Some 200 million women and girls across 30 countries have been affected by female genital mutilation (FGM). But how do survivors live with the pain of peeing, periods and childbirth?“The first time you notice your physicality has changed is your pee,” says Hibo Wardere.
Hibo, now 46, was subjected to what is defined by the World Health Organization (WHO) as “type three” mutilation when she was six. This means all of her labia were cut off and she was then stitched together, leaving a tiny hole she compares to the size of a matchstick. Her clitoris was also removed.
She grew up in Somalia, where 98% of women and girls between 15 and 49 have had their genitals forcibly mutilated.
“An open wound rubbed with salt or hot chilli – it felt like that,” she recalls.
“And then you realise your wee isn’t coming out the way it used to come. It’s coming out as droplets, and every drop was worse than the one before. This takes four or five minutes – and in that four or five minutes you’re experiencing horrific pain.”
Hibo came to the UK when she was 18, and within months visited a doctor to see if they could relieve the pain she experienced when she passed urine and during her periods.
Her translator didn’t want to interpret her request, but the GP managed to understand.
Eventually Hibo underwent a procedure called defibulation, when the labia is opened surgically. This widened the hole and exposed her urethra. It is by no means an outright fix, and can never restore sensitive tissue that was removed, but it did make it slightly easier to urinate.
Sex, however, presented a new hurdle. “Even if the doctor has opened you up, what they’ve left you with is a very tiny space,” says Hibo.
“Things that were supposed to be expanding have gone. So the hole that you have is very small and sex is very difficult. You do get pleasures – but it’s once in a blue moon.”
The trauma of the assault also had a bearing on intimate situations with her partner.
“First you have a psychological block because the only thing you associate with that part of you is pain,” says Hibo.
“The other part is the trauma you experienced. So anything that’s happening down there, you never see it as a good thing.”
Figures released by Unicef in February raised the number of estimated FGM survivors by around 70 million to 200 million worldwide, with Indonesia, Egypt and Ethiopia accounting for half of all victims.
In the UK, FGM has been banned since 2003. Last year the government introduced a new law requiring professionals to report known cases of FGM in under-18s to the police.
Activists and the police have raised awareness about the risk of British school girls being flown out of the UK specifically to be stripped of their genitals during what is known as the “cutting season” over the summer.
However, little is known about how the millions of survivors – including at least 137,000 in the UK – cope.
The repercussions of a procedure that either involves removing the clitoris (type one), removing the clitoris and the inner smaller labia (type two), removing the labia and a forced narrowing of the vaginal opening – usually, as in Hibo’s case, removing the clitoris too (type three), or any kind of harmful mutilation in the genitals (sometimes referred to as type four), are wide-ranging.
The symptoms are not normally discussed in the open, partly because FGM is so normalised among some communities that women don’t think of it as a problem, or even connect their myriad health problems with their experience of FGM as a child, says Janet Fyle, professional policy advisor at the Royal College of Midwives (RCM). Last year, Fyle was awarded an MBE for her work in tackling FGM.
I remember taking the pillow and just putting it on my face because I didn’t want the humiliation, the pain
The day-to-day reality for survivors can be bleak. TheNHS lists urinary tract infections, uterine infections, kidney infections, cysts, reproductive issues and pain during sex as just some of the consequences. A “reversal” surgery, as defibulation is sometimes termed, can help to relieve some of the symptoms by opening up the lower vagina.
“But it’s not as simple as carrying out the physical care, which we can carry out as clinicians,” says Fyle, who comes from Sierra Leone, where FGM is widespread.
“It’s about the long-term (psychological) consequences – some people describe it as worse than PTS (post-traumatic stress), which soldiers in the battlefield have.”
When Hibo became pregnant for the first time in 1991, aged 22, she says she was tortured by the idea of medical staff looking at her genitals, which had been physically altered.
“I remember taking the pillow and just putting it on my face because I didn’t want the humiliation, the pain,” she says. “Knowing all those eyes were going to look at me, was too much.”
During the birth, she experienced flashbacks of being cut – which is a common experience of survivors. At the time, she was the first FGM survivor that staff at the hospital in Surrey had seen. Neither she, nor they, had any idea how to try to make the birth easier.
“Before they could even think of what was going to happen and how they’re going to deliver this boy, my son