10.3 C
Tuesday, September 27, 2022

‘You feel so sexless and dirty’: the women living with incontinence after childbirth | Health

Commuters to London’s Liverpool Street were treated to a taboo-busting billboard last week, featuring a mother of two weightlifting, while leaking actual liquid. The ad is part of the “leaks happen” campaign, from the women’s health brand Elvie, aiming to raise awareness of a common, but largely obscured, problem – postpartum incontinence.

Claire Hackett, the Alliance party rep for Mid Ulster in Northern Ireland, can testify first-hand how women are suffering in silence, and says that openness is exactly what’s needed. When she returned to work 10 months after the birth of her third child, the impact of injuries following all three births continued to complicate her life. “I can remember the sweat and the fear of ‘Oh my God, what might happen if I don’t get to the toilet’. It’s things like this that you don’t really want to talk to people about.”

Hackett’s difficulties started about 10 years ago, after having her first child, which left her with a third-degree tear – meaning the rupture went as far as the muscle that controls the anus. After surgery, Hackett was handed a leaflet for pelvic floor exercises. Eight months later, she still hadn’t healed, and was experiencing stinging while urinating as well as bladder control problems.

Claire Hackett, the Alliance party rep for Mid Ulster.
Claire Hackett, the Alliance party rep for Mid Ulster. Photograph: Courtesy of Claire Hackett

“My husband and I hadn’t had sex at that point because I was still so scared of what was going on with my pelvic region,” she says. She was referred to a “back class”, where women got together and did a circuit of back exercises, which helped strengthen her core, but achieved little else.

Many women, says Hackett, are too afraid, ashamed or embarrassed to draw attention to their pelvic problems after childbirth. Added to this is the coy acceptance of the problem, “like in Tena ads for your little ‘oops’ moments. Like this is just what happens to women,” she says. “Yes, it’s common to experience incontinence. But it’s not normal: there are things that can be done.”

Myra Robson, a clinical lead physiotherapist and co-founder of the pelvic health campaign group Pelvicroar, says part of the problem is that women aren’t adequately prepared for birth trauma. “There’s still a much greater emphasis on this lovely romantic version of childbirth. People aren’t prepared for the fact that there can be a problem when you’re trying to get a whole human being out of this relatively small space,” she says. “I think we’re very unrealistic about that. We need to empower women to vocalise when they’re having problems and do something about it.”

It’s certainly not a niche concern: as many as one in three women experience urinary incontinence in the three months after childbirth, according to the National Childbirth Trust (NCT). And it can also develop in the years that follow. According to Julie Cornish, colorectal consultant at the Cardiff and Vale University Health Board and vice-president of the MASIC Foundation – a charity that supports women who have been severely injured during childbirth research shows that one in five women develop problems controlling their bowels in the first five years after giving birth vaginally.

Being pregnant and giving birth can also weaken the pelvic floor – the supportive hammock made of muscles and tissues that keeps the pelvic organs (the uterus, bladder and bowel) in place. When the pelvic floor is overstretched – if the baby is large, during an assisted birth (using forceps, for example) or if labour is prolonged – one or more of these organs can descend (prolapse) into the vagina. One writer described the experience as a feeling of constantly sitting on an egg.

But women are not necessarily warned of these risks, says Ranee Thakar, vice-president of the Royal College of Obstetricians and Gynaecologists. “Mothers tell me – when I see them – that nobody ever told them that these [pelvic floor disorders] could happen.”

After childbirth there is a lot of focus on the baby – and rightly so, says Thakar. “But we also need to think about the mother, especially given pelvic problems are not always readily apparent after delivery.” Undetected or mild birth trauma can escalate into more serious conditions as women age, she adds.

Postnatal care has long been patchy – even before the pandemic – partly due to a lack of education among healthcare professionals as well as the embarrassment and stigma that impedes mothers from reporting their issues in the first place. Covid simply exacerbated these underlying fissures, says Cornish: “We are facing a massive uphill battle, because cancer cases are going to be taking priority and so pelvic floor problems get pushed to the back of the queue again.”

For the most part, pregnant women are offered some education by the NHS about what to expect all the way through to delivery, but these classes are not uniform across the country. After birth, women are typically given a leaflet with instructions for exercises they can do to get their pelvic floor muscles back into shape (although pinpointing those muscles can be tricky). Meanwhile, postnatal care is largely the responsibility of community midwives. Around the six- to eight-week mark, a postnatal check on mother and baby is conducted by GPs.

Elvie’s Leaks happen billboard.
Elvie’s ‘Leaks happen’ billboard. Photograph: David Parry/PA

If a serious injury emerges, mothers are typically referred to secondary care. Twenty years ago, there were three or four clinics focused on pelvic floor problems across the UK, but while there are many more now, says Thakar, “they’re not there everywhere”. Waiting lists are long and increasing staff shortages haven’t helped. “In terms of a full pelvic floor assessment,” says Robson, “it’s usually the physiotherapists that do it, and there’s just simply not enough of us to go around.”

Christine Sweet, who lives in Greater Manchester, gave birth for the first time in June 2021. Her delivery involved an episiotomy (an incision between the vaginal opening and the anus to make more space for the baby), as well as forceps, both well-known risk factors for future pelvic complications. She was discharged from hospital about 24 hours after giving birth and put in the care of a community midwifery team. A few days later, her episiotomy stitches came apart.

In pain, Sweet went to her GP, who diagnosed her with an infection, suggesting it was acquired in hospital. The doctor was “horrified at the sight of the wound and didn’t know what to do. She rang gynaecology at the hospital, and they said that until the infection had been cleared, they weren’t prepared to see me.”

Sweet says that having an open wound that wasn’t healing was more painful than the labour. “Nobody seemed to know what to do with it, or what should be done to keep the wound clean and who was meant to be reviewing it.”

Eventually, after four courses of antibiotics, the infection cleared, but Sweet was told her problem did not satisfy the criteria for urgent referral to gynaecology. The waiting list for a standard appointment was hovering between six months and a year. Twelve weeks after the birth of her son, she managed to find some childcare, and went to A&E. After hours of waiting, it was determined her wound needed to be cauterised – a process in which electricity or chemicals are used to burn tissue in order to close a wound. It was done there and then, and healed soon after, but that wasn’t end of her problems. Finally, more than three months after giving birth, she had a full internal examination with a pelvic health physio team, where it was confirmed that she had developed a prolapse.

“It seems that if you have a baby, you should expect to be in pain,” said Sweet. “But the more you try to keep a lid on it … it doesn’t give women the true picture of what can go wrong, and then importantly how you can fix things once they have gone wrong.”

Melissa Bubnic, a freelance script writer in London, has been on a waiting list for reparative surgery for more than a year. Bubnic initially realised something was wrong in 2019, three months after giving birth to her second child. Sitting on the bus on her way to an event, she smelled something odd. A visit to the loo confirmed her fears – she had soiled herself. Fortunately, she had wet wipes on hand, but about a month later, it happened again.

When she saw her GP that May, she was referred to pelvic specialists at a London hospital. With demand far outstripping supply for such services, it could take up to a year to get an appointment. Finally, in November 2019, she went for an endoanal scan. “I wanted to believe that everything was OK,” says Bubnic, “so I asked if everything was OK back there. She said, ‘No, it’s really not OK.’”

“It was the first time anyone had told me that something was really wrong – I had had a fourth-degree tear that had been missed.” It was likely, she was told, that the tear had occurred back in 2015, during the birth of her first child, when she was given an episiotomy and forceps had been used.

By May 2020, she still hadn’t been able to see an NHS physiotherapist – and felt as if she was being dissuaded from seeking the opinion of a colorectal surgeon. “I was told that a referral would be made but whenever I called, they couldn’t find the referral in the system. And I had to kind of get a bit cross.” She finally saw a colorectal surgeon in November 2020 and was put on the waiting list for surgery, but the pandemic has increased delays.

Tired of waiting, she took a punt on an advertisement posted by a PhD student investigating the impact of serious birth trauma. She was assessed by a medical team at St Mark’s hospital, a specialist bowel hospital in Harrow, London, earlier this year, and underwent surgery there last month. “I have been so incredibly lucky,” she said.

Both Bubnic and Hackett have sought out private physiotherapy, too. “I just always thought, you have babies, you wet yourself,” says Hackett. “It’s just what you have to put up with. So, to find out that I could rehab my pelvic floor to the level that I have, and it’s still not even perfect … I couldn’t believe it.”

The cost for private physiotherapy can be prohibitive at about £100 for the initial consultation (depending on geography), and slightly lower rates for follow-up appointments.

Many campaigners cite France as a country with better pelvic healthcare. Mothers there are automatically prescribed multiple sessions of physio to “re-educate” their pelvic floor after delivery. But there is acknowledgment that postpartum care in the UK is ripe for improvement, and earlier this year NHS England announced the opening of 14 new pelvic health clinics, bringing together midwives, specialist doctors and physiotherapists to improve the prevention, identification and treatment of pelvic floor dysfunction.

Physical injuries aside, the sexual and mental health impact of postpartum trauma is devastating, says Bubnic. “You just feel so sexless and dirty. Incontinence is so mortifying. The mental health impact of being scared to leave your house, or having an accident – every women who has these injuries has to deal with that.”

When Bubnic first discovered the severity of her injury, she didn’t know anybody else who had faced a similar situation. “I felt so ashamed and embarrassed,” she says. “I need a lot of support around managing the injury and navigating this labyrinthine health system. Even when you want to talk to NHS staff, who are trying to help you, bringing up the sex aspect, everyone looks a bit awkward and doesn’t really know what to say.

“I just don’t believe that if the genders were reversed,” she adds, “if it was men, in the act of becoming fathers, who were ripped from testicles to anus and left incontinent – that we wouldn’t be doing something to address that.”

Latest news

Related news