Help: Still Chronic Pain near tailbone 2 1/2 years after Pilonidal Cyst Excision

So glad I came across this thread.
I had two bouts of surgery for pilonidal cysts.
Ever since my second surgery my scar has remained looking swollen, although it's not red or aggravated in any way. I cannot sit in certain positions for long, sometimes it hurts to even lay on my back. Often feels like I'm sitting on a rock. It feels tender, as if the coccyx is bruised or something.
I've had an MRI but nothing was found. Don't know what to do anymore and just end up crying about the pain and getting nowhere at the doctors.

I had surgery 30 years ago and I still have a ton of pain in my tailbone area, especially if I sit for any length of time. I have just chalked it up to the cyst I had. I will be asking my dr about it when I see her next month.

This issue sounds like sciatica.. pain across the hips and often down the right leg.

This issue sounds like sciatica.. pain across the hips and often down the right leg.

Hello! First time posting!

My son had his PCE about 3 months ago. After the surgery the Surgeon and his GP advised me to rub the scar tissue and surgical area 3-4 times a week with Vit E oil or Coconut oil (depending on access and comfort). I apply a warm compress (normally a heating pad for about 15 minutes prior to massage) Then for another 10 -15 I do a deep tissue work out on him until i get tired or we both get of of the process.

My son is 23, had the cyst since high school. We are a hair lot and are waiting on insurance to process laser hair removal.

Wow - I've had this for 30 (yes, thirty) years. An osteopath told me the nerves had been cut during my pilonidal op.

I too have had this surgery 35 yrs ago, runs in my dad's family 3 of us so far. Best advice I can give is to warm soak your feet often it helps to relax your leg muscles, don't sit to long with out getting up to walk around, about an hour. Always sit on something soft like a cushion or folded up blanket helps with the sharp pins and needle pain you get when sitting too long. Passion flower herb helps wonderfully to take off the sharp pain and pressure you might feel.My cyst was 12 inches long and wrapped around my 2 in extra long tailbone, was told it was the most difficult one my dr had ever removed in his lifetime and he was 65 yrs old...All these recommendations were from him, God bless him.

I am 17 year old guy. I had my surgery in June 2016 and I was completely recovered in November 2016. Its February 2017 but still its hard for me to sit for more than 1.5 hours. The pain is very much when I sit or sleep on my back for long hours. I don't know what to do. I am having examinations by the end of this month which requires constant sitting for 3 hours (that too I am having a total of 6 papers).

I have COME UP with a new SOLUTION (well, its effective for me). I had started running for one hour since last 1 month. And really my pain has reduced. I don't know how its happening but its very effective. Hoping that till my exams my pain disappears...

hello! i have the same issue. i have a a pylinodal cyst removed twice in the same spot. lower back (tail bone area). severe nerve damage because of it... ive been having this pain for six years. started when i was 16. (now i'm 21) ive been going to a national hospital in DC. and been getting ketimine infusions there. they truly do help. it is literally the ONLY thing that has helped the pain. i can walk, sit, run, have a normal life. no issues after getting the infusion. but my dr (that treats me with the infusions) also gives me Lyrica. that medicine, is more for the actual nerve damage issue. Lyrica will fix the issue. and the ketimine infusion will help the pain. with the infusions i can now go 7months with no pain and a normal life. ive been getting the infusions for 6yrs. i'm the first one to get those infusions at the youngest age for the longest time ever. no side affects. i truly hope this helps! and it has helped me!

My daughter is suffering with the exact same symptoms..the only difference is that her incision opes every couple of weeks..smal openings but scary and painful...surgeon and would care specialist say to clean it and apply a diaper rash like cream. The pain is constant!!

I had my surgery june 12th 2017 including the sinus track removed stitches removed june 20th then 23rd the whole incision busted open and my surgeon was out till July 11th had to go to ER on July 4th paged my surgeon said to pack it send me home then seen him in his office on the 11th he said looked fine had nurse packed it it was draining before I went to his office and after I same when I got home but he said it wasn't I knew iylt was so did the nurse.i was ordered to stay off it for 2 weeks only on belly or side till I go back the 25th no antiobotic which now it's is terribly infected my Family dr did give me antiobotic cause he looked at it and agreed it was badly infected called the surgeon of course he was out his nurse suggest I go back to ER right away saying my pain should lesson every day but it's only getting worse with yellow discharge and all red and swollen so went to my pain management dr for a follow up on neck issues I've had for years he seen my incision also and said it was badly infected and get back to my surgeon saying me being small thin could be why it's taking so long to heal but my surgeon needs to do something about the infection so now I'm laying on my side as that is all I can do anyway just the pain is so intense it's so unbearable nothing helps taking oxycodone hydrocodon and Tylenol still have pain so bad makes my throw up especially when it has to be packed 2 times a day.any one know when I should get some realive???? I got back to my surgeon the 25th of this month and he don't do nothing my family zdr is sending me to wound care center cause it shows no signs of healing at all as of now any idea if this is normal almost 6 weeks and no healing at all only excuse I hear is that I'm small and not much meat on me I can't deal with this pain hurts in my lower back and legs also I just need answers if anyone experienced anything as to my situation please advice I'm going crazy here thanks in advance

I am experiencing this same exact problem myself. No good feeling at all

I was 23 years old and in the Marine Corps at the time and I had Pilonidal Cyst surgery and the piece they cut out of me from the crack of my butt all the way up to L4. He showed it to me and it was the size of a piece of pizza with a large Golf Ball on it. He cut out all the muscle and tissue in that area. Then he closed me up, and after a week in the Hospital then home for 30 days then back to my unit. When I was up for a transfer to go overseas which was great but my lower back was killing me with that back pack filled with extra ammo and then a forced march for 18 miles. My back was bad. When my time was up and I was home and at the gym working out I felt a pop in my lower back. I was referred to go and see a Neurosurgeon and he sent me for an MRI and sure enough, L5 was popped like a ballon. He said we have to do a laminectomy on L5. When he was done he told me that the Doctor that work on the Pilonidal Cyst took out too much muscle and tissue. A year later L4. the same thing happens and the pain you talk about, the deep sting pain. So I had to have a second surgery then 2 years later L3 blew out, so I went into Boston and the surgeon told me we are going to Fuse L3, L4, and L5, S1. Sure as long as it takes this pain away. I am 6'3" 230 in High school and in College. Played Football for 13 years then I went in the Marine Corp and my back feel apart. Now as of today 8/23/17 my L1 and L2 Discs are ruptured and I will need another surgery. I hope with the new technology they can replace the Discs with the new ones they have developed or his he going to Fuse me at L1, L2 to L3. I am in the process of filing for my VA Benefits because all my back problem started after that Pilonidal Cyst removal and I have had 2 surgeon comment that they took out too much muscle and tissue. I hope you find someone that can figure out your pain. Boston has some great Doctors That might be able to help you. As for me, I have been a Disabled Veteran since 2009 and they better pay up on my VA Benefits for screwing up my back.

I had a pilonidal cyst removed in April, 1971, which was over forty six years ago. The wound drained for over a year. When I showed the incision to another surgeon over a year and a half after the surgery, I could see that he was not pleased, and would have performed the procedure in a different manner. Every day, for the last 46 years, I deeply regret my decision to have that optional surgery done, as I've had pain in that area, especially when sitting. I could have lived with the lump in that area, which only flared up one time. My idiotic general practitioner told me that an abscess would form, and he recommended a surgeon who had taken my appendix out, as a child, some eighteen years earlier. I learned to my regret, that the surgeon was better at removing my appendix, than doing the pilonidal cyst procedure. I sincerely regret not suing both of them for malpractice. I've had pain in that area for over four decades, plus a chunk of my anatomy was just torn out. I really didn't need this to occur. If people can live with bullets in them, then they can live with a cyst in them. I can't believe how stupid and impulsive I was, when I was in my twenties. I should have investigated the procedure further, including the risks of that procedure. Unfortunately, there was no internet in those days. As the saying goes, "Never again".

My daughter has undergone her second surgery regarding a pilonidial cyst developed on her tailbone. The canal has finally closed after a year, with the help of a wound care doctor. Unfortunately this has not relieved her extensive pain. Just when we suspect that she’s better and ready for physical activity the pain returns! Help!