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Date: January 31, 2007
Storyi need help guys. if anyone has any info after reading this then please email me at crazewaffle7@hotmail.com.
i had my second surgery august1st. i have healed from the surgery and have no more cyst occruances. however, the pain never went away. after many tests i apparently have a nervve problem. i went to physical therapy which only made it worse. i am scheduled for a cortazone shot in a week. i don't know if it will be a permanent or a temporary solution.. or if it will even work at all. i can't sit, can't run, and i am aspiring to be a state cop. that means i have to doi sit ups and run for the test... right now it is impossible. my boyfriend and i fight all the time because i can't ever get comfortable and he has to be so gentle around me. all the things i love to do are hard because i am always in pain. has anyone else had this problem due to surgery? if anyone has doctors or places to go to please tell me. i am desperate to have my life back. thank you
Date: January 28, 2007
Story
I first experienced a pilonidal cyst at about 17 years old, when it hurt to sit properly in my desk and when I felt a small bump on my tailbone. Of course at that time I didn't know what it was and figured it would go away, and it did. Over the next 4 years I was a pretty serious equestrian. I had one bad fall and broke my tailbone. Any tailbone pain after that was attributed to the accident. Now I'm 23 and living in Costa Rica. I spend quite a few hours a week slumped in a bus seat traveling somewhere. I noticed on one trip the same sort of tailbone pain I felt at 17. I felt the bump, only this time it was red and painful. As it became infected, I got worried and went to the farmacy. They gave me a shot to make the cyst "ready" to be lanced. A few days later I found myself in the worst pain of my life, and it would only get worse. I took myself to the hospital to see a dermatologist. The doctor called it a "pilonidal cyst" and quickly prepared himself for the lancing. Being a gringa, I was sure he would numb the area. My cyst was lanced and drained with no anesthetic whatsoever. I thought I was going into shock I was in so much pain. That was about 2 months ago and I am terrified of it coming back!
Date: January 25, 2007
StoryMine is an unusual case. I am a 52 year old female, and I had the surgery at age 19. First I will share my story and then offer what I believe to be some VERY important information regarding LONG TERM effects of the surgery. To begin, by the time I actually got the surgery I had already had three major eruptions, over a two year period. I was away at college and kept these to myself. I never got them lanced and I had excruciating pain. The swellings eventually erupted and drained by themselves. Waiting so long for some kind of surgery was probably not a good idea, because when I finally did have the surgery the operation took many hours and I was told the cyst was the "size of a grapefruit" - the largest one they had ever seen. I had many tiny stitches along my rectum, a large plaster cast and more large stitches, my butt crack was half sewn up (and remains that way today). I laid on my stomach for many months going through many gauzing and repackings. What finally healed me was when my mom (who was distraught) tossed me into a plane and we flew to the Virgin Islands (against the doctor's warning that "A piece of sand will get in there and the whole thing will start again!"). I swam every day in the sea for a few weeks and healed in a flash. As far as the cyst, they must have gotten it all because I have never had a recurrence.
PLEASE, PLEASE understand mine was a MOST UNUSUAL case. My mother had it, my father had it, and neither of them had anything like what I went through. The MAIN reason I am writing this is, being older than most of the people on this site, I may have some VERY important information regarding long term. By the time I was 23 years old I was suffering from bad constipation. Food allergies followed and other problems over the years (in spite of a strict raw food diet and colon cleansing), including benign tumors and cervical cancer. In my forties I developed horrid, constant lower back pain. At times I have thought I was singled out for misery, or that I must be crazy, since other people my age (through the years) were not having these problems. Another symptom was a constant sense of being "ungrounded". There is a wonderful doctor anyone can listen to on the radio, daily. His name is Dr. Bob Marshall. He often talks about "interference fields": due to surgical scars or traumas, the natural flow of energy in the body gets BLOCKED. this causes various problems. The problems do not occur immediately but over time. These troubles may seem unrelated to the tailbone, but they eventually trace back to an interference field. The good news is that interference fields can be completely healed using natural means. His method uses a series of mud and clay packs (you have to apply the clay in a very specific manner). It is a particular kind of clay. If you want more info, The Dr. Marshall site is:
http://www.healthline.cc/ Their phone: 800 370 3447. In my opinion their website does not convey how brilliant this guy is. I STRONGLY suggest listening to Dr. Marshall on the radio. At first he can sound confusing, then, after a few of these half-hour shows, he begins to make total sense. On the site, you can look up times and stations where you can hear the show on AM radio in your area. During the show he often describes the clay packs. I have not completed the packs yet, and I am currently investigating 2 other modalities for treating interference fields. One is called Neural Therapy, which uses injections of Procaine (like Novacaine) that, oddly, seems to help. I am not wild about injecting a toxic substance into my body, but I am looking into it anyway. The other is called a "Tenscam Unit", and it is non invasive. These can be googled. For those of you that have had the pilonidal trauma to your tailbone area I just want to say that if you happen to notice other (unrelated) problems over the years, you are not crazy! Although my surgery was quite extensive and therefore it created a whopper interference field, even a lesser trauma may still cause difficulties. Just know that you can treat it. By the way, if you know any women who have had C-sections they may want to unblock their interference fields, those scars are deep ones too. Hope that helps. -HF
Date: January 25, 2007
Storyeveryone listen> I am a 29 year old male. I had my pilonidal abcess when i was 16. Went to the doctors really late and they lanced it on the spot. very very painful. anyway they packed it 2.5 inches deep for 3 weeks let it heal from the inside out bla bla bla, the same old stuff. Well pulling out the gauze was worse then the lance. Long story short, that didnt work. it initially healed but get returning, multiple times. i remember being only cut once so i guess the incision just kept leaking draining and all that stuff. anyway i really cant tell you all lhow long it was from the time i firts got lanced to my surgery but here is the important part. I havent heard anyone describe there surgery this way but here goes.> like i said i only hade one lance and one surgery. they sent me to a plastic surgeon and basically he said because where it is very sweaty always moving hairy it will always come back or atleast the chances were good. so to end it once and for all what he did was cut me in like a z-- they calleld me zorro. i now have half a butt crack 58 stictches inside and out. where the top of my butt crack was is now a hunk of flesh they really has no feeling. it literally looks like i have half a crack. i tell my boss when i do things half ass i show him why. i do remember they had a drain plug in my butt cheek like a week after surgury and boy di that hurt when he pulled that out. but good news one lance reacurred then only one surgery.. its been 12 years no problems whatsoever other then it is rather disturbing looking hahah, luckily i met my wife and she said i dont care you butt looks better in jeans now. hahah when i say half my crack is gone it is gone. to the point of my first bow movement i was scared it would rip but no problems....... this descriptions to me sound like no other on this board but i swear i am glad this was done this way. i dont regret it whatsoever i knew it was going to be a crazy ugly scar but my surgeon said this way is the only way the chances of it coming back were as close to 100 percent as possible. i think it was so unusual that i remember the surgeon and 3 other nurses taking polaroids of the scar after wards for medical reasons its late i hate typing my spelling sucks and i dont use caps and periods but i have been there and i think i have a sucsess story-- plus im late for work and jsut came across the site. now email is hd1080@verizon.net i do have pictures if someone is curious thanx good luck
Date: January 25, 2007
StoryHello, my name is shenae and i am 16.
on veterans day of '06 my grandma dropped me off at the library, which is 12 miles from my house, and about two minutes after she was gone, i realized that they were not open. I climbed up ontop of a cement wall, and sat, talking on my cell phone for over an hour. When she finally showed back up from her errands, my tail bone hurt from sitting. I had cracked it in the 6th grade when i fell down icy steps, and just figured that this was what the pain was from.
two days later, it hurt so bad, i didnt want to sit, and i was having trouble walking. I am homeschooled, so my mom let me take the day off early, and i sat with a heating pad and watched a movie on the couch.
that night, i experienced the worst pain that i ever knew to be possible, and i had had a pretty bad 4 wheeler accident the year before, so i knew pain. I probably got a grand totally of 2 hours of sleep. laying on my side hurt, laying on my stomach hurt, laying on my back was not something i would even concider.
the next morning i walked into my moms room at about 630 after waking up for the last time in tears. i told her that my tail bone pain was so bad that i could barely walk.
as she called my grandma to come and pick up my siblings because my dad was already at work, and we were going to the hospital, i was on my knees and hands on the kitchen floor. i felt sick to my stomach, and i knew that something was terribly wrong.
we went to the hospital, and they told me that i had a pilonidal cyst on my tail bone. they told me to just call my regualar doctor when i got home and schedual and appointment. they also gave me iv antibiotics.
after about two weeks of not being able to sit, and going to the doctor every other day for antibiotic shots, my cyst actually burst. it was the grossest thing that i have ever seen, or smelt.
my doctor then drained it, and sent me home. i came back a few days latter for the same thing, and then again a few days later after that. they had mentioned that surgery might be the solution, and i was not worried, anything to fix this problem!
my surgery was schedualed for the day after christmas, and we had 8 people in our house from the holidays.
i had an open surgery, and the surgen said that it was a lot bigger than she thought. right after surgery, the cavity was big enough you could have fit a lime in to it, and it took 12 feet of packing each time we packed it.
it has been a month now, and i can sit for about an hour with out being in horrible pain. i still take half an oxycodone twice a day, and and really happy this is coming to an end. it has shrunken to about the size of an egg now.
i do a lot of mission work with my church, and had to drop out of a mission trip that i would have gone to in 3 weeks, but i think that if this goes well, and it never comes back, that i will be happy.
i hope that everyone else out there dealing with this "pain in the butt" has as much sucess with the surgery as i did.
Date: January 24, 2007
StoryPaul's Story
Well, this is not my story, but my husband's. This all started for him in December 2000 when he noticed a small boil on his tailbone. He was 21 at the time. The pain came soon after. After consulting a doctor we decided to have the surgery. After the surgery, we thought the healing process was on it's way. The wound was the size of a large tomato, and we had the visiting nurse everyday for 2 weeks to clean and dress the wound. They decided to leave the rest of the care to myself and discharged him. The wound WOULD NOT heal. We decided to see a different surgeon to assess the situation, and he said the cyst was back. Well, we had 4 surgeries with him over a four year period, and the wound would never heal. I must add that he is extremely hairy, and needs to be shaved every two weeks. We again changed surgeons, and the surgeon along with a plastic surgeon had decided to close the wound. As soon as the stitches were removed the wound started to open again...and all the internal stiches started to break apart. Not to mention 2 additional wounds have opened under his balls for drainage. Well, here we are going on 7 years, with open wounds, 3 children, and saving so we can have another surgery. We have insurance, but also a mortgage, car payment and other bills. The disease has taken over his body and not a day goes by without pain, drainage, and absolute confusion as to why this disease will not go away. I hope this does not scare anyone out of surgery...I really think he is an exception!!! Will update after the next surgery.
Date: January 23, 2007
Story
Hi, My name is Phillip and I have arecurring inflamed one at the bottom of my spine. I first noticed it several years ago and it has only flaired up 2 or 3 times. There are drainage sinus, and it has drained, I have seen the drainage in on my bedsheets, pajama pants and underwear. It has been very painful. At one time I had a Dr. look at it and it was not infected at the time. Another Dr. said I would need to see a surgeon and yet a 3rd Dr., my current one says that I should avoid the surgery at all costs because it is a "very messy surgery".
It has never been to the point of taking to the Dr. when it is VERY infected, that has only happened twice and both times I used meditation and healing guided visualizatio imagery tapes that I use for general healing purposes (there are tapes/dvds by names such as Louise Hay, Dr. Bernie Seigal, and Dr. Andrew Weil as well as a host of others, with varying degrees of 'esoteric' ideas and teaching, the basic idea is to try and have the body do as much as it can for itself by simply taking the time and meditating on healing, it works WELL but doesn't cure everything)
Anyhow, from what I have read, I have been very very lucky. This current time has been the worse, I avoided the Dr. again hoping the swelling would go down, I forgot to mention hot baths and cleaning the area, putting rubbing alcolhol on it (don't let it drip down onto your butthole! OUCH!) and keeping it clean. I drained a little bit and the drainage causes the area to really ITCH, the alcohol helps this and also drys the skin.
This time it drained from the surface of the skin, just like a regular boil or HUGE pimple, I didn't notice the discharge or pus anywhere so I think it went down slowly with some drainage from the sinus and from the top opening. The top layers of skin would peel off and I think this was from the Rubbing Alcohol.
So, it is down again now and not painful. I hope this is the last time... Time will tell. I hope i never have to have it surgically removed but this time was the nearest I came to taking it to the Dr. for serious treatment. I'm glad I waitned, although I know it was infected and I did have a mild fever for a couple of days and didn't feel good, however I don't like to use antibotics as they make me feel bad for a couple of weeks and really mess up my whole digestive system...
Good luck to you, I hope you have as good luck as I did. Some other people's experiences are very horrifying. I am very thankful that my cyst has been fairly managable so far and from what I read here, I can hardly complain.
Date: January 22, 2007
Story1/22/07
My name is Kacie and this is my story. My whole issue with this disease started in December of 2003 when I was 13. I was babysitting some kids and they decided it would be a good idea to play horsie. So, two of them climb on my back while the other one for no particular reason (besides to make me go faster) starts ramming his head into the end of my tailbone. Since I was on all fours and had two kids on top of me, I ignored the pain until it became unbearable and yelled at the kid. They stopped and after a few minutes my tailbone had ceased it's infernal aching. Well, a few months later, I started having issues sitting on the bus and in my classrooms. After a few weeks of living with it, I looked in the mirror and saw this large, icky, gray bump right on the end of my tailbone. Naturally, being 13 and all, I flipped out. My mum took me to the doctor and it was immediately diagnosed as a polynidal cyst. The doc told me to bathe everyday with epson salt and keep it dry otherwise, else I'd have to get it surgically removed. Being thoroughly spooked by the word "surgically," I did what she said. When that didn't work, she recommended me to the worst surgeon I have ever had the displeasure of meeting. Unfortunately, I didn't know that at the time. So we went. He told me I needed to wash it with antibacterial soap and it would go away. As if. I'm telling you right, now: that stuff did the opposite of work. Anyways, we went back a few weeks later with the cyst looking terrible as ever and he scheduled my surgery for 3/10/2004.
So I had the surgery by the stupid surgeon and went home. A few DAYS later, after the stitches had been taken out, it opened. Right in the middle of school. There was blood EVERYWHERE. Soaked through my jeans and BOTH sides of the jacket I had tied around my waist. By this time, I was a complete mess. After TWO YEARS of dealing with the stupid surgeon, antibacterial soap, and prscriptions, with the thing still opened, we dumped him and went for a different guy. The moment he looked at my tailbone, which had most likely formed a new cyst, he told me surgery was the only option. I believed him and had my second surgery 4/16/06. Waiting two years was the biggest mistake of my life. Anyways, this guy was much better. He stitched it up in two layers, inside and outside. Well, that lasted about six months, the hole having opened about a month after the surgery. Eventually, I went back to my surgeon when I started hurting again. He told me I needed MORE surgery, so I went in for my THIRD on 11/17/06. Well, needless to say that this one lasted for an even shorter period of time. I just went to my surgeon today and he told me "it's back with a vengence" and I need even MORE surgery. This time, I was thinking about trying the surgery where the wound is left open. After reading these stories, I'm not looking forward to it, but maybe it'll last a while this time. I am now 16 and have been living with this disease for 3 years and have had 3 surgeries. I have not been able to do a lot of the things I would have liked to, but I just have to think that someday, I'll be better again. Maybe it's just my optimistic side shining through, but these stories have shown me that there is a life after Polonidal Cysts, and I intend to have one. Good luck to all who live with this. I feel your pain...literaly.
Date: January 19, 2007
StoryIt's me again. Ashley. The 13 year old girl. So anyways, when I said that I was probably going to get the surgery again in the near furture, I was right! Christmas was unbearable, and everyone made me get everything no matter what. I thought I would die! I couldn't even celebrate the new year by running around and going upstairs and everything. So anyways, on the first day of school at around two o'clock, we decided to go to the hospital. Yadda-yadda, they drain it a few hours later, I'm fully awake, ANYWAYS. I go back to the doctor and apperantly, it wasn't like, done and the doctor really didn't take everything out and I was wondering while I still felt pain after the surgery. So, I'm going back on Monday. Wish me luck. <3 And if any of you would like to chat on AIM, my screen name is PandasCanBiteToo
Date: January 17, 2007
StoryI survived! My first flare-up was 3 weeks after I got married. I had noticed a twinge in my tailbone area in previous years, but I just thought it was a bruised tailbone. After we got back from our exotic honeymoon, I felt it getting sore. Then the 3rd Sunday we were back, I woke up with SCREAMING pain. I went to church and sat uncomfortably in the pew and by the time I got home, I thought I was really dying! My new gramma-in-law had to drive me to the dr., and being in a new city, it was a walk-in clinic. They didn't care one bit how much pain I was in. They told me it was a pilonidal cyst, perscribed T3's and some antibiotics and sent me away. The T3's were the only pill that was helping! I was miserable for 3 more days, when I went back to have it lanced (after a long phone conversation with my family dr. from home. Another Dr. examined it, and said it was not ready to be lanced and sent me home for a few more days. I went back again and saw another Dr. He was concerned as the infection was not raising to the surface as most of the cysts are ready to drain after a day or 2. He perscribed very STRONG antibiotics which brought it under control but he advised me that it would need to be removed.
Afte the antibiotics got it under control, I just began to 'live with it' for about 1 year. I would have flare-ups once every 3-4 weeks but never ever was it the flat-out, pull out my hair, screaming flare-ups that the first one was like. And I would treat it with care, but never any more antibiotics as I was afraid that they wouldn't be effective when I really needed them.
In September of 2006, I began to feel the familiar twinges, but it was definately a little more urgent and painful this time. I went back to another Dr. who referred me to surgery. He had had a cancellation, so less than 4 weeks later, I was laying 'sunny side up' on the operating room table. I opted for sedation and don't remember a thing except them taping my butt cheeks apart. It was a closed incision surgery and I awoke in NO pain at all (thanks to the freezing)
The surgeon advised that all was well and he had removed it all. Since I am not a hairy person, he said that my chances of having a re-occurance was very slim.
Recovery was so much easier than I thought it would be. While uncomfortable, it was not really painful. I only used the percocet to sleep at night and maybe once in the day in the beginning.
I had a wonderful Christmas, worry free of a flare-up and I can now sit comfortably wherever I go and I am SO SO SO glad I did the surgery. GO AND DO IT IF YOU HAVEN'T YET! THe recovery is worth the pain of the flare-ups!
Date: January 16, 2007
StorySo I am a 19 year old girl who had 2 pilondial cysts removed already.. and probably having a third removed in the next 6 months.. The first time i had it removed I was about 17 was so embarassed to show my mom what it was.. But I want and saw a doctor that night a boom that big pimple popped.. At that age i really dont remember pain... But last year I started college and felt one coming for months.. so instead of goin on spring break with everyone else i went home to see a surgeon. After that most comfortable doctors vist ever she told me you do not have a pilonidal your just sitting on you ass too much... So i believed her till one day i was in the caf having dinner and the lunch lady said miss theres something all over the back of your sun dress... and my 2nd pilonidal had popped.. the surgery was soo easy i felt awesome with all the pain killers =)... ending up i wasnt fully better till exactly three months later.. my incision never wanted to close i lived at my surgeons every morning looking at it and not knowing what to doo... finally it closed in august b4 i started my sophmore year.. go home for thanksgiving cant even sit go see my favorite surgeon he pops it open... makes me happy... now for about 5 -6 days i have the worst pain in my back.. i know another one is there becuase it hurts to walk and even lay in bed... I HATE THIS FEELING.. i've seen 2 doctors in the tampa area that say since it hasnt hit the skin yet can not do anything for you... well my surgeon isnt to happy about that.. so im headin home to him any day now to probably have my 3 surgery in about 4 years.... but hey the end of the road should be coming soon correct.. everyone just smile because you really do have a pain in your ass :)
Date: January 11, 2007
StoryHi! My name is Derek (20 years old) and I've had pilonidal disease for a little over 3 years now. It all started when my ex g/f noticed a lump beginning to form above my buttcrack. She was very worried about it and had asked me numerous times to get it checked out and I refused (probably a reason for the breakup which is another story in its self). So after about a good solid year of having the cyst I had seen a Doctor who had just said it was just a regular cyst. My advice to you is to not keep seeing the Doctors who keep prescribing antibiotics...they are just wanting you to come back 2 times a month for your money, and if you feel that you just aren't getting straight answers from the doctors just call your state attourney's office and file a complaint...or have your lawyer contact the doctor and you will be refunded your money if you don't have insurance (trust me i was refunded over 1,200 for 6 doctor visits).
So basically the first doc i seen kept just saying it was a cyst and it would go away with antibiotics pills & powder.
NOT THE CASE GET SURGERY!
So the 2nd year wasn't that bad. I had a little small whole that was above my crack and it would get a small infection atleast once every 3 months. The 3rd year the hole healed up and I hadn't seen the cyst for a good 8 months. I had thought the cyst was over with, and it wouldn't come back. Well, come christmas I played a little football and immediately after playing football the cyst would come back. This time it had swelled up to the size of a medium size tomatoe. I then knew I had to see a surgeon. The pain this time was unbearable and it felt as if my arse was on fire. One night I couldn't sleep and I took the hottest shower of my life and the cyst had then popprf and the nasty foul brown fluid ran down my legs. The smell was foul enough to make a skunk yack. The cyst had drained and the next few days the cyst had gotten better. I had an appointment to go see a C/R Surgeon (Colon Rectal Surgeon). I was very nervous because I had no idea what to expect, and i was just hoping if i had to get naked that it would be infront of a girl MD (lucky she was very good looking asian lady...lucky she never had pilonidal disase). The surgeon immediately told me I had a pilonidal cyst and that it had to be removed immedietaly. So the following friday (1-5-07) I had a cystectomy.
SURGERY & FOLLOWING WEEK AFTER DETAILS
The Surgery wasn't as bad as I thought. I had a good week to freak myself out into thinking I was going to die in surgery. Well I'm still alive and the Surgery went very well. The surgery took a good 45 minutes. They knocked me out and began slicing and dicing my rear end. When I woke I immediately felt a small thrawbing pain where the cyst use to be. I went home and took advantage of the generic vicodin and slept most of the day off.
HERE COMES THE FUN PARTS!
so day 1 a nurse came to the house and the packing of the wound was to start. THIS IS THE WORST PART AFTER SURGERY!!!!!!!!!!!!!!! So the packing of the wound was unbearable...i remember cursing like there was no heaven or hell when the nurse took the packing out & put it back in. Today is day 6 of the after surgery and the packing hurt worst today then it has ever hurt before. I have noticed if you take a hot shower before you pack the gaus into the wound it doesn't hurt as bad. I'm very happy I went through with the surgery, and I advice that anyone with this problem should just go ahead and have a cystecetomy where they knock u out and u need a good repacking for 6-8 weeks.
DO NOT LET THIS DISEASE GET THE BEST OF YOU!!!
TAKE ADVANTAGE OF THE MEDICAL ADVANTAGES THAT THEY HAVE COME UP WITH FOR THIS DISEASE! DO NOT WASTE YOU TIME WITH STITCHING OR ANY OTHER PROCEDURES!!!
THERE IS PAIN AFTER THE SURGERY BUT BARE WITH IT AND BELIEVE THE SURGERY WILL WORK AND YOU'LL DO FINE! PLEASE DO NOT LET THIS DISEASE DEPRESS YOU AND RUN YOUR LIFE! GET THE SURGERY AND GET IT OVER WITH WHILE YOU ARE YOUNG! WHILE YOU CAN WITHSTAND THE PAIN!
Date: January 09, 2007
StorySeveral years ago I had an operation to remove a Pilonidal Cyst. I viewed these web sites and they almost convinced me to not have the operation. I felt relief the day after the operation, was sitting in a movie within a couple of days, and have not had a problem since. I encourage you to get a couple of opinions and if one is to surgically remove the darn thing...do it.
Date: January 06, 2007
StoryMY CYST WENT AWAY AFTER I BEGAN SHAVING, BATHING, AND USING ANTIBACTERIAL POWDER. READ ON FOR DETAILS....
Hello sufferers,
I discovered a pilonidal cyst about one year ago. It consisted of two large openings and several smaller ones that drained a yellow discharge. It was never particularly painful, but was uncomfortable and very stinky! The doctor diagnosed it and told me surgery was the only way to get rid of it. However, after doing some reading and taking matters into my own hands I managed to stop the infection, so that now there's no discharge, no smell, no lumps and no pain. All that're left are the holes. Here's what I did:
1. Shaved between my cheeks carefully every day, pulling the cheeks apart to ensure I got right in there. I shaved in a manner that ensured I wasnt sweeping the stubble into the holes.
2. Bathed the area twice a day.
3. Poured an antibacterial powder, designed to combat smelly feet, down the crack every day.
A few weeks after I began shaving the drainage became very much reduced and lost its smell completely. The cysts didnt go away completely, and in fact swelled up more than before. However, after about 3 months a big wad of hair ejected itself out of the holes. This happened several more times over the following months, and after the last time it happened the cysts disappeared, leaving only the holes, which I dont even notice. I've continued to shave and clean twice daily, and the cysts haven't come back (its been about 6 mo now).
I'm not sure which of the above treatments helped, if any. Maybe the cysts randomly disappeared and will be back, although I dont think so, since I noticed a change soon after starting. I think it may have been shaving - there's a good article about shaving by Armstrong and Barcia that you can find on the internet, called something like 'pilonidal disease - a conservative approach'. Its worth a read.
Anyway best of luck getting rid of the beast!
Jim
Date: January 05, 2007
StoryThere is hope!
I am a 26 year old female, and I had a closed excision surgery 6 weeks ago. I'm not sure when my problem started, maybe 3 or 4 years ago. I remember times when my tailbone felt very sore, and I couldn't lay on my back or sit certain ways. I just thought it was from an old soccer injury and that I had just aggravated it by sitting improperly. Then, in the first 10 months of 2006, I had 3 flare-ups that drove me to the doctor. I saw three different doctors (a different one for each flare-up) through a local free clinic for people without insurance. Thankfully, I only had to have one lancing. The first one was almost more than I could bear. I screamed nearly the entire time, and the doctor just told me that she'd had many grown men pass out from pain during the same procedure. Not exactly comforting, but at least it helped me feel a little less wimpy.
The lancing really did alleviate the pressure and pain, though. The next 2 times I went to the clinic for flare-ups, I begged them not to lance it, and they obliged. Nobody at the clinic ever used the word pilonidal, but at the general surgeon's office, the nurse told me that was what it was without even looking at it. She knew just from what I had said in under a minute, so I don't understand why it seems so many doctors don't tell their patients that it's a pilonidal.
My closed excision surgery went very well. I was awake, but whenever I felt any pain, I just told them and they gave me another shot of anisthetic. The general surgeon was very pleased with the results. It is still a bit sore at times...it's only been 6 weeks, but I definitely believe it was the right thing for me. I did not have a sinus, only a cyst, and it was pretty small. My incision was less than 2 inches. I bought a Tush Cush, and it makes sitting very comfortable, even for long periods of time. I did not have too much pain after surgery, and I only used the Vicodin for 3 days. The stitches were in 13 days, and they did not hurt at all when they came out.
I am hoping and praying that it never returns. The surgeon and nurses said there is no reason to believe that it will.
Date: January 04, 2007
StorySo my story is pretty much exactly the same as everyone else so I won't bore you with details. Basically, I was first diagnosed when I was 17 (I'm 23 now). From 2001-2003 I had 4 surgeries; 2 with stitches, 2 left open. None worked. It still flares up from time to time. I stuff a 4x4 gauze between my cheeks everyday, just so my underwear doesn't get stained. Anyways... there is some success in this boring story! I spent a few summers living at the beach where everyday I would swim in the ocean. I noticed that during those summers, I had no drainage, no pressure, no flare-ups! As soon as the summers ended and I was back to classes sitting for long periods of time, the horror of it all returned. Not to worry! I started buying natural sea salt from Trader Joe's. It's cheap and it comes in reasonably large packages. I TRY to take a bath every day (or at least once every couple days) with a handful of salt mixed in the water. So far, so good. Very few flare-ups, minimal drainage, and best of all... NO DOCTORS OR SURGERY!!! A few times, there was a small lump of grayish, hairy, nasty crap that appeared in the tub and after that, I felt a huge decrease in pressure. I'm assuming that's just some of the crud that gets caught up under the skin at the tailbone. I know everyone's condition is different, but give it a try. You don't have anything to lose. If it doesn't work for you, good luck! One day someone will come out with a breakthrough treatment that will zap these things for good!
Date: January 03, 2007
StorySo I can't even remember when it truly started. The one time I really remember it was being at a college basketball game and I went to the bathroom, wiped, and looked at the toilet paper and it was just bright red. I was pretty worried but I always had the mentality of I feel fine, just keep going. It would bleed a lot for like a couple days and then go away from months and months and come back. I couldn't sit certain ways comfortably. This went on for probably 3-4 years.
So then my little brother was diagnosed with Crohn's disease in July 2006. I knew basically what Crohn's affected and my little problem was getting me worried that I had crohn's. I looked at symptoms and one was fistulas, which look very similar to pilonidal cysts to people that know nothing about pilonidal cysts and fistulas. I was convinced I had crohn's and I finally told my mom about it, very embarrassing. We went to the doctor that day. First time I had heard of pilonidal cysts. My doctor actually had one himself, made me feel a lot better. He referred us to a general surgeon. When we called me, the general surgeon referred us to an anal/colon surgeon in his practice. We went to him, he told us how common my pilonidal cyst was. He told us how he wanted to take it out, he seemed very reliable.
To get another opinion we went to highly respected anal/colon surgeon at University of Illinois Chicago, mainly to discuss other methods of taking it out. He agreed with our other doctor that the best way for it is an open surgery option. Surgery was already scheduled, so we went with it.
So my surgery was at the end of July 2006. I will tell you that days 1-2 post op aren't bad at all. Then around day 3 it gets worse, and at day 7 it peaks it just being terrible. Changing the packing was painful. Vicodin becomes your best friend. At day 10 as my doctor already told me things will start getting better. At day 21 post op, I felt completely fine, I also started working out and playing tennis again. Then as I had been told, 8 weeks, everything was closed up and I was back to living completely normal.
In regards to packing, the first few times will be hard because you won't really know what you are doing. I definitely suggest having a family member or getting a home health nurse to do it for you, it will get done the best with someone else doing it.
Few final words. Don't be embarrassed. You will be, but remember, the doctors you go to see this more then you'd believe. My doctor told me how a big macho wrestler had one. It happens to a lot of people, and it is not that big of a deal. Just think to what it will be like to live without any worries about what color boxers you are going to wear that won't show blood stains, sitting on your couch however you want, and being able to live your life with one less thing to think about.
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