It’s all too easy for those not affected to brush off the impact of fertility problems onpeople’s lives, but a new study from Fertility Network UK with Middlesex University London has come up with some bleak figures.
As Susan Seenan, Chief Executive of Fertility Network UK explains, “This survey paints an incredibly stark, distressing picture of what it is like to experience fertility problems in this country. Sadly, in the UK, the inability to have children without medical help means having to face a series of emotional, social and financial hurdles. These include often having to pay crippling amounts of money for your own medical treatment, a lack of affordable, accessible counselling and emotional support, and the deterioration of core relationships. Far more needs to be done to help individuals through the far-reaching devastation fertility issues wreak.”
Key findings include:
90 per cent of respondents reported feeling depressed; 42% suicidal
54% had to pay for some or all of their treatment; 10% spending more than £30,000 (the average was £11,378)
74% said their GP did not provide sufficient information
70% reported some detrimental effect on their relationship with their partner
75% noted the lack of a supportive workplace policy
75% would have liked to have counselling if it was free; only 44% did receive counselling and, of these, over half had to fund some of it themselves
When a story about the World Health Organisation apparently deciding to revise their definition of infertility to include single men and women without fertility problems who wanted to become parents, there was an inevitable media flurry of stories about the NHS having to offer them fertility treatment.
In reality, the chances of this happening in the UK in our current fertility funding climate is very slim. It is already hard for couples with proven fertility problems to access treatment in many parts of the country, let alone those without them. We have seen cuts to fertility services in recent months and fewer and fewer fertility patients are now being offered the treatment that NICE recommends – which is three full cycles of IVF for those who are 39 and under. So the idea that commissioners are going to rush to start offering treatment to single men and women is far from likely…
When you read about fertility problems, it’s nearly always women who are speaking out and telling their stories, but I’ve been really heartened to see that more and more men are opening up about their experiences of fertility tests and treatment. This article by Dan Rookwood in the Evening Standard is a great example.
Dan makes it clear that it isn’t just women who find it difficult when other people announce their pregnancies, that it isn’t just women who feel the disappointment when every period comes, that it isn’t just women who come to dread that question about when they are going to get around to having children… And anyone who has struggled with a diagnosis of unexplained infertility and who has been told that being less stressed might help will know exactly where Dan is coming from when he says that “nothing stresses you out more than someone who can’t give you any definitive answers telling you not to stress out“.
It’s a great article and well worth a read – it’s really important that we start to realise that fertility problems affect men just as much as they affect women.
One small quibble though – Dan says that he and his partner opted to transfer two embryos in order to “double our chances of success“. It is very important to be aware that although it may feel that way in fact putting back two embryos most definitely doesn’t double your chances of success – it just increases your chance of having twins. Dan explains that he and his partner began their treatment in the US, and if that’s where they had their IVF, it would explain this entirely as not all clinics in the States are as concerned as we are here in the UK with reducing multiple pregnancy. Here, a team would usually recommend single embryo transfer for a first IVF cycle if the embryos were good quality. Although we all know twins who are fine, many others are not – and multiple pregnancy is the biggest health risk from IVF, which is why it is so important to choose a fertility clinic which has a good success rate combined with a low multiple rate.
This year’s Fertility Show will take place at London’s Olympia on November 5 and 6. If you haven’t been before, it is certainly worth considering a visit as you will find many of the country’s leading experts under one roof offering a wide range of talks on every aspect of fertility over the two day show. There are also more than 100 exhibitors from clinics around the world as well as advice groups, charities, acupuncturists, diet, nutritional & lifestyle advisors and many others.
You may have heard about recent research suggesting that boys born after ICSI were likely to have lower sperm counts – and you may have been concerned about it. If you were, you may find this commentary from Bionews by Professor Allan Pacey of Sheffield University, who is one of the country’s leading sperm experts, reassuring.
There has always been a question about the future fertility of males born using ICSI, and it had been suggested that they might inherit their fathers’ fertility problems. The latest research has found that the sperm of ICSI-conceived men is of lower quality than average, but when fathers have particularly poor sperm quality this doesn’t seem to be passed on to their sons. You can read Professor Pacey’s interesting commentary on the subject here.
The brilliant NHS Choices also has a commentary on the research behind the headlines, and you can find that here.
I’ve just finished reading Avalanche, novelist Julia Leigh’s book about her experiences of IVF and am filled with a sense of sadness and of anger. Julia was 38 when she first went to a fertility clinic, and the book charts her journey through cycle after cycle of unsuccessful treatment in courageous and painful detail. The reader follows the highs and crashing lows of fertility problems and treatment; the injections, the drugs, the repeated unsuccessful cycles, the low positive pregnancy test, the marriage breakdown…
My overwhelming reaction was anger that she had endured so much because no one had told her the truth about the likelihood of IVF working. Why was she freezing her eggs at the age of 42? Why did her consultant keep telling her that there was a 40% chance of a positive outcome with IVF using her own eggs when she was in her forties? Yes, she may have had a blastocyst, but that doesn’t alter the fact that here in the UK, the chances of success for a woman of her age using her own eggs stand at around 5% – which means a 95% chance that the treatment wouldn’t work. Why did the consultant suggest she should give it one more go with her own eggs after six unsuccessful cycles when she was approaching her 45th birthday? Why didn’t anyone ever mention the risk of miscarriage for women in their mid forties? Her story story raises many questions about women’s choices and about clinician’s responsibilities.
Leigh is based in Australia, where data for individual clinics is collected, but never made public and when she begins researching clinics, she finds it impossible to compare the outcomes at different clinics. It is only at the very end of the book that she dares to asks her doctor bluntly how many women of 44 have conceived using their own eggs at the clinic where she’s having treatment in the last year, and is told that the figure is 2.8%. Some distance away from the 40% chance that had been suggested when she was having the treatment.
What makes me particularly sad about Avalanche is the lack of truth about IVF and who it can – and can’t – help. IVF is a good treatment for fertility problems, and cumulative success rates mean that a majority will conceive after treatment – but the chances of a positive outcome plummet with age. IVF is not a treatment that can reverse the biological clock and it is not a solution for reproductive ageing. If we were more honest and open about this, we could save so much heartache and pain…
As part of Fertility Network UK’s #HiddenFaces campaign for National Fertility Awareness Week they are hoping to make video diaries of personal fertility stories.
If you are happy to tell your story to camera (it should take 30min max) and can travel to Covent Garden, London for filming during the coming weeks, you can email Catherine Hill at firstname.lastname@example.org or call 07469-660845 to find out more about taking part. Fertility Network UK needs your help to make these films!
There has been a lot of debate on the subject of fertility education and whether it would be helpful for young people to know more about their future fertility. Having come across so many people who’ve told me they wished they’d known more and would have made different decisions if they’d realised how rapidly their fertility could decline, I’ve always been very much in favour of more fertility education. It can be part of a more general fertility awareness to ensure young people know more about their bodies than my generation did.
All too often, there are warnings that this might just lead to anxiety for young people who already have enough to worry about which is why this article from the online newsletter Bionews written by a young woman is particularly important. It’s interesting, well-written and worth a read.
Do you live in Dorset, Hampshire, West Sussex, Berkshire or Oxfordshire? Would you be happy to talk on camera about your personal experience of fertility problems? You could help raise awareness by being part of a series of short films to coincide with National Fertility Awareness Week.
The producers would like to hear from: couples who struggled to conceive naturally; couples who struggled to conceive via IVF and couples who have adopted or fostered. Filming will take place mid/late September. Please email Russell Sheath at email@example.com and cc Catherine Hill at firstname.lastname@example.org
If you’re fed up with “helpful” comments, advice and suggestions from friends and family about your fertility problem, you should read this article and consider passing it on to those around you. I thought the list of things NOT to say to someone with fertility problems was excellent – and sadly I’m sure we’ve all heard more than one of them more than once..
Have a look, see what you think – maybe you have some more of your own?