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Personal Stores
Archive #34
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Stories from Nov 1, 2006 to Dec 31, 2006 |
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Date: December 30, 2006
StoryHi, my story started when I was 15 years old. (I'm 26 now.) I just remember that my tailbone felt sore and things like sitting on the bleachers during gym class really got uncomfortable; it went on like that for a while, with me shifting my weight in my seat to relieve the pain, or leaning forward so that my weight rested on my thighs instead of my bottom. Then the other shoe dropped. I honestly don't remember it getting to this point but one night I was in so much pain that all I could do was cry. My parents were
separated and my mom didn't have a car so I had to wait until my father got off work and made the 40min. drive to where we lived.
That night in the emergency room was the first time I ever heard the words "pilonidal cyst". They laid me on my stomach and sprayed the area around my tailbone with this "stuff", I still don't know what it's called, but at first it feels cold, and it gets colder and colder until finally it felt like the worst pain I've ever felt. I assume it was suppose to numb the area but I swear I felt the doctor cut into my skin. They drained the area that night, the relief was SO wonderful. Until it came back. The second time I hid it from my mother because I just couldn't face that pain again. By the time she found out I couldn't sit anymore. I went through that same horrible procedure 4 times each time crying my eyes out all the way to the doctor, the entire time I was in the waiting room and all the way through the procedure.
Finally when I turned 16 they performed surgery and excised the entire thing. (I was blessedly asleep for that one.) My scars start at the top of my buttocks and run down the inside of each cheek until right above my anus. Since the surgery the cyst has come back, but my scars are so tight that whenever the area starts to become infected there's no room for swelling and my skin splits open on its own. When I sat down tonight and read some of the other stories I felt like crying. I was born with this condition. I also suffer from other types of cysts and have had to have one removed from my eye (at age 4), my breast (at 21) and my ear (last year). I currently have one in my right breast the size of a golf ball and until I can't stand it anymore, it will stay right there. I'm just way too tired of this.
Date: December 30, 2006
StorySo I am a 26 year old female and I have been living with this disease for aout 12 years. I have not yet had surgery but am currently contemplating having it done during my school summer break.
I had my first flare up during high school at the age of fourteen. For a few days, I hade been sore back there but didnt think too much of it, because i get boils and carbuncles quite frequently. I thought it was a boil and had decided to put some warm compresses on the area when i got home from school. However, my body had other plans for that day. I actually started crying in the middle of class and no matter what i did, I was in extreme pain. So, my mother came to get me and took me home. Immediatly, we thought that i had broken my tailbone because by this time i
was howling in pain.
At home, things got worse and the pain became unbearable. So, much to my dismay, my mother put warm compresses on the cleft of my butt cheek for about 3 hours. This caused the cyst to come to a head and then drain, giving me some amount of relief. But then it came back again and again over the years, only this time it was smaller and less painful than the first horrific time.
I have always thought that this cyst and the sinus below it were a part of the boil disease that i have. However, about 3 months ago, I started to realize that this is the only boil on my body that never heals. It always comes back and never scabs over like the rest of them. And when it drains, it drains out of this small sinus hole under the cyst.
I have come to live with this problem. When i have a flare up, I have actuallly trained myself to sit and sleep a certain way so as to not aggravate the inflamed part of the cyst. I always thought that there is just nothing i can do about it but live with it and deal with the dull pain it brings me. But recently, I have looked into this myself on the internet and come the conclusion that maybe surgery is an option. Now mind you i have had many doctors and two dermatoligists look at it. Consequently, they all said it was a boil and never even mentioned a pilonidal cyst. Naturally, I was horrified and angry when i discovered that this is the problem that i have. I have seen pictures and listened to symptoms and i
am 100% positive that this is the disease that I have.
I am scheduling a consultation for two weeks from now at my school to see what my options are at this point. I didnt have the money for a dermatologist when i was growing up and now that im an adult i am trying to take care of the health problems that i have had since i was a kid.
I guess i dont have it as bad most, because for me it is bearable to live with. Sometimes i cry from the pain, but not often. Mostly, it is embarrassing and a nuisance if i have to sit for longs periods of time, like in lecture.
I keep all of you in my thoughts. It is comforting to know that there are others out there who have this disease too.
Date: December 27, 2006
StoryI first found out that I had A Pilonidal Cyst two months ago. At first I thought that it was just my tailbone. That maybe I had done something to that being as I am babysit 3 boys and they are always climbing all over me. WhenI started to notice a bump growing back there and the pain was unbearable I went to 24 hour treatment center. The people there were so nice and they told me what it was and what was going to happen. They did the lancing and drained everything out, which I have to say was kinda painful. I did however feel so much better after that was done. A few days later I went and had the packing removed which was a little painful as well. I felt really good after all this was done. It is now two months later and about 5 days ago or so it flared up again. This time it came very quickly. I am going to the doctor tomorrow. I'm not sure what they are going to do. I have heard that the surgery is very painful. But reading some of these stories it doesn't seem so bad. I just hope that I can get it taken are of and be done with it.
Date: December 22, 2006
StoryHello! My name is Ashley (Yes, I'm a female), I'm 13 years old, and I've had my cyst since I was 9 years old. So, around 4 years. Since then, I've had two surgeries, and I may have to get three. It does flare up like it is right now, but when it flares up, it usually last about 3 days MAXIMUM, and then goes away. But when it's like this and comes for weeks at a time, that's not the greatest feeling ever. When I was 9 and I first got the pain, yes. It was very embarrassing when I had to talk to my parents about it. They just thought I was fine, but when it became hard for me to get off of the couch and I was screaming in pain in the middle of night, and I would have to go home early from school, they finally took me to the doctor. From there, I had to go to another doctor, and then they fianlly said that I would have to get surgery.
Hating shots, I started to freak out and cry. (Remember, I was only nine years old) I was scared so much. Especially when they had to take me in right away and they took me to a biiiig room with lots of lights, and doctors. I didn't know what to do. Then when they gave me the anesthetic, I got very sick, but finally fell asleep. I woke up a few hours later to find out that I was allergic to it, and then I went home. Soon after, I had to go get surgery again. I was in so much pain when I was in the emergency room. Especally when I found out that I had to wait 10 hours and I wasn't allowed to eat anything. (I was about 10 at the time) But when it was over, I got to go home with my dignety wearing the hospital gown at about 4:30 am. It's really nice to know that there are others out there supporting each other. Especially when I found out that girls usually don't get this. Now that I'm 13, I think that I may have to get surgery now over the holidays. I am scared, but it's nice to know that I'm not the only one out there. I do think that I may be the youngest one though. Because it all started when I was 9. But it's still nice to hear other peoples stories and know that I'm not alone out there getting the surgery and going threw the pain.
Date: December 21, 2006
Storythis is for the person beneath me
i did the same thing for a while and then it became infected
so do not hold off to long because once its infected and becomes larger your surgery will take longer to recover from. and plus i had my first surgery about 2 weeks ago and its not to painfull at all. the only bad party is getting the dressings changed and like i said its not bad at all just take a painkiller 30 minutes before you go to have them changed.
Date: December 21, 2006
StoryI posted about halfway down the page about a P.C. that flared up for the first time about 2 months ago. Now that bout of pain has completely gone and i've had no pain since. I was worried at the time reading all these horror stories and since that time people have tried to post stories of hope and stories where things turn out. So all these people are trying to do that... but in most of the posts they start out like this... "Here is a story of hope for all you, I've had 3 surgeries...." I mean cmon, how is that supposed to make me feel better? most people who post seem to have had more than 2 surgeries!!!! That doesnt make me feel any better about it ! These arent stories of hope theyre still horror stories of multiple surgeries, horrible scarring, pain and recurrences...
There seems to be no such thing as a clean surgery. So for the time being I'm going to completely forget about it while it isnt causing any pain, screw the surgery, it can wait until it's absolutely necessary.
Date: December 16, 2006
Storyhi im alex from washington dc.i had my first surgery about a week ago and from what the doctor has said all went well. i havent bin in alot of pain but during my last two dressings i bled out. although the second time wasnt as much and stopped much faster it was still a scary exsperience. we are not sure wether it was from takign out the "paking" to fast or if i did it myself walking around to much but we wont be sure until we see the doctor again next week.
Date: December 16, 2006
Storyhey..this is to the person who posted before me...hey I had a cyst for aover a year before i finally had it checked out..i had surgery about 2 summers ago..and it was fine until just recently...i definitely have one cyst..maybe more..my first surgery was a closed, stitched up surgery which was good at 1st but then it came back in a different spot now..so it isnt ifected again..i jus have another one or two back...so what should i do?? i plan on seeing a doctor...and hipefully he does the closed surgery again because i have 4 weeks off and then i have college again so i want it all good for then..thanks!!!
Date: December 15, 2006
StoryWow - I had no idea how differently PD can affect people. I came across this site as I was preparing for a visit with a colorectal surgeon, for what I feared was a recurrence of my cyst after 20 years. (Turns out it was just the formation of two ridges of scar tissue that made it look like there was an opening. Whew!)
After reading the many negative postings, I wanted to share my story with those who are debating having surgery. Granted, I had 3 surgeries which took place 20 years ago, so the painful memories may have faded somewhat...but once you get over the embarrassment of people prodding your 16-year-old backside...it wasn't all bad.
My story started typically, with pain in my tailbone, which I thought was the result of falling onto the edge of a chair. After a few painful days, my Mom took me to our chiropractor. X-rays showed nothing was amiss, but adjustments didn't help, either. After a few more painful days, a lump formed at the top of my buttocks, right in what I believe is called the "cleft". The chiropractor referred me to a surgeon, who, with one look and a smack on my behind (I almost smacked him right back!)diagnosed the pilonidal cyst. Needless to say, we went to a different surgeon for treatment.
Lancing of the cyst was the most painful part of the whole ordeal, but after all the squeezing was over, it was covered with gauze and healed up nicely with the help of antibiotics over the next week or two. Following a barium enema and possibly some other tests I no longer remember, it was determined surgery was the best option, given the extent of the infection.
My first surgery was performed during summer vacation - what fun! I was given a spinal anesthetic and some other "knock me out" drug short of general anesthesia. The surgeon injected blue dye to track the tunnels the cyst/ infection had formed. The resulting incision was about 1-1/2" deep and 7" long, basically running the entire length of my "butt crack". At that time, the preferred healing method was the "open wound" route. And according to the surgeon I saw a few days ago, that remains the preferred method today. I was instructed to pack the wound, clean it with hydrogen peroxide (sounds like that is no longer recommended) and take sitz baths twice a day . Mind you, "packing the wound" entailed simply placing a thin piece of gauze into the incision and covering the whole thing with more gauze.
Although there was obviously some discomfort and I couldn't sit comfortably or do much for a couple of weeks...the pain level was low. This amazed me, given the size and depth of the incision. In fact, the area was more numb than anything.
Gross as it was, I did all of my own wound care - my Mom was too squeamish and I wasn't about to ask my Dad! The wound healed up by the time the next school year started. But after several hopeful months, a few sinus holes appeared along the incision, and then began draining. Some infection remained, which apparently, is quite common.
The next summer, we went to a different surgeon to repeat the whole process. But this time, the surgeon regularly cauterized the wound...I'm assuming it was with the silver nitrate solution I've been reading about here. Contrary to what other people have written, I found this procedure pain free. Again, the healing process went well, only to have one area flare up again the following year. That summer, I underwent my third and final procedure (this time, the incision was only an inch long) and that was the end of that.
In terms of after-effects: cosmetically, because of the placement of the scar, my butt cheeks hide it perfectly and it's not noticeable until I get to know someone really well :) The only lingering sensation is slight numbness along the incision, and sometimes if I sit too long it gets a bit tingly. But all's well that ends well.
Date: December 13, 2006
Storyhey..this is for the girl posting before mine right here...i had a surgery in which they stitched it up..it hurts for the 1st few days...its different for everyone..but for me..it got better after about a week and the stitches removing procedure takes no time at all and doesnt hurt at all...very painless for me at least..but i do think i have yet another cyst or 2 on my backside again and will prolly go thru with another procedure...which sucks but i gotta do it
Date: December 13, 2006
StoryHi I am a 16 year old female and have had this for a few months. I had it lanced and drained due to an infection and am getting it surgically removed next week. I am pretty sure they wiill stitch it-- i cant go through with the packing again! I am curious about the pain afterwards and the pain when they take stitches out. i am soo nervous/scared so any info will be appreciated.
Date: December 13, 2006
Story19 year old male checking in from lawton oklahoma. Ive had three surgeries so far. When i was 12 i noticed some fluid on my compression shorts around the top of the crack. i was a catcher so i was in the squat position quit a bit. i figure it was just sweat and boxer lint collecting. i would wipe it frequently, and as the years passed more often. By the time i was 16 i noticed that i had a little hole at the start of the crack.i was shy to talk to my parents about it, but i finally told them when i was 17. i had my first surgery sept 2004.
it was farly small, about 1.5 inches long, but about 2.5 inches deep. we packed with normal gauze. it finally healed in july 2005.
it reopened in october and i decided i would just deal with it. well it became painful and it was a real annoyance having to check my pants a few times a day for moisture. i had a second surgery in december 2005. This time they took out a little more area. we used the Wound Vac in hopes of quicker healing. my skin broke out and we were unable to use it for more htan a week. we continurd to pack with a variety of products. it finally healed in may 2005. it reopened in june. we tried to put the woud vac back on again but the skin broke out again after a week.
after attempting to heal it for the last few months, i had my 3rd sugery on november 20th, 2006. this time it was 3.5 inches long, and 1.5 inches deep. this time the wound vac has been working great for the past 3 weeks. it has shrunk down to 3 inches long and .75 inch deep. it seems to be healing much better this time. The things that IMO have been working are that my physical activity is limited to slow walking and laying on my stomach.the prior times i was actice with sports and work. I also have stayed on antibiotics and vitamins.
Date: December 13, 2006
StoryI JUST HAD MY 2ND SURGERY LAST TUESDAY, THE 5TH
I'M A 20 YEAR OLD FEMALE IN SUNNY OC CALI.
I'VE BEEN DEALING WITH THIS DISEASE FOR 2 1/2 YEARS NOW... MOST OF THEM HAVE BEEN PAINFUL.
IN JAN. 2005 I WENT THROUGH THE LANCING AND PACKING AT THE 1ST SIGN OF THIS AFFLICTION.
IN JUNE OF THE SAME YEAR MY DR. TALKED ME INTO "REMOVING" THE CYST SURGICALLY. HE TOOK OUT A 1 1/2 SQUARE INCH WIDE/ 2 1/2 INCH DEEP HOLE FROM THE TOP OF MY NATAL CLEFT... HEALING TIME WAS AROUND 3 MONTHS TO COMPLETELY CLOSE UP =(
DIDN'T HAVE TOO MANY PROBLEMS FOR AT LEAST A YEAR... SOME DRAINAGE AND SWELLING OCCASIONALLY.
THEN IN JUNE OF THIS YEAR IT GREW WORSE AND WORSE... THE DR. HAD TOLD ME THERE WAS A CHANCE IT COULD COME BACK AFTER THE 1ST SURGERY... NO GUARANTEES YA KNOW?
WE WAITED TO SEE IF THE AREA WOULD GET BETTER ON ITS OWN BUT THEN THE DOC FEARED THAT THE INFECTED SINUS HAD "BRANCHED" OUT AND SPREAD TO A LARGER AREA THAT THE FIRST SURGERY HAD NOT REMOVED.
I WAS THOUROUGHLY SHOCKED WHEN I AWOKE FROM THE DAZE OF THE 2ND SURGERY... MUCH MORE PAIN AND MUCH MORE SORENESS...
I FOUND OUT A FEW HOURS LATER WHY...
HE HAD TAKEN AN AREA MEASURING 2 INCHES WIDE/ 5 INCHES LONG/ 3 INCHES DEEP(AT MOST PARTS) FROM MY BACKSIDE... THIS WOUND IS HUGE!!!
AT THE AGE OF 18 WHEN I FIRST FOUND THE PAINFUL "BUMP" WE ARE ALL SO FAMILIAR WITH... I NEVER THOUGHT I'D BE IN THE POSITION I'M IN TODAY DUE TO A TINE IMPACTED HAIR FOLICAL...
THE NURSING TEAM COMES DAILY AND USES A SILVER IMPREGNATED ALGINATE (SEA KELP) TO CLEAN PACK THE WOULD... THIS STUFF WORKS WONDERS.. EASES PAIN AND INCREASES HEALING TIME... ADK YOUR DR. IF YOUR IN A SIMILAR SITUATION...
OF COURSE IT STILL HURTS... BUT IT COULD BE WORSE... IF ANY OF YOU HAVE ANY ADVICE... PLEASE TELL... I'M TERRIFIED OF THIS NOT HEALING CORRECTLY... THANKS FOR ALL YOUR POSTS AND STORIES... ITS NICE TO KNOW WE ARE NOT ALONE... =)
Date: December 12, 2006
StoryI was first diagnosed with a pilonidal cyst Labor Day weekend of 2005. Since then, I had it drained, packed and it healed up nicely. After that, I saw two specialists who advised me that it was very likely to return due to the sinus that remained after the initial draining. As of Monday, Dec 11th, I am now recovering from the surgery. I have heard many horror stories on this website about the brutal surgical procedure which includes a large area on your backside being involved in a very long recovery process. On the other hand, the surgeon I chose used a fairly new technique in which a very small incision was made over the actual sinus site where he removed the sinus. He then went on to make a larger incision on my left butt cheek about 3" long. He used this incision to come in transversely and destroy the cavity that had formed from the sinus. The cavity beneath the level of the skin is the focus of what needs to be removed, and by destroying it he has begun a healing process in which the granulation will fill in the cavity.
Not only was this procedure far less invasive than the others I have heard about, but it was also an OP surgery that began at 3pm and I was home by 6pm. I have not needed any more than 2 Over the counter pain meds and did not even bother to fill the Vicoden prescription due to the lack of any pain. My stitches come out in 9 days and then I can pretty much forget all about this problem. I highly advise anyone out there with a pilonidal cyst to investigate this surgical option if possible. I am planning a trip in two weeks which requires me to sit on a plane for a length of time and the Dr. has not expressed one bit of worry about my inability to do this by then. Good Luck!
Date: December 12, 2006
Storyit's great to see other people who are going through the same thing, especially women because when i did research on this, i read it was a man thing from not keeping the tush clean enough. i was appalled i had such a thing, but now i know otherwise. it seems that i don't know anyone with a pilonidal cyst. anywho, i've always had a sore bottom and always thought like everyone else, that i had a sensitive bum. but when i was 16, it was hurting again and i asked my mom to take a look at it and she found the little hole at the top of my crack. we waited a few days, and it got larger and started to ooze, and my aunt who is a nurse told us it was probably a cyst. i went to my regular doctor who referred me to my surgeon. he got me into surgery a week later. i used an epideral and sleeping meds, because i don't like general anestesia. i didn't find the pain too bad afterwards, unless my wound was being packed or cleaned. the worst pain though was taking the temporary stitches it. ouch!! i had a minor infection that we got rid of easily, and about two months after surgery my wound seemed to open up again. after some more packing it healed pretty well. the only weird thing is my scar is very sensitive and a peice of skin healed so that a bit of my butt cheeks are linked together. now i'm 20, and i think the cyst is back because every once in awhile it'll bereally painful to sit or do anything. i don't have a hole yet, but i have some oozing. it stinks they can't find a more permanent way to get rid of the cysts.
~Krissy (New York)
Date: December 12, 2006
StoryIts encouraging to read alot of the things on this website. I have been dealing with this thing for almost over 5 years now on and off. For the longest time I thought that I was alone. I have had only 3 surgeries, but many procedures in the office. For the longest time I was nothing but embrassed, but have learned that this is who I am, and I need to basically 'love the skin I am in.' I am actually going to try and take the more natural path with this cyst, has anyone else tried this??
-dealing with the pain in Seattle.
Date: December 11, 2006
StoryHello. Our experience started almost 4 years ago. My daughter has been battling this throughout her high school years. She has had 9 (yes! 9) surgeries. She has also had 3 "procedures" in office. She has had everything from a closure with a flap, to a wound vac. She is starting the process again as of 12/2/06. We are at our wits end with this. She is a very strong young lady, but everyone has their limits. I'm not sure what to do from here, but so far everything we've tried, has not been successful in preventing reoccurrences. I'm open for any suggestions.
Jaimie's mom
Date: December 10, 2006
StoryTo future story writers: please do not hit 'submit' two, three, or even four times; it will load eventually. Also, we all have epic stories to tell regarding pilonidal disease, but let's keep the stories somewhat brief. I tend to skip over the huge run-on paragraphs, looking instead for quick concise, information-based stories. How long have you had it? What did you try? What were the results? What have you learned? Any advice? That's it. Keep it simple, please.
At 23, I developed a drainage point in the may-ish 2005 (it's not a cyst; it's a drainage point from an internal infection.) I went to a dermatologist; he recommended a 30 minute outpatient procedure, never mentioning the word "pilonidal." Stitches out and two week later: it's back. It began draining continuously, probably due to the weakened skin in the area.
I saw a surgeon who recommened Dr. Bascom. Fortunate situation #1: I live 5 hours from Eugene, OR. Fortunate situation #2: I have a friend in grad school who let me stay a week in his apartment at no charge. Drs. Tom and John Bascom both participated in my "Bascom Cleft Lift" surgery.
It went well and I felt good enough to drive back home after a UofO vs. Portland State football game. By the way, thank you makers of the coccyx cushion.
It has been just over a month now. The bandages came off a couple weeks ago. There are no external stitches nor "packing" involved in this procedure. To me, the open wound healing is insane. My butt crack has kind of lost its groove. I'm a little flatter back there but don't plan for many people to see it. It was worth it. I've been working out and running just fine. I'm convinced I've beaten this thing with the help of the Bascoms. If it comes back, I'll be back here. Otherwise, I don't plan to visit pilonidal.org again. For further details, email m_onstot@yahoo.com. Godspeed, everyone.
Date: December 10, 2006
StoryHi-I thought I would add some hope to this site! I've been writing on and off for 3 years as I dealt with this problem.
I've had 4 surgeries without any healing! However, I finally found the man. He is a colo-rectal doc-he helped me much more than my first doc a vascular surgeon (butcher). I had a z-plasty done. It basically turned by butt crack inside out (z shaped scar) so all of the area can come out to the open and finally heal. I had to stay overnight in the hospital and I was out of work 2-3 weeks. But so far it has worked and is healing nicely. I also in the process went to see a plastic surgeon who suggested a skin graft and 6 weeks off of work-no way. Keep checking your options and don't give up.
Date: December 09, 2006
StoryI just had my second surgery on November 29th. I had the first one October of 2005. My incision never healed properly and the cyst eventually came back! I was really nervous when I went in for my second surgery, but this time is totally different! The surgeon went all the way down to my tailbone this time, but the incision was only half the size of the last one. I havent been in nearly as much pain this time, nor did I get sick from the anesthetics. I really hope that this time is what finally gets it, because Ive suffered from this for roughly 5 years and Im ready to get on with my life and be pain free! Good luck to everyone and remember that surgery may sound scary, but it is so worth it to just suck it up and get it done!
Date: December 08, 2006
StoryIt's so crazy reading these stories seeing how different Dr.s handle P.C.'s. I was glad to find this site before my surgery and it helped me to determine how I want this situation handled and what to expect. As my story goes, I am a women who in June of 2006 at 28 yrs of age, felt a sore tenderness in my tailbone area. I knew immediately what it was because I have had several friends have Pyonidal cysts. Being shy and modest, I opted to wait for things to run their course. After a few days of the initial tenderness I was very uncomfortable. after a few more days I was in unbelievable pain.
I called the Dr, It was a Friday and made an appt for Monday. I decided I couldn't wait I hurt too much and opted for the emergency room that night. The Dr lanced it and packed it with 3 feet of packing stuff. He said it was the deepest he had ever seen. The pain from lancing wasn't that bad I felt relief from the pressure the cyst had caused I don't recall them using a local to numb the area. The DR told me to come back to the emergency room the next day for a repacking and gave me antibiotics and the bottle of packing material. The next day, he repacked it and it was the most excruciating pain I have ever felt. I sobbed from pain the entire time. It seemed to take forever. I couldn't even pray because my mind was dizzy with pain. The Dr. told me to go to urgent care the next day and have the DR pack it with what's left in my bottle, then follow up with my primary over the next few days. He said if it ever comes back I need surgery.
The next day I went to urgent care and that Dr just looked at my butt... didn't even touch me. He said "it looks fine" and told me to see my primary Dr the next day, and if it comes back have surgery. Then he took away my bottle of packing material and gave me my nearly $500 bill for the visit. The next day I kept my appt with my primary DR, he said it seemed to be doing well and now is the time to soak in warm soapy water. Over time it seemed it healed ok but then in OCT 2006 I felt a tenderness next to the scar where the cyst was... it CAME BACK! but moved off to side because of scar tissue. I called a surgeon I know my DR associates with and made an appt. I saw them on a Monday and made the appt for surgery that Thursday. It was a day surgery and I was put under. After surgery I was in a lot of pain and felt nauseous over the next 4 days. I was on 2 types of antibiotics and pain medication. It was the 1st time in my life I made sure to take my meds on time and to completion, I was taking no chances.
I laid on my side on the couch or in bed, I couldn't sleep for more than 1 hour incriments for the 1st 4 days. I kept an ice pack on almost continuously too. My mom nursed me and waited on me. My wound was bandaged and I was under orders not to mess with it at all. I took off work and had a follow up appt on Mon (5th day), the DR said it's healing well, and he changed my bandage giving orders not to mess with it at all unless it becomes sopping wet from the shower. I took showers very carefully bending over as to make sure water couldn't trickle down my back to that area. It was the next day on Tuesday I had to return to work. Sitting all day was most uncomfortable and I felt nauseous the entire week. The pain pills helped, but weren't the God send I was hoping for. The next week was a state of constant uncomfort, frequent painful spasms and wound itchiness. I made another appt for Monday and the DR decided not to remove the stitches. He said he has seen far too many problems occur and would rather be safe then sorry. He said to keep the bandage off and let air get to the wound, I could let warm water run down it in the shower, but don't wash it or soak it.
The following week was uncomfortable, there were sevreal sore to painful spasms, and severe nearly constant itchiness. Since running out of pain meds, I had been taking Ibuprofene. 2 days before the stitch removal appt it got extremely painful again. I couldn't sleep because every painful movement woke me. I am a back sleeper but couldn't sleep on my back because of the surgical wound. The day of the Stitch removal had come a little more than 3 weeks after the surgery, and it was a great day for me. It was amazing how much better I felt immediately after the stitches came out. I could sleep again! I could sit again. I had no pain. It's been a month since the stitches came out and I am still healing very well. I occasssionlly get mild spasms and times of itchiness in the area. Occassionally I have to shift in my seat at work from getting sore But I imagine it is still in the healing process so it's normal. There have been times when it even felt like maybe it came back again, but I read it is normal to think that, based on tenderness in the area. It's scary to me though because my scar is raised so I don't know if what I feel is scar tissue or another one forming. I am being hopeful though because I'm pretty sure it's just my paranoia. I just pray I never have to go through it ever again. I have to be honest, It really was a painful situation over all, but it went well for me, no complications. So long as there are no reoccurances, it will all have been worth it.
As a side note, my Dr had said that there is a 50/50 chance that infection can occur when one opts for the closed incision. After my initial packing expierence though, it was a chance I was willing to take.
Date: December 03, 2006
StoryJust wanted to post a positive story! Im a 24 yr old woman (pale skinned, not hair, very slim and definitely not sedentary! All those risk factors are a croc@!) and my pilonidal first presented itself back in February this year. I felt the lump in the shower one morning.
I'm a nurse so I did my research and realised what it was. As it got larger and more painful I went to the doctors where i was prescribed antibiotics, but told they would have to drain it if it didnt go down within 48 hours.
So as I said, being a nurse, I wanted to know everything about it. I came home and did a heap of research and nothing I read seemed to be good! So many horror stories! Left me feeling quite petrified.
It did ease that first time, although a small non-painful bump remained. I was relieved and hoped it wouldnt come back. Unfortuneately a month or two later it did. Antibiotics again, and a reccommendation to cut it out and referral to a GP who would cut it out in his rooms.
This time I had a severe systemic allergic reaction to the antibiotics. Awesome! But I was still petrified of anything surgical to be done about it - all the stories of wounds not healing, endless surgeries, open wounds and packing etc. None of those options sounded attractive so I decided just to live with it, take antibiotics if needed and investigated all sorts of homeopathic remedies and vitamins to up my immune system and hopefully prevent it coming back.
It came back another 2 or 3 times I think during the year, and I was still determined to live with it until the last time. Mine had never drained, and the last time it blew up it really blew up. It had always been painful, but this time it just grew and grew and grew and was so painful no painkillers touched it, I could barely walk, sitting was impossible and it took 2 courses of antibiotics to get rid of.
I was nearly in tears at the doctors because I knew Id have to do something about it and was so scared of the results. I refused to have it done by the gp in his rooms as he had recommended and asked for the best surgeon he could reccommend. If I was going to do this, I wanted it done properly, by the best, no chances!
The surgeon I saw was great, very reassuring, but realistic at the same time. He would remove it under general anaesthetic, and I would need to stay in hospital overnight. He would also try to stitch it instead of leaving it open, if he thought this would work. He said even if he did stitch it, it would fail in 50% of cases and need to be packed to heal. I thought it was at least worth a try so I went ahead with it in September. SO I had the op, he cut it all out and stitched it closed and put a small dressing on it. It was really painful for probably a week after.
I had two weeks off work and tried not to sit or put any pressure on it or strain the stitches in any way. The surgeon checked it after two weeks and said it appeared ok, but it could still suffer a delayed breakdown in healing. The stitches had dissolved by this time and i put betadine on it twice a day and kept it super clean. After returning to work, I was really uncomfortable having to sit, and driving long distances was hard. I was getting sharp pains from the area if i stretched or moved the wrong way and it was horribly itchy!I did tear the scar at one point, reaching across into the back of my car. This left a couple of holes in the wound that i was told wouldnt ever close up, which left me quite worried.I could also still feel wuite a sizeable lump underneath the scar which worried me.
HOWEVER by November - the scar is perfect, the small holes HAVE healed, there is no lump underneath the scar and no more pain. Im so so thrilled with the result!
Good luck to all of you, I wish there were more positive stories like mine!
Date: December 02, 2006
StoryHi my name is Theresa and I just wanted to say that my daughter had a Pilonidal Cyst removed in August. She was eight months old. The called it numerous different things all just as scary as the next. It wasn't untill after the surgery and it was sent to the lab we found out what it was. It's also back and growing inside this time.I am praying it will be cured this time for her sake.
Date: December 01, 2006
StoryHey Everyone! It's Christopher (LagunaChris611 on the boards) . I love everyone on this board with a passion, all of you have helped me so much throughout this difficult time in my life and honestly I wish I had enough money to donate to this site so every one of you could be cured, but unfortunately I don't-so I am doing the next best thing. Providing hope to you all through my story. So here it is:
In January of 2006 I was on vacation in Laguna Beach, CA and felt a sharp pain near my butt. For about a year to 2 years, I had a pain back there and blood would occassionally drain from there. However, I was too embarassed to tell anyone. I flew back home and went to the skin doctor right away. I told him about the pain and he had a look and immediately said I had a pilonidal cyst. I was very scared and he told me I need it removed. He gave me antibiotics to treat the cyst and eventually the pain went away. However, since he told me I need it surgically removed, I decided to go see a colon and rectal surgeon whom treated my grandma for colon cancer. He was highly recommended to me by two people. His name was Dr. Sacksner. He told me that the cyst and pits would need to be surgically removed and that he would close the wound.
So we skip a few months of me just living with the cyst and being in pain a little...Feb...March...April...
In May, I decided to have the closed surgery. I don't remember much details, but the fact that my wound opened up a few weeks after. Dr. Sacksner kept saying it looked normal and even told me I could swim in a lake with an open wound and what not. I was in quite a bit of pain from having an open wound and I was draining excessively. He treated me with silver nitrate for about a month and a half. That was extremely painful. I honestly feel the silver nitrate did nothing for me.
All in all, I lived with an open wound for 6 months. I never went to a wound care center because my doctor was in charge of it! I thought there was nowhere to turn. Until I decided I would travel to Oregon to see Dr. Bascom.
I left on Monday, November 27, 2006 on a flight from Detroit to Portland, Oregon. I arrived at about 1 p.m., and headed to downtown Portland. It was hailing ice balls, so my family and I saw the downtown a bit and grabbed some lunch. We walked around a bit after it stopped hailing. What a gorgeous downtown! We left to drive to Eugene, Oregon at about 3 p.m. We arrived at Eugene, Oregon at about 5 p.m., checked into the Eugene Hilton (about 10-15 minutes away from Sacred Heart Medical Center, Dr. Bascom's Office), and we all took a nap. We slept until about 7 p.m., then decided to go out to dinner since it would be my last night to go out. We ended up going to dinner at the Oregon Electric Station (cool restaurant, just OK food!). It was a very pleasant college town, small shops, small restaurants, but not country at all (there's Starbucks and a BMW dealership-so not country).
Afterwards, we went to the hotel and went straight to bed.
Tuesday, November 28, 2006
I woke up at about 5 a.m. (I was used to Michigan time). I had to meet with both Dr. Bascoms (for the first time, even though I talked to Dr. John Bascom on the phone before) at 9 a.m. So we went to Northwest Surgical Associates (Dr. Thomas Bascom's Office). It was connected to the hospital via a skybridge, so it seemed easy to move around. I met with the Dr. John Bascom (older fellow) and he answered all of my questions and what not. Then, Dr. Thomas Bascom (his son) walked in and I met him as well. I elected to have the surgery after hearing their presentation. I cannot tell you all enough how sweet, caring, professional, and just loving these men are. My appointment was at 10:30 a.m. with the anesthesiologist, so I walked across the skybridge to meet with him/her. I met with him and he said I would be having general anesthesia. He answered some questions and then lead me to the Short Stay Waiting Room. My surgery was scheduled for 1:15 p.m. Eventually they called my name and led me back. They put an IV into me and hooked me up to some other stuff (heart rate monitor, blood pressure monitor, etc.). I just sat there with my family for a while, and finally Dr. Bascom was ready to do the surgery at 4 p.m.
I woke up groggily and in slight discomfort at about 5:30 p.m., however, the nurses couldn't put me in a room until about 7 p.m. because Dr. Bascom forgot to write out discharge instructions (no big deal, I enjoyed being with the gorgeous nurses, plus I was not feeling good at all-throat was dry and hurting a bit). So about 7 p.m. I went to my room and recovered slowly. I ended up peeing that night, and even stood up to pee (thank god I peed because they were about to put me on a cartherator! ouch!). I had this tube coming out of me sucking blood out of the wound and I was in slight pain but they gave me peracap. I just slept and chilled with my parents.
Wednesday, November 29, 2006
I woke up and was in slight pain. Dr. Bascom came in at about 4 p.m. and had the nurse remove the tubing from my behind. Slight tingling, pain, numbing, pain sensation. I could shuffle around the room and even got in and out of bed by myself at night.
Thursday, November 30, 2006
I met with Dr. Bascom in the morning. He said I could leave the hospital (most only stay one night, I stayed two because my family thought it was better). We discussed some stuff and I then left the hospital. At 2 p.m. I was on a flight coming home (less then 48 hours after surgery!!!!). I laid down on 3 seats, hardly any pain coming home at all.
Friday, December 1, 2006
Hardly any pain, but still taking pain meds just in case. I may post some pictures of my new butt soon!
So that was my journey.
Some things you should know/information from Dr. Bascom:
-You will feel pain
-Your butt will never look perfectly normal after a cleft closure procedure
-Your crack will be more shallower
-Dr. Bascom calls it a cleft closure not cleft lift
-You will stay overnight in the hospital (99%)
-You will have a tube coming out of your wound area to suck out blood and drainage
-The nurses, hospital are AMAZINGLY GREAT!
-Dr. Thomas Bascom does the procedure while Dr. John Bascom discusses it with you.
-Dr. Thomas Bascom said that 67-87 out of 100 people will heal with a closed/open excision surgery, however, once you do not heal once, the chance of you healing from it again is about 10%.
-Once you do not heal from an open/closed excision surgery you are in a different class.
-Dr. John Bascom said excising all the pits, is like "a child burning his hand and to treat it, a doctor chops off his hand."
Anyway, if any of you want to ask any questions, please feel free to e-mail me, or if you want more details. I am getting tired again. I love you all and I hope this gives you the hope you need, that less than 48 hours after surgery I was flying home.
Date: December 01, 2006
StoryI am female, 31 years old.
I had a pabcess when I was about 13 or 14. I had always had a heavy discharge between my periods so for a long time, I thought the moisture on my underwear was due to that... but one day I noticed it had a very bad smell and was nowhere near my normal discharge. I did some "investigating" and saw this tiny opening where one shouldn't be. :)
It was discusting...oozed and slightly painful. I was so embarrassed that I didn't tell anyone for a long time-probably a year or so. I simply wore two pads back to back to cover my whole bottom, or I stuck a panty liner in that area.
I finally told my grandmother (whom adopted me-I call her mom) and she-being the ecentric crazy that she is-tried out all sorts of weird creams and home remedies...
When nothing worked, she finally became responsible and took me to a doctor-who knew what it was right away. He said I needed surgery and that it was quite large...
After the surgery-I spent a good month off from school-and then my grandmothers' husband died (whom I called Dad-but he wasn't related to me)...so I was home for a couple more weeks... I know I am rambling but my grandmother's theory was that I got this thing due to "trauma" when he would kick me. I know that sounds harsh...but he was an abusive jerk and would occassionaly chase me and kick me in the butt area... I am mostly German-so though I am not too hairy-I do have more than most women "down there..."-so perhaps the trauma of when his foot landed-somehow made my little hairs there-along with sweat (I was very physically active back then)...caused the absess.
Now I have about a two inch scar at the top of "tail"...but I have not had any reaccurance thankfully. Men haven't seemed to care-but it's weird when they first touch it...like "whoa...what is that???" :P
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Date: November 30, 2006
StoryI'm a 37 yr old male, 9 years removed from p.c. surgery and I can tell anyone that is considering the surgery that, while it is not pleasant, it is definitely a necessary thing. P.C. does not go away on its own.
I started having flare-ups and itching when I was 20 years old and living in Paris. The infections came and went, along with the swelling for a few years until one day at work I felt the thing burst - it was like I wet my pants, seriously. This continued to happen off and on - draining, clearing, re-infecting - for, all told, six years! Six Years! I was so scared of surgery, and scared of the cost that I could do nothing. I just felt miserable; horrible about my appearance, always uncomfortable and definitely not wanting to get into any social situations. It cost me many friends and the love of my life at the time. I had a some luck with acupuncture and chinese medecine, but the flare-ups would always come back.
Finally, in the fall of 1997, I got a job with decent benefits in NYC and decided to see my doctor, who referred me to s surgeon across town. the surgeon - with poor bedside manner - told me I needed surgery ASAP and that, "Pilonidal is deep. Very deep."
Two weeks later I had the surgery, similar ot many of the experiences that that are described here, only no good drugs to help with the pain. The surgeon said that I had to rest for three days and then resume "slow, but normal activity."
I went back to work a few days later - riding the subway and walking to work was hard, indeed - and moved very slowly, thinking that all was well with the sutured gash on my ass; it actually was strung together with wire.
I went to the surgeon 10 days later, thinking I was going to get a clean bill of health. He bent me over the table, took one look at my incision and said, "What have you been doing?"
I was scared and a little shocked. "Nothing," I said. "I've been at work and moving slowly and carefully."
He was angry now. "I told you to stay in bed for at least two weeks!"
"No," I said. "You told me three days and then start slowly back to normal."
"Slowly!" he yelled. "You went and ran a damn marathon! You have a blood clot down here. Very dangerous. We have to remove it immediately."
Now I was very scared. I thought that I would have to go to the hospital, endure more anesthesia, more doctors and nurses. "When can I have this done?" I asked.
The surgeon was putting on latex gloves. "Right now," he said. "This has to come out now."
The surgeon had me lean over the examination table. He clipped the wire from the wound and removed it.
"There's going to be some sensation," he said.
"Can you numb me up?" I asked. "Please?"
"No time," he said. "This has to come out now."
Next thing I knew, he had opened the infected inscision and was digging the blood clot out with his finger. The room flashed bright white, my head swam and I screamed. I pondered how unfair it was that I couldn't just pass out. He literally ripped me a new asshole - sorry for the language.
He packed the wound, told me to go home and to have a nurse come everyday to clean and re-pack to wound. Most of all, he said, stay on your stomach.
I stayed on my belly for the next six weeks. I had a nurse come once and then a very good friend - my best friend to this day, as you might imagine - came over every day, brought me food, changed the bandage and entertained me while I healed slowly, slowly...
Within eight weeks I was practicing yoga every day and taking meticulous care the keep clean and eat healthy. It's almost 10 years and I have had no real problems, besides an itchy scar when the weather gets cold.
Even after all of this, I still maintain that my quality of life is infinitely better than it ever was with the evil cyst. Seriously. I'd do it all again if I had to just to not suffer the self-loathing, humilation and pain that came with "living with it." Get the surgery, get it over with and get on with your life.
Happy to answer any questions about my experience if it will help another do it the right way. Ahazeuris@yahboo.com.
Date: November 28, 2006
StoryIm a 25 y/o male who has battled the p.c.
I am in the military and I work on aircraft and while working on the aircraft I hop around on my butt alot putting alot of pressure on my tailbone.
One day about a year ago we were doing alot of work and by the end of the night I felt some pain under my tailbone but didnt think much of it. The next day at work I could barely sit or walk.
I let it go untill the next day when I could no longer sit at all. I decided to go see a doctor but the nurse saw me first and had a look at it. She said there was nothing they could do but to take motrin and try not to sit untill it felt better, or I had the choice to goto the ER.
I decided to goto the ER and after laying on the floor for 5 hours a doctor saw me. He knew right away what it was.
I got on the operating table and and gave me 8 local anesthetics and morphine. After the morphine kicked in he started to cut, and even with the morphine and locals it was the worst pain I ever felt.
He ended with stuffing 2 1/2 feet of thin strip gauze in the hole and sent me on my way.
For the next 30 days I stayed at home using vicodin and percocet everyday and making daily trips to the doctor to have the gauze changed out.
After about 45 days the wound was healed.
Well, about 8 months go by and I felt the familiar pain coming from under my tailbone. This time knowing what it was I went back to the doctor and he scheduled me an appointment.
A few days went by and I went to have it cut back open.
During this procedure he cut a blood vessel and had to cauterize it. The pain of cauterizing was intense.
Here I was again going everyday to see a doctor to have the gauze changed out. Like last time I was going to the local hospital on the base I work on (The main hospital where the surgery was done was on another base) to have the gauze changed.
A week went by and I went in to have the gauze changed for the day and the nurse who was doing it accidently broke open the blood vessel that was cauterized. They couldnt stop the bleeding and for 40 minutes they applied direct pressure and it didnt stop. They finally stuffed a whole roll of gauze over the wound, taped it on and told me to call my squadron to get a ride to the main hospital on the other base.
I got my ride and by the time I got to the other hospital there was blood everywhere. It was all up my back, down my legs, and all over the truck seat.
I walked in the hospital and was met by 6 nurses and escorted me in the ER and they told me to strip down. Well, I did, then they said lay on the bed and I did that.
I then heard a nurse say "there is so much blood everywhere that I dont know where it is coming from". Well, they finally found it and 2 doctors came in and used magnesium nitrate to cauterize the blood vessel again. They got the bleeding to stop and repacked the wound and sent me on my way.
I finally made it through another 35 days of going everyday to have the gauze replaced and the wound finally healed.
But to this day, every week or two I feel a small pain from the area or the sensation of it itching which is what it felt like originally.
So far though, so swelling, and never had any drainage except for when they cut me open.
I got used to the pain and the time off work. I dont want it to come back, but if it did I wouldnt mind to much because laying on the couch for 30+ days on vicodin and percocet and not working was rather nice.
Date: November 28, 2006
StoryI am the Mother of a young, beautiful, intelligent 19 yr old female, at the age of 15 had surgery to remove a Pilonidal cyst.It consisted of a 8" incision, removal of the cyst,cleaning out of the tunnels(NO ONE has mentioned)and incision was stitched up.A month of extensive cleansing,gauze packs to keep it dry and learning how to sit properly it healed. Dec.2005(now she is in college)a spot in the incision broke open,so she had her 2nd surgery. The surgeon said there was no cyst,but removed alot of scar tissue,hair and fluids.1 month after surgery, still not healing, she drives 200 miles back from college every 2 wks to the surgeon,asking him if there is infection?or tunnels?or a stitch didn't get removed properly? he states all looks well.
This goes on for 5 months,during this time frame after surgery there is an open hole she is packing with gauze, drainage of fluids or gushes of blood and back pain and I am researching all the data I can find on the internet about Pilondal Disease,cysts,etc.so I know exactly what we are dealing with and this time when she goes to a surgeon,I am educated on this issue.I made an appt with another surgeon to see her as soon as summer break May 2006 she didn't want to miss any more of her Freshman year in college and has a high tolerance of pain. The New surgeon does a procedure in his office to find a 2 1/2" suture left in her,infection,tunnels and said it was as bad as when she was 15 yrs old, without the cyst,but has Pilonidal disease.No guarantees if more sutures left in the incision,without surgery.All summer of nuturing and pampering and the hole finally closes,just in time to start her Sophmore yr at college.1 month later Sept.06 it gushes blood, she is in ecruciating pain when she goes from a lying to sitting position in the spine like she's paralyzed.The new surgeon states this symptom is the release of infection,he finds yet another suture that was from the 2005 surgery.He does the same procedure,uses magnesium nitrate to seal off the bleeding,Thanksgiving break had it checked again, the hole has healed over and hopefully will not have to have surgery a 3rd time. She truly does look hacked up and it is a horror story but if this educates even one person from this nightmare of an ordeal,it is worth informing you. Pray for all who suffer this problem and for modern medicine to make it soon a laser or lathroscopic surgery.
Date: November 26, 2006
StoryA GOOD STORY!
I am a 21 year old female who has battled with the dreaded p.c. flare ups for over a year now. I noticed that I would get sore in that area in high school once in a while but it would go away after a few days. Then last year around this time I had my first infection. I did not notice any sinus but the pain was horrible. I found this website and then called my doctor. They prescribed antibiotics for me as I was pregnant and they could not operate on it. All in all over the past year I've had about 6 flare ups, one drainage at the ER and had stopped responding to the antibiotics prescribed.
So, I waited for this last infection to clear up, made my appointment, packed up the kids (1 and 4mnths.) to stay at my moms house overnight and went in for to have the evil cyst removed. I was expecting the worst (eg. open healing, large wound, terrible pain) but the doctor said that although she leaves some wounds open to heal, she thought that since I didn't have an infection at the time and that I had only a small sinus that she could get it all out easily and close me up. The local anest. was the wost part, oh and I was awake for the surgery so I had to hear the cutting...the nurse actually sang to me because I was getting sick from the sound...an dabout 20 min later stiched me up. I ended up going over to my mom's house for a few days so she could help take care of me and the kids because my husband was away, but it's been a week since then and I have no infection, am sitting here at my table writing this story and have minimal discomfort at this point.
I still have a little way to go before I am fully healed, but know that closed healing is an option.
I was so afraid of having the surgery because of the recovery time. I have two small children and could not see how that would fit in, but I am just so glad to have the cyst gone. Even if I had to have open healing I would still feel great to have this problem dealt with. For the last guy who wrote about being scared of the surgery...I understand...but DO IT!!!! It will not go away and my life feels like it has been on hold for the past year because I have been afraid to travel, and the pain and antibiotics are not fun...girls you know why. If you are worried about the recovery time, try to schedule your sugery for a time when you can have some help from friends and fam for a few days. If you don't have anyone to help, send the kids (if you have them) to daycare for a few days so you can rest or get it on a thursday or friday so a spouse or friend can help. GET THE SURGERY!!!!!!!!!!Seriously!!! God willing all will end well with my healing but I feel great. Thanks for reading my story and I have used this webpage to learn about this stupid cyst and to get the courage to have the surgery. THank you everyone.
Date: November 22, 2006
StoryI'm a 23yr old male and have never had any Pilonidal problems before. However, three days ago I began to get a dull ache in my tailbone region. I put this simply down to sitting in a chair all day at work, then coming home & sitting in another chair! The next day however, the pain was like nothing I've experienced. I could barely sit down at work, I was perched on the edge of my seat, and it got worse. I had to sleep on my stomach beacuse it hurt so much. I woke up in the middle of the night and the pain was immsense. So I got up and decided to investigate the "region". I the area was hard and swollen and definitely did not feel normal. It was incredibly painful to the touch. There appeared to be a tiny small hole (which I know believe is a sinus thing) and I could've sworn I'd never seen it before. This got me quite nervous. There was also a silvery looking thing at the top of this cavity, I thought it was a piece of lint or something but I couldnt get it out.
Well, failing all else I wondered if this was one of those kinds of pimples which the surrounding area can get quite sore, but on a much larger magnitute. so... I took hold of the area, bared the pain, and squeezed. About 3 seconds later I got the fright of my life when out squirted this brownish/clear liquid, followed by blood, I started to get quite scared, It smelt disgusting (as alot of these stories have mentioned). So I squeezed a bit more, drained a tiny bit more blood, then it stopped draining. It wasn't much at all, less than a teaspoon. The pain relief was almost instant, but was still a bit sore. Today the pain has almost completely disappeared and there has been no further drainage so I am hoping it stays away.
However, after reading all the stories on this page, I'm absolutely terrified of a flare up and the possibility of surgery, because almost every single story on this site IS a horror story - immense pain, infections after surgery, MULTIPLE surgeries, flare ups, healing complications. I mean, whats the point if surgery doesnt work? I'm terrified of surgery and don't want it, and by the sounds of it no one has actually had a successful surgery??
Has anyone found surgery to be a GOOD thing??? Where are all the good stories?? I'm scared!
Date: November 21, 2006
StoryI had a particularly interesting experience with my "Pilonidal" as I travel very often. Being 19 years old
i've never had any serious natural medical conditions before this. Traveling is almost exclusively
business related but 7 months ago I was visiting my parents in the somewhat stateside unknown
country of Montenegro. While I do speak, understand, read, and write the language fluently I did
grow up stateside almost entirely.
During a slip on a particularly precarious set of marble stairs I fell pretty much on my behind. Soon
thereafter I was in pain, but assumed it was from the fall. As time went on a week, and then two
weeks passed and with every passing day the pain got more unbearable, to the point that I could
not walk very well at all. I noticed a very easily identified bump form and decided to give in and talk
to my mother (who knows the area well) . Going to the first hospital I waited for the doctors to exit
a meeting for nearly 2 hours before I was seen.
A quick glance by the doctor and he identified it as a "very common problem among young males"
which entails a hair "bending or poking into skin and creating an infection" . He referred me to
another doctor on the other side of the bay area and seemed to make a light suggestion that a
"small cut" would be required.
By the time I got to see the next doctor, 4 days later, walking was
a pretty damn big burden just on its own.
The hospital was somewhat dirty and run-down and I was in a foreign country pretty much stuck
(knowing I could'nt make the flight back to the states for surgery) . Going into the doctors office
He took a quick look and I pretty much went into a panic as about 10 seconds later asked his
nurse for a scalpel. Which is where I experienced and extremely sharp excruciating pain for
about (or what felt like) 10 seconds or so. It's just now that i've realized after reading the site that
in essence this was my "lancing".
He put me down for surgery in 2 weeks and immediately distressed that I need to be operated on
still in a bit of pain I asked about anesthesia and he said usually the best way to do it is locally.
Even though the lancing was done with no anesthesia I felt immeasurably better afterwards.
Being able to walk, lay, and even sit with little to no discomfort, but I did feel a slight pea-sized
"Lump" in my upper natal cleft.
This served to boost my confidence in the doctor's abilities, as up until that point I did'nt know
a damn thing except that he was recommended by my mother. 2 weeks later I was admitted
to a hospital the next town over and went in for surgery... which I stayed in for 3 days. One day
before which is where I had to drink some sort of vile-tasting suspension fluid that made me
use the restroom incredibly often (affectionally known as a laxative i'd presume) and was told
not to eat 24 hours ahead of time.
I was given a consent form and signed under Spinal Block after speaking to the anesthesiologist.
About the options (which in this case were General, and Spinal Block) and was told explicitly that
the spinal block was painless, at that point not knowing the difference between it and epidurals
(and hearing so many epidural accounts had me pretty mortified) .
The surgery was scheduled for
8 but done around 1 pm which further served to shake my faith in the hospital.
The "spinal" was almost completely painless except for a very very slight feeling of pressure
when the needle went in, and after that was done with the sigh of relief followed suite. Seeing
as before op I had been focusing so meticulously on the spinal aspect that I was terrified of the
getting one, I especially hate needles no less. During the surgery I was fully awake and actually
was introduced to the disease's history by the anesthesiologist who enlightened me to the "jeep
rider's disease" aspect of it, I figured it was a veiled attempt to make me comfortable but I had
already been plenty comfortable not feeling the needle.
After the surgery I stayed in for one extra day, and for 6-7 weeks afterwards went to a nurse every
day to have the wound re-bandaged. It's been about 7-8 months since then and now to look back
on it I sometimes think about just how overwhelming it all was, the spinal, the going "under the knife"
for the first time i'm actually at a doctor's office for anyting except a routine check-up. No less the
entire country being unfamiliar all served to make it seem more like an ordeal than an operation.
The entire cost of the operation, healing and bandaging all together cost 120 Euros, which translates
to I believe somewhere around 150 US Dollars (lancing was'nt charged for). Throughout the entire experience, both being in a
foreign area and the entire medical aspect being just utterly scary in conjunction, it was my girlfriend
who had kept me sane throughout the entire thing no less all the physical care, bandaging and help
received which i'm infinitely thankful for.
The entire event to me was completely shrouded in an air of
inevitability and a bit of insecurity in all. But nonetheless, i can summarize that my only bad experience
was the Lancing with no anesthetic, and for as well as my healing is progressing now I feel as if it
was a small price to pay. It's only now after 7 months or so after the surgery that I looked it up on Wikipedia.
Not being able to find much on WebMD and similar sources I pretty much "gave in" during the actual
event.
It was just today that I stumbled across the site and found the stories and the community and FAQs
it offers and thought I would share my story..... Thank you for reading =) and I truly wish you all the
best of experience and the most expeditious of healing in whatever your pilonidal "adventures" may
bring you. Best of Luck!
Date: November 21, 2006
StoryHI NICOLE HERE AGAIN WELL I HAVE HAD MY SECOND OP AND GUESS WHAT ITS BACK AGAIN, I HAVE BEEN TO SEE MY CONSULTANT AND HE HAS GIVEN ME SIX WEEKS TO RECOVER OTHER WISE I WILL BE GOING BACK IN FOR ANOTHER OPERATION OF A DIFFERENT TYPE I DONT REALLY KNOW AHT HE WILL BE DOING I JUST KNOW THAT HE SAID IT WILL BE A LOT MORE PAINFULL AND WILL TAKE LONGER TO HEAL ASWELL I AM GETTING TO THE END OF MY TETHER SO IF ANYONE HAS ANY IDEAS OR THOUGHTS THAT COULD CHEER ME UP PLEASE LET ME KNOW, YOU CAN GET ME AT NMCPINK@YAHOO.CO.UK
THANKS EVERYONE
NICOLE
Date: November 19, 2006
StorySo when I was probably a junior in high school I started noticing i had drainage on my back side. I was very embarassed about it and did not want to tell my parents. After 6 months of draining I gave up and told my mom and who knew what it was exactly. Supposedly it runs on my dad's side of the family. I had my first surgery when I was 17. This past March of 2006 I started getting pains again. So I flew home from college and learned from a doctor that it couldn't have came back. Two weeks later it started draining and in May I had my second surgery. The second surgery took probably over 3 months to heal because everytime I did something it would open up. Now 6 months after my surgery I have another one growing. You know how annoying this is because I'm not even 20 and I would have my 3 surgery.
Date: November 13, 2006
StoryThanks everyone for posting there accounts. It has helped me get through the pre surgery, surgery and wound cleaning stage. I am currently 3 days post-operation (Pilonidal excision, open wound) and am blogging the ordeal. If you want an honest account of what this entails, please visit. http://evanspilonidal.blogspot.com/
comments welcome, but please be discrete. You can also email me if you need some information.
Date: November 10, 2006
StoryI am a 26 year old female. About a year ago I noticed a small bump that I thought was a pimple on my butt. I didn't think much of it....it would get sore every once in awhile, but nothing too bad. I went to the doctor after a few months, and she said it was a sebaceous cyst & nothing to worry about. So I left it alone for a few more months. It grew larger and would flare up every few weeks, but I just dealt with the pain. About two weeks ago, it became very sore & started draining for the first time. So I went back to the doctor and this time she said it was a pilonidal cyst. She referred me to a surgeon who said it needed to be removed as soon as possible. So, I had surgery the next day (11/3). He closed the wound with stitches and inserted a drain for the remaining puss & fluid. The first few days were a little sore & uncomfortable, but nothing too unbearable....it was hard to sit or walk though. I basically laid on the couch for the first 3 days. I went back to the surgeon on Monday and he removed the drain, which took away a lot of the pain. It is still a little hard to sit, mainly because of the gauze covering the wound area. I was able to go back to work on Tuesday, but have only worked a few hours everyday since sitting is difficult. I go back to have the stitches removed next Thursday. My surgeon said that I was very lucky that the cyst was not worse, as it could have become if I had left it alone. The surgery was not all that bad, and hopefully it will be the only one I need!
Date: November 10, 2006
StoryHi, I am a 19 year old female from Delaware and I am thinking about getting the surgery. I used all the information on this site to try and better assist me in choosing the right doctor and asking the right questions. I have had the cyst come back three times and all three times I had to have the cyst lanced because all three times they filled up with blood and puss and made it unbearable to go through everday life. I do hope for the best with the surgery and I am very thankful to this site because it has help me understand and come to cope with what it is that I have.
Date: November 10, 2006
StoryI am a 17 year old female who had my 'thing' removed on monday (6/11) I ended up having an emergency operation but am pleased to say I am recovering well, although having my wound packed every day hurts like hell and I have lost all dignity this week due to everyone seeing my bum and having my mom shower my wound out each day. I started to get a pain in my coccyx a week last saturday which I could not explain and then the pain got worse and a lump developed... but I was always unsure as to wether the lump had always been there and my coccyx just poked out a little. After going to the DR's and getting antibiotics on the Thursday my 'thing' got worse over the weekend and finally burst on Sunday on the way upto the hospital. Me and my boyfriend could not work out what the foul smell was and accused each other of farting only to find out I had leaked everywhere! I am hopefully on the road to recovery and have found this site very helpful due to having no previous knowledge of the condition 10 days ago. Hopefully my wound will heal nicely and I can get back to sitting on my bum pain free (as this is starting to hurt already) A positive note: I had have little or no pain most of the time compared to the pain i was in before the op!
Date: November 09, 2006
StoryHi everyone,
Thought i'd revisit the site after my op, which thankfully 8 months on now seems like a distant memory - until i have a good gawp at my backside to check how the war wound is coming on! I was diagnosed Nov/Dec 2005 after going to the Dr to find out why i couldn't sit down. Had a sneaky feeling what it was as my cousin had one years ago. I'm a 32 year old female who drives all day so had to have a little time off on antibiotics for a week or so. Absolutely nuked the infection. Metronidazole is great but no alcholol allowed!! Also took a couple of others just to make sure it covered all pathogens.
To cut a long story short i knew i had to sort it so saw the Conultant and had to lose the embarassment! They've seen it all before anyway! Booked in for the op end of Feb and basically has a limberg flap, 3 nights in hopsital and a month off work. The first week is not pleasant just because of where it is but it gets better every day. The pain was fine as long as i didn't sit/lie on it initially. The best stuff in hospital were the sleeping tablets as you get fed up lying on your side and fron for an eternity.
Anyway 8 months on my cleft is coming back, my scar is looking a lot better but i'm not overly fussed about it as it's part of me and i'm too old to be pulling moonies anymore!! The one thing i will say having seen that some lady has had a reoccurence 30 years on is that my consultant said that out of the very few he has seen reoccur with the limberg flap procedure have all been patients who smoked. Unfortunately i am still trying to give up because evn though it seems a while ago i wouldn't want to have to do it agin if i didn't have to!!
Good luck, get the damn thing out and i'd recomment a limberg flap from the off!! Kat
Date: November 08, 2006
StoryHi I am a 22 year old female I had my first major flare up back in May of 2004, it was really bad. I did not know what it was at first it was just a painful big red sore on my backside that hurt when I sat down. Well one night I went fishing with my now husband and father in law, it was about 10 at night and we were at a small lake here in town on one of the highest piers there. Well about halfway into the evening I said I am not feeling well, at that point I am told my eyes started rolling into the back of my head and I fell into the lake, I woke up under water freaking out like I was in a bad dream, if my now husband was not there to jump in and pull me out I am sure I would have drowned. They rushed me to the local ER and the stupid ER doctor told me it looked like a rash or irritation from my undergarnments. I thought he knew what he was talking about so I went on with my days applying diaper rash ointment to my backside.
Nothing worked so I finally went to my family doctor, that is when she diagnosed me with this wonderful issue. She had to lance it to get the infection to drain and I was on antibiotics for about a week. All had been going well no major flare ups just minor ones I could deal with. March of 2006 I had another horrible flare up, this time it would not come to a head, the doctor had to use a needle and syrenge to draw out some of the infection, after about 3 days of going nack everyday she finally referred me to a surgeon. I met with the surgeon the next day and he said that he needed to go in surgically and get the infection out. That was my first surgery for all of this, it was extremely painful, I was left with an open wound as deep as a mans index finger and as round as a half dollar. It actually healed well and rather fast. I went to see the surgeon for my check up and he wanted to do surgery to get rid of the cyst, because there was so much infection he could not get it all at one time.
So on October 27th 2006 I had the surgery, I thought all was going well with the healing, it was stitched and I had minimal drainage, I went yesterday (11/07/06) to get the stitches out, as he removed the stitches the wound opened more that he wanted and a bunch of drainage came flowing out, today I am waiting for the phone call from the doctor's office to get a wound vac. I am hoping this will help me heal faster and I can be rid of this problem hopefully. I know I have a chance for other flare ups throughtout life but I really hope not!! I am just not looking forward to carrying around the darn machine for about a month to two months!! This is something that affects different people different ways, no matter what there is an answer and we just have to hang in there and be strong and do as the doctors tell us too!! Much luck to all I feel your pain, we can literally say that are medical issue is a huge pain in the rear!!!
Date: November 07, 2006
StoryHiya, Had my good ole Pilonidal act up the first (and hopefully last) time when I was about 15 (28 now).
Realized what it was when I went to sit down one day. As soon as my butt hit the chair it was like a instant knife stab of pain. Told my mom the next day what was going on and she said that other ppl in the family have had it.
Anyhow, long story short, it grew like a baby for 5 days each one more painful to the last, and finally came to a head. I drained it myself and it never has flared up like that again. It get uncomfortable sometimes but I don't think much of it. Just wash there everyday. I pray for you poor folks you have recuring flare ups I don't want that kind of agony again. Especially folks who don't have health insurance. My advice on that is get dual citizenship in Canada if you are from the US. Universal Health Care rocks and everyone should have the right to Healthcare not just the ppl who can afford it.
Date: November 06, 2006
Storyi just did the below story\/\/\/. i wanted to say that you should not be scared of the surgeries. Everyone is different but mine were not bad at all.
Date: November 06, 2006
StoryWell i have a good story. I remember reading this when i had problems and getting really depreased, but this is a good story with a happy ending. I am 20 and had my first problem in high school, i beleive that i was around 15. I didn't have pain it was just a hole that would bleed when i went to the bathroom. But one day(about 2-4 weeks after the first bleed) it hurt and i told my mother. She made the Doc appt and we tried some creams but they didn't work, so the doc sent me to a surgen. I had my first surgery, and it was closed. I had alot of problems and it never went away.
I had 2-3 flare ups a year but took antibiotics and it would go away for a while. this went on until my 1st year in college. I had a lot of problems, because of the increased sitting and anther hole had developed. So i went to a surgen( age 19) and had a open/ w packing surgery. this went better, but it took along time to close. Now at 20 its gone, hopefuly for ever.
What i did was pray(and still do, alot of thank you's) alot, shave the hair from the area alot, clean it with soap in the shower really good. i took vit E for a while but stopped. after the surgery i sat very little. for the first two or three month about 2-3 hours a day, but i had to go back to school and it slowed the process because of sitting, but during the next summer very little sitting and it got better. I took stool softeners and fiber so going to the bathroom wouldn't stress the area as much.
Also try some physical activity that would stress the area, increases blood flow and circulation. all of this i still do so the area is healthy.
and i not saying don't take vit C or multi-vits, but i had the worst flare up that i have ever had when i started taking multi-vits, and i read a story up here where a woman was taking vit c and thought it may have cause a flare for her.
This is a bad situation but its is far from the worst. Just think that there are people that would trade places with you in a minute just to have a somewhat normal life. Dont give up and dont let i stop you for doing things you want. My main problem was that for 4 years i had not riden a bike, gone swimming or worn kakis for long periods of time and was so self concious about if i has drain through my pants or smelled. Dont let it change you into someone who doesnt want to live. I didn't want to kill myself and neither should you, but there were times when i wish i hadn't been born, and i seen people in life and my family with serious problems and they are not letting it get them down, so it is possible. Dont give up.
Date: November 06, 2006
Storyunfortunatly i have posted on this site several times. i am 21 years old, i have had two surgeries, and over 10 cyst flare ups in 3 years. my last surgery was august 1st of 06. guess what, i never fully healed and now my pain is worse. i went to the doctors today and she said she can't feel anything and the CT scan showed nothing there. amazingly i still have a thin layer of fat. that was a shock. she gave me antibiotics as a "test" to see if the cyst is back, but too deep to tell. or maybe it hasn't filled with fluid yet. and i have also been diagnosed with coccydynia because there is nothing else to call it. i don't know how to live like this anymore. it effects every single thing i do. the most annoying part is when someone asks you continuously to " have a seat" and no matter how many times you politely say no, they keep insisting until you tell them what is wrong or just sit down. they are trying to find a pain specialist, but they don't want to deal with my case because it isn't "back pain" i am at a total loss. i hope they figure something out.
Date: November 06, 2006
Storyhi im a 24 year old male and about two years ago i had this tender spot on the cleft of my butox and a little pimple well it got real bad and i went to see the doctor and he said it was pd well it draind on its own and now its pretty much gone. i still have a small sinus and all and some small flare ups that dont hurt me they just anoy me. i have decided to live with it as i have a huge tollerance to pain and im hoping that this is as bad as it gets i really havent had many problems like i said only small flareups and a little drainage but im hoping im making the right decision cause my doctor said if it doesent really bother me and i can handle it then i can live with it. well if you guys have any advice let me know thanx
Date: November 05, 2006
Storyi'm a college student, and the other day i was working on some homework for a few hours, and when i got up i noticed that my tailbone hurt a little... so i ignored it, figuring i had sat on it wrong, but the next day it hurt worse. then the day after that i hurt worse. and today it hurts even worse. i did a little research, heard about the pilondial disease, and found this website. i'm really worried. i've never had surgery, i don't want surgery, i don't even know if this is what i have. all i know is that my tailbone hurts, there is a little bump, but i'm pretty sure there isn't any "seepage." i'm so freaked out right now... luckily i have a doctors appointment, and i'm hoping that i get it checked out early, it'll be better... i don't know what else to think...
Date: November 05, 2006
StoryAt least now there is the Internet...I had my first pilonidal episode in college - you all know the deal - ooze, red, pain, fever, and it was lanced and that was it...
until..
3 years out of college - it came back - same symptoms - this time I had a pilonidal cystectomy..hospital stay - pain, but at least it's taken care of..
until..
30 years (yep) later - i am a woman in my 50's - and the oozing, redness, and pain is back. I am disappointed, and going to the doctor in two days.
Date: November 05, 2006
StoryHi, I am a 29 yr old woman from Denmark, and I didn't even know that my condition had a real name until a few days ago.
One year ago a co-worker told me that she had to have surgery for an abcess "in the butt crack" as she put it. I was shocked because I had never heard of a thing like that.
But in just a few months I would feel it on my own body.
In the course of about 6 months I had small flare ups that would go away and heal themselves, but last week the flare up just got worse and I found myself in excrutiating pain, probably worsened by the fact that I spend 3 hours on transportation to/from work each day and I have a sit-down-job at an office....!
Friday I had to see my doctor who called and referred me to the hospital for surgery the next day. So yesterday I went to the hospital and had surgery under general anastesia. They opened up the abcess and cleaned it out and kept it open. In a few weeks I will have to go to the hospital again to have more extensive surgery to remove the entire cyst.
I do have some discomfort now, but NOTHING compared to yesterday before surgery...
Just my story.
Date: November 05, 2006
StoryIn response to the 17 year old with a driving test on wednesday. I hope your abscess has got better. I'm no expert but the antibiotics will definitely help, no doubt your doctor has prescribed a type of antibiotic to help fight damaged tissue, these will attack the area and help clear the infection however the best thing is to have it drained regularly, which he may have already done? The antibiotics will take a couple of days to get into your system and build up a defence. When i had mine it took about 4 days to clear up properly but after the first couple of drainings i found i was sitting down fine etc, just felt a tiny bit of discomfort. Your test will only be an hour long, if it's gone down i don't see why you it should be a problem. Good luck, let us know how you get on with the absecess and your test!!
Date: November 03, 2006
StoryI'm a 17 year old girl who thought that, like many people, I'd hurt my coccyx on saturday but could give no reason as to what I had done it... I just woke up and it started hurting. I went to the Dr's yesterday after a lump developing and the pain getting worse and of course having no sleep, it even hurts when i lie on my front. I've been put on antibiotics but am a little worried for 2 reasons a) I have a drivin test next wednesday (its now friday) so am not sure if I will be able to sit in the car and drive and b) I keep reading that antibiotics don't really make the cyst go away.. I'm in the second year of my A levels so can't afford to have much time off. The only positive thing was my Dr said it was the start of a cyst so perhaps antibiotics may just get there in time and kill the infection.
Any one got any ideas if my ass will possibly be upto scratch by wednesday (day 7 of the antibiotics)
Date: November 01, 2006
StoryThis is the first time i have visited the site, by searching the internet i found out about this pilondal disease. I went on holiday to Zante in June 2005, a few days before we were leaving i had terrible pain on my coccyx bone, thinking i'd just hurt it or bruised it i used ibuleve extra strength. By the time we'd got to the airport to depart i could barely sit down (i was still applying ibuleve at this point!). It was making me feel so ill, i wasn't even excited about the holiday. The pain just wouldn't go, by the time we got to our apartments in Zante i just wanted to come home. By this point it was red and inflammed but i obviously couldn't see it fully and my boyfriend didn't know what to make of it, it just looked red and swollen to him he's no doctor afterall!
After a first days holiday in agony i plucked up courage to see a foreign doctor, something i never like doing. Anyway, it turned out he was fantastic (and costly!) he told me exactly what it was, gave me some anti-biotics and ibuprofen and injected my bum cheek (to be honest i didn't know what the injection was but it worked!) the next day i could feel it weeping (gross!) but i didn't mind, i just wanted to get better and enjoy my holiday. I went back to him 4 consecutive days where he drained it, cleaned it and put a dressing on. I was on the anti-biotics for most of the holiday but after the initial drama in the first few days it turned out to be a fantastic holiday. Since then i've had no reoccurances although there is a scar in between by cheeks and i often worry it may return. I still don't know why i got it, the only thing i can relate it to is some stress before we went of trying to sort out a job for my placement year. But i don't know if they are stress related. Anyway, up until now i just though i had an abscess, i didn't realise there was a disease. This website seems really helpful and reading others comments has made me more aware so thank you!
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