cyst periodically draining on its own from hole on lower back after a doctor cut and drained it

nashvilleman202

New Member
I am new to this website so forgive me if similar threads/posts already exists.

I wanted to share my story and see if anyone else's story is similar.

So, obviously I have a pilonidal cyst/sinus/abscess. I first noticed it four years ago during my freshman year of college. I noticed that there was tons and tons of drainage occurring from a hole above my tailbone. It really hurt so i ended up getting it cut and drained and it felt a lot better for a few months. Unfortunately, I noticed that the two holes on my naval cleft (crack) were still there and the pilonidal sinus was never going to stop becoming infected unless those two tiny holes somehow closed. I kept both the area on the crack shaved and the area around the hole that was from the initial incision and drainage.

Fast forward a few years, and the cyst would periodically become more infected and drain on its own and cause discomfort. I knew it was infected but I knew it was fine if it was draining. It was very annoying, but I would put optifoam medical gauze bandages on them (which are WAY TOO expensive.) A nurse told me to start using unscented pads for women's periods. I thought it was weird but they did the job perfectly. The pads would catch all of the drainage. I went back and forth every 4-6 months or so needing to this. The cyst would stop draining and not cause me any trouble but then I'd start to feel more pain and eventually would drain on its own.

Has anyone else experienced the cyst draining on its own from an incision site that was cut by a doctor?

Fast forward to now. The only thing that I have found to work fairly well in decreasing the frequency of infections is turmeric. I have tried taking multiple brands of turmeric but the ONLY one that actually works is the YouTheory turmeric from Costco. It's expensive but its formulated to have 95% of the curcumin complex. Most other turmerics don't have enough of the curcumin. The turmeric has literally caused some hair to slowly but surely make its way out of the cyst/sinus. Unfortunately, it still flares up even with the turmeric.

Has anyone experienced any similar situations?? Any tips to make it stop getting infected and draining?? I am still shaving it but it still gets infected and hurts.
 

IndyDad

New Member
I limped mine along for 16 tears thru flares because I had a bad experience with a particularly rude general surgeon when I was 18. There is a sinus inside, some hair may come out some won't. As long as something is in there it won't go away

Closing the holes at this point is probably about the worst thing you could have happen. That drainage is allowing the pus to exit your body, if the holes close the infection will get much worse and the sinus tract will grow inside your body, possibly making a new exit point. Google abscessed pilonidal. So those hairs in there prevent the hole from closing but also allow bacteria in, keeping any open wound clean is hard, made even worse when it's directly north of your rectum lol. The hair will continue to grow in there even if you pull some out. I've read where some Drs in other countries will remove the hairs but rarely does that last long because then the hole heals and there no way to ensure sinus is clear. I&D or incision and drainage is also inherently not a long term solution for many people but it's what ERs can comfortably do to provide relief. It's usually a lot of hair and or infected tissue inside that needs to be removed for it to be successful.

Other options, invasive surgery like cleft lift is for now the gold standard. Pit picking is a compromise, they use a punch to punch out a small amount of skin around each hole, then clean the sinus end to end and let it heal. This is usually much more successful than I&D long term but recurrence is around 20% I think. Some surgeons will do this in office otherwise it's a cheaper operation with much less downtime and healing time. Then the laser method is an enhanced version of pit picking but they cauterize the sinus inside with a laser to debride any infected tissue and ensure it's clean in addition. This so far has proven to be as or more successful than cleft lift in patients that can have it but again much less invasive and less recovery time. There's also an endoscopic version of pit picking where they use a camera inside the sinus to ensure its clear.

Shaving it will likely not help as the hair is already in there. I had the laser operation in Chicago and 8 months in couldn't be happier. Was back at work 3 days later. I figured opting for the least invasive option first was best and if I had to I could go to more involved options later. If you can you need to get it fixed by a colorectal surgeon.

Hope my long-winded answer helps, best of luck and hope you find relief.
 

nashvilleman202

New Member
Thanks so much for your reply!

I have already had an I&D and agree that the incision site remaining open is helping with the drainage. I guess I am just tired of the drainage on my lower back from the incision site but should be thankful that the puss can drain out.

I naively thought that somehow the very small pits on the naval cleft would close but I don't think they ever will. I didn't think about infected tissue already present that would create issues even if the pits closed.

I had one colorectal surgeon push a small wooden stick through the I&D incision site that led to the pits at the cleft. I was shocked at how hollow and long the sinus was! Unfortunately, that only helped temporarily because not everything could be removed.

I had not heard of the laser treatment but will definitely look into it! I agree with you that the less invasive option is the best first step. I am just thankful I never had a surgeon talk me into an old-school surgery where they leave the wound open to heal.

Do you know anything about the costs of laser vs. cleft lift? I don't trust many physicians near me to perform the cleft lift so I am almost certain my insurance will probably not cover it. So unfortunate, but not much one can do about it I guess.
 

IndyDad

New Member
I want to say mine was in the $12-14k range before insurance but that's not what the insurance paid or even close. I think I paid $400 out of pocket for mine. I do think most insurances cover this, it's necessary and not cosmetic. With pus coming out that means your body is fighting an active infection, they can't deny treatment for that. My Drs office offered to let me know what I would pay out of pocket and ensured it was covered before they did it at Rush University. I had seen a surgeon locally right before I had the laser operation who tried to convince me to do open incision. He said he did a few a year and that seemed to work best. That's not what you want to hear.

Those pits can and will close if they punch them out and clean the sinus up. I guess my advice would be start making some calls and see what's covered. You don't have to live with this anymore. If you have a local medical University hospital that's good nearby I'd start there. I'm not sure how far Chicago is from you but they have several very good surgeons there including Dr. Govekar who did mine and does them regularly now. From what I've read on this forum it's pretty common for people to travel across state lines to get this taken care of properly. At one point before Dr. Govekar agreed to do the laser operation I was prepared to fly from Indiana to California to do it.
 
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