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Why I'm Getting Personal and Talking About My Chronic Tailbone Pain

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I’m about to get personal. Real personal. Believe me — it takes some bravery to talk about pelvic pain. But here I am, sitting, typing away, wondering when the day will come that my darn tailbone will stop hurting. It’s not something I love to talk about. Chronic pain is hard enough to talk about. Chronic pain near your lady parts feels straight taboo.

But maybe after reading this someone will feel less alone. Maybe someone will gather the courage to share their own story. Maybe they’ll give pelvic floor physical therapy a chance.

It has felt like a very long road for me, but I know others who have suffered for much longer without clear guidance or support.

We really need to try and change all that.

So let’s rewind to my junior year in college, where this unsavory story begins. At this point in my life unfortunately I was pretty familiar with pain and was having backaches and headaches regularly. I just had my fourth of four knee surgeries and long since given up a hard-earned spot on the varsity soccer team, an emotional heart-wreck and story for another time.

I was sitting with my parents at brunch — they were visiting from Massachusetts for the weekend. I remember the moment vividly when my mom asked me what was wrong. I gave her my best “nothing, I’m fine” response which she quickly ignored (as mothers do) and asked me again. I began to cry right there in the booth over my eggs and bacon.

I told them how my “tailbone” had been hurting for a few weeks and I didn’t know why. “Did you fall?” They asked. Fair question, but no I hadn’t fallen. No injury, no trauma, no answer to why this started. All I knew was it hurt like a mofo.

My parents and I decided that I should see a doctor about this — “thank goodness — yes — please get me some help,” I thought. I ended up seeing a spine specialist who immediately put me on a heavy duty pain med and injected my sacroiliac joint (not really near where it was hurting the worst).

Nothing helped.

I was taking pain meds around the clock basically in any form and to the maximum dose that I could “safely” take. I spent most of my time in the fetal position in my bed with a heating pad over my bum, studying and trying to keep up with my college courses. I look back at pictures from a friend’s birthday dinner around this time and think, man, was I really that bad at faking a smile? I remember other events that I straight up missed because I was too exhausted from trying not to cry all the time.

The pain worsened — it woke me up at least once a night. I limped to class and then shifted uncomfortably in my seat hoping and praying that at any minute class would be over so I could stand up and lessen the dagger-like pain in my tailbone. It went on like this for about three months.

Looking back it may as well have been years.

Things started to turn around after I went to my final follow-up with my knee surgeon in Boston. The amazing surgeon who had reduced my knee pain drastically (when others had told me “there’s nothing we can do”) was about to take the first step in giving me my life back.

He walked into the room and said hello. I was lying on my side on the exam table because it was more tolerable than sitting up. When I saw him I pushed my self painfully to sitting. He asked me if my knee was bothering me and I said, no, my knee was feeling fine. He pressed further, inquiring, why then was I moving like I had aged 80 years since he last saw me?

I told him about the pain I was having. Over the next couple months he ordered just about every diagnostic test you could think of. Every single test came back the same:

Negative — no answer to what was causing my pain.

My doctor reassured me that this was good news as the type of constant pain I described could be indicative of a tumor — OK, perspective — I guess a diagnosis of idiopathic coccydynia (tailbone pain without a known cause) was something I could live with (side note: coccyx is the fancy medical term for tailbone).

He helped me to get scheduled with their spine specialist who was the go-to-guy for difficult joint injections. He felt that if this other doctor could inject an anti-inflammatory agent directly where I was having pain, I would get some relief — hopefully.

This was another doctor who restored my faith in the medical world. When the time came for my first ultrasound guided injection in my tailbone, a massive blizzard hit Boston. My mom and I trudged through the snow in the empty streets of Boston to the clinic and luckily the doctor was kind enough to brave the storm with the help of his trusty Jeep.

To get the injection I had to lay face down with my bum exposed, cheeks taped to the exam table to allow visualization of my tailbone. By all accounts a pretty awkward situation, but at this point I was in far too much pain to care.

I remember vividly the moment the numbing agent was injected at the site of my pain in preparation for the cortisone — this was the first moment of relief in months. After one cortisone injection and a series of platelet rich plasma injections (Google it, it’s pretty dang cool) I was completely pain-free (at least in my tailbone) for about the next three years.

Unfortunately, the pain did not stay away. When it started creeping back in I felt discouraged (and honestly a little scared). While it is not nearly as severe as it was in college, it was becoming pretty constant especially when I would sit for long periods. At this point though I had gained an edge that I had not had back in those days. I was now finishing up my graduate studies to become a physical therapist (PT) and had the knowledge to allow me to identify tight muscles in my hips and other areas I needed to strengthen. This helped some, but the pain persisted.

We had touched on pelvic floor physical therapy in school but at that time I still didn’t quite make the connection as I thought my tailbone joint pain couldn’t possibly be connected to the muscles that help you hold your pee in. My last class in PT school was a spine course and I was hoping that maybe this course would help give me some insight into the nagging low back pain I also had been having since being catapulted into a goal post my junior year in high school.

While we certainly did not go over this technique in class, I did however learn that the coccyx could be manipulated if it is out of place through (gasp!) the rectum. I was a bit shocked, but also intrigued. Could this be the answer? Could there actually be a type of PT that could access the area that was hurting me?

I began to research more about “women’s health,” another label for PT’s who specialize in women’s health-related issues including but certainly not limited to pelvic pain. Soon after I started a job at a private practice physical therapy clinic and began collaborating with the incredible pelvic floor physical therapists who worked there.

I was shocked to realize that the majority of my pain was coming from a trigger point, a monstrous type of muscle spasm when active, that can cause the tissue to be hypersensitive to touch and causes radiating pain. I learned to appreciate that the pelvic floor is filled with muscles that can be undertrained, tight, or painful just like any other muscle in the body.

Through these treatments I’ve had a taste of the first signs of relief in a while. I have begun to feel as though I am starting to regain control over the muscles in my pelvic floor and am getting a better handle on this whole pain in the butt thing. It’s taken me over five years to inch back toward “relief.”

I know I would have gotten there sooner if I had realized my issue was related to pelvic floor dysfunction.

What does a pelvic floor physical therapist do?

Pelvic floor physical therapists treat a wide array of conditions including bladder and/or bowel incontinence, bladder urgency, painful intercourse, and just plain pelvic pain, to name just a few. The realization that my problem was a muscle spasm (in a particularly unfortunate location) was shocking but also truly eye opening and a huge relief! Having a therapist palpate and release this muscle was so reassuring that this is a problem that could actually be fixed instead of something that I had thought I would have to suffer through for the rest of my life.

My hope is that with ongoing education, awareness and a well-trained physical therapist, more women will be able to seek care when problems such as what I had develop. Pelvic pain is extremely common but many people don’t realize this because it isn’t something we are eager to talk about to our friends and family.

After reading this, if nothing else, know that you are not alone. Know that your pain is real. Most of all know that there are highly skilled, compassionate pelvic floor physical therapists that would be overjoyed to help you ease your pain and allow you to take your life back!

This story originally appeared on The Chronic Lifestyle.

Getty photo by Ralwel

Originally published: January 5, 2019
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