It seems like nothing has changed in 30 years. It was six months after I had my daughter before someone finally believed me that my back agony wasn’t just normal pregnancy aches and pains – by then I had 14 broken bones in my spine and social services had threatened to take my baby away because I couldn’t care for her.
It could have been much less devastating if I’d known about Pregnancy Associated Osteoporosis (PAO) earlier. Yet today, I still hear young mums saying the same sort of thing has happened to them.
Many of them drop their babies – I did that too – because the strain of picking them up caused an agonising spinal fracture. It literally broke their back.
Yet there are early signs to flag this condition, and now there are treatments that could prevent tragedies.
Pregnancy Associated Osteoporosis is rare, but it may be more common than it seems. My GP friend diagnosed seven women simply because they knew about PAO through my experience. Imagine if that was the case with even half of the GPs, midwives, gynaecologists and obstetricians in the country.
That’s why I’m determined to change the situation. I suffered 20 years of agony before a wonderful doctor fought to get me on a drug that has restored my bone density.
I can never get back the quality of life that I lost and the mental trauma I endured, but I can help to ensure that young women don’t have to go through the same.
There’s important new scientific research underway – if PAO is rare, research into it is even more scarce. The study needs more women to take part: women both with and without PAO, so I’m working to raise awareness for the research study as well as PAO itself.
I have been diagnosed with complex PTSD from my PAO experience and still have terrible flare-ups. I was 28, we’d moved from Cheshire to London with new jobs and a new home and we were really excited about having our baby.
Two weeks before the due date, I turned over in bed and felt horrific back pain.
My GP insisted it was just the baby’s head engaging, even though I was struggling to move at all.
I went into labour without even feeling contractions, because all my attention was given to that sickening back pain. During labour, I felt my back ‘go’. I know now that the feeling was a vertebra fracturing. It’s hard to describe. Some women feel it like a pop.
I was discharged after 24 hours even though couldn’t pick up my baby and was struggling to breastfeed. The physio said I’d pulled muscles. No one was interested when my husband Martin said I seemed shorter – we now know that this is a red flag, it means that the spine has collapsed.
You can be left with a permanently misshapen back, which will give you problems throughout your life.
The joy of our first child was overtaken with worry. We had no support network in London so family put their lives on hold and came south to look after us. I couldn’t even put my hands up to wash my face.
Eventually though, everyone had to go home, so I had to get on with it. None of the healthcare professionals believed me, they were treating it as a mental health issue. I tried to pick up my daughter Eirian from a cot and my back went again – there was such sudden, intense pain that I dropped her, luckily into the cot.
Social services threatened to take Eirian away because I couldn’t take care of her or myself, so we sold our car to pay for help and I was literally forced to go back to work despite the pain and high risk of more broken bones, so that we could pay someone who could pick up the baby. It was devastating.
Our GP friend said that if we weren’t being heard, we should change to a different surgery. The new one listened, and could see even from the way I was moving that it was physical. He did blood tests which were negative. Martin was a rugby player and said it was like I’d injured my back, so the GP sent me for X-ray.
As soon as they did the X-ray, they phoned my GP, who kept the surgery open so I could go straight there. He asked if I’d been in a car crash. He’d never seen anything like it, and Martin said, ‘That’s why she’s so much shorter!’ The doctor measured me and I’d lost 5in of height.
The GP referred me to an endocrinologist, I had a Dexa scan for bone density and was formally diagnosed with osteoporosis – I had the bone density of a 99-year-old.
I was passed around many specialists but bone treatments for osteoporosis are licensed for post-menopausal woman, not young women. They didn’t know the cause – and still don’t. They think it might be multi-causal, linked to hormones, genetics, the microbiome and bone density can be lost because of lactation.
They did try some drugs but they did nothing for me. I was left to see what would happen. Your bones are weak so there’s potential for fractures throughout your life. I broke my hip, and I spent a couple of years in a wheelchair. I don’t know how many broken bones I’ve had – they had to stop X-raying me because of the radiation risk.
I was coming up for 50, and was so weak that I was breaking ribs going over speed bumps in the car, and was terrified about how much worse this could get after menopause, when osteoporosis normally becomes a problem. For 20 years, my quality of life had been destroyed, and not just mine. It was terrible for my Martin and Eirian.
Loads of women with PAO suffer relationship break-ups not just with their partners but with friends and family or colleagues who just can’t understand how bad it is.
On the day that I was in such despair that I had logged on to the Swiss Dignitas website for euthanasia, a new specialist offered me a consultation at Addenbrooke’s Hospital in Cambridge.
A baby-faced doctor arrived. We were sceptical. He produced research papers, saying he’d found a drug called Teriparatide, and he’d fight with my health board to get exceptional funding for me to try it.
It turned my life around. Since I’ve seen him, I haven’t had a single fracture, and I have the bone density of a 62-year-old – which is my age now. It’s incredible.
After that, in my efforts to raise awareness of PAO, I met a physio who’d never heard of it, but worked with young women with eating disorders, who are also prone to osteoporosis. She gave me progressive, weight-bearing exercises which have helped me straighten up, so I’ve gained some height back, and I and am sure the exercises have helped build bone density as well as the drugs.
I’m still at high risk of fractures because I’ve had so many already, but it affects me in much less serious ways, like not being able to lift more than 10lb.
I really hope that if Eirian gets pregnant in the future, I’ll be able to lift and hold her baby. That would be so emotional for me.
There could be a genetic aspect to PAO so she had a Dexa scan in her 20s and it showed a loss of bone density, so she took up weight-bearing exercises and it’s reached normal levels.
Even so, she’s been told that she’d have to have an early Caesarean hospital birth, and all the professionals involved would be alerted to ensure the least possible strain on her skeleton. She would only be able to breastfeed for the first four days, for the colostrum, because for some women the fractures begin during lactation not childbirth.
Every woman should have the chance to benefit from these measures, and the drugs that are available now. One of the medicines even allows you the chance to have a second child. These drugs are hard to obtain because you need your doctor to apply for exceptional healthcare funding.
One of the big worries for mums who come to our support group is that they won’t bond with their babies because they cannot care for them and they’re so scared of dropping them. We connect them with someone as near to them as possible who’s been through it, because there are things you can do.
It helps to get your baby independent as young as possible. Low tables and chairs are helpful, and you can sit or lie on the floor with them.
The impact of PAO goes well beyond back pain. To deal with the hormonal aspect, I stayed on the contraceptive pill until I got breast cancer at 57. Now that I’ve been cancer-free for five years, I am stopping the hormone-based treatment Tamoxifen and there’s some debate about whether I should start HRT. It may be good for my bones but the risk of cancer needs to be weighed up.
What I say to all the new mum with PAO is: You will get better. It may be hard to believe, but the fractures will heal, you will do more with your babies, you will bond.
We need healthcare providers to become aware of PAO so that it can be recognised at an early stage, then women won’t have to fight to be believed, and they should get the support they need. It’s appalling that women today are still living with the threat of having their baby taken away.
The researchers and Karen are speaking about PAO at several autumn conferences for healthcare professionals. Including: