Personal Stores Archive #22

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Date:

September 25, 2004

Story

Well, my experience with a pilonidal cyst.. has been the most horrible thing to deal with. Its nice to see other people know what its like. Ive been surrounded by people telling me " it'll get better... dont worry" cause they have no idea the amount of effort it takes to get through it. I, like everyone else had some pain sitting and laying on my back. Im a back sleeper, so it was frustrating. I thougth I had bruised my tailbone, but much to my surprise.. I hadnt fallen at all that I could think of. I brushed it off until one day it felt as if I was sitting on a golf ball. It was really annoying, didnt hurt too much at this point. All of the sudden I woke up one day on my back and I was in tears. I could feel a lump protruding my skin.. I was horrified. Only the worst possible scenarios entered my head. I thougth it was a tumor and I was going to die. I went to the nearest walk in clinic and he knew right away what it was. My mother is a nurse and shes never even heard of them before. As common as they are, I dont think people go around bragging about a cyst in their butt area. I called the local surgeon who was really exprienced in this area and I begged him to help me. I couldnt stand for more than 5 mins without getting light headed from the pain. COuldnt sleep, couldnt sit.. I thought I was going to start getting bed sores from relaxing on the same area of my body for so long. I went and had my surgery one day in outpatients. THAT WAS SOMETHING I NEVER EVER THOUGTH ID BE PREPARED FOR.. EVER!!!! I knew I wasnt going to be under any anesthesia, but I figured the freezing would maybe help a little.. WRONG! Demoral for the pain, 3 needles of freezing.. and I felt everything. Niagara Falls fell from my face, it was horrible. I was biting chunks out of my mother's arm, crying, screaming.. the paitents waiting in emerge must have thougth I was dieing. After I got up off my stomach to put my clothes back on, and saw the pool of blood below me, I passed out. I dont remember much about getting home. All i remember from the past month is the visits from the nurses. I was always shy about my butt area... but now since half my town's see my derriere Im no longer shy. The healing is coming along, although not fast enough. The surgeon had told me I will be doing a follow up surgery to completely clean the area out. The outpatients surgery was simply the removal of the cyst sac and drainage. Im not too pleased about having to go through all of this all over again.. but I am going to do it now.. and hopefully prevent it from happening later in life. I dont know if I could do it again and I wouldnt wish this upon the people Ive hated the most in my life. I sympathize with you all.. and to others who are reading this who are about to get surgery... Good freakin Luck!!- Jen

Date:

September 24, 2004

Story

I got my first PC when I was 17. It came about when I fell very hard on my butt. We thought I had just bruised my tailbone but when it developed a lump and my mom could see that I was in extreme pain she took me to a doctor. Well the Dr. pushed and poked it then told me it was only inflammation. I was in tears from pain the whole way home (which only took 30 minutes) and by the time we got there it had burst. This aweful, foul, rotton meat smell was leaking from my butt! I was in my room and yelled for my mom who was just horrified by the sight and smell and much to my embarassment called my step dad in to take a look. He suggested a second opinion. My mom had an appt. w/ her gyno and instead had her Dr look at me. She right away knew what it was and had me sent to another Dr. to get it taken care of. After much excruciating pain it was drained, bandaged, and I was sent home w/ some good pain meds. 6 months later another one pops up. The Dr. decided I needed surgery to remove the tract. Had the surgery was stitched up and about 6 weeks later was good to go!Hooray! Or at least for a little while. 2 years later I got another one, this time it was bigger. I had it drained and was sent on my way. About a year and a half after that I got another one. What did my poor butt do to deserve this??!! I was scheduled for another surgery. Before the surgery I got 2 more. I had the surgery and was pretty much confined to my bed or a couch for four months. I was hooked to a wound vac, I had a home care nurse and weekly doctors appts. I thought for sure this would be it. After I had healed I started showing signs of another cyst and sure enough i had one. After going back to the Dr for this on at least four occasions after the surgery I finally stopped getting them! I was cyst free until last week. My scar area always hurts off and on but this time it didn't stop and it swelled. I had a trip planned for just a few days and the Dr told me I was fine to go just take these antibiotics and pain meds. Well I spent my whole trip in a Jacksonville Florida hospital. I had a fever that topped off at 103.4, I hadn't eaten or really drank anything in almost 48 hours, and when I started getting dizzy and weak I decided something was seriously wrong and called a taxi from the hotel and went to the hospital. Instead of the cyst bursting it spread, the Dr. in the ER said that it couldn't get through the scar tissue. The infection from it got into my blood stream and I was very very ill. The Dr.'s in Jacksonville told me I had to stay in the hospital until the infection was gone.I only had to stay for 2 days but I was very upset when the Dr that discharged me told me that when I got back home I needed to see the surgeon b/c i would have to have surgery again. Since I was 17 I have probably had 15 or more of these things drained or removed. I would not wish this kind of pain on my worst enemy. Jessica

Date:

September 24, 2004

Story

I am not sure how to add this story - closed stories were requested by the admin so here is mine. Pilonidal closed excision story I first noticed (or rather my girlfriend did) a cyst on my butt a year or so ago. I thought it was a growth that would just go away. It did not, and instead grew a little bit. It was never painful, nor did I develop sinuses nor did it drain. I finally got fed up with having a lump on my butt and went to a doctor to have it removed. I thought I would be able to have it cut out on the spot. I had no idea what it was. He looked at it and said he was referring me to a surgeon. I made the appointment and saw him the next week. That was the first time I heard the word "pilonidal." We scheduled surgery for about a week later and after I went home to research it I was shocked and scared. I called the surgeon (worried about recurrence, the open surgery, etc). He calmed me down and explained that he was going to close the wound and that mine appeared to be well contained and was relatively small. Both doctors found it hard to believe that it was not painful. The surgeon said it should be removed as eventually it would get bad. I was told not to go on vacation for two weeks after surgery - he wanted to see me for that period. I went in for surgery August 5, 2004. The IV insertion was the worst part of the day. After that I was wheeled to the OR floor and met the anesthesiologist. I refused to get a spinal/epidural as I had one once for hip surgery and found it quite unpleasant. (Bladder was never the same afterwards and I am not that flexible and didn't like the puncturing of the spinal fluid sac) The surgeon agreed that we would do a local with some kind of sedative/narcotic. They wheeled me into the OR, took the gown off and flopped me over onto my stomach. Got comfy, had a thermometer in my mouth and had my butt area shaved. Then the drugs were put in the IV - felt really light headed and good, then apparently they started the local anesthetic followed immediately by the surgery. It took about 20 minutes I think. I felt awake the whole time but was probably "sleeping." I was aware of poking on my butt, but was dreaming or something. I woke up and they asked me how I was - I replied that I was fine. I went to the recovery room. Bandages were checked a few times and peeing into a bottle in a bed was not too easy after 34 years of training not to do it. No pain at all from the surgery so far. I bled through the bandages, into my gown and told the nurse about it as I was being released. She added bandages. The blood was not leaking through, rather dripping down the crack and then into the clothes. I had no pain until later that day and I took some of the good pills prescribed. I remember that walking and sitting was very awkward with the stitches and the bandages for the first day. Mostly I took the pills to help sleep - very little pain from surgery. Pooping was a little challenging with the bandages on. I did it as best as I could. The top of the cleft was taped together. I was told I could remove the bandages the next day, which I did. I was also told no shower until the following day. Ripping the tape off was very painful - all them hairs... I tried looking at the wound but it was all nasty with blood and covered with some kind of tape. I washed back there as gently as I could, as I wanted to keep clean and avoid infection. I took the pills for the first few days to sleep. I stayed out of work for 3 days. The scar was quite long (2 inches maybe) - longer than I expected for just a grape-sized lump. I forgot to ask the surgeon how big the stuff was and how much he removed, but he did say it was well-contained and was simple to do. He had high hopes for problem free recovery. I returned 5-6 days after surgery to check progress. He replaced the tape over the wound and told me it was healing very nicely and that I would not need to see him again. I kept asking about riding a bike and he insisted that I should stay off it for two weeks. Not wanting a recurrence or other issues, I followed orders. I started putting vitamin e on the scar after a week and did that for about a week. Then stopped. I have not had any problems so far. The scar is a bit raised and rough. I am thankful that I have been ok so far and that closed was an option for me. Note again, I never experienced pain, draining or infection. I had only a cyst, no sinuses. Best wishes to you all.

Date:

September 23, 2004

Story

Hi everyone! I've had my cyst for about 3 years now and I am now finally having surgery. I've been reading through everyones postings and visiting this website frequently for about 2 years now but have never read anyones experience with the bascom technique. I went to a colon rectal surgeon last week and I was pursuing a open wound healing. He usually tries the bascom technique first and then if it fails he then does open healing process. I set up surgery for next week but in the meantime I have tried to find more information on this procedure but have not found too much. (I guess I am just so used to this amazing website which has the best information). I am a little hesitant on this surgery because from what I understand they are not aware of long term results. I was wondering if anyone has had this procedure and how there recovery was and the pain involved. Any feedback would be greatly appreciated. And not too scare anyone...... I think I was on a bogus website... but I read that there is a VERY small chance that the cyst could be malignant. Like is said, I think the information on that website was incorrect but has anyone heard that before???

Date:

September 22, 2004

Story

Greetings- I've had a positive experience with having a pilonidal cyst removed using closed wound healing and just wanted to share for all those who are anxious about the procedure(as I was for many months). I first became aware of my cyst about three years ago. It would flare up every few months, drain, and then become asymptomatic for several more months. I did some online research and came to the conclusion that this was what it most likely was. I never went to the doctor though, hoping it would just go away. However the period between inflamations became less and less, to the point where about 3 months ago it was ocurring every 2 weeks. By this time I had several sinuses through which it was draining, and it was becoming a pain in the butt...literally. My suspicions were confirmed when I finally went to the doctor.(Beginning of July this past summer, 2004) I was planning on attending grad school in the fall, and wanting to have it taken care of before I left. He recommended that I have it removed and referred me to a general surgeon. I had an appt. with a general surgeon a week later, and an appt. for surgery at the beginning of August. I had the cyst removed the first week of August. The surgeon was able to close the wound after finding that the cyst was small and, by the grace of God, there was no sign of a current infection. After surgery, I was surprised at how quickly I was ready to be up and around. However in the case of closed wound healing, it's imperative to do as little as possible for a week or so. After a day or two though, I was feeling back to my normal self with only a little discomfort. Staying still then was the hard part. I had the stitches in for 4 weeks, and the wound continuously drained for the last 3 of those four weeks. (That only entailed keeping a gauze dressing on it though, and changing it 2-3 times a day...no big deal considering pre-op I had the same problem only now it was predictable) When I had the stitches removed there was still a small section open and draining. It closed up within a couple weeks, and here I am in my 8th week post-op, attending grad school and not thinking about my pilonidal cyst much at all. While I know that there are people who have had negative experiences, please know that there are many more of us out there who have had positive ones.

Date:

September 20, 2004

Story

Julie, My name is Austin and I had surgury on December 17th of last year. I would say that it was the most painful process I have ever been through. But to answer your question, it took me about 4 months to almost completely heal. I had someone change my dressings on a daily basis (twice a day) and shaving is a must. However you must use a straight razor and it is sometimes very difficult. If you would like to ask more questions feel free to e-mail me waats83@hotmail.com. Austin

Date:

September 18, 2004

Story

My 18 yr old son had his outpatient surgery in late June. It is now mid September and he is still not healed. His wounds are lined up right below the top of his 'crack'. He started with two holes after surgery, but now he has five! I know that they are just openings to the actual cavity that is trying to fill and heal, but I feel like it is getting worse-not better. Has anyone had more holes/openings develop during your healing period? We are changing from our home healthcare nurses to 'wound care' home healthcare nurses to try and speed up recovery. He was supposed to enter the Navy 8/10, but had to delay entry due to this thing. He cannot go in until the Dr gives him a clean bill of health. Does anyone have any words of advise, or personal experience, similar to ours? How long did it take for complete healing? Is it normal to have more holes into the cavity develop? What about shaving around the wound opening? Any advise? If so, I would feel better that we are on the right track. Thanks, Julie

Date:

September 17, 2004

Story

I'm not very internet savy, however, I am considering having surgery for a cyst that I have lived with for 40 years. I first realized I had a cyst in my butt cheek when I was 12 because the sinus (I never knew it had a name till a couple days ago when I entered this website) bled a little and my mom took me to the doctor. I had minimal trouble out of it until I was pregnant with my daughter in 1980 (age 30). It became infected and got rock hard. Caused me to lose a week of work. It hurt very, very badly. It was only the size of a half dollar on the outside but it reeked havoc in my life for a while. Then it didn't get infected again until I was 44. One reason it did not get infected, I believe, is because I kept is washed with Betadine when it seems as though it might be getting infected. It has had small flare ups over the years many, many, many, many times. But the big flare ups are the ones I remember well. So I went to the doctor at age 44 and he did the lance thing (without anesthesia) and it hurt. Since then, I have had, I guess, 6 or 7 major flare ups. But since the lancing, the wad drains pretty quickly and is able to heal. I ran out of Betadine and did not realize that I couldn't find it in the pharmacy because you had to ask for it. I did not replace my supply of Betadine, however, I have discovered a very useful item. IODINE. As long as I put iodine on it every single morning, I seem to have it under control. I missed 2 days of putting on the iodine and it got infected. I think I am now to a point that it is weakened and needs to be removed. But then my brother became sick with melanoma and died and I didn't have the out of pocket $ necessary and I have changed all that. I am about to schedule an appointment with a surgeon. I saw another family doctor (not the one who lanced it) and he said, I can remove it. its no big deal. I have had this thing growing in my body for 40 years! I think it is a big deal. Also, last time it became infected, it made my lymph node in the front of my leg also bulge. It is time. I am so glad to visit this place and learn that one needs a surgeon. I somehow knew that, and was wavering between the family guy who said he could remove it and knowing that it is more extensive than that. I want a good, complete and healthy outcome and I believe I will need someone who has done this more than once to do the procedure. I have learned so much about this in the last 2 days of reading all the stuff posted here. Thank you so much.

Date:

September 16, 2004

Story

I'm an 18 year old male who just spent the entire summer of 2004 healing from my sugery. I first realized something was wrong a week after I graduated high school. This was Mid-June. I started to not be able to sit without discomfort. I figured it would go away in a few days, so I ignored the strange pain in my lower tailbone. One day as I got into my car, however, the pain was the worst I had experienced up until the time. When I went over bumps in the road, I would scream out in pain. I knew something wasn't right. After discovering blood and puss in my boxers while going to the bathroom, I decided to call my doctor. A week later I found myself at a specialist's office, schedualing an appointment to remove a pilonidal cyst. I was shocked I had it. The operation was to take place two weeks from the office visit. Those two weeks were some of the worst days I've ever lived through. Sitting down had took forever and standing up took all my strength. Every step I took was painful. Basically, anything I did that involved the use of the lower back, I would be screaming. And one uses their lower back pretty often, too. I had to use my sister's pads to protect my boxers from being ruined. Day after day I anxiously anticipated my operation. I found this website to be an incredible help in that period. It reasurred me that I was going to be alright and that I wasn't the only one out there that suffered from this. Finally, the day came. I was knocked out and 45 minutes later I was woken up with a huge bandage taped to my tailbone area. The next two days were the best - I had no pain AT ALL for the first time in weeks. It felt SO GREAT. At the same time, I was expecting any pain medication in my system to wear off and to start hurting from the open wound, but it never came. I had to clean it and re-bandage it everyday with the help of my father for two months. It healed slowly at first, but after about four weeks, it was visibly shrinking fast. Today, two months and 7 days later, the wound is almost fully closed. I expect only two more weeks until I can forget it. I did start experiencing more pain once it began to heal faster, however. Random pulls would make it hurt for a few seconds then go away. MY ADVICE: Keep it cleaned at all times and free of infection. That is the quickest way for it to heal. My doctor can't beleive how fast I've healed and said it isn't typical to heal that fast. I guess I got off lucky, but I beleive it was beacuse I kept it clean. Also, I suggest little activity which requires you to move your legs a lot, i.e. Running regularly, sitting with them open, etc. Thanks to the creator of this site, I truely am greatful for it. I hope I can help ease some people's thoughts with this summary, and give them some pointers too. I feel great now, and so will you once you get it all over with.

Date:

September 13, 2004

Story

I am a 24 year old female and have had a cyst for about 5 years. I didn't actually know what it was until about 18 months ago. At first I just noticed I had a very sensitive lump at the bottom of my back...or the top of my bottom (!!)and it would really hurt to sit down. Then it went away for about a year or so then it came back every now and then. Then about 2 years ago I had to go to casualty (I am British!) to have it drained as I was in so much pain! I stayed in over night then I had to have it packed for a few weeks afterwards. I could only take a week off work though so I was back sitting on it quite soon afterwards, which didn;t really help! Anyways, it went away for about a MONTH (!) then it came back with avengence, very painful and inflamed and lots of puss and stuff, not nice at all...not trying to belittle the guys' stories but it didn't exactly make me feel very nice and feminine...!! ;) Anyway, went to the docs a few times and she would just give me antibiotics and it would go away but then come back, so she referred me to a specialist. Now the state of the NHS in Britain is such that I was referred as an "emergency" in June...and didn't get an appointment with the specialist until February!!!! Then he said I needed surgery...so then I had to wait until June for surgery. I went in for the surgery, nearly fainted a couple of times afterwards as the anaesthetic had a funny affect on me! I had 4 weeks off work then I had to go back and I was having it packed (by a nurse everyday - HOW ON EARTH ARE YOU GUYS DOING IT YOURSELF??!!) for 9 weeks - it was 4cm deep and 7cm long - no idea how big this is in relation to pilonidal cysts...!?! To cut a long story short, it had been 2 weeks since I had finished the packing when it started 'draining' again and it has started hurting again too. I have got a check-up at the hospital next week so we'll soon find out what's going on...! I hope to God that it hasn't come back or I shall chew my right arm off...

Date:

September 13, 2004

Story

Hi guys......... My name is Albert, 27 year old male.. I just had the surgery on my tailbone for the cyst about 2 weeks ago.. I hope I am healing soon, because they used stitches first and now I am being packed where the top of the crack is now. Surgeon said last week this is normal, because that area is hard to keep moisture away.. Easy for him to say.. it was hurting like crazy during the packings... still being packed now but the whole is getting smaller so hopefully he says on tuesday I wont need it done anymore.. I still have drainage, but not nearly as bad as when I had the stitches put.. Thank GOD!!!!!! I have had this cyst for 5 years, at first notice it felt like I was laying on a bunches of rocks, didnt think much about.. it kept bothering me so my doc sent me for a CAT Scan. he said it looks like you have a cyst possibly on my kidney.. Well I was frantic by then, went for another test came back normal... It wasnt until October of 1998 that they found the pilonidal cyst, couldnt barley walk this time.. so it was drained in the ER, surgeon said "good thing you came when you did you were full of infection". So they kept me in the hospital for observation.. Went home and everything was fine... until 2002 when I started college. I went to the ER, and again it was filled with infection.. this time the drained it good, or lanced I mean or so I thought.. gave me some morephine as well... What a wild ride, felt very warm and dizzy, I asked the nurse is this normal LOL.. and again they sent me home.. This time it need packed after the lancing, of course that was painful.... very painful... Now the year is 2004 when I had the pilonidal cystectomy.. the doctore said he had to go way down to the bottom of the bone and remove and scoop it out he said... I am glad I wasnt awake... LOL I went home it took 1hr and 20mins to remove and then sent to the recovery room.. I had some coffe and crackers and went to the bathroom so I could leave.. that is the rule not eating a peeing no leaving.. that is something I learned while going to medical assisting school... Went home wasnt in too much pain.. but that was thanks to all the medicine at the hospital... so week goes by, went to post op everything seemed fine until the next day I start draining.. I was alramed... Learning before sutures arent suppose to drain.. So I kept gauze pads on it, changed it about 3x a day... I was freaking out by the time saturday came, it was draining so much I didnt know what to do.. So I called my old instructor at home and said is this normal? she said yes and no.. as long as there is no fever and swelling, there is no infection.. she was right.. So that is where the begining of my story begins.. it is still being packed, still is draiing but not nearly as much. before it was running down my legs.. so I am thankful that is not happening now. Cause I start a new job next week... if you have any questions email at wildman15012@yahoo.com would love to hear from you all.. and thanks for a wonderful site very informative..

Date:

September 11, 2004

Story

Hello. I am a 23-year-old male college graduate, currently waiting employment. ;o) I guess my story is a little less typical than other people's on here, but here it goes. Around the end of May this year I began to notice bleeding on my underwear. Thinking it would go away because I had pulled out an (please excuse the description) buttcrack hair, I let it go. For the most part it did go away and my life returned to what I consider normal. By mid June I began to notice more bleeding of the same amount on my underwear. This time I became more concerned because the bleeding was accompanied by a small amount of pain. Thinking I had hemorrhoids, I began using various generic versions of Preparation-H gels and creams, which seemed to take care of the problem again. I also made an appointment with my primary care physician (P.C.P.) for a physical and examination. The pain lessened and eventually went completely away. The day of my P.C.P. visit came and my doctor could find no evidence of any hemorrhoids to speak of, which began to puzzle me. When I asked him to look "higher up" he immediately said he saw what looked like Pilonidal clefts. I had absolutely no idea what he was talking about. At this point, I should have begun searching the internet for a site with such great information as this, but, alas, I did not. I got a referral to visit a C/R doctor later in July. The day of my C/R doctor visit came. (On a side note, when my C/R doctor came in to the "Rectal Room" [which was littered with stainless steel contraptions whose use I don't want to begin guessing] he said "Oh I see you are in the Rectal Room. You must have something wrong with the tailpipe." Little did I know....) After examining me (and showing my clefts to a new female nurse, which was a little unsettling when your ass is flapping in the breeze) he informed me I had Pilonidal cysts and would need a cystectomy. He told me he performed Marsupilization and among other things, a date for my surgery was set. On Aug 29, I had my surgery. I came into the hospital and changed into one of those wonderful hospital gowns and the nurse came in to hook me up to an IV and the anesthesiologist came in and told me I'd be under general anesthesia. Not long later, I was wheeled into the operating room and shortly after that told I was going to be getting the "joy juice" now. The next thing I know I'm in the recovery room having my bandage changed and generally feeling achy and numb below the waist. The nurse came by and did the old "On a scale of 1-10, where would you rate your pain?" question and gave me an appropriate amount of morphine. Eventually the decision was made to wheel me back into the room where I'd come from earlier and my family met me there. I was given two pieces of toast and some ginger ale to eat and drink. I'm guessing about an hour or so later I left after having been given some Vicodin for pain. Anyone who has had this surgery yet will probably agree with me how you grow to be great friends with Mr. Vicodin later on..... ;o) It's now S+12, soon to be S+13 (I use the NASA style designation, meaning Surgery plus 12 days, etc. Why not? It's like a rocket launch!) I'm using the traditional packing methods and everything appears to be going fine so far. I have not read an account of anyone in here who has had marsupilization for the purposes of comparing recovery time. Marsup. is supposed to cut recovery time down by a few weeks vs. regular open healing. Moral of this story= BE INFORMED. I feel I should have known more. Most doctors will be great at diagnosing but will have the attitude of "ok, now go and heal. See you in a month." when it comes to recovery. I had a nurse come in (before my insurance company told her to buzz off as "unnecessary") to show my father how the change my packing,etc. She was a great help. More power to those people out there who change their own packing!!!! HOW DO YOU DO IT?? Good luck anyone who is going to have this and good healing to those in recovery! God Bless!

Date:

September 11, 2004

Story

Hello, I’m 24 year old female, who has had pilonidal problem for about 4 years now. I never thought it would be such a ‘pain in the ass’ since it started to immflamate every month. In the beginning it was just a swollen thing which I had lanced and then all the trouble went away for another 6 months. I thought “hey, I can live with it” because I was terrified with the surgery. This year it happened every month and I was really fed up with it, I couldn’t stand the pain, lacing and wearing the package for at least 7 days, and about the social life??? ;) It was the time when I decided to go to the hospital. I had to wait about 6 weeks for a free bed. When the day came I packed my things and went to the hospital, where I got to know they still don’t have free beds and I would have to wait another 6 weeks for the surgery. This was it! I took my savings and went to the private clinic. The surgeon explained me everything that will be done during the operation and afterwards. Since I found this Website she was amazed with my knowledge about the pilonidal disease, but as I had the immflamation she said I couldn’t have the surgery then, because it had to be healed, with no pus in it. And what was important I had to quit on taking contraceptive pills for at least 4 weeks before the surgery. (they make your blood coagulate faster, and it’s dangerous while you cannot move for a longer time) The decicion was that I would have the operation on the 1st of September. During whole August I was visitng my surgeon every day or every two days to have the medicine injected into the cyst and to make it heal faster. All this time I was still terrified with the surgery and what I was the most afraid of was the spinal block. The moment of injecting the medicine into your spine. The doc told me that it's much safer than the general aneasthesia and I will be given a sleeping pill to make me feel more relaxed before and during the operation. This was not enough. I was still terrified. The day of the surgery. I arrived at the clinic at 12.00 - 2,5 hrs before the surgery. The nurse showed me my room and explained to change clothes and wait for the other nurse to messure blood pressure etc. Then the aneasthesiologist came and explained everything that concerned spinal block. I was given the sleeping pill and told to wait until they will come to get to the surgery room. During this time the surgery was delayed 1,5 hrs so I fell asleep and woke up when my surgeon came in. I told her I fell asleep and I thought the pill didn’t work already, but she assured me everything was OK. They took me to the surgery room, well I walked myself, I was conciuos, maybe a little stunned. They told me to take my pijamas off, sit on the table and bend as far as I can to strech the backbone and let the aneasthesiologist make the injection. The nurse sticked something on my chest and on the side of it to check on my heart action, put a straw with the drip in my wrist. Then I was given two small injections to numb the skin on my back. They felt like the mosquito bites. I asked the nurse to hold me a little because I was afraid I would fell of the table. She stood in front of me holding my arms and tried to chat with me about my tattoos ;) While having a little chat the aneasthesiologist did the spinal block injection. I couldn’t believe it was it, there was no pain at all, frankly speaking I missed it when I was talking with the nurse. Then they told me to lay down on my back and wait until it works. After a few minutes I didn’t feel a thing from my waist down, the doc checked it with the needle. After that they rolled me onto the surgery table. Still I was totally aware of what was going on. I was lying on my stomach, had a pillow under my head, which was on a side so I could watch my life parameters on the monitors. I felt very comfortable, no stress. The nurses where all around checking on me, I heard surgeons talking to each other, the atmoshere was very good. When my doc cut out whole cyst, she asked if I wanted to see it. So I did. Nothing special. Little piece of flesh that shrinks immediatelly after cutting out. The surgery was almost finished. They just had to make some stiches, but the wound wasn’t completely closed. There was an opened space left to let the pus out. I was rolled back on my bed and “travelled” back to my room. The surgery took 1 hour. At about 5 p.m. I was lying in bed, listening to my favourite music (I took dickman with me ;) I was still numbed from the waist down. I was told not to lift my head, because it will cause a massive headache which is very dangerous. Then I watched my favourite TV series “Friends”, took a spleeping pill and until the next morning I had 3 drips and 2 antibiotics sucked through the straw. I woke up feeling fine. But I still wasn’t allowed to get up myself. The nurse and doctors came to see how I was doing and then I was let to go to the bathroom under the nurse’s eye. I had no dizziness after the spinal block, my legs were OK, the numbness was gone and I didn’t feel pain. The doctor’s decision was to let me go home. Now it’s the ninth day after the surgery. I’m seeing my surgeon everyday. I’m doing fine, but I am not allowed to sit until the stiches will be taken out (after 14 days). To be honest, it’s impossible not to sit at all. I thought if I didn’t feel pain everything was OK. I was wrong. I tore two stiches (out of six) and the doc said I definatelly cannot do this again ;) or it will heal much slower than expected. I hope my story will help other people make the decision. Get rid of the cyst as quick as u can! The spinal block does not hurt at all! Just remember not to lift your head afterwards. U shouldn’t worry about it. The surgery is piece of cake, more difficult is remembering not to sit if u have atiches and getting used to the aftercare. I hope everyone will have such good memories from the surgery as I do :) Take care. P.S. Sorry for any spelling or vocabulary mistakes, I’m from Poland ;) Agnes.

Date:

September 08, 2004

Story

Hi, I'm an 18-year-old college freshman. About a week ago, I noticed what I thought was a pimple at the top of my butt crack (excuse me for being so... blunt, but you all know why you're here), and basically decided to ignore it. But then I got really sick--I had a fever and dizzines, etc. My dad came to my college to take me home. I guess a four-hour car ride is enough to cause a pilonidus cyst to act up, because the next day I was swollen, leaking pus, and in extreme pain. I figured I could ignore it, but the other night gave up and told my mom. I went to my doctor who immediately diagnosed the problem and have since been referred to a surgeon. I've read a lot of the stories here, and let me say, I can sympathize. I suppose I'm going to be missing a lot of school because of this, but since I can't sit, stand, walk or lay down without excrutiating pain, I guess I can tell the school to just "deal with" my absences. Good luck to all of you with pending surgeries or recurring problems! Sarah

Date:

September 08, 2004

Story

I'm a 25 year old female. The first time I had a pilonidal cyst was about 4 years ago. The first time the inflammation went away only by medical drug. But, 2 years later the inflammation came back. The doctor lanced it. It's such painful. I think it's the worse pain I ever felt. The doctor suggest me to see a surgeon to remove the pilonidal cyst. But here in Canada, we have to wait for about 3 to 4 month to see such a specialist. So, i've got infected again and get it lanced again (this time it was less painful because i take two Advil a painkiller without prescription). Now, I have see a surgeon and I'm waiting to get the operation (it's suppose to take about 3 to 4 months to schedule the date because of the lack of operation room and specialist in hospital). I'm afraid of the operation but I think that is better than live with this. - The doctor told me that is was better to remove it when it's not infected. - And yes, I observed that the pilonidal cyst was reaction to my period. I don't know if it's my imagination, but it's seems to get infected but disapear 3 days after. Thanks S.G.

Date:

September 06, 2004

Story

Hello..This is for those who choose to live with it!!I am a 43 year old male and I have been living with this Pilonidal cyst thing for a long time now...I choose to just live with it unless I become very sick from it and have to go to have it removed.I can remember when I was a young man dealing with it when it was rather small ,now it is large and drains always it seems. I use sanitary pads to keep the draining infection away from the area (the pad will absorb it)and it helps to keep the area clean also. I am not embarresed to use them nobody knows..except my spouse, and she doesnt mind ,she had one removed in her teens!!So she always asks how i can stand the thing! I use a bath instead of a shower mostly ,there is no odor.. some discomfort , I have started taking Vitamin C and zinc ..semms to help the imflamation go down..but i have had it so long now that sometimes I dont really notice it,it has become a part of my life.I dont let it get in the way of things I like to do . I was a very good Bodybuilder for about 20 years of my life ..Im not anymore ..and I stay very active and I am still in very good shape for 43 ..I still got the six pack abs and Big arms to boot!!Soooo...If you choose to live with it...get that thing draining ,keep it clean, use a shower scrub thing,take vitamins,keep healthy,and always keep up on the information about it, try new things ..and always keep thinking that someday i will find something that will work and it will go away. Heres to a perfect ass!!! Good luck!!

Date:

September 06, 2004

Story

Well, I'm a 20 year old female who has had excruciating pain from a pilonidal cyst (which I have not had removed yet). It started one day, I believe my senior year of high school. At first I was just having a dull pain right above my crack. I didn't tell my mom about it because I thought that I just hit my butt somehow and that the pain would go away.... boy was i wrong!!! 24 hours later I couldn't move due to the pain. My mom rushed me to the emergency room where they said they couldn't do anything for me because it was not ready to be lanced. At that point the doctor just told me it was a boil and to go home and put warm compresses on the spot and that it would *pop* when it was ready. He also advised me that it would not happen again. Being about 18 years old, I was repulsed by the thought of having an infection on the crack of my butt that was filled with pus and hair follicles. How could I have something like that???? I was in cheerleading my whole life and always had good hygiene. Well, the doctor was right about it popping. About 3 days of missed classes it finally popped. I got up to use the washroom and in the process I almost stepped on my cat and had to move quickly, ended up falling on my ass. (damn cat!!) All of a sudden I smelled the most disguisting, retchid odor of my life. Thank god I was laying down on the floor because everything started going black. Knowing when I am about to faint (because I faint from needles and shots) I screamed for my mom. She had to bring bleach to stop me from passing out. Well, after that I just kept it very clean and put bandages on the wound for a few weeks. But the doctor was wrong. It has come back several times, seems to be at the worst times, and always feel pain on my back side. Like I said, it always seems to be inflammed at the worst times. Here are some stories that you will all probabaly laugh at (which I laugh at now but didn't then). It also explains why I have not yet had the cyst removed. I had a few other episodes before I went to college. (again, my first one was my senior year, so within a year I had 2 or 3 times where it had to be lanced) I went off to college and joined a sororiety. We have what we call Inspiration Week. I was still a pledge. All pledges during this week stay at our house the last 4 days of the week. The other 3 nights you must be at the house for scheduled activities. The past few days before the week began, I knew my cyst was getting irritated again. I had to miss the first night of i-week, having my sister drive me to a hospital with her boyfriend. To make matters worse, I always get really sick once a year. This just happened to be the time I had a 102.7 fever and hallucinating!! At the ER I asked if they had an extra bed where I could just lay down, because I couldn't sit comfortably. (which at other hospitals they kindly allowed me to lay in a bed while waiting for a doctor). The nurse looks at me and says that they don't have any extra. All of a sudden I start balling my eyes out. I was crying because of the pain and for the emotional distress. And I'm sure you all know what I mean when I say emotional distress. You can't do anything!!! If you lay on your side you have pressure, if you lay on your stomach you have pressure..... it just depends what part of you can handle the pressure!! The worst part was that after they lanced the cyst, I had to go back to my dorm room! With this incident I couldn't have surgery because I was 3 hours from home and did not feel comfortable having surgery without my parents and wasn't too happy with the medical facilities in Peoria, IL. Being from the Chicago area I would much rather find a colon rectal surgeon who has great credentials. I ended up leaving school after my first semester. I came home, found a great job and continued with my life. After about 6 months of starting my job my cyst was inflammed again. After a few debates with myself I decided again it was not a good time to have surgery. Although my benefits began the first day I started my job, I did not think it was a good idea to take a few weeks off. I was 19 years old, and I felt I had something to prove because I was the youngest (by a few years) at the company I was working for. I wanted to at least be there for a year before I took any medical leaves. So once again, I just had my pilonidal cyst lanced. Here comes the good story. In April of this year I took a well deserved week vacation. My family and I planned to go to Florida. We always go to a place called Longboat Key, Fl, which is a great place to do absolutely nothing! I could not wait to look at the view from the condo we rent every year, lay on the beach and sit on the balcony looking for dolphins. A few days before we left I once again felt the annoyance of my pilonidal cyst. I remember thinking, this couldn't be happening!! The pain was going down a little, but then the flight from Chicago to Florida killed me. When we got to Florida I got to enjoy the rest of the afternoon. There was nothing I could do, I knew it wasn't ready. The next day the pain was horrific! I couldn't do anything. I couldn't even lay on the beach chairs because the way that they curve wasn't giving me the best feeling. So I stayed in bed all day. I went to the ER the next day, after visiting a physicians office (which I left once I went in because of the cleanliness of the place). The ER turned me away and said it was not ready. So once again there went another day of my vacation laying in bed! I got up the next morning and I didn't care what they said, I was getting it lanced today!!!! I wanted to enjoy the rest of my vacation. So after pleading with the doctor, I once again had it lanced. The rest of the day I was on pain killers (the best part of my vacation), so there went another day. The next day I got to lay out and enjoy the sun for awhile, but could not go in the pool or the Gulf of Mexico (which I love the water). The next moring I had to go back to take the packing out. I got there and they said they had to lance more. They did not give me any medicine this time, so I felt it all!!! As the doctor is squeezing everything out of me, I'm biting the pillow with tears streaming out of my eyes,and kicking! I couldn't help it. I ended up kicking the doctor and sliced into me even more. I screamed more than ever, I think people could hear me within a 2 mile radius!! So once again, I went back to the condo and slept the rest of the afternoon. I ended up only able to enjoy the weather 2 days of vacation. But once again, I could not have surgery. I am just waiting for the time when I can have surgery again. My mom believes that I can only have surgery when it is inflammed, I think differently. Can you only have surgery when the cyst is infected? I also have another question for females (sorry guys, you may not want to read this). I notice during that time of the month that my cyst gets irrated and I think it is going to get infected again, but usually never does. Does this happen to anyone else?????

Date:

September 04, 2004

Story

Im still stalling the op. Its closer to the surface and im treating it with tea tree oil and popping it with a needle every now and then and keeping it covered. im takiing lots of pure honey and hopiing that when summer comes the sunlight will do it some good too. It is what I would call level 3 for me. My level ten was when it was deep and large and red and sore. Im trying not to sit for long periods and trying to keep off the bike. Cotton undies as well. But then again it migeht just repeat the cycle. Il llet ya know. Norm

Date:

September 03, 2004

Story

Pilo Poetry Here I sit with the greatest of care Being very self conscious of my dairy air All humility is gone without care At my backside did 4 nurses and a doctor stare. Waking up realizing I had lost some time Where the hell am I was going through my mind. One minute I was talking to the Doctor as she injected the anesthetic, Next thing I knew I was on my stomach in a different room feeling kind of pathetic. Here it is the second day and my poo hasn't come, I fear through the roof I'll go before it is done. On my rear I used to have some hair, Now it really is very bare. My dear wife Meilan took special care, Removing everything down there. Changing the dressing she appeared to panic, I tried my best to keep her calm and from being frantic. Oddly enough changing the bandage is easier on all four, If somebody peeked in would they find this gross or a bore? Come to save the day is Vicoden, A wonderful drug that has become my best friend. Through digital photo's I can only see, what a doctor named Beverly did to me. With skillful hands she cut it away, So that I may once again have a normal life some day. Still as I recover I must not get bitchy, Because right now the tape is really damn itchy. My rear is once again on fire! I need to hunt for my special friend. Dreading the day when the prescription will end. Hoping to create a smile from this little ditty, To others that have lost a great deal of humility. Don't laugh too hard that hurts too! I'm on the day after the surgery and feeling kinda strange as ya'll can tell. Have a strange urge to exchange wound photo's so we can all go eeeewwwww. If you are fealing as odd as I am or have a Pilo Poem of your own send it to me at bielbyr1@yahoo.com As you can guess I ain't going anywhere for a few days. If you show me yours I'll show you mine ;)

Date:

September 03, 2004

Story

READ THIS IF YOU'RE AFRAID ABOUT YOUR PROBLEM!!! by Ricardo Melo - Portugal First of all, I'd like to praise Sasha for this amazingly great website which I've been visiting for almost a year. By the way, I love the restyling you've done! :) (By the way, Sasha, once I promised you that I would translate this site into Portuguese, hoping that I would do it during recovery. I didn't. As I had to lay down or be standing up, I had no position to be working at the computer... maybe someday I'll do it) I'm a 24 year-old male from Portugal, which is, as I got to know lately, one of the 4 countries in Europe with the highest incidence rate of Pilonidal Cysts (the others are Spain, Italy and Greece - all Mediterranean countries). The presumable explanation is that men are much more hairy in southern Europe than in northern Europe. It's the latino spell! :) I first noticed a bump on my buttock maybe 5 or 6 years ago. Didn't care much about it. Later it began to itch and bleed sometimes. And it hurted. Oh yeah, it hurted! On October 2003 I noticed that it had become a kind-of-a-hole, which I later got to know that it was a sinus hole. But worse, what bothered me was that it was bleeding almost everyday, and it also became quite dark. I decided to go to my doctor and he said what I already knew: I had a Pilonidal Cyst (which is usually called Sacro-Coccygeal Cyst over here). As the Portuguese National Health System is having some problems with longs lists for surgery, I had to wait until April 29th for the surgery. Surprisingly or not, my biggest fear was not "The Knife", but instead it was the anesthesia. I was really afraid that I would have some kind of complication with it. I had the general anesthesia. Hopefully, it went all ok. I didn't even got the usual vomiting after waking up. I woke up practically with no voice, since I was entubed (they put an oxygen tube down your throat - don't worry, it is done AFTER you're asleep, you don't feel a thing). As for the place "down there", all I felt was some kind of burning, which they said was normal. I went through the rest of the day almost without pain. Slept in the Hospital. Went home the day after. Then I started to change dressing every other day. But, after something like 10 days, my doctor said that it was beginning to become infected. In fact, it smelled really bad whenever they removed the dressing. I went back to the Hospital and my surgeon did a quite deep cleaning of the wound (THAT HURTED REALLY BAD!), prescribed my an antibiotic, and told me to start changing the dressings at the Hospital, every other day. Since that day, I had a slow but painless recovery. I went to change dressings for a total of eight weeks. But five weeks after the surgery I was already doing almost everything (back to work, back to driving, ...), although working out had to restart some time later. It's been now four months after the surgery and all I can say to those who suffer from this disease is: GET SURGERY! I don't know if this will come back, but if it does, I'll absolutely meet The Knife again, because all I know is that now I have no pain (some itching and "pinching" sometimes, but that's normal), I have no bleeding (I do not need to fear going to the gym and having to change underwear when nobody's looking), all I have is this (somewhat) ugly scar on my rear-end, that I have to take care everyday, and for me that care consists basically in cleaning it very well during the daily shower with a smooth bath cream, and then flushing it out very thoroughly with the shower, so that no loose hair survives in that area. And that's pretty much it. The best advice I can give to those who already have scheduled their surgery is: think positive! I believe that being happy even accelerates the healing process. See things as they are: you have a disease, you go to the Hospital and you treat it. Then you no longer have a disease. And you live quite better. No, you live A LOT better. End of story. Oh, I forgot: one of the best advices I can give to those who will get surgery is: don't push yourself during recovery! I heard of people that start doing everything just a couple of days after surgery. That's stupidity at its highest level! You really have to rest, to move the less possible, etc. Lots of rest, efficient dressing changes, hygiene, and a high protein diet with vitamin supplements - that's all you need for a quick, painless recovery; and, most importantly, for a ultra-low probability of recurrence. Best regards to all.

Date:

September 02, 2004

Story

Here I sit, scared to go to sleep for fear of tossing and popping the bug, most definitely in pain and damning the pilonidal God. I'm not a hairy dude, I'm not in the military and I am not some wackjob weirdo chick from outer space with a crack full of rose-smelling goo. I am in my friend's basement at 4:30 am...I'm 20 and I have a college class in 3 hours. I had surgery 3 years ago. I went to the hospital to have it done by a general surgeon and I even had to have an epideral for it. Pretty severe, I was told. Anyways, 3 years full of sports and steps and here i sit with another woozy feeling. My friend (true friend lemme tell ya) has already tried to pop this thing, but the head is closest to the scar tissue and nothing we have will pierce the skin. Anything else is just too weird. She's now resolved to sleep and I sit here resolved to conversation with others suffering. No insurance, 4 o'clock in the morning on a Thursday at the ER with a pilonidal(pleeze!), and what's worse is no one to sympathize. The site is right about one thing, I wouldn't be here if it wasn't for this sebum (don't make a habit of researching about showoff pimples). Anyways, I will probably be undergoing surgery soon this next week or so. This one is like old faithful only with a sense of humor. Wish me luck! If you are like me and no one to empathize with in your misery, just think about me and how i'm sitting like I got hemorrhoids and making the same face your making right now, too. Good luck to you and just remember, God would never be so cruel as to have these things in Heaven. :) happy trails ~Mary4003@yahoo.com

Date:

September 01, 2004

Story

Hello, just thought i'd add my two cents to these stories!. I was diagnosed with the pilonidal cyst during the last two months of my military service. Started the usual way-pain on my tailbone and stupid me i thought it was from my horse bucking me off the day before so i let it go. next day i couldn't walk sit lay down nothing. so i went to the base hospital, doc took one look at it and had me in surgery that afternoon. talk about not being prepared :) I stayed there for three days-they said due to the size and amount of infection. i had the incision and drainage method done and felt better after the surgery with no pain meds then i did before i went in. I could actually lay on my back!!!!! well then i got out of the military and made a 3000 mile drive back home when glory be the scar got inflamed and popped, i woke up at 2:30 in the morning in a puddle of blood. not recommended. went to va medical center and have spent the last two months having the doc cauterize it with quote "the magic fire stick" (silver nitrate). didn't work. as i am writing this it has come back in the same exact place and i am standing up at thr computer doing research! Guess i'm gonna be one of those lucky people who has multiple surgeries. God bless the person who developed this site, i haven't found anything with this much information in it! Well i've yacked your ears off long enough, and i think it's time for beer thirty. Good luck to everyone else out there. ps. I am a 24 year old female, so to the girls out there dont' get embarrased at the thought of having to show off your "nether regions" to a male doctor. I had about 5 doctors so far and countless nurses and techs. You get used to it:)

Date:

August 30, 2004

Story

Hey all,

I guess I’m a veteran at this. I’ve had Pilonidal cyst removal 3 times, and might be working on my 4th! I had my first removal on Sept 15, 2002. Second on April 18, 2003, this was 4 days after my 15th birthday (I’m now 16). I just got done with my 3rd surgery on August 6, 2004. The reason I might have to have the 4th one so close to my most recent removal is b/c I’m not healing well at all. None of the recurrences are the doctors fault in my case, by body just doesn’t know that it needs to stop. I’m not posting this to scare anyone, but to let you newbie’s know that it CAN (but in most cases doesn’t) come BACK! I also wrote this so I could find out if anyone else has gone throw 4 or more removals. If anyone has questions, or wishes to talk to me, email me at Debater_gurl@yahoo.com ~Kayla~

Date:

August 25, 2004

Story

Hi everyone, My name is Alan and I am a 17 year old male from NY. I am actually writing this the morning of my surgery (About 12:25 AM) for a pilonidal cyst. I will be have an open wound excision under general anesthesia. I have had this cyst for about a year now and hopefully the surgery will go smoothly and cure me of this pain in the butt. I was very sad to see that this site would be down later today...i was hoping to post the aftermath of my surgery but i cant i guess until Saturday. If anyone wants to know how everything went before I post another entry on Saturday you can always email me at f22hawk@yahoo.com. I have been curious/worried about what will happen during the surgery and i would gladly answer any questions anyone has... Wish my luck at 1:00 PM today! ~Alan

Date:

August 25, 2004

Story

Hi all,

Sorry it's me again... I wanted to put my email address up on my story just in case anyone wanted to talk about it; i'd love it if someone would talk to me about it... i dont know anyone with this disease.

my story is the reallyyyy long one august 25th just before this (unless someone put up a story already and it got squashed before mine and this little post)

my email address is:

goddess23@optusnet.com.au

thanks again,

- Kathy.

Date:

August 25, 2004

Story

To my fellow sufferers,

Hi, i thought i might just post my drama with polonidal sinus up here and let you all know what i've gone through. I know this is a really long post but if you can stick with it and read it, you might get some ideas and stuff for yourself esp if you're going through similar drama.

anyway,i'm a 24 year old female in australia and i first got diagnosed with this ugly bum disease beginning of 2003. as with all of you, it started with a little pimple at the top of my bum crack but inside, under my skin. i thought i was going crazy at first but finally realised it needed to be checked out one day (despite all my embarrassment of showing my ass off to the doctor) when my boyfriend cheekily slapped my bum right on the pimple! Ohhhh the pain!!

My mum had it about 15 years ago and i vaguely remember all the pain she went through with it so i was really reluctant to see my local doctor. well, the doc confirmed my worst suspicions when he said that i had a polonidal sinus and that i probably needed to have an operation on it. he informed me that disease thing usually occurs with europeans, particularly with hairy men but told me that he didnt think i was hairy enough for it so it could be caused by something else. well he referred me to a colon and rectal surgeon and he said that it might be simply a matter of cutting it slightly with a scalpel and hope that the infection will leak out. So, in went an injection into the pimple to "numb" it... apparantly it was numb but ohhh the pain when he cut it!! blood and puss splurted all over him and all over my clothes... errr...

A couple of weeks after that little episode, nothing was happening so the surgeon scheduled an op to chop the thing out. it came out in november and i had an average sized hole, similar to the average sized pictures posted on this website. i stayed in hopsital for a few days and then had a nurse come to my house for the next 2 months to dress the hole and pack it. once she stopped coming, my mum continued with the dressing. as clean as i tried to keep it, with two showers a day and all the packing and saline solution going into it, i was "blessed" with an inflection! ohhh the pain!!

Back to the surgeon i went, and in march of this year, 2004, i had another op. he put a little drain in the cavity area and sewed it in there. he hoped that the infection would just leak out. a lot of it did leak out during the month or so it stayed in there but not enough. i went through so many pads during this yukky time and always felt dirty and sticky down there so i had about 3 showers a day to try to get through the day. and after all this, u'll never guess what! yep, another infection!! ohhh the pain!!

Back i went to the surgeon AGAIN and he told me that he suspected that the infection had gotten even bigger and had "shot" to the side, my right side. a sinus had actually appeared on that side and he actually told me that this is actually quite rare and has only ever heard of this happening once before. there were a few options he told me about and this came after talking to a few other surgeons in his field: cutting it open some more and chopping it out again. he decided not to cut the thing open again but to shove two drains in there this time, one in the middle, and one on the right side. so back into hospital again i went in may of this year. i got out a couple of days before my birthday and had a lovely bday in bed at home not able to move much. but guess what... yep, you guessed it... another infection... the thing wouldn't go away... ohhh the pain!!

The surgeon finally sat me and my mum down and said that it seems he had "missed" a tract (or root thingy in there) during the initial operation in november!! my mum was furious... i was simply over it and had no energy to argue how he could've "missed" it. in a quite embarrassed tone, he told us that he would prefer us to see another surgeon and referred us to someone else, another colon and rectal surgeon i think he was but some professor dude so i crossed my fingers and hoped for the best. the professor told me that this is definitely very rare (for it to shoot out to the side) and that he would rather me see a plastic surgeon because of the deformity that will come up if he was just to cut it out. there was heaps to be cut out apparantly and he didnt want me to have an ugly ass.

so off i went to the recommended plastic surgeon who said he himself has successfully done this in the past but also once it wasnt so successful. he described the operationSSS that i would need to have; at least 3 ops and possibly a month in hospital. the first op would be to remove it fully and any tracts that were there, the second op would be a skin graft with the new skin lining the inside of the removed section, a third op to sew it together. he said that it is not usual for the first skin graft to take hold usually so i may need to have a few skin grafts. the best way to avoid so many skin grafts is not to move much and to "be patient". he also said that he is thinking of using A VAcUUM PUMP with some FOAM stuff to speed up the healing process before the first skin graft. apparantly this is some new technology and it speeds it up immensely. he also said he wouldnt mind doing some blue dye thing in there before the op to see the number of tracts in there. anyway, i agreed to the operations by him, mainly because he seemed very genuine and honest with me. i really felt as though this doctor was going to perform miracles on me.

later that day, he gave me a call and said he spoke to the blue dye guy and he didnt think that it would be the best thing to do. rather, the doc mentioned doing a MRI scan. I agreed, and did that a couple of days later. as painful as that was (only because i had to lie on my back which is something i havent done in about 18 months now!), it showed him exactly where the tracts were and where he needed to chop.

i deferred my uni course and prepared mentally for the operations. a couple of weeks later, i went into hospital for the first of my next series of operations. this was in august. i remember having a shock when i first saw the cut and how much he had chopped out. i was feeling fine however and able to get around although there was some discomfort. the most painful time tho was each day when they had to pack it. you see, i detest pain killers, i do actually think they're a placebo (altho sometimes i do succumb to them just to feel better). most of the days i used laughing gas, something that women in labour use so they dont think of the pain. the nurses always mentioned morphine but i tried it once and felt crap afterwards for hours and it didnt alleviate the pain a bit. you see, i suffer from panic attacks (so ive been told by many!) and have a tendancy to abuse people who have rough hands and make the time even more painful! so laughing gas was probably necessary for me even tho i laughed and cried at the same time.

anyway after a few days of this, the doc decided it was time for the vacuum pump. it was quite similar to the packing, just black foam instead with a tube stuck to it on one end and the other end attached to a vacuum pump. the pump stayed on for a few days, i cant really remember how many exactly but each day new foam was put in. bit by bit though, i was getting more stiff, i felt very restricted by the pump and wasnt able to turn much.

finally, it was time for the skin graft. the surgeon took the last foam under anaesthetic and did the graft. the donor site was my leg and when i woke up, i remember freaking out about the leg. it was burning, felt like i was in a fire. there was a lot of skin missing and it upset me a fair bit. my bum felt ok, not much pain, just my leg hurt a lot. i remembered the doctors words during the consultation with him that the graft takes better hold if i dont move much and try to be patient. so i didnt move, i hardly moved. i was adament that i would not get another graft... i couldnt stand looking at my leg...

anyway, my neck got severe cramps and my back got sore, i used a lot of heat packs during this time but stuck in there. the doctor saw me every day, except on sundays. he even came in on saturdays in casual saturday clothes to make sure everything was ok.

i went under anaesthetic another time possibly for another skin graft and for him to undress the thing (so i wouldnt go thru the same pain as before). he came early the next day at 7.30 to tell me that he was so suprised that the graft had taken such good hold and that there was no need for another. only two little finger nails hadnt taken hold apparantly. he said that he considered closing it up but didnt have the heart to: he wanted to make sure that over the next 6 months that no infections or new tracts appear. i was very excited; there was a glimmer of hope!

i was in hospital for two weeks in total. i am now at home and have been for 2 weeks. i wasnt able to walk properly for the first week at home and used crutches. i am walking fine now and can sit up. ive started going out a bit here and there and am able to do more and more each day. i see him each week and he is very happy with my progress. my leg looks ok now, still quite pink but its obvious the skin is healing well. apparantly there will be no scar there, just some discolouring, a little whiter than my normal skin. the nurse has been coming every day to pack my wound and puts some cream that the doctor ordered on the bits that the graft didnt take hold. those little bits hurt a lot though. thank god for the graft, if it wasnt there the whole thing would be very painful.

i am sure that there will be no problems or more dramas in the next 6 months. he will close it up and it should be the end of all this drama. for all of those people that have read this far, thanks for taking the time to listen to my story. i feel like its a gruesome story straight out of the soapie days of our lives. i'm pretty sure that not many people would have had to have gone through as many operations as what i have had, i've lost count (6 or7?) but i can tell you that there is definitely light at the end of the tunnel.

i must admit though, i am realllyyy glad that i did NOT find this website BEFORE the first operation or i would have been absolutely terrified and dont think i couldve gone through with it. i wouldve had a million panic attacks. if however, any of you have read this BEFORE your first operation/s, PLEASE insist on a MRI scan!!! DO AS MANY TESTS AS POSSIBLE TO FIND OUT EXACTLY WHERE THE TRACTS ARE!! i dont think i wouldve gone thru all of this drama if the first surgeon did a MRI. also, ask about the vacuum pump, if you're on private health insurance i think its better for this cos i think vacuum pump is quite expensive.

i hope what ive written has been of some help to at least one person out there. i honestly wouldnt wish this bum disease thing on my worst enemy. actually... i saw a photo on this website of a little baby BORN with this thing!! i wanted to cry for the bub, i felt so bad...

Anyway, best of luck to all my fellow sufferers. i know i have talked heaps about pain, but honestly, if i can get thru this, anyone can, trust me. plus i think its worth it, no one should have to live with this thing.

p.s. whoever created this site, is the best because i have realised i am not the only person in the world with such an embarrassing problem.

p.s.s. this whole drama has been such a pain in the bum! no pun intended :)

anyway i better get my ass up and stop sitting on it, need to lie down.

Date:

August 25, 2004

Story

Long term story

I didn't know I had a pilonidal cyst until the summer I graduated from high school in 1968. It was a major infection and took 2 weeks to subside. My doctor told me what I had but didn't tell me what I was about to experience. I started college in the fall and the cyst was in constant pain and draining most of the time - I was running a low fever constantly - by December it was excruciating. I had an closed excision during Christmas break and was in the hospital for 2 days. It healed in just a couple of weeks and I was pretty much trouble free for four years.

Shortly after I graduated in 1972 it started to flair back up although not as bad as it had been. However, it continued to get worse until I had a major infection in 1982. At that time I had a open excision which took about 10 weeks to heal (still a two day hopital stay).

I have been pretty much trouble free since then. The scar tissue still gets sore if I slouch in a chair to long and it sometimes will crack and has gotten a surface infection but it has not developed a cyst with a sinus now for 22 years.

My dad and my brother have a sinus but neither has had an infection. My son was born with a sinus and had a small infection but it seems to have cleared up with a simple lancing and he uses a hair removal creme every few weeks. My vote is on congenital problem but who knows (His 5 month old son does not appear to have a sinus).

This is a annoying and painful affliction but you can live with it. Hope your longterm solution is as successful as mine has been.

Date:

August 25, 2004

Story

hi, i am 20 yrs old, and i just recently got my first pilonidal cyst. I started to feel like i had a bruse on my tailbone, and i got my boyfriend to look at the spot b/c i didnt know what it was, and he didnt see anything. A few days later the pain got worse, i couldn't walk or even get off the couch. I didn't understand what was going on, i thought back to see if i hit anything with my butt to see if i got a bruse from that or something else..As the day went on i couldnt do anything, then my boyfriends mother, told me that i might have a boil or cyst, so i started to put warm compresses on my butt with some drawing save, it made it feel a little better til this past monday i couldnt take it anymore, i went to my doctor. He pulled apart my cheeks and starting pushing really hard, which made me scream and cry. he had said that i had a "pilonidal Cyst" and that he will get as much as he can out, so he knumbed it and started to push.. That was the worse pain i ever felt in my life. I never want to go through that pain again. He said that i will have to get the rest of it surgeically removed, which i am somewhat afraid off b/c i heard that is very painful. I never surgery before, and i dont know what to expect. So can someone please tell me what to expect? email is tracage16@yahoo.com Thanks Tracy

Date:

August 25, 2004

Story

Hi there,

A story from Europe, where people and thus problems are the same, but solutions appear to be different. I am a 24 year old Dutch male Ph.D.-student, sitting all day long at my desk. A probable cause there!

Monday Aug 2: I expercienced some pain in sitting and inspected the source. I found a small bump there, with a small hole next to it. It worried me. Friday Aug 6: I went to my doctor and told him what I saw and felt. Without looking at my behind, he told me that it probably was a 'Sinus pilonidalis' but he would just take a look for confirmation. He made an appointment for a specialist to see me. Monday Aug 9: At the hospital, with the specialist. He confirmed the diagnose my doctor made and booked an OR. The pain had gone away dureing the last few days. Friday Aug 13: Surgery at 9 o'clock in the morning. A deep sleep and a bit of pain afterwards. At 4 o'clock in the afternoon I could home. The wound was clean, so the surgeons closed it. Two painkillers prior to the operation (total 1 mg Paracetamol). Afterwards I never needed any. Saturday Aug 14: I lied won all day. Sunday Aug 15: I lied down all day. Aug 16-18: Walking, sitting and lying around, watching some TV. Aug 19: Back to work. Aug 20: Able to ride a bike Aug 22: Able to ride a car to the hostipal where stitches were removed. Aug 26: The wound is still a bit moist at the top 5 mm (quarter inch) but the lower 4,5 cm (1,5 inch) is dry and closed. Some itching.... I have taken up my normal life 24 days after the daignosis. So for all of you who have to go through surgery: It does not have to be a big problem.

B. Penders (Netherlands; b.penders@zw.unimaas.nl)

Date:

August 23, 2004

Story

I had my first pilonidal cyst over a year ago, but only had it removed last week. The lump popped up at the very top right of my uh.. "natal cleft" I believe is the medical term (ie crack) when I was doing revision for exams, so I put it down to sitting on a hard chair for too long. I was quite embarrased and too scared to tell my mum, and it went away after a couple of days anyway. It didn't discharge, the swelling just stopped hurting and then disappeared as quickly as it had appeared. This happened again the next month and seemed to recurr on a pretty much monthly basis, always the same pattern. I thought as it was correcting itself it couldn't be anything major.

A few months later I moved to uni and the next time it happened I went to the doctor as I just wanted to know what it was. She said it was to do with an ingrowing hair and mentioned some medical term which I didn't quite catch but now I think it was pilonidal cyst. She referred me to a surgeon but by the time the appointment came the swelling had gone, and besides I didn't want surgery so far from home.

For ages after that it was OK with only a couple of minor flare ups. Then about 10 days ago, on a Thursday, it came back, luckily while I was at home on my summer break. I knew from about the second morning of having it that this time it was different. By the Sunday I could hardly walk so my mum took me to an out of hours doctors surgery place where the doctor said it was infected and gave me some antibiotics, but they had no effect. So I did my research here and found out about bringing the abscess to a head with heat, and by the Tuesday it seemed to be coming along nicely.

I went to the doctor on the Tuesday morning and she immediately referred me to the hospital where I managed to have the op done the same day. It was a general anaesthetic job and I spent the night in hospital but I was out the next day. I'm still having the district nurse round every day to change my dressing but they say it's healing really well.

Living with a pilonidal cyst (and with its removal) wasn't nice but my overnight stay in hospital on a ward with people who were having proper major surgery on tumours and bowel problems made me realise that there are definately many infinitely worse things that can happen. As painful and embarrasing as this condition is, it's important to keep it in perspective.

Date:

August 18, 2004

Story

Hi my name is Casey and after living with my Pilonidal Cyst since September I finally had it removed. Just to let you know a little about myself, I am a 25 year old male and had never been sick or anything in my life. I work as a commercial fishing boat captain in Alaska. I have endured and seen a lot in my career, and to think that something that I thought was a bug bite at first turned into some of the worst pain in my life is crazy. I had just returned home in September to Washington from being up in Alaska for 5 months when I first noticed a small lump around the area of my tail bone. It didnt hurt at first but as weeks passed and it didnt go away it began to ache. Being the tough guy that I thought I was I put it off thinking that it would go away, but it didnt. I finally decided to go to the doctor and see what it was. By this time it felt like I was growing a tail. This lump felt like the size of half a golf ball. After waiting in the DR.'s waiting room for a hour and a half I finally got into see him. It took the doctor about three seconds to look at it and tell me it was a Brown Ricluse spider bite. He gave me a perscrription and I went on my way. After I took all the pille he perscribed the mass in my back burst open and began to drain. It was kind of embarassing. I had to cover it with band aids all the time and my t-shirts liiked like I was shot in the back every time I would take them off. Needless to say the medicine didnt work and the thing never went away. It was in Early December when I decided to try another Doctor. This time it only took the doctor about two minutes to tell me I had a Pilonidal Cyst. I was referred to a surgeon and it was decided that it needed to be cut out. The draw back was the doctor wanted to be paid $700 up front. Althogh I have insurance, It isnt the best and my deductible had to be filled before they paid 70%. I didnt want to shell out that much money at first. But here we are today. Almost a year after I first noticed the lump I paid the money and got my cyst cut out a week ago. I went with the open style of surgery, where they leave the wound open. Yeah it hurts like hell but the cyst is gone. It is a pain in the ASS(literally) but I have to change out the bandage quite often. Hopefully in about 8 to 10 weeks I will be back to normal. I am glad I got it taken care of and recommend that you dont wait as long as I did to have it done. With proper care I think I will be able to head back up north to do a little halibut fishing. Take Care...

Date:

August 18, 2004

Story

I just had a baby on August 2nd. One week later, I found it hard to sit down and was having pain and pressure by my butt crack. I figured my tailbone had been bruised during childbirth, and let it go for one week until the pain was unbearable. I finally went to the hospital on Monday the 16th and was told I have a pilonoidal cyst. They drained it and packed it and I will slowly have the packing removed over the next week. The doctor in the emergency room referred me to a surgeon but she said a lot of people don't have the surgery done because it is so painful. I am 24 years old and as far as I know this is the first flare-up I have had, at least the first one that has required medical attention. I am debating whether or not I should have the surgery, so if anyone has any suggestions, I would love to hear them. You can also contact me by e-mail-malaynie7@hotmail.com. Thanks, Melanie

Date:

August 16, 2004

Story

I am a 19-year-old college student who has had a pilonidal cyst for a few years. Well, my mom found out and suggested that I go to a surgeon about it. She took me to a plastic surgeon, but he referred me to a Colon & Rectal Surgeon. He talked my problem over with me, and confirmed that I had the cyst for a long time. He said that I would need to have an operstion to have it removed. I was pretty nervous, but I got tired of putting tissue back there. I wanted to live a normal life, not being conscious of having a stain on the back of my pants. I had the procedure done on June 15th, and it was not too bad. I did not feel the pain until the third night. I woke up crying, and my my mother and brother had to give me some Oxycotin (the strong pain medicine). It was a painful first month of recovery, but during July, I forgot it was there. I did not start feeling anymore pain until a couple weeks ago. I went to the doctor for one of my follow-ups, and he said that I am recovering pretty well. He packed it today, and now it is throbbing. I am sure that the pain will get back to normal, but for anyone who has just recently had surgery, my doctor said "don't walk on eggshells." He said that I can be active, but not too active. I am leaving to go back too school tomorrow; and I plan on just taking it easy. I am a music major, meaning I sit down quite a bit, but it's better than doing things that can tear some tissue. If you have a pc, don't be afraid to get it worked on. It is embarrassing and painful, but it also not something you want to have on your butt forever. Everything will be fine. If you have any questions, e-mail me at Shawna033@hotmail.com.

Thanks, TaShawna

Date:

August 16, 2004

Story

I first noticed my pilonidal cyst at age 23 while I was in grad school. I woke up one morning with a huge bump at the top of my crack and a whole lot of pressure. Needless to say I didn't go to the doctor and about to days later the thing opened and it drained, and drained, and drained. Figuring that it heal itself I still avoided the doctor for nearly 5 months. Mistake. Went to the doctor and he said I had both a cyst and sinus and they had to be cut out. He sent me to a surgeon who was a real nice guy, but how good? . .well who knows. Anyway, I had surgery and then weekly follow up appointments for nearly 9 months. Every time I went the doctor would break up the healing tissue, saying he did not want it to bridge, however it also wouldn't heal. Well sure enough about 6 months later it came back and I returned to the surgeon and we followed the same procedure, only this time the weekly follow up appointments lasted for over a year until I went on vacation and the wound closed. Everything was great for the next year and a half until low and behold back it came. So I got myself a new surgeon and had a 3rd surgery in late June 2004. Eight weeks later and its healing much better than it had previously. The wound is nearly completely closed and I have a much better feeling that this time we finally got it.

All the best, Ed - NYC

PS - using tape all the time can leave your butt gluey and sore. My sister who is a RN, got me these things called tegederms that I use to cover the gauze instead of tape. They work great and leave your skin in much better condition than tape and are great for preventing leakage of the wound onto your clothes. You can buy then online in various sizes depending on size of your wound.

Date:

August 16, 2004

Story

Dear Suffers,

I am a 19 year old FEMALE who just had Sugery to remove my piolinal cyst. Me too had never know what such a thing was. Come to find out my aunt had the same thing and finally had hers removed. For years I have had a small hard bump at the top of my buttcrack and never knew what it was. One day about 1 month ago I felt like i was getting a zit there. It hurt a little to sit and i thoughht not much about it. Well 2days later , it was huge! Red and spongie to the touch. I was almost crying trying to get in and out of my car and sitting was terrible too. So at 1:30 in the moring the pain was throbbing just laying on my stomach. So i went to the ER. I assumed they would give me anti botics and that would be that. They lanced it, that was the worst night of my life, believe it , it hurts like hell but the next day that terrible pain is gone. It iched alot as it healed. I saw a surgeon immedialty following. He said I had to wait 3 weeks for it to completly heal before surgery. Never let a surgeon take it out until it is completly heled over. The sugery was 45 min. and i was put under, he removed a small cyst and the surrounding tissue/muscle. He says it will never come back (in that place). Do not shave that area thats what caused mine, a blocked hair that started to regrow. I have stiches now and its hard to do much of anything, but hopefully it will be well worth it .

Date:

August 14, 2004

Story

Hello

Most of the stories I have read here and on other websites relate to Pilonidal Cysts in the tailbone area. Mine is in a different area - lucky me, so I thought I would share this with you and I would love to hear from anyone who has the same or similar problem.

My name is Dee and I'm 35 yrs old. I have had my Pilonidal Cyst in the Pubic / Bikini Line area for 6 years now. It's always been the size of a pea and thankfully not gotten any bigger. For the first 2 years it didn't hurt at all and I assumed it was just an annoying spot that wouldn't go away. Then after 2 yrs I started to suffer with a lot of pain due to the cyst swelling caused by the friction and irritation of my underwear and trousers. My daily routine from then on was putting ice on the cyst to numb it and then lancing it every few days to relieve the pressure as well as trying a number of different creams, drawing ointments, antibiotics, etc.

After putting up with it for 4 years I'd had enough and decided to go to a plastic surgeon who removed the cyst with a lazer and my wound was sewn up with stitches. Three weeks later it got infected and the cyst returned so I continued with the lancing routine again for another 2 years.

Over the years due to the cyst internally bursting I have suffered many times with blood poisoning but I don't think it was too serious because the only symptom of the blood poisoning was a very tender swore body all over for one-three days at a time. It's a bit like being bruised so it would hurt if someone touched me even using a feather light stroke without applying any pressure. This was happening a bit too often and I got scared because I recently learned that blood poisoning, i.e. septicaemia is life threatening so I decided to have the cyst removed again.

I have just had the cyst removed 2 days ago by the same surgeon with a knife and had it sewn up again. I have just had my first look down there and changed the bandage and it looks good, no leaking or anything the area where it's stitched up is about 3cm long (double the length of when I had it done 2 years ago). My wound is quite small compared to most but believe me it's given me hell over the years.

The surgeon didn't give me much information about aftercare other than to leave the bandage on for about 3 days and NO baths and to come back in 10 days to have the stitches removed. As you can imagine I have many questions about the aftercare so I just posted the questions on the www.pilonidal.org Forum in hope someone might have the answers.

Apart from the ongoing pain each day the other frustrations are: not being able to wear underwear, not being able to wear short skirts or trousers unless they are big and baggy, not being able to sit down for too long and if I do sit down I have to make sure I sit like a man with my legs wide apart....hence no short skirts for me...hehe. I have also given up activities that I enjoy like bike riding, diving, running, etc. but sometimes I get really frustrated and think what the hell so I'll go for a bike ride or wear my favourite tight jeans and then spend next few days paying for it.

Thank you for allowing me to share my story - feel free to email me if you have any helpful advice: webprint @ onthenet.com.au (remove the spaces before and after the @ symbol)

Good luck to all who share this nightmare!

Date:

August 14, 2004

Story

I am 22 and had an operation on my cyst near 20 months ago. It was extreme because I was bleeding so bad the morning after the surgery that they cauterized the incision (though I could barely feel it, thanks to the anesthetics.). I am still not fully healed and wonder each day when the incision will heal the whole way. Though, my cyst was unusually large and was left unstitched (which is better in my opinion). I'm not sure why the rest of the opening is taking so long to close up...perhaps because it's deeper than the top of the incision (which is healed). For the most part, things are good, but I still have drainage from that tiny opening that remains and sometimes I think the pressure from pooping keeps it from healing and sometimes causes the blood to start flowing like wine...lol. Everyone out there with pdc's I feel where you're coming from; the cysts are a lot of pain and care, but I advise you to follow the advice given here. I have my dad shave out the area of the incision every few weeks (at first it was kind of humiliating, but now it's normal, thank God for dad) just to keep the hair out of there and other than the unhealed portion, I see no signs of recurrence. I also make sure to wash out the incision area when I shower, as some funky stuff can creep down there in a mere day! I pray blessings on you who suffer from this thing and wish the best in your operations and healings. Take care and God bless.

Tim, PA

Date:

August 13, 2004

Story

August 13, 2004

The first time I learned that I had a pilonidal cyst was in 2000 i was 19. I went to the doctor for months having it drained and lanced over and over again in hopes that it would go away. Every time the same thing, numb the area cut it drain it hope for the best. well it didn't go away so we scheduled an appointment with a surgeon and had a consultation. well they decided it was best I get it removed. I had never even heard of this before and i was completely clueless. I had never known anyone to have it and I did not know what i was in for. Unfortunately I did not end up liking my surgeon, he was rough and caused me pain and was very brief with me. he did not explain things very well.

So I went in for surgery after about 4-5 months of lancing and draining. The procedure went well, i had the pain killers put in my IV. I have heard of people getting epidurals, but I had it in my IV. It was a really wierd feeling but not bad. (I would think much easier and less painful than an epidural) The procedure went well and i was in recovery. my mom took care of me and brought me home i slept for what seemed like days i was on painkillers and all foggy feeling. when we had to change the bandage boy were we in for a HUGE surprise. my surgeon did not explain to us very well what after care would be like, and what my backside would look like, it was a huge gaping hole in my back and we were not expecting that. my mom, bless her heart, took care of me every day, packing and bandaging me and talking me through the horrilble pain. It took me months to fully recover I had to wear some sort of bandage for at least 3 months and then sometimes off and on still after that. I did not fully remember exactly how much pain this had caused me until about 2 weeks ago when it came back.

I lasted a good 4 years until 2 weeks ago I was brought to the emergency room again in excrutiating pain. I could not sit, stand, walk, lay down, basically do anything without wincing in extreme pain. They lanced the cyst again and let it drain. It is just very upsetting to have to be going through this ordeal all over again. I thought it was over and done with. They sent me home with packing in it again. I had a visit to my family doctor and they removed the packing and referred me to a different surgeon (thank god!). I will probably have to get this one removed too I don't see why not, it has gotten worse since my visit and now it is infected and draining that gross pus stuff and it actually protruding from my back area because it has gotten so large. It is painful but much less than a week ago when i was in the ER. they gave me vicodens which helped somewhat but not much. I have an appt. to see the surgeon and I know i am going to have to take off work and have my mom and boyfriend help to take care of me. It is hard to deal with being immobile and not being able to do things for yourself, but after having it done once i know it is worth it. I just am not looking forward to the pain and agony of the aftercare and being out of work. I will let you know after the recovery period how this one went for me! I can only hope for the best and that maybe just maybe this time it will be gone for good??!!

This website was sooo helpful to me. I did not do much research last time i had the cyst. It is nice to see that there are actually other people out there with the same problem and that i was not being a huge baby and just thought i was in alot of pain, after reading other stories i now know that I was not just a huge baby these things hurt like hell!!!! For those of you that are dealing with this right now i wish you good health and take care of yourself!

Nataleigh

Date:

August 12, 2004

Story

My name is dan, Im 27, I got my 1st pilonidal Cyst when I was about 20. At the time I was in college full time, delivering pizza (sitting alot) and working in a pizza kitchen. (and I have hair growing pretty much everywhere but my head :) At first, like every other guy, I thought it was just from sitting in the hard chairs at school 5 hours a day and didnt go to the Dr. It never really went away. So finally I went to the general Dr. He told me it was just an area of infected skin and gave me an anitbiotic. I took 2 or 3 pills the rest of the day, went to bed and woke up to the sore bleeding. I drove to my friends house, when I got outta the car the was another clump of blood and puss. I didnt know what was wrong. My guess is the antibiotic broke up the infected area and started to drain. After that it was never as bad but still bled pretty much all the time. I had to put toilet paper over the wound pretty much all the time. So finally I went to a dermatologist who took one look and said it had to be cut out. He reffered me to a plastic surgeon to perform the surgury. Real nice guy. I just had a local anestetic. The worst part was he hit bone on the 2nd round of numbing shots. Surgery took about an hour. he told me he was going to make sure he got all of it. He closed the wound. I walked out of the operating room and even to the car. I took some pain meds which basically helped me sleep. I was slow for a few days but dont rememeber really being laid up for any real period of time. At the time I had no job and was between semesters. So I healed up, got the stitches out, and had no probs for 7 years....Until about 5 weeks ago. I started noticing a ridge halfway down my crack (which I learned was a sinus, thanx to this site) a couple months ago. It started to get sore, then I notice a pea sized lump at the very top of my crack on the right side. In the past 7 years it would occasially hurt a bit but I think it was from my clothes rubbing or sittin too long, it would go away within a day. Well this time it wasnt going a way. I immediatly went to the family Dr. He said it was small and that anitbiotics could keep it down and that I would eventually have to have it out but that there wasnt an urgency. Regardless, I immediately made an appointment to see the surgeon. He reffered me to a colon and rectal surgeon. The 1st C&RS I saw said the way he did the surg was a night in the hosptial for pain Mngment and that I would be laid up for about 10 days total. I sit all day and I play in a band pretty much every weekend. So I just had to find a time to be laid up for 10 days. that was about 3 weeks ago. In order to get a 2nd opinion, I saw another surgeon. (the 1st guy wasnt very personable). the 2nd Dr...after I waited an hour, comes in, asks me the stardard questions, puts me on the table (which makes U stick your butt in the air) and is having me tell him my story, and then begins to (i found out afterwards)stick a probe up the sinus!!!! I was like HEY!! didnt warn me, didnt even tell me what he was doing after I shouted ouch. I have a pretty high pain tolerance. I thought at 1st he was just pressing it w/ his finger. After he told me to get up he showed me the prod he stuck up the sinus. and how far in it went. I was thinkin (well thanx for telling me you were gonna do that buddy!!), felt like a needle. So both colon and rectal surgeons I met were not very personable, but I guess if U looked at asses all day U be an ass too. So he tells me that he does the open wound surgery and that its the only way for it to fully heal. Obviously there still isnt a lot known about these things cause Im gettin conflicting reports. He told me "The problem w/ pilonidal disease is the cure can be worse than the disease." Which by reading some stories I can see that to true. Both surgeons say that it looks like the 1st surgeon didnt do what he was supposed to and that he left the sinus, I dont rememebr if the sinus was there the whole time or not. I dont usually feel or look back there very often. The 2nd Dr said the sinus is the root of all of it. That the bacteria getsin through there. i dont rememeber having a a sinus last time. There is a picture on this site of the very young baby w/ a sinus opening that is exactly where mine is and looks identical. I also have a bubble where the original one was in the usual position to the left of my cleft. That bubble has since filled w/ hard tissue in the past 2 weeks. So I think now I have to go have it lanced and drained before i can have the closed wound surgury. I can't afford to have it left open and be laid up for 3-5 weeks. It really really sucks. After 7 years of no probs...BANG!! back where I was 7 years ago. I cant lay on my back, I cant sit on the couch long. Im am worried about it bursting. It takes 2+ weeks to get an appoinment w/ these guys, and I want this thing out. My advice to anyone dealing w/ this for the 1st time; DONT WAIT, go to your Dr or straight to the surgeon if U can, use a Colon and rectal surgeon and not a plastic surgeon, and get it removed ASAP. The sooner you do, the sooner you can get on your w/ life; when U go to the Dr. ALWAYS ask what he is going to do once your on the table. I am scheduled for surgury sept 21, but I will only go forward w/ it if I can have the closed wound. I may need to have it drained and then reschedule. Feel free to emial me w/ questions. Muzicman76@aol.com Thanx for this site, I thought I was a freak!! :)

Date:

August 11, 2004

Story

I can’t recall exactly when I first noticed a cyst above my cleft… I think my girlfriend noticed it first. As is usual, I ignored it for a long time. Fortunately for me I had no pain, sinuses or drainage. Lord I guess I was lucky. (It still seems hard to name it the same as there were none of the usual symptoms except for the raised bump at the top and to the right of my butt crack.)

Anyway, I finally decided (after a year or two) that I wanted it removed and decided to see a doctor. I figured it was a sebaceous cyst or something simple/benign and could be sliced right off in the doctor’s office. I made an appointment to see a GP/family doctor. He took a look at it, was surprised it didn’t hurt and told me it felt warm. He said he would refer me to “surgery.” I asked if they could do it that day. Not a chance, I had to make an appointment to come back for consultation. Man, I thought that was nuts – come back in a week and still no cutting.

When I finally walked in to the surgeon’s office the next week the nurse used a word I had never heard before… she asked, “You’re here for a polinidal cyst?” I said I had no idea, but cyst sounded right. The surgeon came in and told a joke that I didn’t understand because I did not know what I had been diagnosed with, but he did. He said “The nurses tell me you have a hairy butt.” I almost fell off the examining table. He was a nice guy.

Both doctors poked it and seemed surprised that it didn’t hurt and that I had no pain or discharge. He said he wanted to remove it. I said great, that is what I am here for. I still had no idea what this thing was…

Then I went back to work and started reading and researching on the internet. Boy did I get scared. I had made an appointment for surgery the next week and by the days before I was nervous about the recovery/healing, etc. I called the doc’s office. He told me to relax and that my situation was about as good as you could hope for – it looked very small, contained and he didn’t feel an open/wide incision was needed. He would cut it out and close it. He did say there was a better chance of recurrence in that case, but given my situation and the much faster healing time this was his recommendation. I was ready to go with the more invasive route, but I just needed someone to talk to, as I had not prepared myself for the stuff I found in my research. Yikes! My heart goes out to all that have suffered – and seem to have done so more than I certainly did.

Due to a condition called Malignant Hyperthermia, the doc decided a hospital room was best, not his office. The anesthesiologist was happy to meet someone with my condition and had prepared fairly well. He offered to do an epidural but I declined – asking instead for lidocane and some sort of analgesic/opiate/sedation. The surgeon agreed and showed him my cyst and they agreed that a spinal/epidural was not really called for.

The worst part of the ordeal was getting the IV put in before-hand – I almost passed out. The poor nurse had to listen to me muttering and cursing under my breath as she inserted the damned needle. Another nurse saw my white face and ran over to drop the bed down – man I was clammy and white! I am a big baby.

I was finally wheeled into the OR. They stuck a thermometer in my mouth and ran some oxygen in my nose (both due to the MH condition) and then shaved the butt area. The anest. told me I might feel burning in the arm when he injected something into the IV – I waited for it, but never happened. I felt really light headed/good shortly after than and he asked how I felt. I said something stupid, and I have since thought of a few witty things to say, but the chance was lost. I think I was awake but daydreaming the whole time, but I suspect I slept for a good portion of it. I was conscious of some poking and prodding on my butt, but no pain. I “woke up” at some point and then shortly after was asked how I was doing. They must have stopped the sedative drip/whatever it was just before I woke up.

My butt was bandaged and I was sent to recovery room – there was a great deal of discussion about how long I should be in the recovery room – due to the MH. I just wanted out! I was sent home about 4 and a half hours after the surgery was done. Again, note: I was stitched up – it was a closed wound due to the fortunate chance of a contained cyst with no apparent sinuses, etc.

I bled through the stuff and apparently it dripped down my crack and I soiled my pants and boxers on the way home. Now I know what half of the world has to go through. My female friend called me a wussy and introduced me to “spray and wash.” I was able to take the padding/gauze off after 24 hours, but still left the butterfly tape and sutures in. I showered the next day and felt fine. There was hardly any pain – mostly none, but sometimes a dull ache. I was given vicodin, but didn’t really need it. I took it to sleep. I was worried about pooping, but that was a non event for me. I just make sure to shower every time afterwards.

It has been about 6 days and I went to see the doc yesterday. He said it is healing nicely. I didn’t ask enough questions. I am itching to get back on my bike to ride but he says to wait another week. (I suspect for the stitches) I have two things that look like bruises, then the wound that is taped over. He said I didn’t have to come back and the cyst was well contained and he was happy with how it went.

Man, I am happy to (hopefully) have this done with. I pray that I have no recurrence and I certainly am thankful that I didn’t experience what seems to be the more usual symptoms. Again, I thank you all for your stories and wish you all the best – especially those of you that have suffered with what is about the most embarrassing thing I can think of. I was lucky enough to have a mild case and am quite thankful!

Thanks to April for taking me to the hospital and back and taking care of me for the two days I was out of commission. You’re a trooper!

Take care, tim

Date:

August 10, 2004

Story

Hello everyone, My name is alex and i recently had a cyst form three weeks ago. I'm 18 years old. I was in extreme pain for 3 days. It slowly got worse every day until one sunday morning 3:30AM to be exact, i could not sleep it hurt so bad. i couldn't lay down walk sit it just throbbed in pain right above my cleft(butt crack).i though i had a broken bone but when i arrived at the er they told me what it was and they had to lance it. That was the worst 30 minutes of my life. The numbing medicine they injected didn't even do much when they cut my skin over teh cyst to drain it. Anyhow, i then went to see a specialist they reffered me to and he said that i should wait and see if it will come back before we discuss thing like surgery. So i just packes my wound and let it drain which was very anoying because every day 3 times a day i had to change the gause which smelled horrible. i assumed i would probably never get it again and the doctor on my last visit said he wouldn't have to see me again. one week later it has come back and now i have to see him ;ater this week. from reading this site i'am sure i will have to have surgery and i'm going to go with the excision and open healing since i want the best chance of never getting this god forsaken pain in the ass again. the thing i'm mad at the most is i might have to miss the first semmester of college becuase of the healing process. Anyways i want to just say this is the best site ever, i learned more about this diseas than i have anything else in my life and it made me more confidant and eased my mind of not knowing what was wrong with me.

Date:

August 10, 2004

Story

Hello sick fellas,

I got Pilonidal Cyst recently and I got it off my back four days ago through surgery. I've arrived at the hospital around 10 am and I was sent to the room around 2:30pm. A nurse gave me a blue pill and told me that I was going to be sleepy in order to stay calm during surgery. During surgery, the doctor showed me the thing: a grayish, dusgusting mass with a lot of hairs, and that was really big. My girlfriend is taking care of me and doing a very good job. I can't sleep too well since I can't lay on my back and I can't spread my legs too much. Some stitches broken and the wound is opening even more. I called my doc and he said that its not a problem, but even so, it worries me a little. I don't feel pain and I hope to continue this way until get total recovery.

Well, that's it folks, I'll be back to tell you more. Any information you need, e-mail me at david@lideraviacao.com.br.

Regards,

Dave - Brazil

Date:

August 10, 2004

Story

Hi! I've had a pilonidal cyst since I'm 14 years old (I'm now 33). The first time I had it, it was lanced in the doctor's office (the most intense pain in my whole life -- not only the lidocaine needles, but when they PUSH the pus out!!). Since that time, I've had them every few years, and I've let them burst on their own. However, in the last 2 years, they've been coming more and more frequently -- like every 6 months or so.

I was diagnosed with Type 2 Diabetes last year, so now I have to take any kind of infection seriously. I had the surgery in February of 2004 to remove the cyst. I had it done in the surgeon's office and had a closed incision. He told me that he took a very conservative approach and if it comes back, it would have to be done in a hospital and they would have to go deeper.

Guess what?? 3 weeks ago, it came back! As soon as I felt that tell-tale tenderness in that area, I went on Keflex to get rid of it. This time, the antibiotics did absolutely nothing and it got bigger and bigger. Last week, the pain was getting too intense so I went to the ER (my surgeon was "booked"). The ER doctor lanced it (oh God, the pain!). I went to see my surgeon the next day to have him look at it. He said "they did a good job, but they didn't make the incision big enough for proper drainage". He gave me Lidocaine and pushed more out (I can't take anymore!). He said to come back in three weeks to discuss the surgery (my appt. is on August 10). He said it would be an open incision because there is less chance of it coming back. Also, it would take 2-3 months of recovery.

I can't afford to be out of work that long and New York State disability only pays $170 per week for short-term disability (my rent alone is $1,040 per month!). I figure, if the surgeon can't GUARANTEE that it won't come back after having an open incision, I should get the closed incision and take my chances. Any feedback would be appreciated!! my email is Leighdvm@yahoo.com

Date:

August 09, 2004

Story

Hello All,

i am a student studying in Australia and here is my story. After many years of pain on my backside i decided to get my pilonidal sinus checked out. Well the first time about 4 month ago i had it drained, packed with dressing for a week after. My doctor then told me that there is a risk of getting it back. And guess what he was right. I had peace for about 2 month and then i had that annoying lump back. I went back and my doctor referred me to a surgeon. My surgeon had a look at it and told me it has to be excised under general anastetics. Well i had my operation 10 days ago. After waking up i was quite in pain, but the nurses in recovery gave me strong pain killers, whose worked fantastic. My doctor dropped by and said that it was quite deep and i also had an abscess. However i was kept overnite in the hospital. The days after i felt great, of course because i still had painkillers. About 3 days after my operation i had to see the wound management nurse, who told me what i can do with the packing.

There is a NEW PRODUCT called CAVI CARE, which is a paste (i think i couldn't see when she mixed it)which is filled in your wound and as it gets stiff it feels like a sponge. (not painful) This product i find excellent because i can do the packing myself, all i do everyday is before i have a shower take it out and wash it with tapwater. After my shower, where i cleaned my wound i put it back in. How easy is that, no pain and it feels better than the ordinary dressings.

Has anyone experience with that product?

However i made a terrible mistake, since i am a uni student i thought i can get right back, i was sitting for 8 hours straight, and at night i had to suffer,the worst pain anyone can imagine. Even walking was a real painful experience, after that i didn't sit anymore for long periods and i am fine again.

So please do not sit for a while. Even if you think its possible, sit to a real minimum.

Good luck to everyone.

Date:

August 08, 2004

Story

First of all i'd like to thank the creator of this website. If it wasnt for this website i would still be feeling sorry for myself for having a medical problem that i was embarrased of. I literally thought i was the only person in the world who had this. I was in my early 20's and attending college. My problems started in 2001 when i noticed what i thought was a small pimple on my tailbone(turned out later to be a sinus). I thought it was a pimple and i sqeezed it as hard as i could thinking it was going to burst. To no avail all that came out was blood. So i left it alone thinking it would go away by itself...boy was i wrong. Unlike many other stories that i have read in the forum, many people have had cysts under the skin. In my case weeks after i had tried to sqeeze the sinus, it grew into what looked like a peanut on the outside of the skin near the top of my tailbone. It literally looked like somebody glued a peanut to my bum. i thought it was a growth like a mole or somthing and i didnt pay too much attention to it....well i should of. About two days later it swelled up to about the size of a large grape. Now it looked like i had a large graped glued to my bum. It was very ..very.. and i mean very painful. I went to bed that night and i didint feel the pain anymore. I reached down and looked at my hand..my hand was covered in blood and a white/greyish puss. The pain was gone and it burst so i thought it was over with and it wouldnt bother me again.....wrong. For the next 6 months it would do the same thing over and over again: swell up, be very painful and drain. It was embarrasing! It was embarrasing to always find blood and puss in my boxers and pants. It was always embarrasing to have to worry when i went out in public places if my cyst would rupture and bleed into my pants. I was tired of it. At this time i still didnt know wh