Avalanche by Julia Leigh

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. Cumulative success rates mean that a majority of women with fertility problems will conceive after IVF. It is not, however, 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…

Avalanche by Julia Leigh is published by Faber & Faber

Have you had fertility treatment overseas?

Cmhc-LqWYAAWk88Fertility Network UK have a media request for anyone who either has had IVF or ICSI overseas or anyone who is actively considering it?

If you are happy to talk to a Radio 4 journalist about this – and it can be done anonymously if you prefer – please email Catherine Hill at media@fertilitynetworkuk.org

Not too late to watch the BBC fertility programme

images-6If you missed it last night, the BBC TV programme on fertility presented by The One Show’s Alex Jones (and yes, it was on quite late!) is available to watch here and the BBC also has a good information page about getting pregnant at 35 plus which has links to some great factsheets on a variety of fertility-related issues from the British Fertility Society and the patient charity Fertility Network UK.

The programme is definitely worth watching – all too often media coverage of fertility is inaccurate or looks at extreme cases, but this managed to be balanced and interesting, covering the subject in a sensitive and empathetic way with lots of sensible advice.

Would you be interested in joining the RCOG Women’s Network?

778a7999The Royal College of Obstetricians & Gynaecologists (RCOG) is recruiting new volunteer lay members to its Women’s Network. The RCOG works to improve health care for women everywhere by setting standards for clinical practice, providing doctors in the specialty with training and lifelong learning and advocating for women’s health.

The College’s Women’s Network is a lay group that advises on and guides the organisation’s involvement of women within its work. The Network meets quarterly as its own committee and leads project work. Members also bring their skills and experience across many of the RCOG’s core committees on work areas such as the curriculum and education of doctors; the development of guidelines and patient information; and patient safety. Membership of the Network is a challenging voluntary commitment but a rewarding opportunity to have real influence to ensure women’s views have a meaningful impact on women’s health outcomes and their experience of services.

Full information can be found at www.rcog.org.uk/patients/rcog-womens-network/apply-to-join-the-rcog-womens-network. The closing date for applications is 2nd October 2016.

Could you join Fertility Network’s video campaign?

Cmhc-LqWYAAWk88As 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 media@fertilitynetworkuk.org or call 07469-660845 to find out more about taking part. Fertility Network UK needs your help to make these films!

When you can’t have another baby…

images-1Secondary infertility – which happens when you are having trouble conceiving after getting pregnant before either naturally or with treatment – is something that is often overlooked. There is often an assumption that you must be able to get pregnant again if you’ve done so in the past – and that once you have a child, you ought to be satisfied with that anyway.

The topic has been covered in the press today, which reminded me that Fertility Network UK do have a special group for parents who are experiencing fertility problems. It can be incredibly helpful to get together with others who are going through similar things, and if you’d like to join the group you can contact the group by emailing secondaryinfertilityuk@gmail.com

Fertility education – a teenager’s view

Sex_educationThere 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.

Media request to help fertility awareness

GeneticcounselingDo 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 russell.sheath@me.com and cc Catherine Hill at media@fertilitynetworkuk.org

Proposed fertility services cuts in St Helens

ivf_science-300x168Yet more proposed cuts to fertility services. St Helens CCG is proposing a two-year suspension of IVF services for people aged under 37 – one way to stop this is to contact your MP.  The MPs for St Helens are:
Marie Rimmer MP marie.rimmer.mp@parliament.uk
Conor McGinn MP conor.mcginn.mp@parliament.uk

If you are comfortable doing so, it is helpful to include details of your personal situation: how fertility struggles affect you physically, emotionally, financially and socially. Not all MPs understand this and it can make a real difference if you explain why cutting IVF can have such a devastating impact.

If you might find it helpful, the charity Fertility Network UK have a draft letter you can use which you can find here – http://infertilitynetworkuk.com/nhs_funding_2.

A “potent” new treatment

images-21Another week, another Daily Mail story about IVF. You may have read this one about a “potent” new fertility treatment that is cheaper and less invasive than IVF and leads to a “50% increase in embryos”.  As usual with these stories about marvellous new advances, it all sounded wonderful and there was little to suggest that it might not be available at a clinic near you tomorrow.

I always read to the bottom of these stories. You usually find a sensible quote from a British expert, often Professor Adam Balen of the British Fertility Society or Professor Allan Pacey of Sheffield University if it’s a story about male fertility. In this case, there was no British expert, just a paragraph from the HFEA about in vitro maturation which wasn’t quite the same thing as the whole point of this “potent” treatment is that it is apparently an addition to in vitro maturation where substances are added to the egg cells to try to improve egg quality.

At the end of this article, a final paragraph explained that researchers are now starting to carry out some safety studies to ensure that adding these substances to the egg cells has no impact on the long-term health of babies – so probably not coming to a clinic near you just yet…