Pregnancy Associated Osteoporosis: I have 72-year-old bones

“After a few more fruitless visits to the GP, I used my work health insurance to insist on a scan of my back. The results showed I had a fractured spine.”

It was the middle of a Sunday night in Kingston Hospital postnatal ward, where curtains divided each set of parents with their newborns. The silence was intermittently disturbed by babies crying. I was fast asleep and remember hearing the midwife call bell in my dream. It sounded like the emergency siren in a sci-fi film when the spaceship has to be abandoned.

In the dream, I woke up and saw Maeve sleeping in her cot at the end of the bed and my partner Alex asleep in the chair beside me. I then came to and saw them both. I had an overwhelming feeling that we were never going to be allowed to leave the hospital and be a family. 

Pins and needles were moving up through my chest, I had a dry mouth and felt short of breath. I tried to open a window but none would unlock. Alex woke up and I called for the midwife. I was rambling on at great speed that we would never get to go home.  After a few minutes, she took me through the maze of the long window-less corridors of the postnatal unit and down in the lift to get some fresh air.

“Had panic attack on postnatal ward” is now on my medical record and listed in GP referral letters as key information. I’m ashamed about this though I know I shouldn’t be.

I’d been in hospital almost a week, having been induced on Tuesday morning because Maeve was well past her due date. Like many new mothers, I was also experiencing intense hormonal changes following Maeve being born three days before and was likely having withdrawal symptoms after being taken off morphine.

During the birth, I developed a fever which meant the doctors had to intervene, and subsequently lost 1.3 litres of blood – three times the normal amount when having an episiotomy (a cut to make space for the baby to be born). On the Friday morning when I was transferred from the recovery unit to the postnatal ward, I was told a doctor would come and talk to me that day. No doctor ever came.

Once in the postnatal ward, I realised I couldn’t sit up and hold Maeve due to a sharp pain in my coccyx and a deep ache in the bra-strap area of my spine. I also had pain in my left hand and foot. Alex would pass Maeve to me so I could try and breastfeed lying down but it was difficult to do this often enough. I was worried she was hungry and that we were missing out on important bonding time. 

I remember feeling embarrassed when I heard someone complaining about the state of the ward toilet. I’d dripped blood all over the floor but it was excruciating when I tried to bend down to clean it up. When I eventually did speak to a doctor on the Sunday evening about the debilitating pain I was experiencing and the need for it to be further investigated, I was told emphatically: “We don’t do postpartum scans.”

We were discharged at 5pm the next day. I breathed a sigh of relief. That week in hospital had felt like an age. Alex said later that it took about another week until I seemed myself again. Due to the discomfort I was in, I still wasn’t able to breastfeed Maeve without both sitting on, and being propped up by, cushions. 

I visited the GP. He referred me to the physio who thought I seemed okay. However, the pain worsened over the following months and spread to my rib cage after slipping in the shower (although the acute coccyx pain did improve). I became gaunt, lacked energy, and rarely got out of the house. Lifting an increasingly heavy Maeve became a daily challenge.

After a few more fruitless visits to the GP, I used my work health insurance to insist on a scan of my back. The results showed I had a fractured spine. It sounds odd but I was almost relieved to hear that. After not being listened to on so many occasions, it validated the pain, energy, and mental health challenges I’d experienced since having Maeve, as well as the lack of dignity I’d felt in the hospital after being rushed into the postnatal ward from the recovery unit before I was ready.

It’s unusual for someone in their mid-thirties to fracture their spine, so I was sent for a bone density scan. It showed that parts of my spine could have belonged to a 72-year-old – someone almost twice my age. The weakest part having something called a T-score of -3.4, whereas a normal score is zero. The T-score compares someone’s bone density with a healthy 30-year-old of the same sex and is used to help diagnose low bone mass (or osteopenia), and osteoporosis.

I swiftly researched the possible causes and weaned Maeve off breastfeeding at 7.5 months old to prevent weakening my bones even further.  In July 2022 – eight months after giving birth at age 36 – I was officially diagnosed with Pregnancy Associated Osteoporosis (PAO). All my bloods were normal and I had no other obvious causes of osteoporosis, having always generally been fit and healthy. 

The Royal Osteoporosis Society (ROS) is concerned that women with PAO are failing to receive the help they need. It’s a rare condition where bones, usually in the spine or hip, break easily around the time a woman gives birth. It can cause severe disability, pain and height loss. It is not known what causes it. 

Thanks to funding from the ROS, the University of Edinburgh is undertaking the first UK research in 30 years to find out more about the causes of PAO and its treatment.

Now I lift low-impact weights, take supplements and give myself a daily injection of teriparatide, similar to the parathyroid hormone, to help stimulate the rebuilding of my bones. Unfortunately, the NHS can’t prescribe the injection because it is only approved for use in postmenopausal women.

NHS England have recently extended the routine commissioning of Teriparatide to include men, as it found that their exclusion by NICE was “a manifest example of discrimination based on gender”. It could also be argued that pre-menopausal women’s exclusion is discrimination based on age, which like gender is a protected characteristic.

In the meantime, I have to spend £272 for it every month plus I must pay to see a private consultant for the prescription. I am due another scan shortly to find out if my bones have improved at all. I hope they have because I can only take the injection for a maximum of two years because it carries a small cancer risk.

The last couple of years have made me appreciate the fact that pregnancy, birth and breastfeeding can cause significant trauma. I am grateful for the NHS and medical advances but angry that I had to push so hard to get diagnosed. Many midwives and doctors seemed unwilling to listen and further investigate. With the Care Quality Commission reporting a notable decline in maternity services in October 2023, I’m not optimistic that this situation will improve.

I can only hope that other mothers get the attention they need once their babies are born. In my experience, it felt like a culture of disregard, with the focus being on the baby, which of course it should be, but not to the detriment of the mother.

A March 2023 Healthwatch report found that postnatal care failings can cause mothers to distrust the healthcare system, leading to the worsening of their mental health conditions. Things have to improve.

If you have been diagnosed with PAO, join the PAO UK and PAO international peer-support and advocacy networks.