Polycystic ovaries, IVF and the fight for fertility
Emma Johnson talks us through her seven-year journey to motherhood.
By Claudia Robinson
Emma Johnson wanted children for as long as she can remember.
But, from a young age, she knew that getting pregnant wasn’t always easy.
Her aunt had IVF, so she was aware of the challenges some women face in becoming a mother.
“I think this had a profound effect on me,” says Emma, from Ferryhill. “It was my worst nightmare – nothing in the world bothered me more than not being able to have a family.”
But Emma’s worst fears came true when – 10 years ago, aged 23 – she was diagnosed with polycystic ovarian syndrome (PCOS). The doctor told her if she didn’t have a child before she was 30, she probably never would.
“Talk about pressure!” says Emma. “At that age, I don’t think many people are ready to have children, and I wasn’t in a position to either.”
Emma met her husband, Jimmy, when she was 16 and he was 19, although they didn’t get together until 2015.
“We’d known each other since we were kids,” Emma continues. “When we finally got together, we knew it was forever. We thought: ‘let’s get a jumpstart on beginning our family’, because we knew that with my PCOS, we’d probably have to put some effort into it.”
Their seven-year struggle to conceive began.
After two years with no success, the couple went to their GP. They were referred to the assisted conception unit, where the consultant advised Emma that she needed to lose four stone in weight.
“I’ve always been curvy, but never huge,” says Emma. “It was a bit of a shock. It was all about getting my BMI down for treatment.”
She did and, 18 months later, Emma started taking a fertility medication that can help induce ovulation in women who do not ovulate on their own. But it didn’t work for Emma, despite medics changing the dosage.
“That was October 2018,” she remembers. “I was told I wouldn’t be able to receive any further hormone treatment as it was too risky. I was so frustrated – how was I meant to ovulate if I couldn’t get the treatment to help with that?”
A POSITIVE PREGNANCY TEST
The next step was to have a procedure called laparoscopic ovarian drilling, which can correct the hormone imbalance affected by PCOS. On Emma’s first cycle after the surgery, she fell pregnant.
“It was New Year 2019, and it was perfect,” Emma remembers. “I had all the usual pregnancy symptoms, no signs that anything was wrong. However, a private scan at eight weeks showed that my uterus was empty. It was horrendous – I’d had no pain, no bleeding, I felt pregnant and nobody was going to tell me otherwise.”
Emma had an ectopic pregnancy. She was rushed into emergency surgery to have a fallopian tube removed – making her chances of having a baby even smaller.
THEIR FIGHT FOR FUNDING
The next step for Emma and Jimmy was IVF. But, because Jimmy already had a daughter from a previous relationship, they weren’t eligible to receive the treatment on the NHS.
By this time, Emma and Jimmy were angry.
They fought tooth and nail to try and get further help – which involved visiting multiple doctors, writing to their MP, and approaching their CCG direct.
“Each time, the door was slammed in our faces,” says Emma. “Even our families got involved in trying to get some support. But, ultimately, we were refused NHS IVF treatment and nothing was going to change that.
“In the end, we knew our only option was to go private. It was so expensive, but I knew I would never forgive myself if I didn’t try.”
The couple chose Woodlands Hospital in Darington and went for their first appointment in August, 2020.
Emma was told she needed to lose another two stone before she could start the treatment.
“My first reaction was: ‘you’re joking?!’” she remembers. “We’d gone through five years of trying to conceive, to then be told I needed to lose more weight. But I was prepared to do whatever it would take.”
IVF doesn’t come cheap, so the couple needed to find a way to fund the next stage in their journey. Emma came across a company online called Access Fertility, who provide IVF treatment and offer a range of different programmes to suit individual couples’ needs and budgets.
Patients can fix the cost of private IVF treatment: ultimately making a saving if they’re successful in conceiving and receiving a refund of up to 100% if they don’t have a baby.
With the UK average success rate for live birth per cycle at 23%, it’s likely that most patients will need multiple IVF cycles to successfully carry a baby to full term.
“We looked at how much we could afford to spend and worked out that the only way it could be cheaper doing it without the IVF Refund Programme was if it worked first time, without even needing a frozen embryo transfer,” Emma explains. “I knew that, with our luck, we’d need more than one cycle. Ultimately, we knew that even if we went for the cheaper 50% refund option and the treatment didn’t work out, we’d still get enough back to have at least one more attempt.”
Their first IVF cycle was meant to start in December 2020, but Emma had an ‘abnormal ovarian response’ and her ovaries only produced one egg.
The consultant explained there wasn’t any point in doing the egg collection. Fortunately, Access Fertility told Emma they’d disregard that cycle in the programme, which was a huge relief to her and Jimmy.
In Spring 2021, they tried again on a new medication protocol. It was a success and on 1st April Emma had a positive pregnancy test.
“We went in to collect the next phase of medication. Sadly, in the car on the way home, I miscarried,” Emma remembers. “It was like an awful April Fool’s joke.”
They tried their second round a couple of months later, where four eggs were collected but none of them survived before embryo transfer. By this point, Emma and Jimmy were running out of hope.
“Third time round, we knew it was our last chance,” says Emma. “I asked the doctor to give me everything they could to give us the best possible chance of success – I didn’t care if I hyper-stimulated. He explained that he couldn’t do that, as he needed to work within the guidelines to keep me safe, but he did agree to increase the dose slightly.
“I remember the egg collection well because it was more painful compared to the other two. All the same, the clinic got in touch to say they had two really good quality embryos.”
This time, Emma and Jimmy had a positive pregnancy test. At six weeks, they went in for a scan.
“I went in all excited. Having had so many scans, I’m familiar with how everything is meant to look. I could see what looked like the gestational sac, right there in my uterus, and I was so happy. But the consultant said he couldn’t see an embryo and told us he couldn’t give us false hope, and we potentially had a blighted ovum.
“We had to go to the early pregnancy assessment unit on 9th September, 2021. They told us that everything was fine, but the embryo looked a bit smaller than they’d expect. The next week, when we came back, the embryo hadn’t grown. On 23rd September I went back again, and they confirmed I was having another miscarriage.”
AN UNEXPECTED MIRACLE
On New Year’s Day, at the start of that same year, the couple had got engaged. After such prolonged tragedy, they decided to focus on their wedding planning for the foreseeable future.
“That way, we could have a nice long break from it all, and perhaps we’d be lucky on our own. If not, we could always try again with the refund money from Access Fertility,” says Emma.
When the couple’s wedding day came – on 8th September, 2022 – there was plenty to celebrate. Not only was Emma marrying the love of her life but, on her wedding morning, Emma also discovered she was pregnant.
“It came as a total shock!” Emma laughs.
An unexpected miracle for the couple and, after seven challenging years, confirmation that they’ll finally hear the pitter patter of tiny feet in May this year.
“We’re planning on using our refund money from Access Fertility for the baby shopping we never thought we’d get to do!” Emma smiles.