If you have spent much time in an IC support group or forum, you’ve undoubtedly seen some patients share that they have a curve in their spine, known as scoliosis. It’s been a point of discussion here at the IC Network for the past 25 years. We now understand just how and why scoliosis could play a role in our bladder and pelvic pain symptoms.
What is scoliosis?
Scoliosis is defined as a curve in the spine which measures ten degrees or more. More than 80% of cases, myself included have idiopathic scoliosis with no known cause. Congenital scoliosis develops in babies back before birth, usually the result of vertebrae not developing completely or correctly. Neuromuscular scoliosis occurs when muscles are unable to support the spine correctly causing the back to curve, often the result of cerebral palsy, spina bifida or a spinal cord injury. Degenerative scoliosis can occur as we age as the disks and joints of the spine wear with age.
Scoliosis can be mild, moderate or severe with two types of curves. For some, it’s gentle arc to the left or the right, known as a “c” curve. For others, the spine can bend first one direction and then the other, resulting in an “s” curve. It’s not just a lateral bending of the vertebrae, there can be some rotation too.
Patients can also have:
- One hip or shoulder higher than the other
- Uneven shoulder blades
- A “rib hump” as if one side is sticking out more than the other
- One arm hanging longer than the other
- Uneven legs
- Difficulty breathing (severe cases)
Which muscles are affected?
Scoliosis causes imbalance between the left and right sides of our spine, at the neck, back and within the pelvis. Muscles on the inside of a curve are often shorter and weaker than the muscles on the outside of the curve, which are lengthened and working harder to hold the spine in place. Some patients walk unevenly, resulting in a limp and leg pain.
Scoliosis can also have a profound effect on the pelvic floor muscles, including the hip flexors, quadratus lumborum, piriformis, and levator ani. The greater the curve of the spine, the more the pelvic girdle is effected as muscles, tendons and ligaments are twisted and strained. The SI joints and the hips can be affected as well.
Severe scoliosis can also compress or damage nerves, including the group of nerves which support the bladder, known as cauda equina. When compressed, patients can suffer from neurogenic bladder symptoms, including spontaneous incontinence, difficulty emptying the bladder, sudden urgency and more.
Treatments
Mild scoliosis may not need treatment though it should be monitored over time to see if it is changing. Physical therapists will focus on restoring good posture, the keystone to spinal and musculoskeletal health. A brace may be recommended to help the spine straighten during growth periods.
Two different types of surgery can be done, a spinal fusion to lock the bones in place or a spine/rib growing operation which can be adapted as the spine continues to grow. There are many risks versus benefits that must be carefully considered before surgery. When my parents heard the substantial risk of paralysis with spinal fusion surgery, they said “no.”
How is scoliosis pelvic pain treated?
Scoliosis adds complexity to pelvic floor rehabilitation because bony structures are placing persistent stress and tension on various pelvic floor muscles. Scoliosis patients must always be attentive to back health and core strength as well as our pelvic floor health. We must have a two pronged approach, (1) working to strengthen our back and posture, perhaps with a physiatrist and (2) working to maintain good pelvic floor health and tone, ideally with a pelvic floor physical therapist.
My approach
I developed scoliosis in 7th grade, the same year that I first experienced urinary frequency and urgency. (I had also broken my tailbone that year.) I had successfully passed the scoliosis screening at my school just months earlier yet, during a growth spurt, an S curve suddenly developed. I can still remember how painful it was to lay down at bedtime, as if my spine had to settle into place.
My parents first stop was to a local orthopedic surgeon, whose only recommendation was to have me lay down frequently, all day in fact. Physical therapy was somewhat helpful, encouraging me to move and strengthen my body. I can still do, at the age of 64, the exercises I learned at 14.
I followed my own path. When I was told to lie down, I stubbornly stood up. When I was told to rest, I forced myself to walk up and down my street. I knew implicitly that the more active I was, the better I felt. I even began playing tennis as a two-handed player with the goal of trying to straighten my back which, happily, led to a very successful tennis career. And with that improvement in my fitness and muscle strength, the curve reduced substantially, the pain improved and surgery was no longer considered.
I learned that excess weight made my back hurt more. I have worked very hard to keep my weight down though this was certainly been a challenge during COVID.
The single best exercise I found for my back was swimming, especially the backstroke. It lengthened and strengthened those muscles and felt wonderful. I now focus on stretches for my back. Sometimes I “pretend swim” on my living room floor, moving my arms like the backstroke to achieve that same wonderful stretch and it works really well. I walk several times a week. I try not to sit at the computer for long periods of time without getting up and walking around. I also try not to sit on one ankle or with my legs crossed, which also creates imbalance and stress in the legs and pelvis.
Inevitably though we can’t do this alone at home without some professional guidance. It’s important to work with physical therapists and/or physiatrists who can study our body mechanics and help us to improve the strength and balance in our entire body, including our spine and our pelvis. You can find a list of physical therapists trained in pelvic floor work at PELVICREHAB.COM
I would love to hear from other IC patients who have scoliosis. How has it affected you? Do you believe that it plays a role in your pelvic pain? What tips or success stories can you offer for other patients who are struggling? Please email me at: icnetwork@mac.com
Learn more about scoliosis at the National Scoliosis Foundation
