Katy’s story
Everyone Told Me It Was Just Pregnancy Back Pain
A Birth Trauma and Pregnancy-Associated Osteoporosis Case Study
In the final weeks of my second pregnancy, I began experiencing severe back pain.
What started as difficulty standing up from a chair quickly became something much more serious. At 36 weeks pregnant, I was struggling to walk, unable to get out of bed without assistance, and needing mobility aids throughout my home. My back repeatedly gave way, causing me to collapse and scream in agony. The pain was like being electrocuted and having a knife driven into my spine. Eventually, I became so immobile that I was using a urine bottle in bed because I could no longer get to the toilet without severe pain and collapsing.
"There Are No Red Flags"
As my pain escalated, I sought help multiple times from various health professionals.
I was referred to the maternity unit and the doctor was unable to properly assess my back because the pain and muscle spasms were so severe that I could not tolerate being touched. Despite this, I was told there were no "red flag" symptoms because I did not meet the criteria for suspected cauda equina syndrome. I was told that a “mothers’ pain was not their remit”.
I repeatedly asked whether my planned caesarean section could be brought forward because I was struggling to function. I was told it was unlikely to happen because my situation was "not an emergency". On another occasion, after calling NHS 111 again because the pain had become overwhelming, an ambulance was dispatched. Paramedics contacted the maternity team for advice but were reportedly told again that my pain was not within maternity's remit and was not an indication for emergency delivery. I was left feeling trapped without any care, while my condition continued to worsen.
When Severe Pain Is Dismissed
One of the most distressing aspects of this experience was not only the pain itself, but the feeling that nobody was truly listening. At various points throughout my prenatal and postnatal care, my symptoms were questioned, minimised or attributed to anxiety. The focus remained on whether I met a narrow set of neurological "red flag" criteria, rather than on the reality that I was a heavily pregnant woman who could barely walk, was repeatedly collapsing, could not tolerate physical examination, and was living with extreme pain. There was no attempt to investigate the cause of pain or bring my caesarean section forward to help relieve the pain.
By the time I arrived for my planned caesarean section at nearly 40 weeks pregnant, I was unable to sit for discussions, required assistance getting dressed and undressed, and was relying on my own walking frame.
The Moment Someone Finally Believed Me
Everything changed during my caesarean section. While administering my spinal anaesthetic, one anaesthetist witnessed my extreme pain response and recognised that what I was experiencing was not typical pregnancy-related back pain.
For the first time, someone questioned whether there might be an underlying medical cause. She requested urgent imaging and further investigation.
After further battles convincing different members of staff an MRI needed to be done and comments like “causing panic over nothing”, the scan revealed the reason for months of worsening pain. I had compression fractures in four vertebrae in my spine.
Further investigations revealed severely reduced bone density, with a DEXA scan showing a T-score of -4.2, the same as an 80 year old.
I was diagnosed with Pregnancy and Lactation Associated Osteoporosis (PLO), a rare condition that can cause bones to become fragile during late pregnancy or after birth, leading to spontaneous fractures, most commonly in the spine.What had repeatedly been dismissed as pregnancy back pain was, in reality, a serious disease and a spine that had fractured in multiple places.
Living With the Consequences
The diagnosis explained the pain, but it could not undo the damage. The new, squashed, wedge shaped vertebrae would be with me now for life and may affect my health for years to come.
Instead of enjoying the early weeks with my newborn baby, I was learning how to live with multiple spinal fractures. I could not safely lift or carry my baby. I could not care for my children independently. My husband had to take time away from work to support our family and we had to rely on relatives to provide round the clock care for me and the baby.
We incurred substantial additional costs for equipment, rehabilitation and care. I required counselling and EMDR therapy for birth trauma, after dealing with flashbacks, night terrors and panic attacks.
Perhaps most heartbreaking of all was the impact on my children. My toddler witnessed repeated episodes where I collapsed or screamed in pain. He could not understand why I could no longer carry him, play with him, or comfort him as I once had. Even now, he asks if I am going back to hospital and tries to "fix" my back with a kiss.
Raising Awareness of Pregnancy-Associated Osteoporosis
Pregnancy and Lactation Associated Osteoporosis is considered rare and awareness remains extremely low among both the public and healthcare professionals. Many women experience back pain during pregnancy. However, severe, escalating pain accompanied by loss of mobility, inability to function, repeated falls, inability to tolerate examination, or rapidly worsening symptoms should not automatically be dismissed as a normal part of pregnancy.
While not every pregnant woman with severe back pain will have osteoporosis or fractures, serious causes need to be considered and investigated appropriately.
Earlier recognition of Pregnancy and Lactation Associated Osteoporosis may help prevent further fractures, reduce suffering, and allow women to access specialist treatment sooner.
Why This Story Matters
This story is not only about a rare diagnosis. It is about what can happen when severe pain is repeatedly minimised, when functional decline is overlooked, and when women feel they must keep proving that something is wrong.
Listening to women, investigating symptoms appropriately, and recognising that severe pain is not always "just pregnancy" are essential steps in improving maternity safety and preventing avoidable trauma.
For women experiencing severe back pain during pregnancy or after birth, trust your instincts. If something feels wrong, keep asking questions and seek further medical review.
