Social egg freezing: balancing hope and hype

The topic of social egg freezing once again hit the headlines last week (8th August) with the release of a statement from the Royal College of Obstetricians and Gynaecologists (RCOG) which called for caution over the technology and greater recognition of its limitations. Drawing on my research on this topic, I was pleased to provide various comments on this statement live on Sky News, Radio Four, and BBC News throughout the day.

Dr Kylie Baldwin live on Sky News (08/08/2018)

The statement from the RCOG came following the release of two papers published in the British Journal of Obstetrics and Gynaecology on social egg freezing, and offered guidance and advice to women who are considering freezing their eggs. This advice is much overdue and is the first to come from an official UK body in almost 10 years (Cutting et al, 2009). The lack of such easily accessible advice thus far is surprising, if not concerning, not only because the numbers of egg freezing cycles being performed has risen by over 400% in the last eight years (HFEA, 2018), but also because several authors have raised questions about the quality and limitations of the reporting of the technology on clinic websites as well as in the popular media (Avraham et al, 2014; Mayes et al 2017; Wilkinson et al 2017).

In their statement the RCOG recognised the potential of egg vitrification in enabling women to have children later on in life, but also provided a warranted word of warning to women considering freezing their eggs noting the high cost of the technology and low rates of success. Research shows that women are currently on average 37 years of age at the time of freezing their eggs, and in 2016 less than a third of the egg freezing cycles performed were done with women aged 35 years or below (HFEA, 2018). This is significant given that a woman’s age the time of undergoing the procedure and the number of eggs frozen are recognised as the most important predictors of a future live birth (Doyle et al, 2016). Offering further comment from the RCOG, Adam Balen Professor of Reproductive Medicine, suggested that women who are considering the procedure should freeze their eggs as early as their 20s and certainly before the current average age of 37. However, women are only able to store frozen eggs for 10 years unless they can prove that they have become prematurely infertile in which case an extension to the storage period can be obtained up to 55 years. As I have described elsewhere this means that if a woman freezes eggs at 28 years of age she must use them by the time she is 38 or they will be destroyed leaving her without a fertility ‘back up’ plan right when she may need it the most. It is for this reason why myself and colleagues have launched a campaign to see the storage time limit extended.

Echoing other professional guidelines, the RCOG noted how clinics have a responsibility to provide women with a realistic idea of the likelihood of a live birth with their eggs relevant to their age at time of freezing. However, my research interviewing users of this technology found that women struggled to elicit age-specific and clinic-specific success rates about their chance of a future live birth and instead had to rely on limited published data from other centres that often did not reflect, or were not specific to, their age at time of freezing. This is most likely because unlike the success rates of IVF treatment which are published on the HFEA website, it is much more difficult to obtain success rates of IVF using previously frozen eggs as currently only small numbers of women have returned to use their eggs to attempt conception. This lack of clear data about their chance of a future live birth was troubling for some of my participants, yet women often suggested that by undergoing the procedure they would always be improving their chance of motherhood in the future. However, the problem facing these women as well as prospective users of egg freezing now, is that it is difficult to estimate to what extent they will be improving their chances. I suggest that a vague notion that egg freezing may increase the chance of a live birth in the future could lead a woman to spend the £5,000 plus required to freeze eggs. However, if the same woman was provided a more evidenced-based estimate that the chance of success may only be 5-15% she may feel under less pressure to undergo the procedure ‘just in case’ due to the low rate of success she may encounter. This is significant as my research found that a fear of future regret, of not making use of the technology and suffering unwanted childlessness in the future, was a key factor motivating many women to engage with the technology. Thus, if women are provided with information which clearly articulates the limitations of egg freezing they may feel under less pressure to engage with the technology and may feel less blame and guilt about their non-motherhood status both in the present as well as the future.

Whilst the RCOG provided some useful information to prospective users of egg freezing it was not able to offer insights in to what it is like to undergo the procedure. As such we were pleased to learn that on the same day of the release of the RCOG statement a paper by myself and Professor Lorraine Culley examining women’s experiences of social egg freezing was accepted for publication in the journal ‘Human Fertility’. In this paper we discuss how the process of egg freezing poses a different set of challenges for women compared to those experienced by individuals undergoing IVF to conceive. In particular, the women in our research often reported feeling lonely and isolated when undergoing the procedure, in part due to the fact that they were doing so without a partner. They also described a degree of stigma and embarrassment about making use of egg freezing and for ‘still being single’ at a stage in the lifecourse when normative expectations often included marriage and motherhood (Becker, 1997). As such, in many cases the most challenging aspect of undergoing the procedure for our participants was doing so alone and at a time where they would have preferred to have been pursuing motherhood naturally with a partner.

The participants in our research were generally satisfied with the care they received from the clinic, however they believed that clinics could improve their support of women undergoing egg freezing. This included by ensuring better awareness among clinic staff that women might be at the clinic to freeze eggs and not to attempt conception; by providing more time in consultations for women attending alone; and by displaying greater sensitivity and understanding of the reasons behind women’s use of egg freezing.

Our upcoming paper will reiterate the comments made by the RCOG and suggests that to ensure egg freezing is not oversold as a way to ‘stop the biological clock’ it is imperative that women are given as much individualised information as possible about the likelihood of having a live birth with frozen eggs or at the very least, are clearly informed of the limitations of current evidence. Furthermore, we suggest that it is important to make clear to all women, men and couples that the postponement of childbearing always lowers the chances of becoming a parent, even if they have access to IVF, and that IVF and ICSI have limitations and risks as does pregnancy in later life (Bewley et al, 2005)

By Dr Kylie Baldwin

References

AVRAHAM, S., MACHTINGER, R., CAHAN, T., SOKOLOV, A., RACOWSKY, C. AND SEIDMAN, D.S., (2014) What is the quality of information on social oocyte cryopreservation provided by websites of Society for Assisted Reproductive Technology member fertility clinics?. Fertility and Sterility, 101(1), pp.222-226.

CUTTING, R. et al. (2009) Human oocyte cryopreservation: evidence for practice. Human Fertility, 12 (3), pp. 125-136.

MAYES, C., WILLIAMS, J. AND LIPWORTH, W., (2017) Conflicted hope: social egg freezing and clinical conflicts of interest. Health Sociology Review, 27(1), pp.45-59.

WILKINSON, J., VAIL, A., & ROBERTS, S. A. (2017). Direct-to-consumer advertising of success rates for medically assisted reproduction: a review of national clinic websites. BMJ open, 7(1), e012218.

Human Fertilisation and Embryology Authority (2018) Fertility Treatment 2014-2015 Trends and figures. HFEA Available at https://www.hfea.gov.uk/media/2563/hfea-fertility-trends-and-figures-2017-v2.pdf Accessed 14/08/2018

DOYLE, J.O., RICHTER, K.S., LIM, J., STILLMAN, R.J., GRAHAM, J.R. AND TUCKER, M.J., (2016) Successful elective and medically indicated oocyte vitrification and warming for autologous in vitro fertilization, with predicted birth probabilities for fertility preservation according to number of cryopreserved oocytes and age at retrieval. Fertility and Sterility, 105(2), pp.459-466.

BECKER, G. (1997). Disrupted lives: How people create meaning in a chaotic world. Univ of California Press.

BEWLEY ET AL (2005) Which career first? The most secure age for childbearing remains 20 – 35. British Medical Journal, 17, pp. 588-589.

 

(In)fertility, parenthood and the fertility fight club: a review of Fertility Fest 2018

Last week saw dozens of researchers, scientists, artists, fertility patients, regulators, and campaigners come together for ‘Fertility Fest 2018’ which was organised by Jessica Hepburn and Gabby Vautier. The week-long programme of events brought together 150 artists and fertility experts for the second arts festival of its kind which was dedicated to the discussion of fertility, infertility, modern families and the science of making babies. Unable to attend the festival in its entirety I arrived at the Bush Theatre on Friday 11th to enjoy the packed schedule provided. The morning session offered parallel streams examining the personal experience of using fertility medicine to conceive (The Doctor in the Bedroom), the often-marginalised male experience of infertility (The Invisible Man), and the embodied experience of infertility and reproductive loss (Fertility and the Body). This latter stream included a performance lecture from Shantel Ehrenberg, an academic and performer from the University of Surrey. Ehrenberg’s work titled ‘(In)fertile Territories’ explored her personal experience of becoming childless by circumstance following a diagnosis of sub-fertility with a high Follicle Stimulating Hormone (FSH) at the age of 32. Over the very gentle hum and echo of an ultrasound, Ehrenberg’s piece explored the embodied experience of an uncertain and unexpected fertility diagnosis and examined how the ‘hard and objective data’ mined from her body in the form of fertility assessments contrasted with her ‘soft subjective body’ which nevertheless longed-for motherhood. Drawing on scholarly academic work from across the social sciences, Ehrenberg echoed the concerns and anguish of many other women who experience infertility including a sense of loss and failure. She described how her expectations of future motherhood were shattered through the pelvic ultrasound images provided to her by her fertility doctor who explained her poor chance of genetic motherhood due to her compromised ovarian function. In noting a contradiction between her own personal desires for motherhood and her biological reality, she described how the result of her fertility tests indicated to her ‘what kind of woman’ her body told her she was, or would be; one without children of her own. For Ehrenberg, like many women who suffer from premature menopause, her diagnosis resulted in what she described as a ‘tectonic shift’ in her internalised self-identity and threw her preconceived ideas about how her life would unfold in to a state of flux. Drawing on the academic work of Sarah Franklin and Gayle Letherby, she described how this feeling was made particularly acute by a culture which continues to equate motherhood with womanhood. Furthermore, she noted how the failures of her body served to set her apart from glowing media images of pregnant women such as Demi-More, Beyonce, and Princess Diana who embodied hegemonic ideals of femininity in way which was now outside of her reach. As well as situating her embodied experience of infertility alongside socio-anthropological academic literature, Ehrenberg also shared these through a series of powerful bodily movements which appeared to reflect a sense of powerlessness, a loss of control and which connoted ideas of the empty-armed non-mother who housed a disobedient body unwilling or unable to produce the expected and anticipated gift of motherhood.

Dr Shantel Ehrenberg during her performance lecture ‘(In)fertile Territories’

In the afternoon I attended the stream on ‘The Business of Fertility’. This session questioned whether the ‘fertility industry’ at large was doing enough to support and meet the needs of IVF patients and customers especially as they profited from, what another speaker referred to as, the ‘emotional, physical and financial torture’ of infertility. Sharing two scenes from her upcoming play ‘Genesis Inc.’, the writer Jemma Kennedy quickly and convincingly showed the tension and negative impact IVF treatment can have on intimate relationships and highlighted the often-gendered burden of IVF treatment on men and women. Kennedy also shared her own experience of ‘social’ egg freezing, a technology which she drew upon to preserve her reproductive potential following the breakdown of her relationship. She commented that the intensity of her broken relationship and anxieties about the future meant that she spent several thousand pounds on a technology that is only likely to provide her a 5% chance of future pregnancy. As she underwent the procedure alone, without a partner, and during a distressing phase in her life, Kennedy commented that she did not ask the requisite questions about the technology to enable her to be sufficiently informed about how likely it would be in providing her a live birth in the future. She described how, at the time, it did not occur to her to ask her clinic if they had experience in achieving a live birth from frozen eggs, or how many eggs she may produce following stimulation, and how many she would need to have a realistic chance of motherhood in the future. She commented that she therefore believed counselling to be important not only for women and couples attempting a conception immediately, but also for those making use of technologies such as egg freezing. Kennedy’s assertion about the importance of counselling for users of egg freezing is without a doubt correct and, as our research on egg freezing has shown, she is not alone in the ambivalent and uncertain experience and relationship she had with egg freezing nor the uncertainty she shared about whether the technology will ever help her to realise motherhood. Echoing the findings of our research on this topic, Kennedy explained that even if she had known that her frozen eggs would only give her a further 5% chance of motherhood she would still most likely have gone ahead with the procedure. This was in-part because she wanted to know she had, in some way, increased her chances of motherhood in the future even if only by a fraction. Nevertheless, as authors have argued elsewhere, much more information and transparency is needed with regards to individual women’s likelihood of success using frozen eggs to conceive, as well as how many rounds of stimulation and retrieval she may require to undergo to collect a sufficient number of eggs for freezing.

Jemma Kennedy talking about her stage play and experience of egg freezing

Whilst all the sessions I attended at the festival were thought provoking and engaging, I particularly enjoyed the play ‘Eggistentialism’ by Joanne Ryan which was on in the evening (a review of which can be found here), and the ‘Fertility Fight Club’ part of the day. For the un-inducted, the Fertility Fight Club ran on the Friday, Saturday and Sunday, each time with different contributors who were passionate about the topic of which they spoke. Each speaker had a ‘round’ of 10 minutes to get a particular issue ‘off their chest’ and convey to the audience the key information they wanted them to know and understand. Friday’s session began with Joyce Harper who talked passionately about IVF ‘add-ons’ and asked patients: ‘Why are you paying for unproven fertility treatments?’. Similar to another talk I recently attended at the fertility show in Manchester delivered by Kate Brian, Harper began by discussing the hierarchy of evidence noting how many treatment ‘add-ons’ have not been proven to be effective in randomised control trials which she described as the best and most reliable form of evidence. Sharing details of the traffic light system she helped implement she implored fertility patients to ask for evidence for any treatment ‘add on’ they are offered. Harper’s talk was, as always, lively and engaging however questions remain about how we even define a fertility treatment ‘add-on’. Should we, for example, consider treatments such as acupuncture and reflexology as fertility treatment ‘add-ons’ especially given the rate that these treatments are often taken up by fertility patients? And would providers of these treatments, like the providers of more high-tech ‘add-ons’, be able to substantiate any claims they make about increasing the success rates of IVF.

Prof Joyce Harper in the first ’round’ of the ‘Fertility Fight Club’

The second round of the fight club heard from Sheridan Voysey who after being diagnosed with male factor infertility underwent repeated rounds of unsuccessful IVF treatment with his wife and who after 10 years of trying to create a family had to relinquish his desire for fatherhood. Voysey, who documented his experience coming to terms with unwanted childlessness in his book ‘Resurrection year’, shared the perils of ‘coming out’ as an infertile couple or person in the public eye. He described how he personally became the target of online abuse and often had his experience of infertility and unwanted childlessness dismissed by unkind readers who repeatedly berated him to ‘just adopt’. He noted how the process of adoption was by no means simple and had also not resulted in him and his partner becoming parents. Voysey also described other hurtful and highly gendered comments he received including readers telling him to ‘man-up’ about his infertility thereby trivialising his experience of unwanted childlessness and further devaluing the pain he felt as a childless man. Voysey therefore wanted people who were struggling to conceive to have their feelings of disappointment and loss validated and not diminished by the suggestion that an infertile couple or person should ‘just adopt’. Instead he suggested that well-meaning individuals could instead ask a couple struggling to conceive ‘whether adoption could be a possibility’ for them, whilst remembering that the process of adoption is not easy and does not guarantee parenthood.

The third speaker was Dr Zeynep Gurtin from the London Women’s Clinic who spoke about social egg freezing. Echoing the findings of our research on egg freezing, Gurtin described how users of this technology were not seeking out the technology to deliberately postpone or delay motherhood. Instead she described how women’s use of this technology was shaped by their lack of a suitable partner. Furthermore, Gurtin articulated how women felt significant fear and pressure to find a partner to have a child as they entered the final years of their fertility. Such a finding reflects that from our research recently reported in The Conversation. Here we detailed how women sought to freeze eggs so not to engage in what we have termed ‘panic partnering’ that is, entering into a relationship with a partner they would not have otherwise chosen, simply to prevent unwanted childlessness in the future.

The final speaker was the theatre director and IVF mother Sarah Esdaile, who gave a passionate and rousing talk about how ‘mother is a verb’. Esdaile became a mother following egg donation and described how she had received negative comments from others asking her about the ‘real’ mother of her daughter. She described how motherhood is not about conceiving, carrying, or birthing genetically related offspring but is found in the love and care a person provides to an often very much wanted child. Similar to Jemma Kennedy in the earlier session, Esdaile underlined the importance of counselling for those undergoing IVF, and described how the sessions she had with her counsellor helped prepare her for the birth of her much wanted and treasured daughter.

Kylie Baldwin

The play ‘Genesis Inc.’ featuring Harry Enfield is running at the Hampstead Theatre between the 22^nd and the 28^th July.