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Date: April 28, 2007
StoryHi, my name is Brandy, I’m 27 and my cyst problems started when I was 15 and I had my first flare up. I went to my doctor and he sent me to a general surgeon in May of 1995 (going into my sophomore year). I had the thing removed and it was stitched up (closed) NEVER will I have that done again!!! The doctor left the stitches in there tooooo long and the skin grew over some of them, I didn’t get any pain meds when he took them out it wasn’t supposed to hurt and I SCREAMED and CRIED the ENTIRE time! A second nurse came into the room to see what was wrong (I was disturbing the other patients in the waiting room, yeah like I wasn’t disturbed myself, it HURT!) My scar is awful, big stitch bumps and a 5 ½” long scare that is raised and folded over about 3/8” to a ¼” from the rest of my skin.
Needless to say after it “healed” it came back with a vengeance!!! I had to live with the pain and sitting through classes until I could have the surgery again in May of 1996. This time it was an open surgery, I went through what most of ya’ll did with the packing gauze but mine was with Iodine, it didn’t sting for me but from reading some of the other stories in here it can. I don’t think that I had the sting problem because I dissolved Epsom Salt (a natural anti-inflammatory) in a cup of warm water and poured it over the wound while in the shower before the iodine dressing. My problems all went away for a while and life was grand.
Then in Aug. of 2003 I had another flare up and ended up having it removed (open surgery again, gauze and all). This one was deep, but concentrated in one spot. The incision was only an 1 ½” long but it was 2 ½” deep, they had to take out a lot of scare tissue from the first 2 surgeries. The thing did not want to heal, I was out of work for 2 months and it still took 6 before the doctor said that it was sufficiently closed for Him to call it healed, bummer. But it didn’t come back for a while, it’s now April of 2007 and it just came back again, for me the third time wasn’t the charm, I hope for someone else it is.
This one has started out smaller than the other ones and right now I’m trying to treat it myself. It is an open sinus there is no cyst on the surface yet and I’m treating it with a peroxide and Epsom salt bath, usually for 20 to 45 min. as long as I can stand to be in there. In a bath tub that’s filled about half way with HOT water (just enough to cover to about an inch or so above the crack/cyst/sinus. Put in between 8 and 16 ounces of peroxide (usually about 50 cents to $1.00) and about a pound or two of Epsom salt (you can get a 4 pound carton of it for about $2.00) after the tub is filled. Get the water as hot as you can stand it, this combo will make you sweat, the salt helps the inflammation and the swelling and the peroxide helps to fight the infection (if you can’t sit in the tub on your bottom very long you may try getting a couple of bath pillows and putting them under your thighs to keep the pressure off). A cool/cold shower afterwards is a must to help close your pores after sweating or you’ll keep sweating and that will get in the wound. I’ve been doing this for about a week now and I’m not near as red, sore, swollen or itchy as I was when it started so I’m hoping it’s going to work at least for now, I’ve got a trip coming up Memorial Day and I don’t want to miss it.
Things that may help: No wearing jeans/pants/boxers that don’t stretch, sit on a coccyx cushion whenever possible, sit with your shoulders back and down it will help your posture and take pressure off the butt (hold your arms parallel to the floor and then rotate you palms up, your shoulders will automatically go back and down), get up and walk around every hour or two stretch a little, if you have to do sit ups use a machine or do them on a pilates ball it’s not fun but it’s not a hard surface either.
Date: April 28, 2007
StoryIt is 2:40 AM on Saturday and my cysts just started draining on its own. This is the second time I have had had a nasty flare up. The first was in January of this year. It began to hurt on Wednesday and I knew immediately what was happening. Thursday it was sore but bearable so I decided to hold off on calling the doctor till Friday morning. When I finally called the doctor Friday I was very disappointed to find out I could not get an appointment until Monday morning. By Friday evening the pain had become so bad that I was bed ridden, laying on my stomach. I was really afraid I was going to be in this much pain all weekend. I have had appendicitis and the pain was awful but Pilonidal Cysts are much worse in my opinion. I was finally able to fall asleep around 1AM but I woke up an hour later covered in sweat. I'm guessing my fever broke while I was asleep which was the cause for the sweat. I got up to use the bathroom and noticed the cyst was not nearly as painful when I was getting up out of bed. When I got to the bathroom I discovered the cysts had begun to drain on its own, a lot. Thank god that happened I don't think I could have made it all weekend in that state of pain. I'm hoping when I go to see the doctor on Monday he will want to remove the entire cysts seeing as how this is the second time this has happened in a four month period. Both times the pain made it nearly impossible for me to move/sit up right/stand up. It has also caused me to miss several days of work. I was supposed to help my girlfriend move and go fishing this weekend, neither of those are happening. PILONIDAL SUCKS!!!!
Date: April 27, 2007
StoryI am so glad that I found this website!!!! I googled Tailbone cyst and it brought me here. I knew that I had a cyst...but thinking I was a freak...I didn't want to talk about it to anyone. I had my first flare up about 3 years ago. It was very small....and it only drained a little....so I ignored it. I honestly thought that it was from a hard day's work moving that I had done recently..from all of the sweat. Well----over this past weekend, I felt severe tailbone pain and the area on either side of my crack was very hard, like a cyst. So I just thought that it would drain a little and be done. I thought if I put heat on it that would help with the pain, and I have gone about my life all week. In the meantime, I had this huge "pimple" growing at the top of the crack. It was the size of a ball that you play jacks with. I have been miserable. Luckily, all of the heat worked. The HUGE pimple surfaced a head the size of a pea tonight. My sister, who must love me more than life, poked it with a needle for me. INSTANT relief. It drained A LOT (probably more than a cup full of fluid in the first 20 minute), and it is still draining pretty steady 3 hours later. I cannot believe that this thing had that much fluid in it. And the smell...I can't even describe it. It was nauseating. But I am so glad that it finally drained. After reading all of the stories on here, I think that I will wait a little longer before going to the doc. I can't be out of commission for very long. Too many kids, and too much work to do. But thank you all for your stories....it has given me hope, and re-assured me that I am not a freak.
Date: April 26, 2007
StoryI just had my open wound Surgery done on August 2006, ever since then I thought the wound was healing, but now the area keeps draining like crazy, I have no idea why or how, and then sometimes I feel like I have a bump where the surgery was, and a month ago it turned in too a pimple and then it busted and turned in too a hole on the same spot the surgery was, so I waited a week and it closed over time, so I was wondering...Why am I having all this trouble? So I try to sit down and I can't since I feel like a bump where I had my surgery. . It feels like a bump and it sure drains a lot of clear liquid, I mean so much liquid that before I had the pimple, I would feel the liquid draining down to my knees so then I was kind of got mad and cleaned it up and ignored it. Here comes the
embarrassing part. I wear a sock where my butt crack is so that it could leak on the sock and so I won't be able to feel the wetness through my boxers. It is so uncomfortable I get mad because I definately don't want to go through all that trouble again, I rather just live with it now and hopefully wait for it to just leave me alone someday.
Date: April 25, 2007
StoryI was 29 years old, about to turn 30. I had this severe pain in my natal cleft and honestly had a hard time sitting down, driving, and even sleeping. My wife and I were visiting friends in the Tennessee mountains and it was Sunday, right after lunch. We had packed up, but were kind of lounging around avoiding the inevitable 3 hour drive home. I was laying on the couch watching TV....when I stood up, my wife saw the back of my jeans and said "Oh my gosh, what happened to the back of your pants?!?!". I can remember that like it was yesterday (it was 3 years ago). My cyst had burst. I thought I was about to die, I thought this was it...this is how I am going to to go. I ran upstairs, hoping our hosts for the weekend would not notice that I had a huge red stain on the back of my jeans. I unfortunately had to do some self exploring and some investigating....it was bad.
Moving ahead, I immediately called the doctor and the nurse said I was okay, not to worry but I needed to see a colorectal specialist that day. I met with the doctor and it was probably the most uncomfortable medical consultation I have ever had. But, he said surgery was imminent. He needed to get in there and carve out the tissue and remove the whole thing (even though the cyst itself was no longer there). Surgery went fine, recovery was brutal...but for those enduring this, keep to your meds, take your baths even when it hurts. Be gentle and don't rush back into your normal life, let the wound heal. I have not had a single problem since.
Date: April 23, 2007
StoryHi all, I'm a 30 year old Female who just realized she has a Pilonidal cyst. A few days ago I started having pain near my tailbone. I was trying to figure out what I had done to injure my tailbone and couldn't think of anything. Yesterday it was hurting worse so I decided to google treatments for broken tailbone. On an internet blog I found a discussion where someone mentioned it could be a pilonidal cyst. They explained what that might look like and the symptoms. So I went to the full length mirror to check it out and long story short I was able to make it drain a little - I must have a sinus also.
Now that I am reading all this stuff on the internet it is so clearly a pilonidal cyst. I've had these 'tailbone' flare-ups for probably 5 years now and always thought I had done something to injure my tailbone. Now it all makes sense! I really only have a flare-up maybe once a year or less (so far). So at this point I plan to just treat it with the recommendations I've read online. I'm just happy to know what it is now..although after reading some of the stories its a little worrisome. A little background: I probably had my first flare up around age 25. I work at a computer job where I sit a lot! I've been doing this work about 10 years. These flare-ups seem to coincide with times of frequent running for me (training for 1/2 marathon etc). I can only assume it has to do with the amount of friction and sweat going on in the 'crack'. This flare-up also happens to come right before my period.
Date: April 19, 2007
StoryHello all...I'm a 27 year old female who has been dealing with this for five years. When I first noticed a bump at the top of my crack, I wasn't sure what to think. But when it really started hurting and I was uncomfortable sitting, I decided to go to the doctor and check it out. After he told me what it was, I saw a surgeon and he did an outpatient surgery and I was left with an open wound. It healed nicely and I was glad I got it done. For about a year, I had no problems, and then it reared its ugly head. It drained once, and then for another 6 months or so I didn't see it. Then it drained again, and then it started to happen more frequently, until it got to the point where I was dealing with it once a month.
I finally decided to go to the surgeon again. So last week on April 11th, I went in for surgery, and now I have a closed wound. Yesterday was my one week check-up and he says it looks good. I've never had stitches before, so I'm kind of worried about how it's healing, although he said it looks good. I'm worried that I won't be healed in time for my trip which is in three weeks. My stitches are supposed to come out next week, which leaves me two more weeks to heal before the trip. Hopefully all goes well. Ever since I've had this problem, I have checked in with this site from time to time to get feedback, and this is the first time I am posting my story. I'm thankful for all the information and stories, they are so helpful... Take care everyone!!!
Date: April 17, 2007
StoryHello to all my fellow pilos, those big and small.
I am writing to share my personal perspective on how I plan on attacking this gruesome beast. But first, let me enlighten you on a little history about my pilo, Mr. Daddy Jack. Yes, I named the dreadful fool. It's been 7 yrs and still counting, so I think it deserves a name.
It was senior yr in high school when I first noticed it. Initially I thought it was a wart. I almost convinced myself that my girlfriend had burnt me with an STD but decided to hold off. In the outset, the wart-like creature behaved in an unusual way, appearing on and off at its own discretion. However, over time, it grew larger and stronger. The excruciating pain really didn’t kick in till year 5. At worse, it felt like someone was stabbing me in the rear with a sharp knife. Not good! Even with the pain, I remained optimistic that maybe one day this thing will just vanish. Well, that certainly didn’t happen. I finally man’d up and told myself that this has got to stop. I had enough! Yes, it took me 7 yrs to muster enough balls to have a doc examine the prick. Embarrassing to say the least. So first…I went to my dermatologist, and he confirmed that it was a pilo abscess. Thank god it wasn't an STD, but little did I know, this 'thing' was just as bad. I swear to you, the name in itself fits perfectly with its ugly attire. Anyhow, he advised I consult with a general surgeon to discuss my options. So a wk later, I met with my GS. I tell you, its really discomforting to have your ass examined by a doc. Nonetheless, it was all for good intentions. I asked the doc to be straight up with me, and he did. He expressed how some docs dreaded this surgery simply b/c of the low success rate. Reoccurrence is precisely why he and even some of his colleagues are against surgical incisions. I was alarmed at his reaction, and no, he wasn't trying to scare me off. The dude was just being real about it. Furthermore, he's done thousands of these procedures to understand the implications, so his credibility, in my eyes, is not in question. However, as odd as it may seem, my intuition at the time told me to shoot for the surgery. Until now!
After months of researching and analyzing my options, I've come to the strong conclusion that surgery will be my last resort; again, I just don’t have enough confidence in the surgery nor do I feel like altering my anatomy. But let me tell you off the bat that I'm not convinced that this method that I am about to use will actually work. It’s just unfortunate that there isn’t a guaranteed diagnosis out there, and since our bodies are unique, what works for one may not work for another. In any case, I’ve decided to move forward with the following remedy:
For the next 60-90 days:
No dairy products (replace milk with rice milk)
No caffeine (includes chocolate)
No citric acid (oranges, juices, tomatoes)
Reduce high fat/sugar intake
Drink organic apple juice, water, protein shakes (100% Whey Protein)
Eat organic whole grains
Eat all natural or organic peanut butter and granola bars
Eat apples, cranberries, nuts…
Take the following herbal supplements: Maitake
Shitake
Thyroid Supplement
Multi Vitamin (Zinc, Vitamin C…etc.)
Also:
Shave hair around cyst (razor), not my entire ass. I just don’t like the idea of shaving your entire ass every wk. or so…
Avoid activities that may irritate the cyst...including SEX!
Improve posture and use a tush cush
Exercise
Hygiene – keep area clean. Shower twice daily using anti-bacterial soap
Apply drawing agents (natural honey) directly to cyst. Good antibiotic and healing agent. Cover with gauze.
Good luck to you all!
Date: April 16, 2007
StoryI have just had my first experience with this pilonidal cysts thing…I have had pains on my tailbone in the past but just thought of it as bad posture due to my job – sitting all day in a sales office. The pains would come and go every few months but not enough to make me take any meds or go see a doctor. This past weekend I was feeling the same little pain, but this time it grew more intense at the end of day Friday I was not ok…still refusing to go to the doctor on Saturday the pain still grew and felt sharper….still refusing to go to the doctor Sunday rolled around and I could not sleep sit or stand straight. There even was a visible bump at the top of my but crack – this time I knew with out a doubt I need something for pain. Off to the doctor I went, not knowing what it was. The doctor looked it all over and advised me of this pilonidal cysts. Not knowing any thing about it he explained it to me and that there was 2 things we could do – send me home with pain killers and antibiotics and hope that my body kills the infection and take the pain a way or lance it and drain it and hope that would cure it.
Being in as much pain as I was any thing sounded good for immediate relief “LANCE IT” I said. The doctor froze the area (putting the needle right into the problem area – causing me almost to pass out in pain!) then proceed with the lancing. As the pus ebbed out I felt immediate satisfaction – gone just like that! He then packed it and dressed it telling me to be back the next night and the next to have the packing changed. This is the first day and I am about to leave to go for my first change in packing. I hope this will take care of the problem, however reading the message board here am getting a little scared… I will keep you all posted..
Date: April 16, 2007
StoryHi,
I am a male who had surgery for 'Pinonidal Sinus' on 8th March, 2007. They stitched the wound up but on the first night after coming out of hospital, I had a sharp stabbing pain. It had started to bleed a little and hurt like crazy. After taking some pain killers, the pain eventually
disappeared. I went to the doctors and they told me not to worry about the open hole at the top and that the rest of the wound was healing okay. Even though it hurt a lot and it took me a long while before I could actually sit down again, it started to feel better down there. When I had my stitches taken out, the nurse said that it had knitted together nicely and if i was to have any more problems to go back and see the doctor. The following week, I started getting horiffic pains down there again. Following the nurses advice, I returned to the doctors who took a swab and put me on antibiotics. He informed me that the wound had got infected, even though I'd been doing my upmost to keep it clean.
I was on the antibiotics for a week and went back just to make sure it was okay and the doctor said that it didn't look like there was any infection down there, even though I was getting terrible stabbing pains still and a lot of discomfort, especially at night! On Friday just gone, the surgery phoned me to tell me that the swab had come back and the doctor felt I might need another course of antibiotics to fight any infection. The open hole is starting to knit together but by God, I am still in loads of pain on my tailbone. It really hurts, almost as bad as when the cyst originally burst down there. I was meant to return to work today as i am a primary school teacher but just can't as the pain is too unbearable and it's not fair on the kids or me. I am so tired of it all now, please someone tell me that it does get better.
Adrian.
Date: April 12, 2007
StoryI am the 52 year old female who posted a few months ago. My story began with "Mine is a most unusual case" if you want to read it.
Here is the follow-up...in the earlier posting I wrote about how an "interference field" is created from any surgery or trauma to the body. This could include getting hit with a baseball for example, and certainly a tailbone surgery. If left untreated, the blocked flow of energy eventually creates new, seemingly unrelated, problems.
I wrote that I was trying some mud packs with a special clay which is supposed to unblock the field, and I am overjoyed to report that the packs are WORKING. My lower back pain that has been almost crippling for the past 5 years is almost GONE! After only a few treatments! I applied the clay to my tailbone and covered it with a heating pad, as instructed.
I have a friend who was diagnosed with carpal tunnel on both hands/wrists. It was so bad she could not use one hand at all and the other only slightly. She figured what the heck and gave the packs a try. A week after doing the packs she can use both hands over 50 percent. Turns out she had received a dog bite years before on one hand, and cuts to both hands.
Anyway, just wanted to share SOMETHING positive! My previous posting has the info on the packs if any one is interested.
All the best,
HF
Date: April 11, 2007
StoryHi people..
I got another abcess, had it removed on Saturday for the 3rd time.
In a completly different place this time though...right at top of my bum (lower back) i am in absoloute agony AGAIN!..
Got the district nurse coming to my house everyday, all i do is sleep too so im not aware of the pain!
Date: April 09, 2007
Storyyeah...im not shure if my story will help people or kill there hope forever:)
Im 26 years old and im going to my 5 or 6 opperation in the next days.I first got this stuff when i was around 22.I was into sports alot and begin to feel pain when i was doing situp´s and things like that.I went to this young Doc (realy dint look older then me at the time) and he put on a latex glove a started to pick out hairs from my "upper asscrack :)" I felt realy small when i came out from the doc...almost like i had been "touched in da wrong way"...
Then i went under the knife and they left the cut open...it took six weeks to grow back to perfection or so..
That lasted for 2 years...2 really good years. Then it came back stronger then ever. Ive been to 5 op´s since then and they have stiched it together but not left it open like before. And
it's always the same story... 1-2 mounts after the knife i get 2-3
really good weeks and then it starts again.
And then to the part that realy bites me.
The pain i can handle...and all that stuff.
But this has realy gone down on me mentaly...i know it´sounds strange ..perhaps only those who have to stroggle with it can understand me now...but..this has caused me lot of "brainpain"..i get realy dark thinking from time to time..and this
isn't something that's easy to explain to friends. I once woke up after spending the night with a girl and noticed a big stain of blood on the sheet.I manage to hide it with an old carpet but this was the last drop in my sea of "It will all go well".
This has also cost me a lot of cash...i start a new job and before i have an contract or some.. i have to quit again. Nobody will pay you anything cause your new.
I went to an insurance office because id seen ad´s in da tele about "sallaries insurence" if something happens like you lose your job because of something strange you are insured.I went there and got a flat "NO"...this isnt something we can insure you for.
Im not posting this to get someone "new" out there sad or to kill his will to get better. Im doing this to share my view of a
problem that has gone cronical on me.This is nothing to laugh about...after going trough all those op´s i see litle
difference between cancer and this shit. When people get really bad illness like cancer they get all the help and understanding (and they should of course) but when people get this ('pilonidal sinus') they first of all are too
embarrassed to talk about it and if they do they get no understanding...(what..do you have something in your ass?) (whats wrong with you boy...ass
problem??)
Personally i dont care if people understand this shit or not...doctors dont understand it anyway..then why should i.
But!!... this is not the end of the world.This is fixible and will hopefully stop when i get older then 35.And it´s easy for me to see that things could be worse..alot worse..id rather have this and get no understanding and no money then have cancer.
I just think that because of the fact that 1,2% (approx) of young males have this it could be done more to learn about it and at least try to find some cool name on it....like coolcrack or some.. :)
And in da end....i think it´s good to use hairremoving creem on our asses.
Good luck my friends of pilonidal sinus.
Date: April 09, 2007
StoryI'm a 15 year old male and I had my cyst removed 3 days ago. The nurse told me it was much worse than originally thought, they had to cut through several layers of muscle to remove it completely. I have a 3.5" X 1.5" cut stitched up in my crack, and it HURTS!!! I'm pretty much just miserable. I don't have much of an appetite, and all I want to do is sleep be cause being awake sucks. I've had other injuries, deep cuts w/stitches, bad sprains, and spent a few days in the hospital with food poisoning, but this is the worst. I wake up, take a percocet & 2 ibuprophen, wait 20 minutes, and go back to bed most of the time. The pain pills really don't help all that much. It's constant pain, that's really bad when I move.
It's also a really embarrassing situation. It sucks that I have to wear this weird fishnet underwear to keep the pad in place to soak up the drainage & blood. At least I'm out of the diapers I had to wear for the first 2 days. So my Dad and Stepmom have to see my ass to change the dressing 6 times a day. But the worst is that I ran out of pads yesterday morning, and it was Easter Sunday, and all the stores were closed. So I've been walking around with a MAXI PAD stuck inside my itchy fishnet underwear until my Dad can get some gauze from the drug store.
So, today is the first day of my week long Spring Break, and I'm stuck in Hell. My Aunt had her cyst removed and told me it would be no big deal. She was so wrong.
Date: April 08, 2007
StoryWell an update from April 7th, it's now April 9th, and I forgot to mention I'm a 34yrs old male. Well I guess putting heat on the cyth and taking warm bath had the cyth grow pretty big, god it hurted, well I was lying on the couch and the thing let go off to E.R. where I was seen by the doctor she immediatly squeezed what was left inside ouchhhhhhhhhhhhhhh. It was packed only 1/4 inch of packing used not to bad, I was there from 12:30 a.m. until 02:00 a.m., my god what a god aweful smell. Well I went in this a.m. to medical daycare and had it re-packed, upon observation there's apparently a second canal there, I'm hoping to kill the infection this week and go on my holiday and will schedule a meet with my home physician to set up a meet with a surgeon, I want this thing out of me, I'll play the odds and try the get rid of it for good. Great site and helped me out. I dislocated my shoulder 15 years ago, that hurt more but this was a close second.
Jason
Date: April 07, 2007
StoryWell it's April 7th in Moncton, New Brunswick, Canada and I'm a Cyth Lord. All kidding aside, I've first notice some soreness a week ago after a day of four wheeling in the cold, I tought my cocyx was sore, but it did not go away for the week, it was sore but I was able to function, on Wednesday the 4th and Thursday the 5th I played five hockey games during the two days, on the night of the 4th I noticed it was swelling even more and on the night of the 5th I could physically feel the swelling happening, it was decided I would go to the E.R. in the a.m. (Easter weekend oh my god)Well by the next morning it hurt to walk, to sit and to bend over, the night before I had went on the internet and all but determined I had a Pilonidal Cyst and by touching and how I was feeling a pretty good one at that. I went to E.R. and after 4hrs of waiting the Dr. confirmed my diognostics but informed me that the Cyst was not quite ripe enough to drain. My problem is that I was planning a trip next Friday for two weeks to North Carolina for Kite Surfing, I'm basically looking for a quick fix for now, he prescribed antibiotics, I not this won't get rid of the cyst but I'm hoping it will kill the infection and I will be able to go for my two weeks and then take care of the problem when I get back. Second if he drains the cyst am I able to do physical activity. Today it's still pretty sore, I've been taking hot bath and putting a hot pad on the area to softing it up a bit. Well Murphy law kick in, but I think back to all the times it felt a little swollen in the same area and never tought more of it, I know what it's now. I have a follow up on Wednesday will post again.
Jason
Date: April 05, 2007
StoryI had surgery for my pilonidal cyst on March 31st, 2007. I had been dealing with pain around my tailbone on and off for over a year. It would hurt, but then go away, so I didn't think much of it. Tuesday night (March 27) my tailbone area started to hurt a lot. It hurt to walk, sit, or lay down on my back. I went to the doctors on Wednesday (March 28). He looked at me and said that it was a muscle spasm. He prescribed me some pain medicine and told me to go home and stretch out my back. I took the pain meds but didn't stretch my back out because of the discomfort. Saturday morning (March 31) I woke up and found blood on my sheets. My girlfriend looked at my backside and noticed blood all around my tailbone area. We quickly went to the E.R. and they diagnosed me with a pilonidal cyst. They lanced it, drained it, and packed it. Every nurse, doctor, and surgeon who has seen it has been surprised on how deep it is. I guess I've got a big one!
The surgeon that I will see on a regular basis about my cyst has instructed me to remove the packing, shower, then repack...twice a day (which my wonderful girlfriend has been helping me do). The packing procedure is definitely not a fun one. My surgeon can't tell if the E.R. surgeon removed the sinus tract or not, so she said I may need another surgery (or else prepare for it to return). Only time will tell.
I was very glad to run across this web site. The information this web site contains will greatly help me through my journey.</p>
<p>Thanks,<br>
Anthony<br>
Oakland, CA<br>
ahoppe@berkeley.k12.ca.us</p>
Date: April 05, 2007
StoryAround 5 years ago is when my pain first started. I lived with it and just put it off as nothing to worry about, until about six months ago. I was working midnites and my rear really started to hurt. This was the worst flare up I have had yet. It hurt to even think about sitting!! When I got home in the morning I undressed to take a shower and my underwear were stuck to my butt. The cyst had popped open. Called the doctor and set up an appointment for surgery. I had the surgery 4 weeks ago and am now back at work. It was an open wound healing proceedure. My wife said the hole was big enough to stick 2 golf balls into. I am now about 95% healed and feel great. The surgery and aftercare were not nearly as bad as I thought it would be.
Brian |
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Date: March 30, 2007
StoryHi all! I'm a 22 year-old female who's had three surgeries in the past 4 years. Future cysts are a definite concern, but currently, my back pain is #1 on my list of worries.
Since noticing little craters around my tailbone about 5 years ago, I've had lower back pain. I don't think it's normal for a 17 year-old to suffer from back pain, but I guess it could be. I went to see a lumbar specialist, since my back pain worsened. After getting an X-ray and an MRI, I initially was diagnosed with having spondylolysis (a 5th lumbar spinal fracture), but the diagnosis doesn't add up to my extreme pain. Standing still and sitting are becoming more challenging each day. I take a coccyx cushion with me everywhere I go, since I still have an open wound from my last pilonidal cystectomy. I'm sure to some extent anyone with an open wound around their tailbone has bad posture or chooses to sit on one butt cheek over another to reduce their amount of pain; but from the stories I've read online, it doesn't seem like anyone can relate to the crippling effect that my back pain causes. I don't allow anyone to touch me. Hugs, handshakes, etc., all cause pain in my lower back. Physical therapy hasn't helped and perscription drugs (valium, vicodin, Tramadol, codeine, etc.) do absolutely nothing to alleviate the pain. It's definitely not an issue of tolerance, since I've only taken a few pills of each drug, and I've tried taking the maximal possible dosage. My pain is so great that I'm having a hard time wanting to fight the pain and depression. I'm to the point where I don't wish to live anymore. I'm wondering if anyone out there has a similar experience with their pilonidal disease. Any advice would be appreciated.
-Kelly
kglass03@gmail.com
Date: March 26, 2007
StoryI have been dealing with my cyst for the past two years now. Almost a year ago I had the closed surgery done, but I have been having problems with it for months now. It really gives me trouble when I'm sitting for a long period of time. I'm wondering if I will need to have the surgery done again, but this time with open healing. Could someone give me some advice on what to do? This thing is really starting to hurt again. My email is patriotrocketk@earthlink.net
Date: March 18, 2007
StoryHello all! i'm a 25 year old male. I had posted a story last month but it doens't appear on the board anymore. neverless it sound just like all the other surgery stories. my first surgery was 10/26/06. the first was a open wound, which would get really colse to closing up completely and then split open again. so i went to the doc 2/12/07 and he said he needed to get in there again......tomorrow! so i went in and had it done again. this time they closed it with stiches. 5 days later it got infected and had to have the stiches pulled out with no pain meds at all. the worst 10 min. of my entrie life. my doctor wanted to get me a wound vac. so we packed my wound for a week until the vac was approved by insurance. so 2/26/07 i had my vac installed. i had read stories about it hurting and the vac was heavy. after 3 weeks i can say it is so worth it. i gets changed 3 times a week. there is no pain at all. the only bad part is taking the tape off your back side. it's almost like waxing but it happens really slow. after a while all the little hairs on your butt checks get ripped off and it just tingles a little instead of hurting. i would recommend to anyone who has a open wound to ask your doc about a wound vac. it is made by a company called KCI. the best part of it all for me is.....i don't have a wet bottom all the time. the sponge inside the wound sucks up all the discharge. i went from 5cm deep wound on 2/26/07 to a 1.2 cm deep on 3/16/07. it works very well. if you have any questions about it i would be more than happy to answer them. my email is spela454@hotmail.com
Date: March 18, 2007
StorySome good news about this crappy condition...I freaked out about it, obsessed, studied, interviewed and drove myself nuts! But to this point I have had success living with it.
I first had mine while in grad school at age 36. It was 2004, I was miserable, had a fever, sat in bathtubs for hours, ran my blood pressure down, felt like crap. I went to a doctor who referred me to a surgeon. I asked if this was a boil and if he was simply going to poke a hole in it to drain - he said "yes". So, as I'm on my stomach the nurse - who was great, handed me a washcloth - I asked what that was for, she said to bite on. I didn't understand and just then the doctor "poked a hole in it" which apparently in Alabama means he lanced it with no pain killers or numbing. It took two months to heal (before I could work out again, but I was back at school in 2-2.5 weeks). The surgeon said there was a 3% chance of it returning because of my age (not common in women near 40), and I was not hairy. Well, it did come back in 2005. This time the abcess had a head like a pimple, so I went to an Urgent Care general clinic. The doctor on duty said she could refer me to a surgeon, I asked her what harm would there be to poke a hole in it. She said she had no experience with pilonidals but was willing to try. I asked her to show me her different sized needles, I picked one I thought was big enough (but not too big), I asked her to poke the top of the pimple (zero pain - never felt it) then prescribe antiobiotics - she was really cool. I went home, took two baths a day to help drain, then a week later went for a surgical consult for the heck of it. In the appointment, he widened the hole a little bit with a q-tip, then used a magnifying glass to look around the hole for hair, he didn't see any and gave me the option of surgery. His procedure was not the open incision but rather one described in Dr. Bascom's slides where they go in from the side of the butt crack, clean out, remove the "pits" & stitch (no open wound). I told the surgeon I was going to hold off & see how it goes and would come back it if returned.
Well, it's been two years and it hasn't come back yet. Here's what's worked for me so far:
1) when working out - I don't do situps, I use an upright ab machine; 2) I quit riding bicycles (or spinning) a lot, I still do a little 3) If you do out-patient surgery, don't let them operate without numbing, if they can't numb request "versed" (vers-ed), it's a pill that knocks you out for an hour or less - it's common in minor surgery - but generally you have to ask for it. 4) I don't use oily shampoo, if use hair product (dye), I wash my hair under the sink, I don't let lots of hair product in my crack 5) I clean the crack everyday & clean it last!...in the shower, I use soap & washcloth, clean top down, not up then down 6) if I take a bath, I clean the crack last - not in the soapy water, but on my knees while the water is draining 7) I try not to sit a lot at work, I change my position, stand up every hour or so 8) in bed, I don't wear night garments with a seam down the crack 9) I've heard (but haven't tried) a tailbone pillow for sitting to take the pressure off the area 10) my sister (who had one too) says when she feels one coming, she will continually run her finger down her spine with a lot of pressure & it makes the cyst drain (this didn't work for me) she had surgery once & won't do it again, so this is her way of living with it - and she did confirm the no-numbing lancing is way worse than delivering a baby.
This sounds like a lot, but it really isn't and it's very routine for me and has so far kept it from returning (or flaring up). If you have any questions, let me know! gina g_lundy@msn.com
Date: March 14, 2007
StoryAfter a 34 year battle with my pilonidal problems, last week I had the cleft lift procedure done by the Doctors Bascom in Eugene, Oregon. This is my story. Over 34 years I had a lancing done, a closed surgery and an open surgery. None soled the problem. After hearing about the cleft lift procedure I did it eight days ago. Pre-op was nothing exciting. I had a conversation with the anathesiologist, I of course met with teh Doctors, and I had an IV installed. They took me to the operating room clear of mind. I was introduced to the staff and some relaxation drugs were given to me thru the IV I was then given Nitrous Oxide. It was odd breathing this gas and looking back at four staff who were looking at me, no doubt waiting for me to go to sleep. Two hours later I awoke in the recovery room. The surgery was plkanned for 45 minutes. I awoke to the nurse talking to me and my wife working on my rear end. That was a bit odd but in a strage way it was comforting. They were teaching her how to take care of me at home and she was, I guess doing a fine job. I awoke with no stomach discomfort and no headache. I awoke in no pain at all. The sent me to the hospital room to keep tabs on fme overnight. All went well. I needed no pain medicine and I was up and walking the halls a few hours later. NO pain at all. I was all bandaged up on the backside but no pain. Sleep was fine in between nurses doing vital signs. IMy wife drove us an hour home with me sitting on my side. We did not fillo the prescription for pain killers. Bowel movemnts were a great fear of mine as I recalled the tremendous pain sitting on taa toilet seat after my previous operations. In this case there was zero discomfort although wiping was out of the question. Instead we have a had heald shower nozzel and that served the purpose just fine and has for the subsequent seven days. Each day I walk a bit more. At first I layed on the couch or in bed. Now I am sitting in chairs and doing email for up to forty five minutes at a time. My wife applies antiseptic foru times a day. It feels like she is using ice and it tickles but there is no pain.
So far I am shocked by the lack of pain. I have experienced no fever or headaches and my stomach has been rock solid. I have been cooking thi and Mexican food so all is well on the digestion front. I can feel wher they have recontoured my butt area by reducing erh depth of the crack. The recontour is not enough to alter my normal looks. I am a 54 year old male so how my butt looks under a bikini is of no concern. But the the teen age females that have expreseed fear that this surgery would make them less atttractive in their swimsuits to the opposite sex have no fears. The change is so subtle no male will notice it. If you looked good before you will still look good. And if you looked bad before you will still look bad. This surgery will not impact your looks one way or another. Time will tell if this surgery soloves my thirty four year old problem. But so far the recovery has been essentially pain free. Wiping is stilla problem as the area is pretty tender so get a hand-held extension for your shower head and visualize you are in a fancy French hotel. For those that have additional questions send them to me, stanbiles@aol.com.
Date: March 13, 2007
StoryWow, I've been reading all the stories for the past three hours, and I'm amazed. I had no idea just how many other people had PC.
My story is this: I had been feeling a small pain in my tail-bone area although I don't remember seeing any drainage. I'm 42 now and was 14 when it started.I told my mom and she took me into the bathroom to look at it. She saw what she described as a small hole, about the size of a hole a knitting needle would make if pushed thru my skin. It was centered in the middle of my butt crack.
We saw our regular MD, who sent me to a general surgeon. When we got there, he took one look and told my mom what it was. She then understood what the problem was because my uncle- her brother, had had the exact same thing when he was in the Army.
So at the age of 14 I had my first operation, where he tried to make it a closed wound. I ended up staying in hospital for 4 days. Back then it wasn't a big deal like it is today. That didn't last long, and it had to be packed every day, with the incision tearing open and all. That was in Sept. but by Nov. it had returned and needed to be drained again. So I went after Thanksgiving to have that done. That one was an open wound heal.
I remember various trips to the Dr.'s office for check-ups and he had to cauterize a few spots on occasion.
By the next year, I was in high school and it had returned yet again, only this time there were two cysts and were on their way to joining up to make a big one. One at the top of my crack and the other all the way down to right before my anus. The Dr. cut me open "from stem to stern" if you will, and the entire wound was left to heal from the inside out. This time I spent 5 days in hospital in isolation. Everyone had to wear a gown when they came into the room to see me so I didn't get an infection and also so my drainage didn't get the visitors sick either.
After that, the cleaning/packing of the wound was extremly painful. The Dr. had told my mom to use Peroxide and I see now that it isn't advised anymore. I know now why.... it burns!!! I would literally scream in pain every day, even if I took a pain pill 30 minutes before-hand. My mom hated making me feel agony but we got thru it anyway. Everyone is talking about the gauze used.. saying it was dry? I remember the gauze used for me was saturated with an iodine solution. That hurt like a mother!!
So back at school I never did have to take a gym class after that and had privileges to use the elevator all day (school had 3 floors)and I got out of class 5 minutes early :)
Now, enough of the rambling it's like this... the last time I had surgery was when I was 15 and I'm 42 like I said earlier, no problems ever returned. I have no crack, my surgery was done with a flap so the skin is stretched to meet on one side. The area that took longer than average to heal was near the anus.
There is something that isn't mentioned in this forum, at least I haven't seen it yet. When you become constipated and want to "go", DON'T PUSH!!! That just opens the incision and makes it bleed pretty good. Yes, it's from experience, the pain medicine will make you constipated very easily.
I would do it all over again if I had to, even with the Dr. telling my mom that he had to cut almost to the bone (tail bone that is) to try to get it all.
The first operation was done under general anastesia and the last two I had a spinal that made me unable to move my legs for about 6 hours after I woke up. I had to lay flat on my back the whole time, unless the nurse helped me to roll over onto my side. I couldn't sit up because I was told I would get severe headaches from the spinal.
I now have two nick-names that will stay with me forever: Bloody Buns and Half-Assed.
I'm not alone in this, thank God.
Mary Tess
Date: March 11, 2007
StoryIf anyone knows about the problems of having a Pilonidal Sinus it's me! I had my first operation in Dec 2003 at the age of 16. My wound was left open...it took from the 16th of Dec 2003 to the 1st of April 2004 for the wound to heal fully...so you can imagine how deep the incision was! I have to be honest though as much as getting it packed everyday was annoying I wasn't in any pain at all and for the most part didn't even notice my dressings. After the wound healed I carried on living my happy little life until Feb 2006. After coming out of the shower one night I noticed that the area where my scar was looked red then as the weeks went on I could see another abscess was forming. I went to my hopeless Doctor one day in so much pain I couldn't sit. She told me I would have to wait 6 weeks to see my consultant...however she sent me to the practice nurse to have my blood taken. The nurse, bless her, took one look at my wound and said "don't listen to the Doc...get yourself up to A&E now". My mum and I went to A&E that day, the Doc there lanced the abscess to reduce the pain and 2 days later I saw my consultant, Mr Paul Rogers, who took one look at me and said "I'm afraid it's more surgery Emma".
So on Mon 5th of June I had my 2nd operation this time my wound was stitched. Everything seemed okay, I had 16 stitches, 2 to 3 were removed per week by my practice nurse...I thought I was healing nicely. Then I got to mid July with only 2 stitches left to be removed. Woke up one Sunday night with the bedsheets soaked in blood and the pain was unbelievable. Once again I was whisked up to A&E where they discovered another abscess growing underneath the stitched wound. I was asked if I wanted kept in overnight and operated under a general in the morning or they could give me a local there and then and remove the abscess. I went for the local...jesus...let me tell you, I think if I ever have kids child birth to triplets would be a walk in the park compared to the pain I felt in that room! I was told they removed all the abscess and infected tissue and the final 2 stitches. I had an open wound again which had to be packed. You would think by now this was the end of the story...oh no! The nurse came to my house every day to pack the wound but each day she said the same thing "something isn't right Emma...there is a lot of blood here"...this went on for about 2 weeks before she said "I think you'll need to see Mr Rogers again"...I think I've seen this man more than his wife has last year! That day I got an emergency appointment with him. I found out he didn't do my June 5th operation, another consultant did, and he thought I shouldn't have been stitched in the first place...after poking about at the wound he said words that I dreaded to hear..."what are you doing on Monday Emma?" Me - "unless Brad leaves Angelina for a date with me nothing"..."I'm bringing you back in for surgery"...seriously!
So...on the 7th of August I had my third procedure to try and get rid of this damn sinus! Operation went fine and I was left with an open wound. Today is the 12th of March and I'm still having it packed. I had to take a year out of university - this was the most annoying thing, but to be honest I look at it as a bit of a blessing because it's made me realise how much I want to be in uni and get my degree because I have missed it so much! Pilonidal Sinus disease is literally a pain in the ass! You can feel as if your life has been turned upside down but let me say...you do heal and the packing just becomes part of your daily routine, luckily I've not had much pain at all during the healing process. I was in a ward and opposite me a woman, Margaret, was having her leg amuptated a few days after I was discharged. My sinus was nothing compared to what she had to go through. I know at the time it's hard because it's YOUR issue and YOUR problem but my advice to anyone suffering with the disease is just get on with it! Do what the Doc/Nurses tell you, the healing process can be a long one so enjoy those weeks off work - put your feet up and relax! Keep smiling...life is too short to let an abscess on your ass stand in your way! I'm going back to uni on the 29th of May to do my degree in Adult Nursing and I'm off to Toronto and NYC over a period of three weeks in mid March. I'm a very lucky girl and as cheesy as it sounds the whole "pilonidal sinus experience" has made me a stonger person and has taught me to live life to the max! :-) Sorry if I've totally rambled but if anyone has any questions about anything...the op, healing etc...please do not hesitate to e-mail me EmmaBrit116@aol.com :-)
Thanks...
Emma xoxox
Date: March 09, 2007
StoryHi! I'm Ann Marie. I would like to start off by saying that a Pilonidal Cyst as you know are not fun! Not fun at all! My story is pretty similar to the other ladies here. it started out as a mild bump on my tail bone about 4 maybe 5 years ago. It didn't really become a problem until maybe 3 years ago though. It would just be "tender" in that area. When it became an "issue" is when like I said 3 years ago it would bleed or have some kind of seepage coming out of it. ( It looked kinda like a very small dime sized pussy) discharge. Gross!!! I know! But, if it weren't for this page I wouldnt have been so comfortable with this to actually get it taken care of! ANYWAY.. I was having a lot of trouble sitting down as the cyst would get bigger and bigger. I would go to my Primary care Physician and she then would lance it and pack it. This happened 3 times until she finally said I needed surgery. The lanceing was hard enough since they didn't give me any novacaine or anything to numb it. It was just straight forward in your face kind've pain.
So, I was then told I needed to have surgfery and since i never had surgery before,. I was scared out of my witts! The whole procedure of the questions and checking in was terrible and frightnign all the same time! So, I was fortunate to have been blessed with a GREAT Surgeon Dr. Artusio in MD. he is wonderful. A great bed side manner and a great job on the procedure. He did the insision great and mind you It did realistically take around 8 weeks to completly heal for the doctor to clear me clean bill of health. But, It is completly worth it. Now that Ive had it done, I have no more problems sitting down and or worrying that I can't wear anything white from any "issues".. It's a complete lifestyle Change!! If I were to be asked If I'd do it all over again.. IN A HEART BEAT I WOULD!! You do go through some serious pain doing the changes, no joke.. pain! But, the secret to keeping it less painful is soaking in a tub with some ebson salt! Sit in there for about 10-15 minutes and then immediatly change the bandage! You'll thank me for it! It releaves the skin from the growth on the bandage and would feel like you're tearing skin directly off your butt! Anyway, I hope these suggestions help and your surgery is as successful as mine was! Do your homework on the surgeon! It will be beneficial to you in more ways then one in the long run! |
