My pilonidal story - still extreme pain especially when standing up from sitting

#1
Hello everyone.

Let me start off by saying that this situation is haunting me for years and I come here to see if anyone else has gone through something similar and possibly a solution.

I'm 30 years old.
I was "diagnosed" with pilonidal cyst in 2008 when I was 19.
The doctor (plastic surgeon) told me that only way of treating this is surgical procedure and not to try anything else.
I had some pain here and there when sitting but in the meantime, I was "adjusting" my sitting ways and eventually pain wasn't causing much discomfort, I had some drainage here and there but nothing particular.
I had no extreme pain and swelling and infection like I read a lot of people have.
Fast forward 6-7 years, in 2015 I had blood drainage almost every day. I decided to do the surgery.

Surgery went okay, stitched (I think it's primary closure, closed wound, nothing fancy like those flaps, clefts, romboids etc that I keep reading about), 6 days in hospital, 2-3 more weeks laying and resting at home and a month after surgery I was fine, still got pain though when sitting.
However, several months after surgery, I started noticing almost every time when I stand up from sitting position, a strong pain at the tailbone. I'd say 7/10 pain. I have some memory problems and I'm not sure if this exact pain started few months after surgery or I had it even before surgery.
And this pain was happening every time after sitting for more than half an hour. I had no pain when doing activities like running, hiking etc. I was able to lay on my back fine.

This pain continued for next few years. I kinda decided I'm gonna stick with it, because I went on regular checkups at the doctor who operated me and she kept saying that I was fine (wound properly healed, no discharge and no pain when she touched me at places).

Anyways, pilonidal cyst formed again last November. This time I had an infection and I had extreme pain, wasn't able to lay on back at all, not to mention sitting. 3 days I was in agony, went to the emergency rooms 2 times in 2 days and pain finally went away but I was told I needed another surgery.

So at the end of this February I did another operation. Again stitched (another doctor now, at the same hospital like first operation) he didn't even discuss this with me.
5-6 days laying in hospital. I was released and several days after surgery part of the wound opened, 1.5cm diameter hole. I was told to wait for it to heal but 3 weeks passed and there was no apparent healing happening so doctor decided to stitch it. After that stitching I was in severe pain for 3 days but it ended.

Now, more than 2 months after surgery I still fill that pain after the first surgery, only this time the pain happens even after 5-10 mins of sitting, and especially after rising from sitting. Now the pain is even 9/10. 2 months I'm still recovering, I barely sit, I barely lay on my back, only sides and stomach. There are days that, apparently, I can't stand it anymore to sleep on my sides so I automatically turn on the back but extreme pain wakes me up from sleep. Pain lasts few minutes until I turn to the side.

I started suspecting cancers, chordoma, squamous cell carcinoma etc, tailbone damage and whatnot.
The best I can do to describe the pain is like DEEP, DULL, BRUISE like pain. I know everyone has different pain tolerance but when I say 9/10, it's 9/10.
When I tell the surgeon this, he shrugs. At the regular checkups, I lay on my stomach, he touches me going from the top, over the wound, but I don't feel pain at that place.

Because of my hypochondriac thoughts, last week I did an MRI, and an ultrasound. When I was doing the ultrasound, the radiologist was going over the wound, and I had no pain. However, when he went lower, and started pressing upwards the tailbone I felt the extreme pain. When I felt that pain, I said to myself "ok finally now something will show up and this doctor will pinpoint the cause" BUT I WAS WRONG.
Both found nothing malignant, nothing wrong with tailbone, found some inflammation and fibrosis which was apparently expected according to the radiologists.
They can't explain to me why I feel this kind of pain.

I'm at a loss. I really don't know what to do anymore. When you read about on the internet that this situation affects quality of life, it doesn't really trigger until you feel it for yourself.
My best theory about this pain is that it is happening because of my "adjusted" sitting positions for years. I think did some big damage to that area but I don't understand how the MRI and the ultrasound can't find anything.
 
#2
I had a closed excision in February and I have to go back in in a few weeks because they didn't get all of the cyst out. It sounds to me like you have a cyst way down deep in there that would explain the pain I know prior to my surgery if I sat too long the pain would get intense whereas walking never hurt. Most surgeons are scared to really dig deep in there near your anus because God forbid they dont know what there doing and end up nicking something you could end up with a colon bag....my advice would be to see a doctor that specializes in pilonidal I know some of the out of state ones can even do diagnosis threw pictures. I completely understand your frustrations I hope you find answers stay strong
 
#4
I had a closed excision in February and I have to go back in in a few weeks because they didn't get all of the cyst out. It sounds to me like you have a cyst way down deep in there that would explain the pain I know prior to my surgery if I sat too long the pain would get intense whereas walking never hurt. Most surgeons are scared to really dig deep in there near your anus because God forbid they dont know what there doing and end up nicking something you could end up with a colon bag....my advice would be to see a doctor that specializes in pilonidal I know some of the out of state ones can even do diagnosis threw pictures. I completely understand your frustrations I hope you find answers stay strong
Yes, one of my theories was that the cyst went way deep since I didn't treat it when it first showed up and I waited 6-7 years... that's my biggest regret in life.

But wouldn't it show up on an MRI or ultrasound? They scan deep, especially MRI. I was told they showed no abscesses...

Is there another test that can check deeper?
Have you researched the cleft lift at all?
Yeah, I read about this thing a lot on the internet, I mentioned some of the procedures in my post... but I'm no doctor and I'm not able to find out which one would suit me best.
Also doctors here are full of ego and if you start mentioning procedures to them they'll go offensive against you.
I get a lot of frustrations when I read about pilonidal on the net, because there's no universal solution. There is always contradictory information even for closed/open wound, shaving/epilation, different procedures...
 
#5
An MRI wouldn't always show it I know there is an MRI you can get done with a contrast dye that is injected into the site and that will show the sinus tract if there is one
 
#6
An MRI wouldn't always show it I know there is an MRI you can get done with a contrast dye that is injected into the site and that will show the sinus tract if there is one
I don't think that will be possible since there is no opening now. The contrast used is Iodine.
I mentioned fistulography x-ray with iodine contrast to my doctor but he said it cannot be done since there is no opening now.
 
#7
Might be time to get a second opinion when I discussed it with my doctor there wasn't a need for the cyst to be open in order to do that. Also off topic I had that done for my hip and obviously there was no opening there lol
 
#9
Speaking only from my experience- I’ve had just about every type of procedure out there and cleft lift is the only one that worked for me. But again, everyone is different. I’d encourage you to check out this website if you haven’t already. www.pilonidal.net
Thank you, if there comes a need and I sense it will, my next procedure will be cleft lift.
 
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