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Date: September 28, 2008
Story My name is Ken and I've been in the United States Air Force for going on nine and a half years now. I first noticed I had a lump around my tailbone right before I joined the service when I was 18. It didn't hurt or anything so I really didn't pay it much attention. I was stationed in Okinawa Japan for my first three years after training and then moved to Edwards AFB, CA.
After being in CA for 3 years I noticed that there was a small hole in the cleft of my behind when I was taking a shower one day. It kinda scared me but I don't like to go to the hospital or to the doctor so I put it off. About 4 months after I noticed the hole the lump really started hurting. I made a doctors appt on base but they couldn't get me in for 4 days. After 2 days of
excruciating pain I began to develop a fever. I called the doc and they were able to get me in that day. By the time the doc saw me I was running a fever of 104 and climbing and I could barely walk. They actually rushed me 30 miles to the nearest emergency room for surgery. And so began my journey with Pilonidal Cysts.
I was admitted to the hospital and stayed there for about 10 days while they ran tests for cancer and everything under the sun. They then told me that I only had an
abscess probably from some infection that I picked up somewhere. All they ended up doing was opening it up and draining it. It was left open with gauze taped over and took about 6 weeks to close. About 2 weeks after it closed it started to hurt again and had another lump that was red and warm to the touch. I went to the ER and they admitted me once again for the same thing. They had me hooked up to an anti-biotic IV for 10 days and off I went again. I would go through this 2 more times until the doctor figured out that there was a cysts down there causing all the problems. He scheduled me for yet another surgery and exsized a larger area and said that he totally removed the cyst. i believed him until Sep 2008.
After about a year and a half relatively pain free, I began feeling some pain and smelled something funny down there. I also began noticing a few more holes in the cleft of my behind. I made an appt with my doctor and they referred me to a general surgeon. I saw the surgeon and he said that I had to get into surgery ASAP. He told me that there were 3 sinus tracts and more than likely that there were 1 or more cysts still in there. I was scheduled to move in a few weeks for a new duty station so I had to wait a couple of weeks for the surgery so I could change my orders. I went and had the surgery and spent another 6 days in the hospital. This time the surgeon told me that he removed all the tracts and the cyst. This is my worst open wound yet and it's 4 inches long by 3 inches wide and 2 inches deep. It is also tunneled under the left side. I also might have to go back to a plastic surgeon in a few weeks for a graft or flap procedure to minimize the scar tissue. I am recovering now and hopefully this will be my last bout with this disease.
When I was going through my first 5 surgeries I was in the beginning stages of a divorce and was preparing to move from Cali to Mississippi. Going through the surgeries, the move and the divorce all at once was hell. I was an emotional wreck and thought nothing would ever go right. My 5th surgery didn't fully heal until a month after I was deployed to the Middle East. Everything was going great after that. I met the woman who is to be my wife in a couple of months and I got orders to move from Mississippi to Texas. Then my
fiancée got deployment orders and about 2 weeks before she left we found out that I needed the 6th surgery. There was no way she could get out of her deployment so she was very worried for me and upset that she wouldn't be there to support me through this. I went in for surgery about a week after she got to Iraq. I'm hoping I'll be fully recovered by the time she returns in Jan. Well that has been my personal hell caused by pilonidal cyst disease and hopefully this will be the last chapter in this story. I feel for everyone out there that has to go through this or has gone through this. It is comforting to know that there are people who have made full recoveries from this with no further reoccurances. Good luck to all who are dealing with this.
Date: September 27, 2008
StoryAdam-UK-18
I believe that I first had the condition around the age of 15. I first discovered it while washing in the shower. It was not painful to begin with and treated it as an elaborate spot with creams and cleaning etc. It was a single solitary 'hole' and you could feel how it rose up and went inside my body. I only really became concerned with it when it became bloody itchy and it started to discharge. It made a right bloody mess and ruined plenty of very good sets of calvin klein! Anyway I finally plucked up the courage to see a doctor ( which I should have done much earlier) and within two weeks had it removed.
I am currently in the second week of healing. It is an open wound. The pain is irritating, but bearable. I continue as much as possible with normal life and am much happier now that it has gone. If you are considering having it removed, do. Don't bear with the unnecessary anguish of having to live with the sinus, cyst or abscess. Have it removed. You may see some awful pictures on the net, but they are extreme cases. I was under morphine so didn't feel a thing. I still haven't even looked at mine. The aftercare can be as easy or terrible as you make it!
Date: September 26, 2008
StorySo, I'm a 19 year old guy who found out he had a pilonidal cyst maybe 3 years ago. I really had no clue what it was, but I noticed I had maybe two pin-sized holes around my crack. It never hurt or anything, and actually rarely drained, so I thought nothing of it. Well, after my 19th birthday, an
abscess that drains through the pin-sized holes formed, and after doing more research on this site, I realized that my whole thing is getting worse. It hurts every now and then. I can't lie on my back without it hurting, so I primarily sleep on my stomach now. I'm trying to sit properly, but most of the times I forget. After reading more into this, and reading some stories and testimonials, I've decided that I'm going to a doctor about it. I'm currently in my fourth semester, and I know if I go in and get surgery or whatever (I'll be referencing this site more), it'll kill my chances to get my associates degree. So, I'm going to try and tough it out and get my degree, then seek immediate medical attention. I just want to thank the people who made this site, because my God... I wouldn't have gotten the balls to decide to seek medical attention without ya'll.
- St.
Date: September 25, 2008
StoryA POSITIVE STORY -
20 year old male here, from New York, and - well, this site terrified me for a long time, I have to say. I had the typical story of discovering a bump that I was quite curious about, but didn't worry too much about it...
I honestly can't even say how long it's been there - at least since late '07... I became concerned when I was doing some traveling for work - I was flying to Florida from New York, and after sitting for 3 hours or so on the flight I got up, and I was like... "what the hell is this f'**kin thing?"
Still, didn't think much of it, it was a little red, then it went away...
Now, April '08, flight to Mexico - same thing... Having discomfort sitting with correct posture in chairs - so I pull the "one-cheeker"
So I lean over and check it out in the mirror, and it's a bit red, two little pinhole sized dots were the most red in the "midline," and now I was concerned...
So, I google "tailbone cyst," and this site comes up.
Now I'm all f**ked up. People posting friggin' softball-sized open wounds and drains and horror stories and infections and, UGH. I was absolutely terrified, I'm thinking, what am I gonna do about work, about school - I can't be down for 8 weeks, etc, etc etc.
So now, it's hurtin' a bit, but not too bad. I've got an infection - I notice when I lay on my back in my bed, I figure something's wrong...
I go to the pediatrician, get 10 days worth of Augmentin, some hot compresses, and schedule an appointment for a surgeon in mid-July. The infection was gone...
So I'm dreading this goddamned appointment like you can't believe... I'm being EXTREMELY diligent keeping clean. I go to the gym every day, so I bring baby wipes in a zip-lock to clean after I work out, I'm showering twice a day, and I'm doing "okay."
I go to a fantastic surgeon here on Staten Island, who says it's not a "true cyst," yet, luckily - it's most likely a hair follicle, but two sinus' have formed in the midline.
He said he can go in there, remove the follicle and the sinus', and stitch it up as long as its not infected - but if I come back to him with a big hot red lump, then we have to open it and the healing is more difficult, as it doesn't heal so long as its infected...
So he said, when I'm ready - come back and we'll schedule surgery.
So, being the pussy that I am, I said - I'll keep it clean, avoid the surgery, etc.
A week later I get another infection - I race to the doctor for s'more antibiotics RIGHT away, and I schedule the surgery for Sept. 10th... I said, I'm not gonna let this get any worse -
So I did it, and to tell you the truth, it's not THAT BAD. I got closed up, was really sore and uncomfortable for a few days, and have really just been laying low. I took three weeks off of work to now screw around...
My surgeon said, "be extremely careful, you open this thing up - I can't close it, so don't screw around."
That's enough for me to lay low and watch movies all day... Granted, I had to take a semester off of school, which sucks. But I'd rather take care of it before it comes a MUCH BIGGER PROBLEM.
I'm two weeks in as of yesterday, and the doc said I'm healing up nicely, all the stiches are weaving, etc. I'm able to sit down a bit more now, it's sore, but it could be much, much worse...
Tylenol with codine made me sick as a dog, so I was taking 4 advils every 6 hours or so - and the pain was tolerable... I only took 'em for the first 10 days, now it's just like a headache in my ass.
So, my recommendation, if you see this site, read these horror stories - take it as a hint to GO TO THE DOCTOR RIGHT AWAY. Take care of it because it gets worse, unfortunately, it's not going to get better on your own. GET IT OUT BEFORE IT GETS TOO BAD. I'll be ready to go back to being normal in a week and a half or so...
My younger cousin, unfortunately, didn't know what the hell this thing was, got a NASTY infection, throwin' up - etc, lanced, nasty. He went for surgery the other day and they pulled out TWO SOFTBALL SIZED cysts...
So just, GO TO THE DOCTOR RIGHT AWAY. That's all I can say -
:)
Date: September 23, 2008
StoryHi I'm a 24 year old female. I just had a pilondial cyst removed on Sept 12th. Here is a little background of my situation.. Since I was a teenager I have been getting boils around my groin area(mostly around the time of my period) My doctor has tried antibotics, cream and nothing seems to help. I have also had two cysts lanced from under my armpit. For the last couple of months I have had the bump on the top of my butt. Sometimes I would sit down and it would hurt so bad I had to jump back up. I have also had a couple of flare ups in this time..It started to get annoying so I went to the doctor just expecting her to lance it and send me on my way. She tells me that I need to go see a surgeon but didn't explain anything to me. I thought this was very wierd.
So anyways I make an appointment with the surgeon and he tells me what it is right away and sets me up for the appointment that friday. It couldn't have come in a worst time because we are starting mandatory training for a new system at work. I also just want to get rid of this thing. So I go in Sept 12th and go in for surgery. When I wake up I'm in the recovery room face up. I guess it didn't hurt because I was all doped up.. The first thing I did when I got home was go look at it in the mirror. I have an open wound so it was packed with gauze and a clear tape thing was over it. The first few days were horrible because I couldn't sit and when I was in the car every bump hurt. I go over my mothers house everyday so she can change my packing. The first time it fell out was Tues 16th. Well my mom didn't moisten the gauze and try to stuff way more than she could into the wound.. I was swearing at her and yelling. It hurt so bad that I was like leave it and I had a tail from the gauze..GREAT!!
So now everyway I move it hurts. So I found this stuff at walgreens called WOUND SALINE SOLUTION(HIGHLY RECOMMENDED)and she wets the gauze with that and then puts it in. Its now Sept 23rd and I still haven't dove yet, I can sit down but not for long periods of times and I actually changed my gauze myself today.. I'm feeling 100 times better but my doctor doesn't want me to go back to work until he atleast sees me on the 29th.. In a way I guess its better because I have been wearing sweat pants since the 12th and work pants and jeans are to uncomfortable right now. I also recommed getting surgical pads to put in your underwear because when the gauze is wet you get a wet spot on your butt which my mother thinks is really funny but if you just lay the surgical pad in your under it gives you a little more cushion and you won't leak through your pants..
Date: September 23, 2008
StoryHello. I am a 27 year old female. I had a pilonial cyst removed about 13 years ago at the age of 14. I don't really remember a lot of what went on back then, only that I was always complaining to my mom that my lower back was always in pain. For about a year she just figured that my back pain was the result of menstral cramps until I discovered a little hole at the top of my butt crack that was leaking pus. She took my to the doc who refered me to a surgeon. I was put through xrays and MRI's and told that I had a pilonial cyst. I remember my mom telling me that it was a growth at the base of my spine and that I was going to have it removed before it could cause any problems.
Wow!!!, we really didn't know what we were in for. First of all, I don't remember ever having any outside symptoms other then the sinus track. The surgeon explained to us (me and my mom) that the procedure would take about 30 to 45 minutes and the incision would be about 4 inches long. "Not a big deal", he said. So you can imagine my parents worry when almost 3 hours later I was finally out of surgery. The doc explained that things were much worse than he could have ever thought. The little cyst that he was expecting was actually a horribally inflamed cyst the size of his fist. And to make matters worse, he had to remove an incredible amount of tissue around the cyst because... well, he described it like little branches growing their way out into the healthy tissue around the cyst. So the procedure that was not a big deal had turned into a 15 inch incision that is in a kind of half moon shape on my left buttock. On top of that he had to put in three drains to drain the fluid that would accumulate in the empty space he had created. 2 of them looked like hand grenades with a flip-top opening so I could empty and measure the fluid that was being suctioned by the drains. And the third was closer to the bottom of my bum that emptied into the enormous diaper-like sea of gauze and tape I had to wear. I had this surgery in December of my freshman year of highschool and was able to get the drains taken out sometime around the end of March. But still had a dressing and had to be very careful with myself for several months after. Lets just say I was the only person I knew whos best friend was a blue doughnut pillow, lol. Needless to say it was a nightmare!! Fastforward to present day, I still have pain in my tailbone and lower back area. It's only gotten unbearable in the past 6 or 8 months. So I'm going later on this week to talk to my doctor about the possibility of reaccurance.
Date: September 17, 2008
Story(3/28/2008-8/17/2008)
Well I am a 17 year old girl going into my senior year in high school. I currently live in a group home and have been for a full year now. I have been to two group homes. The first one was in the summer of '07 witch I got to in late august.
Everything was fine when I got there. I was 16 at the time and liked to go for walks, amusement parks, swimming, and all of the other teenage things. I had never had surgery before and I was planning on keeping it that way until I became an organ downer, aside from one day getting rid of my wisdom teeth.
Then in late September, early October, I started to get pain in my tail bone area. I wasn't worried about it yet though. So when I took a shower, a few days after the pain started, I decided to feel it. So I touched it with my fingers. There was a bump, and being a teenager I thought it maybe had just been acne or something.
after a few more days I looked at it in the mirror and I could see a bump, and sill thinking it was just on really big/bad/blemish I tried to pop it, witch made it hurt even worse.
like I said I was in a group home so there was a nurse there, but I didn't think to tell her about this weird thing on my tail bone because when I tell people things that are medical they don't always believe me because I worry a lot about things so they thought I was a little bit of a hypochondriac.
About a month latter I was out with my mom getting my hair cut and highlighted. When the stylist sat me at the hair heater, the things that look like a helmet with holes, it started to hurt really bad. My mom is a doctor and so she started asking questions. Eventually she told me I may have a Pilonidal Cyst. Then she explained it to me. So she told the nurse to look at it.
When the nurse finally looked at it had already burst and the bruising had gone away. However she did think she saw a small hole for draining. So all I could do was hope it never came back.
Then very early in January of '08 it came back. This time I told the nurse ASAP. Then a doctor looked at it and prescribed 870mg of Augmentin to get rid of it witch worked.
So then I was brought to a new group home, one with more freedom. So my mom took me to a surgeon at Shady Grove hospital.
On March 28th, 2008 I had surgery to remove my cyst. I thought everything was fine, until the surgeon, one who is apparently a much respected surgeon, took out the stitch (he only did one long stitch going all the way down) the whole thing was on big open wound. Witch he didn't tell us had a 30%-40% chance of happening until it happened. and as if that wasn't bad enough he made the cut on the crack witch he shouldn't have done as well as the fact that he made two cuts and then made them one big cut so really there was no way for it to close.
So then I faced four months with an open wound that had a tunnel at the top going under the skin that wasn't open. So for those four months there was skin that grew over then ripped open then grew over then ripped open. I had to go to the wound care center after that were they had me pack, or stuff the tunnel, witch someone had to help me with, and then have the rest covered with gauze and taped. Before all of this it had to be flushed with saline (salt water) and then the next day take a shower and do it again. Then again the next day. I had to base my showers around when my wound care instead of the other way around.
4 months passed and we finally found a doctor to do a different surgery to fix it. So 4 and a half months latter, on August 8th, 2008, I had the surgery. Well now it has been a week and 2 days since the surgery. Last night the entire thing ripped open again. It’s almost like there’s no hope for it closing for good.
so this is all very hard for me and it caused very many emotional problems and my dad when I cried at a doctors appointment before we found our second surgeon called my mom and said he didn't know what to do when I get like this and he just didn't get it. I am so sick of hearing doctors telling me "I don't know why this is happening" or "I'm not sure what to do" or "ill see you next week and see how it looks and then maybe well have a better idea" or anything like that. I am so sick of it. I want answers and I want to know what to do.
Like I said in the beginning there are very many things I enjoy doing, but because of the wound I cant. I couldn't/cant go to the pool, or on walks, and I missed out on one of the biggest outings at the group home...going to six flags. So instead I have spent a majority of the summer inside doing nothing. I just want answers.
(8/17/2008-8/26/2008)
So now that you’re all caught up on what’s brought me to this point in my overly extensive road to recovery, we can begin.
Last week my mom had an appointment set up for me at the infectious disease doctor. My dad took me to it after a different appointment at the new school I am supposed to go to. She did a culture of it and gave me prescriptions for two antibiotics. One of them I take two times a day and the other I take three times a day. She thought it looked infected but we won’t know for sure until the 28th at the earliest, and the 31st of this month at the most. Although they think I don’t have MRSA, the non reactant staff infection that’s hard to treat and could kill you, they think the bacterium that contains it may be colonizing / colonized inside of the wound. So even though it may not be there it still feels scary.
Luckily for me the girl at my current group home who is my room mate is wonderful. She is very understanding and helpful. She asks me questions about how I’m doing and how doctor appointments go. She also doesn’t tell me how I have to be strong about it and how if I think positively it will react positively. I can’t stand that. I thought positively for 5 months and it hasn’t helped any. It just makes me feel worse when I think that way and it doesn’t get any better.
I am now at home with my mom for a wile. She is the only one doing the dressing changes now because she is the only one who can. Since the dressing changes need to be done four times per day I can go to school either so someone is going to be sent to my house to teach me six hours a week witch just isn’t enough for me to stay on the same level as everyone ells in my classes will be when I go to school.
Today I had an appointment with the doctor that did the 2nd operation. He told me he thinks a wound vacuum would be the best solution. He also said he thinks it’s getting smaller. I told him that I think that may be more because it’s puffy and irritated from my mom packing it so much compare to what it’s been used to. The doctor agreed that it is possible; however I hope that the reason is not irritation. I really want this to close and I hope all of this ends soon and that I get better so I can do all the things I love doing. This stuff is just so much.
(8/26/2008-8/29/2008)
I am still at my moms now. The pain happens less often and when it happens it doesn’t always hurt that bad anymore. The wound vacuum nurse is coming later today to install the vacuum. I also herd from the infectious disease doctor and they said my swab didn’t grow anything witch means its not infected witch is great news.
My mom has been very helpful with the care of the wound. Last night she actually forgot. Other than that she’s been doing a really good job. My mom says it looks like its getting smaller. The only thing that’s not very good right now is that the skin around the wound. It’s not the skin near the opening, but the skin around that skin. There has been so much tape being put on and then taken off of me that it is irritated. When I took the dressing off last night I noticed my mom put three pieces of tape on. I took the first two off with no problem along with the first half of the third. When I took off the second half of the third piece off, some of my skin came off too. It was only on layer of it so it wasn’t much; however it was enough to worry me. It’s the next morning and I am fine but I’m worried about more tape being there witch it is now.
I have also developed a very small yeast infection.
My mom who is a doctor has instructed me to eat yogurt witch I don’t mind because I love yogurt. There is not as much discomfort as there used to be witch I am assuming is good news.
When I went by the group home recently the girls seemed very happy to see me. The person who seemed the happiest to see me was Rebecca. Of coerce my room mate was working. I went over there to pick up meds and my iPod dock. It was nice to see the girls that were there. They seem to really want me to come back.
Well hopefully this whole thing will be over soon and I wont have to deal with it anymore, and neither will anyone ells.
(UPDATES ON WOUND VAC SINCE IT GOT HERE)
3:15 8/29/08 – The wound vacuum was put on by a nurse
9:30 8/29/08 – The wound vacuum would not stop making a beeping noise that was made to alert me there was a blockage problem
10:45 8/29/08 – The wound vacuum was removed and I now have the dressing on witch includes a part of the tube making it look like a tail
Letter it was put back on.
(8/29/2008-9/17/2008)
The wound vacuum worked! It was amazing. It reduced the size of the wound very fast and it was just a matter of time before the entire thing was almost completely healed.
Tuesday September 16th, 2008 I had my third, and hopefully my final, surgery to close my wound. I was very scared. At first I was scared because I was afraid that my IV would hurt a lout. The last surgery I had the IV was very painful, to the point were I was shaking for a moment and after the surgery my vain was hard as a rock and gray from the point of entry all the way to 3/4ths of the way up my forearm. The anesthesiologist put two kinds of gel that numbed the back of my hand and then a very small needle to numb it from the inside. When she put in the IV I didn’t even feel any pressure at all. The thing that I guess louts of people don’t know is that with a mask and then an IV you risk the chance of possibly needing medicine by IV to save your life. For example if you couldn’t breath and they needed to pump medicine into you threw an IV to wake you up, the time they lose setting up the IV to give you those meds could be the difference between coming out ok and coming out with brain damage that could impact the rest of your life. The chance is small, but it was a chance my mom and dad didn’t want me to take.
Anyway the surgery went fine. It’s actually not hurting and I feel ok. I just have to hope and pry that it works. And I think it will.
I have started school, witch happened before the surgery, and I am doing well there. I have one A and the other A turned into a B but that’s because there was something that everyone ells did before I got started at school that I am going to try and make up as soon as I get back to school. All my other classes I am doing my best to do well in, and I feel like so far I am. So far I haven’t made any friends at school but I have my boyfriend Dylan and my roommate Tracey. So now we sit and we wait to see what comes of the surgery. On Friday I will be going to see my surgeon, DR. Carry Brown who is a wonderful surgeon! Then on Monday I will be going back to school on the condition that I am doing well. wana know any thing els? i may be 17 but iv learned alout over the past 6 months. or for just someone to talk to who has goan threw something simpler...
weres my e-mail:
homeskillet16@gmail.com
make the subject: "cyst"
or something like it
Date: September 17, 2008
Storyhello fellow sufferers
im 22 year old guy and first got this condition in november last year when it flared up really bad lots of blood etc etc, my gp gave me some anti bitotics and refered me to the hospital and sent me on my way. within 2 weeks it had cleared up and could sit down fine again. the hosptal appointment came through and i chose not to go, me being stupid thinking it had all been sorted with the anti bitotics.
in febuary 2008 to my despair one day i felt the dredded lump appear again. went straight back to my gp and got more anti biotics. this time these did not work and it was constantly uncomfortable to sit (which sucks as i have a office job).
i went to hospital and the surgeon told me he was going to cut it out and close it up. after a couple months more of frustrating waiting for the surgery i had it done, and went back to work after 2 weeks( maybe a bit to soon?). it seemed not to get any better and from looking in a mirror could see anther hole which as u can imagin was gutting. went back for my follow up to the surgeon and he conrfirmed there was a few more holes in there and told me he would get me in for surgery again and leave it open. the frustrating thing was this was in may and i had a holiday booked for the end of june(booked b4 this all happened) and wasent wiling to give that up, so i grined and bared it and got on with it, got back from holiday and was given a operation date in mid august.
i have had that surgery now, turns out it was a different surgeon that done it and done a different type of procedure but still closing it up. part of the wound broke down and got infected. now the top half of my wound has healed quite well but the bottom bit that broke down is still not healed and still bleeding ( having the nurse look at it every few days). due to go back to the surgeon next week for him to have a look, have been off for 5 weeks now and seems to be taking for ever to heal.
i really pray that it all goes well and heals, iwould give anything! it really makes u realise how lucky you are until u get this condition.
good luck everyone
Date: September 17, 2008
Story*********MY SINUS COMPLETELY HEALED, HERE'S HOW***********
Hi, I wanted to share my experience with a pilonidal sinus. A few months ago I developed a pilonidal sinus. I began to read all the info I could attain regarding the care and treatment of it. I saw my PCP & began a ten day course of oral anti-biotics, along with this, I began a daily routine of (after showering) drying the area thoroughly, cleaning with peroxide & then drying again. Then applying Porter's Liniment Salve to the area with a band-aid covering the entire affected area. I finished the anti-biotics & continued with the rest of the routine, about 5 days after finishing the anti-biotics the sinus has completely closed & healed. The salve worked amazingly well, it is not expensive, it does not smell the greatest, but it works like a charm!!!
It can be purchased online. Here is a link I found to buy it:
http://www.drugsdepot.com/viewitem.php/drugsdepot/pd701144/PORTER_S_LINIMENT_SALVE_2.25_OZ
Date: September 17, 2008
StoryHey Guys!....man arent we lucky!...I lived with a pilonidal cyst (not even knowing what one was) for 3 years between the ages of 22-25 thinking it would "go away" and it was "probably nothing"...it was an open hole at the top of my crack that just gradually got worse and worse and worse...in january 2008 it was just draining the worst foul odor, so embarrassing, i was scared to even get close with my girlfriend because it was so foul, so i finally decided to go to my family doctor and he told me i needed to see a butt doctor right away, when i arrived (and after the most humilliating expieriences of random people opening my crack and inspecting) he told me i had a cyst (one of the worst hes seen) and needed surgery right away...i got surgery which went great, didnt feel a thing, it was closed surgery and it took 6 weeks to fully recover and i was feeling great, then in july, mr. cyst pops back up and i am currently about to go see my surgeon later this week to dtermine how long i can go before getting my second surgery....one huge headache but only a few of us can be so close to our cracks i guess..ill keep everyone posted on what he says but its a different hole this time and im just anticipating the foul drainage any day now...
Date: September 16, 2008
StoryHi fellow sufferers!
I'm a 23 year old male living in Dublin, Ireland.
I've have my pilonidal for the past 3 and half months.
Many months ago I noticed I had a tiny lump in the "area" but thought nothing of it as it seemed to disappear after couple of days. Only now do I realise what it was!!!
The first time I knew something really wasn't right was around the beginning of June. I remember it was a Friday and I found it a little painful when sitting down and trying to stand up. Gradually over the weekend it got considerably worse and more painful. Needless to say, first thing Monday morning I was straight down to my doctor. I described the pain and he checked me out. He thought I had pulled a ligament or muscle so prescribed me some anti-inflammatories. These did nothing to ease the pain. The next day I bought some heat packs to help and they indeed helped if only for a couple of hours. At this stage i wasn't sleeping well if even at all, found it EXTREMELY painful trying to get out of bed and even stand up. It was the sort of pain where you laugh so you don't cry! I found the pain subsided when I lay flat on my back but once it came time to move........man oh man did it suck BIG TIME.
The following evening (Wednesday) was when the shock set in. The end of my t-shirt felt damp so when I reached around to check what was going on I felt the mother of all lumps!
I was well freaked out and a little scared I gotta say. The morning I took the most painful 10 minute car journey of my life back to my doctor. Within 2 seconds of looking he knew then it was an abscess and sent me straight to the emergency room.
After seeing the triage nurse it was another 90 minutes or so before I was seen by a doctor. The smell of the pus at this stage was awful. He gave me some anestectic and proceeded to lance the abscess. This was without doubt the worst experience of my life bar none. When it was all said and done I felt so much relief and the pain was more or less gone. He made an appointment for me to see a surgeon who would decide if surgery was required or not. I got my prescription for antibiotics and pain meds and went home.
The first wound packing the next was very very painful but the got easier as the days past. Each nurse that dressed it said the incision was too small so it was not going to heal correctly.
I gotta say right now that each nurse I had was fantastic, kind and a general delight to be in the company of. Roughly weeks after the lancing I went in for sugery as the wound was not healing correctly.
I arrived as the hospital around 7.30 a.m. and by 8 I was in my gown and giving the once over by the doc before surgery. I proceeded to the operation theatre at which point I was surrounded by about 8 doctors & nurses. Each having a look at the "area" and also explaining to me what was going to happen. I wasn't really nervous which was surprising. The put the mask on me and next thing I know I awake on my side in a room with loads of people. The poor guy next to me was screaming in pain and begging for more morphine! After about an hour of morphine injections and blood pressure taking I was moved back to the ward to recover. My nurse had noticed the word 'marsupalisation' on my chart but she didn't know what the was so had the surgeon in to explain. He said the abscess was larger than they thought so marsupaisation was needed to assist with the healing. I noticed my first wound dressing after the surgery was not really painful. This was a big surprise considering the first wound dressing after the lancing was awful.
Today is September 16th and its been about 2 months since the surgery. My wound is still healing and I am still requiring daily dressings. I've been to the hospital 3 times since the operation and have another visit due this Monday. THe incision was about 3.5 inches in length after surgery. The top and bottom have healed but there is about 2cm x 1cm left to heal. My nurse thinks maybe another week or two before its fully healed. I've been out of work since the beginning of June as the doctor/nurses told me I should not return to work until it has fully healed. I have a desk job and work from 8-10 hours a day. As you can understand this would not be ideal conditions for my wound to heal. I get the impression my bosses in work think I have a sore back and had a little operation. Basically they think I'm taking the piss! I'm going to direct them to this site so they can fully understand what it is I have. The surgeon told me there was a 50% chance it would return so once it has fully healed I look forward to the "its back" panic stage to set in.
I think this site is excellent as its provided me with more information and insight than my doctors or nurses could provided.
Keep up the good work and good luck to all my fellows sufferers with this miserable disease :o)
Date: September 15, 2008
StoryI am a 21 year old girl from Lexington Kentucky and I have had a pilonidal cyst for 3 years. I remember always complaining about my tailbone hurting since middle school and affter having x-rays taken, thinking it was cracked or even broken, there was nothinig found it was dismissed. In '05, all in about 3 days, I know had a fever of 103.5, was extreamly sick and a bump on my bottom spine the size of a golf ball. The pain was so severe it made me vomit frequently which put even more stain on the cyst. i went to the doctor and they told me what it was and it wasnt ready to lance so I had to wait 2 more days. that lancing was by far the worst pain I have ever been in. The doctor told me numbing medicine would not help and I had to just hold on. It was the first time my mother had ever heard me cuss, and it wasnt a couple of words, it was everything in the book at the top of my lungs with tears streaming down my face and passed out from the pain. The smell and felling running down my body didnt helpmuch either. The doctors packed the woud with 1 foot of gause hat I had to pull out an inch at a time everyday. i was out of work for a two weeks.
Almost a year later it came back and I had to do all of the above a second time. As far as the surgery, i was directed to wait as long as I could being told the healing process is usually 6-9 weeks and being only 21 in
America, with bad insurance and a not benifit friendly job the time off woluld be impossible.
It has since came back but not in the same severity as before and has been controlled by A.B.s. In reading all the stories and researching the problem my doctors reasoning is very different. i was told it was caused at birth from the bottom spine not fully developing and leaving a gap between my spine and tailbone leading to tissuse to develop instead, making it prone to infection.
This is something that can be embarrising and very hard to cope with. It has caused me emotional and obviously physical distress and has also hurt me in my job and relationships. When asked about my scar I just say surgery ad change the subject. Thiis website has given me hope and shown me Im not the only one out there and its ok. thanks
Date: September 13, 2008
StoryHey everyone, I'm a 21 year old male from California and just had closed wound surgery on Wednesday. Pretty simple procedure (or so i was told) i was knocked out on general anesthesia during it. I was prescribed vicodin and really only needed it up until yesterday. I have like 3 stitches and my ass cheeks seem to be stuck together with some sort of medical glue/adhesive. I can walk around the house just fine, and can also sit upright for a little while before everything starts to hurt. Im on a six day antibiotics and have to go back to the doctor 2 weeks from last Wednesday, where i guess he will remove the stitches and let me know whats going on with me. He does the closed wound surgery only and says that there is a 50/50 chance of it becoming infected, but if it doesn't its like only a 2-4 week recovery process. In his last 16 surgeries only one has become infected. Im bored as hell and have watched so much tv and so many movies in the last few days and have also been tobacco free. So as annoying as the cyst and the surgery is, good will come from it, be patient. Good luck to all, i will report back after my appointment with the doctor.
Date: September 11, 2008
StoryHello! I'm the 26 year old female from Georgia that left the super long story a few weeks ago. I finally have an appointment with a surgeon tomorrow. Yay! I'm really looking forward to an expert opinion from someone who has performed many pilonidal excisions. I have so many questions for before and after I have my cyst excised, if we both come to the conclusion that having the cyst removed would be the best course of action. Really, I have not had much pain since my last round of antibiotics and my drain seems to have closed up pretty well and there has not been much inflamation at the drain site at all in the past week. I have also invested in the tush-cush which helps with the discomfort of sitting. I have no bump at the moment, which hopefully means that my cyst is very small. But, at this point of monthly discomfort and the occassional lancing over the past almost two years, I just want this thing out of me and to be over with for good...before I give it the chance to get any worse. Lets see, this will be the fourth doctor I will have shown my booty to. I've always been super healthy and a fast healer, so I'm hoping that whatever is done, I will have no problems. Good luck to everyone and I will keep posting as I know more!
Date: September 11, 2008
StoryTo all the pilonidal pals out there!
Firstly, I want to say that this site was seriously fantastic to have! I was so incredibly nervous prior to having my surgery and I think I read every single story that was posted!!
I am a female from Sydney, Australia, and I had my surgery on the 23rd of July 2008. I first got my pilonidal sinus back in Feb 2003. I, like most, simply thought I had bruised my tailbone in some way. I use to be someone who would never go to the Dr and would just hope things would go away. Well, by the time I actually did go to the Dr I was in an incredible amount of pain, had a huge lump you know where, and was extremely ill from the infection. My Dr sent me straight to the Emergency Room and within a few hours I was being operated on.
They had drained the sinus, however were unable to cut it out at the same time. They left the sinus open to heal. As this all happened so quickly and many years ago now, my memories are a bit vague. To be honest I only really remember one main thing and that is when they took the gauze out after surgery. This was a big part of the reason I was so hesitant about having this surgery...they had me soak in a bath for 20 minutes and then they seriously began ripping it out like a bandaid...I have never experienced anything so painful in my life...so you can imagine that come time to remove the gauze this time around I was very weary!! This time I asked the Dr for Morphine, which I got...the Nurse couldn't understand why I was so insistent on having morphine! Well it turns out that things have changed since 5 years ago! They no longer pack it with the same kind of gauze - the gauze these days just twirls out in a little spiral and you can't feel a thing - incredible!! All that worrying for nothing!
Anyway, as you can see from the timeline, I waited 5 years to have the sinus removed. During that time it came back at least 10 or 15 times, and as long as I caught it straight away and got antibiotics the flair up would always subside. What pushed me to have the surgery though was that the antibiotics didn't work the last time. I was off work for a week, unable to walk without a walking stick, and in the end the Dr was about to send me to hospital, but instead I asked if she could possibly just drain it for me. All I can say is OUCH! Then and there on the Dr's table she cut the sinus open with a scalpel and pushed down on it and squeezed everything out of it like a pimple - trust me when I say I cried and screamed!
I am currently still healing from the surgery I had in July - it was open wound surgery. Unfortunately with me they actually found a second infected sinus below the first one. I ended up with what the nurses constantly referred to as one of the biggest they've seen - especially for a girl! It was 5cm deep, 7cm long and 3cm wide. So due to the size of my wound, I am still in the healing process. I have had no problems along the way and have felt NO PAIN!! Everyday a nurse comes to dress the wound - they are using Aquacel
on it - I honestly cannot feel anything they are doing.
Tomorrow I get to have my last appointment with my wonderful Surgeon, and fingers crossed, no more than another 2 weeks until I don't have to see a nurse anymore!! and can be normal and get back to the gym - I am missing it so much!!
If anyone out there wants to know anything, I just want to encourage you to ask people on this site, or your GP, or your surgeon. It is important you are comfortable with and understand what is going on with your body.
I wish you all the best :-)
Date: September 10, 2008
StoryHello Folks,
I had an Excision with open healing 6 weeks ago and I am fully healed. Done. My doctor (Dr. Weiss) gave me the all clear yesterday. Pretty impressive considering you could see me tailbone 4 weeks ago!! Dr. Weiss, who is an outstanding surgeon said it took me 1/3 the time it should have. I will let you know what I did:
Ate tons of vitamins every day and kept a detailed schedule:
-Vit A
-Vit C
-Vit D
-proteins
-Coral Calcium
-Vit B
-One a Day
-Fish Oil
-Vit E
-eat chicken breast
Did not sit down for at least 4 weeks
-layed on my side or stood up
-was really easy to do with the olympics and lightning bolts in the air;)
took hydrocodone
-it hurt tons til the last few days
-better to be without pain than in it
-I feel your body heals much faster completely relaxed
-weening of the drugs right now and is pretty easy
-dont let anyone tell you how much you should hurt!!
- 10/500 worked great for me, kept me in la la land for sure
Used the Vac
-The VAC is essential
-increased healing in a huge way
-little bit of a pain in the ass but with the hydrocodone it was no problem
Saw a nurse everyday
-The nurses came to the house everyday
-I got to know them and were very cool
-helped me to stay confident that everything was going perfectly (no infection)
NO JUNK FOOD OR SMOKING
-I smoke but quit for the healing time
-did not eat any junk food
Made Fruit drinks everyday morning and night
-2 bananas, half and half, white grape juice, raspberries, blackberries, blue berries
In the end I am back at it much faster because of the time taken during the healing process. Let your body tell you what you should do. It does not lie!
Thanks for the site, it has been an inspiration for me. Good luck and enjoy the rest, I sure did!!
Date: September 09, 2008
StoryI had my 1st abscess in March... one day my tailbone just started hurting.. 3 days later i was crying my self to sleep.. the next day i went to CSH (combat support hospital) they immediately took me in for surgery... they put me under and when i woke up i dont think i ever felt better... the only thing that hurt like hell was the daily packing. i had a open wound that was about 1.5 in deep. it was teh worst 30-45sec, packing that sucker, of the day. none the less i healed up just fine 4 weeks.
I thought that being in Iraq i would have major problems with the dust and stuff.. turns out the
surgeons took very good care of me...
6 months later i do have deep dull pains from sitting too long, the doc says tht this maybe from scar tissue.
so far no inflammation or bumps or nothing .. just dull pains if I'm sitting for long periods of time of on hard surfaces.
i just wish it would all go away.... i am also looking into losing extra weight.. anything that would help me from going through that again.
Date: September 03, 2008
StoryHi, well I might be facing my 4th surgery now. I had my first removal (open surgery) in January 06. I went into a remission after the first one until I fell on my butt during the last month of my pregnancy over a year and a half later. My second cyst formed in August of 07 and i had it removed on Febuary 08 (closed surgery). After the closed surgery the bottom of my incision opened up and I had to have a third surgery in May of 08 (open suregery). Now it is September and I have the severe pain all over again. Going back..in may of 06 I was married. Since then and after the birth of my daughter, this disease is causing issues in my marriage. Its tough and hard to face. I also have another disease in combination with pilonidal it is called Hidradenitis. I pray for a cure or that it will finally go into some "remission". |
