Dare you risk IVF?

It’s a booming £500-million industry, but at what cost to those going through it? Emma Elms reports.

Many women who want a baby seem prepared to risk their health, even when there is no guarantee of success. Nearly 50,000 women in the UK have IVF each year (pic posed by model)

Many women who want a baby seem prepared to risk their health, even when there is no guarantee of success. Nearly 50,000 women in the UK have IVF each year (pic posed by model)

Claire Dower, 35, spent more than £20,000 on IVF, had eight rounds of treatment, and often travelled 600 miles in a day just so that she could go to a clinic in London. Nothing would have got in the way.

During one cycle, Claire, a laboratory technician from Cornwall, had agonising abdominal pain. Doctors continued the treatment regardless. It later emerged that she had developed ovarian hyperstimulation syndrome (OHSS), a potentially life-threatening complication of IVF, where the injected hormone produces too many eggs.

‘I was bedridden for two weeks and then found out that the treatment hadn’t worked,’ says Claire. ‘But we were so desperate for a baby, nothing would have stopped us.’

Claire recovered and, two years on, is seven months pregnant. But not every story has a happy ending. Symptoms of OHSS include weight gain, vomiting, shortness of breath and – in rare cases – death. Mild OHSS occurs in one in three IVF cycles; moderate to severe OHSS occurs in up to eight per cent of cycles. For Lee Cowden, 37, a teacher from Surrey (see below), OHSS triggered a heart attack.

It is 38 years since the birth of Louise Brown, the world’s first test-tube baby, but experts argue that the original 1990 health and safety laws surrounding IVF (updated in 2008) have failed to keep pace with new techniques and drugs.

However, many women who want a baby seem prepared to risk their health, even when there is no guarantee of success. Nearly 50,000 women in the UK have IVF each year, yet women under 35 have just a 32 per cent chance of having a baby; for women aged 40 to 42, the odds fall to 14 per cent.

Earlier this year, Siobhain McDonagh MP called on Parliament to update the Human Fertilisation & Embryology Act to protect women undergoing IVF. ‘The act contains failures that are endangering women’s lives and long-term health,’ she said. ‘It requires clinics to take into account the welfare of the child before providing IVF treatment, while the women’s welfare is not considered.’

The National Institute for Health and Care Excellence (Nice) recommends that women under 40 who don’t already have children are offered three free cycles of IVF, while those aged 40 to 42 are given one (women over 42 are not eligible on the NHS). In practice, many couples, due to which region they live in, cannot get access to IVF on the NHS at all and must resort to private treatment. For them, regulation is even more important.

Professor Geeta Nargund, a fertility expert, calls the industry ‘the Wild West’ and believes the private sector desperately requires tighter rules. ‘First, there needs to be an explicit obligation for clinics to take into account the welfare of women undergoing fertility treatment,’ she says.

‘Second, the Human Fertilisation & Embryology Authority [HFEA] should be collecting information from all clinics relating to the doses and drugs given to women during IVF.’ This would enable the HFEA to better monitor the effectiveness and side effects of treatments.

Professor Nargund is medical director of Create Fertility, a private clinic, and a lead consultant for reproductive medicine services at St George’s NHS hospital in Southwest London. She specialises in natural and ‘mild’ IVF, which uses minimal or no drugs, and involves doctors working with a woman’s cycle to collect a naturally produced egg, which is then fertilised in a laboratory with her partner’s sperm. She is working with McDonagh to highlight the need for tighter regulation.

Professor Nargund points out that all IVF clinics must report ‘serious’ adverse effects of fertility drugs to the HFEA, but adds that they don’t have to reveal which drugs they’re using or the dose. Some clinics, she warns, could be using higher doses to generate more eggs while putting women’s lives in danger. She adds that women are at risk of being sold drugs, procedures, tests and add-ons (from immune therapy to advanced sperm selection) without understanding which ones they actually need. ‘Women going for IVF can end up paying three or four times what’s quoted,’ says Professor Nargund.

When couples arrive at a fertility clinic, they are often determined to do everything they can to ensure success. Lucy Thomas, 31, a former lawyer from Bristol, is about to undergo her eighth IVF cycle. Early on, she paid £500 for a fertility MOT from a private clinic, only to be given a sheet of bewildering numbers. ‘We had to chase them for an interpretation. It confirmed that the blood flow to my womb was fine, which we already knew.’

Another time a clinic insisted on giving Lucy a cervical dilation costing £2,000 – even though Lucy had explained that her cervix was already dilated from previous surgery.

The HFEA advises women to ask how much treatment might cost before they embark on IVF. Its website also lists questions to ask the doctor to avoid unnecessary add-ons, as well as clinics and their success rates. But this doesn’t stop women getting into crippling debt in their desperate bid for motherhood.

¿If one partner can¿t have children, they often feel extremely guilty, as if they¿re letting the other one down,¿ says Susan Seenan, chief executive of Infertility Network UK (pic posed by model)

‘If one partner can’t have children, they often feel extremely guilty, as if they’re letting the other one down,’ says Susan Seenan, chief executive of Infertility Network UK (pic posed by model)

Claire Dower and her partner Danny sold their two-bedroom cottage in Cornwall and moved into a caravan on her father’s drive to fund their IVF treatment. Lucy and her husband have spent £40,000 – they have borrowed £20,000 from their parents, racked up £18,000 on their credit card and had to move to a cheaper home.

‘People have told us that we should give up,’ says Lucy. ‘We have agreed that we will do one more round of IVF and then consider adoption, but it’s not an easy decision.’

Such eye-watering figures are not uncommon. Sarah*, 38, a marketing manager from Sussex, and her partner have spent £51,000 on IVF.

‘We remortgaged our flat to raise £35,000, used £11,000 of savings and inheritance, and then, when the clinic suggested we try one last round, I took out a £5,000 loan from the bank and pretended it was for home improvements. I’ve spent £14,000 on fertility drugs alone.’

Sarah admits that she is reluctant to stop. ‘You feel you should try just one more time,’ she says. ‘People don’t understand what you’re going through.’

Sarah eventually went to a private clinic in Spain. ‘I compared success rates from all over the world, and those at Spanish clinics were higher,’ she says. ‘They offered a technique called preimplantation genetic screening (PGS), which tells you the quality – and, therefore, the viability – of your embryos from the start. It’s widely used in Spain, but only available in some clinics in the UK.’

Sarah says the clinics seemed more advanced, even though there is no regulatory body in Spain. ‘They do use double the dose of fertility drugs, which is frowned on here,’ she adds, ‘so I was worried initially because it’s the big unknown.’ The clinic pointed out the risks of OHSS, but that didn’t put her off. ‘What’s the alternative – not having children?’ she says. After three years and 15 rounds of treatment, Sarah is finally pregnant.

As well as the physical risks and the potentially crippling cost, women must brace themselves for the emotional toll of treatment. For Sarah, this was linked to the side effects of Clomid, a fertility drug she was given in the UK. She suffered mood swings (‘I found myself screaming at a stranger in the street,’ she says), hot flushes and blurry vision. ‘I couldn’t see properly. That was very scary. Going through IVF grinds you down. Fortunately, I have a really supportive partner.’

A supportive partner or network of caring professionals, it seems, is key. Katherine*, 35, suffered a mental breakdown after her first cycle failed and was signed off work for two months. IVF has also put huge pressure on her marriage.

‘Tom walked out many times,’ she says. ‘He didn’t want to tell his parents what we were going through, so instead of staying with them, he’d sleep in the car. We’d start arguing about something insignificant, then he’d drop the bombshell, “I can’t give you a child; maybe you’d be better off going elsewhere.”’

Katherine adds that she felt closer to Tom during the initial stages of IVF. ‘During the treatment itself we bonded,’ she says, ‘but when it didn’t work, our lines of communication broke down.’ The couple went to counselling at Relate. ‘I’ve realised I was so caught up in my own anger and isolation that I didn’t consider what Tom was going through, or how guilty he felt that the IVF had failed,’ she adds.

Susan Seenan, chief executive of Infertility Network UK, a support group, confirms that IVF often leads to difficulties in relationships. ‘If one partner can’t have children, they often feel extremely guilty, as if they’re letting the other one down,’ she says. ‘IVF can be hugely stressful, and the drugs have a massive impact on some women. It can be hard when one partner wants to stop treatment and the other wants to carry on.’

Charlotte*, a 48-year-old writer and teacher from London, suffered a difficult break-up due to IVF. ‘We knew immediately that we wanted to start a family,’ she says of the man she believed to be her soulmate. ‘He was 38 and I was 41, so we agreed it was now or never. I’d had two abortions when I was younger, so I didn’t think I’d have a problem conceiving. However, after two years of trying naturally nothing happened.

‘You’d think going through IVF would bring you closer,’ she says, ‘but it wasn’t like that for us. I felt l was letting him down by not getting pregnant and that the pressure was on me to make it work, to take care of myself and eat the right foods.

‘He wasn’t supportive or loving and we got into an argument. I sat in bed after one round of treatment, crying, saying: “I could be pregnant with twins right now and you’re making me feel like you don’t really want a child with me.”’

Two weeks later, Charlotte found out she wasn’t pregnant. ‘We went on holiday to put everything behind us. But a month later, he ended it. I was devastated. Looking back, we focused on getting pregnant when we should have been getting to know each other and having fun.’

It took Charlotte two years to get over the split, including a year of therapy to accept that she wouldn’t have children, but she is now happy with her new life. ‘I travel a lot; I’ve made some amazing friends and I’ve started teaching kids, which I love,’ she says. ‘I may not have a child of my own, but I am completely fulfilled.’

Susan Seenan says that most of the couples who contact Infertility Network UK do stay together. ‘The majority go through a difficult time and come out the other end stronger as a couple,’ she says, ‘whatever the outcome.’ But couples do have to be prepared for the ups and downs.

Despite the expense, the health dangers and the strain on relationships, not one of the women I spoke to said that they regretted their decision – even if the treatment was unsuccessful. But even if women are willing to go to such lengths, they should still know the huge risks involved.

With thanks to fertilityroad.com.

‘We spent £200,000 on IVF’

Shoe and clothing designer Marta Jonsson, 46, spent about £200,000 on nine rounds of IVF and other treatments before conceiving her daughter Lolita, now five. She lives and works with her husband Ulli in North London.

I have wanted children ever since I was a little girl. Ulli and I started trying for a baby just before my 30th birthday, but when I hadn’t become pregnant after three years, I went to see a doctor.

I had IVF treatment on the NHS twice, but I felt uncomfortable about it all, so I starting looking into other options. A friend told me about a private clinic called ARGC in London, where I met Dr Taranissi. I had to visit the clinic every day (an hour each way, then up to two hours for each session), which wasn’t easy when I was running a business. I took the medication with me to meetings and had to go to the loo to inject myself.

My attempt to have a baby often felt like it was taking over my life. The hormones affected my moods and I felt constantly bloated. It was emotionally and physically draining. But I was fortunate that I was my own boss and worked with Ulli, who was incredibly supportive.

Over seven years we spent between £10,000 and £17,000 on each round of treatment. As well as paying the clinic, I had massages, acupuncture and saw a nutritionist. I also went on detox trips to clear my body from the drugs. You try anything you think will help you conceive.

I finally became pregnant after nine rounds of ICSI (intra-cytoplasmic sperm injection). This differs from conventional IVF as a single sperm is injected directly into an egg, instead of fertilisation taking place in a dish in which many sperm are placed.

When the doctor called to tell me the news I was over the moon and rang my husband and mum straight away. But an hour later, doubt crept in. I thought they might have called the wrong person. I had a blood test the next day and was told again that I was pregnant. Yet it wasn’t until I called my nutritionist and he shouted to his son, ‘Marta is pregnant!’ that it really sank in.

I had decided years earlier that if I had a daughter I would make a range of shoes and clothes for little girls, so when Lolita arrived in 2011 I was determined to do so. I’ve called it the Marta & Dottir collection. I’m so grateful that my dreams have come true.


‘IVF gave me a heart attack’

Lee Cowden, 37, a teacher from Surrey, had a heart attack after IVF led to ovarian hyperstimulation syndrome (OHSS). She went on to have two children, Molly, now nine, and Ruby, seven.

My husband Iain and I had just returned home from a weekend in Norfolk. That evening I suddenly sat up in bed and said, ‘I can’t breathe.’ I felt a stabbing pain between my shoulder blades and had a strange tingling sensation down my left arm. I was terrified.

I was rushed to intensive care and, the next day, doctors told me I’d had a heart attack. The fertility drugs I was taking had led to OHSS and caused a blood clot in my heart.

I had begun fertility treatment the year Iain and I married. I was 25 at the time and had suffered from polycystic ovary syndrome for ten years.

When the first two cycles of IVF were unsuccessful, doctors doubled my dose of fertility drugs. No one had warned me about OHSS, so I had no idea I was putting myself at risk.

I stayed in hospital for a month and was told that I would have to take warfarin, a blood-thinning drug, for life. My IVF treatment had to be suspended and I was devastated.

A few weeks later, I became breathless and doctors discovered a hole in my heart. They said it had always been there, but the heart attack had made it bigger. After surgery to close the hole I was able to resume my IVF treatment – carefully monitored.

I started ‘ovulation induction’ with Dr Geeta Nargund, using a very low dose of fertility drugs, and had regular scans. The treatment didn’t involve egg collection. When the third cycle didn’t work, we tried mild IVF instead. I spent about £4,000 in total, much less than conventional IVF as we used fewer drugs. Doctors collected my eggs in February 2006 and two weeks later, I found out I was pregnant. I did worry during my pregnancy, but when Molly was born, it was amazing.

Ten months after that, to my surprise, I became pregnant naturally – apparently my first pregnancy had stimulated my ovaries. I was so excited that I immediately bought Molly a T-shirt printed with the words, ‘I’m a big sister!’


If you would like to sign a petition to help end the IVF postcode lottery, where some women are unable to access fertility treatment on the NHS due to where they live, go to petition.parliament.uk/petitions/122809 

*Some names have been changed