‘Have you ever talked to any women with Turner Syndrome?’ Adapting interviews for women with mild cognitive impairment

This May, after many months of hard work on behalf of the authors and editorial team alike, saw the publication of a special issue of the journal ‘Methodological Innovations’ which we put together based on submissions to the panel ‘Social Studies of Reproduction: techniques, methods and reflexive moments’ which we convened at the International Sociological Association’s 9th International Conference on Social Science Methodology, in September 2016. A full list of the articles, including author names and URLs to the papers can be found at the end of this blog post.

We asked Kristine Fearon (one of our CRR PhD students) if she would like to write a summary of her paper, indeed her first sole author academic publication, to give readers a taste of what they may expect from the special series.

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Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment

Kriss Fearon

https://journals.sagepub.com/doi/full/10.1177/2059799119841933

Qualitative reproduction research very often asks people to share sensitive personal stories and experiences. As a standard part of research practice, researchers are expected to anticipate the potentially upsetting nature of their questions and prepare for the impact this may have on their participants. However, this proactive approach is not always described in research with participants with Turner Syndrome (TS), even though the condition is associated with mild cognitive impairments, some of which may affect the research interview interaction. This blog post, and the paper it is based on in Methodological Innovations, was inspired by the desire to explore how my research approach could be adapted to accommodate the potential needs of my research participants.

My research explored reproductive decision making with women with TS and mothers of girls with TS, who were faced with making choices on their daughter’s behalf. TS is a spontaneous X chromosome disorder associated with a range of symptoms such as short height, infertility, heart conditions and hypertension, cognitive issues such as difficulty with time-management and social cognition, and social anxiety and shyness (Bondy, 2007). It is not a disability, but its symptoms appear on a spectrum so a symptom that is disabling for one woman might only mildly affect another.

As TS and issues related to reproduction are often highly sensitive and personal, I was aware before beginning data collection that this would most likely affect the research approach I would need to take. What was less clear was how some of the symptoms of TS may affect the way the research process and interview interaction was conducted and experienced. Whilst the mothers of the girls with TS did not suffer from the symptoms themselves, I was aware that they may have access needs of their own. Across the wider population, the rate of disability of the women in the age range of the mothers I was likely to interview was 18% (DWP, 2014). As a result, it seemed prudent to prepare suitable adaptations for use by all potential participants and not just those I knew had TS, especially as research indicates that people often feel reluctant or unable to share details of a health condition or disability with new people (ONS, 2014). Furthermore, I was aware that if participants were managing any symptoms without making major changes to their daily life, they may not consider it to be relevant information for an interviewer. This made it more important to discover in advance what might be needed, and plan accordingly.

The first step, then, was to scope the implications. In order to do this, I took advice from people with expertise in TS, who identified relevant issues which may affect some women with the condition and gave suggestions for ways to address them. The issues they identified as potentially important for the interview encounter included working memory impairments; difficulty in interpreting body language and facial expressions; difficulty in decision-making and time management; as well as anxiety. After this, I drew on the principles of Universal Design (UD) as a framework to plan adaptions.

Universal Design (Mace et al, 1998) is a practice originating in architecture which sees disability as being caused by inadequacies in the physical or cultural environment, rather than as something residing within the individual (Barnes, 2011). Applying its guiding principles (such as ‘flexibility’ and ‘low physical effort’) to research meant looking at ways to vary the research setting and interaction to fit individual preferences and needs (Lid, 2014). The choice of research method, photo elicitation interviews, was one important way to achieve this, but adaptions were also made to other aspects of the research approach. This included providing information about consent and photo choice via video as well as in the participant information sheet; leaving the choice of venue to the participant; allowing time for participants to take a break if needed; using words rather than relying on body language and tone to communicate meaning; and allowing more time for the participant to respond to the questions I put to them.

In a photo elicitation interview, participants bring images as a way to start the conversation. Some of the benefits of such an approach to data collection identified by other academic researchers (Allen, 2009; Konecki, 2011; Liebenberg, 2009; Luttrell, 2010) are features that had a double function as suitable adaptions. For example, participants with anxiety may have felt more in control when they had time to plan what to say. The photos were a useful way to help to manage time and bring the focus of the conversation back to the topic at hand. Some participants also used photos to express complex thoughts and feelings that might have been harder to articulate with words alone. Through the use of images, the focus of the discussion was often not the participant but her photos, which allowed time to build rapport during the course of the conversation which was particularly important for participants who were shy or worried about

The participants responded generously to the request to bring photos and ultimately brought twice the number that was expected, including items like a baby book, inspirational quotes, drawings, poems, stories, selfies, and songs. One participant used a painting to express a nuanced view of fertility and family. Her peers had married and had children; she thought she had missed her chance to become a mother and was facing growing old on her own. Using the painting below, she described how, through caring for her dogs, she experienced bereavement and loss, as well as fertility and birth.

Image 1 provided by participant

She explained:

My dog had puppies, so I’ve experienced the cycle of life through that and watched her children grow up. It’s nowhere near having your own children but at least I explored 1% of something about that process. […] I just know it’s always been, it’s like a void that you can’t fill, and I know consciously that a dog can’t fill that particular void.

Another participant brought a photo of herself aged five with her grandmother, which she described reflected her desire to continue her own experience of good mothering down the family line.

Image 2 provided by participant

She commented:

That picture of me and my nan is really special to me because she died some years ago. I think she taught me that grandmothers as well are incredibly influential figures. She was an influential figure in my life anyway, because I could see a lot of her influence in my mum as well, so she, sort of, through the way she mothered my mum, she taught my mum how to be a mum to me. So, she was an amazing lady, she was.

A further participant shared a photo of her five-year-old daughter breastfeeding a doll, copying her mum who was breastfeeding her little brother at the time.

She explained:
Obviously she was just copying me, because I feed our son, but again I thought, you’re probably not going to get to do that, and for her, she sees that as such a natural part of having a baby, because for many it is, but the fact that she won’t get that opportunity just made me feel wow, this moment right now, I can’t speak, because that’s really got to me.
This participant had discovered when she was 12 weeks pregnant that her daughter had TS. While the health aspects of her daughter’s TS were well managed, the participant was still grieving about the infertility diagnosis that would face her child. The times when her daughter displayed what she described as mothering behaviour, such as when playing with dolls, putting a cushion up her dress and pretending to be pregnant, or rocking her baby brother to sleep, made her deeply upset about how difficult it would be for her daughter to have a family. This example shows how much more poignant a photo can be when compared to words alone.

Image 3 provided by participant

It is difficult to be certain whether the adaptions made a difference to participants as the study did not set out to evaluate this. However, some participants had potential access needs which they only disclosed when I arrived or during the interview. One mother of a girl with TS did not mention her hearing impairment until we met, having chosen to be interviewed at home so she could control the level of background noise. A proactive approach to planning adaptions was especially useful here: any participant could make this choice, so she did not need to let me know. Another participant remarked, during her interview, on the importance of accommodating cognitive differences as a way to achieve a good rapport and mutual understanding.

She told me:
“If everybody thought the way a person with Turner Syndrome thinks we’d all get on just fine. The only difficulty is that we all live in a world where people don’t. People don’t have chromosome disorders, and they think about things one way and we think about them a different way. Often, they need to take a different approach.”

For me, such a statement from a participant clearly shows why planning around potential communication and access issues is so important for research interviews.

The aim of making adaptions was to try to treat participants respectfully and in a way that acknowledged and met their needs and preferences. In doing so I wished to make it easier for potential participants to become involved in the study, but also hoped that making adaptions would in turn produce research which better reflected the experience and views of this under-researched group of people. Ultimately, the number and variety of items that the women brought to interview, the lengthy interviews, and the sensitive, personal thoughts and feelings that people were willing to share, suggests that participants felt comfortable enough to express themselves in the interview encounter. This was pleasing as an early career researcher and a good lesson going forwards about how to try and make research participation and involvement as inclusive as possible.

This blog is based on an open-access article ‘Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment, https://doi.org/10.1177/2059799119841933

More details and links to the other papers in this special issue can be found below:

Introduction: Reproduction research: From complexity to methodological innovation

Nicky Hudson, Kylie Baldwin, Cathy Herbrand, Nolwenn Buhler, Irenee Day

https://journals.sagepub.com/doi/full/10.1177/2059799119829427

 

Men on the margins? Reflections on recruiting and engaging men in reproduction research

Caroline Law

https://journals.sagepub.com/doi/full/10.1177/2059799119829425

 

Pregnant with possibility: The importance of visual data in (re)presenting queer women’s experiences of reproduction

Sierra Holland

https://journals.sagepub.com/doi/full/10.1177/2059799119829429

 

The ontology of early labour (and the difficulties of talking about it): Using interview methods to investigate uncertain and gendered concepts

Julie Roberts

https://journals.sagepub.com/doi/full/10.1177/2059799119825594

 

Situational ethics in a feminist ethnography on commercial surrogacy in Russia: Negotiating access and authority when recruiting participants through institutional gatekeepers

Christina Weis

https://journals.sagepub.com/doi/full/10.1177/2059799119831853

References from blog post

Aldridge, J (2007) Picture this: the use of participatory photographic research methods with people with learning disabilities. Disability & Society, 22(1), pp.1-17.

Allen, L (2009) ‘Snapped’: researching the sexual cultures of schools using visual methods. International journal of qualitative studies in education, 22(5), pp.549-561.

Barnes, C (2011) Understanding disability and the importance of design for all. Journal of accessibility and design for all, 1(1), pp.55-80.

Bondy, CA (2007) Care of girls and women with Turner syndrome: a guideline of the Turner Syndrome Study Group. The Journal of Clinical Endocrinology & Metabolism, 92(1), 10-25.

Department for Work and Pensions, National Centre for Social Research, Office for National Statistics. Social and Vital Statistics Division, 2014, Family Resources Survey, 2011-2012, [data collection], UK Data Service, 2nd Edition, Accessed 18 June 2018. SN: 7368, http://doi.org/10.5255/UKDA-SN-7368-2

Konecki, KT (2011) Visual grounded theory: A methodological outline and examples from empirical work. Revija za sociologiju, 41(2), pp.131-160..

Lid, IM (2014) Universal design and disability: An interdisciplinary perspective. Disability and rehabilitation, 36(16), pp.1344-1349.

Liebenberg, L (2009) The visual image as discussion point: Increasing validity in boundary crossing research. Qualitative research, 9(4), pp.441-467.

Luttrell, W (2010). ‘A camera is a big responsibility’: a lens for analysing children’s visual voices. Visual studies, 25(3), pp.224-237

Story, MF, Mueller, JL and Mace, RL (1998) The universal design file: Designing for people of all ages and abilities.

Office for National Statistics. Social Survey Division, 2014, Opinions and Lifestyle Survey, Disability Monitoring Module, July, August, September, November and December, 2012, [data collection], UK Data Service, Accessed 18 June 2018. SN: 7498, http://doi.org/10.5255/UKDA-SN-7498-1

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.

 

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

 

 

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