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Date: April 30, 2008
StoryHi, I'm a 27 year old Irish girl. Pilonidal sinus has been part of my life since I was 19. I first started experiencing discomfort in sitting up in bed. I was also on teaching practice for the first time and was under a lot of pressure. I felt like I had bruised my coccyx, from carrying a heavy bag on my back. It was only when I went to feel the area one day that I became concerned. There was a definite lump, and when I looked at it in the mirror, it was shiny and red.
I went to my GP who gave me the name pilonidal sinus, but I didn't really take it in. He prescribed antibiotics, but after a week, there was no improvement, and it had actually got bigger, more painful, and I was finding it incredibly difficult to walk. So I paid another visit to my GP. He gave me 2 choices - he could call an ambulance to take me to hospital for emergency surgery, or he could lance it there and then in the surgery. Needless to say I went for the second option!
The GP gave me a local anesthetic, which was almost more painful than the abscess! It also happened to be the first day of my period, and the doctor thought the abscess had burst when he saw the blood at first (cringe!!).
Anyway, the doctor proceeded to lance the abscess and drain out all the gunk. He also made the mistake of telling me to scream if I wanted - I howled like an animal - I'd say the patients in the waiting room were horrified! I fainted afterwards, but after a week of daily dressings by the GP, and salt baths, it seemed to have healed. I was referred to a surgeon who wanted to perform surgery.
So that summer, while all my friends went off to America to work, I was stuck at home going through the pain of the daily dressings for over 3 months- I think that's nearly worse than the pain of the abscess! And I was fine until about 6 months later, I fell on a dancefloor in a nightclub and landed smack bang on my arse! Immediately, I felt that familiar pain of the abscess return! And so, I had my second surgery. It was relatively minor compared to the first and was healed after about 2 months.
I was pilonidal sinus free then until last January. I had had tenderness during my period before, but when the abscess is there, you just know that old familiar pain! This time, it flared up in a matter of 3 days, and was pretty bad, again I couldn't walk. I ended up in accident and emergency, and had it lanced. The nurses dressing it told me it was deep enough - 5cm x 5cm in area. That healed after 2 months, but I was referred for further surgery last summer.
So on the 4th July last year, I underwent surgery for the 3rd time, and had to endure those awful dressings for a 5th time! I was unfortunate enough to suffer 2 nasty (and very smelly)infections during healing, but finally, after more than 3 months, I was healed!
I keep my fingers crossed that I'll never have to go through that pain ever again, though I must accept that it can come back at any time.
Date: April 25, 2008
StoryDan from sydney again. 2 weeks post closed surgery. Wound is open and need daily dressings. 6 more weeks off work. no sex in sight. Not in a good way to be posting latley. Sorry i dont have anything more positive.
Date: April 23, 2008
StoryHi,I'm a 14 years old, female and I just had surgery this morning for my pilonidal cyst. I had had my cyst for 3 years and I was too afraid to go to the docters and it got to a point that another much larger sinus had formed underneath the original! So since I didn't want it to get worse, I told my mom and we got an appointment.
This was my first surgery and I was expecting the worst of the worst, but it was absolutly great!!!! I was under general anestheia for about an hour and so I don't remember anything. Before going into surgery, my surgen said that she was going to do and open wound surgery but when I came out, she told me that she had put stitches in!! I don't have any pain at all and I got to skip school today which is great, and probably for the rest of the week!!!(YAY!) This web site and all of the stories in it have helped me sooo much!!!! So thank you! But if you are suffering from this dieses just remember: "It'll be OK in the end; if it's not OK, it's not the end!" Good luck to all :)
Date: April 21, 2008
StoryMy name is Sarah, I'm 24, and just had my second surgery for this disease. It's really depressing and my thoughts are with everyone else who is experiencing this problem. I live in San Francisco and was lucky enough to meet a surgeon, Dr. Sternberg, who performed the advanced "cleft lift" surgery on me. So far it's been ok - three weeks since surgery and I'm moving very well and back at work sitting during the day. I really think this surgery is the way to go for anyone with an advanced stage of the disease or with several failed surgeries.
Date: April 21, 2008
StoryI'm 4 months post "closure" and my wound just split.
It all started June 2005 when I had this horrible pain in my butt crack. I went to my PCP and he told me it was nothing to worry about. So I dealt with the pain until December during finals of my senior year of college at the University of Michigan. I was sitting down studying and I just got this overwhelming pain and I stood up and there was blood and puss all over my pants and the couch. I called my ex boyfriend (i lived with him for 2 years so he knew I had this condition) to come and look at it, because as we all know its not the easiest place to self-inspect. He looked at it and told me I should go to the university health services (UHS) first thing the next morning.
He helped clean me up and put me to bed. I went to UHS the following morning to be informed that it was a pilonidal cyst, that I had at least 8 tracts only one of which was infected, and the NP that I saw told me what to do. I went to my surgeon who removed my gallbladder and I was very comfortable with her, but I hated the hospital. That should have been my first clue not to go there. Her office was clean, but the bathroom was worse than any McDonald's restroom I've ever seen. But my insurance wasn't good and I had to stay at that hospital.
Since I was trying to graduate from college I couldn't have the surgery immediately and I knew I had to wait until May. She lanced it and found a sinus that was 2 inches deep. We were hoping with a good course of antibiotics, lancing, and packing that it would heal and I'd be fine. But no, that's not my luck. Every two weeks (3 days after my antibiotic course finished) It'd come back with avengence. So I had it lanced twice a month until my surgery. At the time of surgery they sampled the tissue and it didn't *seem* to be actively infected. Also, my insurance didn't cover an open surgery, so they sutured it closed. As if the surgery wasn't bad enough, when I came through there weren't enough beds post-op so I was put on the maternity floor and moved around all night. It was horrid.
Finally, I went home with my parents ( a total shocker from living away for 4 years). When it came time to change my dressing my new boyfriend (of only 2 months at the time!) and my mom stood over me as they removed the dressing. My mom looked at Ryan (my bf) and said "I can't handle this, you deal with her" and snapped off her plastic gloves. It was doing well for a few days and so I finally was able to leave home and go back to my apartment... which didn't have air conditioning. I don't know if it was the sweat or what that caused it, but soon it started to puss like crazy. I went back to the surgeon and they had to open the lower half of the wound. That started to heal but the top half then got bad, so the top then was opened. It was HELL. And I had to move home with my parents for the summer, which well, was interesting.
No doubt the most embarrassing moment of my life was when I was at Ryan's while he was re-packing my wound, I was on my period, and my ass was bleeding from my hemorrhoids. I was crying on his bathroom floor and he still told me I was beautiful, and not in that you need to hear it kind of voice.
We finally purchased a "tush cush" as this site recommends. IT MADE SUCH A DIFFERENCE, at least for the pain. So I definitely recommend it. But by august my wound was still infected and I had to move to Baltimore for graduate school.
So I did. I moved here, all alone, no one I knew with this horrid wound. I got hooked up with the Hopkins system and immediately got the medical care I should have had all along. It quickly surfaced that my surgeon never tested the bacteria post-op, so I was being treated with antibiotics that weren't effective. I ended up getting MRSA and Strept B infections in the wound that took 4 months to kick. I was finally directed to a wound center at Hopkins which was the best experience of my life. They were so kind and knew exactly what to do. They saved my life. They also found out that the infection had gone down to the bone originally and one of the reasons it was so hard to heal was that it was never treated properly and getting rid of infections in the bone is incredibly hard. After MANY different antibiotics (and allergic reactions to some) I was on a steady course of antibiotics for a month and started to completely heal over.
I had a lowgrade fever for those 8 months and never felt human. These things should not be taken lightly. I have practically no memory of what happened for my first semester of graduate school. I'm surprised I didn't drop out. But fevers like that can really affect your memory, so ensure that you are given correct treatment and fever reducers.
It healed over completely in December. IT was wonderful to be able to fully shower again (I couldn't because I had to go see a nurse for my changings). Also it was great not to have gauze in my butt crack. Unfortunately Part of the wound just split open. Luckily its not in the *trouble* spot, where the deep sinus was. Its just an inch long and about 2mm wide. I spent so much money on health care that I just don't want to go to the doctors again because I'm still trying to pay it all off. But I've learned a lot about this disease and what needs to be done so here's my advice:
1- HAVE THE INFECTION CULTURED! Ensure that you get put on antibiotics that will treat the specific infection. And if it comes back, have it continually cultured because bacteria will change.
2- If you are like me and had chronic infections, TAKE your temperature at minimum of 3 times a day and CONTINUALLY take motrin or tylenol to reduce your fever. It is important to tell the doctor you have a fever, but more important to keep that down. Sometimes you want to go in with a fever so they know how bad it is... but document it so you can tell if you're improving, etc.
3- GET A TUSH CUSH. it will make the whole experience SOOO MUCH BETTER. And not one of those inner tube things.
4- if you don't think your getting good treatment, PUSH. You diserve it.
5- SEEK a wound clinic, whether or not your insurance covers it. Because it is 100% worth it.
Good luck to everyone!
Date: April 20, 2008
StoryHi, Im a tweleve year old girl
ive been suffering with these for three years, i got one in year 4 but i took flucloxacillin capsules and it went away.
last year i got another one, after going to a spinning class. i had an operation on it in august last year, where it was drained in theatre. it was the packed and dressed for 5 weeks. the wound has turned into a kindof purple blister, which swelled up and then popped, and fat was coming out. i went to the doctors, who has perscribed me with flucloxacillin capsules again. i was off school for three days, and now i have to take a pillow in to sit on, as the cyst is on the base of my spine. i am now on flucloxacillin for two weeks, to see if it clears up, but if not i may have to go back into theatre again. i was just looking on this site for some info!
Date: April 19, 2008
StoryHello, I have been reading about your experiences on Pilondial support information. I had this about 6 years ago and after a course of antibiotics it went away but left like a hole there,is this normal? My doctor at the time said it will probably come back and if it does then i would need surgery. Because of thsi i always ensure i keep the area clean, wheni shower i ensure no loose hairs from washing my hair have got caught.
But 6 Years later i have it back its been sore for about a week iknew the feeling and whatit was going to be and i was too scared to go to the doc's as i thought he would make me have that dreaded op that ive heard about, theres only a small lump there but its quite painful so i took the bull by the horns and went to the doc's anyway. Fortunatly its a new gp and he gave me some more antibiotics, but did say if it gets worse go to A&E and they will have to operate but try to avoid it due to the long healing process. This was yesterday so im hoping it will get rid of it for the time being. Im desperate to find something to avoid this happening again as im such a woos and really want to avoid this op if i can.
Date: April 18, 2008
StoryHi, I am a 27 year old woman from Canada. I have had this problem since 2006. I went to Emergency and they drained the area. But I always felt something there even when it was healed. So I went to a specialist and he said that he could see three dots. So, I decided to get this done before it started to flare up and before starting a family. I am on my twelth week and the incision is still open. I am now at 0.3 deep. Yeah!!!!! I got an infection 2 weeks ago and that didn't help the situation. I never knew there was such a site for us patients.
The nurse has been changing mine every two days with a product called Sylvercell. I guess it's best if it stays in for 48 hours. It's seems to contradict everything from this website. I think I'm going to start changing the bandage every day. :)
I just wanted to let Canadians know out there that Shoppers Home Health Store has the "tush cush" which is very good for our condition. I just found out about the tush cush through this site and now I have found one in Ottawa, ON. I can't wait to get it. :)
Thank you for this site,
Cherylene Fitzsimons
Morewood, ON
Date: April 18, 2008
StoryI'm a 26-year-old female who had the surgery a week ago... I was diagnosed with the disease last fall after feeling what I thought was a pimple back there. My husband investigated and said no pimple, but there are two little holes leaking a tiny amount of fluid. I was never in great pain and never had anything more than the teensiest leakage but knowing that there was always a possibility of a huge, debilitating flare-up, I opted to get the surgery now while I'm young & healthy to just take care of it already.
I went into surgery at Kaiser and they put me in a little room where I dressed in the hospital garb of an open-back gown and booties for my feet. They put an IV in my left hand and I'll admit, this is the part that hurt the most the whole day! I'm a wuss. Then they put some Valium in my system and gave me a spinal block (they injected numbing stuff down my spine so my whole lower half was numbed up). The spinal block didn't hurt at all thanks to the Valium. My whole surgery was 11 minutes and I was awake the whole time but babbling like an idiot. The only thing I distinctly remember was asking the surgeon if my husband and I could have some jacuzzi tub action in a couple of weeks for our anniversary and he said yes. That's right, I asked about having "relations" on the operating table. The post-op appt is going to be embarrassing.
During the surgery prep time and the surgery itself, I felt pretty dang pampered. I got a blanket of hot air before the IV insertion to increase my circulation since I was cold, my husband got to see me a few minutes before surgery, and there were plenty of nurses at hand to make sure I was doing OK. Then I was wheeled into a recovery room with two old ladies who were also just out of surgery and they were cranky beyond belief and really rude and demanding of the nurses. Totally killed my Valium high hearing one of them use the bedpan (we were under orders to not drink anything a couple of hours before surgery and we had to go to the bathroom right before undressing to avoid having to use the bedpan right after surgery so serves her right that she peed all over her bed) and the other one whining for ice chips (note to lady: see the thing in your hand? It's an IV and it's HYDRATING you even if your mouth is dry so chill already).
Thankfully I was wheeled away from the cranky ladies to another recovery room where my husband was waiting for me. It was only supposed to take around two hours for the spinal block to wear off but it ended up taking over six hours. That really sucked. The nurse who discharged me made me prove to her that I could A. stand and walk, which I stubbornly did still partially numb, and B. pee, which I had to wait until I was 100% un-numb to do anyway so my charade with the walking was unnecessary. My sweet husband was by my side the whole time even though he didn't eat all day either. I told him he could go get food but he wanted to stay with me. :)
I had surgery on Monday and now it's Friday and I'm finally able to sit down at the computer again. I was on vicodin the first two days and then took myself off cold-turkey. The pain's not too bad; it's mostly about finding the right position to sleep and relax in. I ate in Jabba-the-Hutt position on the couch all week and slept on my back the first night, and my back and side the other nights. I've got a closed incision and it's healing nicely. I'm keeping it clean with baby wipes and lots of showers and I'm wearing 100% cotton underwear for breathability. Overall, things are going fine. I recommend that everyone who can should get this taken care of on your own time rather than waiting for the big ugly flare-up that results in a huge open wound and a longer recovery time.
Date: April 16, 2008
Story*Long post warning* I am a 28 yr old male and have been living with my cyst for about 8 years or so. I first noticed the issue in college and found blood in my underwear and discovered a nasty little sore at the very top of the crack. Not knowing what was up I basically ignored it. Then one night I had a full on eruption with lots of pain and blood and pus everywhere (through my underwear, through my jeans, stained couch at my girlfriend's parents' house, YIKES!).
I went to the emergency room and the doctors diagnosed the problem as a cyst and told me they wanted to lance and pack it. They injected the site around the cyst with pain killers and then cut me. Afterwards, they gave me some painkiller pills, an appointment with a surgeon, and sent me home. I went to see this surgeon, who looked like Col. Sanders, and he told me I 1.) needed to shave the whole area including my upper back and 2.) needed surgery asap.
That summer while at my parents home I went a saw my family physician who was aghast that no one to this point had given me a script for antibiotics! He gave me an appt. with a local surgeon and got me some antibiotics. In the days before my appt. with this new surgeon the cyst went down and the pain tapered off. The new surgeon (who had some experience both with these cysts and performing the surgeries associated with them) took a look at me and said I should continue on the antibiotics, shaving was not necessary until I began not responding to antibiotics, and surgery was not immediately necessary. Essentially a lets wait and see approach. He said I should keep the area clean and that I should be diligent about showering after all haircuts and if it flares up I should get some antibiotics and take warm baths.
Several months after coming off the antibiotics I was cleaning up down there and noticed a lose hair - I pinched it and to my surprise I pulled out from the cyst a long, stinky, blood and puss covered bundle of hair. Since that time over 7 years ago I have no had any major problems. About twice a year I have minor underwear "spotting" usually after especially aggressive cleanings following major haircuts. I don't know if my physical condition has lead to this improvement - I lost about 30 lbs since my initial flare up and while I am still slightly sedentary, I do get out and walk or exercise at least a few times a week.
Most of the time my cyst chills like a scabbed over wound - if this scab gets rubbed off then I bleed a little (so little it is only noticeable if I wear light colored underwear). There is a small bump in the area now that is rarely tender. I've been on long car trips and long flights (8+ plus = long) with little or no discomfort. My current doctor has taken the approach that if I experience a lot of drainage then he will get me some antibiotics, other than that I am unaware of it. I feel very fortunate reading some of these posts and especially since I think the initial care I got for the condition was medically reprehensible. So I guess my personal advice is to those who are first discovering that they may have a cyst - get a second opinion and get educated. Many doctors are not overly familiar with this condition and some will just go to their school textbooks and come back with "lets do this particularly invasive surgery that I have seen preformed (if your lucky) but have not actually done." Please try and find yourself a doctor who has more than a passing familiarity with these cysts. It seems to me that these cysts are very rarely (if ever) life threating so it pays to take your time (even if you are feeling embarrassed and just want it to go away ASAP)and get the quality medical care you deserve Good luck to all of you.
Date: April 15, 2008
StoryI'm a 47 y/o caucasian male. Now in an office job sitting a lot but live an active lifestyle. This is more of a question than a story. I am suffering all the problems everybody here has described; the swelling, pain, immobility, burts cyst with horrifying stench, reoccurrence. Repeatedly driving for hours as is required fro my work and family really causes it to flare up again. I had several times where the cyst drained by itself and I thought had resolved itself. NOT
My latest recurrence was last week after multiple trips driving for hours. It finally burst day before yesterday.
My problem is that the cyst is only about 1-2 cm from my rectum and has a hard knot about 3-4cm above my rectum. I have a couple weak spots in the surrounding tissue which I thought was good as it helps the cyst drain itself. Now the hard knots and location scare the devil out of me. You guys have scared the heck out of me too as to surgery type, pain and the packing trauma. Not to mention the possibility of recurring unsuccessful surgeries and being out of work for weeks.
Has anybody had one that close to their rectum and what method was used?
Date: April 15, 2008
StorySo I can make my post fairly short. I am a 20 year old college student experiencing my first pilo. For about two years I have had this cyst above my crack and I thought nothing of it since I have about 10 or so in other places on my body. Two days ago at work while lifting a few speakers I noticed that this cyst was hurting worse and swelling. Since I work as a theatre technician and I am in finals week I really cannot afford to go into surgery right now. I woke up this morning to realize I have started draining and the pain is almost unbearable. I also noticed that unlike the other stories I have 2 sinuses. Does anyone have suggestions to keep the pain down so I can manage for a week or so to get my show started and most importantly be able to focus on my finals? Also I read about someone thinking quitting smoking effected this, I just started smoking againg after having quit for a year. Just thought I would mention it in case someone else can relate.
Please e-mail me at corrugated12@gmail.com
Thank you
dustin
Date: April 14, 2008
StoryGreetings fellow pilo victims. Mine is a long, 36 year, story with a happy ending.
It started in 1972 after a fall on the tailbone. It swelled with infection, became very painful and forced me to a university medical clinic. I was referred on an emergency basis to a local Doctor who lanced it. The pain of the lancing was horrible as many have stated in this forum. But the pain relief was even greater. I do not know what happend as I was on the table on my stomach but I do know the older nurse assisting the Doctor fainted. Hmmmmm.
All was great for almost a year. Then the pain returned as did the drainage. I toughed it out for a few months until I could not take it any more. A pilonidal specialist saw me, advised surgery, and I had the "closed" surgery method in 1973.
Unfortunately it healed over on the top but he did not get all of the infection below. Three months later it burst out and started a big time drain. The Doctors (there were two working on me) tried various cleansers such as hydrogen peroxide and silver nitrate. But it refused to heal.
In 1974 I had the "open" procedure done. It took forever to heal but it did after six months. And life was good again. Until the early 1980s. The all too familar soreness showed up again! I could not believe it. After three procedures it was back? I was angry, sad, mad, and generally very, very frustrated.
This time I decided the Doctors had three chances and failed three times so I would learn to "live with it." For a quarter of a century it drained off an on. I could live a fine life but I knew I was risking a bigger infection by not treating it. I tried every home remedy one could think of and some that were crazy based on nothing but desperation.
I stopped wearing light colored slacks or shorts for fear of spotting. I avoided pools and hot tubs out of respect for others. And I hoped that a female partner in an intimate moment would not discover my problem. And the years rolled past.
Finally, in 2006 my family Doctor said I have better get it corrected or I was running a big risk in my late middle age years. I was 53 at the time of this advice and had battled it for 34 years. I recounted the pain and the suffering of my previous three operations. I did not want to go through that again. And all three had failed. Was I crazy to even think of trying another operation?
Then he said that a Doctor had perfected a new surgical treatment with great results. The Doctor and his son lived in my city, Eugene, Oregon. I knew their family, his Mother had been a previous Mayor of the city. I decided to visit him.
Convinced by their approach I overcame my fear and reluctence and said "yes" to operation #4.
The operation, the "cleft lift" procedure, was performed by Doctor Bascom on March 5 2007.
A year later the results are 100% perfect! No pain. No discomfort! No drainage! No "living with it." Best of all the procedure was painless. I did not even take an aspirin. I was out of the hospital in less than 24 hours and recovered at home. I slept in bed, laid on the couch and had fun reading books and watching movies.
The past year has been the best for my pilo area in my last 36 years. I have golfed to an 8 handicap, backpacked in three states, traveled for work in five hours drives, and needed to cushions or pain relievers. I feel cured!
So, for all of those out there that are younger than I, and fighting this thing for the first or second or third or fourth time, keep up the hope. It can be resolved with little cost and almost no pain. You do not need to live with this your entire life. And there is zero reason to fear the procedure I had.
If you would like to chat about my experience send an email to the administrator and they will know how to find me.
Keep your hopes up. There is a solution out there waiting just for you.
Stan B.
Date: April 09, 2008
Storyhey whatsup im a 21 y.o male and i just had surgery today. My story started at birth when the doctor told my parent i had a bump but it was nothing to worry about and keep an eye on it. When i turned 19 i noticed it had gotten bigger but still not painful. Suddenly two weeks ago the pain was unbearable. I went to the er and had it lanced under local ( WORST PAIN EVER ). i decided on the surgery. Had the surgery with general and got a script for 40 percocet. Ill keep you updated. From what ive been through and read, i would suggest the surgery because god knows i dont want to go through the original pain again.
Date: April 08, 2008
StoryHello Everybody.... I am writing from Mexico, just a brief note to inform you all about my personal experience.
I had the surgery yesterday in the morning, I had no pain at all throughout the whole procedure (it was a complete excision, with a closed wound, they used the cleft lift procedure)
I had to stay one night at the hopital just for my own comfort. Now I am at home, sitting at a regular chair, with no pain at all. I will stay home fot 2 or 3 more days, then back to work. In one more month I will be back to all my regular exercise activities.
I really recomend you to get the surgery, and if you live in Mexico and you are seeking for advice please dont hesitate to contact me: juvejls@hotmail.com
Date: April 06, 2008
StoryBefore February 2007, I had never heard of Pilonidal Disease. Out of nowhere, something had grown at the top of my butt crack and it was extremely painful for me to sit, bend, or do anything for that matter. I felt the bump and had no idea what it was. As it got later in the week, the bump got much bigger-- and the pain much worse. I remember trying not to complain about the pain because I thought, "people are going to think I am making a big deal out of nothing..." but the pain was so bad that I cried often from it.
My mother finally made me go to the doctor. My doctor told me I had something called a Pilonidal Cyst and it was a birth defect. I didn't really understand-- but he told me that I would have to come in and get it drained and then, eventually, have it removed otherwise it would flare back up.
I went within a couple of days to get the cyst drained-- needless to say, most of the nurses had some kind of butt joke for me. After that, I was refered to a surgeon to keep an eye on the cyst after the draining and to start planning for my surgery.
I opted for surgery in May of 2007, 2 days after my 20th birthday. The doctor told me after the surgery that he had actually found 3 cysts. The recovery was quite painful for me. You don't realize how much you use that part of your body until it is excruciatingly painful to use it. I could not work for 2 weeks and was told to not lift anything heavier than a milk carton. I was quite surprised because I didn't realize it was that major of a surgery.
Now, it's April 2008 and I still have complications. I have what I believe is another flare up-- I have not been to the doctor to confirm. From the surgery I had last May, if I sit too long on the floor, my lower back begins hurting real bad. Also, I get a pretty frequent stabbing pain where my incision was made.
Date: April 06, 2008
Storyday 4 from dan in sydney. Well i missed day 3,,,,,in my optimism went for a 30 min walk that ended in a screaming crawl to my door. Way to much way to soon. Now the long acting anestetic has worn off and im feeling every bit of the surgery. wont be far from the couch today.
Date: April 06, 2008
StoryHello,
I am a 35 year old women (US, TN) that has dealt with the Pilonidal Nightmare since age 15 years of age in 10th grade. My Mom told me it was a boil and to soak in Epsom Salt I did this and also used an OTC med called boil eze for years at the on-site of a breakout. Needless to say I was ashame of the issues I was having so I never complained to anyone.
In 2000 I was told what I had (Piondal Disease) and given very poor info on how to deal with it. I used Nair to keep the hair out of the area (unreachable for shaving in my case. I have had several outbreaks during that time leaving a very LARGE (silver dollar sized) and hard Core and a very shameful scar in the area. My latest out break was the worst ever. I finally told my PCP what I was dealing with and she performed a drainage procedure in her office. It hurt worst then giving birth to my child.
So I finally consulted a Surgeon in March 2008 to get my options only because my daughter forced me to do so. He informed me that I allowed it to stay too long and should get the surgery. March 28, 2008 I received surgery and was left with a 2 1/2 inch deep an 3 3/4 in wide open wound that exposed my tailbone. Healing from the inside out! Needless to say the packing has already become a pain in the U know what.
My 14 years daughter nearly passed out on the first packing.
My wound is currently being cared for by my Bestfriend that I never knew cared so much for me and my daughter (who takes a pix daily of the progress)
Monday a Nurse will begin to come out once a day to give them a break. Still off work not looking good going back prior to the 6-8 weeks timeframe. I'm tired of sleeping on my stomach. First attempt at sleeping without the Lortabs perscribed it is now 3:45am. In a lot of pain but maintaining. I do not think that I will ever do surgery again single parents make sure you can set up after care for this procedure.
Please if you have any of the symptoms listed run as fast as you can to get your options.
Date: April 05, 2008
StoryHello, everyone. Up until a few hours ago, I'd never heard of Pilonidal Disease, much less thought I had a disease at all. You can imagine what a shock it was to find a website which described my problems to a T.
In early 1999, I noticed a small, hard lump at the very top of my butt crack. It didn't hurt and wasn't very large, so I just left it alone thinking it would go away.
Later that year, I found myself 6 months pregnant with my first (and only) child. I had just quit smoking (which my brother theorized may have contributed to the cyst flaring up the way it did)...and before I knew it, I was unable to lie on my back or sit down without leaning forward. The bump which had previously been tiny and insignificant was now larger than a quarter, swollen, and extremely painful. My boyfriend tried making a small hole in the hopes of draining it to provide me with some relief, but his attempts were futile as ANY pressure on it caused me to tear up.
I dealt with it for about a week, waiting for my visit with my OBGYN. Once there, I informed her of the problem and she referred me to the adjoining suite, the office of a general practitioner. He was able to squeeze me in that day. He injected a local into the area (which hurt like hell), then completely excised the cyst. He packed it with a thin (LONG!) strip of gauze, bandaged me up, and I was on my way. He provided a prescription for Tylenol 3 with Codeine, but I've never been much for strong pain killers...seeing as how I was 6 months pregnant and the pain was manageable without meds, I didn't take the chance. Over the next few weeks, my boyfriend took good care of me, redressing the wound every single day. It healed up quickly, but left a LOT of scar tissue.
That was nearly 9 years ago. Now I think I may be faced with another. Last night I noticed pain in my tail bone region again, so I decided to check. And sure enough, there was some kind of pus-filled sac forming ON TOP of my scar tissue from the previous excision. I don't know how this is possible, but it's there. My husband (the same guy who helped me with this all those years ago), looked it over for me and managed to remove a small piece of skin and drain the area. Then we used some tea tree oil and gauze to dress the area. I'm hoping the draining and tea tree oil will rid me of this second nuisance, but I'm not overly optimistic. The pain has subsided a bit, but I know all too well how quickly these things can turn on you. As far as horror stories go, mine isn't all that terrible, but anyone who's dealt with Pilonidal cysts knows that even ONE can be a traumatizing experience. The fact that I may have another is almost too much.
Date: April 04, 2008
StoryWell its day 2 for Dan in Sydney. Ive woken a bit sore and again its the movement that sends me scratching at the walls. Still only working with panadiene forte and im getting about ok untill i bend over or squat down. The boifriend is out getting some dressings because in my haze of leaving hospital i didnt get enough. For those about to go for surgery i want you to know it isnt allways a horror story. Take in 'ALL' the advice from this site.
Date: April 04, 2008
StoryHey, Finn from New Zealand.
My story isn't a nice one, nor does it have an ending...
It started for me in early 2005, unbeknown to me i started to find blood patches on my boxer shorts on the back which was a bit of a shock.
So i carried on not telling anyone thinking that the problem would heal up and that'd be the end of it. Boy o' boy was i wrong.
At the end of 2005 as i was just entering into exam studies i began to feel pain when sitting and realized that this wasn't good. One quick trip to the Dr's and i new what it was. A Pilonidal sinus big enough to fit a small truck, (i think were the dr's exact words). So after exams in Dec, 2005 i had the a Karydakis operation. 6 weeks healing time i think were the estimates for a young man such as myself.
OPERATION NUMBER ONE
About three days after the operation i started to feel a sharp pain from the wound site and my mother noticed it was looking very red. Turns out i was on the receiving end of a in-operation infection. Resulting in the stitches blowing out and it turning into an open wound to heal from the bottom up. With the added infection i was on antibiotics and was told that it should heal in time for my university studies. So off to university in Feb, 2006 and still sporting a open wound on my tailbone. After about a month or so of normal university life, with the sinus getting dressed everyday and looking smaller and smaller, i started to notice an immense swelling of one of my buttock cheeks just to the left of the wound... Off to the campus Dr's and within a few hours i was in hospital having another operation leaving an open wound to heal up.
OPERATION NUMBER TWO
Continuing on my daily routine that i was very much used to for a while until October 2006, when once again i noticed a inflamed buttock next to the wound site.
OPERATION NUMBER THREE
Heres when it gets fun!
Over the next year i have daily dressing changes and begin to see the wound care specialist at the hospital as a result of the wound just not healing. So after trying everything in the book, and some that wern't, i began to loose a fair bit of hope that this would ever end.
Then in November 2007 i began having some problems with boils on my buttocks, mainly on the side that the wound was towards. This brought me to the Dr's again to find out what was going on. They seemed to believe that the boils were actually tracts from the wound that hadn't been removed in the previous operations. And yes you guessed it...
OPERATION NUMBER FOUR
Now the operation wasn't as major as previously but it still warranted general anesthetic. The site was within 5 cm of the still open would from the OCT, 06 operation, and healed within a few weeks. Leaving me still with the open wound from OCT, 06. Still having dressing changes everyday the wound care specialist began to think this would never end and called through to the hospital asking about a pilonidal specialist. The wound care specialist said that she has no idea why it isn't healing, as blood tests show I'm healthy, my diet is fine, and physical fitness is as good as it can be considering i have had limited allowance for exercise.
Now in 2008 i began to see a pilonidal specialist who thought of the option of having plastic surgery as either a skin graft, or a more extensive operation similar to the first, second of third of my own.
I find out on the 15th of April what is going to happen, so heres hoping the 5th operation may be the last!!
Hope I'm a one off and no one else has to go through this!
Date: April 04, 2008
StoryFirstly thankyou to all that have contributed to this website. it has been invaluable to me.
This is day 1 post surgery for me. I remember nothing of the surgery after a general anesthetic. It was difficult to go through with it as I wasnt experiencing any symptoms at the time and the thought of being cut open was truly scary.
The pain was there but well managed in an overnight stay in hospital(recomended) Would not of been a pleasant experience without endone tablets and morphine injection.
My boyfriend came and took me home by taxi again not an experience to do on your own.
Im only on panadeine forte and although im sore its more the movement that gets me.
lets see how tomorrow goes
Date: April 03, 2008
StoryI have had the pilonidal disease for about 3-4 years. As all of you know, this is a terrible and painful ordeal to go through. After months of pain, I finally went to the doctor to see about having this thing lanced or cleaned out. The procedure is something that I would not wish on anyone.
It only took about 30-40 minutes with a local. After the surgery, my girlfriend who is now my wife took care of me every single day for four months. After two days, I was back at work, but the healing period was overwhelming in the fact that the tasks were too much to handle. Some people have small or minor cysts or fare-ups, mine was about the size of a silver dollar.
The point of this reference is that you should not wait. Take care of your problem now or belive me, you will suffer greatly as I did. Four months is a long time to pack and re-package a wound, day in and day out. I could not lead a normal life for about 2 months. After three months, the hole got smaller and smaller until the wound just closed up on its own. the doctor told me that it may never come back again and its been 6 months with no problem at all. Hope this helps and make sure you take action now to prevent future strain on yourself.
Date: April 03, 2008
StoryHello all, this is my story to date and I hope somebody finds it helpful in their struggle with this disease. I was initially diagnosed several years ago in 2000 or 2001 (I was 26 or 27 at the time. Although my doctor recommended I visit a surgeon at the time I decided to deal with it without surgery. That was relatively
successful for years, I had periodic flare ups which usually drained on there own and I managed with hygiene and hair control which I got better at with time. However, I believe that with each infection the cyst tunneled a bit more and probably got deeper.
This winter I got three nasty flare ups over a four month period and finally decided that the tunneling had probably made the cyst unmanageable without surgical intervention. I saw a colon/rectal surgeon and scheduled surgery for a month later.
Well today I underwent an exicsion with a primary closure (luckily my tract was all on the midline and fairly short in length but a bit deep in some parts). I came out of general anestesia immediately after surgery and felt great, no naseua and no pain at all. The surgeon cautioned my to take my persrcibed percocept every few hours and not to wait for the pain before taking it which I have thus far followed. I know there are a lot of people who suffer greatly with this desiease and repeated return of a sinus tract. I also know that my recovery period is just now beginning and that only time will tell how succesfull this surgery was. I hope I don't have infection or the wound opens up. But I want to tell you folks that are sufferering from this disease that I wish I had dealt with this more directly years ago. I am a
very active person (which is primarily what made me shy away from surgery all those years) and can't help but think that earlier intervention would have been more helpful.
So far everything is going good. I will update with time if you all are interested in my recovery. God Bless and good luck with your disease!
Date: April 02, 2008
StoryI am a 26 year old female. I had my first experience with the lovely world of pilonidal cysts back in 1999 at the beginning of my senior year of high school. I began feeling this random pain at the base of my tailbone, and as the days went on the pain got worse and a lump developed. I saw my doctor and he gave me antibiotics & a referal for a surgeon should the antibiotics not work. Well, they didn't work, so the surgeon soon got a call from me.
That first surgery was SUCH a walk in the park. As the surgeon put it, it was not quite surgery, but not quite a simple lancing. It was somewhere in between. I was awake, though numbed, and the procedure only took about 15 minutes. I was stitched up & sent home with some pain medication, thinking that it was over.
WRONG!!
About a year later I started to experience pain again. I brushed it off as just being an irritation around the scar tissue, but then it began to swell. My insurance provider had changed as I was now in college, so I saw a new doctor, who referred me to a new surgeon, who checked me out & then laughed at what the previous surgeon had done, stating that he had pretty much set me up for a
recurrence. She performed surgery on me shortly after, going a good deal deeper and being sure to remove as much of the problem area as possible. She then stitched me up and sent me on my way.
About 6 months went by, and I began having issues again. This time the doctor decided to perform the surgery and leave the wound open, allowing it to heal from the inside out. And I must say, recovery for this was not as bad as I'd expected. I missed about 3 days of classes, about a week of work, and about 2 weeks of the dance classes that I teach. But other than that, everything seemed to go fine. The pain medication seemed to manage the pain just fine, and the pain subsided after a few days. Really the only issue was the daily packings. I still lived with my parents at the time, and every day before work I'd have to ask my mom to come into the bathroom and help "change me", until I got the hang of it myself. Once my mom had to stay at my sister's to babysit and I had to have my dad drive me over there just to have good ol' mom change my packing. So THAT aspect was a little depressing......I HATE having to feel that dependant on other people!
So now it has been about 6 or 7 years. Since then I'd get the occaisional pain on my tailbone, usually from sitting too long, either at work or while driving. Unfortunately, I seem to be getting the pain again, only worse this time, and without what seems to be cause. I haven't gone on any long road trips and I make sure to get up and move around a lot at work. Hence why I discovered this website - I am nervous that, after all this peace, that my pilonidal nemesis has come back to cause more mayhem in my life! I guess that I can only keep my fingers crossed!
Date: April 02, 2008
StoryHi, I am a 32 year old female that has been living with a
pilonidal cyst for about 10 years. The first time I had a flare up, I had no idea what was happening. I thought it was a back ache but one night I was checking out my backside in the mirror and noticed a very small pimple. I picked at it and with added pressure the site started draining. I was horrified at the color and smell of this stuff oozing from my flesh. My first response was, "Oh no, I am leaking spinal fluid!" LOL.
I forgot about it and did not have another flare up until a few years later when I was pregnant with my second child. I still wasn't aware of what this was nor did I ask my doctor. I assumed it was just some kind of boil or something. I guess I was too embarrassed to discuss it with anyone.
The flare up came and went for the next couple of years and I finally asked my primary doctor about it. He told me what it was but also gave me a horror story about having surgery. I again just forgot about it because there was no way I could be laid up for any long amount of time when I had three kids to take care of.
Well, about 2 weeks ago I got the worst flare up ever. I was in so much pain, and there was so much pressure, I went to a general surgeon. He put me on antibiotics and vicodin for pain and scheduled my surgery for tomorrow. The site would not drain and has become very tender and very painful. It started to drain, finally, this morning. I am very worried about the surgery tomorrow but I am glad my mom found this site for me. It has given me some really good info and I feel a little better knowing what to expect. I am sure everything will go well, I am just really nervous about it! Thanks for listening and I will post more when I get home from the hospital!
Date: April 01, 2008
StoryI'm a 21 year old Male. I had my first occurrence of a pilonidal sinus when I was around 15 or 16. I thought I'd just randomly put a bit too much pressure on my tailbone by chance over the past week or so when it started to hurt and bleed a little bit. Then we went to the doctor who referred us to a specialist who told us it was a pilonidal sinus.
The doctors always said to us that it "might" clear up on its own and we should just take antibiotics to make it settle down. No doctor wanted to do surgery. In the scheme of things, I believe my pre-surgery pain was nowhere near the pain some others have had. Mine was very uncomfortable and the blood and pus that came out of it was a bit of a handful, but it wasn't excruciating.
I had my biggest flare-up a week before my wedding and as a result, was on Flagyl during it, therefore, no alcohol!
Incidentally, we accidentally told the doctor in the accident and emergency room (it had been bleeding quite profusely) that my specialist was another general surgeon I had seen about a different issue. THAT specialist wondered how come we knew so much about it when he hadn't even diagnosed it. He too didn't want to perform the surgery!!!
After I got married, I went to the doctors where my wife works (as a receptionist), this doctor said to us that given I am only 21, it wasn't just going to disappear any time soon. He booked us in and I had the operation two weeks ago.
My sinus was a bit longer than he expected (2.5 inches or so) but it didn't branch off to the sides, so he was able to close the wound. I had a drain in for a few days and things were looking good.
About a week and a half afterwards, my surgeon was unavailable, so we went to another surgeon my wife knew (who was supposed to have been the one assisting on my surgery but was unable to do so). We showed him that the wound had started to really gush out this bloodstained fluid. He diagnosed it as liquified bruising from around the site. I had no temperature, there didn't seem to be any pus, it wasn't overly red, so we were glad to hear it wasn't infection. We did a swab just in case.
The swab came back positive for an infection from a neighboring region (we all know which region!) I had been on antibiotics for staph-type infections and this other one had gotten in and stopped the wound healing. My surgeon pulled out the last of the stitches and an internal stitch and opened the wound up. We were now going to have to pack it. I was really disappointed in my surgeon, he had me on the table and didn't tell me what the heck was going on as he was digging around in there and pulling freshly healed tissue apart, it was extremely painful and I had no idea what was going on. I had blood coming down between my legs and I was so distressed by the suddenness of everything that I couldn't even put the words together to say "WHAT THE HELL ARE YOU DOIN' MAN!!!" I wish I had now!
Anyway, we've been packing it for two days now and I hate it, it hurts, but after about half an hour it's not so bad.
FYI -
1. My wife is almost finished studying to be a nurse and it's such a blessing to not have to go to a doctor to get it dressed all the time.
2. I am packing with Sorbsan, covering with a combine and sticking it all down with strips of Fixomull. This is basically the same setup I had with a closed wound, except the seaweed (sorbsan) wasn't packed in. If you use two different strips for each cheek at the bottom, you will be able to almost totally seal it (not too much) and before I had it packed, I never had any troubles with the seaweed falling out.
3. It took us three post-op visits to get the doctor to sit us down and tell us what I can and can't do regarding sitting, stretching etc. Tell those doctors who is paying them and make them tell you everything you want to know. Importantly, if they start mucking around back there and it hurts and you don't know what they're doing, speak up, I wish I did, I felt stripped of my dignity by not putting my foot down.
4. If your sinus is not too bad, read up as much as possible on what you may be in for if electing for surgery, as I learned, it's far more intense than it may seem like at first.
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