The 8th Repealed: Future directions and lessons for UK politicians

The Irish referendum to repeal the 8^th amendment was a momentous day for abortion politics. Two thirds of Irish voters rejected the idea that a developing foetus had an equal right to life as the pregnant women, thereby sending out a clear signal to their government that the country would no longer tolerate the ban on abortion and the discrimination against pregnant women more generally. Many people believe that the tragic and unnecessary death of Savita Halappanavar added momentum to the campaign. Halappanavar was 31 years old when she died from sepsis developed during a miscarriage, her family reported that she was denied an abortion because there was still a foetal heartbeat. This tragic event, and the accounts of women forced to travel overseas to access an abortion, made it clear that rather than a foetus having an equal right to life, women’s lives were in fact a secondary consideration and this situation could no longer be tolerated.   

Women’s stories were a central part of the campaign. The varied accounts of why abortion was necessary for them at that time, and the lengths that they had to go to obtain one illustrated the importance of abortion to women. The diverse and everyday nature of these accounts, coupled with the overwhelmingly positive result in the referendum have contributed to the growing normalisation of abortion. This process of normalisation positions abortion not as a shameful procedure but as an essential aspect of healthcare which women should be able to access if and when they need it. As such, abortion needs to be safe, legal, local, and accessible within public healthcare systems.

The Irish constitutional ban on abortion meant that the whole population needed to vote on the issue. This unique situation means that globally, politicians will be taking notice of the Irish referendum result, not least those in the UK. Abortion is still a crime across the UK, and the 1861 Offences Against the Person Act (England, Wales and Northern Ireland) sets the penalty as life imprisonment for women and anyone who helps them get an abortion. The 1967 Abortion Act provided exceptions, so abortions that met certain conditions would not be unlawful, but this did not, and still does not apply to Northern Ireland. As a result, it is still virtually impossible to get an abortion in Northern Ireland and women are forced to either travel to the mainland or buy abortion pills online and risk prosecution. This legal position contributes to abortion stigma and acts as a chilling environment for health professionals who work in the shadow of prosecution, even if they are providing good clinical care. 

There has been a long campaign to legislate so women in Northern Ireland can access abortion, and the Irish referendum result has intensified public attention on this matter. Abortion is considered to be a devolved issue, so an area of legislation for the Northern Ireland Assembly rather than Westminster. But at the time of writing, there has been no government in Stormont (home to the Northern Ireland Assembly) for 17 months, and there is little sign that the issues which led to its collapsed will be agreed soon. In addition, the Democratic Unionist Party (DUP) have already said that they would veto legislation which gave access to abortion even if it received a majority vote in the Assembly. This is no idle threat, their ability to block legislation means that the Assembly’s majority vote for equal marriage has never been enacted. Furthermore, those in Westminster who are currently arguing that it is for the Assembly to decide, know full well that this is, by default, a call to continue to prevent abortion services developing in Northern Ireland.  

Alongside the problem of access in Northern Ireland is the continued insistence that abortion is a conscience issue, and that therefore any proposed legislation should come from the back benches in Westminster rather than from the government. On the one hand, this has meant abortion has not become the political football that it has in the United States between the Republicans and the Democrats. However, this only leaves behind a current legal framework with Victorian era punishment which continues to be a barrier to good clinical practice. The 1967 Abortion Act which was written for a time prior to the development of the abortion pill, is no longer fit for purpose and the current legal framework institutionalises a form of paternalistic medicine that is now almost universally rejected.

Access to abortion (at least in some circumstances) has been recognised as a human right. The UK government is responsible for human rights, they are not a devolved issue. Consequently, to pass the buck on responsibility for legislation, either to a non-functioning Assembly or to the back-benches of Parliament is unacceptable. There is overwhelming public support for abortion in the UK, over 90% believe it is necessary in some cases, and nearly 70% that it should be women’s choice. It is about time that politicians recognised that abortion provision is a normal part of women’s healthcare   

Anti-abortion organisations have resources and connections which have often distorted how little public support they have in the UK. The UK government is responsible for human rights, and has repeatedly been censured for failing to provide abortion in Northern Ireland. Whilst it is the case that historically, abortion legislation has always come from the back-benches, part of the normalisation of abortion requires it to be treated as other aspects of healthcare, and in the light of the evidence from Ireland, abortion decriminalisation across the UK should not have to wait on the lottery of private members bills.

Dr Pam Lowe, Senior Lecturer in Sociology, University of Aston

Featured image by Rebecca Strickson Illustration https://www.instagram.com/rebecca_strickson_illustration/

Photos by Pam Lowe

 

(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.

 

 

The Centre for Reproduction Research Turns One!

One year ago today we launched the Centre for Reproduction Research (CRR) and what a year it has been! The last twelve months have been rather packed-full of activity, so we thought what better excuse than our first birthday to share some of our achievements.

In our inaugural year as a Centre, we welcomed several new members and happily, some returning ones. Dr Katie Coveney joined us from Sussex University as full time Research Fellow to work on the EDNA project (more on that below). We were delighted to welcome two new full-time doctoral students, Victoria Crowdell and Sumaira Rashid, working on highly topical projects: respectively, IVF ‘add ons’, and in/fertilities and reproductive ageing in Pakistan.  Dr Douglas Gray returned to CRR after spending some time working for the Human Fertilisation and Embryology Authority (HFEA), re-joining DMU as Senior Lecturer in Biomedical Science; and Dr Zaheera Essat re-joined as Lecturer in Midwifery, following time working in community practice. We are thrilled to see the disciplinary and methodological expertise of the team expand with these new and returning appointments.

In conjunction with the launch of the Centre last April, our ESRC-funded interdisciplinary ‘EDNA’ project (Egg donation in the UK, Belgium and Spain) formally kicked off and data collection is now well underway. The project team presented some preliminary findings at the British Sociological Association (BSA) Annual Medical Sociology Conference and the BSA Deconstructing Donation Conference last year and Katie has set up a dedicated project blog where you can read more about the research as it progresses.  

In partnership with the national charity, Endometriosis UK, members of the team launched an important suite of materials designed to improve care and support for women with endometriosis and their partners. Based on our previous ESRC-funded research, these materials included an educational intervention designed for delivery at support group sessions and two films, one describing the condition and another exploring the impact it has on intimate relationships. Following the launch, Nicky appeared on BBC Radio Four ‘Woman’s Hour’ to raise awareness of the issue and the new resources available.  

Several Centre members have taken up invitations to speak this year, both at home and abroad. Centre Director, Prof Nicky Hudson, was invited by the European Society for Human Reproduction and Embryology to speak on culture, language and ethnicity in infertility care. Dr Cathy Herbrand delivered a lecture at the ‘Techno-Rep’ seminar series in Paris at the School for Advanced Studies in the Social Sciences. Wendy Norton was an invited speaker at the National Women’s Health Nursing Congress in Turkey, and Caroline Law delivered an invited seminar at the ESRC Centre for Population Change in Southampton. Despite technically being retired, Prof Lorraine Culley still managed to squeeze in two keynote addresses at the Fertility Society of Australia Annual Conference where she discussed our work on egg freezing and endometriosis.  

This year has also been busy for our doctoral students. Dr Christina Weis passed her viva in November with her thesis ‘Reproductive migrations: surrogacy workers and stratified reproduction in St Petersberg’ and Paris Connolly began a new role as a part-time FGM community outreach worker at Coventry Haven Women’s Aid. In September, Kriss Fearon and Sasha Loyal presented at the Annual Conference of the Society for Reproductive and Infant Psychology where they shared details of their respective work on Turner Syndrome and reproductive timing in British South Asian communities. Sasha also continued the CRR winning streak at the DMU Annual PhD Poster Competition for research students securing 4th prize for her poster which asked: ‘When is the right time to have a child?’.

In January, we launched this blog – expertly edited and curated by Dr Kylie Baldwin. Our work has also been published in a range of places, including three papers in the Sociology of Health and Illness, covering work on mitochondrial donation, egg freezing, and male infertility. We have received coverage in national newspapers, radio programmes, and online news outlets. Centre members have also presented on their work at a number of international conferences in Denmark, Canada, Portugal and Iraq on topics such as birth and labour, reproductive citizenship and egg donation. 

We’ve been lucky to host some fantastic speakers at our monthly seminar series, including Dr Petra Nordqvist, University of Manchester, Dr Damian Riggs, Flinders University, Prof Liz Peel, Loughborough University, and Jessica Hepburn, author of ‘The Pursuit of Motherhood’. In addition to our packed seminar series (more information about which you can find here), we have also hosted several BSA events including the annual Human Reproduction Study Group Conference (the next one is coming up in May– not to be missed). Kylie and Katie also recently joined the organising committee for the BSA Medical Sociology Conference and are currently undertaking preparations for the 50^th Anniversary event, which will be held at Glasgow Caledonian University between 12^th-14^th September 2018.

In January, eleven members of the Centre attended a productive writing retreat in the Peak District efficiently organised by Caroline and Zara with help from the Centre for Learning and Study Support and Library and Learning Services. Over two and a half days, we progressed several journal articles and book projects, as well as PhD chapters and theses. During breaks from writing we enjoyed yoga sessions, led by our resident yogi, Christina, and stunning walks in the snowy countryside navigated by hiking enthusiast Kylie. We would thoroughly recommend a writing retreat to other groups of academics and researchers and we couldn’t fault the lovely staff, accommodation, and space provided to us by The Nightingale Centre. We are maintaining our writing momentum with our CRR writing group chaired by Dr Helene Mitchell, and we are already planning another trip.

We are looking forward to another busy year ahead and already have some pleasing things to celebrate. We are delighted to announce that former CRR PhD student, Christina, will join the Centre as Research Assistant from this May – covering for Jessica Turner who is currently on maternity leave. We are also very happy to see Dr Esmée Hanna join us from Leeds Beckett University as VC2020 Lecturer. As well as continuing to develop her work on men and in/fertility, Esmée will be teaching on the ‘Health, Wellbeing and Society’ degree programme in the School of Allied Health. A good friend of the CRR after coming to us as a visiting researcher in 2016, Esmée is looking forward to working with Nicky, Cathy and others on their new project on Klinefelter Syndrome.

All in all, we have enjoyed a wonderful first year as a Centre and look forward to progressing new projects, collaborations, and public engagement plans in the coming 12 months. We are always happy to welcome contact with friends new and old, so please do follow our activities on twitter: @CRRDMU, by joining our mailing list via crr@dmu.ac.uk, subscribing to this blog, or maybe even consider joining us for a visit in-person. 

With warm wishes,

The CRR team

 

 

Considering motherhood, ‘Eggistentialism’ and the gendered inequalities of parenting.

The upcoming fertility-fest organised by Jessica Hepburn has the CRR buzzing with excitement, the wide variety of speakers and exhibits on topics which many of us have spent several years researching is a rare treat for us as academics. I was however recently lucky enough to get something of a sneak peek at one of the acts presenting at the festival; the stage play by Joanne Ryan called ‘Eggistentialism’.

Conceived during an ice breaker at a theatre development scheme, and reflecting the thoughts and feelings of many women in their 30s, the play sees Ryan share her ambivalences about the possible role which motherhood may one-day play in her life. Musing on her own reproductive future the play examines the sexual as well as social politics of contemporary motherhood and through the use of an animated slide slow, maps key moments in the history of Ireland between 1916 and 2017. With a focus on the politics of the family, reproduction and sexual relationships, the play examines emotive and distressing topics such as the forcible removal of babies from unmarried mothers, poor access to reproductive and sex education for young people, repressive legal barriers to contraceptive technologies, and the denial of access to safe and legal abortions for tens of thousands of women in Ireland which still continues today.

In the play Ryan draws a comparison between the reproductive and mothering experiences of the older women in her family and herself. In doing so, she notes how the comparatively liberal experiences of her generation who had access to reliable contraception and seemingly egalitarian relationships with intimate partners, has meant that she is now part of the first generation of women for whom the experience of motherhood is not considered a simple inevitability, but a ‘choice’ which she is able, but also required, to make for herself.

The play begins with Ryan waking up on her 35^th birthday with the hangover from hell, the type of hangover which makes you question your life choices, and the decision about whether she wants to become a mother rests firmly at the forefront of her mind. Aware of her advancing age, and fearful that she may not have ‘enough eggs left over to make an omelette’, like many women before her she takes to the internet for advice about her fertility and possibility of motherhood in the future. What results is a particularly funny skit which sees Joanne’s computer screen quickly overrun by alarmist media headlines about fertility decline and older motherhood which cascade before the audiences’ eyes to the rumbling overture of Carl Orff’s Carmina Burana. Finding that the decision about whether or not to become a mother has not yet been made for her by ‘Mother Nature’, Ryan decides to undergo an ovarian reserve test to assess the state of her fertility and is told that she is still within the normal range for a woman of her age. With no moment of clarity provided by the results of these tests, Ryan ponders what her life would look like should she remain childfree. She concludes that she wouldn’t need to have a child in order to experience fulfilment and happiness but remains anxious about the thought of entering old age without building a ‘legacy’ and a family who could care for her should she become unwell or infirm. She also notes how despite growing numbers of women coming to the end of their fertile lives without becoming a mother, the language used to describe such women often remains derogatory (selfish, shallow, bitter, self-absorbed) with connotations of incompleteness and lacking in essential qualities of femininity; such a fact troubles Ryan.

However, Ryan’s personal ambivalence about motherhood appears to centre on what she perceives as the pressures of modern day motherhood, remarking that during her grandmother’s lifetime keeping a child alive, well fed, and warm appeared to be the extent of a woman’s mothering responsibilities. By contrast she notes how contemporary motherhood is characterised by what she describes as an ‘endless triage of difficult decisions a woman is constantly judged for’. Evoking the notion of the ‘mummy wars’, it appears that Ryan’s ambivalence about motherhood is at least in part shaped by her anticipation of engaging in, or being required to engage in, a process of intensive mothering (Hays, 1998; Baldwin, 2017). This expectation of mothering intensively leads Ryan to note how becoming a mother would almost certainly see the end of her much beloved ‘city breaks’ as the demands of motherhood would require not only a complete reorganisation and reorientation of her life, but would also entail a high degree of personal sacrifice and altruism in putting the needs of her child before her own. The perceived demands of motherhood also lead Ryan to worry about ‘losing herself’ in the process of becoming a mother.  Most significantly however Ryan notes how the transition to motherhood would change her life completely as the burdens of raising a child would more than likely fall disproportionately on her shoulders, by comparison she notes that for her partner Rob, it would be ‘business as usual’.

The fear that the burden of parenting, and other associated domestic tasks, would fall disproportionately to her is perhaps not unwarranted given the context in which she makes her decision. After all, it was only in 2016 that men in Ireland were first able to take state mandated paternity leave (with shared parental leave still not available), and whilst maternity leave is accessible for many women, it is often only paid at a statutory rate with employers not required to top up women’s income as seen in England. Ryan also cites statistics which paint a depressing picture of the low rate of Irish men’s involvement in domestic tasks and in the delivery of unpaid care. This leads her to fear that should she and Rob decide to become parents, the egalitarian relationship which they have enjoyed thus far would be disrupted with Rob being applauded for ‘babysitting’ his own child whilst she faces her career being side-lined and independence marginalised. In raising these issues Ryan recognises the deep gendered inequalities parenting can bring to a previously equal intimate relationship which Ryan is perhaps the first in her family to enjoy.

I am not going to spoil the ending of the play for you by divulging what Ryan eventually decides, you will have to attend the Fertility Fest to see for yourself, but I can thoroughly recommend the play as a wonderful mix of both a hilarious stand-up routine and a personal monologue which is emotionally honest, intelligent but also highly engaging and entertaining.

‘Existentialism’ is running at the Bush Theatre on Friday 11^th and Saturday 12^th May, for more details see https://www.fertilityfest.com/ or follow @eggsplay on Twitter.

References

HAYS, S. (1998) The cultural contradictions of motherhood: Yale University Press.

BALDWIN, K. (2017) ‘I suppose I think to myself, that’s the best way to be a mother’: how ideologies of parenthood shape women’s reproductive intentions and their use of social egg freezing.  Sociological Research Online 22 (2), 1-15

 By Dr Kylie Baldwin, Senior Lecturer

The Centre for Reproduction Research Marks Endometriosis Awareness Week

Affecting approximately 2-10% of women of reproductive age, endometriosis can cause debilitating pain, problems with fertility and have a devastating effect on the lives of women with the condition and those around them. As we mark Endometriosis Awareness Week 2018 (3-11 March), we consider how we can continue to raise awareness and improve the care and support of those affected by the condition.

The Centre for Reproduction Research has been studying endometriosis for several years; our work includes the ENDOCUL study, which examines the ways the condition affects women from Black and Minority Ethnic groups and how cultural barriers might prevent women from receiving appropriate care, and our ESRC-funded ENDOPART study. This latter study demonstrated the complex and multifaceted effects the condition can have on not only women, but also partners and couple relationships. In partnership with leading UK charity Endometriosis UK, this research led to the development of couple-focused resources including online information and support (written text and a film) and a support group session. Our current research activity now involves investigating endometriosis specialist nursing and how this can be better developed to meet women’s needs.

If you have not heard of endometriosis you are not alone. Public awareness of the condition is low and many women still suffer for years before getting a diagnosis. The condition occurs when the endometrium – the lining of the uterus – grows outside the uterus, such as in the ovaries, fallopian tubes or elsewhere in the pelvis. It might also grow on the bladder or bowel, or in some cases on other organs such as the liver or lungs. This can cause inflammation and pain, as well as adhesions and cysts. Nobody knows exactly why some women get endometriosis, and there is no definitive cure. Common symptoms include chronic pelvic pain, heavy and painful periods, fatigue, pain during sex and fertility problems. A range of treatments are available to relieve symptoms, including analgesics, hormonal treatments, and surgery. However, these treatments may cause side effects, and are often are only partially effective, or only effective in the short term. As such, finding an effective way of managing and treating the condition is an ongoing battle for many women.

A particularly enigmatic condition, the ‘gold standard’ for diagnosis is via a laparoscopy – keyhole surgery through the abdomen – and many women experience huge delays in getting a diagnosis (our review of research[1] suggests the average delay between symptom onset and diagnosis can range from 5 to 8.9 years). Thinking that their pain is normal, or that they are simply unlucky rather than unwell, women often refrain from visiting their GP or are embarrassed to do so. Furthermore, when women do pursue investigation, whilst some report receiving excellent care, others report having their symptoms trivialised, normalised or dismissed by GPs who have little knowledge of the condition.

A condition of much uncertainty[2], endometriosis also affects all women differently: some women with endometriosis have few or no symptoms, whereas others experience debilitating pain and find that endometriosis affects their ability to work, socialise, and have relationships and children. In addition, the severity of symptoms does not correlate to the stage of the disease (determined by factors as location, extent, and depth of endometriosis). As such, campaigning organisations, healthcare providers and health researchers continue to ask, how can we better improve diagnosis and support for women with endometriosis?

On Wednesday 7 March we hosted a wellbeing seminar ‘Living with Endometriosis: Understanding its Impact and Management’, open to all De Montfort University staff and students. Chaired by our Centre Director, Prof Nicky Hudson, we were honoured to have Cathy Dean, an Endometriosis Clinical Nurse Specialist at The Portland Hospital, London, deliver the seminar, discussing what endometriosis is, signs and symptoms, issues with diagnosis, treatment options, and support and care for women with the condition. Following this Caroline Law, Research Fellow with the Centre, discussed the social impacts the condition can have – particularly on working lives, education and study, and having children. Questions and discussion focused on how women can access effective treatment given the variance in care across the UK, and how the new NICE guidelines Endometriosis: Diagnosis and Management should be implemented in practice – particularly what this will mean for women in terms of accessing both diagnosis and appropriate care.

Great strides have been made in recent years towards increasing awareness of endometriosis. Well-known actors such as Lena Dunham of ‘Girls’ as well as ‘Star Wars’ actor Daisy Ridley have spoken honestly and publicly about their battle with the condition. 2017 also saw our research being showcased on BBC Radio 5 Live and BBC Radio 4 Women’s Hour, as well as the publication of the first endometriosis NICE guidelines on the condition.

Endometriosis UK continue to do outstanding work in supporting those affected by the condition, and advocating for improved diagnosis procedures and better management. Within the Centre we now look forward to pursuing future research opportunities to ultimately help improve the quality of life of women with endometriosis and those around them.

More information about our research can be found here.

Links to resources and patient information provided by Endometriosis UK can also be found here.

[1] Culley, L, Law, C, Hudson, N, Denny, E, Mitchell, H, Baumgarten, M, Raine-Fenning, N (2013) The social and psychological impact of endometriosis on women’s lives: a critical narrative review, Hum Reprod Update, 19, 6, 625-639.

[2] Denny, E (2009) ‘I never know from one day to another how I will feel’: pain and uncertainty in women with endometriosis, Qual Health Res, 19, 7, 985–995.

By Caroline Law, Research Fellow

The Story of An Accidental Infertile by Jessica Hepburn

This month we are launching our Centre blog which will be used to share work, advertise events and most importantly, to generate discussion and dialogue. For our inaugural post, we invited January’s guest speaker Jessica Hepburn, to tell our readers about her experience as a public figure in the world of fertility and what she thinks needs to change to improve things for patients and the public in the future. Jessica is one of the UK’s leading patient voices on infertility and founder of Fertility Fest the world’s first arts festival dedicated to fertility, infertility and the science of making babies.

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Standing at the front of the classroom at the Centre for Reproduction Research in January, I thought how far I had come. Four years ago, almost to the day, my first book The Pursuit of Motherhood had been published and since then my life has changed completely. For years, I had been very secretive about my struggle to conceive. Publicly I was a successful ‘career woman’ (that terrible term that is never used to describe men). I ran a large theatre in London. But privately I was desperately trying to become a mother going through round after round of unsuccessful IVF.

I contemplated bringing my book out under a pseudonym. I knew it was a story that needed to be told, but I wasn’t sure whether I was strong enough to face the stigma and shame associated with infertility. I was going to call myself ‘Jessica Harper’ but then my editor did a Google search and discovered there was someone of that name who had just defrauded Lloyds Bank of millions of pounds. It wasn’t worth the mix up.

So I ‘came out’. I became a public infertile. And it’s been ok, not only because being honest about my own experience has made things better for me and those around me –  because secrecy and shame can be toxic – but also because it’s enabled me to campaign to make a better world for fertility and infertility. And this May my second book will be published: 21 Miles: Swimming in search of the meaning of motherhood. It’s the story of one woman (me!) who ate 21 meals with 21 women and then swam 21 miles to answer the question: does motherhood make you happy? You can watch the trailer here: https://unbound.com/books/21-miles/

My work in the sector has taken a number of forms in addition to writing including being a trustee of the national charity Fertility Network UK, a patient adviser to the Human Fertilisation and Embryology Authority and hosting the Q&A stage of the Fertility Show in London and Manchester. It sometimes bemuses me that the black-sheep of the fertility industry (me again!) is welcomed in these arenas which are dedicated to supporting people to achieve their dreams of a family. But I do think there is more and more recognition that IVF, whilst being a modern miracle, isn’t a magic bullet. It doesn’t work every time for everyone and it’s important that there is better understanding of that as well as the psychological impact of going through treatment. But at the same time the science does offer remarkable routes to parenthood, both for people who are fully fertile (single women, the LGBTQ+ community) and for couples struggling with infertility and sub fertility. And the opportunities that the science might offer for the way the human race is made are developing all the time. We need to talk more as a society about all aspects of human fertility and reproductive science – what it can and cannot do and how people can best make the families they want, with (or without!) children.

In 2016, I brought my two worlds of the arts and fertility together and founded Fertility Fest – the world’s first arts festival dedicated to fertility, infertility, modern families and the science of making babies.  It will be back in May for its second edition at the Bush Theatre in London (8 – 13^th May www.fertilityfest.com). Six days, forty events and 150 artists and fertility experts in a unique programme of events, entertainment, discussion, debate, support and solidarity. I’m delighted that Professor Nicky Hudson from De Montfort University has agreed to be one of our fertility experts in our session ‘The Gift’ which will look at the light and dark sides of egg, sperm and embryo donation.

The festival has three big aims:

• To use the power of the arts to improve the understanding of the emotional journey of the fertility patient in order to ensure better patient care and outcomes;
• To improve the level of public discourse about all aspects of reproductive science;
• To improve fertility education.

I believe that the next generation deserves a more rounded and robust understanding of their fertility. They shouldn’t just be taught how ‘not to get pregnant’ and our project, Modern Families, which launches at the end of February aims to influence the current consultation that is being undertaken into the PSHE curriculum following the introduction of compulsory Relationship and Sex Education in schools – you can read more about it on our website here: https://www.fertilityfest.com/the-modern-families-project.

The festival programme will be exploring things like ‘The Doctor In The Bedroom’ (what it really feels like to conceive through reproductive science); ‘The Invisible Man’ (on the still little discussed issue of the male experience of infertility). We’ll also be looking at the aftermath of unsuccessful treatment in sessions such as  ‘When ART doesn’t work’ as well as parenting after IVF in ‘No Longer Extraordinary’ – because does the experience of struggling to conceive ever leave you? We’ll also be tackling some big societal questions like ‘What Comes First The Career Or The Egg?’, ‘Race, Religion and Reproduction’ and ‘The Future of Fertility.’

And new for this year, we have a series of sessions called ‘Fertility Fight Club’ in which artists and fertility experts will take to the stage to argue for something they want to change about the world of fertility. These sessions will be live-streamed so if you can’t join us in person, you can watch and participate from the comfort of your armchair wherever you are in the world.

But I hope you can join us in person. Tickets are on sale now. The festival is for everyone and anyone and you won’t find another event in the fertility calendar like it. It’s for patients at all stages of their fertility journey. It’s for fertility professionals (scientists, clinicians, and academics). And it’s for people who are just plain curious about the subject and want to learn more. Crucially it’s for people with and without children because we all have a fertility story. I may be an accidental infertile. It’s certainly not something I ever planned for or wanted. But now I’m here let’s talk about it because this is how the human race is being made (and sometimes not being made) today.

www.jessicahepburn.com

http://www.fertilityfest.com