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Date: October 29, 2007
StoryMy son has had 3 surgeries this year for pilonidal abscess. We were very surprised at the lack of good information about aftercare from the surgeon. The first incision never healed properly and necessitated the second/third surgeries. This time I looked up a wound care center nearby and we have seen the doctor there twice. He gave us samples of Prisma to put in the wound, and OMG! The healing is incredible! He says this stuff is really expensive but man, does it work! My son's wound was about 1/4" deep when we started and it is already half that deep after only one week. We change the dressing every two days with Prisma. I'd recommend anyone with this problem to see a wound care specialist after surgery to make sure you get the most up-to-date info on taking care of the wound. Good luck to all! This disorder is really a scourge and I hope everyone is able to get the help they need.
Date: October 29, 2007
StoryIn july 2006,i found i was in alot of pain and could hardly move around,the bottom of my spine was very swollen so i went to see my g.p.He said i had a swollen coccyx and should take anti-inflamitary tablets!
By the end of the week,i was in a serous amount of pain and when i stood up i noticed the back of my trousers were wet! it was a smelly brown fluid that was leaking out of me,i was very scared!!! we went straight to the hospital and the doctor there confirmed i had a abscess that had burst,he carried on to say i would have to have surgery the next day to drain the abscess and cut out any badness.
The operation went fine and i was home the same day,i had a district nurse to come and pack the wound with gauze everyday,the wound was deep and had to be packed 6cm's.This was very painful and i dreaded every day.
Afer months of packing the wound still didnt get any smaller so the nurse decided to send me to see a consultnt who took one look and said i needed a closed surgery,i agreed to this as i thought it would get this thing out of my life!! i had the operation in february and it was stitched and covered with a sutre pad which was also stitched to my bum.after two weeks of complete agony,the stitches were removed,i thought everything was ok,until i had my next consultation and he realised there was another sinus it was quite deep and in time got very,very painful.icould not carry on with this hole it was stopping me gettin exercise and i could not sit properly,it was stoppin my life!! Just had my 3rd operation another closed surgery was the only option i was given,again after havin the stitches out,there is another sinus!! my doctor does not know wat else to do! could any one please give me some advice im 20 years old,and this thing is driving me crazy!! my email address is leannehardisty554@hotmail.com,please help if you can
Date: October 26, 2007
StoryI found out I had PD instead of an unsightly humungous pimple on my backside. My Dr. explained a little to me and I googled to find out more and found this website. After reading many of the horror stories of this embarrasing disease, I was petrified out of my mind on what to do. Needless to say I had my cyst removed in 2005, treated as an open wound to heal from the bottom up. After 2 years, not a problem at all. I'm 41 now. I did have one Dr. opinion to remove it and sew it shut which I knew was not a good option in my research findings. It's not as bad as most of the horror stories you read here, but obviously everyone is different. I can say that the longer you let it go, the larger and harder to remove the cyst becomes. Do your homework and check out your Dr's experience with this before going with any treatment/surgery. Aferwards, keep the area clean and shaved - you'll be fine.
Date: October 25, 2007
StoryCollin - Nashville, TN 10-25-07
Just got out of surgery this afternoon. I've been suffering with about 2 flareups per year for about 8 years and this was my first surgical undertaking.
So far is hasn't been so bad. My doctor, who is supposed to be extremely well experienced with PD, recommended a partial excision for various reasons based on my needs and his experience.
The surgery from what I understand could not have gone better. The doc said it is very likely I won't have any more problems in the future and I surely hope this is true. This is dependent, of course, on the many follow up visits and hygeine practices that will follow(i can just see those co-pays adding up!). My first follow up is in 10 days.
One of the biggest things he has stressed, next to obviously keeping clean, is hair removal. He has recommended plucking the hairs which scares me as much as the surgery, but we will see how that goes.
Anyway... for now I'm in very little pain. I do have some pills but i don't see myself taking very may of them. Doc said i may not need them at all.
I'll keep you guys posted.
Date: October 25, 2007
StoryI developed a pilonidal cyst and waited until I could no longer take the pain to go see a doctor. I woke up yesterday morning in so much pain I went to my local ER. They advised me that they had to drain it. I never expected to go through what happened next. I was given 7 shots to numb the area which hurt very bad and then the doctor put the scalpel to me back and I jumped and told her I could still feel it. She told me that there was nothing she could do and proceeded to cut me. After that she started applying pressure to drain the cyst. Since I was not numb this procedure hurt so much I was crying. She actually had the nerve to ask me why I was crying. Then while draining the cyst she told me she did not make the incision big enough and would have to cut me more. I refused and she said she'll just have to do her best with the cut she made. I don't know about anyone else but I think that was wrong. In this day in age we should not have to experience so much pain.....
Date: October 21, 2007
StoryI had a pilonidal cyst removed about 3 weeks ago. The doctor opted for closed wound, which I now know was a bad choice. I wish I had stumbled across this website before the surgery!
The surgeon closed the wound with a few stitches, and had two additional sutures "bind" the cleft together to isolate the actual surgical wound from shock and movement.
The suture "entry points" (4 of them) all became infected, and I got antibiotics for 2 weeks.
I was to remove all stitches 2 weeks after the surgery, and I recently did just that. It turned out the wound hadn't healed at all, so now it's healing from the ground up as an open wound.
I have to change the dressing on a daily basis, which I have medical professionals do at my GP's office.
I wish they went with the open wound approach from the get-go, as I've basically wasted two weeks of healing time.
So, again: This website is a great resource on this topic. I just wish I had discovered it before I had the surgery. That way I would've been able to take part in the decision-making regarding surgery strategy.
I got very little information regarding healing processess and wound care from the hospital. Once again -- What I know, I've learned from this website.
The good thing is that I'm no pain since I removed the stitches, so I hope it works out from now on.
Good luck to the rest of you out there who also are members of the Pilonidal Cyst club!
Date: October 21, 2007
StoryI had my surgery on the 17th and I fully recommend the cleft-lift procedure for anyone considering having their pilonidal abscess removed. I had a number of sinuses and a rather nasty cavity that were excised by Dr. Marc Brand of Chicago. The procedure is not only closed-wound, which means a shorter healing time and FAR less management, but also has a high success rate as far as recurrence (something like 95% of all procedures are compeletely successful). Despite my discomfort now, I will hopefully be back on my feet in a couple of weeks. If you have the insurance and the money for this surgical option, by all means go for it. <paragraph> As a sidenote, this website is a fantastic resource for anybody suffering from this nasty affliction. Without it I wouldn't be have found Dr. Brand and, hell, probably wouldn't know what was wrong with me!
Date: October 18, 2007
StoryAt 31, I am at the point in my life where I can finally just laugh my "butt" off about my dealings with my pilonidal abcess. When I was 17, a senior in high school, I noticed some discomfort on my tailbone. I ignored it, toughed it out as long as I could, too embarrassed to mention it even to my mother. When the lump got to be the size of a golf ball, I went to Mommy...who, thankfully, had nursed my dad through his pilonidal abcess flarings during their marriage. She knew immediately what it was, got me to my doctor, and it was surgically removed. I was mortified to read that it was a "hairy, sweaty man's disease" and never spoke of it.
Fast forward 10 years and I was 27, expecting the arrival of my first child. During my otherwise flawless pregnancy, I had to rush my gushing behind to the ER 6 times because the stupid thing kept filling and bursting at the convenient hour of 5:30 AM. The great thing about being pregnant, though, is that I was always seen immediately even though my condition had nothing to do with my pregnancy. My poor husband even had the "pleasure" of popping it for me once...oh, the embarrassment! He still ribs me to this day.
So, in closing, put aside any embarrassment you may be feeling, take care of your tushy, and smile!
Date: October 17, 2007
StoryI had my surgery on 10/4/2007 in Fargo The surgeon did an excellent job I have only had minor discomfort at its worst My daughter has been my nurse at home and has done a great job of changing dressings and packing Make sure you ask about AquaCel for packing It is full of good medicines to prevent infection Should have had this done years ago Had it lanced 8 times over 24 years Don't delay, get it done Pat
Date: October 15, 2007
Story Laugh it Up!
Facing the dreaded dragon of surgery myself, I am very pleased to have found this informative web site. My story starts 12 years ago. I had a horrible pain in my tail bone when I was about 14 years old. I thought I had broke it, I even told my Mom, but she said there wasn't much that could be done for a broken tail bone, so just wait it out and it will get better. She was right, 2 months later, the pain eventually went away. Oh, the bliss of ignorance.
I was married at 21 and had my first child the same year. The tramma of child birth had upset my "broken tail bone". I finally went to the doctor and I was informed that it wasn't broken at all. I was in excruciating pain so, arrangements were made for the next day to have the procedure where they cut it open so it can drain.
As a newly wed, having to face my husband and asking him if he can dress my butt wound was just the ultimate humiliation. Surprisingly, he wasn't grossed out. He laughed it off and said, "Bend over and spread 'em, Baby!" The first week was pretty painful,but after the whole packing scene was over, I just had to wait for it to finish closing.
Unfortunately for me, the tiny little hole that was left over, wouldn't completely heal. I would refer to it as my second butt hole just for giggles. Though, it wasn't so funny when I had to go into the doc every 2 weeks to have the second butt hole burned to help promote healing. Yeah, that lasted for 6 months. I should have had the surgery, but for some reason the doctors wanted it to heal first.
Eventually it healed, but then I had my second child almost a year later. Once again, the beast was awakend. This time it was treated with antibiotics in it's very early stages. A week later, I was good to go.
That was 3 years ago and here I am now. All of the sudden, for some unknown reason, around my period it will flare up. Last month it was a little sore and it went away. This month, I wasn't so lucky. The scar from where they cut it open feels as though it's tearing open. It feels very much like someone gave me a paper cut on my crack. I'm going in for antibiotics in a couple days, but surgery is inevitable.
This is the most painful thing that has ever happend to me and I have learned something very important. Keep your head high and laugh it up because if you don't, the pain and humiliation will swallow you. Besides, there is just way too many ways to find humor in this situation. Okay, not that I haven't bawled my eyes out, but when I call up my friend and ask her, "How good a friend are you?", she knows something serious is about to be proposed and then I bust out with, "Um, if I have surgery on my butt crack, would you be that special friend who...." You just have to Laugh!
Tessa, Washington
Date: October 13, 2007
StoryHi. I visited this site daily to see how other people were coping with this disease until I had my operation, reading peoples stories, and for all the people out there still living with a pilonidal cyst I thought I would share my story. It all started when I got a lump on my tailbone and went to the Emergency Room to get it drained. They lanced it and packed it with gauze. It eventually came back. Over period of approximitely 5 or 6 years I had it lanced and packed several times, and it always came back. I would be in the shower sqeezing it, trying to squeeze all the pus out, often it would shoot all over my shower doors and my shower walls. It would drain in my sleep and I would wake up with a wet smelly pus spot in the back of my underwear. I never had insurance so I could not get the operation until a few years ago.
When I finally got insurance, I went to the doctor and he performed the 'open procedure' on me. I was scared to death because of the pictures I saw of people who had this proceedure, but it turned out for the best, and, everyday I am greatful I did it. Since I waited so long to get the surgery, the cyst was about the size of a tennis ball and when they were done, I had about that size of a hole at the top of my buttcrack. My friend Rachel changed the packing everyday, twice a day. At night, and in the morning after I took a shower. If you have the open procedure it is important to scrub the inside of the whole. I used a lufa and the massage setting on my shower head, pointed directly into whole. It is important, because you need made sure it does not form a scab, creating another 'pocket' for the cyst to form in. It also allows fresh healthy skin to form from the inside out, which eventually cures you of this disease. Every day, the whole got smaller and shallower until finally it was completely healed. Today, it is barely visable, unless your looking closely for it. I had a great doctor and I recommend the 'open procedure' for anyone who has a pilionidal cyst. If you want to know more you can send me an email. Ill be happy to answer any questions or concerns you might have. eric2802000@yahoo.com
Date: October 13, 2007
StoryHi! I am now a 26 year old female and I had my diagnosis, lancing and surgery three years ago. First off, my doctors belive that my pilonidal cyst began due to blunt trauma (a fall) to the area almost 12 years ago. I had sufferd chronic tailbone soreness and stiffness since the initial accident but after many trips to the x-ray clinic is went undiagnosed. I belive the main reason for that is because I NEVER had any drainage or swelling.
Even when the pain was at it's worst, when I could not sit, lay down or even stand up straight without crying; the area was never swollen or even red.
When the pain became unbearble (and after nearly three days without sleep) of course it was over a long weekend and my doctor was out of town, I went to the emergency room and was diagnosed there. I was referred immediately to a surgeon who lanced it about 5 minutes after I got to her office. This was easily the most painful experience of my life. My mother had to leave the room becuase she couldnt listen to me scream that much. I had an amazing nurse in the room with me who held my hand the whole time. After I nearly broke all her fingers she told me that she had had the same procedure done and
delivered two children without drugs. She said she would choose natural childbirth over a pilonidal cyst any day of the week.
I do not mean to scare people by saying this...I felt immediately better afterward, I mean I could sit in the car on the way home!!!!
My doctor explained that i could have a surgery to remove the cyst or take my chances with another flare up (she also explained that even with the excision surgery there was still a 20 % chance it would return anyways) but I decided to go with the surgery, and I whole heartedly suggest that others do the same. Yes, the recovery was long, and I had to sit on a cusion at work afterwards (and yes this inspired many jokes) but, while I still experience stiffness in movie theatres and planes I have never had a reoccurance and am so grateful for it!!!
Be stong, it will go away just be aggresive with your treatment options, and rememebr that packing a hole above yoru ass for a month seems like nothing a year later. I know it is painful, stressful and embarassing (i had my butt cheeks taped apart for pete's sake) but it was all worth it to be able to sit down again.
Utilize the stories on this site, they are a full of first hand knowledge!!! Good luck everyone!!!
Date: October 11, 2007
StoryMy son has had pilonidal disease for two years and a few months been through 5 surgeries ,2"procedures", and now hopefully his final surgery with Dr Tom and Dr John Bascom. I forgot to mention 1 related surgery on his leg as well. All that we had learned about pilonidal disease prior to meeting Dr John and Dr Tom Bascom was useless information, even what we had known to be the "cause of the disease " is different... It seems it was a surgical wound that could not heal, because it was in a difficult place to rid itself of bacteria. I have learned so much in these past 2 days from the doctors, that I felt compelled to write.
If you have had several surgeries, please find a Dr who knows the "Bascom technique", If for some reason this surgery did not work, I still know in my heart of hearts that this is the best place in the WORLD for my son right now. Please don't waist anymore time, there is a list of doctors on this website that know the technique. I knew that I wanted to go to Oregon to have my son treated by the man who knew more about pilonidal than anyone in the world. My other options were Greece, or Australia, I'm partial to the Great USA when it comes to medicine. I got a father and son team, how lucky for my son. We did not Know how we were going to afford the trip, my pastor said what can we do to help? Before I knew it $5,000.00 was raised by my church and here we are in Oregon in the care of Dr.Tom and Dr Bascom. We have no doubt that this is a "God thing". We are blessed, my son has been in the hospital for 2 days thus far. The nurses at Sacred heart are so good to my son, they cater to his every whim. I forgot to mention one more thing, the doctors have answered every one of my questions, and really listened to me,and they did it with a smile. This website has your answers. Thankyou for your time,Dori G Oct10
Date: October 10, 2007
StoryOver two years ago I had a cyst that grew and ruptured, then started growing again. I read about homeopathic remedies and bought Calendula in liquid form. I drank 30 drops with water twice a day and my cyst started healing. After a couple months I felt like something might be starting again so I bought Calendula in gel form and put it on a few times a day. The cyst healed completely and I've been free of it for over a year! You can get Calendula gel at Whole Foods.
Date: October 10, 2007
StoryI went to the doctor in August 2006 because I had had pain on and around my tail bone on and off for many months. I felt down there and found a bump and was convinced I had cancer. I was relieved at first that it was *just* a cyst. But my general experiences were pretty bad. I'll never say "just a cyst" again.
My surgeon had a good reputation among the medical professionals, but he was cold and misled me. He said that I would need someone to change the dressing three times a day for two to four weeks. After the surgery, he said it would be eight to twelve weeks. When I asked why there was this difference, he first denied saying two to four weeks, then said, "Oh, i thought you could change it yourself after that."
I was 47 years old. I'm not a contortionist.
I'm a single mother and the wound was too "icky" for my 14 year old daughter to deal with. So my mother and a neighbor who is a nurse took care of me.
I soaked in the tub three times a day and they changed the dressings. But the wound healed very slowly and not very well. The wound also didn't heal evenly and I had to go to the doctor's office twice a day for several weeks to have them change the wound.
I am lucky I have been in my job for a many years or else I would have probably been fired. If this happens again, I will take medical leave.
I wish that I had done more research on my own before the surgery. I trusted my doctors in ways I generally don't. I wish I had read your site more thoroughly. You offer really good, solid advice and I wish I had availed myself of it before I let the surgeon cut me at all.
Thank you.
Patricia
Skokie, IL
Date: October 10, 2007
StoryFirstly, I am writing this for my boyfriend. He doesn’t think anyone needs to hear his story but after reading all of these personal stories I feel that its an important addition. If anything, it will let some poor soul out there with a similar story that he is not alone!
His story started off 5 years ago in the US as an avid soccer player he was constantly pushing his body and playing hard. He went to see his trainer and asked about his tailbone lump. The trainer sent him to his doctor and they determined it was a cyst. He opted for surgery immediately as it he didn’t want to risk too much time off from soccer season. As such, the doctors closed the wound with stitches. He was incredibly sick from the general anesthesia and in pain. He went back to work three days later (I wasn’t his girlfriend back then so totally not my fault). It healed fine and he went on his merry way.
Well then I came into his life and we moved to Barcelona, Spain a year ago for grad school. After fighting with the social healthcare system here for two months we finally got him looked at because he felt it had burst inside him when he did sit-ups. Below his scar there was an opening that felt funny. The doctor here said yes, it was a cyst but that unfortunately a surgery appt wouldn’t be available for several months. I immediately read everything I could about this disease, healing, aftercare, prevention etcetera. (This website is the best I have found) I wish I could have done my thesis on this instead; I’ve got all the material! (Arm yourself with information, you’ll feel more in control of what’s happening and can advocate for yourself) In the meantime, the cyst opened and drained at the weak spot beneath the scar on and off for 6 months. Then it closed on its own and we thought whew! Well after that the scar itself began to give way and turn colors and get very mushy. With just two weeks to go until the surgery we decided to wait it out and continue with the surgery.
The day I went to see him off into the operating room was very scary. Not only were they not speaking our native language they seemed quite disorganized. (Remember its ok to ask lots of questions, its your body!) But about 40 mins later I talked to the surgeon. She did not have good news. They had opted for an open surgery and had once told us that it would probably only take 3-4 weeks to heal. Well her face was quite animated when she told me his cyst was much bigger than they ever imagined from looking at the outside of him. She said that instead of 3-4 weeks it would be more like 3-4 months or even more if things didn’t go well. Oh lord what had I signed up for? When I saw him in recovery he was fine, flirting with the old nurses and relaxing. He’d had a spinal block, the best idea ever! He was able to walk the very short distance to our apartment and felt fine.
The next day I took him in to get his bandages changed. One small glimpse of his open wound and I nearly hit the floor. It was huge. It was like someone had taken a hamburger patty right out of the top of his cheeks. I could see every layer of skin and tissue right down to his muscle structure. Oh lord what had I signed up for? They taught me how to pack his wounds and what to watch for, all of it taking twice as long because of the language barrier. We go to the hospital every morning to have them clean it out and view the progress. In the evenings I do the treatment which consists of sticking him in the shower and spraying the wound (carefully) with water, laying him down, adding ointment, packing and taping him up, drugging him and putting him to bed. He’s not in any pain at all, its quite amazing since we are at day 12, but we have kept up his Nolotil pain reliever since day one just in case. (Non narcotic and seems to work well for inflammation) He never had any pain when the cyst was inside either. Its important to know that just because it isn’t causing pain doesn’t mean that its fine, it could be growing and stemming off and really becoming a bigger pain in the ass than it has to be. Get it checked out! Its still ‘bad tissue’ in your body that has no right to be there. Think of what it could be doing to your immune system if its always having to fight with this cyst. Getting it out was important to his overall wellbeing. Although he knows it could come back and that he has a long road to recovery in front of him there is still a part of him that knows this was for the best. We’re moving to his native Norway in three weeks and will continue to treat him there where at least it will be in a language that one of us speaks!
A note to caretakers: I empathize with you. This is no easy task no matter how large or small the wound is. I was trying to put his socks and shoes on him the other day (no bending that far yet) and I stopped and thought how this is so much like taking care of a child. Their health depends on how well you take care of them at this point. Its hard, sometimes harder on the caretaker than the patient. Be strong and know that you are adding value to this person’s life, know that they really couldn’t do this without you, know that you are important to this person’s healing and return to normal life.
A note to patients: appreciate your caretakers, they are sticking their fingers into your ungodly wounds and learning skills way outside of their careers because they care about you and want the best for you. You two are a team and together you’re going to make it through this. You are both responsible for the treatments and care, pull each other up by the bootstraps and Just Do It.
If you’d like to ask us questions or have us send you some photos just shoot us an email at joseharald@hotmail.com with Pilonidal in the subject and we’ll get right back to ya.
Best of luck to all of you suffering with this and thank you for sharing your stories, it makes a difference.
Date: October 10, 2007
StoryHi, I am a 33 year old in Scotland and I have had a chronic PS for 4 and a half years.
My sinus is above my clitoris and I feel its important to point out this does not just happen on the but!.
It started with a small lump that would swell and go away. Approx 3 months later the lump was the size of a golf ball and I was taken in for emergency Surgery to relieve the pressure.
It wept continually through the incision they made which never healed.
This continued and another twice I was rushed in and drained till I presented at emergency with a larger lump and was referred to a gynaecologist.
He advised it was a cyst and I had op number 4 to allow total removal, about 6 weeks later the sinus reappeared through the scar (The gyn doc seemed to think this was OK and would heal). No one seemed to know what was going on!!!!
Eventually I presented at emergency with an abscess/lump the size of a tennis ball in complete agony and almost hysterical as I had this constantly for four years by now and no one seemed to know what was going on, they called the attending surgeon who refused to operate due to all the procedures that had already taken place and said he would refer me to a plastic surgeon as he felt it was a sinus not just an abscess and it would now require reconstruction. At that point I went to leave and the abscess burst leaving a 5mm wide new sinus and a very unhappy lady and some shocked medical staff!
The Plastic surgeon gave me an appointment very quickly in about 4 weeks and knew straight away what it was, he arranged for my surgery about 3 weeks later.
When they went in they found not just the two Sinus but underneath there was a very complex structure of sinus's and cysts which unfortunately ran above and under the clitoris which had to be peeled back and cleared below it (Luckily my surgeon was excellent and managed to stitch it back on although I did loose surrounding skin but it still looks feminine).
I am now 6 weeks after the reverse Y plastic surgery and I have two sinus again but I am still in a lot less pain as the large mass below is removed and would do it again to get the relief I have now although I have had to start anti biotic again.
I did not have flare ups where it would seem to heal in between, mine would drain through the surgical incisions they had made except when they closed (temporarily) and then the swelling would start making it even more painful until they drained it or it burst.
At the moment I do not know the way forward possibly another op, possibly they may heal, but I do have confidence in my surgeon I have who has personally taken care of me since the op.
The most soul destroying thing was I am allergic to penicillin and have reactions to a lot of antibiotics so to stop it weeping for any length of time I had to take anti biotic which in turn made me very sick and the painkillers I was using was co-codomol 30/500 and tramadol when things got really bad again making me feel very nauseous also.
Luckily I believe to get it to this extent is rare as I would not wish it on anyone! But I will keep my chin up and beat my two little "juniors" (my pet name for them now as they do not want to seem to leave me) yet!
Date: October 10, 2007
StoryHi everyone. My name is Karin. I guess we are all part of a club that no one in their right mind wants to be a member of. My story began when I was only 14. I felt like I had been shot from the inside out. I was so embarrassed! Why did I have discharge coming from my behind? I knew there had to be something terribly wrong.
Prior to the opening and drainage I was a very active person. Sports were my life. After it initially burst it would heal up and stay healed for months at a time. As time wnt on the flare ups became more frequent. I could no longer play sports and be as active as I wanted to be. In turn I laid around and put on weight.
Through the years I tried very hard to hide my problem.
I decided to finally have the surgery and stop hiding it in March of 2006. A week before the surgery I chickened out. I was too scared to do it.
A year later the real problems started. It would no longer flare up for one week out of the month. It was now only closed for one week out of the month. It would break open and cause me horrible pain. After a few months of this I began having a horrible pain around the area. It was so horrible I could hardly walk. Finally after a week of not knowing what was happening my girlfriend and I decided the best thing to do is go to the emergency room. The doctors said it was cellulitis. They gave me strong antibiotics and said it would clear up the problem. After a month of trying to clear up the cellulitis through antibiotics the goal was no where in sight. My doctor said the best thing for me was to have the surgery.
On 9/5/2007 after 10 years of pilonidal hell I had my surgery. My surgeon decided to close the wound with desolving stitches.
The first day was the easiest. There wasn't too much pain. I slept alot.The next day was very different. The pain was definitely there. About a week went by and we noticed a hole in the incision. Then it started to drain a bloody puss like liquid. We went back to the surgeon for the first follow up and to my dismay my surgeon said the incision had to now be opened up and packed 3 times a day. She didn't even numb me. She said it would not hurt to cut it open because the skin was not healed. This was true. The pain came when she began packing my wound. It was horrible.
Almost a month later now we are still packing it 3 times a day. The bottom of the incision where she cut into it had started to heal but seems to have stopped. In the last few days it has started draining a horrible smelling liquid. At the top of the incision there is a pin hole where a cheesy like substance has started oozing out of it. This can not be good. I have an appointment with my surgeon in a few days and I will post more after that.
If you have any suggestions or comments please reply to Kconley3@gmail.com
Thanks for reading my story.
Date: October 09, 2007
Storywell well,
there are more people with this problem than i realised,
my fiance is now past his 4th operation to get rid of his polionidal cyst, this has been an ongoing thing for 12 months now, and tomorrow he is going in "again" for an open surgery, where they are going to leave the exision WIDE opento heal from the bottom up, the past 4 surgery's he has has have ALL been closed, ido not reccomend it AT ALL. imagine for the past 12 months, constantly leaking, resorting to have to wear female pads, he has contracted golden staph in the site, also general staph, with closed surgery, it leaves a big void hole underneath, therefore, doesnt heal, i feel greatly for you all who have had to endure the annoyance, pain and total discomfort, as a carer for my partner i would NEVER wish this on ANYBODY....
so if anyone has some hints and tips to help us with our next milestone, it would be greatly appreciated,
good luck to you all out there with this, i hope your operation is 110% more successful than our last attempts
meika
meikaday@gmail.com
Date: October 09, 2007
StoryHello All!
Before I share my story, I wanted to respond to the 27 year old male with concerns because he didn't have insurance. I would first find out from your doctor if you can afford to wait 90 days. I would think the worst that would happen would be a flare up (I know, that is worse than worse!). Those usually cost me about 2-4 days of vacation/sick time. See if you can switch or work weekends to cover your time if you aren't privy to vacation/sick days yet. The other reason I would tell you to wait is that the surgery (to me) seemed expensive. I remember just my portion of the hospital bill was 8-900 dollars. And I remember being shocked at what the real cost was. I have Blue Cross Blue Shield and they really did save me a lot of money but beyond that bill you will also get a bill from the anestesiologist (sorry if I spelled wrong) and the pathologist and possibly from the actual surgeon him/herself.
The hospital kindly let me set up a payment plan. Lastly, if you have a significant other, or a mother (I'm 26 and I stayed with my mom after my surgery when I was 21) to help change the packings, that is a huge plus. I don't think I could have done it on my own. Not so much because of the pain but because you just can't see! Pain wise, I would gladly go through 10 more sugeries than another flare up.
You may have noticed that I am now 26 but had surgery 5 years ago so why am I writing now? Because (surprise, surprise) I had a flare up. At first I was totally in denial, then when I couldn't stand, lye down, sit-down, scratch my head, etc without pain I knew exactly what it was. It drained pretty quickly and I went to the doctor today to find out what my next course of action will be. His concern now is that it is a fistula (I'm still kinda confused on what this is..)because it is much lower than my first abcess and he sent me to a colon/rectum specialist. My appointment is on 10/16 so I will be sure to post after I find out what my next move is. To anyone who is getting it for the first time, don't be embarressed (especially if you are a girl! It is not hairy back disease!!) the more people I told, the more people I found who had it! To anyone concerned about the surgery, yes, I did have another flare up, but a few people that I know who didn't have the surgery have had more than 1 flare-ups in 2 years over a 6 year period versus my 1 in five years. I like my odds better. If anyone has any questions or just needs moral support, my name is Kristen and you can email me at keywest28@aol.com
Date: October 06, 2007
StoryHi there,
I'm a 21 yr old girl, and have recently found out that I too am one of the lucky ones. I had foot surgery and was stuck on the couch for a week or two, and once I was able to get up and move around, my tailbone was a little sore. We figured it was from being laid up, but within a few days it was unbearable and I started getting sick. I was away at college and took myself to the ER where they said it needed to be drained immediately (wouldnt even wait for my parents to get there). They gave me a shot of Demarhol and some locals, and I still cried through the entire thing, probably because the infection was so bad.If you think theres a problem, go to the doctor ASAP.Dont be embarassed and wait!The procedure took about 15 minutes, and was something I wouldnt want to go through again. The packing was removed the next day, and it drained for a few days,but felt much better soon after. That was about 3-4 weeks ago and for the most part I feel completely pain free. It gets a little sore after sitting for a while, but I make a conscious effort on how I sit. I was reffered by my regular Doctor to a surgeo, whom I saw yesterday.He looked at it and said I was completely healed from the lancing and it looked good. Said with no surgery, I had a 50% chance of it returning. With excision surgery and open healing, only a 5%, and that he doesnt do closed ones. I've decided to have it done, not wanting to have a lancing ever again. The plan is to do it in December when the semester ends, so hopefully it doesnt get infected before then. I'm not really worried about the surgery, but the weekly appointments after where he said he'll need to "clean it up." I was worried about the packing, but he said after I take out the initial one, it'll be ok if I can only push it in a little.Im nervous, but am trying not to let it get to me. Wish me luck, and I'll be sure to post. Email if any questions/comments... uwpsocr13@yahoo.com
Thanks for this website!
Date: October 03, 2007
StoryI had my first cyst 17 years ago when I was 8 months pregnant. At first I couldn't figure out how I bruised myself on my tailbone, didn't remember falling or anything else and attributed it to the baby sitting on my nerve. The pain went on for a few days until one night I couldn't take the pain any longer and my backside was so swollen I could not stand, sit and could barely lay down on one side to top that off I started to feel labor pains. I went to the emergency room and was in fetal distress because of the pain I was in. The next day a general surgeon examined me and told me I had a polinidal cyst and had to have it removed. Of course being in my 3rd trimester, I couldn't be put completely under, but into surgery I went, me and my big belly. The doctor did what he could to control the pain from the incision but I still felt some of it. After it was removed, I stayed in the hospital for 7 days to watch for infection. The pain from surgery and subsequent "packings" was so great I went into premature labor twice. After being released from the hospital, my incision healed very well, but did take nearly 3 months to completely close and heal. After going into labor a month later after the surgery, the anesthetis was concerned for infection during delivery. Luckily, after the nine pounder was born (via c-section) no infection developed. It was by far the worse pain -- even more so than labor -- I had experienced. Surgery was the only option and one I'm glad I chose.
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Date: September 28, 2007
StoryHi all,
I just wanted to offer a moment of support. My first experience with a pilonidal cyst was on a trip overseas. At first I chalked it up to a long plane ride, but as my fever passed 104
Fahrenheit I knew I need some medical assistance.
Here is my lesson.
The majority of people who post on the web are those who've had bad experiences. After years of major suffering I swore I would write of my 'success' story but have not yet to this day.
After years of dealing with abscesses, days/weeks of missed work, loads of embarrassment (and fibs to
cover-up), overseas surgery without anesthesia, just nightmare after nightmare I finally decided to go through with the removal surgery. Of course, I googled the success rate of surgery like crazy, and one lesson was learned - the majority of people who post are those who have had bad experiences. Like myself, it's been 3+ years post surgery and this is my first post, you get past it and then forget, a bit, about the agony. I remember constantly going to my surgeon and repeatedly denying his request to go through with surgery because of the horror stories I read online. Finally he 'forbid' me from going online. This was actually the best piece of advise I had in a long time. Prior to this all I could think of was the numerous fevers, trips to the ER where they didn't know what was wrong with me, soaking in the tub, and reading stories that the cyst can return even after surgery and that people enter wound treatment centers for months post surgery. All of this is true, no doubt. However, if you do have the opportunity - insurance in line and an understanding employer who will allow you to take the necessary time off to heal, it can be a
definite Godsend.
After perhaps 10 hospitalizations due to abscesses in about 3 years, I finally went through with the surgery to permantaly remove. My recover time was about 6.5 weeks. During which, absolutely no sitting, or working of any kind. I think this was key to my complete recovery. My work, which I told I had a 'back problem which required surgery', even after telling them that typical recovery time was 6-8 weeks was sure I'd be back in 4 days.
I had an injection during surgery which blocked pain for 24 hours - in fact I was never under complete
anesthesia, although it felt as I was.
I was out of the hospital the same day. After the 24 hour nerve block, I'm not going to lye, things got painful, but not more than your typical
abscess flair up.
I had a drainage tube inserted in the wound which required constant attention, but was much easier to care for then the usual insertion of feet worth of gauze. It's not a pleasant thing, but it's
definitely not the end of the world either. If you have a job which will support your time off and do not have a problem with being completely tied down to a bed or sofa for 6-8 weeks I highly recommend going through with the removal.
To be honest I almost miss the occasional "I'll be out of work for a few days cuz of a flair up" necessity, but in the end, lets face it absesses suck!
Hang in there. Find a surgeon who is familiar with the procedure, a hospital that is capable and go for it. 3+ years later and I hardly ever think of it, after years of absolute agony.
Hang in there. And don't feel forced to explain all to your boss/coworkers either. Just be very vague - rare back disorder requiring surgery - explanation will suffice. Beyond that, questioning by employeers in the U.S. is illeagal. I know it's not a pleasant thing, but just so you know, there are many of us who have passed through it and have recovered very successfully.
Best of luck in 'having this behind you'. :-)
Date: September 27, 2007
StoryI am one of the unlucky many that get these cyst on my bumm area. I have had about 4 to 5 in the last 7 years or so. I always wait until the last minute to go to the E.R. and get them to lance it open. When I finally go I am always in such horrific pain that nothing helps to kill the pain before they lance it. I have finally decided to go to my General Surgeon and have him remove it permanately. I am scared to death. I have reschedule surgery once b/c I am terrified of it. Not of the surgery itself but of the unknown effects of the anastecia. I have never had a surgery before so hopefuly everything goes well tomorrow. I will make sure to repost a message after I get out and recover for at least a week. I do know this though. These things only get worse and they come more often as time goes by. The only real way to get rid of them is to have them surgicaly removed. I know at this moment I don't have one that is infected but I know it is coming and I can't go thru having it cut again so here I go. Hopefully this will help someone with their decision on moving forward into surgery. I can't say it is right for everyone but I do belive it is the only way for me to get rid of it once and for all.
Date: September 27, 2007
StoryHi There!
Gosh..I am TOO one of the lucky ones to have these wonderful things! LOL
i have been dealing with this since my first cyst in 2003.
since then i have had 4 more pop up.
last week i started to feel one coming on-i always tend to get them in my groin area. like right close to the top of my inner thigh.)
so...of course, i was terrified to think i'd have to go threw this AGAIN. just thinking about the PAIn i had endured in the past-terrified me!
well this morning, i woke up to this thing being the size of a silver dollar-it's huge! i decided to take the day off work, and go into the doctors office. he did NOTHING for me!
he poked at it with a needle, and said he could'nt lance it, because he worried about infection. (isn't it already infected?)i had thought.
he poked at it, and a little blood and a tiny bit of puss came out-he told me to go home with the anti-biotics, and if it didnt go away, then i would need to go into the ER.
here's my problem, it's stll exactly the same! he did nothing for me!
i don't have any insurance and don't know where to turn to next?
anyone have any ideas???
please let me know!;)
hfaldet@sbcglobal.net
heather
Date: September 26, 2007
StoryHi,
Im 27 white male just got told by the doctor I have a pilonidal cyst. He lanced it, stuffed it with gauze and cover it with gauze and tape. He told me to come back in 2 days for him to take the old gauze packing and put new packing in and cover it back up. I have 2 questions. I see all this stuff about aftercare AFTER surgery but what about until I get surgery. I just started a job with insurance after leaving one without it and I cant afford the surgery for at least 90days. I cant afford to come back to the doctor allthe time and have cjange my packing? Any advice or expereinces would be helpful!
Date: September 24, 2007
StoryI had
pilonidal cyst for 2 years. I had to go through surgeries (4 times in total) from using dressings, wound packing, and using wound vac system (Worst of all!). In all the times, the doctors would leave my wound open and do the dressing changes. Anyways, being desperate I went to a doctor in San Diego (Worsey) and he did a great job. This time he removed the infected tissue using a procedure called Z-plasty. This time he closed the wound using a plastic surgeon. So far it is a year and the cyst is not back yet. Beofore each 3 or 4 months it was back. I am doing hair removal using laser now. I am happy and I thought to share my story so it may help more people. I hate those days with nonesense pain and tedious procedure to take care of the wound. My main experience is that research doctors as many of them may not be up to date. Good luck everyone.
Date: September 21, 2007
StoryI have more of a question then a story. I've been suffering with this pilonidal cyst for almost 9 years. I finally have the insurance to have it removed. I went on Tuesday, Sept 18 to have it removed and it ended up being an excision with primary closure. Everything has been going normal, swelling has slowly been going down and pain is there but manageable....until this morning. I woke up around 2 am to go to the bathroom and when i was geting up from the toliet, i noticed blood on the seat. I sat down again and all of a sudden waterfall of delouted (can't spell sorry) blood was all over, my pants, toliet, everything. I'm extremely nervous and I called my doctor and he said it was normal. Has anyone else gone through this?????????? If so,,,,HELP!!!!!!!!! I'm still spazzing out!!!!!!! Thank you!
Email is Beccaboo22485@Aim.com.
Date: September 16, 2007
StoryHello, I thought I would share my story with y'all. I first experienced my pilonidal cyst in 1996, I had fallen on the ice and thought I had bruised my tailbone, or worse broke it..well, not the case, one morning I couldn't move, even lying down was painful. I was living in a town of 3000, so I went to the local doctor and he informed me that I had the pilonidal cyst and gave me a antibiotic and told me to take sitz baths and it will be okay. At the time the track had the circumference of a pencil eraser and was only about 1" deep. I decided not to do anything after that episode. My tush did get sore on occasion, but nothing really bad. After about 3 years, I started having episodes more and more often. I went to a general surgeon in the town I lived in and he said the best thing would be to have it removed. He was going to do the closed wound procedure and it had an 80% chance of healing correctly. Well after three weeks of pain and healing, I finally got to return to work.
Unfortunately the surgery failed and I started bleeding at work. I went to the nurse on staff and she called my surgeon immediately. He said to come up right away. I then got to have all the sutures removed from all the layers. I was left with an open wound that I had to have packed daily for 18 months. During that time, I had to have another minor procedure done to clear out some of the dead tissue that had collected. I didn't take a normal shower for that time. The nurse at work did my dressing changes as I am single and wanted to see what the dressing looked like everyday. When it did finally "heal" it was a straigt line scar on the midline, so naturally around the time of my period it would open up and start bleeding. So for the next 8 years I dealt with it opening up and bleeding. It was embarrasing, there was no way I would get intimate with anyone when it was bleeding, which seemed like all the time. I also stopped doing any type of baths or swimming...showers only. I did find this website about 7 months ago. While reading through the site, I was surprised that I wasn't alone with my problem and learned that a Colon and Rectal surgeon had new techniques to correct previous surgeries. After meeting with the surgeon, he mentioned he had only done two of these surgeries, but that they were successes. The procedure he suggested to do was the Z-plasty. After what I was dealing with I had confidence in this surgeon that he would not do me wrong. I had the surgery in April 2007 and was out of work for 3 1/2 weeks, they thought I would need to be out for 6 weeks.
It was great, very little pain after returning home, I had to spend the night in the hospital. A home care nurse came daily to change my dressing and check my drains. I did have to wear a girdle type bandage during recovery, but since I didn't have to leave my house, not a big deal. I have not had any issues since, and was discharged from the doctors care well before he planned because I had healed so well. I really want to share my story because if you find the right surgeon that can make a difference. Also, don't give up! I was nervous, because I am on my own, but since I shared my story with the nurse at work along with some other close co-workers, I had a support system in place should something go wrong. Best wishes to everyone who is going through this or been through this!!!
Date: September 14, 2007
StoryHello I am a 28 year old male in the military who has had both a polonidal cyst and most recently a polonidal sinus. My cyst reared it's ugly head while I was on a patrol in Afghanistan. If you can imagine having a very painful sensation at the base of your spine while offroading in Sierra Nevada, that is how I felt. My medics lanced it and packed it with gauze and I didn't have any other problems until the summer of '06. I noticed a growth which my doctor call a "protective cap" over my brand new polonidal sinus. I chose to live with it which was a BAD IDEA...VERY VERY BAD IDEA!!!!!
On the 24th of August I had the sinus and all surrounding tissue removed by my General surgeon. The wound was approx 5 1/2cm long, 2cm wide and 4cm deep. You could actually see my tail bone. After surgery I stayed in the hospital for 8 days, 4 with a Wound V.A.C. attached to me. I was prescribed percocet (Oxycodone) and took it 4 times daily. Since I was discharged my wife has been changing my packing as per my doctors orders. 4 times DAILY (6AM, noon, 6PM and Midnight). At every change I have to shower and spray out the wound with hot water, 2 of those times I acutally soap up and shower normally. After my shower I have my wife dry the wound with a piece of 2x2 gauze and that gets any residual Exudate (greenish goo) out. I use House breaking pads for puppies to set my materials on because essentially it is a sterile pad. I use a Cotton tipped applicator to pack the gauze. What really helps is my unit gave me 21 days of convalescent leave. I don't know if civilian bosses allow that but it helps. The more I change my bandage the better I feel. It seems like it is helping me heal twice as fast, it's only been 3 weeks since my surgery and my wound is only 2 3/4cm deep now and it takes 2 1/2 2x2's to pack (it used to take 5 2x2's to pack). I do not have pain, bridging or infections. I was going through so many emotions with that cyst/sinus: anger, sadness, frustration and most of all EMBARRASSMENT. Now I am relieved that it is gone, even if it does come back some day, it's not here now.
Date: September 13, 2007
StoryI am a 20 year old female and I have had 3 cysts in 4 years. I got my first cyst when I was 15 years old. I didn't know what it was at first, so I didn't do anything about it for a while, because it was embarrassing. Well finally it got to the point where I couldn't deal with it anymore so I went to my doctor. She told me what it was and she said that I had to have surgery to have to removed. I was a little scared about it but I went through it. About a month after I turned 16 I had my first surgery. They had me as an outpatient, so I went home the same day as the surgery. I had some complications with the anesthesia and the first packing change was horrible so I had to go to the doctors office to have them change it the next couple of times. Well, that one took about a month to heal up.
Almost exactly a year later I began to have swelling there again and pain and I thought Oh God...so I went to the doctor and of course, it had returned. I immediately began shaking remembering the pain that I went through the first time. This time they kept me over night. The wound was a little bit bigger of course and it took about a month and a half to heal. My 3rd one popped up about a month ago now. I thought it was just swelling because of the weather but it got bigger and bigger and finally it popped, oozing out nasty puss. I went back to my doctor and she referred me back to the surgeon the same day. This time I had a different surgeon and he scheduled me for surgery two days later. I went through it AGAIN and I stayed over night. I got sick from the anesthesia again and I was in a lot of pain this time. I believe that my wound this time is 10cm by 8 cm by 6cm deep. Its HUGE! This time they told me to use a Wound Vac. Boy, I thought packing was bad, Wound Vacs are HELL for these kinds of wounds. I wont lie, they are awful! They are painful, and a pain to carry around! I've been having a home health nurse come and change it Mon, Wed, Fri, but the surgeons office said that my insurance wont pay for that anymore, so I can either go to an outpatient clinic every other day that is halfway across town to get it changed (which, I would have to leave work early every day that I have it done, which I cant do for fear of being fired)or I can pack it (which I wouldn't mind doing at this point after experiencing the Vac) but they said it may take around 4 months to heal. So that has been my experience with it. They said that I have about a 25 % chance of it coming back. They said that it is due to my weight. So, I am trying to start losing weight. I pray to God that it doesn't come back, because if it does, I am NOT having surgery again. My "crack" will always be deformed from this now and I am never having it done again. I pray for all of us out there who have to suffer from this Horrible, Sick joke that nature has played on us.
Date: September 10, 2007
StoryI am a 51 year old female. I had my first cyst in 1985 - 22 years ago - and I am still having them! I went quite a long time without a flare up then a few years ago it started back with a vengence. I go tomorrow to have excision surgery. After reading some of these stories I am not sure it is the right thing to do. I thought once I had the surgery it would be the end of the cysts.....I am terrified! It seems as if each flare up gets a little worse. I am not even sure I have a good surgeon - its who my primary care doc sent me too. Will post again after the surgery.
Date: September 08, 2007
StoryHi. I am a 30 year old white female and I suffer with pilonidal cysts. Mine only started about 2 years ago the day before Thanksgiving. Like most of you I felt this pain at the bottom of my spine or more rather the top of my (sorry no other word for it) my crack. I was in the shower and the water hitting it was hurting and so I felt back there and I felt this large swollen tender warm area. Well I am a nurse and I thougt it was just a cyst. So I always have antibotics lying around and it was the holidays and I was going out of town so I started taking some. When I got back to work the following week, I couldn't even sit down. One of my doctors looked at it and told me it was a pilonidal cyst. She tried to lance it but couldn't get anything out. So 2 days alter I went to see my now surgeon(we are very close at this point). He lanced and told me I probably wouldn't have another flareup for years if ever. Well he was wrong, I now have had it lanced 5 times.
In feb. of this year I broke down and had the major surgery. I thought Thank God all this is over. I was off work 2 weeks and still had some pain over the next few weeks but finally I was back to normal. Well on July 18th I had that horrible feeling in the base of my spine. I got my husband to look at it and he said it was more than likly the cyst again. I made an appointment for 2 days later, well bytime it came around I was running fever, hurting all ove and had a high white count. I had never had these before with the cysts. I went to the appointment and thought he would just lance it and I would be back to work on Monday. He walked in and looked at it and told me I was goin to surgery again. I cried.
Anyway, I went for my followup on the following Monday, He wanted to put a wound VAC on the wound. I said ok, I didn't know much about wound VACS. Well I had one put on mby home health care. Mu best friend also a nurse didn't think this was the way to go, but I did it anyway. One week later I was reinfected and very sick. I was in the hosptial for one week with 4 different anitboctis going into, still on the wound VAC,I had MRSA. Well a week went by the wound vac came off and the home health nurse wasn't sure she got all of the sponge otu. I went back to the surgeon and he poked and thought he was pretty sure he got it all out. Then we started packing. I finally went back to work and we were still packing the wound. It was very small on the outside but still very deep on the inside. The surgeon wanted to get the inside to heal up first because he thought this is what caused the infection that lead to my second surgery. Well the outside closed up almost all the way and the packing broke off inside. We went back to the doctor he cut it open just a bit to get the packing out and more packing in. I was to follow up on Monday.
Sunday I started running fever, being a nurse I know I was supposed to tell the doctor, but I was afraid he would say hospital or surgery, so I wasn't going to say anything (this is really dumb so please don't do this) anyway he was looking at the wound and He asked if I had been running fever, I asked why, he took my hand and made me feel why. I had another
abscess, so back to surgery I went. This was last Tuesday. It was by far the worst surgery afterwards. Pian anyway. The sponge silver dollar size was stoll in there and he removed it. he put in three sitches and a pin rose drain. It came out on monday and the stiches hopefully this coming week. Still have pain and fever on and off and hopefully no more surgery. i know all of this sounds scary and it has been, but hopefully this is just a freak thing and I wish all of you the best and I will keep youn up to date
Date: September 06, 2007
Story
My Experience with this Disease
Well let me first of start with saying that I am a female! So
when the realization of what I was dealing with was “a male thing” I
was so embarrassed. But thanks to this website, I found out that I
certainly wasn’t the only one and that had this issue and that I
should not be embarrassed.
Well, my first encounter with my cyst was last year in June 2006.
I woke up one morning from a great night of dancing and drinking
finding that my tailbone had started to hurt. I felt a little bump
as I moved around, sat down. I figured I had just probably fallen
and bruised it. So I was careful how I sat, expecting it to go away
in a few days. It didn’t, in fact it started to really hurt, walking
was difficult and sitting upright was not an option. Even lying down
it throbbed. So, still thinking it was a bruise I put an ice pack on
(not a good idea I know now). This made my pain more intense. I
started to think maybe I had broken my tailbone or something, so
when I started to run a fever I went to the near by walk-in clinic.
Every movement was painful.
As I entered the walk-in clinic, hobbling and wincing from the intense pain and running a fever, I was desperate to know what was wrong with me. I had just started dating this wonderful man (now my husband!) and he took me to the clinic. I was so embarrassed of course, I didn’t let him come back with me. Anyway the doctor informed me that I had a
pilonidel cyst and that he would have to lance it under local anesthesia. I was horrified! He then told me he would have to pack it with gauze and I would have to come back everyday to have it repacked! I started to cry even before I went back. He gave me a shot of local anesthesia, which because of how much swelling there was because of how long I waited DIDN’T WORK) and lanced it. Let me tell you, it was horrible. I was screaming, sweating and gripping the poor bed like I was dying. I felt him scrap, cut and drain my poor cyst.
Afterwards, the doctor told me he had removed about ¾ of a cup of
pus and drainage. He packed it, which was almost as painful and sent
me home. I walked out of the clinic with my boyfriend, tears running
down my face. He told me later in the car that he could hear my
screaming.
Everyday for about a week and a half I returned to have it
packed. Each time I had to learn how to deal with the pain. I became
very good at it, well I think now. Finally the doctor told me I was
good to go. He also informed me that the odd of it coming back were
about 40%. I figured I’d be the luck 60% and not have it come back.
Boy was I wrong, In November 2006 (only about 6 months later) It
started to swell again. I had just found out I was pregnant, so we
were very happy and this news kind of helped me keep a happy mind
when my cyst came back. So after I felt it swelling and knew it
wasn’t going to go back down I went to the clinic again. I visited
with a different doctor and she suggested we could try antibiotics
(prenatal safe) to see if that would get it to go down. I was
excided to find out there was an alternative. She sent me home with
them and asked me to come back tomorrow to have it lanced if the
swelling didn’t go down. Unfortunate for me, I was back in after a
painful night. She gave me local anesthesia again, which actually
worked, and lanced and drained it. It was a much better experience,
still painful but I didn’t scream or cry. I had it packed again for
about a week after too. The doctor also told me that since this was
my second time, it would probably happen again until I got surgery.
Since I was pregnant at the time, I figured id wait until after I
gave birth.
But boy oh boy did I take precautions so as not to aggravate it. I actually bought a round cushion with a hole in the bottom (not the inflatable ones) which worked for me. I bought it at RiteAide
and just folded it up somewhat so that the hole was always over my
tailbone. It was totally worth it, I didn’t get another flare up
until after my daughter was born in September.
It started to flare up so I went to the ER right away and they told me they couldn’t lance it that it was too small and too early (see I learned not to wait!) so they gave me antibiotics. This time they actually worked! I scheduled an appointment to see a colon and rectal surgeon to get this whole thing done and over with once and for all. I went in to see him and he was very nice. He had done many of these surgeries before and scheduled me for the very next morning. He told me that I would be put under general anasethia,
because it was the most ‘humane’ thing to do and that I would be
asleep the entire time. So there I went, I don’t remember a thing,
not even twinge of pain from the whole operation. The most painful
thing was having my blood drawn and my IV put in. Which were not bad
at all!
I can't believe how much less painful it has been to just have it
removed! I am at my first day at home, on good pain medications and
doing fine! Things are looking great. Just wanted to share my story
to everyone and to tell them not to be embarrassed or scared to get
it operated on. If it needs to be done, do it. Don’t wait. That’s
when you find it will hurt more and take more time to heal. Good
luck if your reading this, and your not alone.
Josefina from Washington
Date: September 05, 2007
StoryJust thought I would throw my story into the rest here. 25 year old male, first experience was in April 2003, had no idea what it was at the time, got bigger, till i got it lanced and took Amoxicillin or Doxycycline or Keflex or something, I forget which one I've had so many. For the most part stayed dormant till 2006 it came back with a vengeage, first time I've ever screamed the F word in a doctor's office was when i had this one lanced. Then had the other side of it lanced a few days later and packed with gauze. Probably the most painful experience of my life, beating out breaking my shoulder and most of my toes was removing the packing myself a week later. Anyway it never really healed so I opted for the surgery. In Januray 2007 I had sinus excision with closed healing, and had the stitches taken out over several weeks. I went back to my landscaping job in the southern heat and surprisingly has little to no issues with it, with a terrible diet and smoking over a pack a day at that. Was fun while it lasted. In June it started leaking again without really hurting. Went back to the surgeon, who professed ignorance as to why it wasn't healing right. Went to a wound care center about 2 weeks ago and was immediately told "we can't do anything for you, go back to your surgeon." So i'm going back in two days to see what lovely commentary i get this time. I just took Amoxil for 10 days with zero effect and the pain is getting worse by the day. Every few days it cracks from sitting down and bleeds profusely, but is constantly leaking otherwise. I'm thinking of trying the Dakin's soultion i read about much lower down on this page. Yeah...
Date: September 04, 2007
StoryHi! I'm a 26 year old male. I recently had my 1st experience with Pilonidal Cyst/Sinus/Abcess (I've had doctors and nurses call it all of the above).
About 5 weeks ago I noticed what I initially thought was a pimple just above my butt crack (pardon my french). I didn't really think too much about it at the time. It was the 1st time I had had anything of the sort growing in that spot, and just dismissed it as an unfortunately placed pimple. Roughly 4 days later it was obvious that this wasn't a pimple as it had grown quite considerably and naturally I thought "Well, maybe it's an unfortunately placed boil." And by this stage it was starting to get quite painful.
I then 'googled' 'boil treatment' to try and find a way to relieve some of the pain and pressure it was causing. It was then that I stumbled across a site that was quite in depth and it was here that I first ever heard of Pilonidal Cysts. Doing more research I came across this site and had a read of others experiences. It slightly freaked me out, and I dismissed it (once again) thinking of myself as a hypocondriac, haha.
By the next day (this is a Saturday), I decided that just for peace of mind I would go to see my doctor so she could confirm it was only a really bad pimple or something. Then while in the shower (making sure I was 100% clean if anyone was to take a look down there) the cyst ruptured and it was a horrible mess. Blood and fluids running down my legs. My partner swiftly took me to the doctors office and once there, yes, the doc confirmed it was indeed a Pilonidal Cyst. My heart sank at this point and I was pretty much crying (on the inside of course!). She immediately called the hospital and told me to go home, pack a bag, and that I must go to hospital straight after that to have emergency surgery. It was all happening so fast! I got to the hospital at roughly 11am and went straight into one of the wards. After much contemplation and anticipation, at 9pm I was finally called in to have my surgery.
At 1am I finally awoke, shivering and sweating, as so many do after surgery, in a rather large room that I had to myself. All the curtains in the room were open and the lights were on (My room was facing directly into another building and I was fully naked). Without thinking, I jumped out of my bed and closed the curtains, all while still having some tubes up my nose and a drip in my arm. When I turned to get back in bed, the sheets were so unbelievably disgusting - there was blood EVERYWHERE. I called for a nurse to please change the sheets so I could get back in again. The rest of the night/morning was a very disturbed sleep. Waking every 20 minutes or so. Not to mention my incoherentness due to morphine, etc. I eventually spent only 2 days in hospital before being discharged home. My doctor wasn't the friendliest guy there, and would barely talk to or acknowledge me when I asked him questions.
Thankfully, I had already been thru this site and was somewhat clued up already.
It's been 4-odd weeks since the surgery. I still have nurses visiting me daily to change my bandages and repack the wound (I have an open one). As far as I'm told, it's healing very very well, and tho I still get uncomfortable from sitting for extended periods, I am pleased with how it has progressed thus far.
It has been an unfortunate year for me health wise. I was diagnosed earlier in the year with another disease that I pray will not be on-going, and I also pray that this will also be an isolated event and I do not have any more flare ups ever again. It is only early days afterall...
And also at this point, I would like to extend my thanks to those who are responsible for this website. It has been an inspiration and made me feel not so alone with what I have been thru. Noone I know has ever heard of or known anyone that has had one before. And for this site I am grateful.
My sincerest regards, Matt.
Date: September 04, 2007
StoryHi there! I am a 23 year old female and I too have a pilonidal cyst! Hooray! Okay well not really something to rejoice about, but it makes me feel better to know that Im not the only one suffering out there.
About a year ago I noticed it...i bump at the top of my crack! What the...? Then it started to to hurt and damn did it hurt. It got bigger and bigger and it hurt so freakin bad! I am stubborn as hell and have a terrible phobie of doctors, needles, and so on so I didn't have it looked at for about two weeks. By that time I couldnt sit, could hardly walk and was convinced I was dying. Haha! I finally went to the hospital and they took one look at it and told me to go to a surgeon and have that thing lanced. I was terrified to say the least but I was glad that I finally got some pain killers and anti biotics to give me some releif.
I went to the surgeon(really really didnt want to tho) and i gave him a hell of a time. He told me his 3 year old son acted better than I did in the doctors office. I screamed and cried and kicked around like a little woosie...but i managed to get in lanced and drained and it was so nasty! But it honestly felt better afterwards. So a year goes by with only minor discomfort down there every so often. Then BAM! The dreaded crackmonster kicks it up a notch...it comes back with a vengance. I had a fever, was feeling nauseous (I suppose due to the infection racing through my body) and it hurt even more than the first time it happened. I got drugs drugs and more drugs and just hoped it would go away. But nooo...I went back to the doctor( a different one this time) and once again had it lanced. The fun part was this time they gave me valium so i didnt flip out so bad during the procedure. I still was pretty upset and screaming obscenities at them but i got through it once again.
This time I am having the surgery. I am so completely scared but I cant live with this thing any longer. Its embarrassing and painful and I have to face my fears. The surgery is this Thursday and its all I can think about. I read a lot of other peoples stories saying that after surgery it hurts and it doesnt heal for a long time..I hope I am luckier. Most likely not but one can dream right? Wish me luck guys..if anyone has any advice to offer or similar stories to share give me a holler at Myserenity13@aol.com or just post a reply on this board.
thanks guys :)
Date: September 03, 2007
StoryI have been dealing with this since 1992 when I fell down and thought that I broke or bruised my tailbone. I've had 2 lancings , 4 surgeries and 1 re-scraping/de-breding of the area. My last big surgery was in 1998 and it took 2 years before it finally healed and stayed closed. I haven't had any issues with it the past few years and I really thought that it was finally healed, but just a month or so ago I noticed 2 sinsus openings. So....I'm heading in on Friday for the flap surgery. I'm a little nervous about this surgery and the whole thought of dealing with this again is disappointing. I'm 35 now and read several places that it rarely comes back after age 40. So, that's giving me something to look forward to about turning 40 in a few years!
This site is wonderful. I've gotten more information from it than most other sources I've found - including doctors!!
Best of luck to everyone out there dealing with this.
Date: September 02, 2007
StoryAfter reading a few of these posts, i felt i should add my own. I had my pilonidal sinus removed in november 2006, and surprise surprise it isnt quite healed yet....though slowly but surely its still goin..im off to university in 3 weeks so very much doubt it will be healed by then. The odd thing is, it has never been painful for me, ok so maybe the odd twinge but thats about it?! and its still weeping a bit.i just dont understand why this final stage seems to be taking soooo long! and yes for all the ladies- we all know it does make things slightly awkward when it comes to those intimate times! i know that compared to others my problem is not huge, but if anyone does know of anything that may speed it up i would much appreciate it. I refuse to go let another team of male surgeons go poking about as its rather degrading to say the least!for those contemplating surgery, just go for it as apparently it wont heal on ots own properly till your about 40! and general anaesthetics are nothing to worry about, so happy days all round! |
