At 19 Leila Martyn was diagnosed with polycystic ovary syndrome (PCOS) and was told she might have difficulty conceiving. At the time she was a university student.
There was little information around at the time about PCOS. Google and smartphones weren't really a big thing yet, and it wasn't a subject openly discussed.
PCOS is a condition that affects how a woman's ovaries work. Three main symptoms of PCOS are irregular periods – which means your ovaries do not regularly release eggs (ovulation), excess androgen, high levels of "male" hormones in your body - which may cause physical signs such as excess facial or body hair and/or polycystic ovaries – ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs (but despite the name, you do not actually have cysts if you have PCOS).
Even though Leila didn't want children anytime soon, having the choice taken away from her felt like a rug being pulled from underneath her. Armed with very little information, Leila decided to stop using protection during sex.
Three months later she fell pregnant. Now aged 45, she says she felt 'immense shame and embarrassment' at the time.
Leila is now a mum-of-two and has had six miscarriages. She says she has learned to forgive herself for having a termination, as there was a lack of information and education about PCOS then.
Subscribe here for the latest news where you live
When she was diagnosed she didn't tell her mum or her friends because she thought they might not know what it was. She claims her GP didn't ask if she was sexually active and didn't provide any further information on the condition.
Leila got her first period at 16, and suffered from PCOS for four years before her diagnosis. Her periods were 'all over the place', and would come randomly, sometimes after six weeks or longer.
But it wasn't until she went to university and got her first boyfriend that she really realised just how irregular they were. Her GP did some scans and ran some tests before diagnosing her with the condition.
Speaking exclusively to The Mirror Leila said: "I was told I would find it difficult to have children and that was it. That's all she told me I remember leaving the doctors and just being absolutely devastated. All I heard in my head was that I can't have children.
"At that age, you do expect that it would happen in your life. It was like someone pulling the rug from under your feet.
"I was really upset, crying and told my boyfriend at the time and stupidly, I thought 'well it's pointless even using contraception.'"
Three months later, when her period never came, she took a pregnancy test and discovered she was 10 weeks pregnant. "I remember feeling really ashamed," Leila admits.
"How could I have been so stupid? The doctor was so unsympathetic, and asked if I could keep the baby. But I was in the middle of university, I had so much I wanted to do with my life, it wasn't the right time."
She wished there had been post-diagnosis support, which she thinks could have given her the opportunity to ask health professionals some questions about what living with PCOS meant. She was let down by the system, she says, and didn't feel confident to ask for a specialist.
"I think there's a whole conversation around the way that healthcare professionals deliver diagnoses to women because I think it can really impact the quality of their life and how they deal with the condition," she adds.
"At school, they don't teach you how to get pregnant, they teach you how not to. There is a real lack of education for every woman about fertility.
"Looking back it was like 'what were you thinking'. I thought it was all my fault and it didn't even occur to me to think about failings in the system for that to happen.
"I now forgive myself for feeling that way. I should have had more support and education about it."
Leila is telling her story in a bid to help others and raise awareness about PCOS. She is campaigning to have information and education about the condition on the secondary national curriculum.
Leila questions whether what happened in her late teens and the trauma she endured then affected her chances of having a baby later in life. She went through her twenties questioning whether she could ever get pregnant again.
A symptom of PCOS is difficulty getting pregnant as a result of irregular ovulation or no ovulation - but Leila didn't have this problem. When Leila met her partner at 32, they started trying for a family two years later.
She managed to get pregnant multiple times, but her body struggled to keep them, having six miscarriages before welcoming Louie, now 5, in 2017, followed by Luca, now 3, in 2019. There are two miscarriages in particular that left their mark - the first was when she went for her 12-week scan and they found an empty sack with no baby, and the fourth, she says, was the worst experience of her life.
She suffered from a rare circumvallate placenta at 18.5 weeks in 2015, where she was told her baby was unlikely to survive after birth and so took a tablet to stop the baby's heartbeat. "Because the baby had formed bones, I had to give birth," Leila explains.
"I had to go to a labour ward with all of these women having babies and I was there for 17 hours. That was really hard. The worst experience of my life.
"In the UK, you don't get a death certificate until 24 weeks so it was still called a miscarriage. But in my mind, I gave birth to my baby girl. It was absolutely devastating." Leila underwent tests to see if there was anything wrong, but they came back all clear.
However tests at a private fertility clinic showed she had high NK cells - which can be associated with miscarriage - and was prescribed a low dose of steroids and Intralipids to suppress her immune system. "I was at my lowest point," Leila says, speaking of how she felt after her traumatic fourth miscarriage.
"I totally withdrew from everybody. I felt ashamed as a woman - it is the one thing your body is supposed to do, to have a baby. A lot of my friends were having babies and I found it difficult to be around them. Even though I was happy for them but I felt guilty about not wanting to see them."
Her partner and mum encouraged her to keep trying, and she eventually welcomed Louie at 39 and then Luca at 41. Before falling pregnant with Louie, Leila searched online for supplements to help with egg quality and realised there was a gap in the market.
The mum-of-two, who previously owned a talent agency, set up a wellness brand - My Ova - with her partner in 2016, which supplies supplements to help with PCOS. "I constantly get emails from women sharing their stories and that's when I realised there is a real problem with the lack of education around this condition," Leila continues.
"Women have been at the bottom of the agenda for health, even though we live longer and have more ailments because of our biology yet there seems to be zero education about it [PCOS]. If we knew more, it would save so much time getting diagnoses. We're going round the system for years and are often turned away by doctors because of a lack of training in women's health."
Last year, the Department of Health launched its 10-year Women's Health Strategy, which aim is to radically improve the way in which the health and care system engages and listens to all women and girls. Leila argues that both boys and girls being taught more about women's health in school will improve health outcomes and has launched a Parliament petition to see the conditions on the national curriculum.
She also highlights studies that show there are secondary illnesses from PCOS going undiagnosed, such as Type 2 diabetes - which in turn could save the NHS millions. "It's a failure on lots of different levels. It needs to be compulsory for doctors to be trained on this and gynaecology problems need to be taught in schools," she adds.
"Girls can then advocate for themselves and push for a diagnosis and second opinion. When you don't know, you don't feel confident.
"That's where the issue lies - we need them in a position where they can advocate for themselves. It would have huge effects if these conditions are nipped in the bud. Why should our health suffer because we are not informed?"
A Department for Education spokeswoman said: "Schools can tailor their teaching to address the issues that their pupils face, including focusing on specific questions around health as part of the relationships, sex and health curriculum.
"The aim of teaching pupils about their physical and mental health is to provide them with the information needed to make good decisions regarding their own health, recognise any issues in themselves and others and seek necessary support as early as possible if issues arise, from appropriate sources."
To sign Leila's petition, you can do so here The petition ends on March 22 and if it achieves 100,000 signatures, the topic will be considered for debate in Parliament.
