10 years and counting

larosin

New Member
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Sorry, this is not a celebration of not having pilonidal. Instead I have been suffering with it for 10 years. Y'all are the first the people that gave me and inkling of what I have when I was 18, but I was very uncertain at the time. And I'm going to explain the best that I can to see if anyone has a solution.

2011
I noticed pain on my tailbone one day, I assumed that I must have bruised it somehow running from my car back to my dorm since it was hailing and a potential tornado was coming. I thought that maybe my backpack that I didn't tighten up and that slammed against my tailbone did that job. So, that evening I remember touching my tailbone and feeling a very painful bump there. I started to do research and found you guys 10 years ago. I was keeping my mother in the loop and she told me that there's no way that I had pilonidal. Instead I went to my doc who told me to go to a quick emergency place and get tested. They took a test and gave me antibiotics. I went through my summer as normal.

The new semester started and the pain started again. I went to the doc once more, who then had me go to another doctor to get the bump incisioned and drained. This was the last time of the year.

2012
I ended up getting drained about two more times before the end of the spring semester. That summer I went to a doctor close to where my parents where and they took a sample and came back with the diagnoses: Pilonidal. They sat me up to meet with a colorectal surgeon in Plano, TX. I meet her and she sets me up with a date to get surgery done. Now, here's a kicker. I don't remember the name of the medication but I can describe it. It has pig intestines in it, it was helping people with the palm of their hands or the flat of their feet heal more quickly. This company must have assumed it could work with the butt, as well. And it did, I healed a little too quickly on this. After a couple of weeks I was taken off of this med to let my body take care of the rest, which it did. Kind of. For some reason this doc had the obsession that I was not keeping my head hair out of the wound area, even when I finally let my hair grow out so I could split my hair to go over my shoulders during a shower. She got pretty frustrated.

2013

I stop seeing her and I just move on with life.

2015

I go the MEPs so I can go to OTS (Officer Training School). I sort of passed except that they found a small open wound, they informed me if I go surgery to fix it I pass and can go into the military. I find a surgeon in my local area, he thinks it strange how my first surgery went but tells me that I will have surgery and it will be an open wound. I get surgery done in July. By September I have not healed. This confuses the doc and he sends me to wound care. I was asked if I had Crohns Disease and I give a very blank stare (no I do not). They look at the wound and tell me that they need time to think of what they need to do. After a very short time, a week I believe, I come back and they put me on a wound vac. By December I am healed.

2016

PSYCH! I open up again! Surgery #3 is the second week of January. I get sepsis a day afterwards, I heal up. By the middle of Feb, I healed up. I open up again. In March they use both a wound vac and I go to HBO. I heal up again. Cautious optimism everyone assumes I am healed. By the end of May and early June, I open up again. By this time the Wound care doctor believes it is time for me to go to to a medical school hospital. Insurance and said med schools don't believe so, I fight from the summer to winter to go see someone. Finally, I go to Scott and White in Austin. He states it looks fine, I think by this time the skin grew over the opening to make it look healed. He said that he couldn't do anything if it looks healed. I go home defeated.

2017

Just cruising along with wound care until... A new plastic surgeon comes to town. I get an appt with him. His plan is to do a skin graft. In June, he does a debridement about the size of his fist (nice to know right?), he got down to the bone and found it squishy (also nice to know), he files down the bone til it's firm part. Wound vac and about a month later, he does the skin graft. I stay in the hospital about a week and I go home on bed rest, no moving for about a month.

December I am told I am healed. December my wound breaks open.

2018

I lose insurance and I float through the void.

2019

I get married! I see the wound care team one more time before I move out of state. They say to go see Mayo. End of the year I do. I see one doc who specializes with colon and another who is plastics. I have my surgery date for March.

2020

I go get surgery and end up staying in Minnesota for a month. They do a cleft left. Home by April. By May they say I am good to do whatever. By June the wound breaks open. By November my husband and I are back in Texas.




Yesterday I saw the first plastic surgeon that did my skin graft, he believes if we did a debridement and then once I am healed start laser hair removal. The wound care doctor is kind of upset about that, he thinks that we should go with a muscle rotation. Wound care doc said to go get a second opinion or go back to Mayo.

I'm at a lost y'all. Everything has failed. Should I just live with this pain? If you have any questions please ask or if I need to explain in deeper detail please let me know.
 
Hey @larosin! I'm so sorry to hear about your pilonidal journey. I'd recommend checking out or contacting Dr. Immerman's office. He deals with some of the most complex pilonidal situations (he gets many patients from ALLL over who have had one failed surgery after another). Here is his webpage: Why Isn't My Wound Healing? - Evergreen Surgical Pilonidal Clinic. I had the cleft-lift procedure with him about 5 months ago, healed up super quickly, and am moving on from thinking/worrying about recurrent pilonidal disease. Just shoot his office an email - they can give you some advice on the best way to proceed based on the info you share with them and your current situation. Hang in there - you are not alone.
 
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