a draining wick into it, and I have to go back in a few days to get it out, and then it's all about the healing time. I know this was a longgg post to read, but when I went on this site, the posts were mostly comforting to me, like I wasn't all alone. Just, if you think you might have one...go RIGHT AWAY to the doctor. The earlier the doctor takes care of you, the easier things will be and the sooner you can get back to normal life. Having a pilonidal really sucks, but just know you're not alone.

Date: May 29, 2009

Story

Hi, I am actually from Scotland and stumbled across this website by chance whilst looking for info about pilonidial sinus (medical term for this in the UK).

Here is my story. About 9 months ago (Sept 08) I noticed a pain at the base of my spine. I thought nothing of it for the next month or so. In Oct 08 the I noticed a red spot at the base of my spine which was tender and often gave me pain whilst sitting for long periods of time.

I went to my GP (doctor) who advised it was an abscess and gave me antibiotics. He advised it should clear up, but if not I would need to get it removed.

By December 08 the problem had still not cleared and I went back to my GP to advised it would need to be removed. During this time the abscess would often burst and bleed and I had to constantly wear dressings to ease the pain. Wearing jeans and trousers was often difficult (I am female).

In the UK we have the NHS (national health service) - we do not pay directly for healthcare, but via our taxes. This means that we often have to wait for treatment.

So wait I did, and I went to se my surgeon in March 09. He advised he would be removing the sinus and would close it if the wound was not deep, if it was it would need to be packed.

My operation was scheduled for 20 May 09. I was not particularly nervous about the operation as thought it would be routine and this problem does not seem to be overly common in the UK.

As it turned out the pilonidial abscess was larger than originally thought and two abscesses were actually connected. The wound was around 5 inched long, and about the size of a golf ball at the top. Much larger than I expected!! I stayed in hosiptal overnight and the surgery tok around 45 mins. I was quite sore when I woke up after the anasethetic. I was given painkillers which helped, but it was difficult to move with ease and go to the bathroom etc. The surgeon was unable to close the wound and therefore I am having to have the wound packed daily by district nurses. Each day I have a sit bath and allow the packing to come out then I rinse the wound. The nurse then re packs the wound. It has been 9 days since the surgery and it is healing - but the wound is still fairly deep. I am off work and will probably need to take another week off work.

The nurse think there will be another week of packing the wound (at least).

I was very active before my surgery (running, gym, pilates etc). I am finding it hard not being able to exercise and feel I have put on a few pounds. Also, I am having to wear loose and comfortable clothing - such as jogging pants and leggings. Sleeping with the packing is difficult, I have to sleep on my side. I have been eating high protein foods such as chicken and fish to try to help speed up the process. I hope the surgery will be worth it and really hope the abscess doesn't come back!!

When I was told I would need surgery to remove it, I thought nothing of it - I thought it would be really simple and I would feel fine in a few days. This hasn't been the case for me - but I think this is because the wound had to be larger due to the extent of the sinus.

I will moniter my progress and post again in a few weeks to let you all know how it is healing.

Thanks for reading and hope this helps anyone getting ready for the procedure.

 RMB - Scotland

Date: May 29, 2009

Story

First I have to say I am sorry to all of you, but am so glad I found this site. I got my first flare up at age 15. My dad gets boils often so he knew what it was and told me to put warm compresses on it. I did. I had to stay home from school for a few days because it hurts so bad I couldn't even walk. When it did finally drain the smell was awful. My twin insisted on "helping it" drain. The pain was so bad from her touching it I fainted. That was the only time I'd ever fainted in my life. I went five years without any issues until age 20 when it flared up and drained again. Same excruciating pain. I never thought to even call the doctor, I just took care of it at home. I am 31 now. In the last 11 years I've had times where I was uncomfortable and thought I felt something, but it always went away. However, a few days ago my tailbone started hurting, lower back hurting so bad it was almost knocking the wind out of me. I went to urgent care and got some vicodin and they referred me to a surgeon. My appointment is next week. After reading all the horror surgery stories though it almost sounds like I'm better off trying to deal with it on my own. The other weird thing is that the cyst isn't a boil just yet. It's uncomfortable but there's nothing at the surface, it's actually buried pretty deep. Should I be worried? Email me at spencersgirl at comcast.net.

Date: May 27, 2009

Story

I am really glad I found this site. I'm glad I'm not alone. I am 29 years and I've been dealing with this disease for 10 years now. In 1999, I started to feel pain in the lower region of my back. At first I thought maybe I had bruised my tailbone. I dealt with the pain for a while until I started to feel pressure like something was building up. I went to my family doctor told me that I have a pilondial cyst. So he lanced it, that was the most painful thing I ever encountered. Plus the drainage smelled so bad. I hated to let anyone come around me. Anyways i ended having to get it lanced a few times until he recommended I see a general surgeon. After meeting with the surgeon, I agreed to have the cyst excised, I don't remember how deep my excision was but the pain was unbearable for a few weeks. The packing was so gruesome, after a few doctors visit the cyst keep flaring up and i had to have it excised again. This time he went deeper. After a couple of months I started to heal but the opening never fully closed.

So now its 10 years later and the cyst flares up again and thank goodness the opening never closed because it allowed the cyst to drain. I started to experience the same pain I felt before all over again. I went to a Colon and Rectal specialist and underwent the same procedure again. Well the third time around wasn't so bad. After a week or so I was back to normal, but my doctor notice my opening wasn't closing from the inside out. She had to cauterize the area a few times, which was painful for about a day or so. So she recommended I get the opening closed and the recurrence rate was like 5%. She explained that the procedure would require less recovery time like 6 weeks vs. a lifetime of healing. Its a flap procedure where they move tissue over the opening to close it. I will be in the hospital for about 3 days. I'm scheduled for surgery in about a week. I am really nervous because I have never to had to stay in the hospital overnight. Once this is done...I will be able to enjoy my life and feel comfortable wearing jeans and sitting. I never want to experience this again. Thanks for listening everyone......Mela

Date: May 26, 2009

Story

I'm a 26 year old male with a five year cyst that has been hell on my life. After the second year the immense pain that would occur occasionally stopped thank god and it only hurts when it flairs up really bad. For some odd reason it only flares up and bleeds after I eat something high in fat and sugar which is really unusual. During my cyst suffering I've been suffering with other weird symptoms such as fatigue, extreme hunger, numbness in the hands in feet, blurry vision, lack of enthusiasm for things I like to do, mood swings, body aches, temper tantrums, flu like symptoms etc. I'm guessing it's because of the cyst that I'm having all these problems. Doctors keep telling me that I'm not diabetic either. It's gotta be because of the infection on my ass that won't go away. If anybody can help me or give me some advice please tell me what's happening to me. I'm losing myself and it feels like I'm literally dieing slowly. I want to become a Police Officer for Houston Texas and I can't do it with this bullshit on my ass. Please if anybody can help me I would appreciate it. E mail if possible at hawaiinwarrior21 at yahoo.com Thank you for listening.

Date: May 26, 2009

Story

It was the summer of 1981. After spending two years studying in California, I went back to my native Caracas to finish my schooling there. Little that I knew what Caracas had in store. I went swimming with some friends at a local pool. Being a teenager I wanted to show off my diving skills until I made a mistake and hit the bottom of the pool with my coccyx. Three days later the pain was brutal. I couldn’t stand, sit down, lay down. I had fever. It was hell. A doctor came to my house to check me out (I know, back then doctors still had house visits, at least in third world countries). She took a look at it and knew exactly what it was. She proceeded to drain the pus. (Now I found out that without local anesthesia what she did was barbaric but I guess this “barbaric” procedures were not limited to a country in Latin America, it also happened in the United States... go figure).

Despite the horrible pain, whatever this Doctor did worked out for me for the next 28 years. That’s right 28 YEARS!!! And this is just a list of activities I’ve done in those 28 years: close to 200,000 air-miles, 30 plus scuba diving trips, jet skiing, countless hiking, backpacking, camping, kayaking, bicycling, golf, tennis, cross country skiing, snowshoeing. Name it. I know, the only thing I’m missing is jumping off a plane. But I ran out of luck last week. 28 years later...

I went to bed Tuesday night and woke up in the middle of the night with that pain. Once you had it, you never forget it. I called my primary right away and luckily he saw me that same day. Sure enough, my pilonidal was flaring up. He sent me antibiotics and painkillers. I call them “happy pills”. Suggested I contact a colon & rectal surgeon. I called first thing Thursday morning but they all have taken off for the long weekend. Hopefully I was able to attack the infection on time. As you can see, each body is different. Maybe if they get to drain it, without having to have a lancing or excision, I’ll be able to go my happy way for another 28 years.

Good luck to all and hang in there!!!

natalie miami, fl

Date: May 26, 2009

Story

I have posted on these boards before, so here's another update: While I was at college from fall 2007-spring 2008, I had a severe flare-up that landed me in the campus medical center, who then referred me to a general surgeon an hour away from campus. I didn't need surgery that time, which was great. Right now, I am getting over a flare-up. I felt the cyst come back over the past few weeks and out of the blue on sunday night, it popped. I felt so much better when it popped. Surprisingly, it wasn't as severe as the flare-up from last year, which is great. Each day with pilonidal disease is a battle for, since I have to check and re-check my incision for a flare-up. Keep fighting this everyone-we'll get better together. Signed, Kaitlin from NJ

Date: May 23, 2009

Story

Hi there, I am a 36 year old woman. I had always noticed my tailbone felt bruised from doing situps from about 14 years old or so, but I first had a real flare up 10 years ago, it was resolved quickly with antibiotics. My nephew had one the same month coincidentally and he took antibiotics and squeezed it intensely until it burst...he has not had any problems since. Mine however needed antibiotics again almost 4 years later...and resolved. It was fine until I was almost 4 months pregnant with my first...then I needed my first dreadful lancing. Lancings are awful, and should be done with some sedation in my opinion. Following that lancing it flared a bit during the next 2 years, I just soaked in the tub, and used antibiotics twice. It flared up to an absess again 2 days after having my second baby last April. I have had 4 courses of antibiotics in the last 14 months. I watch over the cyst very carefully, eat minimal sugars, rarely sit, and when I do sit use a special coccxy cushion, soak in the tub daily, exfoliate with a special glove and Neutrogena Glycerine soap, dry the area with a hairdryer, closely monitor for any hairs on my head getting in my clothes,meticulous hygien and try to eat well. It keeps it at bay...I cannot exercise as that causes it to become irritated. That is hard for me because I used to love runing, yoga, pilates (which i wonder is what aggravated it to the point of lancing to begin with!)

I am seeing a colon rectal surgeon in about 2 months and will see about if conservative or the cleft surgery can be done this fall. I was scheduled for an open excision last November, but after doing much research I decided against it. I was going to go to see Dr. Bascom, I spoke to him briefly, but coming from canada decided it was too expensive. I am so hopeful this will help me to get on with my life. I am concerned I will never be handle to handle road trips or long plane trips. My husbands family is in Argentina and we usually go every 2 years. I have had moderate flareups after each long plane ride.

Date: May 13, 2009

Story

Hi I'm 52 and recently had the excellent experience of having my second pilonidal excision, but this time with a cleft lift, performed by one of the surgeons listed on this site, Dr. Jeffrey Sternberg. He works in San Francisco and I traveled there to have this surgury done. There is simply no comparison to the post-surgery drudgery of the old technique and the new one with the cleft lift. It is far more manageable with his simple and excellent directives. As the Dr. Bascom article indicates, I now have a basis for being hopefull of an uncursed life because of the cleft lift's track record. I was given the care knowledge and used it to avoid any infection. I whole-heartedly recommend this surgery, Dr. Sternberg, and his team to everyone that may be seeking something of this nature!

Date: May 13, 2009

Story

My name's Jessica and here's my tiny story. I've been a computer gamer for nearly a decade, it's what I did (I'm retired from it 'cause of college.) Anyways, I noticed the uneasiness and pain from it for a few days. It seemed like nothing, so I didn't even bother with it. After a few weeks of this, it became apparent that there was a problem. One morning, I woke up to screaming in tears, and my Mother was becoming hysterical. When I finally told her what the pain was, and what was going on, she told me that we had to immediately head to the clinic.

The doctor told me it was polinidal. With that, I was scared to death. She put me on an antibiotic to ease it, and hopefully stop it. She also told me to soak around 2-3 times a day in hot water with a salt mix in the water (since salt helps with wounds). So we did the mixture, and it eventually caused the thing to pop, which was EXACTLY what we wanted. However, the puncture wound of the pop wasn't big enough, and it wasn't draining enough to do any good. So, the next morning, after cleaning it up and padding it with some gauze, we went to a specialist in this sort of thing. Apparently, the infection had gotten bad to the point that puss was spreading across my lower back. So he had to perform there in the office. It was NOT fun. I was screaming so loud and was in tears for half an hour while he sliced me open (since numbing me would do no good from all of the fluid down there already) and drained (and let me tell you that stuff freaking STINKS!) When the draining was done, he sanitized me up, used gauze strips to go into the hole, and gauzed me up. As soon as I stood up, I felt about ready to pass out and faint. The exertion was extreme, so it had caused me to have the dizziness I had. When I left the room and went out into the main waiting room, everyone looked at me as if I had just came back from dying. One of the nurses even asked me if I was going to be alright (which I finally was.)

However, it stirred up a bit a few months after wards, but it was not major, just slight pain, but took care of it with proper hygiene. Sadly it's starting up again, but taking immediate action on it, hopefully I'll be alright. :)

Date: May 12, 2009

Story

hello everybody,my name is kimberly and i am 29 year old.i am lucky to say that i have been free from my polinidal cyst for about 6 years now.but before this 6 year break my life was a living hell.

i was 12 years old when i first noticed something very painful right at the top of my buttcrack.and like many others i was ashamed and embarressed.i was scared to tell my mom that something was wrong.my mom worked a lot (single mom). i didnt want her to have to bother with my issues. but then my mom noticed that i was not walking the same and asked me what was wrong.i told her and she immediatly took me to the emergency.

the doctor told me that i needed to get it drained right away and i needed to be put on antibiotics.well about two weeks later it came back.i was then sent to see a general surgeon,which i became well acquainted with over the next several years.from the age 12 to 23 i had my cyst drained 22 times and removed twice.during both removals they used a local anestetic,which did not work too well.i woke up in the middle of both procedures and felt everything.it felt like they had a spoon deep inside of me scraping everything out.absolutly awful..it took very long to heal after every surgery,so i lost all of my teenage years just laying there recooperating.when i found this site it acually made me sad.no offense to the older people who experience this awful thing,but the soft spot in my heart goes out to the younger ones.i know how horrible it is being a child/teenager going threw this.and at that age,let me tell you,it feels like no one understands.

so i just want to let all you young sufferers know that your not alone,and to take advantage of the time that you are free from your polinidal,because it really does make you appreciate the good times.again,my heart goes out to you.keep smiling and try to be positive. YOU ARE NOT ALONE!!!

Date: May 12, 2009

Story

Hi, I am 16 and have issues with pilonidal since October, 2007. I first noticed the issue because I had a lot of blood on my underwear when I woke one morning. I told my mom and we went to my pediatrician. He put me on an antibiotic and told me to come back in ten days. Ten days later, it wasn't any better. He switched my antibiotic and again said to come back in ten days. Again, i go back and this time he refers me to a specialist.

The specialist thought I didn't need surgery. He decided that it would be best to use silver nitrate to cauterize it. Silver nitrate BURNS. It was the first of many painful treatments they used.

I had a silver nitrate treatment done every week until the middle of January, 2008. Finally he says, "I am on the fence about your surgery." He presented my mother and I with a few differnet options and allowed us to decide. I thought it would be best to just get rid of the whole thing. We scheduled a surgery for the begining of February.

They told me it should be healed up in about two weeks or so. After three months, it still wasn't healed. My speacialist finally referred me to the wound center. There, I had four more months of silver nitrate once a week and occasionally they "reactivated" the wound. I had to sponge bathe because they didn't want extra bacteria to rince into the area. I also couldn't swim in the summer nor could I take Behind the Wheel.

Ten months after my initial flare up they pronounced me healed. About four months after that, it flared up again. I then had another month of silver nitrate treatments and I was healed again. Another three months goes by and it happens again. Now, I'm supposedly healed, however I came to this site to see what I can do to help prevent this from flaring up again.

I would tell anybody who is going through this to request surgery right from the start. It seems that's the best way to go. I hope my story isn't a discouragement but an encouragement. It should encourage you to know what you can do to help your doctors fix you instead of going through it blindly. Good Luck!

Date: May 11, 2009

Story

I woke up one morning with what i thought was a bruised tailbone and didn't think anything of it. Two days later i was in the emerdency room at midnight. Three hours later i finally saw a doctor who briefly explained what it was, lanced it, and sent me on my way. The lancing hurt alot but it isn't unbearable.

I still had significant pain for a couple of days before i got in to see a regular doctor. This one told me he had some experience dealing with these and then he took a look. Apparently the E.R. doctor didn't do a very good job of lancing so i had to get cut again. The worst part was when he started squeezing out the discharge before he lanced it. This guy did a way better job and i didn't even feel pain after he numbed me.

Two days later i went to see david thompson, M.D. at the colon and rectal clinic in houston. I was there for about 5 minutes total. He looked at it, probed it, and told me i needed surgery. I had my surgery the very next day.

It has now been 3 days since my surgery and everything seems to be going fine. The only pain i have is during the packing, which hurts quite a bit. If i had to give any advice it would be to just get the surgery as quickly as you can.

PILONIDAL DISEASE SUCKS!

Date: May 09, 2009

Story

I am 23. I had surgery to remove a pilonidal cyst on April 20th 2009. The incision was 4 1/2 centimeters deep, 22 centimeters long, and 4 centimeters wide.

I had the cyst for about four years. I thought that it would just go away and thought nothing of it.

It started to get bigger and bigger, and started to affect me on the job.

My back felt like it was messed up when it was the cyst doing the damage.

My parents told me I need to get it taken care of. I went to the doctor thinking they were just going to numb it and remove it there. They told me it would be a long healing process and that I would have to go through surgery.

I went through surgery and they put me on the wound vac.

I was embarrassed by it for a while so I wouldn't go outside my home.

I started to become aggravated with the vac. I was only able to sleep on my side. If I didn't it would leak and I would be waking up in the middle of the night.

I had to go to the wound care nurse twice a week to get my dressing changed. The third time was the most painful because I was healing so fast and the nerves were growing back. they had to give me morphine even though it still was agonizing pain.

In three weeks I went from 4 1/2 centimeters deep to within 2 centimeters. 22 centimeters long to 18 centimeters. 4 centimeters wide to within 2 centimeters.

I get aggravated with the vac... but I like the fact that I am healing so quickly.

I am an athletic person and I started to lose muscle mass just laying around. My suggestion is go outside and walk around the yard. Eat nutritiously as it will help the healing process. Use dumbbells it helps with the muscle mass problem.

The wound vac is undeniably the way to go!!!

Date: May 08, 2009

Story

Hi, I am 44 years old. I had Pilondal when I was 22. I am fortunate to have had only one surgey. I did not know until recently it was a disease. My daughter is 21 and just yesterday she phoned me and told me she was in the hospital getting this thing drained. She explained more about it and I said that is funny I had that too, she said it is heriditary, so I did some research and found this site. To this day it flares up but then goes away after I take a warm bath. When I had it no one explained anything to me I thought it was just me, I never realized how many people live with this or that it is something you live with for the rest of your life. I am so overwhelmed by this info. Monica

Date: May 08, 2009

Story

My 16 year old daughter was diagnosed with the disease just a few weeks ago.Qick care put her on antibiotics and told her to see surgeon on Monday.They didn't wnat to touch it. We were advised by a friend to soak in epsome salt baths for 20-30 minutes twice a day. We did that SAT day and it broke Sunday morn and drained on its own. She felt soo much better and I'm relieved she didn't have to experience what many have shared. She is healing up nicely, her surgery is scheduled next week. We plan to "nip it in the bud" if thats possible.Hopefully things go well. I am a nervous mom and don't want to see her battle with this for years to come. Maybe we'll have good news to report down the road!

Date: May 07, 2009

Story

Well after reading the stories on this site I feel a lot better about my situation. I know that I am not alone. I never thought anyone else would have to deal with the problems I have come across over the past year. I am only 21 years old and never thought I would have to deal with this. I first went to Urgent Care in August 2008 after a week long road trip and I had a large bump on my lower back which was extremely painful. I went in by myself just expecting some anti-biotics or something. As soon as the doctor saw it he said he needed to "open it". I had no idea what this meant. But he made me lay down on the table and with no anesthesia and barely any numbing he cut my backside open in definitely THE WORST procedure I have ever been through. He said that it needed to drain and I had to return every other day to get my bandages changed. This would turn out to be the second worst procedure ever, because every day I went back I met a new doctor who would look at my backside and pull all the bandages out only to stuff new ones right back in. I was then told to see a surgeon because it might need to be removed.

I had my first surgery in December of 2008. My surgeon believed that my wound looked good enough to close, which he did, however it ended up opening back up. I then had a second procedure in February of 2009 to clean the wound. It is now May and I am still not healed. I am hoping that this will be the end of it with no more surgeries for a long long time. I am still in pain from the surgery site and still changing my bandages every single day. Just know that these things can be fixed. That is what I keep telling myself, and I'm sure it will be fixed soon enough. Keep positive! ~Ali

Date: May 05, 2009

Story

I am here to learn more about this because of my husband. He seems to get a cyst evert year. And every year, he has to have it surgically removed. The first (Feb. 07) and last (Jan. 09) were closed and the second (April 08) was left open and was packed daily. We seem to hold our breath every year hoping that it will not come back.

Last years cyst was the worse. He had let it go for so long, that it got so infected that he was barely able to function. When he had finally had enough, he was out of town over 6 hours away for work. He had to ride in a truck with other men back home. It was very painful for him. I took him to a local ER and was AMAZED at what happened. My husband was put in IV antibiotics that I had to administer at home. He suffered for several days after that, until his cyct burst. While he felt relief, we also knew that something had to be done quickly. We went to a general surgeon the next day for a consult, several hours later my husband lay in recovery in a lot of pain. It took several months for his wound to comepletely heal.

As I said, it came back and he had to have surgery again in January. Just recently he has started to have pain again, right above his scar. We are at a loss about what we can do and are scared that it is back already. Does this ever go away completely? I know that it could be hereditary and I hope that our 5 month old son does not have this same problem.

I just hope that it goes away and never comes back again.

Date: May 05, 2009

Story

Hello everyone! First of all I need to say how wonderful this site is. At this exact moment I'm going through a flare up and I was really feeling down and blue because it has been more than a year since my last surgery and I thought I was done with it all. Sure I had little issue since my surgery... but they were minor. Im on vacation and as a 21 year old (using this to my benefit!) I acted careless towards my wound. It is healed of course, but Ive been doing too much and not really sitting properly nor cleaning in the proper way I usually do (usually I clean the area with gauze when I shower, eventhough the wound is closed it seems to really work for me!).

So here goes my story.

When I was 17 and a freshman in college (2005)I had pain in my lower back, which turned into swelling, which turned into a small ball of pus, which then popped on its own. The whole process from when I noticed it, to when it popped probably took about a week. During that week I took anti-inflammatory and antibiotics (I lived in the Dom. Rep. where we get all these things without prescriptions!) I was afraid to go to the doctor and I was embarassed to tell anyone about it (because of the place where it was... yuck!). So, I let it slide.

Three months later, it happened again. By this time I told my parents and we went to the pharmacy to get a cream for boils. Well, this cream made the "cyst" mature faster and that same night I used the cream, it popped again and like the first time, i instantly felt relief when the "yucky stuff" came out.

I avoided the doctors again!

About three months after this issue (now 2006), I had another flare up and as you can see by my past flare up... mine are not the nicest types! :( I was so sad and aggravated I decided to go to the doctor. The doctor gave me all the background on what I was experiencing! I know.. I know... Why didnt I google this, honestly... I had no idea other people were experiencing such horror! So, the doctor told me when it gets really intolerable and big (YUCK!) I should contact him, so he can drain it. I was HORRIFIED! Well as the doctor said, I contacted him about three days later. No anesthesia... no compassion.... he told me to lay down and sliced my little butt open... (YES IM A DRAMA QUEEN!). It hurt terribly as he was opening but once all the junk came out I was so happy! He gave me antibiotics and sent me on my merry way.

At this point... I googled it all! Unfortunately, instead of getting more informed and comfortable with my "disease," I grew more uneasy and scared.

Begining of 2007 I had another flare up and the doctor suggested surgery. He never really explaned the types of surgeries but he stitched it up. The surgery wasnt that bad... what he removed wasnt that big either. As we all know this type of surgery has a higher probability to reoccur, and it did by the end of 2007.

At this point I decided to switch doctors. I checked out other doctors (2 more). The first one made me cry and the second one made me feel positive about my situation! :)

Finally, this doctor told me when it flares up really bad call me and we will do surgery. The morning it popped I was so afraid of what was to come, that I actually fainted while I was cleaning myself up for surgery! The doctor did the surgery (the one where they leave the wound open but stich up the borders). It didnt really hurt... but I had a hole in my ass... so I wasnt all that happy. Although, at this point I was positive because this surgery felt way more productive than the first. I had to stay in bed for approx. 3 weeks and then the Dr suggested I move around to stretch out my skin a bit.

Now, a year and a half later I find this FABULOUS website and eventhough I am experiencing a flare up at the moment I am really positive for whats to come. I have read things that I wouldve never imagined worked for this "disease". I'm planning on letting this flare up go on its own. since I have lasted a year and half taking very good care of myself, I figure this is just a slip up... since I screwed up.

It felt great to let this all out! Thank you for reading, good luck and stay positive! :)

Date: May 02, 2009

Story

Hello there! My story is nothing out of the ordinary....but I thought I would post here to remind other sufferers out there that they are not alone and the surgery is nothing compared to the flare ups! I had my first flare up in July 2008. It started off feeling like a bruised tailbone, and I was so confused because I couldn't think of an explanation. Two days later I went to the family doctor and she said she didn't see anything and said to take some pain pills and to see a physical therapist if I was concerned. Well the next day I went to ER because I was in SERIOUS PAIN which I'm sure we can all relate too! No walking, sitting, sleeping, I was just miserable. So I went into ER and the doctor there diagnosed me right away with Pilonidal Disease. He told me to go see my dermatologist right away.

So the following day ( on my 20th birthday) I went to the dermatologist and he lanced it open. I NEVER FELT PAIN TO THAT DEGREE IN MY LIFE! Wow I still get chills thinking about it... but it was instant relief afterwards. He told me to go see a surgeon he recommended. But I put it off...thinking that we'll see what happens with this. So I was fine throughout the year...I could feel pressure in that area once in awhile but nothing to serious. But on February 13th 2009 it flared up again but not as bad because I caught it in time. I went back to the dermatologist and he lanced it open again and recommended I see the surgeon, and that I really have to get it removed. So I gave in and made a day for surgery.

April 30th was surgery day. I had the open wound excision and my procedure was done with a laser! You can youtube this...its very graphic. Apparently its the best way to do this surgery. They cut open the wound and burn everything with a laser. So I have about an inch long incision thats almost an inch deep... My mom packs it twice a day. Surgery was a piece of cake! Totally knocked out and when I woke up the area was still numb from the local. It wore off about 5 hours after surgery. I have pain pills when I need them. Packing isnt so bad... its a little uncomfortable but not that much pain. I really recommend getting the surgery and move on with your life! The longer you let it go the worse it will get! Good luck to fellow sufferers and good luck and happy healing!

Date: May 02, 2009

Story

Hi I am 19 years old and I have suffered from this horrible disease since 10th grade since i was 15. The first time i had no clue what it was and took a whole week to go to the doctors i worked and even went to school in exscrutiating pain oh it was bad then i met the best doctor in the whole world i swear he's the best doctor Mcgaurgle (not spelled correctly) but he first drained it and it was the worst pain i screamed and cried the whole time but minutes later when it was over i felt much better.

About a year later it flared up again i was horrified i had to go threw the same procedure and my doc told me i would eventually have to have an open wound surgery where he leaves it open and it heals from the inside out. I was too scared thinking it would be painful. my last flare up was so bad i got really sick couldn't walk, hardly could stand or lay down everything was painful he drained it and told me i should really get surgery. I had enough with this thing so i agreed plus i wanted my life back. Come to find out surgery was great i was pilled up on perks most of the time but after the first week i felt great if i knew it woul be this good i would have been had surgery ya kno...the worst part was changing the packing other than that the pilonidal itself was 300 times worst..But now i am fully recovered from surgery about two-three weeks after completly healed and i feel better than ever. So my personl suggestion from a yung sufferer is GET SURGERY! its the best thing you could ever do Truthfully!!! Thanks for Reading!!! Good Luck To All and GOD BLESS!!!! =)

Date: April 27, 2009

Story

hi everyone, i live in Melbourne, Australia. Have had 2 surgeries to date. First one was some sort of flap procedure. Then few years later (SEP 2008) an open surgery nothing major. But now am getting flare ups and its just NOT fun. Its really bringing me down, left my full time job end of last year(2008), trying to find sales reps jobs or work from home jobs that work. After the open surgery, i swear i have had bad luck. From recovering from the open surgery, i got an ulna nerve entrapped on my left elbow, which basically just makes your two left finger go permanent pins and needles. Then not wanting to make my left arm worse, i started using my right arm more often and developed bursitis, which then had to have a cortisone steroid shot into my shoulder and still both aren't healed. AHHHH!!!! i shout out. How frustrating. Still living at home, wanting to move out, now 29yrs old, but obviously not a good idea. Life really sux at the moment. So exhausted from thinking and trying to find work. This website is great have bought myself 2 pillows, and doing my best to manage my P.S. If anyone knows of how i can work from home and make somewhat a $400-$600 AUD dollars please please let me know. Ideas or methods that really work. Good luck for all those other sufferers i feel ya. I think there should be a support group here in Melbourne, Australia would love to chat and share my pain and help one another. Thanks, take care, good luck Bruno umabola@hotmail.com

Date: April 19, 2009

Story

April 19, 2009 I am a 43 yr old female born with spina bifida occulta. About 10 years ago, I had my first encounter with pilonidal cyst. My OB diagnosed it after it had already ruptured and sent me for emergency surgery to a gen. surgeon. The surgeon laid me down on his table and used a local anesthea that did nothing. It was Barbaric! The pain was crazy and it ends up that he did not just lance it, but excised. He put a bandage on it and sent me to drive myself home.

Over the past ten years the site has flared up several times, sometimes worse than others. The lancing or aspiration process was so painful and barbaric I began refusing those treatments in preference for antibotics. Last Spring, I went to a surgeon again for a consult on having surgery again and he told me that I would most likely have a wound that would appear like a shark had taken a bit out of my back, would probably suffer sever deformity and would have to wear a vacuum on my would for a month or 2. That was a pretty easy NO.

Last week, another infection reared it's ugly head and the antibotics just would not do it this time. My gen practitioner advised me that he wanted to send me to the ER and have a surgeon look at it. I was adimate that I was not having any procedure without some working anesthesia. He assured me he would advocate for me. I brought my husband who also helped me beg the ER doctors for anesthesia and they finally agreed to do it under a general. So far, so good.

There is no reason why the medical industry can not approach this horribly painful disease with more compassion and use of pain control. They use various cocktails of anesthesia for other procedures that are often not even as painful. There's no need to treat me with such Barbaric and antiquated approaches to what appears to be a fairly common disease. Noelle Schenectady, NY

Date: April 19, 2009

Story

Hi, i had a pilondial abscess operated on about a year ago, when i was seven months pregnant. i had noticed a pimple like thing in my bum crack a few times over the years but just assumed it was a pimple. Then it appeared again one day and progressively got worse over a three day period until i went to my OB and he diagnosed the pilonidal. he drained itand it felt heaps better but it came back worse about two days later and i ended up having to have surgery under general anaesthetic even tho i was so heavily pregnant. there was no other option coz the antibiotics just werent enough to get rid of it. needless to say i was in excrutiating pain. and afterwards i had to have the wound redressed every day for two weeks. luckily, the nurses that came to my house were excellent and very understanding. they all reckoned that pilonidals were really common - even tho i had never even heard of them before i had mine.

one year on, my scar is still quite noticable and it does feel tender every now and then. if it ever gets sore i am under strict instructions never to hesitate rushing back to the doctor for a check in case its going to flare up again. this is the most painful and inconvenient (and embarrassing) thing i have ever experienced and whats worse is that a lot of people just dont understand. im glad i found this website, its comforting to know im not the only one suffering!

Date: April 18, 2009

Story

I am 19 years old and roughly 7 weeks pregnant. Not overweight at all, 125 pounds and 5'0. I discovered the top of my crack hurting quite a bit, like I hurt my tailbone or something, about a week ago. It was red and tender, but no signs of cysts. I went to the doctor and they said it was Coccydynia.. well when it turned into a boil a few days later, we realized it definitely wasn't. It looked like a small pinky lying in the crease there. My doctor/OB checked it out and decided I needed to come back later that day to have it lanced. (Since i'm pregnant they can't give me anesthetics, therefore I can't have the surgery just yet.) Needless to say, it was the most painful experience of my life. I've never cried and screamed so much. They numbed it with some freezing spray and several shots, which I barely felt. The worst part was pushing on it and squeezing all the gunk out, then the cold water to rinse it.. Very uncomfortable.

After I left it felt much better though, I could sit, stand, lay down.. It was great. I went yesterday to get it re-dressed and didn't really know what to expect. My nurse didn't really know what she was doing and just kind of dug around in it trying to put the new wic in, EXCRUCIATING. So today I found this site, in hopes to build a little bit of strength so I can carry out the rest of my dressings and finally get on with my life.

Date: April 17, 2009

Story

I think it's important for people to know, especially those of us with cruddy insurance, that this cyst has the possibility to be unworldly pain. There's no use hiding it, looking away, or calling it a pinch. if you have one and your doc is a meany, this is going to expand your threshold. period. I'm currently sitting on my cyst for the second week in. after one week of pain, it eventually ruptured. setting aside the shame of asking my ma to help me squeeze it completely flat, pushing the thick brackish pus through a pinhole, I was free to experience the full 20 minutes of hell. It decreased in size significantly, but I knew after that experience I was ready for the surgery. I needed this thing dead for sure. The doctor gave me only local anesthetic, and it was not very effective. I felt the rapid fire jabs of his q-tip as he stuffed me full of the anti-bacterial ribbon. I felt his finger inside me, and his steel tools scooping. he knew this and worked fast. thankfully, what I didn't feel was the slicing and internal scraping. afterward, he prescribed no pain killers. no vicoden. no codine. for the last 4 days,

I've revisited the pain of removing the sticky gauze and having it packed back into my tender wound. while I stood in the shower removing the ribbon, it was like a magic trick gone terribly wrong. it simply would not end and when it did, I felt weak in my knees, dizzy, and ill. since those first 4 days, it's gotten more acceptable. It's by no means comfortable, it's not even simply unpleasant, but I've grown accepting of it and I know soon it will grow even more bearable. I'm telling you this now not to prevent your surgery, but give you faith that, even without much of any medicinal aide, this CAN BE DONE. know yourself. if you need to be knocked out, if you need vicoden, get it. don't let anyone tell you to cowboy up and be a man. if you endure this, even as I do, managing only a single packing a day despite doctor recommendation, you will recover, and you will be stronger for it. Good luck.

Date: April 16, 2009

Story

Bleach worked for me I had a pilonidal cyst that was bleeding every time that I would go to the bathroom or take a shower, but I'm free of it now and haven't seen any sign of it for over a month. All I did was to have my mom shave the area with a normal razor, and then apply 1/2 strength bleach twice a day, for 3-5 minutes at a time (using a cotton swab). I did this for only a week, and it was dramatic how quickly the bleeding stopped and the bump subsided and disappeared. Now mind you, it gave me a bright red bleach burn in and around the area where I was applying it, but it seems to me that that is exactly what you want to happen: You're trying to kill not only all the germs and viruses, but also to destroy the oil-secreting cells. Before this, I had tried shaving + using alcohol and as-hot-as-you-can-stand-it shower faucet water twice a day, but those did nothing. Only Bleach did the trick; bleach kills everything. The only thing I do now is that I am careful to watch my posture.

Date: April 16, 2009

Story

Great big sigh.....Hello, my name is Carla and I too am a long time pilonidal cyst sufferer..I am 39 and my cyst started in my early teens. Boil like at first,like a white head. My mom is a nurse so she'd open it,just the head and dress it...antibiotics were always on hand so we'd do that too. Sits baths etc. I had it lanced in the Dr office maybe 6 yrs ago. It was evacuated and packed ,and we had to irrigate and change the packing daily. Fast forward six yrs, it never went away,it would flare ,the Dr would put me on antibiotics, it would calm to a dull roqr..on and on. I was told I needed the big surgery, but with 4 kiddies,it was never optimum time.

In Jan of 09 I had my surgery, the first one. The Dr used the blues dye to find the tracts,cleaned it all out, and closed it. Sits baths, antibiotics, that i had a sever allergic reaction to....anyway...pressure continued to build behind that incission ,and on April 4, I had to have it redone. This time left open ,and packed. They used a ton of antibiotics during surgery, and so didn't come home with any. Here is a side note...I have become allergic to so many antibiotic over the years,as a result (I believe) of being on so many for so long...not good guys,anyaway,I am a week out of the second surgery,and dressing this twice a day,cleaning etc...the pain is getting worse,and there is yellow puss again...NOW my question is this...Have any of u ever had a bone scan to see if there was bone infection,causing the recurrances? Have any of u pursed an infectious disease Dr? if so how did u make out? Any input is much appreciated. I am very frustrated ` and discouraged at this point....I'm all ears~ ty in advance ~ carla in Pa

Date: April 15, 2009

Story

I'm 20 years old and I first had the boil appear when I was 19. I lanced it myself, which was stupid, and it drained A LOT. My Dad is a physician and he thought it was just a boil or something. Well I dealt with drainage and only minor pain occasionally but it was very embarrassing at times.

Well I decided finally that it was time to take care of it. After over a year of "dealing with it". I went to a surgical consult who agreed with my self-diagnosis of a Pilonidal Cyst, I'm a medical student. He scheduled surgery for a week later and the surgery went just fine. He did say he was surprised I wasn't in more pain because I had two cysts and four sinuses and they were infected.

The surgeon placed four drains and some stitches. He did the incision of the mid-line, which is definitely the route to go. After a week the drains came out, there is a lot of drainage but it's totally worth it. After another week all the stitches came out. The drainage completely stopped a week after the stitches came out.

I'm a month out and I feel great. There is no pain sitting and there is no drainage for the first time in over a year. I would highly recommend doing the surgery. It's so great now. The sinuses are almost all completely closed and should be totally closed by the weekend. Having "lived with it" and now, there is no comparison. I just want you guys to know there is success, the treatment of these cysts has come a long way.

Date: April 10, 2009

Story

Hello :) Well.. I'm 21 years old, from Bangalore in India. My story starts about 8 months ago. I had the usual noticeable symptoms: Started with the boil. Thought it would go away. Then I noticed the sinus tract under the skin. Got it checked with a regular doc who just lanced it. But it did not solve the problem. Eventually, I started reading up about the problem and made up my mind to visit a great family surgeon who said excision was necessary. But when he mentioned excision I was a little taken aback and after much deliberating decided to go through with it as it was summer holidays and I definitely had the time to let it heal. The procedure was performed last Saturday. It lasted just bout twenty minutes. 3 tracts were found. Approximately a 2” x 1” section of about 1” depth was removed. Surgery was perfect, haven’t felt any pain , even till today. There is mild discomfort at times when I get out of bed or climb out of cars.

Nearly been 7 days now. Getting the wound dressed every day. DO NOT USE HYDROGEN PEROXIDE! Hurts like a @#$%&. I have been eating lots of freshly cooked food and loading up on pulses, soy, eggs, fish and chicken. Importantly I have been on antibiotics, having tablets that give me a good dose of vitamins and supplements especially vitamin C and zinc. Few tips I have for my PS friends out there: 1. Go to a doc if you have the problem, take that first step please. 2. The pictures on the website though useful are graphic and are cases which have been worse. 3. Excision is not as gruesome as it seems. If you have the time on your hands, go for it. 4. Have someone drive you around during treatment. I nearly passed out once when I stepped out of the hospital after a hydrogen peroxide shock induced by a careless nurse 5. You may ask yourself, why YOU!!!. Well, I had it too : )

If anyone needs any info or help in my part of the globe or anywhere I’d be more than glad to. Email me on: kunalpal@mail.com .

Date: April 07, 2009

Story

This story is my husbands really. I'm just the nurse.

Sam has had this ongoing since his teens and is 32 now. He had seen doctors before that just go in and so "oh, well you have a boil" and proceed to do nothing. My husband is a very hairy guy and when this came on it was with a vengeance. We found only on e home remedy that worked and it was just to get the darn things to a head. You cut an onion and take a really thick ring about one and a half inches thick and take the middle core out of it (So you have like an onion donut) and bake it in the oven for about 15 minutes then put it over the spot. It leeches out the poison on the more minor ones. The problem was when they were further down into the "nether regions".

This last time nothing worked. I was out of town for a few days visiting family and Sam, not wanting to ruin my vacation didnt tell me how bad it was. When I got back he was in soooo much pain we took him to the hospital immediately.

It was supposed to be a day procedure but the way the schedule was they couldn't get him into surgery till after hours and its a good thing. The next morning when they were showing me the steps for care, he started bleeding all over the place (he was butterflied open and all the infected area was removed). I was very scared and there was a puddle of blood under him. They had to rush him back into the OR and cauterize some blood vessels. Then his oxygen levels were low when he came out and he had to stay on oxygen all day. Don't get all scared if you are reading this before surgery, it wasn't typical but we found out the hard way he was also anemic.

He is in his second week of recovery right now. Lots of pain pills. The doctor took out the rubber stint yesterday and now I have to go in it with a Qtip and that is a bit more painful. We don't know but maybe he will be back to work in a couple more weeks.

Luckily since we both work together at a restaurant I am able to cover about 50% of his shifts.

I am so glad I found this and will be showing it to the hubby when he wakes up!

Thanks!

Date: April 04, 2009

Story

Hello, My name is Scott a fellow sufferer. The problems for me started about ten or so years ago. I would have flare ups about every two or three years, due to improper posture while sitting, or just leaning the wrong way, or just by sweating. The first time (it) flared up on me, I did the guy thing by ignoring the pain and saying to myself: it will just go away on its own, I don't need to see a doctor..(you know the guy macho crap).

But, as time went by it got worse, i couldn't sit, sleep on my back, or drive my car, or do anything that required a lot of moving. It made my family and me miserable. After about 6 months of pain and torture. I broke down and went to my family physician, she was surprised I waited that long to come in and see her, due to the severity of the cyst. They gave me antibiotics and painkillers on my first visit,which took care of the pain and infection. Until, it reared its ugly head again. I'm not sure why, but it did. So, I went back to my physician and was referred to a surgeon to have it lanced. Which I did, and that only lasted about two years, which I feel is not very long.

The third time (it) came back with a vengeance, and more painful. So, I went back to my doctor again and she referred me to another surgeon, this time to have it totally removed (hooray). The procedure didn't take long at all, about three hours and was done just recently (April 3,2009), if this makes it where (it) and I don't have to come back. I say, if you have the insurance, or no insurance and can afford it...skip having the thing lanced and just have it removed on the first flare up. I wish I would have, it would have saved me and my family the pain and torment of going back and forth to doctors and surgeons offices.

Date: April 02, 2009

Story

Hello fellow sufferers, I’m a 20 year old female who had her first complication about a month ago. After a couple of days of excruciating pain, I went to urgent care to get my cyst diagnosed and dealt with. The doctor said the sinus was draining (maybe a drop? Not really), so he didn’t lance it. I got some antibiotics and a follow-up appointment. The next night, a miracle! I was in my usual position of face down on my bed, and I felt this little trickle. Lo and behold, the sinus was finally draining properly! I would say about half of it drained that night (THANK GOD). What a freaking relief! I continued to take my antibiotics and ibuprophen (I was eating that stuff like candy), and made sure the area stayed clean and nice.

I had a follow up appointment on Friday with a family care doctor, and she referred me to a surgeon. When I went to the surgeon’s office, he looked at the area and said I actually had 3 sinuses (I thought I only had one), and that two of them had already closed. The surgeon said that it probably wouldn’t just go away on its own, but he could do a phenol treatment. Basically, he went in and dug around in the cyst with some tweezer/scissor things and cleaned out all the hair and crap. This started out not really being painful, but eventually it was just like he was stabbing me (which in a way he was..). This pain, however, was NOTHING compared to when the cyst was infected, I was more than willing to get it fixed then and there. After that, he had a nurse come in so he could do the phenol treatment. This time, he used local anesthesia because the phenol burns. He only got a little phenol on some skin that wasn’t numbed, so there was some moderate burning for about a minute then it was all good. After that I got some gauze and went home! This was about 2 weeks ago, and as far as I can tell the sinuses have closed up, and I haven’t had any further complications (cross your fingers)!

I had done A LOT of research on the internet before I went to the doctor, and I’d like to tell anyone who’s reading this that the research REALLY helped me. Getting help from the doctor was much easier when I was able to say, ‘Um yeah I think I have a pilonidal thingy’, and when the surgeon suggested doing a phenol treatment I could ask questions about it. Also, I never had my cyst lanced, and by the sound of it those are pretty traumatic. Cross your fingers for no surgery for me!

I also wanted to write this post because so many of the accounts that I’ve read on sites like this involve horror stories. I decided that if this all worked out for me I would write a nice post and give people some hope. If you had told me when I was in the most pain that I would be pain-free a week later, I wouldn’t have believed you. This was the worst experience of my whole life, but now I’ve lived through it and it will hopefully continue to be ok, without surgery :)

Date: March 28, 2009

Story

For some, an alternative treatment to surgery?

I am a 33 year old male and first noticed the cyst in my early twenties. It flared occasionally (every few months) but I first noticed it draining as open sore about 7 years ago in my late-twenties. This lasted about a year, and at the time the doctor told me to try a salty bath for 2 hours or so every other day for a few weeks. I did not take this advice because I suppose that being a young single guy with a job that had long hours, I did not have time for long baths, and frankly, I thought the doctors treatment seemed a bit irrelevant. Over the past 7 years, my cyst subsided somewhat but unfortunately flared up quite badly and continously in 2005 after I took a nausea-inducing hit in the area while playing sports.

I should note that when I saw a doctor in December 2007, he advised that I had a mild case with just one apparent pocket/opening. I explained that it flared and drained (mostly at night) for about 3 days about twice a month, and at its peak caused trouble for me when sleeping on my back, as the pain seemed spread across my lower back. He thought my case warranted surgery and being mild, would heal fairly well.

Then in Sept 2008, I took a 2 week holiday to Florida and the Caribbean, and for the first time as a working adult, I had 2 weeks off with no sight-seeing agenda. My family and I spent every day in or by the pool or ocean for at least half the day or longer. Shortly after we returned, I noticed that the cyst was flat for the first time since my early twenties. Since then, for the past 8 months, it has not flared up one, with no swelling or drainage, and has remained completely clear. I am careful to wash the area with soap twice a day, though not sure if that makes a difference.

I assume that at some point it may flare up, and also know that not everyone can take time out for a long beach / pool break but in my case, However, I am convinced that as a treatment at least, and thought I would share my experience with, in case it might bring hope to those of us with a milder case?

Best of health to you all

Date: March 25, 2009

Story

I'm 20 and after months was diagnosed. My (army) doctor didn't know what it was and sent me to multiple doctors. I opted for surgery and had the sack removed. I was stiched up afterwards. I am told this is key to it not ripping open again. I wanted to tell my story so that others will consider having the stiched up afterwards as well. It was painful.. very painful. I couldn't sit, stand, walk, lay down, go to the bathroom. Everything hurt and I was desperate to have the stiches removed. After 3 weeks they were and my wound never ripped open. Years later, the only problem I have now is sudden random pain every once in awhile. It's bearable and lasts only seconds.

If you opt to have the surgery. Please make sure you get the stiches. Packing just doesnt seem like a good option to me.

Date: March 24, 2009

Story

I'm a 21 y/o female who had my first flare up in 2003. It started with pain in my rear-end after my horseback riding lessons and progressed slowly for a year until I was constantly draining and couldn't ride for very long at all. One day during class the pain became so intense that my teacher sent me to the nurse (who called my mother). I was taken to my doctor who diagnosed me immediately but took several days to give us a referral to someone who could do something about it. The specialist lanced it, saying it was the worst infection he had seen in his career. I spent the next two weeks laying face down on my couch.

I finally had surgery a week before Christmas. We have photos of me giving my horse her holiday treat with a drainage pouch pinned to my coat. It took me six months before I could get back in the saddle (literally). But I haven't had any problems since!

Date: March 21, 2009

Story

3/21/2009 Hi! I am a 28 year old female who is 34 weeks pregnant and OHHHH do I wish I didn't have to write this story!

My pilonidal cyst reared its ugly head when I was about 17 after a bad fall on an ice rink that resulted in breaking my tail bone. For years I would only have about 1 flare up per year - if that - and it would drain on it's own - no pain, just annoying. Sometimes it would even go dormant for years...

Flash forward to Aug 2008...My husband and I found out we were pregnant and 8 weeks into the pregnancy it flared up worse than I had ever experienced. I couldnt walk, sit, move without screaming and crying in pain (maybe labor will be easier! ha ha). I went to an urgent care doc and she prescribed Cephalexin? (Keflex) for 10 days for the abcess. After excruciating pain for 3 days and living on the couch, it did go away for a while...then reccured again a few months later. In Dec, we went on a 10hr road trip for Christmas which I knew would be a recipe for disaster - sitting for 10 hours...ugh. Of course, it came back again and I decided to try getting it cut and drained in January before it got painful to see if that would help - loved the procedure, in and out, relatively painless except for the shot to numb the area. The doc at the urgent care (who now knows me by name and face) used to be in OB/GYN and also worked as a doc in the army so he had lots of experience with pilonidal cysts. I was HAPPY...

THEN Feb. - I let it get really painful and got it drained - BAD IDEA. The numbing agent only works on the skin not the actual cyst so it was like 20 minutes of pain HELL while the doc squeezed and pressed on it to drain all the puss. Not one of my better moments! It healed after 3 days. Then in early March I caught it early and got it cut again. It healed. Now it's been just 2 weeks since the last incision and drainage and it is ready to be drained again. UGH! It has been reccurring every 4 weeks and now it's down to every 2! I don't know what to do anymore! I have 6 weeks left until I deliver my baby and am just trying to manage it until post-delivery so I can get it removed once and for all - hopefully! I am so glad to know that I am not the only one suffering with this horrid condition. I am guessing the hormones or extra weight from pregnancy are making this worse for me...but who knows! Thanks for reading.

Date: March 21, 2009

Story

I am a 26 year female who just had surgery on Friday March 13th, 2009. When I was 19 and recovering from an appendectomy, (removal of the appendix) my pilonidal cyct ruptured. I went to my dermatologist because I didn't even know what it was at the time. He sent me home telling me that it would heal on it's own. It festered and ruptured monthly with my menstrual cycle. After some research to figure out what I had, I went to my primary care physican to get a referral for a surgeon. Dr. Phan in Waterford, MI performed the surgery successfully, but the aftercare was horrific. The pain medication made me so nauseous I could bairly eat, and calling my surgeon to get something else was a joke. Finally after three days of calling he called in a prescription for hydrocodone which does not have codeine in it. My only discharge instructions were a sitz bath twice a day. He never told me I needed to re-pack the open wound (four inches long, two inches deep, one onch wide.) twice a day, which left the wound irratated and stinky. I demanded that he see me six days post-op because I was affraid it was getting infected. So here I am eight days post-op cleaning my wound (the shower works better than the sitz bath because my wound is so long) and re-packing like a champ! This website helped me SOOO much with different products I need to get. I wish I found it before my surgery. It would have saved me a lot of pain and frustration. Thank you for the information!!!

Date: March 20, 2009

Story

I am 23 years old and have had problems with cysts since I was 15. The first time my parents took me to a doctor he told me that I was allergic to anti-perspirant (it was in my armpit) and that I needed to change to baby powder. We did that for a year until I started getting so sick that I was coughing up blood and losing a bunch of wait. I was rushed to the hospital to find that it was actually a cyst that was getting progressivly worse. 3 days later I had surgery and it hasn't bothered me since. 1 year later I had surgery on my tailbone for the first time, 1 year after that I had another surgery on my other armpit, April 2007 was yet another tailbone surgery with yet another following right after this past september. I'm still healing from the last one as there was complications with some nerves that got slightly damaged. I have been in constant pain for 8 years and I'm really getting sick of it. I've been doing what the doctor has told me, with the cleaning and the hair removal(though i naired like there was no tomorrow and still had a recurrence)I even lost 80lbs. I go to see him again this week and I hope that after all this time there will finally be some sort of good news. I know that this isn't exactly a success story but it's definitly a work in progress. I wish everyone more luck then I have had and just wished to share my story with people that have gone through thi before.

Date: March 19, 2009

Story

I am 26 and was diagnosed with a pilonidal abscess last summer.All i can remember is waking up one morning and not being able to sit properly, i thought nothing of it so left it for a week and gradually the pain got so bad i couldn`t straighten up and had difficulty walking so i went to my doctor who sent me to hospital immediatly to see a surgeon,he gave me two types of antibiotics and told to return if the pain got any worse needless to say i was rushed back to hospital 2 days later. I had surgery and the wound was left to heal from the inside out,i had a nurse come to my house and clean my wound every day for a week then after that i went to my local health centre where the nurses were great and went to great lenghths to make me feel comfortable and not embarrassed.I now think that it has returned as sitting down is getting uncomfortable and i have a pain in the area where the abscess was before,hopefully when i see my GP tomorrow she will tell me that it`s not true and that it`s just a phantom pain and i can relax

Date: March 19, 2009

Story

I am 29 and I have had two surgeries so far to remove a pilonidal abscess. The first time I wasn't sure what was happening, I left it too long before going to see mt GP and again after starting to take antibiotics I left it too long before going back. The GP said "you poor thing", sent me to ER where I waited 12 hours before being operated on. I was crying and got sick from taking too many pain killers, then sat on my side in the ER for ages. The second time went smoother as I knew what was coming as soon as I saw the first bump on my ski. I didn't wait so long before going to see the doctor. Still it had to be surgically removed. I got my third abscess a few days ago and the doc drained it yesterday. It is still a bit sore but I'm not sure whether it's the healing or the abscess re-forming. In any case I'll go and see the doc again tomorrow so he can take a look. I try to use a mirror to see if a head is forming but it's next to impossible to get a good look. Having a partner who can take a look, take pictures etc. definitely helps.

Date: March 14, 2009

Story

I'm 59 and here's a non-surgical remedy that works for me. When a pilonidal cyst erupts, I keep the area clean with rubbing alchohol 3 or more times a day. Purchase a new bottle of echinacea capsules as they usually have a short shelf life. Do not buy the tablets. Take 2 capsules after meals 3 times a day. Do not soak in warm water. You don't want it to come to a head. You want to calm it down.It usually calms the whole situation down in 3-5 days. For a more serious eruption use Ferric sub sulfate (Monsels solution) instead of the rubbing alchohol. Use Monsels solution for no more than 3 days. Good luck......P.S ....Some people have had as many as 4 surgeries without success for this terrible condition.

Date: March 08, 2009

Story

I am a female in my 20's. I was diagnosed with pilonial cysts only a few months ago. My doctor immediately sent me to a surgeon who said that the cysts needed to come out. My surgery was scheduled for a week later. I was put under general anesthesia, and the surgery went fine. The incision was closed with stitches inside and on top. The doctor said everything looked good and I shouldn't need to see him for a week. The only bad thing about the surgery was the anesthesia made me sick and I hurt a lot. About four days post op my site began to hurt really, really bad. I went to an urgent care center (it was Saturday) and they said I had "popped out" the stitches! But only a few of them, so I had a little portion that was open, but nothing to worry about. A few days later I began running a fever and noticed that the wound still hurt really bad and was leaking a lot of fluid. I went to the surgeon who treated me and he said my wound was infected and I had managed to rip it even more. He went back in and removed all the stitches and created an open wound.

I was really disappointed. It has been 4 days since then, and I have to have someone pack the wound twice a day. It still hurts often, and I find it hard to do normal activities. I am hoping for a speedy recovery. Right now I am not sure if the surgery has been worth it...I have had a lot of trouble. Hopefully it will prove to be beneficial.

Date: March 08, 2009

Story

I'm a 16 year old Female who had her first flare up at 13. My mother and I were scared and didn't know what to do so we went to the family doctor who referred me to a surgeon. I went to the consultation and he set the surgery for my spring break from 7th grade, expecting me to be recovered by the time I was to go back to school. I was not, as a matter of fact, I never recovered. He didn't go deep enough to remove the sinus when he performed the surgery and he said he would go in and fix it, however it took a year (364 days between surgeries) for him to realize what was wrong. I couldn't do anything physical because of the pain and it was seriously embarrassing. I put on a lot of weight (I was already overweight) and miserable. The second time I got surgery, he had a drainage tube in that I was to keep in my pocket. That experience traumatized me. I would sob when it was time to take a shower because of this canteen looking thing hanging from my body. Despite both of my surgeries, there have been multiple flare ups since. Some being more intense than others, usually about 1 lancing every 6 months. I am learning to live with this disease, still affected by its symptoms. I'm very glad there is a site like this for people like me who had no clue what was happening to them.

Date: March 07, 2009

Story

HELLO, I am a female who just turned 21 and sadly I have had my third flare up in a year, a week before my birthday. Because i didnt have health insurance i really paid no mind to what was going on and just hoped it would get better. Finally i got insurance and was able to see a doctor who finally diagnosed my Pilonidal Cyst after having it lanced three times. My doctor has finally given me a referal to a surgeon also that i will see in two days and hopefully have an answer and a good outcome to this problem. Im very afriad of emergency rooms and surgery so this will be a tough time for me but with the support from my boyfriend and family i know i can take care of this problem. so i can continue my life the way it was going. This website has helped so much although most of the stories and pics give me the "willies" i know i want to move on from this time. So thanks to All of you who post on the forums it really has helped calm me down alot. Good luck to all those with this problem like myself i hope we all have a speedy recovery

Date: March 05, 2009

Story

I saw your page regarding exfoliation and noted that nobody had reported having tried this in "that area". Well, here's that report.

When I was about ten years old I developed a pilonidal cyst (trauma-induced, I remember the specific incident) and after many years of trying to live with it finally gave in and had it removed surgically while in college. The doctor recommended periodic shaving.

I wound up trying the electrolysis method. It took a while to find someone who would do it, but finally did. It required about 4-5 treatments but it worked fine. Now I'm 41 and have had zero problems since that day - I have not had to take any steps related to that condition since then, it's just like it had never happened.

Your mileage may vary, of course, but I couldn't be happier with the result. In case you're wondering why I'm even posting here, someone else in my family does deal with this condition and I was doing a little research on the latest methods, it's been awhile.

Date: March 04, 2009

Story

Hi , my name is Andy and I am from Romania . My first surgery was in the summer of 2008 and it was a abscess. It didn't healed proper as the doctor didn't advise me well . I healed the open wound alone , with no doctor advise and the infection got back so , from summer 2008 , till February 2009 I lived with my pilonidal disease , with daily baths and straps around the sinus that was leaking , very poor but leaking . In February 2009 I had a 2 week vacation from school and found me a better surgeon at a local hospital here in Constanta , Romania . I was operated with the diagnosis of pilonidal cyist without an abscess (as there was a sinus*hole there that was always leaking the infection out) .

I want to say , this site was gold because no other site presents this awful , anti-social disease as well as you do . I have a closed operation and removed my stitches on 2nd march . now my wound seems to heel very good but I am scared to sit down .

My advice for the ones who suffer for this disease is : Go for surgery and alocate at least 2-4 weeks for healing depending in most cases how fat you ar , as the healing is slower for the fat ones (my case) because of the fat in your tissue .

That`s my story and I promise , when i heal the wound I will be an active member of this site .

Thank you all for the advices , pre on post operation . Very good structured site , very good quality people around it . Thank you again AMERICA people for the support that in my country I couldn't find .

Date: March 04, 2009

Story

I'm a 38yr old male, I had been dealing with PL for approx 10 yrs, when it would flare up to the point where I couldn't stand it anymore, would go and see a doc, the first one thought it was just a boil and lanced it, had small flare ups, 2nd doc thought it was a staph infection, heavy dose of antibiotic and was good to go, the last time it really felt as if an alien was going to burst from between my cheeks. Shuffled in to see DOC,dropped my drawers. The first thing out of his mouth was you have a Pilonidal cyst. He lanced and packed it apologizing the entire time for the pain and all I could do was tell him he needed handles on the bed to get a better grip. 5 days later, a great young lady gave me some I'll follow you off a cliff drugs and an hour later I was up in recovery. The cyst was approximately the size a peach. I have an open wound that is healing nicely, according to the doc's, By the time I'm through I think the entire staff will have a good look at my asset. Weekly check ups and my wife has gotten an A+ in packing it for me. I just can not get the hang of packing it myself using a mirror.

Work has been very understanding, the pain in the ass jokes slowing down after 3 weeks, and dress code infractions forgiven. Sweat pants are the only thing that was comfortable for the first 2 weeks after the procedure. The doctors have recommended that I remove the hair from my buttocks as a precaution for future.

I have found that many more individuals have and do suffer from this painful condition than I had previously thought. This site was and is valuable resource for individuals to inform themselves and ask the correct questions to their caregivers.