How It Feels To Have Your IVF Paused For A Year

Fertility services were meant to resume in May 2020 – but some couples are yet to start treatment.

It’s almost nine months since NHS fertility services were officially told they could resume during the pandemic, but couples across the country are still waiting for appointments.

Emma Jones* and her husband were referred to fertility specialists at the end of 2019, after more than two years of trying to conceive. But more than a year later, they’re yet to start treatment. Since March 2020, they’ve had seven appointments with their consultant cancelled.

“It’s been a year of our life just waiting. It’s been very frustrating and mentally draining,” says Emma, 30, from Wolverhampton, West Midlands. “Every time an appointment is cancelled, it just feels like our hope is shattered a little bit more.”

Malte Mueller via Getty Images

One of the cancelled appointments was a scheduled phone call, which Emma booked time off work to take in private. She sat by the phone all day, but no one called. Other disappointments have come through the post.

“Before Covid, we got a letter through and it would be excitement that we were moving on to the next step,” she says. “Now, when we get a letter and see that header on it from the NHS, we feel dread. The goal post feels like it’s moving further and further away.”

Others have faced a similar plight. The community and support group Fertility Help Hub has surveyed more than 100 women across the UK who’ve had fertility treatment delayed or cancelled due to the pandemic.

All of the women interviewed said they feel mentally traumatised by the set-backs caused from delays, and more than half (55%) said they’ve received no clear guidance or support from their clinics.

Nearly half (47%) of women said they worried the delays could spell the end to parenthood for them, while two-thirds will risk putting themselves under financial pressure to go private.

Lydia Mortley and her husband Richard are among those who’ve sought private treatment. The couple, from Canterbury in Kent, were originally NHS patients awaiting IVF. But while chasing the consultant for their next appointment in the first lockdown, the secretary told them they’d be lucky to have IVF within the next 18 months.

Lydia Mortley and her husband, Richard.
Lydia Mortley
Lydia Mortley and her husband, Richard.

“I don’t think words depict the devastation we felt,” says Lydia, who’s 29. “My husband and I had been longing for a baby for three years at this point, and whilst we understood that delays would occur due to the lockdown, it didn’t help the pain and heartbreak that we both felt.

“We were disappointed, angry, upset and desperate for our own family.”

With no clear indication when their NHS treatment might resume, the couple decided to seek a second opinion at a private clinic. They were informed that Richard’s sperm count had decreased rapidly since his initial NHS tests, and were advised to start treatment without delay.

“We had to make a decision on a baby or a house,” says Lydia. “With our clock ticking, we felt that the baby was the most important part of the puzzle that was missing for us.”

The couple felt fortunate to be able to afford treatment, but there were still costs they hadn’t accounted for, including scans, blood tests and medication during egg stimulation.

They had embryos frozen in September, but sadly, their transfer at the end of November failed. Further tests revealed Lydia has developed a block in her left fallopian tube, which requires an operation before another embryo transfer can take place. The NHS told her this operation is unlikely to go ahead until 2022.

“I’m worried about the future of becoming a parent,” she says. “With this long wait comes the worry of: ‘What if my fallopian tubes get worse? What if my womb becomes toxic and no embryo survives?’ Your mind plays so many cruel tricks on you with images of having a baby, followed by your worst nightmare, where IVF might not work.

“You begin to lose hope, you start to question whether you have done something horrifically wrong in your life to warrant such heartache and loss, over something you haven’t even yet had.”

The mental health burden on women of all ages facing IVF delays is undeniable. But separate research recently published by the University of Aberdeen is the first to show that delays in treatment will actually result in fewer births, particularly in women over 40.

The researchers used national data to predict the consequences of delaying the start of IVF for either six or 12 months, in different groups of women.

They found the tangible impact of delays will be most profound in the 40-42 age group, resulting in live births among these women dropping by almost a quarter (22.4%).

The research also looked at the impact of delays on couples with unexplained infertility, compared to those with a known cause of infertility. The results found that some couples with unexplained infertility were likely to conceive naturally during delays, but the impact will be felt more acutely by those with known causes of infertility, who require further treatment.

Waiting for the operation to clear the block in Lydia’s fallopian tube has been tough for the couple. “Our main concern is if this is ever going to happen for us,” she says. “If it doesn’t happen, are we happy just being an auntie and uncle to our amazing niece and nephews? Are we enough for each other?”

Meanwhile, Emma and her husband have finally had a phone call to confirm results from tests they had in the first week of March last year. They’ve received a frustrating diagnosis of “unexplained infertility” and have been advised to have IVF. They’re awaiting yet another call, to confirm when this might happen.

Adding to the frustration, the blood tests they had at the start of their fertility journey are now out of date, so they’ve had to arrange further appointments. Without the money to fund IVF privately, they’ve started to consider other options.

“We’ve spoken about adoption. At the beginning, if someone mentioned adoption I would have broken down,” says Emma. “At first, I just wanted to be pregnant. But now, we just want to be parents. Whether that’s biologically our child or not is something we’re starting to come to terms with a bit more.”

Despite all the worries, Lydia is still hopeful she’ll have her baby through IVF. “I know in my gut that our child will be so loved and encouraged to be whatever and whoever they want to be and I cannot wait to meet them,” she says.

“The day I finally get to look into their eyes will be the best feeling in the world; it will be the best gift that my husband and I could have – our lives would be complete.”

HuffPost UK has contacted the Department of Health regarding delays to fertility services and the impact on patients. We’ll update this article when we receive a response.

*Some names have been changed to provide anonymity.