The Pain In My A** That Will Not Go Away

This story is long. 

I had a Pilonidal and I am STILL dealing with the aftermath.  I noticed the cyst around November, 2007.  I thought it was an infected hair from the tanning bed.  Man, oh, man was I wrong.  I had surgery to remove it on June 2nd, 2008.  It was a "Z Plasty" which for lack of a scientific understanding is when the cyst is removed then the skin is closed.  I was told the cyst was like an iceberg, small above the skin, but very large underneath.  It went to the spine.  I have a nasty Z scar, Zorro left his mark on my backside.  I was told that it was an out patient procedure and that I would not be spending one day in the hospital.  When I woke up in recovery I was informed that I would be staying.  It required me to stay in the hospital only for one day.  A drain was stitched in me to help with the drainage.  The drain had a clot in it at one point but the doctor was able to remove it in his office.  It was painful but it seemed to be healing nicely after the clot was removed.  I thought all was well until about the end of August, 2008.  I started having massive drainage.  The drainage was creating open wounds along the previous incision sight and releasing foul odor and liquid.  It was so bad that it would soak through a maxi pad and my jeans.  I am in college and let me tell you that this is NOT the way to make friends.  It was very embarrassing, down right annoying, and costly because it ruined so many of my pants.  I was living by myself on the other side of the country, attending college when this was happening.  I was told that I needed surgery number two to correct this.  I was again told that it would be an out patient procedure and that I would not be spending one day in the hospital.  When I woke up in recovery I was again informed that I would be staying.  I ended up spending six hellish days in the hospital.  The surgeon had opened me up like I was a pumpkin.  My incision was 11cm wide and 12cm deep, down to the spine again.  The first time I saw the wound in the mirror I nearly fainted it was so large.  I am not weak hearted either, I myself am studying to become a MD.  The first time the packing that was placed in my wound by the surgeon was removed was the MOST painful thing I have ever experienced in my 20 years of living.  I have never given birth but I like to think that I can handle child birth after experiencing the pain brought on by the packing removal.  I tell everyone I gave birth through my back.  I was then placed on a Wound Vac.  Since I was 2,500 miles away from my family, I had to have home health care come every other day and changed my wound dressing.  The dressing changes in the beginning were like an awful visit to the dentist, but after a few weeks the pain subsided.  While all of this was going on, I had to medically withdraw from school and return home.  I continued to have the Wound Vac until the middle of December, 2008.  All seemed well until around June, 2009.  I was having the same kind of drainage happen along with some tenderness of the area.  I went to my surgeon who had done the first surgery and he said I needed a scan of the area.  The scan confirmed my worst fear and on July 17, 2009, I had my third surgery.  This time I knew I was going to be staying in the hospital.  I ended up spending six more days in the hospital.  This time the incision was 12cm wide and 14cm deep, down to the spine again.  The removal of the packing was also my worst enemy again.  I was put on another Wound Vac again.  I was just taken off the Wound Vac around the end of September, 2009.  Around two weeks after being taken off the Wound Vac, I started getting the drainage and tenderness of the area again.  I have to get another scan tomorrow to confirm if my worst nightmare will again come true for the fourth time. 

I know that other people suffer through worse things than Pilonidal Cysts, such as cancer and etc, and I applaud their strength.  I wish I had their strength.  Most people I know do not understand why this cyst is such a big problem for me.  They do not see it as a serious medical condition.  In fact before I had my first surgery I did not see it as a big issue either.  I wish medically they knew more about Pilonidal Cysts.  I do not want even my worst enemy to go through what I myself have gone through because of this cyst.  This cyst and recurring drainage has affected my whole life.  My life has been turned 180 degrees by this problem.  Nothing is the same for me as it once was a little of a year ago.  I want my old life back, I do not want to deal with this anymore.  I feel that I can not deal with this anymore.  It not only takes so much out of me physically, it takes so much out of me mentally.  If you read all of this, I thank you for listening to my story.  I hope your story is better than mine.

DMBdreamingtree DMBdreamingtree
18-21, F
15 Responses Oct 24, 2009

I am 43 years old and have had Pilonidal disease since I was 17.

The cysts used to come and go but now they are open permanently. I have one on my right butt cheek and one inflamed at present on my left cheek. It hurts like hell, as most of you have mentioned. I can't remember when last I didn't have toilet paper between my cheeks to absorb the puss/water/blood (which I change about 3-4 times a day).

The main thing for me is that the tears don't close, as when they do, they get inflamed and I have to deal with the pain till they pop and start draining.

When they are inflamed I take pain killers as its not the bump where the puss is building up that much, but the soft point in the skin where the tear will occur, that becomes really sensitive to the touch so putting on underwear or pants is extremely sore. I am on day 4 now where I have not been able to walk up right.....

When it is inflamed I take 2 showers a day as I have found:
1. The really hot water provides temporary relief
2. Lots of Soap left for a while, softens the tear area and speeds up the bursting process.
3. Putting my own skin (finger) on the soft area where the tear will occur has opened it before so I always try that in the shower.

I live with this every day and I feel for all of you especially the young people as this seems to be a lifelong problem.

I have not and will not have any surgery as an alternative but also wish the medical fraternity to spend some resources on this disease!

Sympathies and good luck to you all!!

4 surgeries?! Appalling. Doctors just will not admit they have no idea what's causing the cysts. How barbaric of them to keep cutting out a huge chunk of your body in hopes of "fixing" it. I had the cyst over 20 years and had surgery once. When the one surgery didn't work, I knew I was never having another. Eventually I learned that this cyst is actually caused by hormone surges. It's no wonder so many of us get it not long after puberty. Mine first arrived when I was 15. Try to use iodine on the first sign of tenderness so several days (diluted in a little water so you don't burn your skin). Iodine has kept me from having to use antibiotics at all. Pilonidal cyst is neither here nor there because I get another cyst exactly like the one on my tailbone but in the center of my chest, sometimes they are flared up at the same time. It's gotten much better when I went on a Paleo diet and started eating grassfed meats. Now I tend to get only some surface inflammation (cellulitis) that's not very deep next to the surgical scar. I'm working to get rid of that too. It's a slow process.

Im 14 and had this since i was born and had noticed it when i was 12, and it was scary because i didnt want surgery since i was only 12 and put it off and it never healed so i ended up getting it last year. The wound opened twice but its probally not bigger than half a pea, its easy to fix i just put sugar in it. and it goes away. Try that?

I really feel for you. Been dealing w mine for sixteen yrs. had one surgery .came back. Drains constantly. You are so right that it affects you mentally. Get them all over down there. They hurt sooo bad

I think I was one of the lucky ones. I am also in college and I had one. I was in pain for days. There was times when I couldn't even leave my bed. One day after I was done taking a shower, it finally popped. I had my roommate help me clean it up (which is embarrassing, but I can't see back there) and then use a bandage on it. We didn't use any neosporin or alcohol. Just cleaned it up with baby wipes and let it drain. I wore a pad for a couple of days and finally it healed on it's own. Now I have no problems and I live my life on a regular. I'm glad mine was easy to handle and I am sorry for how it was for you. I think the best thing for anyone is to have it pop in the shower and deal with it yourself. When you go get surgeries, you are wasting your money and the problem just comes back.

I'm sorry to say my experience is no better than yours. I was just informed yesterday that i need a fourth surgery as question is are you sitting? I have not sat down in over a year because of how painful it is and the amount of blood that comes out. This is ruining my life...

I'm 14, and have one of these.<br />
At least in pretty certain it's one of these.. I haven't been to the doctor for it yet. :l<br />
Mine is under the skin on my tail bone, and it popped tonight.<br />
I originally got it last month, and it went away within a few days or so, and it came back three days ago.. I believe it's from an ingrown hair.<br />
Does everyone's come back multiple times after surgery? Or just some people? Am I going to need multiple surgeries?

I had mine last year (im 14) and mine never came back...hopefully it stays away D:

I am 16 years old and today i went to the doctors because about 4 days ago i had lower back pain and then the upper tail bone pain started. I thought a couple of ib prophen n relaxing would make it go away but after 5 days of excruciating pain i couldnt stand it. So when i went to the doctors i was informed that i had a pilonidal cyst. My doctor explained what it was but told me that because it just started he was just gonna put me on anti biotics. But if it got worse i would need surgury. Right now im trying to sleep but in any position i lay i get a shooting ain in my butt. I have a heatting pad on and ive also took a hot shower n lots of pain killers. Nothing seems to work. My family thinks im a baby because i complain so much about a little bump on my butt. Thats not the half of it thats why im glad to here that other people understand my pain. Hopefully i dont have to go through unsuccessful surgury like u guys. I hate surgiry because the last one i had on my leg was horrible and i was in the hospital for ovrr a month plus theropy. Pray to god the meds. Work

My 16 year old son's going through the same thing! He developed a Pilonidal cyst last fall , went on antibiotics then developed a perineal abscess last January. He had the abscess drained surgically then went home the next day. The abscess wouldn't heal properly , he went in and got a wound vac for that. While recovering from the abscess his Pilonidal acted up and he got yet another wound vac! This has been since late February and he's now getting wound vac dressing changes twice weekly. After reading the above I didn't realize this would be an ongoing process for him! He is in high school and is on the mild end of the autism spectrum on top of it all. He has a very low threshold for pain as it is although not from the Pilonidal cyst but from the whole process involving his I.V.'s. He never needs pain relief after the dressing changes. I worry that he will not graduate as he is quite behind , even with a home tutor.

I know that this post is a few years old, but I was doing my searching for treatment and ran across it. I am also a college student. 3 surgeries down, and I'm guessing that a 3rd may be in store. My last surgery was done at the Mayo Clinic in Rochester, MN, and I had a great surgeon, but this thing just doesn't seem to want to stay closed. After my last surgery it seems to stay closed for a few months at a time and then slightly open, and then close back up in a week or two. But after about a month here in my junior year of school it has opened up again and hasn't closed back up. I totally know how you feel. It feels horrible complaining about something that seems so minuscule, but it honestly SUCKS. The fact that you cant sit down without worrying if your going to be in pain, are enjoy activities for more than a few hours before you have to go change your dressing. I've always tried to stay positive with it, but it gets harder and harder the longer it persists. I'm glad (not wishing this for anyone) that there are other people out there though that have gone through the same thing that I have. I've always felt like i've been the only one with a condition this bad. Stay strong Pilonido's! I'll do my best as well.

So how are you doing now? My son is schedule to have another surgery but I'm reading as much as I can. This will be his 4th time. There has to be an alternative way to conquer this cyst. Hirsute people seem to have problems with ingrown hairs causing the cysts. I'm thinking of buying Furunkle drawing salve. Has anyone here had an experience with drawing salve? My son has been to the wound care center and they would debride the ulcer that was left after surgery - he did this for a year and things healed up but - another cyst has developed. Will this never end?

You poor thing! Hang in there, reading your story is making me thing twice about having to go thru this surgery again. <br />
<br />
1st had problem in 1990 and the Dr sent me home with antibiotics and pain meds. Told me to soak it for a few days and I should be ok............sure enough within a week I was feeling much better. Problem reappeared in '92. My primary care doc never even looked at it just sent me to a surgeon. The surgeon said I needed to have it excised and the tracts removed, out patient, 1 day off work..yada..yada..yada.....I do not know why they wanted to rush into surgery???They never once suggested just taking some antibiotics and some pain meds short term and see if the infection would go away like last time. Instead I foolishly took the surgeons advice. Surgery was terrible, huge chuck cut out of my buttucks stitched back up with a tube out of my butt. Over the next few weeks the stitches kept opening and draining "stuff"........after 3 or 4 months the Dr said the cyst had grown back and said I needed another surgery. WTF....I said NO WAY, I'll use antibiotics and pain meds when it gets bad and wait to it heals up. Well that approach has worked until last year. In fact I went thru most 1995 to 2008 with very few problem. Unfortnately my pilonidal cyst(disease) problems have returned more frequently (4 times in the past year) and the antibiotic/pain med treatment is not as effective. It is looking like another excision with the wound left open. The scary thing is that I have 2 sinuses(holes) that are open and draining, one at the top of the buttocks but the other is only a few inches away from my anus. I just cant stomach the thought of the knife cutting so close to my anus (which is completely healthy I might add) and then dealing with the healing process. <br />
<br />
So reading about your terrible experiences makes me really question whether I can go thru with it again.I hope that you are doing well and have found a procedure that was a success for you!<br />
<br />
Peace-<br />
<br />

The surgeries are bad but the worst part is the recovery. I wish medical advancements would be made to help those with this problem and to stop others from experiencing this problem. I hope you get better Henry1977.

I have had 5 surgeries on mine. It sucks not being able to do the things you once did, but you gotta be strong.

The cause of cysts is unknown but they think trauma to the area might be a factor. I'm not sure why my area will not heal properly. The actual cyst itself does not keep coming back, just the area around is not healing properly.