- Date:
- July 15, 2004
Story
First of all id like to
say i love this site, i have just started posting here and it is
really nice to connect with people who have the same problem, makes
you feel like you arent alone. So here is my story and i will try
and keep it short.If anyone would like to email me you can at
gagrl3@comcast.net
I started having problems
when i was 14. I had pain while sitting, and a lil bit of blood
after i had gone to the bathroom, didnt really think much of
it..Until right around when i turned 15, i started having bad
swelling on my tailbone and the worse pain ever. Needless to say i
was rushed to the ER, had it lanced and was set up for surgery, but
seeing as my mom didnt have health insurance, it was put off. None
of us had heard of a Pilonidal cyst in our lives, so it was kind of
those things where we were all convinced that u take the meds they
give you and it will go away.. Wrong again, it did go away for
awhile, maybe about another yr, then it began to swell again, this
time we dealt with it at home with hot compresses, within 2 days
this nasty thing burst, and again got better for a lil bit. It
showed up again after i had gotten pregnant with my first child
about a yr later, i dealt with it all through the pregnancy and
right b4 i had gone into labor it was so bad, i literally had it
drained, right then and there and had my son hours later. By this
time i was married, health insurance wasnt a problem so i went and
saw a surgeon, we decided on the closed procedure, that was around
the time my son was 6 months old. Everything went really good, i
healed really fast, and about 6 months after that it came back
again, it would swell then drain, on and off. By the time i was 20
my body was going haywire, i ended up with shingles, started
developing huge lumps under both of my arms, that would also swell
and drain. ( was told they were cysts as well). Finally decided it
was time to see another surgeon, this time we decided on an open
procedure that used staples to hold it open. Sounds weird i know, i
had to keep going back to get them to crank it shut a lil more each
time for weeks. I had a really big hole in my back from this, the
Dr. had said the cyst had gotten very deep and he had to scrap at my
tailbone..Now i have 3 children, dealt with my pilonidal through all
of my pregnancies and Well honestly i wish my story ended here but
it doesnt, needless to say i had my last surgery 7 yrs ago and to
this day i am constantly draining and infected, it never ends for me
on a daily basis. I have now over the past 2 yrs, developed a second
cyst, right next to the first one. They both drain everyday , i
never get a rest from it.Also i have developed cycstic ance on my
face, loaded with ovarian cysts and fibroids. Finally though i have
talked to my primary doctor and got a referrel to a colon/rectal
surgeon, i dont want to get another surgery, i pretty much am at the
point now where i want to make sure this thing isnt cancerous, since
i have read on here how it could become malignant if left untreated,
im very worried about that. So i have had mine now for 12
yrs,constant oozing infection for 7 yrs and doesnt look like its
gonna go away any time soon. Im not trying to give a horror story, i
actually have never heard anyone have the same thing as me, draining
for years and years on end. I would love to be able to connect with
someone, anyone who is going through the same thing as me. Someone
who has been draining on a constant basis for yrs and yrs. I am
happy for all the people who are able to get healed from this and
move on, but i have my days where i just think, why cant that be me,
why am i like this, what have i done wrong to deserve this. I cant
just sit around and cry all day and feel sorry for myself cause i
have to much to do, but sometimes the pain and stress of this all
becomes so unbearable and i really hope seeing this new doctor that
he will be able to shed some light on this for me. I am 27 yrs old,
married for 10 yrs now and have 3 children and i want my life back..
- Date:
- July 14, 2004
Story
Please bear with me on
this story because I'm not finding any other like it.
My son had a very unusual
experience with this when he was 15; which would be 12 years ago. Hw
was staying at his grandmothers ranch helping with hay hauling and
other hot sweaty south Texas summer duties. My husband and I arrived
later and found our son Ben tired listless and his grandmother
complaining about her usual hardworking grandson not being his usual
self. Well, as his mom I go in for the usual 40 questions and
evaluations and he told me Mom look at my back. I pulled up his
shirt and saw the "thing" I guess every ranch hand on the place
heard me. I've never seen anything so frightening as a mother and
miles away from immediate medical help. My rushed in and immediately
took over. Is he a medical professional, NO, But he took over. NOW
LISTEN THIS IS IMPORTANT. WE cleaned him with alcohol and soap. Then
doused him with cap after cap of hydrogen peroxide. Then with
sterilized my husband pulled out globs and I mean globs of nasty
hair. Bear in mind that that this hair was attached to something
because because it was resistant and you could hear it being torn
loose. I know we pulled hair for a good 30 minutes. There was at
least a cup to cup and a half of nasty wet hair. I'm not advocating
this as a replacement to doctors treatment because at the time we
didn't know what this was. I immediately returned to Dallas the next
day and took him to a doctor and was told what it was and also that
whoever worked on it did an excellent job. He healed immediately and
has never had further problems and more importantly avoided surgery
just by pulling out the hair , cleaning the wound and following up
with antibiotics. Hope this is helpful.
- Date:
- July 13, 2004
Story
I am a 31 year old female
whose pilonidal cyst first appeared during my first pregnancy. In
telling my mother about it, she told me that one of my uncles had
the same thing when he was young. Therefore, given that I have none
of the "indicators" described on medical websites, I decided mine
must be hereditary. I had the excision on July 7, 2004, and am
recovering well. The pain is no worse than the cyst flare-ups. I
read all the horror stories on this site, and just wanted to let
people know that it isn't necessarily that bad! Reading the stories
did prompt me into action to have the excision done, however. So
thank you to all the people who took the time to post their stories!
- Date:
- July 08, 2004
Story
I had the complete
excision done on March 19th-feel great, the pain associated with the
surgury wasn't much worse than living with the cyst. The healing
process went well and was over in about nine weeks. I only missed
seven working days. I am completely recovered, released from the
doctor and hopefully cyst free forever.
- Date:
- July 07, 2004
Story
It was the summer of 2002.
I worked in the kitchen of a "greasy spoon" type restaurant. (I add
this because I tend to place part of the blame on the fact that I
worked there all summer and it was very VERY greasy and 97 degrees
in the kitchen everyday. Sweat + Grease = Yuck) ANYWHO... Early
August, I went to a family reunion. (Our family reunion is a weekend
long event that is held at a resort) So, I was laying by the pool
quite a bit the entire weekend. Sunday on the way home, I mentioned
to my Dad, who is a nurse, that my tailbone was sore. We discussed
it, and came to the conclusion that I was laying in the lounge
chairs all weekend practically right on my tailbone... so this was
probably why I was sore. Makes sense, right? The next day I woke up,
there was a small bump and it was getting increasingly sore. SO i
showed my dad, and he told me that I might have a Pilonidal cyst and
that I should probably go see the doc. However, I could not get in
for a couple days. The next day I work, I could barely stand the
pain. I was taking 800mg of motrin round the clock and it was not
even taking the edge off. I went to the doctor the next day, and he
gave me an antibiotic. This is basically him telling me, "oh yes.
it's a big pilonidal cyst... take some hardcore antibiotics to give
you a yeast infection but not do anything to the cyst!" SO i took
the "z-pack" and 5 days later... the cyst was bigger and badder than
ever. It was nearly a seperate entity. Man... this is making my
scartissue sore just thinking about it. Finally, I went back to the
doctor... and after he saw that it was not going away without a
fight, he sent me to the surgeon. I was in surgery the very next
day! I was SO thankful. (My dad knew the surgeon and got him to free
up a little time for me). Then the healing process began. I had to
quit my job at the greasy spoon joint... not that that was a big
deal. I hated it in the first place. But at least the cyst gave a
good reason to quit. I went back to college to begin my Junior year
soon thereafter. I had home health care come in twice a day and
change the dressing. I couldn't do it by myself! SIDENOTE: My
friends called it "stuffing the turkey." Finally I wanted to go home
with a friend for the weekend, so the home health nurse taught the
girl who I shared my apt with how to stuff the turkey.
I think I was pretty much
healed by the beginning of November. I know it was a little less
than a 2 month healing time span. MY doctor told me that I took very
good care of it and all that crap. I had a couple check ups and he
said, of course, that it might come back someday. You better believe
that I have been washing with antibacterial soap ever since the
Pilonidal cyst. He also told me that I have a sinus further down in
my crack. GREAT. What a treat that would be. I haven't had any other
problems yet. But, I suppose, only time will tell. Almost 2 years
cyst free!
- Date:
- July 02, 2004
Story
January 2000 I went into
Hospital for a Pilonidal excission, supposedly just for the
afternoon & then back home. Upon waking from my General Anesthetic I
was told that it was the biggest one they had ever seen (my
Pilonidal Sinus thats is!) & my half day stay turned into a whole
week. My daily care was extremely painful with the `Grand Canyon'
needed cleaning & packing daily. I eventually got to the point when
I went too see the Consultant Surgeon to hopefully get discharged
but to my horror he said `mmmm, this dosnt look right' & pulled it
up open right there (June 2000). Thanks Doc, that wasnt too
painful!! O.k. back to my daily cleaning, packing & dressing & the
blighter still would heal. At this point it was back under a
Consultant Surgeons knife this time to excise the Pilonidal Sinus
again (June 2001). O.K, back to the daily cleaning, packing &
dressing again which was now becoming my way of life (every day for
2 & half years by the way eventually). By January 2003 my skin still
hadnt healed & further Sinus's had developed much to my joy! This
was getting desperate now! My Consultant Surgeon said there was
nothing more which could be done for me & transferred me over to a
Plastic Surgeon for one last effort. January 2003 I had skin graft
from my leg & placed the full in length of my buttocks. You can
imagine how painful this was & I was in Hospital for another week.
To my relief the skingraft had taken & I was sent home for the daily
cleaning, packing & dressing again. However I had 2 woulds this time
as my donor site on the leg was extremely painful. Thankfully this
worked this time & I was discharged with a clean bill of health! I
didnt know whether to laugh or cry! Being in constant pain for that
long, ruining my career, my Girlfriend was cheating on me, I lost my
friends & a lot of self confidence but I was better!
Until now! An abcess has
now appeared which judging by my track history, is another Pilonidal
sinus! Do I have the energy to go through this again?!
Just thought i'd post this
note just to show either how bad things can get or that your Sinus
isnt really all that bad after all! Unfortunaely my experiences are
not a testament to the British NHS as 4 years on & my problems ar
still persisting. Oh well, here's for waiting for another 6 months
on their waiting lists.......
- Date:
- July 01, 2004
Story
A NON-HORROR STORY, FOR A
CHANGE. (knock on wood)
I am a 22 year old female,
and I had my pilonidal cyst excised three days ago. This is my
story, so far:
Three years ago, I noticed
my bum was sore when I sat the wrong way, and within a week I
developed a nasty, extremely swollen abcess... probably roughly the
size of a quarter all the way around. Very painful. Sitting,
walking, lying on my back were all very uncomfortable. I went to the
university health center and they immediately diagnosed a pilonidal
cyst, and made an appointment to have it lanced within a couple of
days, with a surgeon. The day of my appointment, the abcess
ruptured, and that was quite a mess. I went to the appointment
anyway, and the doctor cut deeper and squeezed the hell out of the
cyst, while I cursed and cried and nearly passed out from easily the
worst pain of my life. She had given me only a little topical
anesthetic. Did nothing. Brutal. I was instructed to have the wound
packed twice a day for a couple of weeks, and once a day until it
healed after that. I was given Percocets for the pain, which I
hated, and didn't help the pain much at all. I took a lot of
Ibuprofin. The first few "packings" were extremely painful and I was
very unhappy for about a week. Movement was limited, and I had to
take a few days off of school and work. After about a week, though,
I had healed enough for it to stop hurting when it was packed,
stopped needing pain meds, and could get around well. The rest of
the healing took about another 3 weeks, which were not much trouble
at all. When I was declared healed, my surgeon suggested I have the
body of the cyst excised, but at that point, I was not excited about
it, and decided to take my chances. For the next three years,
nothing happened.
Then, at the end of May, I
noticed a small swelling where my old scar was. I was immediately
alarmed, and started treating it with heat, etc. It never got bad,
but I was really worried, so I made an appointment with a surgeon
(another one, didn't like the first) to have it excised. Actually,
that infection disappeared, but I decided to go through with the
surgery anyway, so I never have to think about this again. Figured
it would be better to do when it's not infected, anyway, right?
So, I went in at 6.30
a.m., was hooked up to an antibiotic IV, the surgeon and
anesthesiologist (sp?) saw me around 7.15, explained everything, and
off I went. I hadn't slept at all the night before, and as I was
wheeled into the operating room, I freaked out hardcore, and started
crying. They put me out immediately (love that) and I woke up around
8:30, all done. They said the cyst was small and they got all of it,
and sewed up the wound, so if all goes well it should heal quickly.
Anyway, the anesthesia made me cry uncontrollably for some reason,
but I was in no pain at all, and I was sitting up! My mother took me
home, where I finally got some sleep.
I've been taking Percocets
very regularly and it's worked marvelously. I've been in very little
pain, in fact the most annoying thing about this whole ordeal is
that the plastic dressing is a little itchy. I'm a little sore from
lying on my stomach so much, and I'm bored, but I'm definitely
seeing vast improvement every day. I sit a little off-center, but in
general, I think this whole thing isn't so bad. I highly recommend
having the excision done when there is no infection, if you can
bring yourself to do it. I'll certainly let you all know if anything
happens, but so far, all's well. The stitches come out in two weeks.
And hopefully that's the end of that.
|
- Date:
- June 30, 2004
Story
About 1 year and half to
two years ago I found it painful to sit. After about a week I could
feel a quarter sized lump under the skin near the tailbone.
The day of my docters
appointment it started leaking puss. He sent me to a general surgeon
in town that day. When the surgeon saw it he said "oh yeah we have
to get that out of there".
They put me out with a
spinal. A pretty big needle that goes into your spine and paralyzes
you from the waist down. (Usually used for pregnant women)I woke up
about 90 minutes after surgery was done. (I was actually awake for
the surgery but due to the amount of drugs, I can't remember a
thing). The docter said I said some pretty entertaining things
during the surgery. It was scary waking up and not being able to
move my legs for a few hours but eventually feeling came back in.
I spent the night in the
hospital. The next day the nurses showed my mom how to pack the
gauze into my wound. I was 19 at the time but thanks to the
painkillers being naked in a room with my mom and nurses didn't
phase me too much.
My mom had to pack the
gauze into the wound for about 2-3 weeks, three times a day. Day by
day the amount of gauze needed diminished.
It was uncomfortable to
sit for the first few weeks so I generally layed on my side or
stomach. Or sat somewhat off center.
As bad as some of the
stuff I mentioned sounded, it really wasn't that bad. Two years
later and I haven't had a problem since.
- Date:
- June 30, 2004
Story
My name is Brandon and my
story begins 3 years ago, I was 19 and had moved back in with my
mother to help her out and to spend some time with her. There was a
divorce when I was young and lived with my father for over 90% of my
life at that point. We were getting ready to head on to Arkansas
from North Carolina to visit an uncle I hadn't seen in a long time,
(at least 6 years). About a week before I had a bit of discomfort on
my buttocks, I'm an avid computer gamer, and spend most of my day on
a computer, both at work, and at home. I figured I just needed to
get out and excercise more, but the pain never stopped. We leave for
Arkansas and the pain started growing exponentially. We then figured
maybe I had a hemorrhoid, and started treating it as such, using
Tucks pads. It did help with the pain a little bit for 2 days, and
the pain started growing again. The ride home to NC was
excruciating. I could tell there was a growth, and figured it was a
cyst, but not that big of a deal. And like the fool I was, (I'm
still terrified of hospitals) I decided I will lance it myself. Got
an exacto knife, with a clean blade, soaked it in hydrogen peroxide
and made an incision. It immediatly started to drain, so I figured
my problem would be resolved. I was wrong, the pain was still too
much, and I had to see a doctor. I had a problem though, I was out
of money, one of my other Uncles spotted me the money, and I went to
a local Urgent Care Facility. The doctor told me I had a pilonidal
cyst, but I had already lanced it, so it should drain fine. He
prescribed me some muscle relaxers and sent me on my way. I got home
and started my regiment of medication, (I don't remember what it
was) I hated the medication. It didn't do anything for the pain, but
made me stoned as hell. Didn't care that I was in pain. Got a call
from a doctor a couple of days later, and they were telling me that
I had to come in, that it was an emergency. Again, my paranoia kicks
in, and I told the doctor I couldn't, I was out of money, having to
see the previous doctor got me fired from my job. I figured that the
doctor was just after money. My mother took the phone and talked
with her, and convinced my mother that it was urgent enough, so we
worked out a deal with the surgeon, and I went in to see her. Turns
out the cyst was much worse than the original doctor had said, and
that the medication he gave me could possibly make the infection
worse. The surgeon said something to me that I hoped I would never
hear, "We are going to need to operate on it." I was horrified, but
the surgeon assured me that if I didn't, I could be in very serious
trouble. So, I go under the knife, and was put on pain medication
for the day, 2 pills for 4 hours. My system is pretty resistant to
medications, and after a couple of days, it stopped working. I was
in a lot less pain, and only had issues with muscle spasms every now
and then. What I did hate though, is that the hole was the size of a
baseball, and I had 4' by 2" gause packing in the wound that had to
be changed every day. For the first 2 days, I tried to do it myself,
which resulted in 4 hour long showers, I gave up. I had to have my
mother change the packing for me. I didn't sleep for a week, I'd
start to fall asleep, my muscles would relax, which would cause pain
in the wound, I'd tense up, causing even more pain. So I gave up on
sleep and would kneel on a large stack of pillows and hung around
online all night. I go for my first visit with the surgeon, and she
said good news, it's healing great. But she gave me oxycontin
because I wasn't sleeping. That worked for my sleeping problem
rather well. The rest of the story is uneventful, it took about
another 2 months to heal. Every now and then it hurts, and I just go
for a walk, and sometimes notice a trace amount of blood. I figure
I'll see a doctor soon to have it checked out, to make sure there
isn't a problem, (not that I'm looking forward to it.)
- Date:
- June 28, 2004
Story
First of all, I think this
website is a great resource. Trust me when I say I have plenty of
experience with these cysts and I am not familiar with any other
website that has better information.
I am a 32 year old man and
just had my second surgery for a pilonidal cyst. I first had
symptoms of a pilonidal cyst in 1991. The main symptom I had was
bleeding whenever I had a bowel movement. At the time I was 19 and
not at all sure of what was going on. I thought of all the
possibilities – some worse than others – and chose to ignore my
symptoms for more than 6 months. The bleeding became more and more
frequent and I eventually decided that it was not going away and I
decided to see my doctor. He diagnosed my immediately as having a
pilonidal cyst and referred me to a general surgeon. Great idea -
wrong type of surgeon. I had surgery in 1991 in which the doctor
removed a cyst 6 inches long and about the size of your pinky finger
in diameter. At first, I thought the surgery went great and 2 weeks
after the surgery my stitches were removed. Well, shortly thereafter
my wound pulled apart where the stitches had been and the struggle
began. For the next six (6) years I made at least 1 trip to the
doctor every month for lancing and cauterizing treatments. The wound
just would not heal from the inside out. The outside would grow
together leaving a pocket on the inside which would fill up with
fluid until it began to drain or worse, swell up and feel like a
great big blister. It was at this point when I experienced some pain
and a lot of discomfort. I do not blame my surgeon for this, but
being a general surgeon I don’t think he had the expertise to
properly care for a wound in that area. For whatever reason in 1997,
my wound healed and I was just fine for the next 7 years.
In March of 2004, I was in
New York enjoying a lunch at a great restaurant. Before leaving the
restaurant, I went to the restroom – I will not go into details but
the end result was a toilet bowl full of crimson colored water. The
cyst was back! There was no doubt about it. I could not believe that
I would have to go through all of this again. I was very upset for
awhile thinking about all the misery that was ahead for me. The
surgery, the stitches, the unwillingness of the wound to heal, the
lancing, the draining… I could not find any positive aspects to the
situation. Fortunately, my girlfriend was a great influence on me. I
had not yet found her in 1991 so she did not see what I went through
for all those years. At first she was confused as to why I would be
so upset over a cyst. She had never heard of it before. I explained
it all to her and she began to do research online. After her
investigation she told me to get to the doctor as soon as possible.
I knew surgery was coming and was not excited about that. She
reassured me that surgical techniques have changed and things would
be different this time. I took her advice and as soon as we got back
from New York I made an appointment. My primary doctor referred me
to a colon and rectal surgeon and upon meeting him for the first
time, I was very comfortable. Turns out he is a specialist in
minimally invasive surgical techniques and told me that he would
keep the incision as small as possible. He said that by me getting
in soon after the symptoms began made it possible for him to fix the
problem and save me from going through another ordeal like I did in
1991. I had the surgery on April 23, 2004. This time, not nearly as
large an incision was required. A hole about the size of a
fingernail was left at the bottom of my first surgical scar (about ½
inch from the hole God intended us to have). I was instructed to
soak in a hot bath 2 times a day and keep the wound packed with a
wet to dry bandage. (I used saline). My girlfriend and my mother
helped me change the bandage by poking the gauze in the hole with a
Q-tip.
On June 24, 2004 I was
given the fully recovered diagnosis from my doctor. I could not
believe what I was hearing. Recovery in 2 months when it took 6
years the first time? I credit his minimally invasive technique and
outstanding wound care from my girlfriend and mother for my
recovery. I will continue to take care of that area and shaving the
hair will soon become a regular part of my life as I do believe hair
does play a role in the development of the cyst. Thank you for this
website, it is great! Thank you to my doctor, my girlfriend and my
mother for supporting me and seeing me through all of this. You all
made a trying time much easier to cope with.
- Date:
- June 27, 2004
Story
My name is Kim (aka
kimiecake) I am a 44 year old black female and I think I have
Pilonidal disease.
my saga began in 2002 when
I was 42 years old when my tail bone felt really sore, I thought I
had a spider bite, two spider bites for that matter because it was
on both sides of my buttocks, after a few days I could not sit down,
I had my husband take a look at my "backside" his response "ohh what
is that", I ran to bathroom grabbed a mirror to look at the "ohh" my
husband was talking about, there they were two yellow pus sacs
seating on each side of my ass, I begged my husband to punch a hole
in those sacs, so we heated a needle and I jumped in a hot shower
and he began to poke and prick away at my yellow sacs of pus.
Finally he broke through the skin and I felt immediate relief, he
squeezed out all the pus (and blood), man did that feel good. For
the drainage afterwards I used peroxide and strapped on a super
sanitary napkin half way up my butt!
I summed it up to "40's
suck"
But guess what? they
returned about a month later still naive to what was happening to
me, I went to work, found out I could not sit down, with
embarrassment I told my supervisor what was going on with me and
suggested I go to the Dr.(duhh, why didn’t I think of that).
My Dr. was not in the
office that day, I had to show my bare butt to a Dr. I did not know,
when I layed on my stomach the Dr. actually touched my swollen pus
sacs I screamed and almost came off the table, all he did was
subscribe an antibiotic and gave me pain pills, he never explained
what was wrong(I don't think he knew) later that night the sacs
broke on their own and I actually have pictures, courtesy of my
niece who at the time and was living with us, she skipped a class
that day and I couldn’t think of a better way to punish her than to
take pictures of her 42 year old Aunts buttocks.
I did not have another
flare up until 2003, again my husband saved me with the singer
sewing needle.
It is now June 27 2004
4:50am cst, and yes you guessed it another flare up, it started on
Friday June 25, 2004, I knew it was going to be bad, the sacs are
full I again turned to my husband for help, this time he refuses,
and told me to go to the Dr. (his refusal to assist me in mutilation
of my body may be grounds for divorce).
I called my grandmother
and ask her if she knew why this was happening, she was as dumb
founded as me. I decided to go to the internet and low and behold I
am not alone. I use a dry/moist heating pad and it has eased the
pain a little, I have also been taking antibiotics "Cephalexin 500
MG". and Ib profin 800 mg.
After reading many, many,
many, discussions I'm not sure what I want to do first about this,
but it helps to know there are people out there who share my pain
"literally".
Thank You for this
website.
- Date:
- June 26, 2004
Story
Hello,
I am about 99% sure that
what I have now is a pilonidal sinus. If so, this would be my third
bloody (literally and figuratively) one.
I am 19 years old now (&
male), but got my first pilonidal sinus when I turned 17 in May
2002. I first noticed it when I got really itchy 'down there' and
blood appeared on the toilet paper, and soon alongside that was pus.
At first I thought it was just inflamed skin, and that it would go
away eventually. However, it didn't. I realized it was time to see a
doctor when I went to the mall with my mom. After having split up
upon arrival, we met back an hour later, and on the way to the car,
my mom saw blood on my pants (I'm sure you can imagine my
embarassment and utter frustration). My family doctor told me it was
a pilonidal sinus, or a sort of abscess. I was told to see a
colon/rectal/anal surgeon at a nearby public hospital. I made an
app't, but had to wait three weeks to see him. He looked at it, and
I was told to come in the next day for surgery. He also said that I
would need daily visits from a nurse for wound care and
packing(fortunately, I live in Canada, so I didn't have to pay a
single cent for anything).
Anyway, the surgery seemed
to go okay at first, but when I went for a check-up a few weeks
later, he said the nurse was missing a spot. He painfully cut open a
spot, and yada, yada, yada, within two months after having the
surgery, it seemed to be healed.
However, when I was in
Chicago the week before Labour Day, I saw blood reappear on toilet
paper. It seemed to be a false alarm at first, but eventually I had
surgery for a second time in January '03 - two months after the
doctor had confirmed it was a recurrence. The drawback to universal
public healthcare is the wait time for treatment. Again, I had to
use toilet paper to stop the pus and blood from reaching my pants
(FYI I used simple plastic coated, colourful paper clips to hold the
TP in place). After a second excruciatingly painful operation (he
only used local anasthetic again, which hurts like hell because of
the needle injections required), the healing seemed to go well. In
March, all seemed to be well. And it was, but unfortunately for only
a year.
In March '04 I started
seeing blood (without pus) after going to the bathroom, and I also
felt sore at times. Since it only happened after passing 'number
twos' I thought it was only irritation or hemorrhoids. However, in
the last week, I have been experiencing the typical symptoms of a
pilonidal sinus again, much to my disappointment.
Good luck to anyone else
who has suffered from the wrath of the pilonidal sinus. Feel free to
email me for advice, questions, comments. I would appreciate it.
Thank You,
Devin B. (devinmb@hotmail.com
- Date:
- June 17, 2004
Story
Hi, I am a 23 year old
male living in Melbourne, Australia. I am currently recovering from
my operation to remove a pilonidal cyst. This is currently week 2 of
the recovery and everything appears to be fine. This is the second
cyst that I have. The first came & went with no discomfort (more
annoyance). However this one was quite the opposite. I had felt it
on Thursday 3rd June and thought nothing of it. However, after to
the Aussie Rules game on the saturday and then a party that night,
by Sunday I was not so good. I could hardly move without feeling
sharp pains, I decided to go to the doctor on the Monday morning.
That night, I could not sleep, I ended up sleeping on the couch in
the lounge room as the bed was not confortable. Monday morning came,
went to the doctor, by 11am I was sitting in a hospital emergency
ward. By 11:30 I was in a emergency bed. Doctors & Nurses came and
went, they pushed, touched and prodded. My temper was very well
tested. It was decided they it would be cut out that night, however
in the interim I was placed on a IV drip full of both antibiotics
and saline. The severe infection settled down. At 8pm, I was moved
to a proper hospital bed, however the cyst busrt. Not a good
feeling. However, the reduced the amount of pressure and in a way I
was relieved. I was told that I was 6 in line of 10 patients to have
the same cyst removed that evening. At 11:30pm, in come the doctors
to take me away. By 1am tuesday morning, I was out of recovery and
back in the room. The surgery was successfully. I was able to go
home later that day. However, for the last 1 and a half weeks I have
had a nurse come to my house everyday. In the space of a week the
wound has gone from 5 centimetres long to 3 and depth has shrunk
from 3 cms to 1. Everything is looking good. Being home is becoming
quite boring (I never thought I would say that).
Would like to hear from
some other people that have experienced this. My email is trsbeejay@iprimus.com.au
Good luck to all that are
recovering.
- Date:
- June 17, 2004
Story
This is long, so please
bear with me. I hope the line breaks stay intact. :)
Was first diagnosed around
7 years go, after I first noticed the sinuses (pretty freaked out to
notice two holes near my tailbone). I went to the doctor, and after
little more than a glance, he diagnosed it as pilonidal. And he said
that they almost always abcess by the time you reach 25 and that I'd
need surgery when that happened. As it turns out, he was right.
Pretty good for a small-town doctor. :)
Most of the time, I'd have
a day's worth of minor drainage once every month or so. The only
pain was typically just discomfort while sitting. Very dull and
minor, just annoying. I lived with it until recently. Starting
around three weeks ago, it was draining non-stop; slow and steady.
One of those "need to wash my shorts every day" kinds of things.
Annoying, but I anticipated it going away, in the beginning. But it
didn't, so I saw a colorectal surgeon. He met with me, checked it
out, and gave me the news. It was just as the first doctor had said:
it was pilonidal, had abcessed, and was pretty infected. I could
live with it if I wanted, but it wouldn't really get much better
overall, and could get worse. If I wanted surgery, I had the option
of doing it under local in his office, under local in the hospital,
or under general (MAC) in the hospital. I also had the choice of an
open or closed wound. He went through the pros and cons of the
various options. We decided on a closed wound under MAC, since
caring for it would be easier, and no way would I not be put out,
especially after having a vasovagel reaction with just being poked
there. ;)
I was prescribed an
antibiotic and antiinflammatory medicine to prepare the site. Worked
well, after a couple of days, the draining stopped. Surgery day
came. I was slightly nervous, but nothing big. I was started on the
IV, wheeled into the OR, turned over onto the table, and a second
later was out like a light. Eventually came to in recovery (after
annoying my wife by asking the same question 15 times; not having
any memory capacity under the sedation makes for boring conversation
for the other person). Spent the next day at home, not working.
Mostly on my side on the couch, to reduce pressure. The day after I
did some work from home. This is now Day 3 after the surgery, and
I'm sitting at work (on a pillow with a cutout for the tailbone --
does help reduce pressure). I haven't really had any pain, and I've
been just taking a minimal dosage of my pain medication (more as a
"just in case"). Things seem to be going really well, but we'll see
how they progress. The surgeon expected a 5-7 day healing time, and
said I could return to work the next day. Wanted to be safer, so I
waited an extra two, until I felt more ready. At the first sign of
any trouble, I'm returning home, but so far, so good!
-Ian, Austin TX
- Date:
- June 16, 2004
Story
Well, I discovered my
first pc five days ago on friday. On Monday, i found out what it
was, and had emergency surgery. OUCH!!! Very painful, passed out
once during it from the pain. But the pain was worth it. I am
sitting comfortably in my chair right now, with little or no pain.
Two days post surgery and i feel so much better. I feel bad for the
people that have had to live with a pc for many years. I got mine
looked at as son as possible and removed right after diagnosis. The
surgery wasnt pleasant, but the post surgery feeling is so much
better. I understand that i might have future problems, but right
now i am so happy that i can sit without pain. The surgery was worth
it, but ask for general anestegia, the local anestegia didnt really
work for me. My guess is that its best to be knocked out for it.
Good luck to all you who have pc's.
- Date:
- June 16, 2004
Story
I am a 26 yr old female. I
can't remember how long I've been living with a pc. My mother had
one removed when she was in college when it became unbearable so
I've known for years what it was. I just lived with it and managed
the flareups. In the last two years it became more frequent and more
painful until I finally decided the time was right to get it taken
care of. I read all through this site and any others I could find
with information. I especially read all of these horror stories. I
had surgery 3.5 weeks ago and I've actually got two open wounds
since I apparently had two cysts. I don't want to speak too soon but
I do want to tell all of you who are considering the surgery and
reading the horror stories that so far, it has been SO much better
than I had expected. My first sugestion is to make sure to find a
good doctor. I researched colon and rectal surgeons in my area and
set up an office visit. I asked every question I could think of -
including how many of these excisions she'd performed and what her
recurrence rate has been. I felt very comfortable with her, which
was very important to me since I'd be dealing with her in followup
doctor visits for a long time. She will only do open healing, had
performed "countless" pc excisions, and so far she has a recurrence
rate of zero (that she knows of, anyway). I am still shocked by how
easy my recovery has been. The first week, there was some pain, but
not a lot. I have a mild pain killer that I had to take very little
of. I could go up and down the stairs at my house by the end of the
second day. I did take two weeks off of work as my doctor
recommended and that was good mainly for maintenance purposes with
the tub baths three times a day and just letting my body rest and
heal. My doctor actually didn't make me pack my wound after the
initial packing (from the surgery) came out. I had my first followup
visit two weeks after my surgery and she then said that I'd have to
begin packing it with a little of that stretch gauze just to clean
out the (I forgot the correct name for it) puss-like fluid (my term
is "ooze"). The first few days of that was a little yucky since the
last two weeks I hadn't had to worry about it - but overall, not bad
at all. I'm constantly amazed that it's just over three weeks and
I'm already sitting for long portions of the day without much
discomfort at all. I do have a tush cush (as recommended by the
website) at work since I'm sitting for long stretches and one in my
car. But now, for relatively short periods of time, I can sit on
just about any chair, hard or soft. It's actually gotten to the
point where it's better than it was during the bad flareups. And,
I'm very excited to report that last night was the first time in
over three weeks that I was able to sleep most of the night on my
back. That was one of my biggest pet peeves (other than the obvious
over all yuckiness). Again, I just wanted to say that I'm so
pleasantly surprised by how well all of this has gone. I'm taking
vitamin E supplements along with my multivitamin and I eat very
healthy over all. But like I said above, I think having the right
doctor makes the biggest difference. And while my boyfriend has been
absolutely wonderful and super supportive, his help has really come
more in covering more of the housework and cooking responsibilities
for the first week or two. I've done all of the packing and
unpacking on my own and I was pretty much entirely mobile the whole
time (which shocked me). I hope my story will help those of you
considering this surgery be somewhat more positive and optimistic.
Good luck!
- Date:
- June 14, 2004
Story
Hi! I wrote my story in
the beginning of May. I thought I was recovered and everything was
okay. Well, I went on a bike ride and split my surgical wound, so I
would not recommend bike riding until you know you are absolutely
healed up.
- Date:
- June 09, 2004
Story
i am a 16 yr-old male and
i had an explosion in my pants. my "abscess" exploded with
foul-smelling blood. i finally went ot the doctor and he sent me to
a surgeon. the surgeon confirmed it was a cyst, and he used I and D
to take care of it. however, what pissed me off a lot was that the
guy didn't even give me an anesthetic. he cut it with no pain
medication........i thought i was gonna die and i yelled "s***".
that was in feb 2004, and i havent felt a thing since. guess the
odds were with me. Thank God they are.
- Date:
- June 08, 2004
Story
I am a 23 year old male
now. I had my first pilonidal cyst occcur in august 2002 when I was
in monterey california. I have gotten pimples all over, and
initially thought it was just another random pimple. It was
extremely uncomfortable and I began to get a bit of a fever. On the
second day, my wife poked it with a needle to drain it. We still
didn't know what it was. It drained and drained and drained and
drained. And I felt worse and worse and worse. Finally, I called the
Nurse on duty to get approval to see a doctor off base (the army
clinic was not open since it was a weekend). She told me just to
soak it in a bath and to wait until monday when the clinic would be
open. I told her she was crazy and that I was more or less telling
her and not really asking (for those of you who don't know, the
quality of care at army medical facilities is poor at best. When I
finally made it to an urgent care clinic, I had a 102 fever, and was
in the worst pain I could recall up to that point. They made quick
work of me by opening up the cyst, squeezing out a bunch of gunk,
then packing it with the super thin gauze (about as wide as a
butterknife). That was the most painful thing I had ever experienced
in my life (up to that point again). Apparently the cyst was so
infected that it was about the size of a golf ball. They gave me a
shot of penecillin in each buttock and 10 days of cipro (the same
stuff they gave the people who got anthrax a couple years back).
Luckily, since I already had approval from tricare, and a referral
from the urgent care clinic to see a specialist in the area, I didnt
have to deal with the army clinic at all except for my convalesance
paperwork (a doctor's note saying you don't have to work).
Apparantly, only a military doctor can give you that sort of thing.
The specialist saw me about ten days later and told me that an
excision was sort of premature since the cyst had corrected itself.
He warned me, however, not to be suprised if it happened again.
Then, I would have to have the surgery. As luck would have it, I
would be 18 months and half a continent away when I would be blessed
a second time with another cyst. Luckily, I knew right away what it
was, went straight to the ER, and had it drained and packed.
Unfortunately, I experienced the worst pain in my life in doing so.
This time, the doctors decided to numb the area before working on
it, first with a phenergan and something else I forgot the name of
that makes you nauseated shot, then a lidocaine shot. The lidocaine
shot was the most pain EVER. I would have been better off without
it. Anyways, about a month later, I had the excision surgery.
Unfortunately, it was done at an Army hospital (I was in the air
force, but stationed at an army base at the time, and had no
choice). The surgery itself went fine. The doctor was smart and did
the "open wound" method with the marsupialisation and I had a spinal
anesthetic (sort of like an epideral they give for women in labor),
which was awesome because when I woke up, I had no pain at the
surgery site for a whole day. The annoying part was that getting the
spinal is sort of a challenge (they literally stick a needle in your
spine, and finding the right spot is a bit tricky), and I couldn't
leave the hospital until I could walk to the bathroom and pee on my
own (which was about 3 hours after the surgery was done). The plus
side is that you are awake enough during the surgery that you don't
fall off the operating table and knock out a tooth (which can happen
under general anesthesia), but you're out enough that you don't
remember a thing (or at least most people don't). This is where the
fun starts. Two days after the surgery I start vomiting and shaking.
I begged my wife to call the paramedics. She says by the time they
got there (maybe 5 mins later) I was looney. When I got to the ER, I
had a 104 fever. They gave me phenergan to stop the vomiting. It
didn't work. They tried a suppository. It didn't work. I was hooked
up to an IV for fluids, had all kinds of blood drawn, an ultra
sound, and also had a spinal tap (they stick a needle in your spine
to draw out spinal fluid). Apparently there is a risk of spinal
meningitis from having a spinal anasthetic (luckily that turned out
not to be in my case) . I also had about 5 ER doctors doing all
kinds of strange things to the surgery site to see if it was
infected. Long story short, I was in that hospital for 6 days with a
mysterious fever, whose source was never identified, with an open
wound right between the cheeks. The things that happened to me in
those six days....anyone who has had a stay at an army hospital
knows what Im talking about. But it was bad. Since I've been out of
the hospital (about a month now) things have been going well. My
wife is still changing the dressing every day, and the wound is
still there. I had the sutures from the marsupialization removed
about 12 days ago, and had to take erythromycin for 10 days because
of a staph infection that had developed, but that has been wiped
out. It's kind of funny because when my wife cleans the wound site,
she scrubs really hard with gauze and hydrogen peroxide, but I can't
feel it. It's weird. Anyways, Im glad this website is here, and that
I got to share my story with some other people in the same boat. And
now I don't feel like my experience was so horrible after reading
the other stories (although some of you had it awful easy). It's
been seven weeks since the surgery and there is still a sizeable
wound and Im about tired of it. Luckily, I started 40 days of
terminal leave from the air force 2 weeks afer the surgery, and had
2 weeks of convalesant leave from the doctor. I still haven't been
back to work since the surgery, but after what I've been through, I
deserve the time off! Hopefully I'll be fully functional by the time
my leave is used up (I have 5 days left) and have to start summer
school the 21st of this month.
- Date:
- June 03, 2004
Story
Hi everyone, I'm a 37-yo
man. I had my pc removed in '85, just before I turned 18. Dr was
actually a plastic surgeon who previously had problems with his own
pc, so I guess he knew what he was doing. Anyhow, after the surgery,
he said my pc had been deeper than he thought, but despite having to
remove a large block, he gave me a closed incision, and I have gone
almost 19 years with no signs of recurrence. I guess the trick to a
successful removal is for the surgeon to make sure he gets all the
bits of tract, epithelial lining, etc... because one tiny remnant if
overlooked will probably lead to more problems. My pc gave me more
of a dull ache than sharp pain... I took the surgery pretty well for
a 17-yo boy, considering that was the 1st time I ever had general
anesthesia. I guess what kept my spirits up was looking forward to a
future without the smelly, messy pc. But I wonder if it is possible
that some muscles in my old incision have gotten tight inside there?
I periodically check the site in the mirror before showering, and
there is no pore on the site, not even any discoloration... yet when
I sit hunched over for an hour or so, my old surgery site feels like
some muscles are getting tight in there, and then I have to stand up
and walk around. I wonder if any other posters suffer a similar
problem? Marty, ke6wnh@comcast.net
- Date:
- June 03, 2004
Story
I've had two Pilonidal
Cyst Surgeries, one in 98 and one in 2001. I had both at the
Veterans Hospital and I was treated with the best of care. I believe
my cyst started when I was in the Navy due to the extreme working
conditions and hardened decks of being in the fleet. I've heard of
numerous sailors having to deal with the pilonidal disease. I know
that in World War 2, they called it "Jeep Riding Disease" from all
the vibration of the obvious. Too much horse-back riding could cause
the same and especially in woman. But I believe it could only happen
to certain people based on there anatomy. My theory is it's prone to
happen in people who have more testosterone in that area or in
general. Most people only have one surgery and it's fixed. Than
there is the minority of people who have a "Re-Occurring Pilonidal
Disease" and it takes a surgery every 3-4 years. I've had two and
I'll have my third surgery again in a year or so. I'm gonna push it
as long as I can. I had both my surgeries at the VA in Washington
State and I've been very pleased. I'll have next surgery again when
I feel it's the right time. Basically, one must follow the doctors
orders. Have somebody to take them home and with the right amount of
gauzes,saline and probes. Pain Medication is a must! Depending on
the size of the drainage hole the recovery time could take up to 4
months or so. Simple instructions: Dip the gauze in Saline and fill
in the hole. Two times a day. Of course discharge and blood is
expected and it could be very smelly and gross. Pulling the old
gauze out is very important and it takes patience. The caretaker is
very important and should have a strong character when it comes to
blood. The worst part of having a Pilonidal Cyst is sitting on the
toilet! It's an art. I recommend the "Sit's Baths" as much as
possible! They're very relaxing and important. Pilonidal Disease is
not that bad. It just takes a little ambition and strength. I've got
the "re-occuring disease" and I'm still doing good. Nothing is wrong
with the Veterans Hospitals and I'm proud to have served and I'm
thank ful for the VA administration. "and I still have a nice ass"!
Sincerly, David 29 years old in Washington State. Please e-mail at
boatstaylor@hotmail.com
- Date:
- June 02, 2004
Story
My pain started this past
august, after sitting on my boyfriends couch. i would go to get up
and it would hurt horribly. then it started hurting while driving,
and i drive 40 miles one way to work... so that was quite often. i
am 24 years old & white. i have always had that dimple down there,
but this is the first time it's ever flared up.
i found a doctor to do to-
well, a nurse practioner. i had already researched and assumed it
was a PC. she told me that i was wrong. she said that it was "anal
fissures"- 3 of them. i didn't know what a fissure was, so i said
"ok" ignorantly and went home to look it up and figure out what to
do. i started reading the symptoms and everything, and she was
appearantly wrong. i had none of those symptoms and my problem
wasn't in my anus- it was a couple inches above that area.
i got lucky and found
another doc (doctors are hard to come by around here- they are all
full and not taking patients and i just moved here). he had just
started this practice in december and it was april, so i knew he was
a lil' new. after he looked at it, he said right off that it was a
PC, and that i had no evidence of anal fissures, and that the
previous nurse practioner chic was full of it (i already knew
that;-)
he referred me to a
general surgeon that he knew personally, and that doc confirmed the
diagnoses and scheduled me in for a complete removal, and he said he
only left the wounds open. he hadn't ever had good experiences when
closing them.
my surgery was may 4: all
went well. he made a very clean cut. and a home health nurse came
twice a week for the first 2 weeks... then once a week after that.
my boyfriend is the life saver here. the nurse taught him to do the
dressing changes and he has done all of them from day one. i don't
think i've ever heard him complain either. (i think i know he loves
me now;-)
the hydrogel that is
mentioned on here sometimes does work well. i had a hard time
finding it though. i called pharmicist and none of them seemed to
know what i was talking about. what i found though was Johnson &
Johnson wound healing gel, made specifically for open wound healing.
i would have to say the
hardest part was coming off the lortabs. i don't like pills in the
first place. i only took them continuously for about a week, but my
withdraw symptoms was hell. couldn't sleep at all- ALL my muscles
hurt, especially my legs and my shoulders. and i couldn't use
regular guaze (such as 4X4's and 2X2's). i had to use a 1/2 inch
strip guaze (AKA NuGuaze). the other stuff stuck horribly and hurt
in general... too bulky i guess. but the NuGuaze was great, and i'm
still using it now. and the doc said that it heals much more evenly,
and is more apt to be prettier in the end.
it has now been about 4
weeks. i am still packing it, even though it is pretty close to
being filled in. my concern is that i'm still n pain when i sit. i
see some people saying that after 2 weeks they are painfree. i am
nowhere near that, and i'm kinda starting to worry. but like i said,
the wound is still meaty and soft, and i didn't know if that my be
it. how long- realistically- does it take for the pain to go away on
one that was left open to heal. i know mine was smaller. 6cm in
height, and 2.5cm wide, and 3cm deep were the initial measurements.
now my depth is much smaller around 1.2 cm. i guess i'm worried that
i may be one of the ones that go back in later. i don't want to put
my boyfriend through that again. -I- don't want to go through that
again. i have alot of people telling me i went back to work too
soon... after 3 weeks. i do have a job where i sit alot. was i wrong
to go back that early? could this be causingmy pain? i've noticed it
hurts the worst when i drive.
i hope all of you are
well, and thank you for posting and for listening.
Heather KY AlwaysUnique23@aol.com
- Date:
- June 01, 2004
Story
Hi there, I am so glad
there is a site for people who are or have suffered with pilonidal
cyst/sinus condition. I guess I am in that 5% for complications but
happy for those who are fine. So many out there have no clue when
the complaint is mentioned or they think something is wrong with
someone’s hygiene or too overweight and so on. But I have meant a
few people who have come from all racial backgrounds and weights,
even though some it is more prevalent in than others, I been told. I
noticed it in my early 20’s and had surgery into my late mid 20’s,
it took about 9 surgeries and ended up with plastic surgery and
thought my lower back,upper rear looked like frankenheiny. Later I
was told that I should have seen a colon rectal specialist, he did
do the last surgery and cut thru the previous plastic surgery that
was done before, by a general surgeon who meant well..I was afraid
to date again, thinking in this society how beauty is so emphasized
and today is even worse, but to clear my sanity, I told myself there
are others out there fighting their own demons that were throw them
and if no one could deal with this, then I don’t need them in my
life. I still have pain and yes I have read some of the letters and
I understand about bowel movements that can still hurt, sitting for
long periods of time or standing and the speech ‘sometimes they come
back’ and you’re like, huh? Even with aggressive treatment. When I
asked one of the doctors are there any patients to form a support
group for the severe sufferers, his reply was he didn’t think anyone
wanted to talk about it, cause it is so personal. So I only met a
couple and heard of more because of mom working in a hospital and a
distant cousin ended up with one. So if anyone want to write on
occasion and share pain, humor, medical or wanna vent, drop me note
sometime. Thanks and have a nice day! schvev@aol.com
- Date:
- June 01, 2004
Story
Hi my name is Kelly and I
have been dealing with my pilonidal cyst for about almost 4 years
now. I had surgery last June to remove they cyst. After they removed
it, they stiched it up and weeks later I had the stiches removed.
For 6 months I felt great. I was pain free for the first time!! It
felt great. Then the pain came back. It seemed to come back once a
month and then I felt great for 3 months and once again its back. I
don't regret the surgery but it seems like there is no guarantee. I
was wondering if anyone out there had any advice for me. Is there
something I can be doing daily to prevent these flare ups?? Should I
get a second opinion?? Have surgery again?? Please help!!! Thank you
for reading my story.
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