Personal Stories Archive
Archive January, 2010 to March, 2010
Date: March 29, 2010
My pain and suffering began with a fracture to my coccyx in 2003. Months after the fracture and numerous x-rays, the pain went away, but I was unable to sit for long periods of time. My doctor believes that this injury is what led to my pilonidal cyst.
I had my first flair up in January 2006. The golf-ball sized abscess had to be lanced (PAINFUL!!)with local anethesia and was left open to be packed daily. I cannot describe the amount of pain this caused me (even with heavy pain meds and lidocaine). My mom, who is a nurse practioner and was my nurse (and angel), had the duty of changing my packing and listening to me scream for about 2 weeks, until it healed. <br> After this, I felt ok, but not 100%, and worried that it would happen again. I was right. January 2008, I developed another abscess that required lancing. I refused to go thru that torture once again, and decided that I would let it "pop" on it's own. It didn't. It was lanced, again, and left open, again, but did not require packing this time because I made plans to schedule the surgery that summer (I'm a teacher and figured summer would give me enough recovery time). I chickened out and didn't go thru with it.
From then on I began to feel "the pain" at least once a month. Since my PA knew my history, she would prescribe me Bactrim to prevent it from developing into a full blown abscess. After long lectures from my family, tons of research and reading stories posted here, I scheduled my surgery for December 21st, 2009. I was extremley nervous about the pain, but figured it couldn't be any worse than what I had already been thru.
My surgeon decided that a "closed" Excision would be best for me. Surgery went well and quickly, as I don't remember anything due to the general anesthesia. I was released from the outpatient surgery center about 4 hours after I arrived with only 6 stitches. The pain the first day was the worst, but it only got better from there. I rested at home for 2 weeks, limiting my time sitting and walking around.
2 months later, I am able to sit comfortably for longer periods of time and actually enjoy watching a movie at the theater (although I still find myself shifting from time to time...habit, perhaps?)I haven't had anymore flair ups (knock on wood) since my surgery.
I am very greatful for this site and for all those who have posted their own stories, as I credit you for helping me find the courage within myself to schedule and GO THRU WITH this surgery.
Date: March 29, 2010
I first suffered with a Pilonidal Abscess when I was 10 weeks pregnant. It was very painful and inflamed but I was given a course of antibiotics and a few days later it had disappeared. I was extremely thankful and thought that was the last of it.
Five months later, another abscess flared up which became much more painful over a shorter period of time. I went to A&E late one night to be told I needed surgery to remove the abscess. I stayed in over night on an IV drip, under the impression I would be going under general anaesthesia the next day.
The surgeon came round in the morning to tell me the job would be done under local anaesthetic as opposed to general, due to the risk to the baby. I was slightly relieved by this as I did not want to be put to sleep, but I had no idea what was in store.
I was injected with the anaesthetic several times around the abscess, which was painful. Less than 30 seconds later the surgeon began slicing, the pain was HORRIFIC. I was literally screaming and crying until the procedure was over. It was left as an open wound, roughly the size of a golf ball, which was packed with alginate rope daily. The wound had healed completely within six weeks, but a few days later I began feeling that dreaded pain around the tailbone. I hoped it was just the scar tissue pulling, but three days later I was back in hospital.
This was yesterday, and for the second procedure I refused to have it done under local anaesthetic, so they suggested a spinal block. I am 36 weeks pregnant now and because the baby is practically full term, the risk was much lower as they could perform a Caesarean if worst came to worst. I was given a local anaesthetic in the bottom half of my spine, and then given the spinal block, which I didn't feel at all. I had to sit for a few minutes while the block took effect, and eventually my entire lower half was numb. I could feel people touching me, but they used an ice cube to test whether the nerves were functioning, which they weren't. I had three female nurses in the room with me who were talking to me the whole way through, plus the anaesthetist and two surgeons. At one point my blood pressure dropped dangerously low, but I was given a shot into my IV which took it back up again. The procedure was over in around ten minutes, and I felt no pain whatsoever. I was initially told I would have to stay in over night, but was discharged when I was able to stand up and walk about, and when the obstetrician had given me the ok.
So I am on day one of recovery, feeling minimal pain and taking 400mg paracetamol every 5 hours ish. I had a nurse change my packing this morning (alginate rope again) and she said it looked clean and well. My legs are still feeing quite heavily from the combination of the spinal and spending a lot of time laying down, but otherwise all seems quite well. I am praying this is the last of my pilonidal experience, because the surgery and recovery is very time consuming, painful and uncomfortable. Plus, being so close to my due date means I may well be giving birth with this wound still healing. For anyone looking to undergo surgery, STEER CLEAR of a local anaesthetic, as they tend to fail when met with an infection of this type. And I would definitely recommend a spinal block, because you are fully conscious and able to leave hospital around 4 hours after the procedure.
Date: March 28, 2010
This is my story of how long I suffered with Pilonidal sinus for over a 6 year period.
February 2004: The student health center physician at my university diagnosed my symptoms as an abscess and cut it open to drain it and advised that this needed to be packed after daily a sitz bath. This went on for the next one year until meeting a general surgeon who correctly called it a pilonidal cyst and performed surgery in Aug 2005 to remove the “tracts”. For the next one year I visited the surgeon numerous times as the wound would not heal. She cauterized it and packed it as the last resort, but even then it would not heal. She finally gave up and told me to see a “wound care specialist”.
October 2006, December 2006 and February 2007: a general surgeon in India performed 3 pilonidal excisions, and kept removing larger and larger portions of my rear end, finally exposing the tail bone, in an effort to remove all “tracts”. This did not work and the wound appeared to heal but then the oozing would return. June 2008: a plastic surgeon in India very confidently did a Z-plasty. It healed and things looked good, until February 2009 where many different physicians at a San Mateo clinic examined me and finally diagnosed it as a fistula and sent me to a wound care center.
For the next 3 months, cleaning and packing the wound became a part of my and my mother’s daily routine. A local surgeon in Hollister, CA, referred me to Stanford University Medical Center, who after an MRI and many consultations, advised me to meet with Dr. Jeffrey Sternberg, a Colon & Rectal Surgeon who was part of the San Francisco Surgical Medical Grp.
Met with Dr. Sternberg in September 2009, who immediately assessed the situation and consulted with Dr. Bascom, due to the extensive history of prior surgeries. November 3, 2009: he performed a minor “ rubber band” draining operation, which was an “out-patient” procedure lasting less than 2 hours from checking in to driving out.
November 11, 2009: “cleft lift” surgery which took the same amount of time at the Clinic.
After care was simple.
Met with Dr. Sternberg later after 2 months and 4 months, and I appear to be fully healed. I would highly recommend Dr. Sternberg as he is very patient, willing to explain procedures and all the steps involving care so that the problem will not re-occur.
With my experience over the last six years, with various physicians and surgeons, Dr. Sternberg is extremely knowledgeable in diagnosing Pilondial problems and coming up with the right treatment. If you are anybody you know has a similar problem, I would advise you to call Dr. Sternberg’s office without further delay. http://www.sfsurgery.com/ Phone: 415.668.0411 Please have hope, because there is a cure for this problem.
Date: March 23, 2010
Hello, I came across this website, and thought I would share my experience of successful healing with others.
I am a 33-year old-male, who was living in upstate New York state at the time this case happened. I had 3 surgeries for pilonidal cysts within 1 year, starting June of 2006. I took homeopathic medication and then Unani medicine, and saw resolution of the problem after a long and harrowing experience.
I am sorry for the long post, but I feel that I should write about it, so somebody could gain from my experience, and not commit the mistakes I did.
I am an engineer, and my job involves sitting for extended periods. I am also quite hairy. Basically, I meet a lot of criterion which can lead to pilonidal disease.
I first noticed pus coming from above the crack of my butts, in April 2006. My personal physician recommended antibiotics for 2 weeks. That is when I learnt I had a pilonidal cyst. The antibiotics did not have any effect.
1ST SURGERY: In May, my doctor recommended I see a surgeon. I saw the surgeon, Dr M. early June, and that is when my saga really started. I thought in my mind, no big deal. After all, Dr. M was the director of surgery at a big hospital.
Looking back, I realise that I should have done a lot of things differently at this stage. For example,
a) I did not ask him how deep a cut he was planning to make.
b) I did not ask him, and he did not tell me what the success rate of surgery for this problem was?
c) He did not tell me if there were any alternate methods of treatment ( conservative treatment, lancing etc) ?
d) He told me that I only needed 4-5 days of rest after surgery. I did not question him.
The biggest mistake I made was believing that this was true.
After my 1st surgery on 10th June. I was discharged from the hospital, the evening of the surgery itself. I was back at work after FOUR days of rest. Even though I was in pain, I felt I could not miss work. And I thought it would heal anyway. Little did I realise that the coccygeal area is very sensitive, and because of its structure, it can take a long time to heal. Also, walking can cause undue stress on this area, preventing proper healing.
Later I found that the standard procedure is that a patient takes 2 to 3 weeks of complete bed-rest after pilonidal surgery.
So, the week after surgery, I was back to my normal schedule. After a couple of weeks, the doctor took out the stitches. ( It was a closed surgery). However, even by July, the wound had not healed completely.
2ND SURGERY: When I went to meet Dr M for my 3rd follow-up in July, he said that there was 'collection' under the skin, and proceeded to take out a chunk of flush there itself. That was my 2nd surgery.
Since I had an open wound now, it needed regular dressings. My wife would change the packing two times a day, for the following two weeks. However, I was back at work again, 3 days after the procedure.
3RD SURGERY: It was early October 2006, and the weather was great. I wanted to go out and enjoy outdoor activities again. On Oct 1, I went hiking in a State Park. Soon afterwards, the area where I had been operated on previously, swelled up. It was time to visit the surgeon again ! On Oct 13th, my birthdate, I was operated upon for the 3rd time. This was an open surgery ( without stitches), and it was done under general anaesthesia. When I came home I was again left with a big gash you know where. This time the wound was 4 cm deep, 4 cms length & 1 inch wide.
After the surgery, Dr M recommended I use WoundVac. It uses vacuum to suck out any drainage from the wound, and is supposed to promote wound healing. This time I stayed at home for 3 weeks, with full bed-rest during the time. By Nov, the wound had almost healed, but 3 openings remained in the skin.
By Dec 2006, the skin was healthy, but the openings would not heal. I was getting concerned again, and dreaded what would come next. I consulted another surgeon, who said I would need another surgery, probably a ‘Z-Plasty’. However, by now I knew that each further surgery had a diminished chance of success, even though the surgeon did not reveal it to me
HEALING WITH HOMEOPATHY: At this point my father said I should look for other options, and suggested homeopathy. I found out a homeopathic doctor 45 minutes away, and went to see him. His first dose had a dramatic effect on me. One of the openings closed within one day. Observing this gave me a lot of faith.
But progress was slower after that. I later learnt that even with homeopathy, you cannot expect immediate results, but may need treatment for at least a few months. However, homeopathy has consistently shown results in treating abscesses etc. I continued homeopathic treatment for about 5 months. My doctor told me that I would take a long time to heal, because my tissue had become weak, because of the repeated surgeries. In fact, the repeated surgeries had made my situation worse. He also said that homeopathy would help to heal the tissue from within. This approach made a lot of sense to me.
So far, the approach had been to get rid of the diseased tissue by cutting it out. Conventional medicine said nothing could be done to heal the tissue. Therefore an effort was never made to allow the body to heal. But with homeopathy, the body was trying to heal itself. What a novel idea !
With my homeopathic treatment, I became much better. I cannot say I was completely cured. One of the openings opened up occasionally. However, the frequency was much reduced, and I barely had any blood coming out, even when the opening came back.
CONSIDERING HOMEOPATHY AS AN OPTION: If you are thinking of having surgery, you might want to consider giving homeopathy a chance before having surgery. With homeopathy, you have a chance of having the abscesses and/or sinuses healed from within.
However, DO NOT SELF MEDICATE yourself with homeopathy in any case. Do consult a certified homeopathic consultant. It should not be difficult to find a homeopathic physician within an hour from you, wherever you may live. Also, you will need to be patient with homeopathy. You should be able to see improvements with the right medicines soon enough, but complete healing can take a while.
RESOLUTION: My problem was finally cured completely through Unani medicine, after I moved back to India in late 2007. The medicine consisted of an ointment and a medicinal oil which were applied to a cotton gauze, and kept on the affected area overnight. The Unani physician also gave me medicines to take orally, which he said would improve my healing power. The treatment lasted about 4 months, but the effects were apparent immediately. I later learnt that there are treatments for this problem in both Ayurvedic and Unani systems of medicine. Ayurveda and Unani are traditional systems of medicine used in India, for centuries. From my experience, I encourage others to seek out alternate systems of medicine for a cure, because they do exist, and not go in for a surgery immediately.
Date: March 16, 2010
I have thought often of this site since my saga, and I am here to share my story.
As a side note, I am now suffering from different pain that is completely debilitating to my life, and it is so frustrating to find so many horror stories about people's similar experiences.
So - I am hear to share a story of SUCCESS :) Why did I not share it sooner? Because I was busy living my life - and that is what people who successfully recover do (which is why you often don't hear all the good and hopeful stories of success...because people prevail, move on, and get busy with their lives).
To be very, very brief, here is a sequence of events.
1) Age 10 - I notice strange bleeding on my underwear but brush it off (go figure - young age). :)
2) For the next 5 years, strange oozing continues from my rear, but rather than researching it like a sane individual, I proceed to construct "diapers" for myself out of panty liners so that the oozing does not bleed through my clothes. I know - it is disgusting.
3) One day, my mother decides to send me back to my home country for surgery, as I did not have insurance at that point.
4) The horrifyingly rude and arrogant doctor performs a regular incision with LOCAL anasthetic AND NO FOLLOW UP narcotics. I was in miserable agony for about 12 hours and spent the night crying next to a very kind stranger in the hospital bed.
5) I go home. Almost immediately the wound opens up again.
6) For the next year, I see a very kind doctor who proceeds to "burn" my poor ass with silver nitrate EVERY SINGLE WEEK to stimulate healing. For those of you that don't know - the burning actually feels like someone is holding up a lighter on your skin and burning you. It is agony, and yet I keep doing it like a senseless moron.
7) The wound closes up MOSTLY, but not completely. For about a year, I feel pretty normal and forget about the ordeal.
8) THEN - when I am about to take my high school exit exams, I sit on my bed with pressure on my rear for many hours studying, and wouldn't you know it - the CYST IS BACK! In utter agony and dread, I see a swollen bubble at the top of my crack, and the pain is so excruciating that I have to ask the teachers to construct a stand up desk for me to take my exams.
9) The doctor starts the burning again. I am supposed to be moving away to college.
10) Then one day, I find this site, read people's horror stories, and begin crying in sadness and fear.
11) I postpone going to college.
12) I email Dr. John Bascom (I'm sure you know who he is by now). I must say this: he has been the single kindest doctor I have ever met in my life (and I have met many). The man gives me HIS HOME NUMBER, I call him multiple times, and he proceeds to converse with me kindly, openly, and repeatedly.
13) I beg my insurance company to pay to go see him (even though I live on the east coast and he is on the west).
14) I call multiple doctors in my state asking them if they can do this surgery. No one ever has.
15) My doctor calls the insurance company and tells them that I have to go see Dr. Bascom.
16) Finally - they agree!! :)
17) I see Dr. Bascom (I am age 19 by this point, 9 years after this horror began) and he and his son Tom Bascom (who actually performed the surgery) fix me completely.
18) I have ZERO symptoms, zero pain, and my ass feels completely normal.
19) Here I am 4.5 years after the surgery and all is well. :)
NOTE: It is my personal belief that the traditional "excision" is absolutely moronic and practiced by doctors who are too lazy or disinterested to do their research. The REAL cause pf pilonidal cyst is not "bad tissue" that must be cut out. It is that your ass crack is too deep/hairy, bacteria that is not "aired out" can eat through the skin and cause those infamous channels. Dr. Bascom's cleft lift just cuts away SKIN - rather than uselessly removing vast portions of flesh --which creates a more shallow ass crack that can be aired out more easily. AND - very importantly - the suture line is moved to the side and has a chance to heal. When the suture line is in the center of your crack, as in traditional excision surgery, there is too much pressure and pulling apart for it to heal, and it often is ripped open again.
So there you have it. My two cents. I think Dr. Bascom is a kind man who is truly interested in helping people. He will actually mail a DVD of the surgery to any doctors willing to learn it - rather than keeping the info to himself like a selfish prick. I have recently researched a doctor who is very interested in proclaiming that anyone other than his "authorized" minions is a fake - JUST SO HE CAN KEEP BUSINESS FLOWING TO HIMSELF!! Dr. Bascom, on the other hand, is interested in spreading helpful information around. Which is very wise, because there is no shortage of people with pilonidal cysts (I had to wait 3 months to see Dr. Bascom). I'm telling you, I know I sound like a Jesus freak, but this man really left a lasting impression on me.
P.S. Very IMPORTANT!! I have also read about an army doctor who shaved the men with pilonidal cyst and actually resulted in improval of symptoms. I think if there is not hair to be sucked up by the tunnel, then the hair that was already in there is naturally flushed out and the tunnel can heal.
I wish you all recovery and hope - do not give up!!! Shave your bottoms and give Dr. Bascom a call! :)
Date: March 12, 2010
Well seeing as this website and other people's stories helped me so much leading up to and after my surgery, I thought I would tell my Pilonidial abscess adventure!
Well I am 23 years old living in Melbourne, Australia. I started to notice pain when I sat down about 2 weeks ago but didn't think much of it as I had recently started personal training and thought it was just my bum muscles aching after being tortured! After a few more days the pain became bad, excrutiating to sit down and especially to drive a car (the worst position to be sitting as it is right on the tail bone area). I noticed a lump which was hard and very sore to touch.
I am a nurse so I knew something wasn't right. I had heard about Pilonidial sinus' etc but thought it was an ingrown hair which hairy men usually get! So I self-diagnosed myself (as nurses do!) and thought best to see my GP. She took a look and referred me to a Colorectal surgeon. At this stage I was freaking out, crying, scared, did not want to have it drained under local anaesthetic, didn't want surgery, just wanted it to all go away!
I got into see the surgeon about 4 days later which was pretty good. He took a look and yep, lucky me, PILONIDIAL ABSCESS! He said the only way to get rid of it was surgery. Hmmm, and yep, you guessed it, I freaked out again! So, I was booked in for surgery 2 days later. I had a general anaesthetic and then woke up in recovery about an hour and a bit later. Was in a little pain so they gave me Morphine straight away.
I was then comfortable but it felt like I had a massive tampon between my bum cheeks! I had some more pain relief once I was back on the ward and slept ok, although was restless as my legs were aching cos they have had to compensate all my weight for the past 2 weeks cos I couldn't lie flat of sit! I woke up in the morning scared because I knew the dressing had to be changed. I asked for pain relief about 30-45 mins before the dressing change (THIS IS A MUST - being a nurse and all, DEMAND IT!!!).
The dressing change was pain-free. Hardly felt a thing and gee I was happy! Didn't know why I worked myself up so much. I have an open wound - approx 1 inch deep and 2 inch wide. Packed with gauze and local anaesthetic was soothing. Had to stay another night as was waiting for the surgeon to review me. He was happy with the operation and assured me it all went well.
I am now at home, day 2 after surgery. I am feeling pretty good. Only taking Panadol or Digesic every 6ish hours and taking it easy. Definently not as bad as I thought it would be...so far! I'll keep you updated. But be brave, and remember the quicker you go and seek professional advice, the sooner it will get out and heal and you'll be free! Good luck and keep smiling - success stories do happen :0) xx
Date: March 12, 2010
Last week I was doing laundry and noticed some blood in the back of my 15 year old son's boxers, about 4 pair's worth. I asked him what was going on and he told me he had a "cut" in his butt crack for the past 5 months. Fortunately he showed me and I almost fell over (and I am an RN) This boy had been too embarrassed to tell me but he had a thumb-sized pilonidal sinus and two tracks down below.
Took him immediately to the pediatrician who sent him to a colorectal surgeon. The colorectal guy pulled out a bunch of hair from the site, shaved the surrounding area and told my son to take twice-daily baths and come back in two weeks. He felt the sinus would heal on its own. But what about the pits?
Fortunately my son see's a pediatric surgeon for a second opinion next week. My son rows on a crew team and he thinks this is the source of the cyst formation, always hitting that area of his rear when he draws the oars back. i hope his rowing career is not over, but most importantly, I hope he gets the right treatment early to help prevent future surgeries. My main concern right now is that the colorectal guy did nothing about the "pits" whereas Dr. Bascom recommends removing the pits. Any one have experience with the pits being removed or being left intact?
Date: March 11, 2010
I was diagnosed with a Pilonidal cyst and was told I had to undergo surgery. I had it removed in a simple "cut-out" method and the surgeon said it was the deepest he ever saw. He cut in just a little above 4 inches deep and 2 inches wide! Over the coarse of my healing process it would leak and bleed on the tiny hole that was left to drain. The doctor said it would take a while to heal and I must take baths everyday to prevent infection.
Well, it has been over a year and a half since the surgery. It has not healed. I have visited the doctor numerous times with concerns and he too was confused. I could not believe it hadn't healed. I went to see a specialist on pilonidal cysts and he said the previous surgery was wrong. He said I did not need to take the baths, wow over 500 days of a bath a day for nothing, and he would have to do a Z-plasty surgery which would get rid of it. I am not waiting my 2nd surgery and was told I might have to have a 3rd. Do not have have the surgery without seeing a specialist!
Has anyone had the Z-plasty surgery yet?
Date: March 11, 2010
My surgeon told me straight away that even with an operation to clean this condition up it was highly likely to return, which it has for three consecutive operations.
The first operation I was told that it would be left open to drain. It wasn't, I awoke with 14 large stitches, which after a week were pulling very tightly and hurt. I was never given any anti-biotics or pain killers after leaving hospital and just had to get on with it.
After a 3 month period I noticed that the wound had mostly healed but I had an appalling amount of scar tissue. Where each hole had been made for the thread I now had a lump. It had made it uncomfortable to sit on soft surfaces like sofas and impossible to sit on anything synthetic like a plastic chair.
Some 5 years later it returned quite severely. I was working away from home at the time on a three month contract. The Hospital I was eventually admitted to was due for closure, it was built in the reign of Queen Victoria. Although serviceable it was very badly worn out and intimidating as all gothic monstrosities are.
Nil by mouth for 24 hours. I had the second op through the old scar tissue at 11am. I was back on the ward and came round late afternoon. By 6 pm I was wide awake and feeling okay except for a very tight feeling in the cleft area. I was given a cup of tea. This is significant because it was the only fluid I had in 46 hours.
I had been nil by mouth until this point in time and was given a sandwich. This later had the emergency surgeon at a different hospital swearing quite loudly.
After a cup of tea and a sandwich I noticed my bed was wet at about 6.30pm. It was bleeding. Apparently a small vein had been cut and left open. Given the region the sinus is to be found it is quite difficult to keep pressure applied.
At this point my hospital stay for a relatively minor operation became a nightmare. The hospital was unable to schedule me for another op and had to call an ambulance to take me to another hospital in the town. This ambulance did not arrive for 6 hours. It was a friday evening and everyone was quite stretched I suppose.
By the time the ambulance arrived I was quite groggy from loss of blood. Wrapped in the sheets and blankets from the bed they were able to roll me on to a trolly bed. I am lying on my stomach and for some reason my holdall with my things were placed directly on my calves.
It was considered important enough for the lights and the sirens, so it was a quick journey to the new hospital. I remember being wheeled onto the ward. The time would have been 1am. When the holdall and blankets were removed one of the paramedics said “I didn't realise it was that bad!”.
The blood on a white sheet can spread a lot and it looked worse than it actually was because I had been laying in it for 6 hours.
Next I know is that someone is applying strong pressure to my adams apple. Obviously to stop me vomiting after being administered another anaesthetic.
At 3 or 4am I came round and felt very week and disoriented. By this time, including my pre op period of nil by mouth I had only had a single cup of tea in 35 hours.
I rang the bell for attention, possibly too many times, I was able to tell the nurse that I need a drink. What I cannot comprehend was why she put a jug and a cup on a table at the end of the bed. I was unable to reach it. I then passed out.
At 8am I finally got a second cup of tea, 43 hours after first being admitted. At midday, a nurse came to remove and replace the bandage package wedged in the cleft. Ouch! The nurse did not return until later in the afternoon to fit me with a catheter on the back of my hand.
I was supposed to be on a saline drip but no one brought it. It was the following morning that I was given 2 bags consecutively. I think by this time I was semi delirious. The next day was the first time I was visited by a doctor. I was unable to voice any concerns at the time, other than wanting to be discharged as soon as possible.
These events contributed to the end of my employment, but I would have been out of work anyway because I had to convalesce at home for 3 months.
I was visited by a district nurse for 4 weeks. At this time he told me that the health authority I had been treated under would no longer fund my treatment and I would have to seek help locally. I was told that if I needed any antibiotics or painkillers to visit my GP. They also were not prepared to continue supplying me with the chemical bandage(* see note) that had been used to heal the wound. The problem with this was that my own health authority did not at the time use this product.
*note. Chemical bandage. I don't remember what it is called but you mix 2 ingredients together. As they begin to foam you pour it into the wound. The chemical reaction creates heat which is extremely uncomfortable.
The bad news is that it is now back. I was diagnosed with pilonidal sinus at 22 years old and I am now 46. I have had the discomfort from the condition and from the scarring and little flaps of skin for a long time.
I know that if I go back to have it treated again the experience is not likely to be as nightmarish as it was a second time but I am loath to put myself through it all again. When it flares up I treat it with metronidasol antibiotics and hope for the best.
Date: February 28, 2010
On January 28 2010 I had my pilonidal cyst surgery, I went to the ER and they got me in a gown and told me to lay on the bed.
The anesthesiologist gave me anxiety medicine while I was waiting for the surgery (this was my first surgery.)I was rolled into the OR and was given an epidural followed by something that knocked me out. I awoke on my back and was being moved to the room to be monitored, my waist down was numb and all I could do was move my feet.
A couple hours later the epidural wore off and I had to use the bathroom which they wanted me to do anyways, so they followed behind me until I got in (make sure I didn't fall.) I stayed in the Hospital for a day and a half and was allowed to leave, they gave me percocets while I was there (which I didn't need.)
For me there was no pain it felt more like an abrasion, when I got home, everyday I drank a protein shake (HDT Pro Blend 55 55G) with L-Glutamine (6,000mg.)Everyday a nurse came to my house and packed my wound with wet guaze. The hospital gave me a two week supply of vicodin, I took two a half hour before the nurse came and changed my guaze, Vicodin did not do anything for me.
After the first week the top part of the wound was sore and hurt when the guaze was changed(just the top part of the wound and it was like a stinging sensation, think of purell on a cut. And it was only like that for the dressing change) Every week I went to the hospital so the doctor could asses the wound, apparently it was healing very well because other doctors would come in to take a look at it.
After two weeks the doctor who did the surgery was amazed with the progress and called in another doctor to check it out, my doctor asked the other doctor if they could put a wound vac on it, the doctor said sure, so the wound vac was ordered and sent to my house. My visiting nurse applied the wound vac and came every three days to change it. The wound vac has it's pros and cons, (Pros: promotes faster healing, Cons: noisy at times, gets in the way sometimes, and hard to get a seal,people look and ask questions. But the pros definately outways the cons.)
It has now been a month, I have had two weeks of wet guaze then two weeks of the Wound vac. My original incision was 3 inches long, 1.5 to 2 inches deep (you could fit a duck egg in the spot were the wound was). My wound at the present state is 2 inches long, and about less then half an inch deep. Maybe in a week or two I will be fully healed.
(I AM NOT A DOCTOR AND THIS IS NOT AN ADVERT. THIS IS MY OWN KNOWLEDGE, CONSULT A DOCTOR BEFORE YOU/IF YOU TAKE THESE TWO SUPPLEMENTS.) I mentioned the protein and L-glutamine because they do help the body heal. L-glutamine is an amino acid found in the body and helps with protein synthesis. Protein is natural in the food you eat, but with a surgery of this caliber you body will work in overtime to heal that part of your body. To me taking those supplements aids the body in repair. I wish the best of luck to you in your healing of this surgery.
Date: February 27, 2010
This stupid thing that was removed from my person pretty much ruined what I had planned for my life. How you may ask? I spent 4 weeks at Lackland Air Force Base before they made me come home due to my 'disquaifying condition'. The best the doctors could figure was that the sit ups were aggitating it. I ignored the pain and draiage for days because I was scared to be put out of training (i figured tey would put me out a week or two for whatever was wrong with me to heal, and I didnt want that because I woudnt be with my flight anymore). I ended up in the hospital with a fever, having to have surgery, and then being told I was no longer allowed to serve in the Air Force. I was halfway thru basic training. It has been almost a month (my flight graduates in six days) and it still isnt completely healed. Thats my story.
Date: February 20, 2010
I was 17, about to be a freshman in college when my ordeal began. I was working for a veterinary clinic, was active in my church, and was about to leave for a mission trip to Alaska in about 4 days to serve deaf people and a church in a small town. I was at work and the pain I had been feeling over the course of the hours was excruciating, I even started crying during my shift. That night I started oozing blood and pus, and all the while I thought maybe I had cracked my tailbone. I had it lanced that night at the ER, and the local anesthetic they injected was ineffective. My mom told me that the liquid shot across the room and hit the wall. The doctor let me leave that night with some hydrocodone. About 2 weeks later after I arrived back home from the trip, I was told I would have to have surgery ASAP to get rid of this. After the surgery, my doc told me I was the worst pilonidal case he had ever seen- incision 6 in long, 3 in deep to my sacral bone.I cannot describe the pain this caused me and my mother and the rest of the family. The next four months were a mess. They originally tried to close the wound, but that was ineffective as well. 3 days after surgery I was in the clinic getting the stitches removed. I then proceeded to pack my wound every day for the next 3 months, I could fit 2 sheets of standard gauze into the back of me. Slowly I started to close, going through my daily ritual of pulling out the gauze in the shower, just to get re-packed after I was out. AGAIN, the pain was immense. I am now fully immune to Hydrocodone from all that they gave me.
When I first learned what it was, I was so embarrassed. It didnt take me long to find out how common it is, amongst men and women, and how bad the pain is for everyone who goes through it. The experience is humbling, and it made me feel so grateful for my mother and everyone who helped me.
It has been 6 months since surgery, and I have had numerous setbacks, and I am having a flare up right now, but I still continued through my first year at college with it,(getting a 2.9 GPA in the process as a psychology major) and now I know that I can do amazing things no matter what. Its funny, my mom has a friend who told me that she had a pilonidal as well, and hers hurt worse than child birth. I remind my mom that she can't complain about the pain of childbirth anymore to me. God bless you all for creating this website. Thanks.
Date: February 08, 2010
Hello, I didn't realize I had a pilonidal abscess until it was too late. I went to the emergency room on 12/24/09 where it was confirmed I had a pilonidal abscess that needed to be lanced. I made it to my room around 2 pm and the lancing took place at 8 pm and I stayed overnight. I left on Christmas day around 1 pm. The 'general surgeon' who lanced it told me to set a follow up appointment in one week. I followed his instructions and it was a super headache getting a hold of his appointment setter and my appointment ended up being exactly one month after the lancing. The doctor said it was up to me whether I wanted to get the surgery to remove the sack or just wait for another flare up. After taking two weeks to decide my next step the abscess has returned. I set an appointment to see a colon/rectal surgeon, but her first opening is not until March 3, 2010. I have pain as I type my account, but I don't want to go to the ER because I've already racked up $1,000.00 in medical bills so far and that's with insurance (includes emergency room co-pay, general doctor's fee and surgeon's fee). I pray the pain subsides until I can see the specialist.
I forgot to add the 'general surgeon's' suggested procedure to remove the pit/sack. He would start from the top of my cleft, then make an oval shaped incision, remove the sack and surrounding tissue and stitch me up. This did not sound appealling and I don't want want his suggested procedure. If anyone can email me reputable surgeons in the city of Chicago at hotcofy at yahoo dot com, it would be greatly appreciated. Thanks!
Date: February 08, 2010
I first got a flare up when I was fourteen, and like everybody else I thought that it was just a bruised tailbone due to sports, but after the harsh pain I knew that I was wrong. I went to my local E.R. and got it drained on just local pain medications, and after that I thought it was done. Two years later it came back and I realized it was time for surgery. I went in and was knocked out. Afterwards I was a little sore but just stayed in bed for about a week and rested. I finally thought I was done with this very unfortunate thing, Akthough another two uears passed and back came a flare up, so I went back to the E.R this time with more knowlage, and got it lanced. Sadley only three weeks later it has flaired up once again, which means I must go back in for another surgery...This is not the most fun thing to live with, but I keep telling myself it could be much worse.
Date: February 05, 2010
Now that I am healed, I like to share my ‘pilonidal’ story. I’ll try to keep it short. ;-)
I’m a 38 year old woman from the Netherlands. I’ve had my pilonidal since I was 20, I just didn’t know what it was called until two years ago.
When I was 20 years old, I had my first serious infection. There was pain, swelling, redness and fever. I went to my family doctor and he gave me antibiotics, but also told me I would need surgery to get rid of it forever. The antibiotics did their job, and when I was finally called in for surgery (long waiting lists back then) I canceled the appointment, since I had no pain or complaints any more.
For the next 16(!) years, my pilonidal cyst went ‘asleep’. Sometimes my tailbone area would be sore for a few days, especially after long car drives. But it would always clear up and I thought it was gonna be like this for the rest of my life: just a weak spot in my body, but something my immune system could keep under control.
Turned out it didn’t; one week after I gave birth to my daughter I was in terrible pain again. I thought I could sit it out, but when I could't walk any more I went to see a doctor. This was the first time I heard the word pilonidal cyst. I had the choice between lancing and antibiotics. Since I had a little baby that I was breastfeeding, I did not want surgery so I choose the medicines. Thankfully, they did their job again. I hoped I would be fine again for the next 16 years. But 1,5 years later I had another infection that needed to be lanced at the hospital (I waited too long for antibiotics!) and I realized surgery was inevatible.
I was offered the open excision, but I did not want an open wound. I think the open excision is barbaric and I besides I’m too much a coward. ;-) After discovering this site I started looking for a surgeon who knew about other/newer techniques like the cleft lift or Karydakis flap. Finally I was offered some kind of flap surgery in a hospital in another city.
But when I woke up after surgery, I found out they had just done the closed incision! . My pilo was considered too ‘small’ for the far more extensive flap surgery. I was not amused, knowing that the closed incision has an increased infection risk. Some stories on the discussion board made me think it was doomed to fail.
The incision was about 2 inches long and 1 inch deep. They removed two tracks and the infected tissue, I do not exactly know how much. When the stitches came out two weeks later, the wound was not completely closed and the surgeon said it was gonna be a close call. Another panic moment.
I started to put Manuka Honey on it twice a day. This is supposed to speed up the healing process. Exactly one week later my boyfriend declared it was closed! I almost couldn’t believe him, but the other day I went to my family doctor and she confirmed that it looked fine. But another week later, it opened up again at the bottom of the incision. It turned out to have closed only superficial and there was a cavity underneath. It was not large, but it took about six weeks to heal from the inside out. Now (about ten weeks post op) it is finally closed. Once I could see the bottom, I started with the Manuka honey again and I strongly believe this speeded things up.
In the end, I am happy with my closed surgery. I hardly had any pain, I could sit on a straight chair from day one (my surgeon encouraged me to do so, to prevent the fluid from building up inside the wound). Once the stitches were out, I was back on my bike and in my jeans. The scar is hardly visible. I think the closed surgery can be fine for people like me, with only occasional flare ups and not many sinus tracks.
There's something I would like to say. People say that the longer you wait, the bigger it gets. Well, I waited 18 years and it was still small! Several surgeons also told me that tunneling is very rare, it does only occur in about 10% of all cases.
I’m glad I did not choose to have surgery in my twenties, because I think the recurrance risk would have been much higher. I know there's still a risk of it coming back, but now that I’m almost 40 I have the statistics on my side.
Personally I’m convinced it’s a hormone related problem, although there’s no scientific evidence. The female surgeon that did my lancing, told me a lot of women with this problem have the same idea.
If you are scared of surgery, like I was, just keep in mind that it’s a routine procedure which is performed daily in hospitals all over the world. Most people heal without complications and don’t even bother to write about it on the internet. It's mostly the worst case stories you can find here. Don’t be put down by them!
Date: February 02, 2010
I've never blogged before, but I wanted to add my story here because reading these posts made me terrified to get the surgery done. I thought it would make the problem worse, and I would be laid up for weeks. This was not the case at all.
I had my first flare-up when I was studding abroad in Italy in 2002 (7 years ago). I was so embarrassed, that if I hadn't had pink eye at the same time, I would not have gone to see the English doctor. Since he treated mostly tourists with minor problems, he did not have the facilities to lance the cyst there, and referred me to an Italian hospital. However, before my appointment, the cyst burst on it's own--I stood the the bathtub while the puss pooled around my feet.
While thoroughly grossed out, I thought this was the end. I was wrong. I experienced minor flare ups about twice a year for the next 7 years, but these were never bad enough to force me to miss work or drive me to the doctor.
However, just before New Years, it came back with vengeance. Unfortunately, because of the holiday weekend, all the doctor's offices were closed, and there was about a 6 hour wait at the ER. The pain during this time was unbearable. I couldn't move, sit, or even lie on my stomach.
Finally, I got in to see a general surgeon, and scheduled surgery right away. I read through the postings on this website and grew more and more frightened that it would be months before I was well again. I almost canceled the surgery.
However, it was much easier than any story on this site. I went in, had the surgery in about 1 hour, and was able to go home about 3 hours later. I was on pain killers for 2 days, but once the stitches dissolved, I felt almost no pain. I had the surgery on Thursday, was off painkillers by Saturday, and was back to work on Tuesday. While I appreciate all the people who have shared their story on this site, I wanted to share mine, too, because I think my experience is much more typical. The nurses at the hospital said they usually see 3-6 of these a week, and most people recover and are able to go back to work, school, etc, within 1 week. There is a huge range of experience with this problem, but most people recover quickly.
I am very glad I got the surgery, as the discomfort from the surgery is less than a minor flare up from the boil.
Date: February 02, 2010
Hi, I have been suffering from this PITA for about 3 years now. I have had surgery twice and drained 3 times. Surgery may work for some but not all. I have been reading stories of people that have had an unseen amount of surgeries and still there is no end to this horrible disease.
I on the other hand have been told many of things...get it drained it won't come back...have it surgically removed it wont come back...open healing...closed healing...and guess what it always came back. Well I'm fed up! And I know some of you are too...I want my old life back! The one where I could sit without worrying about the pain or drainage. I don't know about any of you but even after the surgeries and healing I was very uncomfortable sitting, laying on my back, going on vacation (plan rides) you know all the fun stuff. I felt like my life was revolving around this thing...my last few were back to back! When my menstrual cycle came around it would hurt and pinch a REAL PITA!
Well I have found something that really worked for me...no pinching...no stinging... sit as I please...go where I please...and the best thing...I don't think about it anymore. Mind you you still need to be cautious, don't do anything stupid. I have found Homeopathy...I know what your thinking oh God is she kidding? How could it be that, that would work. I thought the same thing...but hey what do you have to loose...maybe a Pilonidal Cyst...but that's about it...if it doesn't work, whatever go back to doing whatever it was that you were doing...but I'd rather be rubbing ointments then having some stranger nurse pulling gauze outta my butt any day. I strongly recommend that you see a Homeopathic doctor in your area. I am not a doctor therefor I will not be recommending anything that I am using as everyone is different. But try it...seriously...think about it...what could you possibly have to loose? I have been PC free for the past 3 months and have not had ANY PAIN whatsoever!!!
Now its up to you! Thanks, Someone that wishes I heard about this sooner!!!
Date: February 01, 2010
I had my first experience with a pilonidal cyst when I was 17. I had always thought that I had a bruised tailbone from injuries related to cheerleading and basketball. Then one night a small bump appeared and I became super sick with fever. I went to the doctor and had it drained. It was not a pleasant experience to say the least. He told me that there would be a chance that it would come back, but not being educated on what it really was I wasn't worried. I am now 27. In June of 2009 it came back. I again had it drained and visited a surgeon who encouraged me to have it surgically removed. I sat on it (literally) mostly due to financial reasons. Seven months later, it resurfaced this past weekend with a vengence. I was in mortal pain...couldn't walk, lay dow, get comfortable and pretty much could't move. My doctor scheduled a surgery and I had it drained again, but this time I was knocked out....a much better decision. I will now wait to heal and schedule a surgery to have it removed. I now know its nessacery. Who is to say when the next outburst will be and I most definately do not want to be going through this again and again. I encourage all others to do the same if at all possible. These things do not play around!!!!
Date: February 01, 2010
Briana If you haven't found a surgeon in Alberta, my son has had surgery with Dr. Robin Eccles at the Alberta Children's Hospital. So far so good. She seems very well informed on the disease.
Date: January 31, 2010
I had surgery 4 years ago after 6 years of hoping things would just get better. Except for a scar, its like I never had a problem. I can only hope everyone else has as good an experience. Best of luck.
Date: January 29, 2010
My teenage son had the open wound surgery at the end of July 2009. He had a very difficult time getting the wound to close completely. He ended up going to a wound care center in December since the surgeon seemed to be running out of ideas. The product that seemed to keep the wound from opening back up is Aquacel AG with Hydrofiber from ConvaTec. The local Medicine Shoppe pharmacy is able to get it. After taking a shower make sure the area is very dry and cut a strip of the Aquacel AG and place it over the healing area. You can cover with a Mepilex Border which sticks like a post-it so it does not hurt when moved. Shave the area every week or so. So far the wound looks completely healed for a few weeks now.
Date: January 28, 2010
I am a 41 year old male who has had a long history of minor issues with a pilonidal cyst until one day it became a life threatening episode. After 10+ years flare-ups that drained on their own and others that were treated with antibiotics, the same pilonidal flared up and refused to drain. The pain exceeded that of all the others, and after the typical denial and delay, I went my internist who referred me to a surgeon. Because of the active infection, drainage was the appropriate treatment. I had procrastinated to the point where this thing was angry. The drainage was easy and was done with a local anesthetic. This is where things got out of control. The infection entered my bloodstream and I went into septic shock. This is a potentially fatal situation and I cannot emphasize enough that I am alive because the drainage was done in the outpatient surgery suites of my local hospital (in suburban Chicago). I was rushed to the ER, pumped full of antibiotics and, once stabilized, spent three days in the ICU.
The moral of my story is please do yourself a favor and consult your physician if you suffer from pilonidal abscesses. I am fit, healthy and do all the right things - except get to the doc in a timely manner. Sepsis is very, very rare. But, by letting the infection develop over days and weeks, I upped the odds of something bad happening.
I always kind of thought of a flare up like a zit, but they are not. They are an abscess, an infection. A medical condition and nothing to be embarrassed about at all. So, go talk to your doc.
My surgeon performed the open procedure about 8 weeks later and it was not fun, but it was not terrible. Most importantly, it was totally manageable. The first few days of dressing changes are kind of unpleasant and uncomfortable, but they pass quickly. Plan to take two weeks off with the open procedure and another couple of avoiding/minimizing car seats, etc.
One key to recovery is daily showers and dressing changes. My healing was delayed by nursing care that was reluctant to change the dressing every day because it was not necessary. Necessary does not equal beneficial - so ask your doctor to get you into a routine of daily showers and dressing changes. I read about this on this site and elsewhere and my would made immediate improvement in response to this simple thing. And, standing in a shower will be nice treat and change from laying on your side so much!!
Good luck. And, again, please do not delay in speaking with a competent doctor about your pilonidal. Like everything else, delaying only makes things worse...
Date: January 28, 2010
I am a 30 year old male from Nebraska. My hope is that my success will bring hope and encouragement to those who feel helpless and fearful.
I experienced symptoms for nearly three years and visited my family physician twice, who did not properly diagnose my symptoms. I was very aggrevated and needless to say, I will never visit this physician again for medical care. I finally self-diagnosed my symptoms as a pilonidal and received a referral from a close friend who recommended a local general surgeon.
A visit to the general surgeon confirmed my self-diagnosis was correct. We discussed alternative solutions and made the decision to keep the incision open during the healing process. Surgery was performed within a month from my initial visit.
Surgery went great and I spent two weeks away from work to expedite recovery. My lovely and brave wife assisted with post-op care, which did not include "packing". Bi-weekly post-op visits have been underway for the last five months to ensure proper healing. I expect to be fully healed by March, 2010.
In summary... take action! The longer you wait, the more likely you will not do anything. Making the decision to take care of yourself is the hardest part of the whole ordeal. Make a decision to get help. It will be easier to hesitantly and fearfully take action now versus being forced to action because of health problems and/or medical complications due to negligence.
Do not be fearful or scared. There are professionals you can turn to for help. Just take action and get treatment... NOW! God Bless You!
Date: January 27, 2010
I am a 31 year old female. At the age of 15 I lost a large amount of weight and found that I had a large and painful lump at the end of my tailbone. At that time I had the lump drained, was told it was a pilonidal cyst and a birth defect. I really did not have too many problems with the cyst for several years. I always had the dimple at the top of my crack, and I had a few "flare-ups"... but nothing major.
A few years ago I again lost some weight after having 3 children. I now have flare ups every single month and they do seem to coincide with my menstrual cycle. Sometimes my cyst discharges or bleeds, just lately I've noticed that it has tunnelled and there is another small lump at the end of the tunnel, down and to the left. It's very painful sometimes and makes some exercising (such as sit-ups etc) almost unbearable, though with 3 small children and terrible insurance I suppose I'll wait it out. I do hope to have it surgically removed at some point. I have also been very embarrassed of this "jeep disease" (which is what I found it was sometimes called when I started researching what exactly I had) that is said to usually occur in men with hairy behinds.
Date: January 26, 2010
Just a quick follow up: (See entry titled "Closed Method" from January 10, 2010. For those considering surgery and specifically, the closed method....Read this. It may help ease your mind.
I had the excision with it sutured up. Which meant recovery was fine.
1. Let me be clear...I had no pain at all in the recovery process. Coming off the drugs and being knocked out was worse (and that wasn't bad at all since i got the ear patch, cholomine, to help with nausea after waking up). Only thing that semi-hurt was bending over and going up stairs. Stairs were only a problem for the first few days. Now, 2 weeks later, I'm still overly cautious so as to not split the area open or hurt it, but the only limitation is bending over and sitting. It gets sore and "tired" after sitting for a little bit. But, that's expected until its fully healed and I'm 100%. I really don't sit much at all as of now. Just enough to stretch it. I stand or lay most of the time but am easing back into normal life.
They gave me Oxy to take, but I never even opened the bottle. I took tylenol the first couple of days as a precaution but, I really didn't need it. And it wasn't anything minor by any means. Since I waited so long for the surgery, they literally had to "rotor-till" me. (Their words). Meaning the surgery took longer because they had to take out so much stuff to get it all, plus I was starting to show tunneling. So they did a job on me. But, no pain afterward. Probably because there were no nerves whatsoever in that area. Still numb on the incision line.
2. They did not go outside the midline (crack). The incision was made right down the center. I would say its between 3and 4 inches long. And goes down an inch or so into my crack, so I can't see it. So it is not off to the side. This was not a problem as far as irritation or pain. The sutures held up. They did layers of sutures. So they sutured up inside on the inner layers of skin with dis-solvable stitches. Then the outer skin was sutured up over those, and I had them removed yesterday. This helps it to heal from the inside out. Which again helps keep it from coming back. Other doctors may use steri-strips, which I guess is like tape, instead of stitches.
3. Going to the bathroom. This was my main concern to be honest. I literally panicked about how I would go to the bathroom after surgery. Don't worry. Because you don't eat the day/night before, you really won't have to go the day after surgery. I went # 2 Tuesday morning, had surgery on Tuesday late afternoon, and then didn't go to the bathroom until Friday morning. I was worried but, sitting really didn't hurt. I supported myself to be safe and didnt sit down and relax and read a magazine by any means...but it wasn't bad at all. Just did the deed then cleaned up. There was some blood which had me worried. I called and asked the doctor, they said i may have popped a stitch but just keep an eye on it. Every morning afterwards I went to the bathroom and the blood got less and less. Really by Saturday, (the second trip to the bathroom) there wasn't much at all. Use wipes to help if you want, I did. Clean well and ALWAYS take a shower after to make sure the area stays clean.
MY ADVICE FOR THOSE WHO WANT IT IS: (obviously I'm not a doctor so take this as simple advice and not facts).
1. Don't get the surgery if the area is swelled and draining. Drain it and wait til its gone. Wait until its normal and not puss filled. This makes it easier for the surgeon to do their job and makes the healing process easier. It cuts down on the chances of it getting infected when they close it up. Cause if it gets infected then your screwed and going to have it opened up to heal.
2. Not to be mean but...If you want closed surgery, it may be best if your not overweight and don't have a big backside...Especially if the surgeon stays on the midline...The less friction in the area and the less rubbing of the cheeks, the better. Excess skin, flab, and big butt cheeks means less open area and less air for the wound to breath and heal. One of the main reasons my doctor think mine won't come back is because it didn't get infected and because I'm healthy and my butt crack isn't pressed together.
3. Get as healthy as you possibly can if you want closed surgery. I am a healthy guy, not overweight, etc. This helps. Also, eat even healthier when healing. Have to boost your immune system to heal faster and prevent infection. PREVENTING INFECTION SHOULD BE YOUR TOP PRIORITY. All I ate was fruits, eggs, yogurts, pasta. Eventually I started squeezing "normal," more junkie foods back in.
4. Ask your doctor if the procedure involved reshaping your cleft area. I had my "pit" at the bottom of the cleft, inside the crack. The way it was, made it easy for stuff to gather in that area. The surgery I got involved reshaping that area a little bit to avoid this problem. Now my butt initially felt like it was stitched together because what use to be the first inch of my crack is now sewn together....but, it feels normal now. So it wasn't a "cleft lift" but, he changes the area enough when sewing things up.
Now my doctor seems to think I'll be fine and the cyst won't come back after living with it for 8+ years. (Age 18-26)...I'm trusting him, not so much believing him... But he thinks my size, health, etc will all help me. I don't know what role weight, body mass, body fat plays in re-occurrence, but it would be a good study to take on to see how "big" people are who have it come back. So hopefully my slim/athletic body style will be a benefit. And hopefully this helps some of those who have this annoying condition who are trying to decide what to do....And hopefully I'm not jinxing myself by saying my doctor thinks I'll be fine the rest of the way. -Rich
Date: January 25, 2010
Hi, I am a 29yo female from England and in 1999 when i was 19, i fell down some concrete steps and caught the base of my spine on the corner of one of the steps, the pain that i suffered after was unbareable and i thought i had broken my tail bone. I was told that i had an abcess and it could be lanced or i could take antibiotics. As i was at college i decided on antibiotics. Over the next couple of years it would flare up and i would be given antibiotics again and again. I got fed up in the end and in 2003 went for my first surgery, it was an open wound and my husband had to learn how to pack it and clean it properly. Afterwards it was fine for a couple of years then it started to flare up again and once again i was given antibiotics over and over again, (infact i have been on antibiotics since june). I am currently in the process now of being referred for a second surgery and am not looking forward to it. But I am glad to have found this website and also glad that its not just me that gets monthly flareups.
Date: January 23, 2010
I have no shame taking about my Cyst surgery at work and have found that 2 other people in my 30 person company have the same thing I have. On was diagnosed with it in the Army and never had an issue with it since then and he probably won't since he's 65. The other guy had a 4 week episode of limping around at work that they treated with just antibiotics. I told him to go get it lanced next time because it's like instantaneous relief from all the pressure and pain. It's amazing that if your not embarrassed to talk about it you learn that a huge population has this. I think the statistics are much higher than the often reported 0.7% but because of misdiagnoses or less invasive treatments they go unreported.
Date: January 23, 2010
I had my Cyst drained for the first time in 2001 because I couldn't sit or put on shoes without excruciating pain. while in college. They told me at the time that I had the option of getting it removed but with the 8 week recovery it just wasn't an option for a busy college kid. I actually had to go to the dean to get him to yell at the professor to let me retake a midterm that I missed because of the lancing procedure. He swore I was trying to pull a fast one and cheating or something. It pissed me off so bad that I studied extra hard and actually ended up with the highest grade in the class and he ended up asking me if he could use an elaborate thermodynamic engine design project I created so he could use it to check other peoples projects next year.
After college I had another painful episode that required lancing again. I was also too busy then to have it excised so I just continued to live with the occasional infections that would normally heal up on their own. After a another Emergency room lancing a day after a long plane flight on January 6th 2010, I had enough and went to a Colo-rectal surgeon in Cincinnati to have it excised.
I met with Dr. Martha Ferguson 1 week after my ER lancing and she scheduled me for and open excision surgery in 10 days. She is also a associate professor at the University of Cincinnati and seems to know much about all the different option for treating this problem. I asked her why she wants do an open excision instead of a skin flap or closed excision and she explained that she has done those surgeries in the past and she has found that they have a higher rate of infection. The Skin flap she reserves for people that have had previous open excision surgeries that have had the cyst recur after because it requires 1 week full bed rest.
I had my surgery on 1/22/10 at the UC University Point outpatient facility in Westchester, Ohio. The Surgery lasted 30 minutes and I don't remember any of it even though they said I might because they put me under a "twilight" style anesthesia. I felt no pain at all. It just felt like my tailbone was bruised. I actually went straight from the surgery and ate at Panera bread and got all my medication filled before I went home. I only took 1 percocet all day without any pain issues.
The biggest issue I faced was the constant bleeding. I bled through 2 supposedly water proof Abdominal "ABD" bandages and then through my underwear and pajamas. I was also sitting on it which I should probably not do. After I changed my ABD bandage for the 3rd time before I went to sleep, I decided to tape a newborn diaper on top of the ABD bandage to avoid bleeding onto the sheets over night. We happened to have them laying around because we are expecting our first in 10 weeks.
I slept on my stomach and on my side all night and in the morning the diaper did the trick and contained any blood leakage. It has been 1 full day now and my wife helped me with my first packing of the wound. I took 2 325mg pills of Percocet about 1/2 hour before we attempted the first packing after reading all the painful stories about the first packing change. We took out the 100% cotton packing slowly before I took a gruesome and bloody shower. It actually felt good. I was afraid the water would sting when it went inside the wound but it was good.
After a nice shower I bent over my bed with a towel laid over it and a towel shoved between my legs under the wound to catch any blood that was still trickling out. My wife used a Q tip to repack the wound and once again it really wasn't bad at all. It felt like a sharp pinch when she would push on the bottom of the wound bed which she gauged to be 2 inches deep. Other than that it didn't hurt at all. It was just a little uncomfortable. I had freaked myself out before the surgery that this would hurt so bad but it wasn't. Now I just need to continue to do this for the next 6-8 weeks 2 times a day and I should be rid of this problem completely.
Date: January 22, 2010
During thankgsgiving break 09 i had played a game of tackle football with a bunch of friends (tradition). After the game i had this excrutiating pain on my lower back tail bone area. I went home showered and i had this big red bump. Didnt say anything to my parents and after 4 days i couldnt stand it anymore. I went to the doctor he told me what it was and reccomended a surgeon.
I am a 22 year old male college student ready to graduate in a year and surgery was not planned. I had to have the surgery over winter break because i did not want to miss class time. I went with the closed wound because it would "heal" faster. Well i had the surgery and the first 2 days were painful. The sutures hurt and that cast thing he puts on there to cover it is literally a pain in the ass. After ten days i went back he took it off and i could resume driving.
A week later i went back and he took the stiches out, that was on a friday. That monday i went to play touch football and found a way to fall on my wound. It split wide open and went right to the doctor. I now have to pack it twice a day with gauze and all that fun stuff. I am a physical education major so i need to be active. The doctor said in 2 months i should be good to go. I had to drop 2 classes because i cant do physical activity and was pretty upset about that. Im just your average kid tryin to get through college and has to put up with this another 2 months (hopefully). Now it isnt really painful more of a burden to have to do this twice a day.
Date: January 21, 2010
greetings my fellow brothers and sisters. im a 27 year old man from melbourne australia. my first experience with pain in my tailbone was back in 2003 when at the time i weighed 145kg's, i was rollerblading to work when my legs went out from under me and i landed flat on my bum. at the time i was certain i had broken my tailbone. i had a pain that shot up my lower back that was to this day the worst feeliong my body has ever felt. for weeks if i sat down i had to do so slowly and then only on 1 side or the other.
since then i have had a reacuring wound that will inflame and blowup and then rupture then heal then go away. at first i think from memory the times between occurances were a couple months apart. at the time i was also a drug addict and was not inclined to get it looked at for fear that it was a self inflicted kinda thing that would stop if i stopped. by the time i got it looked at i had dropped to 80kg's- i say this because also at the time i thought it had something to do with my weight as well, but even at 80kgs it still occured.
after i kicked my dirty habits i went to the doctors. all he said when i pulled my pants down to show him an inactive wound ( i showed him regardless because i knew it would come back) was oh thats ok. come back if it starts upsetting you again. (im about to see this doctor again soon and am going to refresh him of this). this was in 2005ish. since then i have just lived with it. an embarissing situation that i was sure up untill now that i was alone in suffering. it is basicly constantly active now due to spending more than a year sitting on my bum due to 2 major shoulder reconstructions- nothing to do except heal and play video games.
i first heard "pilonidal sinus" just before my last shoulder operation when i finally went to the doctos again ( a different 1) because the bone around the wound had started to hurt- i was fearing gangrene or some sort of bone infection. he took 1 look at it and told me it was pc. it wasnt until last night that i even had that word memorised. i hadnt heard a peep out of it for over a month and i thought just maybe it was gone this time but over the last couple days i felt that familiar sharp itchyness that signifies its imminent return to activity but i left it hoping a shower and an application of soap to the area would quieten it down.
last night however i was laying in bed and i felt as i moved something sticking to my bum hairs. i had never seen this come from it b4. the stuff it had discharged this time was incredibly sticky (not unusual) but it was also verging on black in colour. this inspired me to start learning as much as i can about this as i thought for sure there was something terminaly wrong there. so i would like to thank you all for your inspiring stories regardless of sucess or not. i didnt even know it was a disease up untill last night. i am now very keen to get rid of this curse once and for all but will have to wait a little while for action to be taken because ive still got a couple more weeks of having my arm straped to my front from the last shoulder reconstruction (its been nearly 4months now). good luck to everyone of my fellow sufferers of this disease. i will keep u posted as to my progress as i attempt to get this sorted. cheers.
Date: January 20, 2010
I'm an 18 yr old male and have been dealing with pilonidal cysts since 14. I have never had pain with my cysts, instead I get an opening and drainage. My experiences with these things have been bad. My first cyst went completely unnoticed by me since I was an ignorant 14 yr old, but everyone else knew. They knew because it had abscessed and was extremely smelly and I unfortunately have a very poor sense of smell and could not smell it.
When I saw the doctor about it she didn't look at the area, instead she took an x-ray and said I was constipated and told my mom to give me a fleet enema that day and they next and to increase my fiber. When my mom went to give me the enema she discovered the hole and took me back to the doctor the next day. This time she looked at it and had no idea what it was so she set up an appointment with a surgeon to see what he thought it was.
The surgeon took one look and knew what I had. He told me to keep it clean and take antibiotics until the infection cleared then he would operate on it. This first operation was more than expected. The cyst was huge and according to my mom the wound was the size of a grapefruit and you could see my tailbone. Since the cyst was so big they obviously could not close the wound. Instead the surgeon decided to wait until there was enough tissuse and then close the wound. This would be a mistake.The surgery to close the wound would invovle the surgeon and a plastic surgeon. This surgery did go as planned and everything seemed fine. Then I started to drain again and at my post-op appointments told the surgeon this and he said to see the plastic surgeon.
I went to the plastic surgeon and he said to see the surgeon. Neither doctor did anything they just kept tossing me back and forth. Eventually I had a second opinion and this surgeon was shocked at how I was treated and said that method of treatment was old and rarely effective. He had a completely different method that was flexible and more effective. There was only one problem my insurance wouldn't pay for anything he did, so I never got treated by him. Instead they gave me a list of surgeons they would pay for and to see one of them.
I went to one of their recommened surgeons and she had a better treatment. What she did was she went in to see what was going on and then left the wound open and ordered some sort of vacuum pump that sucked the cyst out and closed the wound at the same time. This worked really well, but unfortunatly for me the cyst came back. When it came back it was caught early and was only a tract and was easily removed.
Then in August of 2009 I got to go to China and it took 24 hours to get there and 15 hours to get home with some much sitting I started to drain again, but this time it went away on its own and a about a week before Christmas it opened up again and stayed open so I went to the doctor and she operated again. She removed a small cyst and said if it comes back I should see a plastic surgeon for a more radical treatment. Hopefully it won't. I have become more aware of what seems to trigger the cysts and I try to keep the area as clean as possible. Because of my experiences I have decided to become a doctor and I hope that the next time I see a pilonidal cyst it will be someone else's and they'll be in good hands since I have personal experience with this disease.
Date: January 19, 2010
I am a 19 year old male who first heard about pilonidal cysts 1 year ago. It started one night with some pain in my lower back, and then eventually the draining of a good amount of blood, which scared me and prompted me to the local emergency room. It didn't take long for the ER doctor to see the cyst, and he sent me to a general surgeron about 1 week later. Within 2 weeks I was in surgery, the surgery I decided to go with under the advice of the surgeon was the open excision, with packing 2x daily. After the surgery I didn't feel much pain and was sent home a few hours after the surgery. I went back the next day for the first packing, as was very painful. I was on hydrocodone for the pain which helped alot. Fast forward 5 months. The surgery didn't seem to help me, and the surgeon kept telling me it looked perfecft, but I knew better. and decided to go for a second opinion with another surgeron. This new surgeon said it was far from perfect, and the very next day I was in surgery again, this surgeron did the closed surgery, and I actually felt MORE pain during the recovery with this one. it has been 2 months since the surgery and it is still not healed, and I fear it has returned yet again. I will more than likely go in for a cleft lift surgery next and hopefully be done with this terrible thing.
Date: January 18, 2010
I am a female in my early 30's. So far, I have had a successful experience with surgery to remove my pilonidal cyst.
In March 2009, I noticed that my tailbone was sore. I didn't remember falling or anything, so I thought it was odd. I didn't think a whole lot about it until about a week later when the pain became excruciating! I got into my primary care doctor later that day who diagnosed me with a pilonidal cyst that was definitely infected and draining. She prescribed antibiotics and prescription pain meds. She also referred me to a colo-rectal surgeon.
I couldn't get into the surgeon for a week. The pain during this time got worse and worse, and I even had a fever from the infection. When I finally got into the surgeon, she took one look at it and said she didn't know how I lasted that long. She called in a nurse and immediately lanced it. She said it was the worst she had seen in a long time. I have to say that the lancing was extremely painful, even though she did use a local anesthetic. When it was finally finished, I got up to check out at the desk and suddenly felt faint. I had to return to a room for a while until I didn't feel dizzy anymore from the pain. It was embarrassing, but the office staff assured me it wasn't a rare occurence after a lancing.
The surgeon sent me home with stronger pain meds, a stronger antibiotic, and said I should schedule surgery. She said the cyst was very large with 3-4 sinuses and the likelihood of an infection recurring was pretty high. I scheduled surgery 2 months later when I was out of school (I'm a teacher). She said I risked it recurring in those 2 months, but I couldn't afford to take time off work to have surgery any sooner.
Two months later, I had surgery to remove the cyst. It was outpatient surgery, so I left the hospital afer spending several hours in recovery. I was under general anesthesia for over an hour, since the surgeon said my cyst was very large and went down to the bone. I had a closed incision, with inner and outer stitches. I also had a drain coming from the wound which I had in for 5 days.
When I first came out of anesthesia, I was in an immense amount of pain, but it was pretty well-managed after that with prescription pain meds. After a couple of days, it became a little more tolerable. However, I was pretty much immobile for 2 weeks, which was very frustrating. My wound seemed to be healing well, and I got to move around more, when I notice some drainage. I went back into the surgeon who said there was a small area that had not healed, so I had to pack that area for 3 weeks. I know packing sounds scary, but it wasn't really that painful--it was more just annoying, and it definitely helped heal up that wound. I am lucky that my husband is in the medical field, and he did the packing. I couldn't have done it by myself.
About 2 months after the surgery, I took a 13 hour car ride to the beach with minimal discomfort. I just made sure not to slouch right on the incision. It is now 8 months later, and I don't have any pain. My cyst and incision were so low that the scar really isn't even noticeable. I am just keeping my fingers crossed for no reoccurence! My advice to anyone dealing with this is to have the surgery, though. Also, do your research, and make sure you have a Colo-Rectal surgeon who is experienced in pilonidal cyst excision.
Date: January 16, 2010
Hi, I’m a 27 year female expat American living London. After a very stressful 2009, I’ve developed multiple pilonidal sinuses in a three month period. I’ve had two surgeries (a month apart), with the last one resulting in a 6 inch incision and a great deal of tissue removal (it literally looked like a shark bit me). Now I have a series of smaller cavities developing at the base of my open wound and infection persists even with a heavy daily dose of antibiotics. Although this condition is not life threatening, it is completely debilitating and my life has been on hold for the past three months which is all very depressing. I feel absolutely useless. It even prevented me from traveling back to the US to spend Christmas with my family. I am now trying to take control of my treatment and currently searching for a pilonidal specialist in the Greater London Area that will be sympathetic to my case and try to find the root of the problem instead of simply slicing me open and conducting exploratory surgery. If anyone from the London area can recommend a good sympathetic doctor (either NHS or private) I would be much appreciative of a referral. Many thanks, C
Date: January 14, 2010
Hello all, I am Jill.
First, I am so thankful to have a specific and knowledgeable website dedicated just to Pilonidal's!
I first noticed my Pilonidal cyst/abcess like four years ago when I was 20. I felt the bump but didn't think much of it until one morning I woke up in excruciating pain and I couldn't do A THING! My mother took me to Patient's First which is a dinky clinic place where they lanced it. They told me I had this birth defect to cause it, which at the time I didn't understand. So then after they lanced it, I had a small blister looking thing which didn't hurt and sometimes leaked but atleast it wasn't hurting so I shrugged it off (I also didn't have healthcare insurance at the time). I had that blister looking thing for two and a half years until my boyfriend told me to get it looked at.
I got it looked at and was imemdiately told to have surgery right away. I scheduled my surgery date and post-surgery, it was the most horrific experience of my life. So painful, etc. The doctor told me there was a 20% re-occurance rate and I didn't I would be one of the unfortunate souls to have it come back, but lo and behold it does! I still have the blister looking thing that sometimes flares up and leaks and now I can the big lump around the same area. I have another pre-op tomorrow with my surgeon if I really needed this done or if I can just suck it up and deal.
Well, today I found this website and it helped me learn more about my disease and saw the section about "Congenital Pilonidal" and it made so much sense about what the previous doctor has said about a birth defect. This basically sums up for me that this will be a life-long annoyance and will let my surgeon know tomorrow and ask him questions regarding this.
Date: January 12, 2010
I have joined this site on behalf of my son.
Our story started just over 2 years ago when he was 15. A small bump draining on the top of his buttocks area. To the G/P we go, he lanced it and told us it was a cyst.
Now he is 17 and has had(SEVEN) major operations to try to heal this CHRONIC-REOCCURANT PILONIDAL SINUS. His procedures have included a VAC system and his most recent which was December 16th consists of a Plastic Surgeon doing a Flap on him. We returned to the clinic last Friday to have stitches removed 32 of them...and low and behold what did I see.....2 new track holes forming close to my sons anus. The surgeon said there is nothing more he can do for my son...This really really upset me...we have been to 4 (FOUR) different specialist to have operations done. One of these surgeons tried 3 times to fix my son before giving up on him.
Yesterday I went to see our G/P, told him about my son, he actually had the report in front of him. He suggested that he would try to find a doctor in the Toronto area that specializes in this type of thing. He said here in Nova Scotia there is not a need for such a doctor because the re-occurant rate is so small. We are at our wits end and do not know where to go from here. My son has had a low grade fever for 2 years now, they tell me this has nothing to do with his condition but I feel differently. He has been very sluggish with no energy for the about the same amount of time... WE NEED SOME HELP HERE...I FEEL LIKE I AM ALONE IN THIS FIGHT TO HELP MY SON. IF ANYONE HAS ANY SUGGESTIONS PLEASE DO NOT HESITATE TO LET ME KNOW....WE WOULD BE VERY GREATFULL. THANKS SO MUCH IN ADVANCE....
Date: January 12, 2010
My name is Lisa,I am a 32 year old Female from New Zealand. My first cyst was 17 years ago, (when I was 16) I was mis-diagnosed by the Doctor when I went to see him in immense pain, there was no leaking or sign of it other than my lower back was in agony. It got to the point where I could hardly walk, my parents took me to an Emergency Doctor who luckily happened to have a surgeon on site who diagnosed me, the cyst was about to burst. That night I was taken to hospital and operated on. Back in those days, they left the wound open and packed it each day to let it heal from the inside out..I am surprised to read on this site that they are still doing that all these years later.
So after about 6 months, the wound had not healed properley and the decision was made to operate again! The surgeon believed all of the cyst must not have been removed. So off we went again for round 2, this time was just as painful as last time.. and basically the same thing happened again, it never completely healed up.
As this was my 5th form year at School I was missing out on such critical schooling but there was nothing anyone could do as I was home for months with this damn thing.
After another 6 months, the wound had still not healed so this time we got a consultant to do the surgery again! so 3rd time lucky. This operation was a success! the wound was stitched up which was so much better and easier for after care and I was back to normal within about 8 weeks after the surgery.
All these years later I have never had a problem.. until this week. Can you believe it, well I am sure everyone reading this will be able to as after I have read everyone's stories it seems it's quite normal for it to come back again years later.
The only reason I found it, was I noticed a small amount of blood on the toilet paper, which seemed to becoming from directly below my previous scar, initially I freaked out and thought my scar had opened up again, but no... it was a tiny little cyst the size of a pin head. (I had to get my husband to have a look) So off to the Doctor I have gone, and due to all the trauma of the first time with the cyst, I broke down in tears when I heard the words "its a Pilonidal cyst". I just dont think I could go through all of that again.. I am starting a new job next week and can hardly afford to have time off for surgery! My Dr has assured me that there is a high probability that the anti biotics will sort it out, as it is so small, and then when sent to see the nurse to have a look she said she thought it definilty would as it was too small to put any type of dressing. But only we on this site know how nasty these things can be and it seems there is no rhyme or reason for if they flare up or not.
Anyway, good news is.. I am taking 4 x anti biotics daily and this morning there was no blood and seems to be minimal discharge so fingers crossed the anti biotics are killing it.
I had no idea how many people have suffered from this dreadful disease until finding this website, my heart goes out to each and every one of you. I totally understand the frustration and the pain of the process involved.
I will update this again next week when I visit my Doctor to see what my outcome is going to be. I am trying to be positive and everyone around me is been positive and telling me the anti biotics will deal to it, god I can only pray.
Take care everyone, and rest assured you could get 17 years of no problems like I did.
Thinking of you all, Lisa
Date: January 11, 2010
Im a 21 year old female and I had my first pilondial cyst when I was 16. It was huge and embarrassing. I had the surgery done and no problems for 4 years...until Easter of last year. A second one developed. I was due to have it operated in August but it didnt flare up between that time so there was no point. Then it flared up again in Sept and so....3 months later in Dec I had the surgery. The surgery itself wasnt bad....no pain or anything. However, now, my old scar has started to bulge out. Taking some antibiotics at the moment so its slowly slowly going down. Its nice to see that other women suffer from this and are brave enough to post their experience on the forum :) x
Date: January 10, 2010
CLOSED METHOD: It is currently January 10, 2010, 04:08 am eastern. (I work over nights). I am having surgery on January 12th. I first met my pilonidal cyst November 22, 2001. Yea, over 8 years ago. I only remember it being that day because I get together with friends and play pickup games of football a lot, and always have, and we play every Thanksgiving day as well. And during that game, I remember falling on my back on some lumpy, frozen grass. It hurt but I thought nothing of it. During Thanksgiving dinner I kept feeling more and more pain and figured I must have bruised my tailbone, and I left it at that. I dealt with the pain through the weekend and went back to college in Boston on Sunday.
A few days later it wasn't getting any better, but in fact worse. The swelling grew, more pain, etc. ( you all know how it goes). Little did I know wtf was going on and that it was actually puss building up. So the lump got huge. It literally looked like a golf ball (but bigger, little less than a baseball size) sticking out of my back when I turned sideways and looked in the mirror. Then I went to bed Friday night ( a whole week later from the cysts "birth." I know we are born with these things but you all know what I mean) and woke up in the middle of the night and could feel no pain. But I was wet. Yea it popped. I went to the bathroom in my dorm room suite (Praying no one woke up and walked in on me). Thankfully it was a Friday night so everyone was passed out from a heavy night of drinking, which I never took part of. So I was in there for 3 hours just pressing the cyst and pushing out all the puss/blood. Went to the school doctors office the next day and they told me that I had a pilonidal cyst. Didn't know what they were talking about. They just told me to keep an eye on it and go to the ER if i get a fever.....Whatever...Thanks..College tuition doing what it does best....nothing...
I dealt with it for the next month, constantly pushing out the stuff and bandaging it up. Went home during xmas to see a doctor. He told me to keep the area shaved and that surgery wasn't the best idea because it wouldn't work. I was happy. Cause I hate doctors, hospitals and the idea of going under the knife. Well, nothing really changed until the following September of 2002. I was starting my sophomore year at college and one day I went to the bathroom to push out the days's work of puss that built up (which wasn't much really). And a bunch of hairs came out. I was freaked out. Doc never said anything about hairs. But whatever. Figured that might be what was causing this whole thing to begin with so i was actually happy and hoping it was the end. Plus I broke up with a girl friend a little later that day. Overall, it was a great day.
Over the next 7 years, to my dismay, the cysts flared up, from time to time. I would go months with nothing except a new belly button on my back side. Then it would flare up for a week and build up that sweet smelling puss/blood concoction. I studied about the cyst from reading things online and on this website in particular. Learning about the failures of surgery and horror stories from many. So I was adamant I was never going to have it done. I even bought some cream from some company in Switzerland I think. Its dark green and smells like sea weed. It helps draw out infections. Furncle med or something...And it does work. I pop the cyst myself when it builds up then throw some of that on there and in a day or two its all gone.
I am a very, VERY active person and a nasty health freak. I'm 5''7', 135 lbs. So skinny, but not grossly thin. More athletic build. But now I do a lot of sitting on the job and in the future, (police work possibly) it will not get any better... So, I looked into surgery because when i sit for more than like 10 minutes at a time now, I can feel that I'm pissing it off. So i sit for a few minutes then get up. I do a lot of standing. So I went to the surgeon prepared with facts and questions that I've learned over the years. He only does closed excision. Which is fine with me cause I want it healed ASAP. But I hear and see all these stories about how closed fails. So that got me nervous. My doc said about 80% success rate and he wasn't concerned for me because I'm not over weight, so it shouldn't be a problem.
I guess my main concern is that I waited too long and maybe its worse than what it looks like on the outside. It has had years to tunnel and do whatever in there. I'd rather deal with it like I have been for the rest of my life than have to have multiple surgeries and complications. I have a high tolerance for pain/aggravation. I'm stubborn. Plus surgery alone is freaking me out. Don't like needles and felling sick so, I'm trying to prep just for that stuff. Having to deal with problems post surgery is a whole separate issue. I'm thinking I should have gone to a different surgeon. One I saw a year ago, who does the open method and uses the vacuum thingie.
Well, no turning back now. Hopefully it doesn't get infected or come back in the future. Oh yea...How the hell do you go to the bathroom with it??? Anyone? lol. I imagine its tricky, especially the cleaning up part. I worry about these little things. Ill post again sometime afterward and let everyone know about the pros/cons of the closed surgery
Date: January 10, 2010
Hey everyone, I am a 19 year old male and I have had 5 surgeries on my Pilonidal cyst. The first surgery was in December of 2005 and I had the cyst removed. No problems whatsoever. But by December of 2006 the area had opened and was draining. We tried to get it to close by burning it with silver nitrate, no luck.
In the summer of 2007 I had my second surgery. This time we went to a second surgeon, recommended by the first, who cut out all the bad tissue and left an open wound the size of a softball on my tailbone area. The wound was then packed with gauze everyday for three months until it finally closed up. But by November of 2007 the area had opened again and was draining.
So, in March of 2008 I had my third surgery. This time the third surgeon, cleaned out all the bad tissue and filled in the opening with my butt muscles. He then sowed the area shut and left a drain in which was removed two weeks later. I was left with no butt crack for the first 4 or 5 inches. And during this recovery period I was not allowed to bend at the waist for 2 months. I had to stand during all my classes in my senior year in high school.
Everything looked good until this past summer of 2009. I had a small opening that was slowly tunneling deeper. On December 18th 2009, I had my fourth surgery that cleaned out the small pocket that was starting to form. It all seemed good until a week later when I spiked an 101.5 degree fever and became septic with infection. I was admitted to the hospital where they took out the stitches and drained the fresh wound. I was then put on a heavy dose of antibiotics and stayed in the hospital for 5 days.
After being released, the wound was packed with gauze for a week. I then went in to have my fifth surgery and had the wound cleaned and stitched back up. I am currently recovering from the fifth surgery. I hope to be able to do things on my own in a few weeks and be back to my old self in a few months.
All I can give in advice is keep your head up and let those around you who want to be there stay. Its tough to wake up everyday and keep a smile. And I'll be honest and say that I have had my days where I want to give up. But I have friends and family around me who love me and support me through this. I know how it feels when you can't do anything but lay around all day. It isn't fun, but trust me, it gets better. Before you know it you'll be back to your old self. Good luck to everyone.
Date: January 08, 2010
I am a 24 year old female and I first noticed a lump on my tailbone when I was in highschool. I didn't really think anything of it since it never bothered me.
About 2 years ago I had my first flare up. I really had no idea what was going on or why this was happening. I went to the doctor, who ended up having to lance and drain it. I'm not going to lie, it was extremely painful, but it felt so much better after the procedure. My doctor mentioned surgery, but I really thought it would never come back.
Well, just last week it flared up again, and this time it was worse than the last. I went to the doctor who gave me antibiotics, and my infection proved to be resistant to the medication. The pain was so bad that I couldn't even sit. Today I went and had it lanced again. Although it was terribly painful, I'm glad it is gone. My life can finally go back to normal.
But I have learned some things. First, if you have a pilonidal cyst infection and you need to have to lanced, make sure your doctor gives you local anesthesia where the cyst is. Although your doctor might tell you it's pointless, or it will come out when the cyst is draining, insist on having it. It really does lighten the pain of the initial incision. Also, I've learned that if the infection keeps coming back, it's most likely just getting worse, so if you have a recurring abscess - just go to the surgeon and get it removed. It will be better in the long run. Once I'm all healed up I plan on going to the general surgeon and talking about my options as far as getting my cyst totally removed. I wish the best for all you girls, and guys, that suffer from this painful condition and hopefully this post will help you all out!
Date: January 06, 2010
I am a 28 year old female and this is the second cyst flare-up I've had in 5 years! Ever so often I can feel it act up but if I leave it alone it usually drains right away or disappears...but not this time...I'm in so much pain. I'm scared that I'll have to have surgery. I dont know if my insurance will cover it or if my employer will hold my job for me while I heal from the surgery.
I'm so grateful for this website. The cyst is one of the most painful physical experiences of my life and it somehow makes things a little easier when you know that other people have experienced this too...especially for the embarrassment factor.
Both times that my cyst has flared up have been after road trips. My ex-boyfriend used to get them too and his flared up when he had to make deliveries for his job or when he had to use the forklift! People that have never experienced them cant fully understand the pain. Every move I make hurts! I cant sit comfortably, lay down comfortably, and I just cant stop thinking about it.
\The first time my cyst flared up it drained on its own. I went to the doctor and they gave me antibiotics and vicadin. I'm hoping that with this flare up, it'll do the same. I went to the doctor today. I received very little advice and was prescribed only antibiotics. I'm also currently suffering from a cold so the doctor gave me cough syrup with codeine to treat both my cough and the cyst. Hopefully the cyst will drain before the cough syrup runs out! I'm thinking about getting the surgery because I dont want to have to go through this again! Thanks for listening!
Date: January 06, 2010
Hello, I am a 34 year male. When I was about 19 years old I got my first flare up. I did not think much of it Since I have a very high pain tolerence. I used to box. Embrassed About what was going on downthere I simple chose to ignore it And live with it. I have lived with it for the last 15 years of my life Always being careful and buying lots of band aides, juts in case I need to drain. I would drain it my self when I felt it was getting swollen. I was shocked because after 15 years it has stop getting filled with Pus. I don't need to drain it any more. I don't feel any lumps, all I see Is the scars. Could it be possible that its gone? If anyone has any info please email Me at nextcarlos at msn dot com
Date: January 02, 2010
PLEASE READ IF YOU ARE SCARED FROM READING OTHER STORIES.
I am happy to report my condition with a successful story. I am a 24 year old Hispanic male who is slightly over weight but I consider myself pretty active. I enjoy biking about 15 miles 3 days a week. Nothing impressive.
I lived with this condition for approximately 8 months. I started getting a pain in my tail bone area around April of '09. One day while getting into my car, I drop down onto the driver seat pretty hard. Thats when I felt a small pain in my tailbone area. I didn't pay much attention to it. A couple of weeks later, I experience my first flare up. It was the worst of many flare ups to come. The flare up did not come with any discharge but did bring a fever. I was out in the rain the day before so I blame the fever on that.
The flare up lasted for about 5 days and then went away. The flare ups began to reoccur every other week. Some where not as painful as others and did not last as long. I learned to live with the pain and did not try to internet diagnose it.
In around mid October during a flare up , I decided to go biking. During the ride I began to feel a cool liquid discharge coming from the flare. When I got home I discovered the flare developed a head and red and yellow discharge was coming out of it. I also discovered after that there was no pain coming from the flare after it discharged. I kinda freaked out. I hit the web and found this website. I then got more scared reading some of the stories I found on here about the multiple surgeries some people had to go through. I can't be away from work for multiple surgeries. I decided just to ignore it again and not tell my wife because she would of just dragged me to the ER that minute.
After that whenever I was experiencing a flare up, I would heat up a safety pin and a pocket blade and would "lance" it (not recommend to do). Finally after a couple of months of research I gave in and decided to see my doctor about it on November 30. I was afraid if I kept ignoring it, it would just result in a more serious condition. My doctor confirmed it was a cyst and referred me to a surgeon. My next fear was how the surgeon was going to want to treat this. I did not want him to leave an open wound. I did not have time to have the wound repacked 3 times a day with my schedule.
After the surgeon examined the cyst on December 7, he assured me that he had seen worse and that it was the smallest he had seen. He stated it was a good decision to take care of this early and not wait a couple of years like some people do. He then advised me that he would stitch up the incision which made me very happy. I had the surgy on December 15. The worst thing that came out of the surgery was a massive hangover from the anastesia. I threw up alot that day. Other than ripping off the bandage I was in virtually NO PAIN. I only had 3 stitches and the incision was about 2 to 3 inches long. I didn't even have to use the narcotics the surgeon prescribed me (saved those for later ; )...... ).
The surgeon did tell my wife that I did have a pretty long track and the cyst was moving further into me. I took 2 weeks off from work and spent the time being pampered by my wife. I love her soooo much and she is the reason I made it through my recovery (also modern warfare 2 on my PS3). I hate being off from work and being unable to do things for myself. That was the worst part of it.
My post-op appointment with my surgeon to remove the stitches was on December 28. He said my wound healed fast and healthy. I think my condition was a blessing in disguise. I say this because in my line of work, we dont get the holidays off. I got to spend time with my family during Christmas and for the first time since I was 16, I had absolute no responsibilities, no job, or a schedule to worry about.
My wife and I are closer than we have ever been and I appreciate her more than ever now. During those two weeks my wife and I went to the movies alot. LOL. I felt as if we were dating back in high school again. If you are reading this and contemplating about getting treatment, I strongly recommend not to wait. The more you wait the worst you get. In some cases it is not as bad as you think it. God bless and have a Happy New Year. If you have any questions about my condition please feel free to email me at ray851 at live.com....P.S. Avatar is great movie!!! : )
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This Archive was Posted: 07/29/2010.