Karen

Pregnancy and childbirth

35 years ago in 1991, Karen was aged 28 and pregnant. She gave birth to a beautiful and healthy daughter Eirian and was eventually diagnosed with Pregnancy Associated Osteoporosis a few months after she was born. During the last few weeks of pregnancy, her complaints of sudden, severe back pain from just turning over in bed were dismissed by her GP and maternity care. They all insisted it was just the baby’s head engaging, even though Karen was struggling to move around and get into and out of bed and seating. She went into labour without feeling a single contraction, just horrific back pain and then felt her back give way during labour.

Karen was discharged from hospital after 24 hours, even though she could not pick her baby up and was struggling to breastfeed with her back pain. Midwives and different physiotherapists insisted she had just pulled muscles, but one physiotherapist provided ‘hands on’ treatment, when Karen felt her back “go” again. Her husband Martin said she suddenly seemed dramatically shorter but this was dismissed by many healthcare professionals, from midwives to GPs, with one telling him, "not to be silly."

Motherhood and looking after her baby

Karen & Martin’s joy and excitement of having their first baby was completely overridden with worry. Family put their lives on hold and travelled long distances to look after both Karen and the baby. Karen was living with ongoing pain and increasing stiffness and by now was really struggling to move around, kept getting stuck in bed and chairs, struggling to get out of them due to pain, and could not even put her hands up to wash her face.

Around this time, Karen tried to pick her baby up from the cot only to feel her back “go” again, suddenly experiencing extreme pain and dropping her baby. Karen collapsed on the floor. Her husband Martin pleaded with their GP to help her but he said, “All women get emotional after childbirth."

Investigation

Many healthcare professionals repeatedly insisted this was normal pregnancy pain. However, thankfully, a GP friend advised changing GP surgery. The new GP at long last listened and believed something was wrong. He started investigating possible causes, exploring the possibility Karen might have other conditions that can come to light in pregnancy, such as multiple sclerosis or rheumatoid arthritis.

Eventually, when all the tests came back negative, the GP agreed to Martin's request for an X-ray, as he was certain her back was injured. As soon as Karen was x-rayed, the hospital staff phoned, requesting she went straight to the GP, who was opening the surgery just to see her. On the journey there, Karen just kept saying to her husband, “I’m dying, aren’t I? The pain is that bad.”

Eventual diagnosis

Karen’s GP asked if she had ever had back pain previously or been in a car crash. They said they had never seen anything like her x-ray: it showed her back was broken in four places. Karen had felt her back “go” on four occasions, with worsening pain each time, but this had been dismissed each time by different healthcare professionals. Karen’s husband asked if this was why she seemed so much shorter and she was then measured for the first time and found to have lost three inches.

Karen and her husband Martin thought finding out what was wrong would solve their problems. The GP's referral to an endocrinologist eventually led, several months later, to a DEXA scan and a diagnosis of osteoporosis of pregnancy, as it was then called in the UK. Her DEXA score was severely osteoporotic at -4.52 and Karen was told, aged 29, that she had the bones of a 90+ year old. She was told not to lift or carry her baby to allow the fractures to heal and advised of the need to be careful to avoid further fractures.

The Health Visitor contacted social services on hearing of Karen’s diagnosis, who threatened to take baby Eirian into care if Karen and Martin could not cope looking after her. In response, they sold their car to pay for a live-in nanny for a few months. Karen then relied on high-dose painkillers to return to work full-time.

Karen found a new sense of resolve through work. It was largely a desk job and something she could do well, compared to struggling physically with home life. Karen was eventually awarded an MBE for "distinguished work services" and had a long and successful career in charity and research work, despite the challenges she experienced due to PAO.

Despite extensive testing, no secondary causes were found for osteoporosis in Karen's case. The only anomaly found was hormonal, in that Karen had low testosterone. But at the time, this was not felt to be significant. She was put on the contraceptive pill, with the medical recommendation to stay on this until menopause and then switch to HRT.

Medical care

Karen continued to fracture and saw many medical professionals over the next 20 years, undergoing further testing. She had always hoped to have a large family but was told that if she became pregnant again, she would have to have a termination because her bones were not strong enough to support another pregnancy. Many women with PAO today though, do go on to have successful further pregnancies, after bones improving, which in some cases involves medical treatment.

Karen was given bisphosphonate bone treatments and calcitonin, all that was available at that time, which did not improve her bone density or stop her fracturing. At least 24 were identified on X-ray (spine, ribs, hands, feet & hip) before imaging was stopped due to radiation overexposure concerns. She had 14 vertebral spinal fractures causing 5-inches in height loss. She fractured metatarsals and metacarpals. Each different fracture had different pain and different impacts.

Over this time, physiotherapists, occupational therapists and a very supportive GP were a huge help for Karen. Occupational therapists in particular, provided advice and useful equipment.

Approaching the menopause Karen underwent further treatment

Coming up to 51, the average age to go through the menopause in the UK when one in two women lose 20% of their bone density, Karen went through her darkest time. The prospect of losing further bone density filled her with despair. She was already living with chronic pain, was in constant fear of fracturing and was no longer able to work, so she decided to research assisted dying. But it was at this time, that her circumstances began to change.

A specialist offered her a consultation and fought to obtain new anabolic bone treatment for her, via exceptional UK healthcare funding. This was Teriparatide (Forsteo) treatment for two years, followed by Denusomab (Prolia) treatment for five years. Karen also then paid for Romosozumab (Evenity), which was not licensed at that time in England and only accessible privately.

Since starting anabolic treatment over twelve years ago, Karen has not had a single fracture and her DEXA score has improved from severe osteoporosis to a more normal DEXA score for her age. Even after the initial anabolic bone treatment, Karen stopped fracturing and was able to celebrate her 30th wedding anniversary, with a big party with family and friends.

Karen also met a physiotherapist over twelve years ago, who specialised in treating younger women with premenopausal osteoporosis. Her medical care improved Karen’s posture, strengthening her back muscles and helping her regain two inches in height, reducing her kyphosis and pain.

Further medical challenges before a significant improvement in quality of life

Karen was feeling more positive than she had done for years when she was diagnosed with both breast cancer and a grade 3 SAH brain haemorrhage on the same day, becoming critically ill in hospital intensive care. Having recovered from both after surgery and treatments, Karen was taken off the contraceptive pill and experienced a sudden, medically-induced menopause.

Karen is now eight years on from her initial breast cancer diagnosis, with no recurrence, despite a few “scares and investigations”. She is currently not on any bone medications but on HRT and Testosterone hormones, plus calcium and vitamin D supplements for her bones, post-menopause. She has had to access these privately while also being under the long-term care of PAO bone expert, rheumatologist Professor Richard Keen at the Royal National Orthopaedic Hospital (RNOH).

Despite Karen's cheery disposition and incredible drive and dynamism, everything she has experienced has taken a toll on her mental health.
She was diagnosed with mild cognitive impairment as a result of the brain haemorrhage, along with complex post-traumatic stress disorder.

The pandemic and moving from South London to Somerset to be near her daughter created a whole new set of medical challenges. But despite these, she is more committed than ever in improving the care women with PAO receive. Every time she hears yet another story of a new mum not being heard, investigated or able to access treatment despite having a diagnosis, fuels her desire to do more. She set up our new PAO UK charity becuase she doesn't want anyone else to experience what she has.

"It is truly heartbreaking this devastating type of osteoporosis is still so unknown some 70 years after it was first reported in The Lancet medical journal in 1955," she says.

The future

Despite everything she has been through, Karen insists that she would not be without her daughter Eirian and husband Martin (and now also her new son-in-law Matt) and their incredible support. It has kept her moving forward, trying to obtain answers and help for herself, other PAO Mothers and their families.

Karen hopes current initiatives and our push for change is successful. In the meantime, Karen has recently celebrated her 60th birthday, 40th Wedding Anniversary and a successful first year of PAO UK.