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Date: August 31, 2007
StoryHello all. I posted before. I had my surgery in the end of May. It is now the last day of August, and my wound is still open and draining somewhat. I recently moved in as a freshman at my college, and I wet t their health-center for them to evaluate my wound. They took me right away and looked at it and my doctor's plan of care. They completely rewrote my surgeon's POC and came up with their own. It has healed more in 2 weeks than it had in 3 months.
Date: August 30, 2007
StoryHI EVERYONE, I HAVE HAD THESE CYSTS FOR ABOUT 5 YRS THEY COME AND GO, BUT I WISH THEY WOULD NEVER COME BACK. I WAS READING A POST ABOUT THESE CYSTS AND HIGH BLOOD SUGAR THAT REALLY CAUGHT MY ATTENTION, AND I HAVE A DOCTOR'S APPT IN SEPTEMBER AND I PLAN TO BRING THIS TO MY MD'S ATTENTION. MY BLOOD SUGAR HAS BEEN UP RECENTLY AND THIS WILL LET MY MD KNOW THAT I NEED TO HAVE MY BLOOD SUGAR TESTED. I ALWAYS THOUGHT THAT THESE CYSTS HAD SOMETHING TO DO WITH HYGEINE, EVEN THOUGH I AM A BATH AND SHOWER JUNKIE; IT IS GOOD TO KNOW THAT I AM NOT ALONE.
Date: August 26, 2007
StoryHi all, I first noticed the pain from my pilonidal cyst when I went to watch the British formula 1 Grand Prix last year. I had been sitting for ages and noticed a
pressure at the base of my spine. I went to the doctors and the district nurse drained the cyst. After seeing a specialist we decided to put off having the surgery as I had an important year of my GCSE's ahead. The cyst became infected on 4 occasions over the next year.
Having met with the specialist again I had the surgery done on the 1st August 2007. It turned out to be quite a big cyst and so I ended up with a hole measuring 7 cm deep, 12 cm long and 3 cm wide in my bum crack. As bad as this may sound I have actualy experienced very little if any pain at all. At the hospital they put me on a KCI V.A.C pump which speeds up the healing process. From the original dimensions of the wound it is now down to 1 cm deep 10 cm long and 1 cm wide in just over 3 weeks. The only painful experience has been during the dressing changes.
I strongly recommend to anyone with a pilonidal cyst to go and have the surgery done right away. I was so scared before the surgery but now 3 weeks after, I am over the moon that i had it done.
Date: August 24, 2007
StoryOh my gosh. I have read a lot of the stories here and I feel so fortunate. My first experience with this was when I was 14 and I had been getting "beautiful" for school as it was about to start and spent the day at the salon. The pain was terrible and I had no idea what it was so I went to my chiropractor. I rode horses a lot. He sent me to a Dr. and they lanced the area. About 2 weeks later it came roaring back and I had it surgically removed. I had never felt such excruciating pain, nor since. I have not had a flar-up since then, some 23 years ago. But I have lived with chronic pain on my tailbone from scar tissue. I can't sit in most movie theaters because they tend to slightly recline and if I slouch in any chair it hurts. I try to sit slightly forward to keep most of my weight off my tailbone. But I really had no idea that it was such an ugly, chronic problem for people. My eyes are open!
Date: August 21, 2007
StoryUgh...I can't believe it. I got my surgery back in '03 and here I am, 2007, 22yrs old and it has come back. Fortunately I know what it is this time so I can start treating it a bit before I have the surgery (to avoid infection). Doctor said that, if I wanted, I could get some laser hair removal around that area (as I have a harrier than average rear). We'll see, if it means not dealing with these, that'd be nice. Pilonidal cysts are bastards. My advice to the first timer...go to your local doctor and if it isn't too bad they can drain it (which will hurt less if it isn't infected). If you have more problems, or it is really bad, go get the surgery.
Date: August 21, 2007
StoryHi, I'm a 20 year old male college student in Virginia and I've had two surgeries so far to remove pilondial cysts, and in 2 hours I'm going in for a third surgery. My first surgery was in '04, second surgery was in May of this year ('07), and my third (and God willing, final) surgery, is today August 21, 2007. It's been an ongoing painful experience and back in May, the surgeon took out such a large amount of "flesh", I was certain it would never plague me again. Here we are barely 3 months later, and I've already got another cyst (if not numerous cysts). I'll repost in a few days and let you know how it went. Say a prayer...
Date: August 21, 2007
StoryHi, I'm a 20 year old male college student in Virginia and I've had two surgeries so far to remove pilondial cysts, and in 2 hours I'm going in for a third surgery. My first surgery was in '04, second surgery was in May of this year ('07), and my third (and God willing, final) surgery, is today August 21, 2007. It's been an ongoing painful experience and back in May, the surgeon took out such a large amount of "flesh", I was certain it would never plague me again. Here we are barely 3 months later, and I've already got another cyst (if not numerous cysts). I'll repost in a few days and let you know how it went. Say a prayer...
Date: August 17, 2007
StorySteve (Malta)
Treatment for packing open wounds, you have to try "Sorbalgon" its a calcium alginate packing/dressing which has come to my aid in "filling that hole", nurses and docs telling me 3 months from June 28th date of my operation. Aug 17th and closed completely. I had a 7 cm deep and 12-14cm length triple pilonidal. Don't know if its available over in the US though. Made by Hartmann in Germany. Aquacell GA is also an option but very $$$$.
safetypro@gmail.com
Date: August 16, 2007
StoryHello ya'll,
My name is Nicholas and I just had my pilonidal cyst excised last Monday, August 13, 2007. Pain is pain, but my stubborn Irish a$$ is dealing with it. Anyhow, I had the cyst removed and that sucker was huge, pretty long. The pain meds that I am on tend to constipate, so if you take the codeine, you better add you some stool softener, fiber and eat plenty of fruits and or veggies then drink plenty of the H20. My surgeon chose a closed wound w/ stitches instaed of an open wound and I should be getting those stitches out next Thursday.
I guess my story with this disease can be traced back to the 7th grade, my days at middle school and now I am 28 and in grad school. I have always noticed a hard lump at the end of my tail bone, but I thought that it was just extra bone and ignored it; especially when I involved myself in physical activities (sports, sit - ups, weightlifting, whatever). This thing has been growing ever since man and it was disgusting. I am glad it was excised and believe me, it may hurt more than a drainage, but have that doctor cut it out with the roots because you know you do not want that coming back.
If you have any questions, hit me up: nickfinn@hotmail.com.
Date: August 14, 2007
StoryHello all.
About two years ago, I had my own personal experience with pilonidal cyst. It nearly killed me because the levels of infection were huge and it "tracked out" killing a lot of tissue. I couldn't sit for two months after having two surgeries to set things right.
This website has been very helpful for me. However, the one thing that bothers me is how everyone talks about their condition, but there isn't much on potential causes and simple remedies that can reduce people suffering from this cyst.
FIRST--I need to clear up a myth. This cyst is NOT caused by hair of any sort. They are caused by one thing only--bacteria. The bacteria gets into a natural pore in the skin and/or a "pocket" or "sinus" in the cleft area. Normally, this bacteria is there all the time, and isn't a problem. There is growing evidence that most cyst flare-ups are caused by high blood sugars and lowered immune response. SUGGESTION TO ALL--get your blood sugar levels checked. We have a national epidemic of Type 2 Diabetes out there.
My blood sugar levels were 380 when my cyst "exploded".
SECOND--I have a simple home-made remedy to help with the bacterial flare-ups (aka--cyst). Nurses often use a solution called "Dakins Solution" both topically and in open wounds to get rid of bacterial flare-ups. You cannot find Dakins on the market, but you can make your own. Take .3 ounce of regular bleach (one capful) to 16 ounces of regular tap-water. Mix this up and keep in a 16 ounce plastic bottle. After you make the solution, put some on a gauze pad, soak it GOOD, and put it over the cyst area (even if it hasn't broken through the skin yet). It works even better on open cysts--it is okay to use on open wounds, but for no more than 3 days in a row. Do this for several days. The homemade Dakins will begin to reduce the swelling and pain quite fast.
Don't do this as a replacement for seeing your doctor. However, doctors really don't have anything that works as well as Dakins--antibiotics are good, but they don't work well on cysts. My advice--make some Dakins and keep it around all the time. It works BETTER than anything out there hands down.
THIRD--if you need surgery, get it. Don't wait, and CHECK YOUR BLOOD SUGAR LEVELS.
This is a great website, but I would like to hear more stories about stuff that helps rather than going on about how bad the suffering was. All of us have suffered with this, but what we really need more of is practical advice on things that help.
Feel free to contact me if anyone has questions or would like to learn more.
Hugh in Atlanta
sdia@bellsouth.net
Date: August 14, 2007
Story23 year old female who has flareups mostly at that time of the month...
I've put up with it for 3 years now (I've only had an "agony" flare up once, and the other times just took antibiotics)
I finally decided to try surgery, and everything was planned for me one summer holiday. Showed up, and the anaesthetist didn't arrive, so the surgery was cancelled and rescheduled to a time when I had school again. Haven't been back since
I think this site is the best thing ever created (haha) and I will be following more of the advice to get some relief and maybe put an end to it (try surgery again perhaps...)
Date: August 13, 2007
StorySuccess can take a bit of time. That is the message from my experience. I fell on my tailbone in the fall of 1971. The next day I had a swollen and horribly painful lump two inches long and an inch wide in my ditch and it was growing by the hour. I was in college and the nurse at the school took one look at it and sent me to a Dr. in the city. He looked at it and decided to lance it. It was the most painful experience in my 55 years thus far. I remember the nurse actually screamed louder than I did when the Dr sliced it open. Fortunatley it was alfter the office had closed at night. It healed and all was fine for a year. Then it happened again. My Dr diagnosed it as a pilo cyst and I was sent to the pilo specialist in Portland, Oregon. He had done more than 500 pilo operations. He was "the guy" according to my Dr. He did a closed surgery. But he did not get all of the infection. It built up underneath the scar tissue. So he had to go back in and reopen the wound and let it heal from the inside. It took a year but it did heal. For the next thirty-five years I tried to "live with it." I led a physical lifestyle in every sense of the word form European travel, to mountain climbing, backpacking, competitive golf, politics, you name it. And it would get sore and drain and then disappear for years.
Last year it came back and did not leave. The draining was increasing, the pain sitting was just too much. I decided to have another procedure done. But what procedure? My family Dr suggested I see Dr Tom and Dr John Bascom. After all, he had known the Bascoms for more than thirty years and was aware that John had perfected a new technique. As we all lived in the same town it was convenient. John and Tom looked at me and said I was the perfect candidate for the cleft/closure or cleft lift procedure. It was done the first week of March 2007. From my view it was the perfect procedure for me. The pain before and after the surgery was almost non-existent. I needed zero pain medication. I recovered on the couch or bed and was up and around in a few days. The fears of surgery were completely unjustified for this operation. I healed quickly and within sixty days I was fully active. I have experienced zero drainage, zero discomfort and I am doing all the things I avoided as I tried to "live with it." My experience shows you can be cured and the cure does not need to be painful or keep you down recovering for a long period of time. My message is to get your pilo infection out of your body ASAP. Study the methods available and select the one that is best for you in consultation with the best pilo Dr you can find. Life is short and there is no need to have an infection in your body and any more holes in your body than you were originally designed to have.
Date: August 12, 2007
StoryHello All
I had my first major flare up last week,The first thing I asked my wife for the day after going to the doctor was a painkiller and an antibiotic (prescribed by the doc)
Iv had the condition for the last couple of years with very minor flare-ups,squeeze,pop, gone the next day
After reading quite a few stories I haven't see anyone mention any thing about a perianal abscess
I have had both flare up at once,mainly the perianal abscess(2 operations later its looking like we have beaten it)
I thought the perianal op was bad but its not looking too good for the bum crack job either
OH the doc said it was a boil....I WISH (not my regular doc)
Am looking forward to hearing more good stories than bad ones about this cruel affliction
Good luck
Date: August 12, 2007
StoryHistory:
I had problems with pilonidle sinus for more than 2 years. First I had
piles around September 2004 and piles were injected and next day of piles (December 2004), all of sudden I had lump near tailbone and it was
draining very badly (pus was coming out of it) and it was really
painful. I was on newly started job, so I could not ask for leave and I
did not go to doctor for about 5 days and I went to doctor on Saturday and doctor sent me to hospital in ambulance in emergency and over-night, the abscess was drained out and I was discharged from hospital on Sunday. The mistake I did that I continued working from Monday. I use to go to nurse every day for packing. From 23rd December the clinic was closed and nurse said its almost healed but not 100% and you can put packing yourself for one or two days. Well the conclusion is it was not healed properly and it re-occurred after about four months.
So in about April 2005, it starting draining a little bit but not much
pain. I went to doctor and doctor gave me anti-biotic. It stopped
draining for sometime but it started again. I went to doctor again and
got anti-biotic again. So it was draining on/off for about 1 and half
month. And the infected area was increasing day by day. And around end of month May, doctor said you need operation and he can send me for operation in emergency. I was scared for asking leave from work and packing every day. So I denied for operation.
Then I booked my annual leave and I went to Pakistan and I had operation (with open healing) but in this process I delayed operation for about 1.5 months (end of May 2005 to mid of July 2005). Which I regret too much because wound would have been small. Now I feel very angry on myself that I could not take care of my health and I continued working with puss and little bite of bleeding. I was feeling really weak during those days. My Immune System was really down. I am not able to forget those days and I feel that I misused my youth. And I think it might have destroyed my other parts like nervous system, hip bones etc.
Well story don't finish over here. Wound was almost healed in 8 weeks time but hole appeared in the scar tissue before it get completely healed. So it was not completely healed.
After a month of in-complete healing, it started draining and doctor
gave me anti-biotic. It was draining on/off for about 2 months and
finally I had 3rd operation (with open healing) on 19th Dec 2005. This
time was quite careful, i did not go to work and took as much care as I
can. Well it took me about 7 - 8months to heal that wound. Finally it
healed 100% and I was discharged from hospital on 1st august 2006. I had no problem in about 10 months. Then after ten months, the scar tissue split a bit in middle (it was bit painful also) but luckily it healed
again. Now I am quite okay. But I feel uncomfortable during sitting,
sometimes I feel pain during long-term sitting.
Date: August 12, 2007
StoryHello Everyone!!!I'm a 23 year old female from Massachusetts. Wicked excited to see this website! Anyways on with my story about my ordeal with my favorite disease.I had my first episode with pilonidal cysts when I was a freshman in college (which was about 3 and a half years ago). Just above my tailbone had been hurting me for about a week.Then the morning of Family Day at my college I went to the bathroom to discover an awful smelling pus on the back of my shorts.I freaked out and had no clue what it was.I actually remember blacking out for a split second because I was so scared.I saw my mother a few hours later and told her about it. She told me that she had the same thing when she was my age and it was nothing to worry about. It didn't come back for another 2 years. This time was bad. My butt was hurting me wicked bad. I couldn't sit
directly on my butt at all. And I had to drive all the way from Plymouth, MA to Warwick, RI which is over an hour long drive. Not fun!
The next day the boil that was there had popped...at the most inconvient time.I was at a baseball game with my mother.I had to ride on the train with my sweatshirt wrapped around my waist until we got back to the car and my mother could take me to the hospital. The wet spot from the pus was huge and it smelled awful. I was very embarassed to say the least.I got to the hospital where they did lance the cyst and drained it even further.I was out of work for 3 days with the pain that followed.After that it went away for another year.This time it went away without popping.Then it came back and it was constantly draining. I finally gave in one night and went to the ER in my local hospital and had it lanced.A few weeks later I went to my doctors and discussed with her the option of getting this damned thing removed.On April 6 of this year I had surgery to remove the pilonidal cyst. It was a fun day because I got to moon Dr.Moon. Seriously my suregeons name was Dr.Moon. Since then my bum has been a little tender every once in awhile but the cyst has not came back. The scar that came with the surgery is atually pretty cool. All my friends joke with me that I have a Franken-butt. Haha. I'm just glad to have gotten rid of the thing.
Date: August 11, 2007
StoryHi folks, sorry for my not too good english, I am not a native speaker. But I want to tell you a success story (until now) and tell you that there is hope, this nasty thing can be healed. I know the desperate state of mind where most of us have been. I am male, 30 years old now. After 1 week of medium pain and having that certain bump (golf ball size, I had been waiting too long) on the left side of my natal cleft I had the surgery in January 2006. It was made in Germany (I was living there at that time) and the physicians decided to make an open wound process.
In Germany the patient is not really given any choice to have influence on the kind of the treatment, you know, the good old european habits, the doctor is still a half-god here. And they did not tell me too much about the nature of the problem. I am grateful to pilonidal.org because I got a lot of valuable info from here and I was able to understand the disease. I had some complications (the bleeding did not want to stop for 2 weeks, I stayed 18 days in the hospital, I suppose, they cutted something they should not have) but at the end everything was fine, I went home with an open wound 2,5 cm deep and 7 cm long. I was told it would take approximately 2 months to heal and they were right.
In the first two weeks at home I had a nurse changing the packing. Then I could do it myself as the wound was not so deep anymore. Then I made a little mistake, I started to walk (and work) a bit too early, I think, that's why the skin of the two buttocks was growing together "too fast", I have a little "step" in the natal cleft now and in some places you can read that this enhances the reoccurrence rate. A big wisdom in the case of pilonidal sinus: surgery is 10 %, aftercare is 90% of the success.
Anyhow, I have to live with it now. Once (1,5 months after the surgery) a small reopening of the scar occured but healed again in a few days. Since then everything is okay, I only have some uncomfortable feeling when I sit in the same position for a long time (train, plane, etc.). And I do the precaution activities (shaving the area monthly, washing it thoroughly, etc.) But I can stil remember the first days out of the hospital on my knees in front of the PC (I could not sit :) reading the incredible amount of information about this thing and having the well-known "pilonidal paranoia". My experience: get all the information you can, have those unpleasant days to digest them and then simply do the necessary things and do not let this ruin your life. But of course I am sorry for the people who don't get rid of this so easily, I know how is it laying on the side and on the stomach for long weeks. Cheer up, people, it will be better soon!
Date: August 10, 2007
Storyi am a 15 going on 16 year old girl. in february 06 i went to the bathroom and i felt 3 holes in my natal cleft. i told my mom and she came to check it out.the next morning i asked my mom to cal the doctors, and she did.i went to the doctors and he told me i had pilonidal cysts.we asked what that was and he said that it was caused by excess sweat and hair getting into the area. i also told him that i was riding a bike and i fell off,and broke a bone and i dont know if that had anything to do with it, that was the beginning of it all.
my doctor then referred me to a surgeon. wen i went to meet him he checked it out, and stuck a q-tip in there to clean it. he kept asking me does that hurt... does it hurt. by that time i was crying because it hurt sooo bad.i went and saw him 2 more times before my mom and i got tired of going to him because he had no bedside manners,didnt talk to us, and left all the dirty q-tips on the counter.we then asked to be referred to a new surgeon.
that is wen i met my new surgeon.the first time we met him we were very pleased, he was polite, he was concerning and he always numbed the area before he did anything to it.
on november 2 2006 i had surgery done to get rid of it.at first it was healing very nicely, then after a few months it started to slow down. my doctor was doing everything he could to try to make it close up. then he suggested a wound vac. i said ok i will give it a try.that didnt work out very well,it hurt alot.now i am in my 9th month of healing and it is still open.i am having surgery again sept 10 2007, two days after my 16th birthday. the doctor will recut my wound and then stitch it up, i will be in the hospital for 5 days.
my name is danielle and i have pilonidal cysts.
if u have the same thing as i do, please write to me if u have any questions,i could probably answer them for you
thank you for reading my struggle with pilonidal cysts
Date: August 10, 2007
StoryI got my surgery in December of 2006 and it is now August of 2007. The wound STILL HASN'T HEALED
I've been packing it, cleaning it with saline solution and even making sure to not sit on hard surfaces. It seems that it always gets very close to healing, and then breaks back open, sometimes for reasons unknown, and others because of me just having a bowel movement. Could anyone PLEASE give me some advice, this is making me go mad not being able to live the active lifestyle I lived before. If you DO have advice, please email me at dubya@mac.com. Thank you so much for anything you can offer!!!
Date: August 06, 2007
StorySo i had the same indications you hear from most on this website, a lump at the top of my gluteal fold as well as 3 little pilonidal sinuses (looked like holes in my buttcrack). After a few years and a few I & D's I grew tired of the pilonidals and opted to have surgery. The general surgeon recommended a closed incision and it was done. Everything was going as planned for the first 5 days, pain was controlled with medicine and i stayed on prescribed antibiotics.
Around the 12th day however I developed a severe hematoma which was very painful. AFter a few days with the hematoma (i was out of town and couldn't go to the doctor) it spontaneously drained (which you don't want to have happen, see the dr first!). After the Dr saw this he felt that it was also infected with MRSA, a very resistant bacterial infection, and therefore needed to be reopened. So now my beautifully healed strong scar had to be cut open to allow the infection to die and let my wound heal from the bottom up. He suggested a wound vac, and after my research, it seemed like a better decision than recurrent dressing changes. I am now on my 5th day of the wound vac, it has helped control/reduce my infection and the dr says that i'm starting to heal. My surgery was done on July 13th and here it is August 6th and i'm just starting to heal (supposedly).. Whether you get an open incision or closed incision (that decision is sort of up to the M.D.) it is certainly worth having the abcess/cyst taken out. THEY WILL NOT GO AWAY, THEY WILL ONLY GROW BIGGER AND EVENTUALLY SURFACE TO BECOME AN ANNOYING BOIL-LIKE GROWTH THAT FREQUENTLY DRAINS.
Although I haven't seen much improvement (its only been 5 days) the theory behind the wound vac is very sound and I believe it is cutting my recovery time in half. To all those who have lost hope in their recovery, I'm right there with you, I don't feel like I will ever heal. However I'm keeping my spirits up and am hoping to be close to normal by the 20th, so that i can start school.
-That which does not kill us only makes us stronger, don't give up no matter what!
Date: August 06, 2007
StoryI had a pilonidal cyst before...
I had problems with it three times, and solved it twice with hight dosis of antibiotics. Last time, I went to a good osteopath (not because of it).Crack-crack-crack...One day after, I was surprised (I was considering a surgery already) - IT WAS GONE!
The osteopath had explained me that this kind of cysts occur because there is something that blocks residues from cells to leave the body. What he did was, probably, "unblock".
Vist a good osteopaph if you have this problem. if it doesn't work, try a better one. Use the surgery only if everything else fails.
Date: August 06, 2007
StoryBefore you read my story, please remember my Pilonidal Cyst experience was very rare occurence. My doctors and surgeons have NEVER heard of anything like this happening before from a Pilonidal Cyst.
My first experience with my Pilonidal Cyst was Christmas Eve of 2005. I went to work and felt a small pull on my tailbone and thought that I had somehow bruised it. I didn't think too much of it. By boxing day (day after Christmas for you American folks), I was in so much pain I could barely walk and I could not sit at all. I had no idea what was going on. The next day my mom took me to a clinic where the doctor told me I had a cyst on my tailbone. He sent me home with antibiotics and Coedine and told me if I developed a fever/chills to go to the ER to have it drained. I had no idea what I had and what to expect as I had never heard of a "tailbone cyst" before. I was clueless and the doctor was not much help at all. By 7:00pm that night, I was in more pain that I have ever experienced in my whole life and developed a high fever. My husband noticed that my tailbone and lower back were very red and swollen. He rushed me to the ER where I passed out it in the waiting room. I was rushed into the back where the doctors performed emergency surgery on me. My husband and family were told that the cyst had ruptured on the inside and sent me into septic shock. They performed the surgery to remove as much of the cyst as they could. The doctor told my husband that if he had waited 1/2 an hour to take me in, I would have died.
I was a very sick girl for the next little while. I was in the
hospital for a week and was put on 5 different antibiotics to fight the sepsis. I was treated great in the
hospital, but the doctors where more concerned about the septic shock than the cyst. I still had no idea what this cyst thing was all about.
I was off work and house ridden for the next 3 weeks. After I recovered from the suregery/septic shock, I tried to go on with my life normally. I started having cyst flare ups at least once a month (it ALWAYS flared up when I was on my period). I would get this horrible pain and a small amount of pus would drain out of my butt crack, gross!
After almost a year of dealing with the pain and fear of getting really sick again, my doctor referred me to a surgeon who specialized in removing Pilonidal Cysts. I was scheduled for surgery for October 17, 2006. I did a lot of research and stumbled across this site. I finally started to understand what I had and that there is hope that it can be treated.
I was terrifed the day of my surgery, but it went great and I was released the next day. I had see a home care nurse EVERYDAY to have the wound checked out and packed until the wound finally healed. After about 6 weeks, the wound had finally healed and I was feeling much better.
It has been almost a year since my surgery and I'm still cyst free. My very large scar tends to "crack" open every once awhile. I just keep it clean and dry and apply some antibotic ointment to it and it closes right up again. I get a tugging pain every now and then too, but I'm told that this is normal for where I've had surgery and it takes time for it to feel normal again.
I STRONGLY recommend surgery to anyone who has to deal with a "tailbone cyst". It has defenitaly done wonders for me.
I also want to make a point on how wonderful this site is and how much helped me get through some post surgery scares.
Date: August 05, 2007
StoryHi Guys, Im 22 years old and female. I first found out i had pilonidal disease when i was 20 years old. This site helped me figure out what it was. My doctor gave me anti biotics and said i could go to A&E (accident and emergency) and have it lanced if i wanted to. I didnt, i let it burst on its own, having epsom salt baths daily. it was agony leading up to it but when it did it was a relief.
The next time i had a flare up was January 2007. After days of agony i decided to goto A&E to get it lanced, i couldnt take it anymore, they gave me a local annithetic although it didnt help much the pain was unreal as the doctor squeezed all the poison out of the 1 inch incision. He packed my wound and sent me on my way. I then had it dressed everyday at a local dressing clinic which i had to drive myself to. Luckly i only needed it packing for 2 weeks then it was superficial enough to heal up without. It left me a nice neat scar which i didnt mind. The doctor who lanced it for me had referred me to a sergeon for a general anithetic to get rid of the 2 sinus's i
was left with.
I went in for my general surgery on 10th July 2007, it was a closed excision and i was let home later the same day. After 4 days my stitches started to break down, concerned, i referred to my "advice sheet" i had been given by the hospital. It said to contact my GP which i did, he wouldnt even look at it, then i contacted the ward where i had my surgury they said i had to go to my local hospital, so there i was with 2 2 inch holes (the middle was still stiched)
and no one would look at it!!!
Eventually i found out where i had to be and was seen at the dressing clinic that i originally went to. I am still having my wound packed daily and after 2 weeks all the stiches had come undone so i have a 3 inch hole length ways and it was an inch or so deep originally, it is now at about a cm! Luckily i havent
been in to much pain recently, it comes and go.
hopefully this will be the end of it all once i am healed up!
Date: August 05, 2007
StoryThis is my second post on this site, but I want to offer some hope to those who are looking at surgery. I am 27 and I had closed surgery in November of last year, and here I am still with NO recurrences. It does get sore sometimes, and then I use No Bump (which I would honestly swear by) and at work (I have an office/mostly sitting job) I always sit on my special cushion because it keeps the pressure off my tailbone and it's SO comfortable! I've taken long road trips with my cushion and never had problems. So, surgery can work! And it can be a much better option than trying to live with it. I only wish I would have had surgery sooner!
Date: August 04, 2007
StoryI bit the bullet and finally had surgery to remove my "favorite friend" on June 21 of this year. I had felt a small marble on the top of my cleft about 9 years ago, I never thought of it as anything serious or important. About 2 years ago, it began to rupture. I went to the hospital twice (the first time I was scared to death, there was sooo much blood!) and had it drained. It finally got to the point where it was interferring with my everyday life. It began to "drain" itself on a weekly basis.. this, as all of you know, is not a good sign. It was tunneling and only getting worse with everyday. I consulted a surgeon on June 11 and he asked that I come in as soon as possible to have the surgery.
I read everything I could on this site and I began to feel at ease. This would be my first surgery and I'm 25 years old! The doctor gave me Loritabs for pain and it didn't faze me at all. From the moment I came out from anesthesia, I felt miserable. I didn't sleep for the first 5 days. I finally convinced the doctor to change my pain meds since they obviously weren't working and he put me on Percocet. This helped a bit.. We found a week later that I had a very bad bacterial infection so he removed multiple sutures and I have had daily home health to come in and pack my wound ever since. This has been going on now for more than 6 weeks! I have my next doctor's appointment next Wednesday and I am praying for some good news. I know that the wound opening has gotten smaller and very rarely do I feel pain now... just some irritation more than anything.
If I never have to deal with anything of this ever again I will be the happiest girl in the world. It was so embarassing before and now I feel like everyone in BR has seen my bum! <eek> I don't want to scare anyone out there who is considering this surgery, I just want you to know that not all of them have such an easy recovery. It does get better.. stay positive! Thanks for listening!
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Date: July 30, 2007
StoryHey, im 15 year old male and i have endured this
disease for about a year and a half, i have had 2 surgeries and nothing. I work for the Air Force reserve (i know 15 yrs old) and i have to run around saving ppl and everything. First time i realized this
disease was back in May of 2006. when i couldnt reach the floor all the way, i thought i had broken my tail bone, but my mom found a lump, so we visited the doctor and gave me the bad news. My first surgery was in september of 2006, pretty painful for the first couple of days, i couldnt walk that much and i was on my belly for 3 days. afterwards, it seem to be fine, but at another 3 months later, my pants were bloody again and it was coming back. I tried to endure it for 2 months, but i couldnt even handle that, so i had another surgery in december of 2006, which was some closed surgery, i recovered pretty quickly, funny story, i was so nervous during the operation i peed on the surgeon lol. Anyway, it seem to be fine even though it was still there and i lived 7 months, now its 2 times bigger, its almost out of my natal, so im going today to see if i can get surgery for this to see if it can get rid of it. Sometimes i feel like this is a curse from God, like a punishment. I cant live like this, i have to bath with like 200 other guys who dont know what im going through and that make jokes about having my period and bleeding, and i wear my shirts long so ppl dont see my bloody pants in the back. If there is any cure for it, let me know, i am will to pay anything to get this diease off me and have a normal life without worrying to save my butt every week.
Date: July 29, 2007
StoryHello All!
Im 33 yrs old female with Pilonidal problem.
My first one started last year early November. I went to the Emerg. Hospital. They told me there, well not much can do...take salty baths or they can drain it for me. I chosed the second one. I was don't know what Im getting into and how much pain is gonna be!.....wrong choice!
They gave me needle, couple minutes later Dr. made the cut, and I tought seriously gonna s..t myself. They packed it in for me I felt somebody pushing on my spine. Ouch........
Anyway, for almost two months Home Care Nurse came to my house to change me etc.....took a long time to heal.
My second one was this year March! I said to myself: Not Again! I decided to try the Epsom Salt bath! For full bath 1 cup epsom salt. Only took one try. Couple hrs after I felt like Im getting sweatty down there but no, that was the infection came out. Oh my, the smell, the smell was terrible....I used up the whole box of klinex paper, to get my behind cleaned up! Since then Im taking at least once/month Epsom Salt baths.
But my story not end's here! Just a week ago I started getting the pain again. So right away, every single day was taking those baths. Every day felt like Im just doing worse then better, started swelling up and then got red. Wondered why the salt not working. Friend of mine told me maybe the infection just not ready to come out yet. And finally yesterday, when I was standing in the room my hubby stepped behind me and smacked my butt....you guys know how man are, just for fun! Anyway, I felt this sharp pain for a couple second and then I felt something wet behind. Wohoo, it started comming out! I was soooooooooo happy! About 6-7 hrs later the infection was still comming out but the puffiness started going down and actually I can sleep on my back.
This morning I checked not much comming anymore. Later today gonna take another salty bath.......and for a couple more days just to make it sure.
" My hubby soo proud" LOL he said he has magic hands!!!
Anyway, I hope everybody can read this because I speak and write broken english.
-Take care every1 and quick painless recovery!!!
Date: July 28, 2007
Storyi first realized something was wrong at my 24th birthday party when one of my friends noticed blood on the back of my shirt. up until this point i had no indication of any problem. when my wife loked at it she told me it was a small lump right above the crack that was draining. i
am pretty hairy and am used to have ingrown hairs and assumed that's
what it was.
fast forward about a year it was still there and i'd been having some pain( not to bad) and it had been
occasionally busting and draining a bloody pus. my wife finally got me to go to my PCP who told me what it was and referred me to a surgeon. at the intial visit with that surgeon he was telling me that i needed a flap surgery to have it repaired, i would be in the hospital 3-5 days and would require about 90 stitches. well that did not sound appealing to me so i decieced to just deal with it.
after another year the pain had gotten so bad that when i would have flare up i could barely walk. so my wife dragged me to see another surgeon. i had excesion surgery that was closed with about 9 stitches this past march. the surgery went smoothly, and i had no post-op complications. i wondered why i had ever waited so long in the first place.
now it's july and i felt
that old familiar pain again the other day. i immediately called my surgeon and have an
appointment this tuesday. i am hoping that since it's in the early stages that i will not need another surgery, but if thats what it takes i would do it again anything is better that pain.
if you have this cyst and are considering what to do my advice is have the surgery. the pain is unbearable
Date: July 27, 2007
StoryHi,
I just had my surgery yesterday. This was my second surgery in...get this... 25 years! The only thing that I was really worried about was the IV...that was a breeze. The surgeon told me, prior to surgery, that I would not need to be packed and that I would just have to shower 3-4 times a day for twenty minutes each time. I was totally happy with that as that meant no packing.
How unhappy was I when the nurse, while I was in recover, was telling me that home care would be coming in to do my packing. I couldn't figure it out since the surgeon had told me no packing and she was telling me something else. Well, she was right, as I found out from my husband. The surgeon had talk to him right after my surgery and told him that he had to go deeper then he had orginally thought, right to the bone, so I would need to be packed
Please don't let this freak you, it sounds worst then it is. I got home, took my pain meds and was feeling pretty good. I became pretty obvious to me that I was losing a lot of blood...back to the hosipital...repack. The male nurse was very funny and was joking about how large the wound was.
A tip that was given to me that I would like to share...Take your pain meds 30 minutes prior to having your packing done, it does take the edge off and makes you more comfortable.
My advise to all is to have the surgery if you can...why suffer constantly when you can get it done and over with.
Good Luck to all.
Date: July 26, 2007
StoryHello I am a 22 year old male. I had my first cyst back in September of last year. I had my first surgery back in October of last year. Had a closed incision. I never healed from it. Needless to say in April, I started get get another tunnel and had to get another surgery this time an open incision. I was off from my work for 3 months and I just returned today but am not fully healed.
I've had various treatments with this from the ever so fun wound VAC which I recommend if your wound is big but it's more of a chore when your wound is small. To idodsorb and now panafil (sp). I am all but healed, however I am a tad unsure if I will heal, even though a spiritual reader told my family that I expect to heal completely.
Date: July 26, 2007
StoryI had surgery on my pilonidal cyst almost 4 years ago...to bad I was not aware of this website then!!!
I was an avid figure skater for almost ten years and while learning a particular jump I constantly fell on my tailbone, almost daily for about 2 1/2 months. I had it x-rayed several times afterwords, looking for hairline fractures etc, since I was still having trouble with pain, but never found anything. I had come to accept the fact that it would just be uncomfortable for me to ride in planes and sit in movie theatres...anything that required sitting for multiple hours.
My first job out of college put me at a desk for 8 hours a day...sitting the whole time, and gradually my tailbone pain began to increase until one day I literally could not sit, stand, lay down or anything without being in excruciating pain. I was awake for 2 days straight until I called my mother and she took me to my GP who took one look at the area and said this might be a pilonidal cyst. (I had been to several doctors before who NEVER suggested this, though I did not have any drainage) She reffered me to a surgeon and told me to call them immediately.
The surgeon's secretary heard me crying on the other end of the phone and told me to come in right away. Dr. Bati said she saw me come into the office and NOT sit down and knew exactly what was wrong. She called me in immediately and told me we needed to lance it.
At that point anything was better than what I felt like and I was glad to finally have someone suggest a solution. She told me that it was going to hurt and I said "worse than it does right now, I doubt it" but I was wrong. They did try to numb the area, but even having a finger on my tailbone caused me to start crying, so the numbing was almost unbearable. When they lanced it I thought I was going to pass out. I have never before screamed out loud in a doctors office (and i have endured 2nd and 3rd degree facial burns) but this was the most painful 4 minutes of my life. My mom was with me and had to leave the room because she couldnt listen to me.
However afterwards, I felt about 1,000,000 better...it was incredible!
I scheduled my surgery to be 8 weeks later...that went fairly well, much less painful than the lancing and while the recovery was long (4 weeks) and disgusting (packing open wounds is not fun) I had fantastic doctors and patient friends and family who really helped me, especially while I was housebound for nearly 3 weeks!
We now make jokes about the time, long ago, when for a short time I had 2 assholes.
Date: July 26, 2007
StoryOK, to be honest, this site has been very eye opening and depressing for me at the same time. "Depressing?" you might be confused, well, let me explain.
I am 29 years old, and an avid runner. I put in anywhere between 30-50 miles per week at decent speeds. The reason I took to the roads was to get my waist line down to a decent, and healthy level. All my life growing up, I had been skinny, a skinny malink as my grandmother put it. I had always played soccer (lots of running there) and since I was 12, have played hockey (mostly roller until my 20's then ice hockey) again, a sport where fitness is a key. When i was 16 I broke my right leg playing soccer and was out of commission for 3 months.
Ironically, I never missed a game as the injury occured in late December and the season didn't resume until late March. Anyway, during those three months I put on a few pounds, just sitting around doing nothing. So when I came back I was not the same player. By 20, I was away at college and almost 50 pounds heavier than my HS playing days (I did not play in college). By my senior year, my 38 inch waist disgusted me, so I tried everything i could to get it down, and in a year I was back to a 33-34.
Back playing hockey and soccer a few years later, I was down to a 32 and feeling great!
Then it happened...during a NYC Pizza tour, where my gf and I ate at all of New York's top pizza places, we were sitting at home eating left-overs (from Difara's on Ave J and 13 St in Brooklyn) when my Ikea kitchen set wouldn't hold my increasing pizza weight (and cocky leaning). SMASH! Right on my keester. It didn't hurt at the time, but a few weeks later I could barely move. I thought I broke my tailbone. I went to my PC doctor, who hadn't had experience with this before, and he told me there wasn't much I could do. Then it popped, and some foul smelling brown ooze poured out. I was mortified, called up my PC and he told me he thought I should contact a surgeon, as now it was clear what I had. the surgeon lanced me and in a few days I was good as new.
Now fast foward to 2007, and now my waist is a super 30 inches (three years later) and while I haven't experienced the pain like the last one, discomfort has set in, just a bit further up the spine than last time. Now while I am thankful that the pain has not been as excruciating as last time, I'm concerned that one false move could send it that way. I sit awkwardly everywhere, and hate to drive anywhere (as this seems to get it acting up again. What bothers me the most, is that it would seem that I have two choices...1. Go and get this lanced, and hope for no more recurrances, or 2. get the whole thing removed surgically, and have a long recovery time (with no running) and hope I don't gain all the weight I lost through hard work back. So I have to either take the chance that the surgury will work (not 100%-which I didn't know before) and bear the recovery time or live with this "discomfort" the rest of my life.
I have called my surgeon and will ask him what he thinks later this week. But I know I have a 14 hour drive ahead of me to the beautiful beaches of SC, and I don't want to have this thing flare up there...
Date: July 24, 2007
StoryESSENTIAL SUPPLIES TO ENSURE A PROPER POST SURGERY HEALING-PLEASE READ:
I am a 34-year-old female in week 5 post surgery of a pilonidal cystectomy with an open wound healing. My biggest advice is that you MUST insist upon 2 packages of Type VII Gauze before leaving the hospital as well as a tube of SURGILUBE.
They do not sell this type of gauze or lubricant OTC in a neighborhood drug store and this gauze is ESSENTIAL for packing the wound. It is the gauze used in the OR to pack your initial wound. Trust me when I tell you that this is the gauze that should be used. SURGILUBE should also be used around the wound after packing with the saline water soaked gauze because it keeps the skin moist and helps prevent painful crusting of the skin (try pulling out the gauze when your skin is dry and cracking around it).
I learned the hard way when I ran out of the gauze and opted to use J&J Nu-Gauze. This gauze caused me to bleed quite a bit on day 5 which set me back another week at home because I must have torn multiple layers of skin on the exit of the gauze. You do not want “superb wicking action” on the inside of your wound. You want soft gauze with large openings like a crocheted blanket in there.
After my nurse cousin-in-law brought me some more type VII gauze from the hospital, my healing process took off. It was healing at a very fast rate. Every two days the wound became half the depth of the previous two days.
My husband, bless his heart was the BEST nurse anyone could ask for. Seriously, the colo-rectal surgeon actually asked him if he was a nurse because the dressing was "the best I have ever seen". My hubby insisted on the type VII gauze.
The whole pack change took about 20 minutes at a shot at first and now-yes my hubby continues to pack the wound it takes about 10 minutes (removal of old gauze, witch hazel cleansing, re-pack gauze, SURGIlube*, top layer gauze, and tape).
My children (ages 6 and 3) have also been helpful tape holders for Daddy. Their curiosity has been funny. The 6 year old told me "Why don't you place your bottom in the freezer?" after hearing me say for the 100th time "My butt is on fire" (this was when I was trying to get up from the dinner table). My three year old asks me daily "Mommy, is your butt feeling better? Do you need to lay down?" Bless their little hearts for loving me and telling me it would all be ok. I’d rather give birth to triplets with an epidural that has worn down than go through this again.
Date: July 22, 2007
StoryWhen I was 21, I was up in the mountains with some friends and our dogs...on our way home, the dogs would jump out of the back of the truck at each stop light, so I told everyone that I would sit in the back with the dogs. When I jumped in the back, I sat on the wheel well & OUCH! Thought I cracked my tail bone really good. I'd had no pain, not an inkling of any problem there before.
After 2 days, I couldn't walk, so my mom carted me off to the emergency room. There, the doctor told me that I'd cracked my tail bone & there wasn't anything he could do for me, just pain meds. That's when my mom said, "Oh, I'm so glad she doesn't have that thing her father did in the Navy." So, the doctor asked what my Dad had, and she said, "Some kind of cyst thingie," and the doctor came back at me with a
scalpel & sure enough pus splattered all over the place. He diagnosed me with the cyst, packed it, and had me come back every day for 10 days to have it packed and cleaned.
At the end of 5 days, he said it wasn't getting too much better (and the packing process was more painful than anything I could have imagined) so he suggested surgery. I didn't want to do that, but I didn't want to go through this pain. My mother told me that my Dad had his surgery in the Navy, and never had a re-occurence. My uncle, however, refused surgery & was wearing a sanitary napkin each time his would flare up and burst. I decided on surgery.
They told me it would be a 20 minute surgery, it lasted about 5 hours. The cyst had grown down into both of my legs. The doctor told me he was concerned during surgery that he could have crippled me. I went home, followed the doctor's directions "Wash the area well, bend over and Blow Dry it with a blow dryer to make sure it gets good & dry, so you don't develop a yeast infection back there." I might look stupid, but I've never had a yeast infection back there.
My younger brother discovered he had the same condition, but will not have the surgery, and every few weeks, his drains and he's in a lot of pain.
It's been almost 30 years, and there are times when it's hard to sit for a long time (the scar is VERY big) but I am super glad I had the surgery. I had no real problems afterwards, and it didn't re-occur (which the doctor said it could "in the future").
Date: July 20, 2007
StoryHey,
I know how you feel, but you got to go see a Dr about this! It is not going to go away and at least you know what you have.
Do it, and do it now or else your going to be in a world of hurt later on.
Date: July 19, 2007
StoryLike everyone else, I have this problem. But after reading tons of the stories, I have a different experience. I have that same hole on my crack, and it has "flare ups" where nasty smelling puss comes out. But it doesnt hurt. Sometimes its kinda itches, but otherwise it doesnt hurt. I put toilet paper in my crack to help cover the smell and prevent my boxers from smelling to bad.
Is surgery really the only answer? Im really self concious about this...so if no one knows that'd be awesome. Also, Im 19 living by myself...so money is also an issue. Im sick and tired of living with this, so could someone help me?
Date: July 19, 2007
StoryI am female, 23, and was diagnosed with a pilonidal sinus about 4 months or so ago. About a year and a half ago i slipped and landed right on my bum while playing badminton on dew damp grass, also,
September of last year i was in a car crash and suffered whiplash, so my back
hasn't had the best of times! i have a driving job, i am overweight, and my uncle also had a sinus, so i guess fate had its finger pointed at me which ever way i turned really.
I had been suffering with an odd pain sitting down at the dining table every now and then since the early part of this year, and put it down to the shape of the chair and how i sat on it. it was only recently after another painful sit down that i discovered a swollen lump just at the top of my bum crack in the shower.
I read up in the internet about a pilonidal sinus, as it seemed very similar to what my uncle had described, and gut instinct told me what it was.
i carried on with it for a few months, it flared up perhaps twice a month, sometimes being quite a useful warning that my period was on its way as it often coincided with my cycle.
it was only when the swelling got larger and larger each time, it started to leak and get more painful that i decided to go to the doctor, who confirmed it as a sinus and put me forward for an op to have it removed.
Friday the 7th of july i headed off with my family to the isle of wight for a 2 week holiday, and as we were driving there, i felt that familiar pain starting again, but didnt worry too much.
by the sunday it had swollen to the size of a tennis ball, filled my crack completely and had started to engulf my bum cheeks too. the whole lot was throbbing with the pressure on my spine, and an angry red in colour.
i managed to get an emergency appointment with a doctor over there on the tuesday, was given antibiotics.
up until this point i had wondered if i was complaining for nothing, as the pain with previous occourances had been mild compared to this, but now i have experienced it at its worse, i never want to feel pain like that again.
within 3 days of taking the antibiotics, and having spent the whole holiday on my belly laid out and crying all the time it finally came to a head, and oozed thick brown/green/red smelly gunk which made me violently sick with the stench.
after a couple of days of it draining gradually, i am left with a golf ball sized lump in my left buttock, which is rock hard.
I have my operation on the 23rd of july, and i wont lie, i am nervous! i am hoping to have it stitched so that i can return to work within 3 weeks, but judging on this last episode, i feel it will be much worse than the surgeon first thought, and they will have to leave it open.
as i drive for a living, i need some sort of healing to have taken place before i return to work, hopefully i will still have a job!
If you are reading this website because you have one, make some noise with your doctor and get it taken out, NOW.
my uncle left it for ten years and ended up being bedridden while the massive hole healed for 18 months.
good luck to everyone
Date: July 19, 2007
StoryI am a 23 year old female and I experienced my first Pilonidal
abscess in mid May 2007. At first, I felt some swelling and tenderness at the top of my buttcrack. I ignored it, hoping that it would go away, and never even imagining the amount of pain that I would end up in. About 4 days after I first noticed the tenderness, the pain became more apparent, and I could tell that the swelling was getting worse also. At this point I was still hoping that it would just go away on its own. I absolutely hate going to the Dr. and I was determined not to present myself in a Dr's office with some weird swelling at the top of my butt.
After about 5 days, the pain became unbearable. It hurt when I walked, sat, layed down, and when I did anything else that required any movement whatsoever. I had my husband check it out, and all he kept on saying was, "I can't see anything out of the ordinary but swelling and two tiny holes." It turns out that those holes were sinuses. That night I went to bed and did not sleep for one minute because of the intense pain, I could not get comfortable no matter how I laid. As an adult, I have never experienced pain that was intense enough to make me cry
uncontrollably. After I started crying from the pain, I figured out that this was not going away, and I needed to see a Dr. I googled "buttcrack abscess" and this site was one of the first ones to come up. I read through the descriptions of the pilonidal cysts and I knew right away what I had.
I called my PCP and they had gotten me an appointment in a thoracic surgeon's office later that afternoon. When I showed up at the surgeon's office I wasn't sure if he was going to lance it right then and there, or if I would have to schedule inpatient surgery. Thankfully, he was able to lance it right then. I had never met the surgeon before, but he literally walked into the exam room, looked at it for about 15 seconds, and then got the scalpel and antisthetic injections ready to go. The local antisthetic injections were so painful. The skin was already swollen beyond belief so to have someone stick a needle in it was beyond horrible. I cried again LOL. I was still reeling from the injection when he began cutting with the scalpel, and I didn't even know he was cutting until my mom told me. The actual incision wasn't painful at all, but when he started to squeeze the area to get the pus out, I started screaming. After a few seconds of squeezing, he packed the incision with gauze, and I was on my merry way with a rx for Percocet and a Dr.'s note to excuse me from work for a week. SCORE!!!
The next day after the gauze packing was removed from the wound (thanks again mom) I was virtually pain free. I followed up with him a month later, and he did squeeze some more pus out of it, but he said it seemed to be doing well, and that I should follow up with him in 3 months. I am grateful for every day that I do not experience the awful pain of a pilonidal cyst/abcess. Take my advice DON'T WAIT, SEE YOUR DR. IMMEDIATELY!! IF YOU WAIT YOU WILL MAKE IT WORSE FOR YOURSELF!!!!
Date: July 18, 2007
StoryMy first run in with the dreaded Pilonidal Disease came during the summer after my Junior year of high school (2002). It appeared a couple days after I discovered computer based console emulators. I downloaded an emulator and over 800 games and sat slouched in the wooden computer chair for about 6-8 hours with only breaks to go to the bathroom and eat.
I noticed a lump after a couple days right at the top of my crack. It was very apparent when I bent over, and a lot of my teammates would laugh and say maybe I was growing a tail. One of my teammate's father was a doctor so I asked him and he told me it was most likely a Pilonidal Cyst. The day before I had it lanced, I pitched 3 no-hit innings with 7 strikeouts to close the game. Baseball being superstitious, I almost decided to keep it, but later decided it was much too painful.
So I got it lanced and drained by the doctor, which was relatively easy, and went on my way. A few months later, it came back and I had to have it lanced again. Then I decided to opt for the surgery.
After the surgery, I was cyst free for about 2 years. It was my second year of college when it came back. I saw a doctor who shaved the area and told me to come back in a couple days to lance it. Fortunately, it popped on its own while I was relaxing at home and then healed well.
My most recent was March of 2007. This was by far the most painful experience of my life of 22 years. The cyst was buried deeper into the cleft than the others and was directly on the tailbone. Having no insurance, I went to the hospital and came out with an $800 bill for the lancing. The lancing was terrible: 15+ shots to numb it, but it was so big that it wasn't completely numb, and a solid 10 minutes of squeezing it to get everything out. It was terrible.
Fast forward to right now, July of 2007 and I have another one. Only this time, TWO instead of one. I saw the doctor who decided to treat it with antibiotics and hot compresses, which caused one to come to a head and rupture, but the other is buried deep and is quite large. Unable to pay the $800 and without insurance due to a 3 month waiting period at my new job, I am hoping this one will follow suit with the other one and rupture on its own, but I don't think it is very likely. I only hope that this is the last one, but I know thats not likely either.
Date: July 17, 2007
StoryThe 7 1/2 year itch: Operation number 18 - the Karydakis Flap
Next Tuesday I'm going in for what I think will be my eighteenth general anesthetic procedure - this time it's a Karydakis flap.
I want to offer heartfelt thanks to the webmaster and hosters of this site.
I've had going on for about seven and a half years. The biggest problem has been pain and pain medication and, as I said, this is the eighteenth procedure I've had under a general anesthetic.
My sinus was huge. About 25cm long, up to 3cm wide or so and exposing lots of bone so it was deep. It's been cut back to that level plenty of times and something similar will probably take place next week.
I was at the doctors once for something else and they found two holes about an inch apart. Not much discomfort... until they cut it out and revealed all of that. Since then, pain has been the major problem.
I'm resistant to many medications, especially opioids, but hefty amounts of oxycodone have intermittently given me quality of life most of the time and until recently I used to stop the medication completely regularly but that's probably a story for another forum.
I'm compelled to write here because I'm astounded that pilonidal.org exists. For all by my last three procedures, I'd been under the 'care' of doctors who seemed sure that I was doing something wrong for this not to have healed but my current surgeon repairs that damage, talking about me collectively, because other people have this for a long time too, not just me.
I've had grafts, flaps, stitches, many vac dressings, many lengthy stays in hospital, etc.
Obviously I'm not going to write seven years of story here, just an intro for now. Do people want to know more? madmacs{at}pnc{dot}com{dot}au (Please don't place my address without being written as I have, I don't want more spam.
One of the most painful things for me is standing. After a few minutes it gets excruciating. Anyone else have this?
Date: July 13, 2007
Story-Luke- 21 years old....
All started when I was eighteen years old. I enlisted into the active duty Air Force. All was great, going to serve my country and get school 100% paid for and see the world, with good pay and good benefits. What kid right outa high school turn that down. Well all was great BMT was frig en' awesome, very fun, and make lots of friends from all over the country. Of course BMT was about physical training and learning. The second to last week of BMT my tail bone really started to hurt, just thought it was sore because of the sit ups on the hard concrete and blacktop. So i went to sick call to have someone look at it, and get some pain killers, had the doc look at it said what i had previously presumed about the sit ups. well i was popping 800mg Motrin like the were skittles, running a temp of 102 went to sick call again.
They looked and still seen nothing, at this point it was swelling up so bad it was hurting to lean forward because the skin on my back was "tightening" so to speak from the swelling. After 5 days of running a 103 temp and barley making it through, i could no longer walk i was in such excruciating pain, i returned to sick call for the 5th time, and seen a different Doc, who finally was able to diagnose what the problem was. When the doc told me, i just thought wow...., at this point the
abscess was showing really good and big, while sitting in waiting room after diagnoses, it burst! And boy was it messy, bloody, and smelly. (this was now the last week in BMT before i graduate) But woot it actually felt so much better without all the pressure there. So the Air Force Lanced it, packed it, kept me in BMT for an
additional 8 weeks while treating it, and then guess what! They kicked me out! they told me that i hid this pilonidal cyst from them and lied about it on my medical history(though i had never heard of such a thing before, let alone ever have any pain in my tailbone EVER!) Of course me the "Peon" Vs them. Yea i lost that debate real quick. Was sent home, without any VA benefits, or school benefits. Was very resentful of them for that.
Upon my return home i had it surgically removed and none the less, After a year and half of working dead end jobs, I was able to get a Medical Waiver, and Joined the Air National Guard as a Crew Chief(Aircraft Mechanic) im now 21 years old almost 22 and even after the surgery I am currently having a reoccurance caught it quick and had it lanced today while it was in early stage.... hopefully clears up quick. Long Story but kinda got screwed for such a stupid lil butt sore.... PS When i Re-enlisted in the Guar, I did BMT ALL over again! was fun specially since i new what to expect hehe :)
Thats my story....
Luke
my yahoo is RockfordCutie19
and my MSN name is Killa_blade17@msn.com
for those of you with messengers
or email.
Date: July 13, 2007
StoryWell my story starts out a long time ago, when I was
conceived. Just kidding, I'm not going back that far! But In a way it did. Both of my parents had Pilonidal cysts at one time or another, and so in a way I was genetically screwed. I am currently 15 years old, and have had this cyst for as long as I can remember *a few years back*. I am active in sports as of late, but it is
relatively new for me. I struggled through the season with a oozing, bleeding, itching, smelly sore in a place where the sun don't shine. Needless to say Every practice I'd be wearing fresh underthings and they would be ruined by the end of it. Besides the daily pain, and akwardness this mysterious sore caused, I never told anyone.
When I did tell my mother about a year ago, she didn't know what it was and to this day does not remember me telling her. See, I am a very clumsy person and I manage to fall down our stairs at least once a year. This is where it all started. I fell. Obviously, I cannot avoid it. But what was odd was the paralysing pain it caused me. I literally could not move my legs, and was stuck laying on my stomach for two days. To this day by tailbone is very tender from these incidents. The sore just contributed to this pain. So over the years I have lived with constant pain as a compainion. Back to the present, I curently do not have a job. But I do on occasion clean peoples houses. Today I was scrubbing a floor on my hands and knees, and when I got home my tailbone and sore combined crippled me for about 4 hours onto the couch *not a good place to be crippled for hours on end, it does NOT help* The sore has currently been acting up ever since I made a visit to the beach. Sand + infected Pilonidal cyst = NOT PRETTY. So after complaining enough my mother finally got curious, and I showed her the sore. I could tell she was trying to down-play it. But after researching online until 3:30am, I have found that it is scary. I have only had sugery once, and it was a removal of a growth on my toe *nasty, open sore afterwards* and even that made me squeemish. I will be forced to a doctors visit probably withen the next week, knowing my mother. But I have the sports season coming up, a Sweet Sixteen party to throw, and other very important occasions I must be ready for. I am very un-easy about this....but I will be the one to make the final desicion. Live with this, or End it. I'll keep you posted.
-Marisol Paman-
Date: July 11, 2007
StoryI first started the adventure with the pilonidal cyst in February 2007. I was walking to my car after a Friday shift at my job, and it was also after a snowstorm, so there was snow and ice on the ground. I slipped on a patch of ice and fell down. After I got up, I was sore and in a little pain, but not bad. Fast forward to Monday morning . I was dressed and ready for school, and I went to get my stuff and said, "Mom, I can barely walk, I'm going back to bed". I went back to bed and put ice on my lower back, figuring my tailbone was swollen from when I fell. Later that night, I put heat on it because my muscles were tight from adjusting the way I sat because of my tailbone, and from a serious horseback riding accident four years ago.
The next day, I went back to school and tried to do my best since I was in a lot of pain. During a class, however, the thing burst and drained a rather nasty pus. I went to the nurse and she said to call my doctor. I went to the doctor after school and she said it was a boil, packed it, gave me antibiotics, and sent me home. I was in horrible pain the next morning, so I stayed home again. In the end of April, while still reeling from the Virginia Tech massacre and facing the fact that I am attending that school, the pain started again. Luckily, I had a physical a week later with my regular pediatrician, so I showed her my thing (I didn't know what it was yet) and she said it was a pilonidal cyst and that I needed to see a surgeon.
Two weeks later, my surgeon confirmed the diagnosis and on May 23, I had my excision surgery. It is almost 3 months later, and it is still open and draining, though it's healing. For me, the appointments every two weeks with my surgeon are the hardest to endure because he pokes rather hard at it and packs it with gauze. One time, he also put silver nitrate on it, and that burns!!! This week, though, was the worst so far, because he poked at it and looked to see how well it was healing, but he also shaved the hair around it and packed it with a large piece of gauze. I had my mom change it that night after dinner, and she pulled it off with a lot of blood on it. I was in tears for at least 10 minutes because the pain was unbearable. We went to change my bandage the next day, and it was bloody again, from the gauze-ripping incident. Make sure you ask your surgeon to not pack it with a folded piece of gauze just wedged in there really tightly. It is EXTREMELY DIFFICULT AND PAINFUL to remove. Good luck to all affected......P.S.- I'm proud to be a Virginia Tech Hokie!!! :)
Date: July 11, 2007
StoryWell I'm 14 years old. My cyst started forming when I turned 13 and whenever i would sit it would cause major discomfort, i thought it was just from snowmobiling. Well a few months later it opened into a hole, that drained pus and hurt terribly. I was too
embarrassed to tell my mom. So I kept it to myself for about a year. When I finally told my mom she was freaking out it scared the sh*t out of me. I thought there was something completely wrong with me. It made me so self conscience its
unbelievable. It would drain and show up on my jeans at school and everything. (by the way its like right under my tailbone) I was always worried about it. I could never sit down for longer than a 1/2 an hour!! so the day after i told my mom she took me to the doctor and he told me it was a cyst that would probably need to be removed. i was mortified. im just glad it wasnt infected. =[
Anyway about 2 months later i had surgery on my xmas break!!! the surgery went well and doc told me about 3 months of recovery. my mom had to pack me every night, which she didnt. i wouldnt let her it caused more discomfort. i went for a visit every two weeks and for FIVE MONTHS he kept telling me it was looking better, when really it wasnt. the 6 month visit i got news that tore me to shreds, i needed another surgery because its taking way too long to heal. & it still drains!!! ='[ i blame myself for not letting my mom pack me every night. its costing my parents money and my summer ruined. i really hope this surgery works and its gone for good and i can be a normal kid again.
p.s if your reading this and your kid has one, make sure to pack them!
Date: July 11, 2007
StoryI had my first experience with a Pilonidal Cyst about 3 years ago when I was 22. I woke up one morning with "lower back pain". I thought maybe I had a few too many drinks a couple of nights prior, and that maybe I had fallen out of bed or something. As the days went by, the pain only got worse. And so did a very suspicious looking "lump". Eventually one morning, about 4 days after the pain began, I found it impossible to go to work. I called my doctor
immediately and headed straight down to her office. She determined that I most likely had a cyst, and that I should begin antibiotics, heat compression and vicodin. She was certain it would come to a head and be over with.
Over the next few days the pain worsened, as did my condition. I couldn't get out of bed, and I could barely walk, let alone go to the bathroom. I had taken almost all of my vicodin, and felt there was nothing else I could do but go to the hospital. My parents had to drive up to Boston and carry me out of my apartment. My doctor made arrangements for me to see a specialist at Rhode Island hospital 2 days later. By that time, I could barely get out of bed, my skin was yellow and the pain was unbearable. I had to lay down in the back seat of my mothers car on my stomach. The doctor said that he would have to drain it
immediately. The injection the nurse gave me to numb the pain was unbearable, as my skin was already so extremely stretched from the cyst itself. It was all over in about 20 minutes, and I immediatly felt ten times better. The healing time was fairly quick, as well.
About a year went by, and I began to feel a similar pain in my lower back. I
immediately went to the emergency room, as I knew what was going to happen and couldn't bear the thought of going through all of that again. The doctor took a look, and told me that the cyst was superficial, and that there was nothing he could do at that point. I had a breakdown right there, and they tried to calm me down, but I knew what I was in for. I went to schedule an appointment with the doctor I had seen prior who had drained the cyst the first time, only he had moved to an office in Florida. The doctor I saw said he would attempt to drain the cyst, but claimed it was unsuccessful, as it didn't appear to be infected. I told him he was wrong, but he assured me that there was nothing more I could do but take more pain killers and wait and see if anything happened. About 3 days later, the cyst was the size of a large lemon, and I could no longer walk. I scheduled an appointment with the doctor to have surgery, but he wasn't available for another 4 days.
The day before my surgery, my condition had worsened to the point where I could no longer move my body. My parents once again had to come and carry me out of my apartment, only this time they were really nervous as I was sweating non-stop, and I could barely breathe, I was in so much pain. I had to drag myself by my arms on the floor just to get to the bathroom. The next day when my father took me to the hospital, he went inside and asked for assistance. They brought a wheelchair. Once they saw me, and I explained my situation, they were in complete shock. They brought me a recliner on wheels and i had to lay on my stomach once again, as they wheeled me into the hospital. Once inside, everyone kept marveling at the size of the lump on my back...now literally the size of a grapefruit...NO JOKE! When the doctor finally came and took a look at it, he himself looked utterly shocked. He just shook his head and walked away. A guy came over and explained that he was very sorry for my pain, and said I wouldn't have to wait there before my scheduled surgery in the state I was. He said he would give me some morphine to take away the pain, but then I would have to wait about 30 minutes before they would put me to sleep, but at least I wouldn't be feeling so badly.
They must have given me a lot of morphine, because that was the last thing I remembered. Also, the first thing I remember when I woke up was the morphine injection. When I left the hospital, I seriously felt like a million bucks. I was still in pain, but compared to what I had been living with prior, it was like being in heaven. The next 2 months were spent seeing the doctor once a week, so he could look at my improvement, and caulterize the wound...which he insisted did not hurt every time he did it. I had to keep the wound open for about 2 months to ensure it healed from the inside out -- Not the most amazing thing to go through when you're a 23 year old girl. However, with all of that said and done, I haven't had any problems since.
The doctor said he was surprised that I didn't have the surgery the first time around, but to be honest, I was never given the option. Even if I had, though, I'm not sure if I would have done it or not. However, now knowing that after having the surgery, the chances of another cyst aren't as great, I would tell anyone to do it immediatly. There's nothing worse than dragging yourself by your arms to go to the bathroom, crying hysterically all the way because the pain is so severe.
I have never heard of anyone having an experience as intense as mine, and hopefully that means that not many have. To anyone suffering....GOOD LUCK!!!!
-Em
Date: July 10, 2007
StoryI had my first problem with pilonidal cysts when i was 19. I am in the Navy and was stationed in Charleston SC and did not care for the medical there. I knew that something was wrong because of the intense pain and bleeding, but was unsure what it was or how bad it was. Shortly after I transfered to Ballston Spa NY where i had heard the medical was much better. I went in to see them and they told me I had a pilonidal cyst and referred me to a general surgeon. I saw him and in Early November of 2005 i had my first surgery. They told me it was very routine and i should feel much better in a couple of weeks. Well after a month my closed wound cyst removal site felt better. 2 weeks after that the whole thing opened up again. I was told it was infected and needed reexcision. So in early january of 2006 i had my second surgery. 2 months later i returned to work and felt great for about a month. I went back to my doctor for a follow up and they told me it was still screwed up. I was then referred to a different surgeon who told me that it would need to be reexcised again.
I underwent the surgery again in march or april of 2006 and was told when i woke up that the first surgeon had never removed the entire cyst and that was why i kept on having problems. Well after i had the stitches taken out i still felt kinda crappy so i saw my doctor again and guess what, august 31st 2006 i had my 4th surgery. I was then transferred to groton ct and was told after only a couple months that i needed surgery again because something had gone wrong and it was infected again. On December 9th 2006 i saw a new surgeon and was told that my last surgeon never removed all of the stitches and that helped cause the new infection. On February 13th i received my first open wound surgery for pilonidal cyst removal. That is right, 5 surgeries. Now here in July i am waiting to see if it will recur again, I am hoping that this last surgery worked but i dont want to get my hopes up to high just to be shot down. But anyway this is my pilonidal cyst story, 5 surgeries in a year and a half, a 10-12 inch scar that had scarred close to half of my butt together, and the hope it doesnt come back again.
Date: July 09, 2007
StoryAfter reading a lot of stories and flicking rhrough a lot of the info, i honestly don't know how some of you put the surgery off for so many years!
Basically, i arrived in the States from Australia not too long ago. After visiting a theme park i thought i had bruised my tail bone. 3 days later i woke up hardly being able to walk...
I found a random neighbour to take me to the ER where they admitted me straight away because of how much pain i was in. I just couldn't stop crying. After speaking with a Dr, he said what i had and also said that he had it a few years back.
After an hour, i had been openned up, poked with over 10 needles and prodding sticks, had a tube stuffed up my back and giving sooo many pain killers to knock me out i can't even count how many.
I had to go back to the hospital the following 2 days for check ups. On the 2nd, being yesterday, i had my tube removed which gave me some relief. I had my first good night sleep, only to be interupted in the middle of the night to take my meds. I have to take my antibiotics every 5-6 hours, take 3-5 baths a day and make sure i dress is properly.
So now that im healing, i googled the cyst and stumbled apon this website which i chuckled at first but and truely thankful for it being here.
So thats my story. a freshy and from and aussie 20 yr old trying to backpacking around the states and canada. I hope i can manage my trip the canuck land next saturday. I going to purchase one of those doughnuts!!
Date: July 08, 2007
StoryI had surgery about 6 weeks ago. I had the open procedure. My wound was 11cm long and 6 cm deep. About 3 weeks ago the doc put me on the KCI V.A.C. It has worked wonders. Thursday the 12th I will have the vac taken off. My wound is almost completley healed. I give Jesus Christ all the glory!
Date: July 06, 2007
StoryUpdate.
If pain is bad after op instead of diving into salt bath try a hot water bottle on area instead (Dr told me this). It worked fantastic for me last two nights running...sleep perchance to dream lol.
Steve Malta
Date: July 05, 2007
Storygood day to all... i am now 16 years old. i had my pilonidal cyst when i was 14 and after half a year i started to have an abcess. in the long run it developed into two sinuses. it was only painful when the abcess are drained and when i lie on my back but aside from that i can do things normally. i got tired of the abcess and decided to have it operated. we went to a couple of hospitals but they can't really tell what it is until we went to this last hospital where i had my operation. i had my operation last june 1. i had 7 stitches. after 2 weeks the abcess started draining again and until now. i was so depressed because i want to get healed fast so badly and i hate being absent from school and being left behind with the lessons also i thought it's a very rare disease and that i was the only one in the world who has it but after reading and searching this site it gave me hope and i am so happy to know that there are people who knows how it's like suffering from this disease and that i'm not suffering alone. it is still swelling a bit. this morning i was absent from my first class because we went to the doctor to have the stitch cut. it was pretty painful. the doctor said that the abcess and the swelling would just go away. im afraid it would reoccur but right now there's nothing i can do but pray and trust God that He would do what's right for me. i just hope it won't reoccur. right now i'm still going through my healing period and would have to wait on what will happen but i hope i heal just fine. i'll update again on what will happen to me. goodluck! =)
Date: July 04, 2007
StoryI first notices I had a pilonidal cyst when I was 26, about 4 years ago. I was working out at the gym and I thought I was doing too many abs....After a while, the pain went away, but it came back once in a while..<paragraph break here> A year and a half ago it got infected really bad and had it to get it drained. GOsh! it hurt sooo bad...Then after six months later, it got infected again, got antibiotics, and the doctor suggested I get it removed. I thought about it a lot, until a couple of months ago when I decided to see a surgeon....I had surgery exactly a week ago. I was so relieved after I knew it was gone....I am so hoping it heals fine, and it doesn't come back. The pain is not tat bad at all, it is actually the discomfort from not being able to sit down the way I want. I have an appoinment with the surgeon next week. Wish me luck!
Thank you for putting this great website together and sharing all this info plus your stories!
Luciana
Date: July 04, 2007
StoryHi everyone.
Had mine done last week after 12 years of putting it off! Unfortunately had no choice, as one (with sinus) had become three. Agony was as intense as anything I had felt prior to this, and believe me I had some ops before!
Dragged myself into ER and found myself 5 hours later undergoing surgery. SHIT...what a hole! I never dreamt that it would be like this? Whatever happened to keyhole surgery!!!!
This website has been a great source of info, but I hope and pray it takes less time to heal than some of the other stories.
I now find myself lying on the bed face down and have been for a week contemplating life....If it takes as long to heal as some of the others I don't know what I'll do? I was thinking maybe 2 weeks tops and back to work, but am having to seriously review my time frame.
To close, this is really a hushed up topic which needs to be spread more! I always had assumed that I had bumped my tailbone and reading the other stories has made me realise how much we all have in common.
The rehab sucks BIG TIME, but again PAIN was so bad....
Steve (Malta)
Date: July 03, 2007
StoryHi all! I had my first (and hopefully only!) pilonidal cyst lanced Friday 29th June. It was the worse pain ever. The pain started really suddenly on the Sunday and got worse over time. On the wednesday i took a visit to my doctors who gave me some pills and said that it could possible go away, but by Friday it was too much and i went down to the hospital. They lanced it and drained it and packed it.
Currently i'm visiting my doctors daily to get it cleaned and re-packed, which is painful. The wound is deep according to the nurse and takes about 25cm to pack it. I really hope it doesn't come back..i just couldn't take the pain.
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