Old Bones, Young Heart

The next morning, my world came crashing down. "Something's really wrong," I sobbed to my Husband. I was in excruciating pain in my mid back, and the only thing I could link it to was the pressure I had felt laying on my back the previous day. The pain continued to build.

A couple of days later as I struggled to get up in the early hours of the night to breastfeed my son, I experienced excruciating back spasms. For hours I could do nothing but sit on the edge of the bed and writhe in pain: unable to even lie back against my soft pillows. The days that followed were a haze, clouded in pain and tears. How could this happen to me again?

Because this wasn't the first time I'd experienced debilitating back pain. Three months after the birth of my daughter over three years prior, I injured my lower back when lifting my daughter in her bouncer. I had setback after setback, and was ultimately unable to lift my tiny baby from her cot for months. Simple tasks like brushing my teeth over the sink put an awful strain on my body. My daughter was approaching two years old before a physiotherapist showed concern over my posture and suggested an MRI. I was diagnosed with Scheuermann's disease (a juvenile disease where the vertebrae have not developed properly and are formed in the shape of a wedge.) I was told to treat with ibuprofen and continue physio.

Fast forward more than three years and I once again find myself cradling my newborn in tears, barely able to walk with pain, unable to lift even a cup of tea to my mouth whilst standing. I punished myself with regret. Was this my fault? Could I have done something differently? How could this happen again? Only this time it felt different. Not just the pain, but my drive to find answers. I saw physiotherapists, osteopaths and Reiki healers, and also arranged for a private MRI.

The results left me stunned. I was told I'd suffered multiple fractures in my thoracic spine, and an urgent review was recommended, including a DEXA scan to measure bone density. My concern only grew when the disbelief was plain in the faces of medical professionals. How could a young woman experience fractures, which at this age would only typically be associated with a serious car accident?

My attempts at seeking support through the NHS were unfortunately disappointing and frustrating. I was refused a direct referral for a DEXA because I am under 50, and would be faced with long wait times to see a specialist for diagnosis. Fortunately, I was able to once again utilise private health care, and had a DEXA scan performed in late October. The results were like a blow to the chest.

The scan confirmed I had severe osteoporosis with a high fracture risk, but the surprises didn't end there. By November, I sought advice from a spinal surgeon who reviewed both my old and current MRI results. The surgeon confirmed I had been misdiagnosed with Scheuermann's disease, and the old MRI in fact showed “healed” fractures in my lumbar spine. This realisation made the entire chaotic puzzle finally fall into place. I had unknowingly gone into a second pregnancy with osteoporosis, and suffered the consequences.

Fast forward another year: It's summer once again, my daughter is 4 and my son is 1, and I'm finally starting treatment within the NHS for osteoporosis, having been diagnosed with a rare form of pregnancy associated osteoporosis (PAO). PAO is a rare condition that most medical professionals either haven't heard of, or are completely unaware of the warning signs.

Despite my difficult journey, and my daily struggles with the pain associated with changes to my body, I consider myself one of the lucky ones.

Although rare, PAO is still thought to affect 1 in 100,000 women, a number far higher than originally estimated due to the number of women likely going undiagnosed. Of these women, many suffer fractures so severe they are confined to wheelchairs and require around the clock care to help raise their babies, and tackle the long road of physical and emotional recovery.

As for my own recovery, it's a long road ahead but I am hopeful when the next Summer comes around, I'll have found myself once again.