Secrets of IVF: high rate of failure and heavy toll on mental health
‘We have made the decision that if it doesn’t work this time we are going to stop’
Ruth and her fiance had been trying for a baby for about two years before they started IVF when she was 34. File photograph: Getty Images
The day Ruth drove her car up to Howth harbour in Co Dublin and contemplated driving off the side, she realised it was time to stop preparing for a third cycle of in vitro fertilisation (IVF).
“I figured nothing was worth that and I stopped taking it,” she says of the medication she had been prescribed to suppress her immune system and that had caused upsetting side effects. Two previous IVF cycles using different protocols had failed.
When she had blood tests for auto-immune problems, “it turned out that my body was attacking my thyroid and also my ovaries, that is the reason my [egg] count was so low for my age,” explains the 37-year-old, who asks that her full name not be used to protect her privacy.
“It was frustrating to find out at that stage, as it obviously meant that the two rounds that we had wasted 16 grand on would never have worked anyway because my body would have attacked anything.”
Ruth wants to share her experience because she believes not enough attention is paid to the impact of infertility treatment on people’s mental health.
Nothing was done when she told them that she was feeling suicidal
“There was no support for what I was going through and the mental effects it was having on me,” she says. “The doctor used the words at the time, ‘this might make you into a bit of a psycho’ and laughed, which is all well and good when you are not the person going through it. I had some scary moments.”
Nothing was done when she told them that she was feeling suicidal and more depressed than she had ever felt in her life. Having to put yourself in the hands of fertility clinics is a “horrible situation” from the start, she says.
“It’s quite degrading, quite humiliating and on top of everything else your mind is not right because they are pumping you full of hormones. So you are going through the hardest thing you’ve ever gone through without the capacity for being logical. They kind of don’t tell you that.”
Ruth and her finance had been trying for a baby for about two years before they started IVF when she was 34. She has become disillusioned by what she feels is the fertility industry’s lack of regard for the psychological wellbeing of people going through what’s a gruelling process.
“You have a lot of people in the ‘hope’ business. They are selling hope. It’s like it’s never over . . . It’s ‘try this’ and ‘try that’. I just think there could maybe be some more emphasis on acceptance.”
For every wonderful story you hear, there are more with no happy ending and that is not talked about, she says.
“I think people who are peddling hope have to take some responsibility when the hope they are selling doesn’t work. That is where I am a little angry. I have seen through the system and seen its flaws.”
Ruth’s endocrinologist did suggest she go for counselling, but when she rang up the recommended person, she was told it would cost €220 an hour.
“Considering what we have been spending, I can’t really afford to pay €220 for the slight chance that it might make me feel a bit better.”
A childless future
Will and Joanne De Korte, who are trying to come to terms with a childless future after two failed rounds of IVF, also think clinics should not end their involvement with couples when the process fails. With the amount of money IVF costs, counselling sessions should be included in the whole IVF treatment plan, says Will, who has written about IVF on his blog, The Cook’s Belly.
However, going for counselling didn’t even occur to them because all their focus was on the IVF. “But I think it would have been nice to have had it suggested by our GP or by the clinic, so the option would have been there.”
Will recalls a “horrible” four-week wait between “a quick phone call to say the transfer didn’t work” until a review meeting with the doctor to find out what happened.
It can be a very lonely place and knowing there are other couples just like us struggling would help a lot
He agrees there is a need for support groups for couples like them, “as no one can really understand what you have been through unless they have been through it themselves. It can be a very lonely place and knowing there are other couples just like us struggling would help a lot.”
Unsuccessful fertility treatment is stressful and clinics should always have the utmost concern for the psychological wellbeing of its patients, says Dr John Waterstone, president of the Irish Fertility Society and medical director of the Waterstone Clinic.
“The onus is on the clinicians to provide all the facts so the person can make an informed choice on any proposed treatment and not be led by ‘false hope’.”
The counsellor’s view
All Irish fertility centres have counsellors available but “whether the degree of such psychological support is sufficient, it is difficult for me to say”, he continues. However, at his own clinic, that operates in Cork, Dublin, Limerick and Waterford, they offer a complimentary service with a professional counsellor who is available to all couples experiencing emotional stress and they encourage people to use it.
Psychotherapist Margaret Dunne, who specialises in psychosexual, fertility and relationship therapy at her south Dublin practice, sees how infertility treatment can completely take over the lives of couples.
Now there is always another option to try and it can become almost addictive, like gambling
When she started out in this field more than 20 years ago, at the Hari clinic in the Rotunda, the end of the line was after three failed rounds of IVF. While the advances in knowledge and technology in assisted reproduction since then are “fantastic”, now there is always another option to try and it can become almost addictive, like gambling.
“There is a sense that ‘this is going to be the lucky one, this is the one that is going to work’. They are putting money into it, it doesn’t work out and then they are devastated. But there is always the lure of other clinics, in other places.”
She believes clinics don’t encourage people to take enough time out between treatments to stand back and ask themselves how much more are they going to do. Despite the advances there are still no guarantees – even the very healthy and the very wealthy can’t always make it happen.
It’s like a rollercoaster, “they go up, up, up, with tremendous hope that a treatment will work and when it fails they go way down. To deal with that going down, they book themselves in for the next cycle.
“They don’t give themselves time to grieve or sit with the loss before moving on to the next one. Unfortunately, that takes its toll and catches up on people. Men would often use the phrase to me, ‘I lost her to the treatment’.”
She thinks it is very important for people to set a cut-off point for themselves. Many more are going on for donor programmes who had never envisaged doing that.
Two people don’t come to the realisation at the same time that maybe IVF is not going to be successful
It is offered so quickly now yet it is not for everyone, warns Dunne, and can have huge emotional effects. Clinics have their own agenda, she says, but it might not be what’s right for the couple.
“It takes a lot of courage to stop because people are always saying, ‘why didn’t you try that?’ Or ‘why don’t you try this?’.”
Two people don’t come to the realisation at the same time that maybe IVF is not going to be successful, says Dunne. It tends to take women longer. “They find it very difficult to let go of that dream.”
She encourages clients who are trying to come to terms with the idea of never having a baby to take time out and take stock of what might give them fulfilment in life. “I am not talking about throwing themselves into work – it is doing something more creative if they possibly can.”
She quotes the late psychiatrist and psychotherapist Michael Corry on acceptance being a prerequisite for change. “If they have the view that their happiness depends on having a child,” she adds, “they are going to be very unhappy. So they need to change that way of thinking.”
After abandoning preparation for a third IVF cycle, Ruth thought she and her fiance were going to put it all behind them. But after a year’s break and more research, they decided to try again, at a different clinic and using donor eggs.
Although she feels like she is in a science fiction movie – knowing that some young woman in the Czech Republic has gone through the harvesting of eggs, which have been mixed with Ruth’s partner’s sperm – at least she didn’t have to put her own body through that part of the process again.
There were also the odds of success to consider. She was told latterly they only had a 6 per cent chance of conceiving if she tried to use her own eggs, while with donor eggs it would be 60 per cent.
They got three embryos from the donor cycle but two weeks before transfer was due last August, it was discovered Ruth’s thyroid had gone from being underactive to being “ridiculously overactive” and it had to be cancelled.
The couple hope to go ahead with the embryo transfer soon, having already spent about €15,000 on this phase.
But Ruth has very little hope that it will be successful.
“I have lost a lot of faith in the whole medical industry. The way I feel about it now is that I have to get it over with and get on with the rest of my life.
“I feel I am standing in exactly the same place as I started but I am four years older. There’s nothing to show for it but a thicker waist line and more madness.
He has been fantastic but at the same time I sometimes wonder wasn’t he so unlucky to meet me?
“We have made the decision that if it doesn’t work this time we are going to stop. We just need to get back to living our lives – whether that’s together or not together I don’t know.”
Infertility treatment is very tough on relationships. “You go through a lot of guilt. He has been fantastic but at the same time I sometimes wonder wasn’t he so unlucky to meet me?”
Although they have been engaged for some years they haven’t got around to planning the wedding. Sometimes she wonders if she should get married. “Should I just let him go? Is it fair to tie somebody down if they want to be a parent?”
She even occasionally questions the point of being with somebody if you can’t have a family – “you might as well as be on your own”.
Ruth has started thinking about what is she going to do with her life if there’s no children – “mad stuff, like going off to India to be a yoga teacher”.
She knows she is going to have to focus all her energy and time into something, “otherwise I am going to go mad. I certainly couldn’t keep doing and living the life that I am now. It is all geared up to bringing up a family and if you don’t have that, it’s just depressing.”
The only mandatory counselling the couple received was on how to tell children they had been conceived using donor eggs
More honesty and support along the way would, she believes, have made this journey a little easier. While she acknowledges they were offered some counselling by the first clinic at the outset, she didn’t think she needed it then.
After that, the only mandatory counselling the couple received was on how to tell children they had been conceived using donor eggs, which they felt was very previous and just a box-ticking exercise.
Ruth doesn’t believe she can be alone in experiencing mental health problems during infertility treatment.
“I think there needs to be some acknowledgement on their behalf that this stuff messes with your mind,” she adds, “and some kind of help.”
For contact details of specialised counsellors see fertilitycounsellors.ie.
When people have nothing to show for multiple attempts at assisted reproduction but broken dreams and an overdraft, they need support to get on with the rest of their lives.
For some it will come from within the couple relationship, for others from family and friends but many would benefit from professional counselling and/or support groups.
Helen Browne co-founded the National Infertility Support and Information Group (NISIG) in 1996 when she was in the throes of treatment. She was “in a very bad place” after a second round of IVF failed and she went for counselling.
But within five minutes of the first appointment, she knew she wanted to meet people who were going through the same as her rather than talking to someone who really didn’t have a clue.
While Browne says NISIG is quite happy to put people who have decided to stop trying for a baby in touch with each other, there isn’t demand for such a dedicated group.
Having undergone seven rounds of IVF without success herself, she says she noticed how friends and family embrace miscarriage, much more so than unsuccessful treatments.
“To me, I did have embryos inside me that were never acknowledged. It wasn’t that I was looking for sympathy, it’s empathy you’re looking for – to understand your pain. That’s so important.”
Her advice is to go for counselling and she mentions Nurture, a charity that supports mental health around reproduction issues. It offers low-cost counselling to women, with or without their partners.
“They do need counselling but the problem is a lot of them can’t afford it because it’s too expensive,” says Irene Lowry, chief executive of Nurture, which offers it at a subsidised rate of €40 an hour.
What are the odds?
IVF units often quote their “success” rates in confusing ways, which are designed to exaggerate apparent success, says Dr John Waterstone, president of the Irish Fertility Society, which represents professionals working in reproductive medicine.
Unlike the UK and the US, Ireland does not have a mandatory and transparent system for reporting success rates for individual IVF units.
They should at least identify any unit whose success rates are extremely poor
The most honest measure of success ought to be the live birth rate per treatment because many women who have a positive pregnancy test following IVF do not go on to have a baby, he points out.
“I know that my views on this matter are not shared by many colleagues but it is hard not to admit that a mandatory system for reporting success in Irish IVF units would be an advantage for prospective patients wishing to choose a clinic to attend,” says Dr Waterstone, who is medical director of the Waterstone Clinic. “Although success can sometimes be misleading, they should at least identify any unit whose success rates are extremely poor.”
In general, he says, the chance of IVF success is very much dependent on the age of the female partner. The chance that one completed IVF cycle will produce a baby declines from 45-50 per cent for those under age 35, to 20-25 per cent at age 40. Beyond age 42, the chance of a baby per cycle is very little more than 5 per cent.
The chance of success with donor eggs should be at least 50 per cent in a competent egg donation unit, he adds, because the eggs concerned are coming from young donors who tend to be no older than 32.