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Date: December 28, 2007
StoryHi I came here just to add my story and maybe help someone else. In 2000 I had my first flare up right on Memorial Day weekend…oh what fun. It was the weirdest thing I thought as most of you with your first flare up that maybe you hurt something. My husband was in the army at the time so we had to go to the emergency room. I HAD TO SIT for hours till I was seen. Of course a medic who was young and not very experienced had to work on me. He lanced it and sent me home with it packed and I had to go there twice a day to have the dressings changed, than come Tuesday I went to the doctors office for them to finish…it was so painful and I was on heavy pain meds and antibiotics…so come to find out after it healed that I was pregnant and this is why it came out. So through out my pregnancy I had 4-5 flare ups and it wasn’t fun b/c they can’t give anything stronger that Tylenol w/codeine. Oh and I forgot to add that my wonderful husband ended up repacking my wound after the first time. So after I had my daughter I was good, no flare ups for a couple of months, and than it happened and it was bad so, so painful that I had enough it was time for the surgery. So I went in and they gave me a spinal tap and removed all of the roots. Than once again they left it open to be packed 2-3 times a day. My husband did most of it, b/c he really didn’t feel like driving me to the DRs office or the ER everyday…it too 2-3 weeks for it to completely heal and a little longer for me to feel 100% better…I’m so glad the I had the surgery and even more happy that it hasn’t come back…thanks for reading Debra
Date: December 26, 2007
StoryWelcome to the club! I am a 38 yr old man who had his first flare up in college at around 21. I went on a bumpy jeep ride to the beach and the next day, my tail bone was killing me. By that evening I could bearely walk. The next evening my fraternity brothers were laughing at me and saying i was walking like I had a broomstick up my arse. Well, it felt like it. By the next day, it had drained through about a one inch sinus along my crack that originated from a sub-dermal resivour directly above my tailbone. I was shocked and thought I had some freaky infection or worse, some spinal defect.
I put up with this for about a year and never told a soul about it. It seemed to go away for about a decade or so and then in my early thirties, the GD thing came back. this time it had a different drainage sinus that was shorter and above the initial one. it was also more of a blister than an open wound and the blister was about the size of a marble. The whole thing reminded me of an underground volcano that blows intermittently and changes magma tunnels.
By now, I was used to the drama and just figured I'd deal with it as I always had. The thing is that now that I have a desk job and a monthly commute of about three hours each way to p/u the kids for visitation, and as a result, the flare ups have been ever increasing to the frequency of about once a month! I couldn't live with this any more. the pain was making me irascible and the the constant weeping of this wound was intolerable and horrid.
A month and a half ago I went to a dermatologist who told me it was a Pilonidal cyst and it needed to be extracted. I said fine and had a "drive-through" surgery with local anesthesia and she extracted, coderezed, and sewed me up. All was fine for about three weeks and it started leaking. She said she had noticed some old scar tissue beneath where she was prepared to extract and that I will have to have a real surgen go in theere and really bore me out thoroughly. Well, that is where i am at this point. I have surgery scheduled for 9AM tomorrow morning. I have elected to have the open wound surgery and hopefully this does the trick. I am a little frightened of having a bayonet wound on my backside for the next eight weeks but at this point, anything is better than dealing with this monthly agony. God bless all of you brothers and sisters with the agony of this loathsome dis-ease. I will follow up with my surgery results.
Date: December 26, 2007
StoryHi I'm Joshua. I'm a 32 year-old living in California. Like many of you I discoverd my Pilonidal Abscess by first thinking I had either bruised my tailbone, or pulled a muscle in my back. Because I was a college student at the time (19) I did not have health insurance, so I tried asprin, icing, etc...to aleviate the pain. Obviously none of that worked. Sitting in class one night I suddenly noticed the pain was gone. But I felt liquid back there and thought - oh shit - my worst nightmare... I crapped my pants while at school! I left class and went to the restroom. My cyst had burst, leaving my boxers and pants a mess. Yeah it was gross. Blood and puss. Not fun. But I cleaned up as best I could, (class was over by then) explained what had happend to my teacher via e-mail...and headed home. Honestly I was so damn happy to have the pain gone I wasn't really that scared. I started doing research but back then the internet wasn't happening too much yet - luckily my mom is a nurse. She knew right away what it was and after a doctors visit I was prescribed anti-biotics and told about surgical options - none of which I could afford.
Over the past 13 years I have had 3 flare-ups total. Each time they have felt a little less severe. The past two times I have been able to apply pressure and force fluid out of the abscess - since there is now a soft spot from the first time it burst. It is pretty painful to do - but a hot shower helped.
I'm not one for surgery, and since it's been nearly 5 years since my last flare up I'm taking a wait-and-see approach. I will say this though, hygine and overall good health are super important for us. Try to get some exercise, avoid shitfood, lay off the hard liquor - and for gods sake quit smoking if you do. All of this plays a role in how our bodies deal with infection.
Thanks very much to the folks at pilonidal.org for so much good information and moral support. I wish such a place existed when I was first diagnosed. Keep clean, and good luck! - J
Date: December 24, 2007
StoryHello, My name is Chris. I had my Pilonidal Cyst
Surgery about a year and a half ago. I am 27 now. At first I thought I had broken my tailbone but I was told it was a Pilonidal Cyst. I had been to Carowinds Amusement Park and roge all the ride and then the next day i drove six hours to work the summer at a Christian Camp. While I was driving it became harder and harder to sit and when i finally got there i realized there was a lump on my back the size of a baseball so i throught it would go down so i was give a "Butt Pillow" to sit on and then finally went to the doctor. I told him i had broken my tail bone and the Dr. told me it was a Pilonidal Cyst he game me some pills a told me to take one before i left so i did by the time I got back to Camp which was about 30 min. away and felt it release and so I went to the restroom to see what happened and it busted in my underwear. I was told to come back to the Dr. In 3 days so i did my orginal Dr. was of another one would be in to see me. A attractive women Dr. came in and said that she would be lance of so she numbed it and drew 2 large tube of fluid and blood and told me it may comeback and i will need to get surgery that is the only way to completely get rid of them.
I was 22 then so i lived with it till about the age of 25 and could not stand the pain and flare ups anymore so i went in to have surgery and the inision is about 4 inch long and about as deep. My Dr. Asked my Mom if she knew anything about wet to dry packing. My wound was left open and was to heal from the inside out like a "war wound". So i would get wet gauze packed in the wound twice a day and that was the most pain i have ever felt in my life was when it had to be pulled out. I was off of work for about 2 1/2 weeks. It has healed but i still get drainage alot and it seems to be worse when i get nervious? Kind of weird I know. Thank You for letting me tell my STORY. Good Luck to you all you will be in my prayers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Chris W.
Date: December 22, 2007
StoryI have had 4 surgeries over a span of two years. The first surgery was an open wound style and it took 6 months to close. 6 months later it came open again. I saw a plastic surgeon after that because the silver nitrate sticks did not do the job. I had my last three surgeries in 6 months. I am still currently having problems with bleeding and infection. I am trying to get a different opinion...if anyone knows a good doctor for this disease let me know.
Kristie
Date: December 20, 2007
StoryI am a 29 year old woman...I know, we are few and far between I am told. I have had this disease for years now. I first had problems in my early 20's. When I was 22, I had surgery and it was left open. It took me a couple of weeks to get mobile again, followed by more weeks to heal completely and feel 100% again.
Despite being told that it was likely that I had been "cured" I began having problems again. The first flare up - about 2 years ago - was treated with a round of anti-biotics. It was never completely 'ok' but I was careful.
Now, for the few few months, I have been having occasional pain when moving while sitting or laying down. Any pressure isn't good.
So, I have made an appt with my doctor for just after the holidays. I really hope I don't need surgery again...it was awful the first time. Especially when you have to explain why you need surgery to your employer or coworkers who ask. As a woman, it isn't fun saying you have a hairy butt and a hair that was ingrown is infected...
Date: December 19, 2007
StoryI have been battling this for 4 years with two flare ups total. I just had surgery on Monday the 17th and they closed it up. I just hope everything turns out ok and it heals correctly. So far I haven't been in too much pain, I'm just paranoid that the incision will come open and I will have to get it packed. I've been in bed for three days and plan on being here for at least 4 more.
Date: December 19, 2007
StoryI am a 18 year old man who had this disease the weekend before thanksgiving. It all started when i got home from the 2 hour drive from my college to my home. I didn't feel any pain until i sat down at home. I realized that i could not sit on my tail bone. I did not think much of it and the next day was opening day for deer season. That is when i noticed it hurt to sit no matter what position i was in. Well i went back to the truck and fell asleep and when i woke up my tail bone really hurt and i had a fever and felt sick. Over night i woke up and found out that my tail bone area was red and tender and had pain the the point where anything i did really hurt.
I told my parents about it and they thought it was a boil. Well i found out after reading that it is technically a boil but its call a pilonidal cyst. I had to go back to college the Monday and Tuesday before thanksgiving. The drive back was uncomfortable and Sunday night the cyst drained and i spent the morning hours draining the cyst. It definitely didn't smell to great. I did not fully drain it so it still hurt a little to lean back and sit on it.
Well when i drove back on Tuesday the fluid that was still in there burst through the skin and it was all over my cloths and there was nothing i could do. I read up on the cyst and i basically new what it was so when i went to the doctor i told them that i think i have a cyst on my tail bone and it turned out i was right. I was really worried because i read stories about how many surgeries people were having and how much pain they had to go through so i thought it would never go away.
Well i ended up going with the surgery anyways and i had the open wound surgery. I just had it yesterday and today i had my first change with the gauze. It was uncomfortable but not really painful to the point of crying. I really do not have much pain i can sit but i have to sit forward. My cut was 2 inches long and about that deep. I do not know why i have pain. I know i didn't have the long lasting anesthetics. My advice is not to wait as soon as you have tail bone pain get it checked and have surgery right away. They way the infection doesn't tunnel and make the incision bigger. Also you should get a open wound cuz most of the horror stories you read are from closed wound. Hope this helps
Date: December 18, 2007
StoryI'm going in today to get the verdict and see if I will be having my 4th (or 5th, I lose track) session under the knife for this condition. After the last surgery, 4-5 years ago, I've had a flare up every 6-12 months, but it drained on it's own through a sinus I developed after the the last cut healed. It doesn't look like that's going to be the case this time, though.
My surgical experiences have varied, from no pain the first time to 45 minutes of nonstop screaming. I guess it all depends on the doctor. The most "interesting" one was my last one, which I couldn't get numb all the way. The doctor insisted that "it can't hurt THAT bad", and I think I was pretty much maxed out on the amount of Demoral I could take.
When it was all done & the wound dressed, I was asked if I could stand on my own. I could, so I was told to get dressed and everyone left the room. As I stood up, I noticed a sound like a water faucet running in the room, I thought that maybe one of the doctors had left it on after washing their hands before they left. Well, I looked around but didn't see one, then I happened to look down. There I saw a 3-4' wide pool of blood rapidly growing around my feet. I hit the "red" button to call them back in, they got me on the table and cauterized the cut. They were starting to talk of a transfusion, but fortunately, I didn't have to have one.
With no insurance, I have to go to a state-run hospital, so it's luck-of-the-draw as to how
knowledgeable the surgeon will be, and how long will it take to get something done.
Also, I'm an industrial construction worker. Having to miss two or more weeks of work, whether with a doctor's excuse or not, is a sure fire way to end up on the next lay-off list. Of course, this only compounds the problem.
Very informative site, I wish I had found it sooner. I'm going to look into going to a local clinic and paying cash this time. Thank you for all the info.
Date: December 16, 2007
StoryMy daughter's problem started this summer(07). In June she was
wrestling with her brother and the next day her tail bone was killing her. We thought she injured it some how. She was in so much pain in the weeks to follow that she could barely walk to the bathroom. All of a sudden it released, but I could not tell where it was coming from. I have never in my life seen so much puss and blood. I thought she would need a blood transfusion. I took her to the doctor who put her on antibiotics and it seemed to back off some. When it came back 2 month later, it was back with a vengence. She just had surgery on December 5th 2007, and so far it's o.k. My problem is that they left a 3 inch long 2 inch deep hole and they want me to pack it. I can do it, it's just that it hurts her and she almost makes it impossible for me to do a good job. Any advice on painfree dressing change? Scared Mom.
Date: December 13, 2007
StoryWhen I was 13 years old, I started having a lot of pain in the tail bone region especially when I was up and moving a lot. Then I started noticing the drainage on my panties. I kept telling my parents that I was hurting - I thought maybe my tail bone was out of place or something, but my parents are the kind that don't take you to the doctor until you're dying. So it was ignored. Finally the pain got so bad that I insisted that something was wrong.
Mom looked at it and knew that something was wrong, so I went to see a surgeon the next day and I had surgery the following day. It had gotten so bad by that time. I spent three days in the hospital. Then four months later i had to have surgery again because it was not healing. The scars I have are tremendous from the surgeries. Well here I am 13 years later and in the past several days, it has become painful and has been draining a little. I went to see my family doctor today and he started me on a course of antibiotics and recommended that I sit in a warm bath once a day. If it doesn't get better within a few days, I am to call him back and he will then refer me to a surgeon. I sure hope this antibiotic clears it up!!!
Date: December 13, 2007
StoryIn my late teen years I had surgery to drain a Pilonidal Cyst, the procedure involved cutting away what I assume was infected tissue at the base of my sping and the wound was then left open and then packed with gauze leaving it to heal. I recall being in isolation ward and hospitalized for about 10 days.
I am a 51 year old female and have had a lot of problems over the past few years with back pain and doctor feels that it may be a result of the large scar tissue from the surgery. Wondering if there is anyone having experienced problems from scar tissue.
Date: December 13, 2007
StoryI am a 35 year old female who has been living with this problem for 15 years. The first cyst appeared just after turning 20 and returning from a long road trip. I had no idea what it was and was too busy with college to care. It became infected and grew to the size of a baseball. Naturally, I finally bit the bullet and went to the doctors who immediately sent me to a surgeon.
The cyst was severely infected and had to be lanced. I let it get so bad that the surgeon said I had no choice but to have the surgery immediately. He said there was a 90% chance of success.
This was not my experience. I was out of school and work for 6 weeks and within a year the cyst returned. For the next 5 years, I had to go to the ER for lancing 6 times. Within the last 6 years, I've managed to keep the flare up under control, but it recently became inflamed again and this time, I couldn't temper the issue with home care treatments. I've been on antibiotics for a week and a half and there has been very little change.
I was sent to a surgeon last week who told me he refuses to perform the surgery because he believes it has less than a 1% success rate. He mentioned that there is another surgical procedure they now call the grenade. Based on his description, they remove all muscle and insides down to the pelvic bone, leaving a gaping hole. He did tell me that he has had 6 cases of 100% success with patients who have pursued Laser Hair Removal. I am going to give this a shot and will report back
results to all of you.
While I understand that the surgical procedure has been helpful
for some, if I had it to do all over, I would not choose this route.
I do not believe the surgery has any chance for success.
Please consider your options very carefully. Most people who have had the surgery experience relief for a few years and then find themselves facing a recurrence. Good luck to all of you. I am putting my money on Laser Hair Removal and will be documenting the entire experience.
Date: December 13, 2007
StoryI first got this disease when I was 14 years old. At first my parents and I just thought it was a boil. We honestly did not know what to do. It wasn't very painful, but it was quite annoying. I had just gone to the hospital to see my cousin, and when I came home, it busted. I had to call my mom because my dad was very sensitive about seeing my butt. She rushed home from work, and cleaned it up. It was not a great thing to say the least, but at least I could sit. We didn't really inquire much about it.
Two months ago, around the end of October, it appeared again. I had just turned 18, and thought oh, it's a staph infection [because that's what my mom thought and presumed it was.] That was not the case. Within a day it had grown, and I was in severe pain. My mom set me up a doctor's appointment that coming Wednesday. That Tuesday before, I had taken so many pain killers I could not take any more. I don't live with my parents anymore, so I called my mom. She took me to the emergency room to get it taken care of. As I lay there on the bed, the pain got worse. I was in tears... and i am not a weakling for pain. Finally the doctor came in and opened it up. The pain IMMEDIATELY went away. I stopped crying.
Then they told my mom what was wrong with me and said that my doctor visit must happen anyways,
despite the fact i was at the emergency room the night before. I stayed with my mom that night at her house [they had given me a shot of some heavy freakin pain killer, and it made me pass out.] I went to the doctor and he signed me up with a surgeon. I went to the surgeon two weeks later, and he told me what was really wrong with me. I found out, at 18 years old, that I'm diseased. I mean, I have bronchitis, but this, this wasn't all kosher to me. He told me I needed surgery. He also informed me that this is also hereditary. I freaked. I had a teacher die from the amnesia. I didn't want to be put under. . . . .
I'm scared. I still have not set up my surgery. It occured again a month later, but not as bad. We told the doctor, and her said it must have not gotten completely out. I'm totally not liking the whole 'I am gonna be put under the knife thing' but I need some advice. I've been told this whole thing can change my life. It's killing my immune system, I do know this. My bronchitis has kicked up many more times than it used to. I really need to understand this better.. but I'm still scared of going under the knife. I honestly don't know what to do.
Date: December 12, 2007
StoryMy 16yr old daughter developed a pilonial sinus in feb last year, surgeon advised to wait till she had completed year 12 before the operation. Saw surgeon in september and told that no she could wait till december without a problem even though she was in constant pain. I asked the doctor what the lump quite a bit lower from the hole was to be told nothing.
Situation became more urgent as this lump grew and grew she was not without a day and being in terrible pain this other lump ended up becoming pussy and of course I could not help myself and I touched this lump only to see a hair that I then went to remove with tweesers and low and behold the hair was about 1ft long, the pilonial sinus had tunnelled and was coming out.
Sought another opinion from another surgeon and after many lancings of the area to relieve the pressure the operation was done on 8/12/06 . Operation went well but recovery was very very slow. Daily dressing at the doctors for 4 months, and then daily dressings at home for a further 4 months and numerous visits to surgeon to be told to try this and try that, but nothing really worked and to be told that this is the longest pilonial sinus that he has seen. Thankfully in August 07 wound healed up. Being restricted to any activities she has put on weight. After waiting 2 months after final healing she was about to start exercise to find that a hole formed after she attended a concert, and since then the hole just got bigger and bigger. We are now at our wits end not knowing what we can do to heal this bloody thing. My daughter is now 18 and very depressed, if anyone can give any advise that would be greatly appreciated.
Date: December 11, 2007
StoryMy name is AJ, I am a 26-yr old female who has been battling this monster since Summer 2001. My pilonidal cyst manifested itself on a study-abroad trip to Europe when I was 20 years old.
I just completed my fifth surgery on the area eight weeks ago. I have used every method of healing over the years: excision and packing with home health care, stitches, silver nitrate, colorectal surgeons, wound care specialists, plastic surgeons, the KCI "Freedom," and most recently debridment and the KCI Wound Vac the "Activac." I am hoping that this is the end of a long and painful journey.
I stopped using the VAC recently because my skin was too itchy and irritated to bear. I have begun to pack again and am hoping (although not optimistic) that the wound will be healed by Christmas - it would be a wonderful gift. (paragraph break)
One of the reasons I took the VAC off with about an inch to go was because my insurance has stopped covering the VAC because the cost exceeds my medical device allowance, and it's an expensive option. Just a word to those out there: the VAC sounded like a miracle cure to me, and it has substantially closed my wound, but consider carefully before you choose it. In this latest experience, I was confined to my home for seven and a half weeks before removing the VAC. Despite what my doctors told me, I could not drive. The pain this time was much worse than any of my other surgeries, including my first VAC experience. Even today, when I go out VAC-less, the pain is intense. Operation of the VAC is also difficult. It is tremendously hard to get a good seal, and sometimes even though I had a seal with no visible leaks, the VAC would emit air under all of the packing or make loud leaking noises even though the pressure was maintained and stable. This resulted in many sleepless nights for my husband and I.
Now I have turned to packing and using a wound gel my newest surgeon recommended. I would appreciate any tips on OTC pain meds - I have tried Advil, Aleve, Tylenol, and Motrin - nothing works. I also want to say thank you for having this site, because even today I have learned a lot, and I wish I had searched for this forum when I was first diagnosed. :) Thanks!
Date: December 10, 2007
StoryHi, I have had this problem since my freshman year of high school. I'm a female who just turned 18. That year I had gotten really bad pain by my tailbone. My doctor drained and packed it the cyst. We were at the doctors everyday for a week and a half. My
sophomore year it came back and I had a surgeon remove it and close the area with
stitches. When it came back in my junior year, I was in so much pain, so my doctor sent me straight to the surgon, and he immediatley put me in the hospital to have it removed. He packed it and we had to have homehealth care come for like two weeks.
When I was having pains again at the beginning of the summer in 2007., I went back to the
surgeon and he sent me to a plastic surgeon to have a major surgery. He did the X - Y flap and it was supposed to make the cysts never come back. I had 200 stitches in my back and a drain tube for like 3 days. I thought everything was done and I would never have to deal with it again. Until two weeks before thanksgiving, when it came back and the doctors had to drain and pack it again. As of right now, my tailbone has swelled up again and is still draining. But I am not able to do anything until Christmas break as I have missed enough school. I have been sent to every specialist and I am now seeing a GI doctor and will
probably see the surgeon again in a few weeks. Anyone have any advise?
Date: December 09, 2007
StoryMy name is Jessi and I too have battled this ugly thing. I am a married mother of four (soon to be five) and I am 27 years old. My story actually started after going in the mountain in my friends truck. There were lots of bumps and we were going fast, mainly to have fun. However he had a hammer on the seat of his truck and I thought that I had landed on it and maybe broke my tailbone because the next day it started to hurt. I was 14.
It got to the point where I couldn't move and I was literally crouched over while walking. I couldn't handle it anymore. I laid on my friends bed to rest and a bunch of our rowdier friends had stopped by, and began trying to wrestle with me. I told them to stop because my butt had hurt (this of course was a joke to them) and one of them kicked me. I immediatly went into shock from the burst of the toxins and cannot remember the rest of the evening at all. I didn't know what had happened but when I woke up the next morning, I felt so much better, I didn't even care that I had almost died. (Neither did my friends or they would have at least called my father).
Well everything seemed to be fine until I was 16 and pregnant with my first child. Then it happened again. It was so bad that all I could do was swallow pain killers and lay on the couch. I still didn't know what might be going on. A few days later(while still on the couch)it 'popped' as I would say. It felt so much better that I could have done cartwheels. I don't think that I ever told my doctor at the time because of embarassment, so I just lived with it.
It started more frequently after that. About every two to three months. I could barely make it to the bathroom, my son stayed in his playpen for days with no proper attention. I changed him like every four hours or so. You probably don't understand, I was a great mother (yes at 16). My son was very well taken care of all of the time, I just couldn't move. I was in so much pain, I would just lay there and cry for hours. I finally got the courage to tell someone. I told them that it was so bad that it interfered with my parenting ability and couldn't take it anymore, and the only reason I did say anything was because of my son. They didn't take me seriously until after my daughter was born.
I don't know if it was because I lived in a small town, or what. I finally had it removed in 1998, three months after my second child. I was so glad that I did. 10 years now without any problems. However, I have heard that it has a good sized risk of coming back. The scar is a little
embarrassing but it is a small price to pay for my childrens well being. I wish the best to all of you out there suffering. If you have any problems with your insurance and it interferes with your ability to lead a normal life, look further. There is hope.
Date: December 07, 2007
StoryI have been battling pilonidal disease for fourteen years- literally half my life. When I was fourteen, I noticed some fluid on my panties, and after a while, I asked my mom to check it out, and she was horrified. She thought I had some rare skin cancer or something. We went to our GP, who is a general surgeon, who told us what was wrong, and lanced it, but told me it would have to be surgically removed. Eventually, I had surgery to remove it, but unfortunately, about two years later, another
abscess had developed, so we went back, it was lanced a few times (due to my school schedule, we put off surgery until summer).
It came back again a year later, and I switched surgeons after doing some reading and learning that one of the treatments (loading up on antibiotics) was not necessarily the best (and to this day, I have some immunity issues that I think are the result of this). Unfortunately, after the third surgery, it came back, and I had a fourth surgery in 1999. Until about 2003, my condition was dormant. And then, I started having some bleeding, but I would clean the area, put triple antibiotic ointment on it, and bandaging it, and it would go away. I didn't have many flare-ups until 2006. Then, I started having more, maybe one every three months or so, but they cleared up every time.
This year, however, has been horrible, and I just noticed last night, after a lot of blood was expressed from the area, that I have a new
abscess, which is very upsetting because I'm starting a Master's program in January and don't have the
ability to have any sort of major surgery until May at the earliest. When I first started having this trouble, fourteen years ago, I was told my only options were lancing and excision, and repeating this over and over. I am glad to have learned of the Bascom procedure as well as flap procedures because these were the sort of things I wanted done, and I was always told that there was no such protocol. Of course, I also didn't know I should be seeing a C/R surgeon, so I'm hoping the results will be better, and that I will find one who can do these sorts of procedures so that I can actually believe that one day I won't have this embarrassing problem again.
Date: December 06, 2007
StoryMy name is Andy, I'm a 28 year old male. It started with a discomfort in the natal cleft area and I remember looking at it and noticing two or three red spots and thinking "what the hell are those?"
I knew something was really wrong when I had some trouble sitting one day and reached down to find two egg-sized swellings on either side of my tailbone. I remember thinking "oh crap, that's an infection." A little googling brought up the word "pilonidal", and I realized that's probably what I had.
Two days later, the sinus was in full effect, directly on the midline of the natal cleft, and I was able to express some pus from it by pressing around the swellings. Nice, huh? It was at that point that I knew EXACTLY what I had. Unfortunately, no colorectal place would see me without a referral, so I called my GP, who was unable to see me right away. Since the pain was getting worse and I knew I had an abscess, I went to the ER where they "lanced" it. I say "lanced" because it was more of an exploratory digging. The abscess wasn't as close to the surface as the ER doc thought, and he sort of had to "reverse engineer" the sinus to find the abscess which was found to be just off the midline on the right side.
After the Doctor "hit pay dirt", I was packed and discharged. Since the abscess had been drained, the doctor decided not to put me on antibiotics initially. This is a pretty standard decision where abscesses are involved because the body has already walled them off. I was given a standard piece of paper that said that pilonidal cysts were large, irritated hair follicles or something like that.
The next day at work I began to feel feverish at around noon. When I checked my temperature, it registered between 94-95 degrees, so I didn't worry too much; however, after going home that evening, I took a nap and woke up with a fever of 102.4. Glancing at the sheet, I found that it instructed me to return to the ER immediately if I developed a fever, which I did. I would encourage ANYONE who has a pilonidal lanced to monitor yourself closely for the next few days and to call your doctor's office immediately if you have a fever. The ER placed me on IV antibiotics and saline and iboprofen/tylenol. Eventually, the fever broke, and an appointment was made with the surgeon on call for the next morning for me to see him.
By the next morning, the fever had not returned, so the surgeon on call (who specializes in another type of surgery) decided instead to refer me to a colorectal specialist to ensure that I had the best possible treatment.
Upon examination, the colorectal specialist informed me that he was still able to express some sebaceous material from the cyst, and we talked about the likelihood of recurrence. I told him that I would much rather endure some more discomfort than to have this recur, and he informed me that surgeries were the best way to keep recurrence from happening. Rather than an
aggressive excision, I chose a medium-level excision, and a roughly two-inch by one-inch area of skin was removed from the area around and to the right of my natal cleft. The tissue to the left was undercut, and then sewn shut over the excision site. The procedure was quick and outpatient, and I have experienced very little pain in the healing process, though I was required to sponge-bathe myself for 72 hours following the procedure to keep the dressing dry.
As a side note, all of the doctors I saw had something a bit different to say about pilonidal disease, so the jury is definitely still out on what causes them, though the consensus is that it is the combination of a naturally weak area of skin compounded by the even weaker dimples which allow hair into the skin. The colorectal doctor described hair like porcupine quills if it goes in the right way. When going in root-first, the scales on the hair act like barbs keeping the hair from coming out naturally and allowing it to slowly work its way into and beneath the skin where it collects. I was informed that, often, there is a large quantity of hair that doesn't even belong to the sufferer lending credence to the theory that pilonidals are not follicles at all but rather areas that just happen to trap hair and foreign material and compact it into the body.
Date: December 06, 2007
StoryHello everyone. My name is Bryan and I am a 30 yr old from NY. When I was a Junior in high school (1994) I endured a week of unbearable pain (Worst pain in my life) by my tailbone. Exploring the area I noticed that there was a rather LARGE bump to the left side of the tailbone. It was extremely painful to sit, walk, and even to just lay in bed. At the time, I was training for the
upcoming football season so figured I had just bruised the area from a fall or working out. No Big Deal!
After a few days of resting, the pain subsided and I continued on with my daily activities. As for the LARGE bump, it was still there. I really didn't think anything of it since I was just happy the pain was gone.
Life went on with my new friend. It never bothered me but I always new it was there (sitting to long in one position). I went on to college, graduated, entered the real world, and currently work as a firefighter. About a year ago (2006), I noticed some small spots of blood on my underwear. I had no idea what the heck this was from. I felt no pain, my friend was still there, and everything seemed normal (as I knew it). The blood continued to show up here and there with some yellowish fluid mixed in.
I'm not going to lie, I was starting to get a little nervous as its not normal for fluid to be
coming from that area. After some self examining, I noticed if I pressed on my friend, I could feel more fluid come out. The question was FROM WHERE! Embarrassed, I needed to ask someone to take a look. I recruited my DAD since mom had seen enough of my butt when I was a baby. He noticed 3 small holes in the area
in-between the tailbone and the anus. I pressed on my friend again and sure enough the fluid was
coming from the holes.
With that, Dad left and I was a little nervous. Ok DOWN RIGHT SCARED! Why in the world do I have 4 holes when there is only supposed to be one back there?
I went to the internet and typed in every possible problem. Cyst on tailbone, fluid from anus, holes below tailbone, anything I could think of. Magically, this site appeared!! I began reading and was amazed to see that there was an explanation for what I was experiencing. BIG SIGH OF RELIEF!
Most of all, I learned my friends real name was Pilonidal Cyst (not Large Bump) and his 3 buddies were from the related Sinus family (not Holes). During the next few weeks, I would give my friend a little push (daily) draining the fluid that was there. Eventually the fluid stopped and my buddy of 12 years lost some weight. So much so, I hardly even knew he was there. About a month later, I felt some pain starting to flare up again like when I was back in high school. LUCKILY, it was moderate and with some hot compresses was not severe or long lasting (2-3 days). I guess that was Pilonidal's way of telling me he's still there and will never leave me. Checking up on him again, I noticed there were some hairs that were growing out from 2 of the sinuses. I carefully took them out (NOT PAINFUL AT ALL) and cleaned the area.
After about a month or so I checked up on it again and noticed there were some more hairs present. I removed them too.
For those asking why I never went to a doctor, the answer is simple. At First (1994), I thought it was just a bruise and those usually are painful and go away on their own. Between 1994 and 2006 I never had any flare ups or problems. In 2006 I was tempted to go to the doctor but I came across this site first. This site was very informative and so were other medical sites with info on Pilonidal Cysts. Quite honestly, it seems most doctors don't even know what this is! After reading the stories about surgeries and reoccurances my thought was IF IT'S NOT BROKE DON'T FIX IT! I lived most of my life with my friend and figured let him do what comes naturally. Not everyone is blessed to have a friend as good as mine though. The sinuses were a major HELP in being able to relieve the buildup of fluid.
As for my new daily routine of dealing with this disease (I only say that word because I don't think it will ever permanently go away), I keep the area especially clean and remove hairs as they come.
Some people have severe cases with chronic pain and flare ups, while others don't even know they are there. Read through this site, do some research and learn as much as possible about the Pilonidal Cyst. BE INFORMED! If need be, see a Doctor and get professional opinions. When the doctor doesn't know what it is and never heard of a Pilonidal Cyst before, FIND ANOTHER DOCTOR! I hope my story was able to shed alittle light and people were able to relate. Its something you can live with and deal with so don't be afraid! Happy Holidays to all and a Healthy New Year. Any questions don't hesitate to ask. You can email me at xorrim@yahoo.com.
Date: December 05, 2007
StoryIn 7th grade I fell at school on the steps and supposedly cracked my tailbone. Two years later, around mid-October, I felt a lot of pain when I was sitting in certain desks at school. I also noticed a yellow-y discharge every now and then at the top of my underwear. I told my mom about this and a week later I went to Dr. Harris to see what was wrong. He told my I had a pilonidal cyst on my tailbone, more or less, with two openings. But because I was on antibiotics from acne medicines, it went right into a draining process and was barely, if at all, infected.
I had a surgery the following January on the 22nd. My incision was about 4 inches long and almost 3 inches deep; a lot deeper than my surgeon had expected. Oddly though, I never took painkillers or anything afterwards except for the few they gave me when I came out of the anesthesia. My whole lower back area had a numb sensation (such as when you get your mouth numb at the dentist) which I still have. I was told it can last for about a year.
And I quickly learned how almost every little movement is connected to your tailbone; even coughing or sneezing hurt. It took about 2 weeks for me to be able to sit again and 2 months for me to be able to start up dance once more. Now, about a week ago (Nov. 29th), I noticed the discharge starting again. I again told my mom and she looked at my scar. Sure enough another two holes had formed slightly under the old scar. I went back to a new doctor and was told another surgery is necessary. On Monday the 10th, I’m going back in for my second surgery.
Date: December 05, 2007
StoryHi guys, Dori from Baltimore. Well, I have been writing every now and again since my son had surgery with Tom and John Bascom. In case you didn't know Dr. John Bascom is the one doctor in America, and possibly in the world who knows the most about this awful disease. My son had 7 surgeries and 2 1/2 years of doctors, some with John Hopkins' training, others that were highly recommended, well known doctors. I am not stating that these doctors did anything wrong at all, they all tried to help my son. But there are a few different things that the
Bascom's do in their procedure that makes their surgeries work.
Please, if you have already had 2 or more surgeries, don't wait, use this web-site, and find a doctor who knows the Bascom technique. I was referred to the Bascom's by someone who's son had 7 surgeries as well, and we both flew to Oregon for the surgery, and we, (all 4 of us) will always be
grateful. Find a doctor who will listen to you, we were lucky to find a great surgeon for follow up care, who has also done a few minor related surgeries on my son, Dr Zachary Martin at Good Samaritan Hospital in Baltimore. He wants to see my son every week, and he and Drs. Bascom correspond they are documenting my son's case.
My son would not wear a vac after surgery with Drs. Bascom and he wore a drain, (not reccomended) the drain was inefficient, which caused the blood to pool, which caused an
abscess. I pointed the spot out to Dr Martin, one month after
surgery, and the spot was tiny, but he felt it and drained it, and found infection, and did surgery the next week. I, in all my 2 years of wound care at area hospitals have never had Doctors listen and react in my son's best of interest like that. That is what a good doctor does, listens. The Bascoms' have called me at home to check on James, they have a 97% success rate, (it might be higher), they
recommended that James wear the Vac, but he wouldn't, so that is why he needed another surgery after we left Oregon, they are not used to their patients having any problems after surgery.
I feel that this is our last surgey, except we may need to close this small wound that is doing well now, thanks to Dr Martin. Oh, by the way, I just spoke with Dr John Bascom today, he wanted to know how James was, what a wonderful man to take time out of his busy day, to check on my son almost 3 months after surgery. Well, that's all for now. God bless, and remember after 2 surgeries you have got to find a doctor who knows the Bascom's procedure, or
you'll be playing the same old song and dance for a long time. By for now, Dori
Date: December 05, 2007
StoryHi, I'm an 18 year old from the south suburbs of Chicago. About a week before Thanksgiving break (I attend Hampton University) my tailbone or my coccyx (which is what I thought it was) began hurting. I have fallen on my butt and it hurt like this before, so I figured it must have been from sitting on my bed against the wall and doing my homework on my laptop. I decided to sit in a chair and thought that the pain would go away for a few days. However, this did not occur, and the pain got worse. I came home for Thanksgiving on the 21st and by the 23rd (the point where I couldn't sit down to drive anymore) my mom said we were going to the ER instead of the movies. I had her take a look at it before we left and it just looked like a raised bump at the top of my butt crack.
We arrived, and after I was escorted into my room and changed , the doctor took a look at it (I felt so exposed, never had to wear a hospital gown before) and told me it was a pilonidal
abscess. Then he said he would have to perform surgery? Surgery! I was scared! Lol, however, I wasn't too keen on bearing with the pain so I went on without a word. He numbed the area first, which to me was the most painful part of the whole process. We then waited, he lanced it (never felt it), and put a whole bunch of pressure on it (which kind of hurt, but not as bad as the numbing). I didn't cry, so it wasn't bad, then they cleaned it and patched it up. I took pictures after they numbed it and after the surgery so I could see it. It's not big. Only a half by quarter centimeter. So I'm going to pray for you people who have those big ones! Sorry!
Date: December 05, 2007
StoryHi, I am a 32 year old female, and have had tailbone pain on and off for much of my life. I also have severe lower back pain, and SI joint discomfort. Over 2 years ago, I endured an excruciatingly painful labor and delivery... and am now convinced I was having trouble with this disease. Last week, my tailbone was on fire, and I didn't know what to do. I just waited it out, and found this website. 3 or 4 days after the tailbone pain started, my husband was able to push pus out of a sinus in my natal cleft. He saw 2 holes there, so I am pretty sure I have been dealing with this for a long time. I have never had a bump or boil on my tailbone... only internal pain.
After reading this site, I made appointments with 2 different colon/r doctors in Chicago, (one of whom is in the Hall of Fame), at 2 different hospitals, and will follow up with intel. I also have a rather large mole right next to one of the sinuses, and have concerns about melanoma. IN FACT, two months ago, I had a Dermatologist look closely at the mole in my natal cleft, and she said it was fine. It would have been nice if she would have noticed the hole right next to it. Sigh. Thanks to Sasha for this awesome site. I am worried because of my age, and now, looking back, I remember times of slight, foul smelling discharge (but it went away, so I thought it was just bacteria or me not cleaning enough back there) and times of severe pain. I wish I had put two and two together EARLIER. I think I always thought I was sitting too long on it, or had fallen on it. Yikes. For the record, I do not have a hairy bum, and have fair skin and blonde hair.
Date: December 04, 2007
StoryHello! I am a 26 year old female who is currently
recuperating from a second, yes I said second, cystectomy. The first surgery was in November of 2002, which the doctor had removed 3 small cysts from my tailbone. It took my six months to fully recuperate from that surgery, and was hopefully never to have to go back again. Well, my luck ran out in the begining of October of this year. I started to get the painful symptoms of a cyst again, and made an appointment right away to see the surgeon. He did lance it, as it became infected, and told me to come back in 3 weeks. Well, when I went for my follow up is when he told me it has to come out. My surgery was on November 28th, I had a spinal done so that I wouldn't have the awful effects of anesthea. So, I am day 6 of recovery, and feel okay. I have been taking my pain pills at night, as I have now returned to work. I think I should have taken more time off, but I will be okay. The doctor believes that he has gotten all of the cyst and it's fingers and that it should never return again. So, fingers crossed! Hopefully this is the last surgery! I don't know if I could handle another one.
Date: December 04, 2007
StoryMy story starts about 9 years ago when I had a Rugby accident, which resulted in me being studded by an opposition player. At the time I had bruising all over my back right down to my tail-bone. I noticed a lump, showed the coach who said it was probably a blister and not to worry about it. So I went on with my life, only noticing the lump from time-to-time.
a while ago I noticed a little hole in my back, just above my tail bone, near the lump. Sometimes it seemed to be oozing liquid that smelled like sweat. It didn't hurt, so I thought it was normal and that the liquid probably was regular sweat - I am a particularly hairy guy and my job requires me to carry a very heavy bag when on call, so it kind of made sense it was sweat.
One week I had a job where I was in traffic jams for about 5 hours a day and I felt I was putting a lot of pressure on the area when sitting. A day after the job finished, I noticed the area was swelling. Over the weekend it was very painful and partially burst one night with loads of blood. On the monday morning I went to the doctors.
I wasn't told what it was (I still haven't been told), but was referred to the A&E department at hospital for lancing.
I am pretty sure that I have a Pilonidal Cyst and Sinus, but my doctor doesn't seem to really care and the surgeon didn't tell me anything - in fact they practically did the operation in the hallway of A&E - it seemed very disorganised.
The operation was OK - the most painful part is probably the local injections - I had 5 at equal distances around the area, all of which I felt. When the surgeon made the incisions, I felt a scratching on my skin, but no real pain - the next painful bit was when he pressed really hard in the cavity - I don't know why he did that, but it was a very quick, sharp pain that didn't linger. I wasn't prescribed any antibiotics or painkillers and still don't know why.
I went to the chemists and got the strongest painkillers available over the counter, called Cuprofen, which worked effectively, 1 in the morning, 1 at lunch and 1 about 2 hours before bed.
I am now 1 week into healing and its going very well. I only really notice the wound because of the dressing (I do tend to recover quickly though) and I'm at the point now where I see the practice nurse once every other day - the cavity was about 1 inch deep and 1 inch wide, so not huge.
The re-dressing consists of a minor cleaning and packing the cavity with seaweed gauze that apparently helps fight any infection.
I am still positive that I have a Pilonidal Cyst and Sinus and that the problems will flare up again - I am upset with how I have been treated and I feel like I am fighting my GP to get the correct diagnosis and see a specialist. The nurses however, are very helpful. The operation didn't hurt that much and the aftercare whilst a bit of a drag (practice nurse everyday and district nurse on the weekends) also doesn't hurt - this is the only reason why I think I can go through all of this again - and I really do believe I will have to have at least another lancing, also maybe an operation to remove the cyst/sinus at some point (hopefully not too soon though!!)
I think the most important thing to remember that whilst this web site has definitely helped me and given me comfort (thank you!) when my doctor is being stupid, there is a tendency to think that your wound is the worst and you will have to have a HUGE operation that will be very painful, blah blah blah. This isn't always the case and I wanted to say this!! I really do feel for the people have have bad cases - that must be a whole lot scarier.
Anyway, good luck - I hope other stories are as (mostly) painless as mine!! JS, London, UK.
Date: December 02, 2007
StoryI am in the start of my fourth week of recovery. My incision was 10 inches long and 1 1/2 inches deep. I have a open wound and it is healing very well. It was an emergency surgery because the Scan I had showed it may have gotten to the bone, but it did not!! Praise Jesus!!! I have just started driving because this has been VERY uncomfortable until just the last couple of days. I broke my tailbone 16 years ago and I have always had problems with that end of the body. I have been putting off all this pain to that, and so how long it has been there I have no idea. I am still going to the clinic and getting it packed everyday. They are using Aquacel AG and 4x4's. Which is getting less and less all the time. I am so glad to read and know that there are other people that have had this and it is nice to read the stories and see how long the road may be.
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Date: November 28, 2007
StoryI first realised something was wrong about 3 years ago but didnt think anything of it until last year now i have 4 of these sinus entrance things and a lotta pain and leaking, its not very pleasent i am currently on the waiting list for an op but quite inconvenient as i have started my first year at uni :P, im not entirely sure what surgery im getting but i know i will be in hospital for 3 days after the op :(.
advice is if you notice something get it checked asap
Date: November 28, 2007
StoryHi! Im a 19 year old female and I've got a pilonidal sinus! AND IVE FOUND SOMETHING THAT REALLY HELPS!
Before i start my story ill tell u what helps mine, Alcohol wipes!
I had no idea i had a pilonidal sinus or even what one was till june of this year (07) i had a really sore tailbone when i sat down & figured it was from wearing heels, so just ignoed it & went to bed. When it didnt feel any better the next day i started to worry but still figured it was nothing until i bent down for something and when i stood up gain knocked the EXACT spot on the corner of a table! OHMYGOSH that hurt so much then my painful talibone started leaking... delighful.
So i got my mum to have a look at it and she gave it a squeeze (gross i know) and well it popped, eww.
So off to the doctores who informed me that it was most likly a pilonidal sinus & i would hav to go to the
hospital in the morning for a possible operation! I was so scared. I went on google and found this site which was so helpful.
Anyway luckily for me after 6 hours of waiting to see someone (and stressing about the possibility of an operation) I was told by a very nice surgeon i would not need an operation as my sinus had created its own opening and drained (with thanx to my mum) I was over the moon! He told me to keep the area very clean and that only if it became a problem i would need something done to it, possble op, antibiotics etc (Id like to add i have not had any problems since!-sooo happy!)
Anyways i have been showering every night religiously and using my alcohol wipes about 10 times a day. Every time i feel myself getting hot and think there could be a chance of sweating i use a wipe, same goes after i use the toilet before i go to bed and generally as often as i feel dirt mite be lurking around the area. I know it sounds like a drag having to use alcohol wipes every 2 seconds but i assure u after a while it just becomes part of the routine, and if it helps than that must be good!
And theyre cheap too, we get mine from the local chemist for ten dollers a box (200 per box) And i have found them soo helpful!
I really hope this tip helps someone out there suffering from a pilonidal sinus :)
Wishing every fellow pilonidal sinus sufferer out there all the best :)
Date: November 27, 2007
StoryHi, My 15 year old son had this operation a week ago at scunthorpe hospital. England, and they are amazing, they are very helpfull and have kept us upto date with everything they are doing the nurse come to see to my sons dressing everyday. They tell us everything they are doing to him and we can call them anytime day or night no questions asked. I just thank god we have had a lucky break. Good luck to everyone.
Date: November 26, 2007
StoryHello everyone! I'm a 19 year old female, and I've already had a surgery for my pilonidal cyst. The surgery was a cystectomy.
It all started last summer when I was driving to my boyfriend's house about two hours away. My tailbone area was sore. When I got to his house I looked in a mirror and saw a small red bump.
When I got back home I looked around on the internet and figured that I had a pilonidal cyst. The doctor instructed me to take warm baths three times a day for 15 minutes. I did, but the bump only grew larger and the pain grew worse. I went to the doctor, and when she saw it she got me an appointment with a surgeon right away. He cut it open and drained it with a local anaesthetic. The process was horribly painful, and I could smell the pus. He packed it with gauze, told me the next visit he would tell me about surgery, and sent me home.
I wasn't supposed to get the wound wet for 24 hours I believe. I had my mom take the gauze out because I was too afraid to. First I got the wound wet, and then had her take out the gauze. I was surprised because she had pulled it out without me even noticing. Then a flood of pus came out.
Well, a couple of months later (June) I went in for surgery. I'll say it right now, if I have to have another surgery for this I will not be going back to the same surgeon. I feel he was totally vague about the whole matter. He did not explain to me what kind of surgery he would be doing, and he did not explain anything about aftercare which I have read is the most important part when dealing with pilonidal cysts. He didn't even tell me about what he took out of me. I wish I would have thought more about getting the surgery instead of just blindly trusting that he knew exactly what he was doing.
He did put in some stitches but not on the whole wound. He didn't have me pack it or anything. I bled for a couple of weeks, which I still don't know is normal or not.
When I went back to college in late August, the wound had started draining again. The health center at my college offered to pack it for me. I called my doctor and he prescribed some medicine and said something like "this happens sometimes" when I asked him if the gooiness I was experiencing was normal. He didn't recommend packing. Once again, he was very vague when he answered my questions. The health center also took out some more stitches. I still don't understand why my surgeon didn't take out all of the stitches. There was one stitch that was never taken out because the person at the health center couldn't find the other end of it.
Well, the draining stopped, and I felt like I was healing well. There was no pain. But lo and behold, a couple of days ago (this is late November now) I felt pain in that area. When I looked at it there was blood. Not a lot of it, but it was still there. Now it feels wet back there sometimes, and it looks gooey again. Also, when I wipe it with a tissue, the tissue smells bad. I've learned that bad smells are not a good thing.
So I'm going to go back to the health center and have them look at it. They've been more helpful than my surgeon has been. I just want this thing fixed.
I wish the best of luck to everyone who is dealing with this. It's annoying and very painful. My advice to anyone who hasn't had surgery for it yet: Don't rush into surgery. There's a page on this website that tells you what kinds of questions you should ask your surgeon before you have the surgery. Find a surgeon who you really trust will take care of you. Don't blindly trust the first surgeon you meet.
Date: November 25, 2007
StoryHi guys, Dori from Baltimore, My son has been to Dr Bascom for surgery, and we think a bit of infection was left , or he may have gotten an infection in the hospital. However, Dr bascom is now e-mailing with our current surgeon Dr martin at Good Sam in Baltimore, and everything will be documented and the Bascomsand Dr Martin will still correspond. I am very happy that we went to Oregon, because, now we have the Bascoms looking out for us even now,and we are happy to have found a surgeon in M
aryland who really listens to us. My son is still struggling, but he has a great faith. I am feeling pretty optomistic now, finally. There were alot of tears before this surgery, mine and my sons,this disease really wears on the whole family, and his life is on hold right now. Hope to have good news next week. nov 25,07
Date: November 25, 2007
StoryIf you are reading this in fear that you have a pilonidal, and are starting to get scared about the process, don't worry. I had a pilonidal, and granted it hurt like hell, but the healing process went fairly smoothly. Here is a tip, when you wake up in the recovery room, and they give you some sort of narcotic pain killer, you will feel amazing. DO NOT SIT DOWN ON YOUR RIDE HOME! Do yourself a favor and stay off your ass for a while. Lay down in the back seat on your stomach on your ride home. I started bleeding and had to go back to the ER and my Mom, my boyfriend the doctor took turns for 7 hours putting pressure on my ass to stop the bleeding. However, after that, the three weeks I got off of work (thanks to short term disability insurance) were wonderful! Just make sure you bath frequently and change your bandages. I actually found that maxi pads work very well! I now have a new appreciation for women's menstruation cycles! The healing kind of itched a bit, but that is a good sign. Every once in a while the scar will tingle but it hasn't ever come back, and its been 4 years. I've only ever had one, and hope to not have anymore in the future. Its not always a horrifying experience. Just ask your surgeon questions, and you can always choose a different surgeon if you do not feel comfortable with your current one.
Date: November 24, 2007
StoryI started having tailbone pain at age 14. I have always thought it was just a bruised tailbone since I fell on my tailbone. Well, it was recurrent, I went to the community clinic and they did not know what it was. Since then, I just endured the pain. It usually lasts 1-2 days and it was gone. Well most recently it has been hurting me more than it used to, to the point that I couldn't lay on it, but again it would go away after 2 days. Early this month (November 2007) I had a flare up and it was very painful, I couldn't lay on it again. Day 3 passed and it still hurt. I tried hot compress on it, but it really did not ease the pain. I finally googled it and thought I might have a Pilonidal Cyst. Day 5, I knew something was wrong because when I looked at where the pain was coming from, there was a huge bump. A close friend said it might be a pilonidal and I should have it looked at.
Well, I was in so much pain, I couldn't sit, walk without the pain that I thought maybe I should go after 7 days in pain. The doctor confirmed it was a Pilonidal and was sent to a general surgeon. They lanced it, without any anesthesia, it was the worst pain I have ever felt. I was screaming at the table, and after the procedure, I was in shock, there were so much blood too. They sent me home with Vicodin. I felt so nauseous under it, but it helped. I still felt the pain through it, but it wasn't as bad. It was a production just to get onto and out of bed. I finally went back on the 4th day (counting the procedure day) for the doc follow up. He said I should take baths and change the dressing twice a day. I was FREAKED to take a bath thinking that it would hurt. Open wound and water, I thought did not mesh.
Well, it wasn't so bad, I went in the water and took the packing out. Overcame that, and the second big step was to actually pack the wound. IT was SO intimidating staring at a wound that looked like a red walnut shell. I was trembling and just was very scared. Just got to relax and do it though! So I did, and now, it's been 15 days since the lancing and I am so used to it. I am going to the surgeon next week for the 2nd follow up and hopefully all goes well. My next goal is to get the cystectomy.
Date: November 23, 2007
StoryHey 17 year old male. I had the surgery june 1rst and iam STILL healing. This is a very depressing disease. Iam still draining EVERY fricken day. i am tired of it and want the wound to heal. My left butt cheek is stiff and red. I think it might be infected. I also have been draining a amber color fluid mixed with blood.
Date: November 22, 2007
StoryHello all and God Bless, I am a 25 year old male from Central Florida. I have been dealing a "diagnosed" pilonidal cyst since i was 22. From painful swelling to large amounts of discharge and pain. I was timid about my problem and kept it to myself/ E.R Dr's for lancing. I tried to keep it covered during flare ups to minimize the pain/ keep my clothes clean. After dealing with the issue for 2+years i started feeling quite nauseous during the flare up and knew i needed to see my general practitioner. After seeing my gp i was referred to a surgeon. He saw my cyst and said it needed removal asap. so after a night of prayer i decided I needed this and setup surgery.
I had it on 10/30/07. Everything went cool, surgery took about an hour @ an out patient center - i was there a total of 6 hours start to finish. The surgeon told me he had to cut deeper than expected and decided to leave the wound open to heal (The wound care home health info sheet from 11/2/07 says the initial wound was 9cm long 5cm wide and 3cm deep). I am still out of work by choice as i can not see my incision area to pack it nor am i @ ease with my family changing the packing --to nervous about my sister getting flashbacks of childhood grievances.
One thing i wanted to point out to you all is your diet post surgery. Protein, protein, protein -- and High quality protein is a must. I started with a deep open wound and now as of 11/20/07 its 7.5cm long 2cm wide and .5cm deep -- its a blessing to heal so fast without pockets of exudate/marsupialize (the nurse poked me to check, ouch!). I have been on a diet of high quality proteins, whole meats, steaks, eggs, chicken, fish nothing processed not mcdonalds hamburgers no 7-eleven hot dogs just natural fresh whole meats, supplemented with big leafy green salads, slim fast optima to kill my desire for sweets, quality vitamins and faith that i would heal and be made whole (a promise from Christ) - a positive attitude in your recovery period does help alot. I will keep you guys in the know of how things are going. so far so good. Have a wonderful day.
Date: November 19, 2007
StoryI was 18 and going to college at the time (1998). I was out hanging with friends when I felt something wet in the back of my boxers. I rushed to the bathroom and saw blood. I looked in the mirror and saw something that looked like a zit that had popped. I assumed that is what it was and went about my business until a week later when it happened again the the same place. I didn't want to tell my parents at the time because I figured they would panic.
I went to my general physician. He said that it was just a boil. No big deal. He could lance and drain it right there and I would be fine. He lanced it (hurt like the dickens) and I was on my way. A month later (after the lancing had healed a week or two before) bang, I'm bleeding again from the EXACT same spot. Being that it was in an embarassing location I went to my Dad about it. We went back to the general physician. He guessd that the lancing didn't do it. He lanced & "scraped" it this time (hurt even more). Two weeks later it was back.
My Dad told my mom and she sent me to a Dermatologist. The Dermatologist took a look at it and asked me what had been done before I saw him. He chuckled and said he knew exactly what it was and referred me to general surgeon. After I had my pants back up at the surgeons office he gave me the laymans description of what a Pilonidal Cyst (the term he used) was. He said that there are a few cases of them leading to "cancerous conditions" and that surgery to have it removed would be best. I really didn't question it or ask for a second opinion. I signed-up for the surgery.
I did the "open wound" type if surgery because the reccurance rate was lower. As it is described on this page the healing process took a while and I saw the surgeon for the next 2 1/2 months. I did all of my dressing changes. Including the first when I almost fainted. It's a pretty gross thing to see but you get over after the first few times. I got to the point where I was looking at the wound with some interest when I was changing the gauze.
Random Notes: I haven't had a re-occurance and it's been 9 years. The scar has faded noticeably. It still looks odd but that's just a "war wound". I did not have any soreness of the scar afterwards either. I'm kind-of amazed to see this site up. I was looking up the condition to explain to my girlfriend (she wanted a better explanation of the scar I have). I'm glad I had the surgery. The few weeks of "sitting problems" were worth not worrying about a re-occurance.
Date: November 17, 2007
Storyhello everyone,
recently I was getting back into the military after serving in the Marine Corps. During the physical evaluation, the Dr. told me that I have what seems to be a cyst and to get it checked out before he allows be back into the military. So i go see a General Surgeon, he says that he will perform surgery on the cyst and i should be home that same day. So i am ok with this, heck what is a day anyway. So i go in for the surgery on a tuesday, the 2nd of October. when I wake up, the doctor comes in and tells me that it was larger than he originally thought, so I ended up being in the hospital for 2 days. He cut pretty wide and pretty deep, huge haha.
So I stayed out of work for a month, and during that month I had a wound VAC on so it helped it heal a little better. I couldn't return to work because I am a officer in a federal prison and I am not sure inmates would be kind to me carrying a wound VAC around!
It is still healing nicely after I am changing the gauze 2 times a day, which is kind of a burden, but hey i will soon only have the one hole there and that's all I need. if you have any questions about the excision surgery email me
stewpd2@yahoo.com
more than willing to share any info I can. It is not pleasant, but you can definately get rid of them
Date: November 14, 2007
StoryHi from San Antonio, TX. I'm a 22 year old female that was just dumbfounded with what happened. I'm the type that will stupidly almost die before going to the doctor. Part of that is having no insurance... the other part pride that I'm tough and can handle pain. Like I said... stupid.
For the last year or two I had noticed a little bump and pain near my tail bone area. I'm extremely active in sports so had just assumed I had fallen somehow and injured myself but I never thought it was serious.
About a week and a half ago I noticed that it got bigger... and started to get bigger...and bigger very quickly. Like everyone else it got so painful I couldn't sit down and it was painful to even lie down. I joked about it with co-workers that I had a broken butt until last Monday I decided that something was really wrong because it just kept spreading, getting bigger and more painful.
I went into the Texmed clinic here in San Antonio and quickly realized the seriousness. After 4 shots in the infected area (SOOO PAINFUL by the way), and cut open then drained. The doctors (3 of them I've spoken with so far) really gave me no information on the questions I asked on what this was and how it happens.
Thank God for this site and all the useful information. It seems to me that this is so common but people are reluctant and embarrased to talk about it. I'M NOT! :) It's painful and horrible and I have this fear that it will flair up again anytime. I'm just praying for the chance to get insurance that will cover this if it happens (I hope it won't) again. Good luck to you all out there... I FEEL YOUR PAIN!!!
God bless,
AB
Date: November 13, 2007
StoryI was just flipping through my old medical records – curious to see exactly what was available on line – and came across the entry for my pilonidal cyst. That, of course I remember, how could you forget?, but what I didn’t remember was the ‘sinus’ part, so of course I opened it up to find out what that meant. I then went to find out more and now here I am. Glancing through the stories, I realize that I have probably been more fortunate than others. I was 19 when I had my first flare up, within six weeks I was in the ER with a burst abscess that had to be lanced, and a month or so later (to time with school break) I had open excision, heal from the bottom surgery. All told it was maybe six months beginning to end. My doctor at the time – it was 16 years ago – was in the congenital camp. I was told that it was residual skin and hair from an overfold in skin formation in utero. Who knows, that may be true, I am one of those people with epidermis found on the inside, at least according to the report, but more likely it has to do from being someone who spent two hours a day in sports throughout high school to sitting around chatting and watching cartoons at college.
That transition impacted more than just my butt! I am not sure why I want to add my story but I think that it has to do with many of the people posting still being close to the event – considering surgery, about to go into surgery or within a relative short timeframe of having undergone surgery or many cases undergoing multiple surgeries. My experience has been relatively positive. It did take a long time for me to heal *fully* post-surgery and I still have soreness, plus a horrible scar that is extremely noticeable (I affectionately refer to it as the scar from when my tail was removed just to see the guy’s expression), but have not had any reoccurrence or flare-up in intervening years. Occasionally my scar will ‘split and sweat’ but that is almost always directly related to my weight and/or amount of exercise I get. It doesn’t hurt although I don’t think I have a better motivator for getting into the gym. I just think that people shouldn’t be scared about the surgery and try not to be too embarrassed about the issue.
My favorite memory of that whole period was how understanding everyone was – my family was supportive but more importantly my roommate in college, a girl I had only met a few months prior, helped me change dressings for weeks after my trip to the ER as with the guy I was dating helped me after surgery. The other positive thing is that it has made me more aggressive in managing cysts. I am apparently prone to cyst, from hair to bone. As with everything, there’s the good and the bad. In this case the bad is just about the most embarrassing, annoying and painful thing you’ll ever experience – five separate dislocations and three broken bones included – but the good is there if you just look for it. Not to sound sappy and trite but it’s true. Best of luck to everyone. – e, boston
Date: November 08, 2007
StoryHi from Baltimore, this is Dori. My son has had the upper cleft lift and was doing fine until today, exactly 1 month later. I'm hoping it is not coming back, he has a hole in the area near his rectum, much lower than ever before, he bled, but no puss was found, I'm hoping it is acut from him rubbing it clean, which he was told not to do! I am so discouraged, but still feel that Dr Bascom is our answer and will fly back to Oregon if we need to. I don"t regret going in the first place. His office calls me to check up on him. Dr Bascom listened to every question I had, and took me seriously, and they thanked us for the opportunity to work on JAMES, AND THEY HAVE DONE OVER 700 OF THESE SURGERIES!! Our surgeon back in Baltimore is aware of the Bascom procedure, and said that his wound looked okay on Monday, so we shall see. By the way if you have had 2 or more surgeries, the only way you are going to heel is the upper cleft lift, well, not the only way, but most likely the only way, and if we find it impossale to go back, we will find a doctor who has been trained to do the Bascom technique. Most likely if my son needs another procedure we will go to Dr.Bascom in Oregon.If you are reading this send some prayers my son's way for healing, his name is James, I pray for every one's entry that I see. See ya good luck to all of you! Dori, Baltimore, Md.
Date: November 07, 2007
StoryMy name's Mandy and im only 18yrs old. Right off 2yrs ago i had my first pilonidal cyst...it was very painful to sit down at all...or even lay. I ended up having if surgically removed but i was sown back up...i didn't let it heal from the inside out...but that's bc i was still in school and i would miss too much! i did it my way and hoped that they got it all!! Well...ive been clear for 2yrs right...well... 3days ago...i started having more pain again. But this time...it feels like it's at the very tip of my tailbone...its getting harder to sit now. I can't see the cyst(if that's even what it is) like i could the last one. But if i go to feel on it...it hurts just like the last one did. Anyone whos ever had one can never forget that kind of pain. This time im even having low back pain as well...i looked it up and i can't find many cases like this so im a little worried about this one. I have an appt. with my Dr. tom and hopefully all goes well!!
Date: November 06, 2007
StoryWow, I'm really happy that I found this site! I think I am going to have one of the most original stories on here. I am currently a 18 year-old American Exchange Student in Germany. I was finally diagnosed with a Pilonidal Sinus infection last Friday after a week of discomfort and light draining. I am scheduled to go in for surgery tomorrow morning. I'm hoping that my results coincide with the positive stories on this site rather than some of the more gruesome ones. Wish me luck! I will post the results once I know them!
Date: November 06, 2007
StoryHi I'm a 23 year old female that has lived with a pilonidal cyst most of my life. I was lucky that it didn't start really flaring up until I was 19 and even then it was treated with anti-biotics and went away without ever being lanced. It flared up again when I was 21, but again just anti-biotics and it was gone. It usually always got sore around the timeof my period, but never grew then. About 2 weeks ago I noticed it was growing again and figured this was my once every two year flare up. I went to the doctor and he prescribed my anti-biotics and said he wanted to do a follow up in 4 days. So on my way I went. I should mention that after reading horror stories of surgery on here I swore I would NEVER have the surgery.
So after the four days of meds I noticed it was still getting larger, more
uncomfortable, and not "oozing" as it had in the past. As I left for my Doctor's office I was scared in knowing that it would probably have to be lanced. Well he agreed that I was not improving and called in a surgical consult. I went to the hospital to meet this surgeon and talk to her about my options. She decided that I needed surgery immediately and admitted me into the hospital. Around 3pm that on 29 OCT I had my surgery. I was given a full spinal block, and some medicine in my IV to make me sleep. My surgeon made about a 2 inch incision in my buttcrack, and then removed all the chronic tissue, so I also have a 2 inch deep hole. I spent the night in the hospital in order to keep my pain under control. I was released on Tuesday 30 OCT, and told to come for my first dressing change the next day.
So I went to my first dressing change which was not fun at all!! I then went home to rest, and relax. Well later on in the evening I went to the bathroom and saw that I was bleeding through my dressings so I had to go to the ER. When I arrived in the ER the had to take my dressings off and inspect my wound. They found that I had several large blood clots in my wound so they preceeded to "fish" them out with suture removals. This was the most agonizing pain I have ever felt in my life. I was finally given a local anesthetic about halfway through the procedure. After all was said and done I returned to see my surgeon the following day for another dressing change. She noticed that it was still bleeding on one side so she used Silver Nitrate to cauterize it. This was also very painful. It felt like someone tore my wound open and threw a lit match in it. Lucky for me that is the worst I have endured so far.
I am one week, one day post-op, and getting better everyday. All's I can say is thank God for Percocet!! I do have one question for other people who have had the surgery, has anyone else had back problems? I have been having a lot of issues with my sciatic nerve since the surgery. My surgeon says this can be common due to limited mobility and such. I still can't quite sit down yet, so I was wondering if anybody has any good ideas as to stretching without disrupting my wound. You can e-mail me at rwium@hotmail.com
Date: November 05, 2007
StoryToday is exactly a year since I had my abcess removed. I had had the abcess a week, been given antibiotics but after getting to the point of being unable to walk I went to the hospital and got operated on the following day.
To anyone suffering, don't worry about the operation, the relief you get after the abcess is removed is amazing.
It took about 4 weeks of going to the dr's every day then every other day to get my wound packed and have had no problems since. This website helped alot as like most people I had no idea what a pilonidal what-ya-ma-call it was!
My thoughts go out to everyone suffering with such a condition!
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