My Pain in the Butt

My Pain in the Butt

20 years ago, I developed “piriformis syndrome“, which results in an intense pain right in the middle of just one buttock. I assumed it was from referred back pain which I’d already been struggling with, but managing, for over 10 years.

One night, I had slept on my side on a hard surface and a lot of my weight had pressed against my right buttock. I didn’t notice anything the next day until we went on one of our usual long hilly mountain bike rides. Halfway through (when we were farthest from the car, of course), terrible pain developed in my right buttock and my right leg strength started fading.  

We were a few miles downhill on trails so there was no way for my hubby to ride ahead and get the car. I couldn’t figure out what was going on with my leg power, but I could feel the pressure on the bottom of my right foot on the pedal wasn’t nearly as much as on the left. My brain was ordering the leg to push, but it wasn’t working well enough to pedal up the steeper parts.

Plus, the pain in my right buttock was intensifying. I had to walk and push the bike up many climbs, which involves a twisting force and is hell on my lower back. Then I’d mount up and ride a while before losing power (and gaining pain) on the next uphill portion. I was so frustrated and hurting and still miles from the car. What a torturous trek it was – I was just happy to make it before dark.

I went to see a chiropractor, but after a few failed adjustments, he suggested I see a neurologist. Even after an MRI, the neurologist couldn’t pinpoint where the pain and weakness were coming from, and after several physical therapy sessions, the pain was only getting worse.

Next, we tried more invasive diagnostics and treatment. I tried epidural injections but they made no difference. Then a diagnostic nerve block was tried to determine which nerve was involved. That left my right leg completely paralyzed for 11 hours, far longer than had been expected, but as sensation came back, all the pain returned as well.

The key to my diagnosis was an extremely unpleasant and suddenly excruciatingly painful internal probing. A finger goes in and up to press against the inner hip area from the inside, which ignited a flash of pain so severe that my leg gave out and I almost fell even while leaning on the exam table.

Eventually, I became desperate enough to try surgery to release the nerve from where it was being squeezed by cutting piriformis muscle. I had researched it (as well as I could back in 1995) and I knew there were two other external rotator muscles in the hip, so I judged it a worthwhile risk to get rid of the increasing pain and, what scared me more, the loss of strength in that leg.

The surgery revealed that I’m one of the 17% of people who’s sciatic nerve grows through the piriformis muscle instead of around it, so that makes me unusually susceptible to this pain.

Right after surgery, I was delighted to find that my right leg was “back online”.  But months after surgery, the pain was still there and then the left side started hurting. Since the surgery hadn’t helped my pain much and the left leg wasn’t weakening, I decided against having the surgery on the other side.

These days I have a lot of hip/buttock pain (in tears from it this morning), but no weakness. The surgery did relieve a certain aspect of the right-side pain, but what remains is just like the pain on the left side.

With equal, but alternating, pain in both hips/buttocks/legs I’m now almost sure it’s coming from my unstable SI joint as it shifts so easily from side to side.

A few years ago (about 15 years after my surgery), I had been feeling increasing pain from my right piriformis again, but when I saw an orthopedist, he said they no longer considered “piriformis syndrome” a valid diagnosis. What? He said that “they” had found that pain in the piriformis usually originates and radiates into the buttock from the low back and/or sacrum.

In my case, with the sciatic nerve entangled in the muscle, I think “piriformis syndrome” was a perfectly valid diagnosis. Most people don’t have that added problem so it might be true that their pain is coming from somewhere else, but in my case, I believe it was truly a “pain in the butt”.

Unfortunately, there’s no way to ascertain whether the sciatic nerve is growing through or around the muscle until they go inside and look. It’s a nasty surgery because they have to make a 6″ incision and cut through the gluteus muscle to get to it.

But 20 years ago, I was able to bounce back quickly. I spent about 3 days on the couch before starting to walk, and 8 days later I was on the bike again (slowly and on level ground only). A month later I was completely back to (my) normal: strong but in constant pain, whether I was bicycling or not.

This episode is what started me on opioid therapy. Since we couldn’t rid me of my pain, my neurologist prescribed me opioid pain medication so that I could remain active and employed (sitting is very painful with piriformis syndrome).

At that time, my doctor and I both assumed I would be taking the opioids only until we found the cause of my pain and fixed it. The pain relief allowed me to continue pursuing a “cure”, as I described in My Journey Through Non-Opioid Pain Treatments.

My decades-long search finally ended when I was diagnosed with Ehlers-Danlos Syndrome in 2012. The joint instability that’s a hallmark of this genetic condition is what had been and will be causing me increasing pain all my life.

Here is more information about piriformis syndrome from Wikipedia:

Piriformis syndrome is a neuromuscular disorder that occurs when the sciatic nerve is compressed or otherwise irritated by the piriformis muscle causing pain, tingling and numbness in the buttocks and along the path of the sciatic nerve descending the lower thigh and into the leg

The syndrome may be due to anatomical variations in the muscle-nerve relationship, or from overuse or strain.

When the piriformis muscle shortens or spasms due to trauma or overuse, it can compress or strangle the sciatic nerve beneath the muscle.

Generally, conditions of this type are referred to as nerve entrapment or as entrapment neuropathies; the particular condition known as piriformis syndrome refers to sciatica symptoms not originating from spinal roots and/or spinal disc compression, but involving the overlying piriformis muscle

Runners, bicyclists and other athletes engaging in forward-moving activities are particularly susceptible to developing piriformis syndrome if they do not engage in lateral stretching and strengthening exercises.

When not balanced by lateral movement of the legs, repeated forward movements can lead to disproportionately weak hip abductors and tight adductors.[12] Thus, disproportionately weak hip abductors/gluteus medius muscles, combined with very tight adductor muscles, can cause the piriformis muscle to shorten and severely contract

Since the sciatic nerve is so close to the piriformis it is acknowledged that the muscle plays a role in irritating the nerve. The sciatic nerve originates from the L4- S2 nerve roots and goes to the front of the sacrum, passing under the piriformis muscle.

Different anatomical variations of the sciatic nerve have an effect on piriformis syndrome. The peroneal and tibial are the two divisions of the sciatic nerve. These two divisions are commonly bound together, but in certain cases they are split when they pass through the piriformis muscle, which can have different effects on the piriformis syndrome.

 

5 thoughts on “My Pain in the Butt

  1. painkills2

    It feels like someone kicked me in the left cheek. Ice and heat aren’t helping, so I guess I need to find some different stretches. And I guess I’m lucky that I’ve got a lot of padding back there — must be harder for those with bony butts. :)

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  2. BirdLoverInMichigan

    Now I know your backstory.

    So that’s what led you to opioids, and ultimately, your EDS diagnosis. I’m sorry you’re in such unrelenting pain. But doesn’t it add insult to injury to learn your nerve is growing through that muscle? And then the doctor claiming piriformis syndrome isn’t the issue, that’s really over the top.

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    1. Zyp Czyk Post author

      I appreciate you verifying that it wasn’t a great reply :-)

      Later, I could see he was just a young, interpersonally dumb, guy who tossed out a couple of sentences summing up things he’s heard without thinking how it would sound to me. I wish I could have explained myself to him so he could learn – otherwise, how can we expect them to learn?

      Nowadays, patient satisfaction surveys are almost pushed on us, and that would be the place to give feedback.

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  3. Pingback: Treatment for Buttock Pain/Piriformis Syndrome | EDS and Chronic Pain News & Info

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