My body felt as if it were splitting in two
Published on The Guardian ,
Lia Hattersley developed a disabling condition in pregnancy that confounded conventional treatment. Here, she reveals how she eventually found the help she needed.
This time last year I had no idea that pregnancy could leave a women disabled. I was 31, healthy, active and 22 weeks pregnant with my first baby, when I developed alarming pains in my pelvis which were sharpest around the pubic bone. Soon I could hardly turn over in bed, let alone walk, and I could hear my pelvic bones grinding. My body felt as if it were splitting in two.
I was ambulanced to Guys hospital in London where I was diagnosed with symphysis pubis dysfunction (SPD). The obstetricians explained that the pregnancy hormone relaxin was causing my pelvic ligaments to slacken so much that the front joint of the pelvic girdle – the symphysis pubis – was separating. They explained that this happens naturally in pregnancy but that in some women seems to loosen too much.
I had all the classic symptoms: difficulty walking, standing on one leg or parting my legs. They said that the condition would not harm the baby but would not clear up until delivery, still some 15 weeks away. I was given painkillers and saw an obstetric physiotherapist, who gave me crutches, a support belt and advice on keeping my knees together when moving. Later we even hired a wheelchair so that I could go out.
The care I received, as far as it went, was quite good. It was certainly sympathetic; some women’s doctors fail to take SPD symptoms seriously and do not refer them to physiotherapists, who can advise on how to avoid further damage to the pelvis during labour. But I did feel let down by conventional medicine because it spun me the line that SPD was untreatable. I was not warned that some women do not recover after the baby is born – I still had difficulty walking five months after delivery – and no one mentioned that some osteopaths and chiropractors can successfully treat SPD.
Alarmingly, it seems that the number of SPD cases is growing. Vanda Wellock, a midwife at St Mary’s hospital, Manchester, recently carried out a study suggesting one in 27 pregnant women suffer pelvic pain. She is now going to study how many of these suffer acute SPD and expects the numbers to be “quite high”.
Jane Newman, a women’s health physiotherapist at the John Radcliffe hospital, Oxford, agrees. “It’s terribly difficult to identify why,” she says. “Women are doing a lot of exercise and carrying on working later into pregnancy, which could be a factor. They are also sitting at PCs and driving a lot more.”
Newman accepts that NHS care has been too conservative, but says physiotherapists are changing their approach, particularly to postnatal care. She has started “stability classes” for SPD sufferers, which offer muscle-energy technique exercises, manipulation and posture correction. Although rare, these classes, she says, have helped to reduce the numbers of acute cases.
Due to their lack of knowledge, SPD presents doctors with a problem, says Malcolm Griffiths, obstetrician at Luton and Dunstable hospital: “It’s not well researched and not well understood by GPs, obstetricians or midwives generally.” He adds that SPD is unpredictable and that while some women only suffer SPD postnatally, most get better quickly, with some improvement within hours after delivery.
My own life was turned upside down by SPD because I could not look after myself. With my husband at work, my parents, who live five hours away, had to nurse me through pregnancy at their home. I had no salary and felt very isolated from normal life. I felt negative towards my body and aware of how strangers gawped at me, heavily pregnant and crammed into a wheelchair. I missed my husband terribly, yet when I did see him it hurt even to hug him.
A few weeks before I gave birth, my condition improved enough for me to cope in our by now specially adapted home. But after I had a normal vaginal delivery (some sufferers opt for a caesarean section), my SPD got worse.
For weeks my parents looked after me and my son. I felt I was depriving my husband of time with our baby and felt furious with my body for letting me down. Inwardly I was jealous of everyone who could pick up my son and comfort him when I could not.
As the months passed, my condition improved sporadically, but I kept having relapses. I could not return to work and had to give up my job. Through a local SPD support group I discovered that some women are left permanently disabled, while for others the condition can reoccur premenstrually, when they take the contraceptive pill or during later pregnancies.
Postnatally, I was transferred as an outpatient to the Royal London hospital. The physiotherapist suggested some exercises and I also tried pilates, but nothing helped. After five months, I was referred to the orthopaedics department to be considered for an operation to stabilise my pelvis by stapling it. The idea really frightened me, but I was right to be cautious. Rami Hussein, an orthopedic surgeon who has undertaken a study at St Thomas’s hospital, London, on the outcome of this surgery, describes it as “a last resort” and says that while some women improve, over all, the success rate is “certainly not very high”.
I wanted to avoid surgery at all costs, so I sought various alternatives. Through the support group I heard of Fiona Meek, who had had SPD in her first pregnancy and spent months in bed. When the symptoms returned with her second pregnancy at week 12, her obstetrician said: “Conventional medicine has nothing to offer you, try alternatives.” She started treatment with the classical osteopath Quentin Shaw, who amazingly got her walking immediately. “I know I would be in a wheelchair by now if it wasn’t for him,” says Meek, who is now six months pregnant and still active.
Her experience is not unique. Sarah Bevan suffered two years of postnatal SPD, before visiting a chiropractor who gradually got her back to “99% normal”, despite her having another baby.
Both women had to pay for treatment. While obstetrician Malcolm Griffiths agrees that manipulative therapies may relieve SPD, he says doctors cannot prescribe or fund them through the NHS and doubts whether all women would be helped.
Shaw, a senior lecturer at Surrey Institute of Osteopathic Medicine, does not accept this. He believes classical osteopathy, which addresses the balance of the body as a whole, can alleviate nearly any sufferer’s symptoms. He cites the example of Hazel Clarke, who had SPD for 23 years during which she visited many osteopaths who could not help, before Shaw successfully treated her over a two-year period. “SPD responds well to the correct treatment,” Shaw says. “Pregnant women suffer this when relaxin accentuates pre-existing pelvic and spinal misalignments, but these can be adjusted during or after pregnancy.”
Shaw’s record impressed me, so I booked an appointment. He was the first person who sounded as if he really understood what was causing my pain and was confident of helping me. After one treatment I was able to walk and my crutches became obsolete. I had some setbacks but five sessions later, while I cannot run yet, I am recovering fast. My whole life has opened up before me again. According to Shaw, the pelvic misalignments he found, which we traced to an injury I had sustained two years before while hauling a boat up a beach, could have been corrected during my pregnancy.
Many health professionals seem sceptical about my story. But as things stand, left in the hands of conventional medicine, other women will go through the same experience. For women with SPD the already strenuous job of being a mother is made impossible if they can not walk or pick up their child. Surely they have a right to any treatment that could offer the hope of a cure?