Crippling pain and infertility – my story of polycystic ovary syndrome
Diagnosed with polycystic ovary syndrome at age 21, following years of pain, Nicole Gaule was conscious of its implications for her dream of a family. She tells Liadán Hynes about her journey to motherhood and her beautiful daughter, Faith
Nicole Gaule, now 34, was aged 15 when her mother first brought her to the doctor about her heavy, painful periods. “From my first ever in sixth class, I had very, very heavy periods. My mother knew there was something not right,” Nicole recalls now, explaining that she was put on the contraceptive pill, but it made no difference.
The pain was excruciating, Nicole says, adding that she would spend a lot of time on her hands and knees during menstruation. She regularly missed school and suffered elevated stress levels.
“When I was 16, after four years of constant crippling pain, they eventually referred me for an MRI,” she says now from her home in Carlow.
Nicole’s periods would go on for weeks. In between, she would suffer cramps and regular UTIs. Her social life suffered, the pain inhibited her ability to see her friends, and instead she would spend days in bed.
There was also the fear of leaking because of the heaviness of the bleeding. “Sometimes it put me off because it could be embarrassing; I never knew when it would come. It happened on a train once,” she recalls. “They had to close off the whole four-seat area. The train driver wanted to ring an ambulance. But I knew it was my normal. My father was with me, which made it even more embarrassing. It was like someone had been massacred.”
The MRI confirmed she had a bicornuate uterus, although her doctors did not feel this was the cause of the pain.
“A normal uterus is pear-shaped. A bicornuate uterus is in the shape of a love heart,” Nicole explains. “Mine was a bit more complicated because there was one horn that was nearly separate from the rest of the womb. That came with a detached fallopian tube. “
At the age of 19, Nicole had surgery to remove her appendix, which was about to burst, but her doctors discovered that the real cause of the pain was fluid which had built up on her pelvis. The right horn of her uterus was holding onto fluid. Referred to Dublin’s Coombe Hospital, she was told at this point that she would not be able to conceive naturally.
She was referred to the Rotunda, and
advised that even though she was only 19, it was better to get in the system to begin the process of getting checked out, so when she was ready to have children, things would hopefully be sorted.
“It was a lot to have to think about at that age, but I suppose I was probably more mature than the average 19-yearold,” Nicole reflects now. “I knew that I wanted kids. I didn’t want them right then, but once I knew there were going to be issues down the road, I kind of got on it.”
It wasn’t until she was 21 that she was eventually diagnosed with polycystic ovary syndrome (PCOS). Nicole’s symptoms included weight gain, particularly in the abdominal area, bloating, fatigue, agitation, acne, hormonal rages, anxiety and depression. She was still suffering particularly heavy periods, some months she would bleed heavily for a fortnight, stop for a brief period, then begin bleeding again, meaning she could bleed for up to five or six weeks at a time.
“There’s so many things about polycystic ovaries that people don’t realise. I met so many doctors over the years, and so many of them had a different diagnosis. It was very confusing. It was really when I got to the IVF clinic in the Rotunda, when I was 21, that they kind of got me a concrete diagnosis after all those years.”
PCOS is a condition which can impede a woman’s chances of conceiving.
“The syndrome is characterised by irregular cycles,” explains Dr Renato Bauman, a fertility consultant from the Rotunda IVF. “Ladies who have polycystic ovaries have too high a number of follicles, which creates a hormonal imbalance in the body.”
Irregular cycles, and a higher body mass index, are symptoms of PCOS, Dr Bauman explains. The condition creates slightly higher male hormones in a woman’s body, which affect the ovulation pattern, causing fertility problems. It can also lead to oily skin, and unwanted excess hair on the legs and face. Contraceptive pills can have a positive impact on this aspect of the condition.
“It’s a condition that can be treated,” Dr Bauman adds. “One very important issue is the body mass index. It is known that by losing just 10pc of the body mass, a good number of ladies restore the ovarian function and the hormone balance in the body.” Efforts to lose weight can be impeded by the fact that those with PCOS often experience insulin resistance, but there are treatments to counter this, Dr Bauman explains.
For several years, Nicole abandoned her investigations with the Rotunda IVF clinic. Then, in 2013, she met her partner Noel. “Because I was getting older, the PCOS became more of an issue, because it can affect the quality of the eggs and stuff like that,” she explains.
“I basically told him straight out, ‘if we’re going to be serious, then we’re going to need IVF. And I do want a baby’. He was like ‘OK’. He was very easy going about it. He’s six years older than me, so it wasn’t that much of a shock to a 32-year-old, me saying I want a baby.”
They began IVF treatment in 2016 with the Rotunda IVF, which is part of the Sims IVF Group. “It is hard going on a relationship, no matter how long you’re together,” Nicole admits. “You will meet a lot of bumps in the road, and it can get very stressful.” The couple have had three miscarriages. “But we were strong enough to get through it, thank God. It actually made us stronger as a couple, you know?”
In October 2017, on their third round of IVF, they had a successful frozen egg transfer. Their daughter Faith is now two years old. “We kept the faith, and it worked, so that’s why we called her Faith,” Nicole says, explaining that the first and second cycles of IVF were, devastatingly, cancelled.
“It’s financially, emotionally and physically exhausting doing IVF. Some people are so lucky, and get pregnant on the first round. But not everybody is.”
Nicole’s periods are still painful, but not to the extent that they were in the past.
“It impeded my work, my social life. I wouldn’t be able to go on a night out if I was due my period, because I would be absolutely crippled with pain.”
One job in a garage involved standing behind a deli all day. Nicole describes how the blood would soak through her clothes, despite wearing four to five sanitary towels at a time.
“My doctors think I’m getting a double period every month, because the two horns have a fallopian tube, so I could be releasing from both sides, ovulating from both sides.” In the early years, before she became a patient at the Sims IVF clinic, she felt from her doctors, a certain sense of “‘you have this, go home and deal with it’. There was no ‘we’ll do more investigations’.”
“The classic symptom of PCOS is not having regular periods,” explains Dr Rita Galimberti, community gynaecologist and Medical Director at Femplus Clinic in Dublin. “The reason why is that women with PCOS don’t produce an egg very regularly; PCOS is an ovulation disorder.
“If you don’t produce an egg very regularly, then when you want to have a baby, we need to do something to help you.
“That sometimes can just be tablets to make you ovulate more regularly. Only in cases where things are more difficult, might you end up having IVF. But a lot of patients need very little to get pregnant.”
The most important thing, she says, for patients with PCOS who want to get pregnant, is to keep their weight under control. “Because for some reason when the weight goes up a lot, it’s very hard to treat the ovulation as well.
“It is also crucial for people with PCOS, who have a little bit of a higher risk of developing diabetes. It’s linked to the fact that insulin is involved in the ovarian function. And because they have high insulin resistance, they can develop diabetes in pregnancy or when they are older.”
Since giving birth to her daughter, Nicole’s periods have become lighter. “The pain, thankfully, is very minimal. Nothing to the degree of what it was. I don’t have that thing of being afraid to go out of the house in case I destroy myself.”
When Faith was 10 months old, Nicole became pregnant, but had a miscarriage at six weeks.
“That kind of put me off going again for a long time,” she says now. “Because minding a toddler, and then going through all that, is hard going.”
The couple are now considering trying IVF again, although Nicole admits that they are wondering whether they should wait out Covid, so that she will not have to attend apportionments on her own.
“We’re kind of waiting to see how things go,” she reflects. “I feel now like I’d be stronger; better able for it. Because I am a mother now. It’s harder when you don’t have the baby at home, because you’re putting everything into it.”
‘I met so many doctors over the years, and so many of them had a different diagnosis. It was very confusing’