Helping women with reproductive health challenges

Deborah Lancastle_39000How women cope with extremely heavy periods doesn’t make the news. How women feel when they have unusual cells on a smear test is not often written about in magazines. A woman having IVF treatment might want to keep it a secret from colleagues and her employer and book annual leave for treatment to keep it under the radar. Women can feel embarrassed talking openly about menopause and feel that they must hide the emotional and physical struggles that come, hand-in-hand, with changing hormone levels.

The psychological impacts on women with reproductive health challenges is something that Associate Professor Deborah Lancastle has spent many years researching and continues to focus on.

Deborah said: “In my early studies of psychology, I hadn’t even thought about the ‘psychology’ of reproductive health, it wasn't something that had particularly crossed my mind. But hearing those stories really got me interested because they were about women’s lived experiences and I could really see the injustice of women living with such problems ‘just because they were a woman’.”

In her post-doctorate working on a national familial ovarian cancer trial, Deborah investigated the psychological impact of ovarian cancer screening on women.

“Women who are at significantly increased risk of ovarian cancer, due to their family history, could opt for more frequent ovarian screening as part of this trial,” she said.

“The decision to have screening is incredibly meaningful to women. There is a family history of cancer, so the likelihood is that they have lived through at least one family member being ill and maybe dying. Having this test is not something done lightly, and there is a lot of worry about the results and then, of course, the distress that comes with an unwelcome result.”

This is just one of the many scenarios where a woman has to process and manage significant psychological impacts as a result of their reproductive health. When a woman decides she wants to start a family and that doesn’t go as they expected it to, they may seek medical help and might decide to start IVF treatment, which also comes with psychological repercussions.

Deborah said: “There is a part of the IVF treatment process known as the waiting period. This is from the time the fertilised eggs are transferred to the womb and the time a test is taken to identify if the embryo has implanted or not.

“Women report these two weeks as the most stressful time of the process. There is nothing much they can do to help the process – they just have to wait. They go through a wide range of emotions from trying to be optimistic, to being anxious about the outcome, and then very sad if IVF does not work.”

These are stories and situations that Deborah has encountered time and time again during her years researching this topic.

“Women have told me stories of their reproductive health problems and the distress, discomfort, and complete and utter upheaval it brings to their lives,” she said.

“I will never forget a participant in an early study I was involved in, who was overjoyed to be offered surgery to remove her womb. She was not a young woman, and this was major surgery on offer with significant recovery time, but it was preferable to her extremely heavy, menstrual bleeding. During her period, she couldn’t walk round the supermarket without bleeding through her clothes and couldn’t sleep through the night without having to change sanitary protection. She had just had enough.”

Due to her growing expertise in this field, Deborah has been involved in research and events about the psychosocial impact of uterine fibroids on women’s quality of life. Fibroids are benign abnormal growths that can grow inside or outside the uterus. They are made from muscle and tissue and can vary in size.

“Fibroids can be asymptomatic,” she said.

“Many women have them and don't know they've got them. But when they are symptomatic, they can cause dramatic bleeding. Very long, very heavy, uncontrollable, sometimes unexpected, bleeding. Almost torrential for some women. Depending on where the fibroids have grown, they can be pressing on something internally, causing pain or incontinence.

“As you can imagine, this can be debilitating. Women might not know they have a fibroid and are just putting up with the pain and bleeding because they’re not recognising it as a symptom of something going on that can be corrected. They think this is just the way their periods are. They might have seen their mum go through the same and they just think it is normal ‘for them’. Or the bleeding might increase slowly so they're not mindful of the fact it's changed, they just buy more absorbent sanitary protection and get on with things as best they can, but with adjustments, during that time of the month.

“Women with heavy periods can avoid booking holidays or work meetings during their periods, avoid swimming, or ask friends to give their children a lift to school because they can’t go on public transport or far from a bathroom.

“Alongside this, they think it's unworthy of attention. They don't feel that they're sick so they just get on with life. And women are so busy! It might feel like a few days of inconvenience, and then it's over for a few weeks, so it is forgotten about until next month. Years can pass without seeking help – in fact research suggests up to five years.

“Sometimes they get a diagnosis through a routine check-up or there might be a very embarrassing incident of bleeding through clothes which make women sit up and take notice that something is not right.

“This, potentially treatable impact on quality of life is really not ok.”

Deborah’s latest research highlights the importance of women getting to know their own menstrual cycles and being observant of the impact on their quality of life. She developed a brief, accessible tool that women can quickly complete, to keep an eye on their bleeding, track it over time, and note the disruption caused, so that they can use it as a talking point with GPs. This tool (the PERIOD-QOL) has just been published in BMC Women’s Health and she has been cited in the, recently published ‘Period Proud Wales Action Plan’, Welsh Government’s plan to end period poverty and achieve period dignity in Wales.

When asked about her hope for the future in terms of the psychosocial aspects of women’s reproductive health, Deborah said: “I hope that due consideration is given to the fact that women’s reproductive health isn’t just about having babies (or not). The challenges of difficult menstrual cycles, gynaecological disorders, and the menopause can be chronic and cyclical. Women can be at a disadvantage in the workplace, socially, and with their families due to dealing with pain, bleeding, mood shifts, vasomotor symptoms and so on.

“The point of the Period Proud initiative by the Welsh Government is to try and ensure that the necessary provisions and adjustments are in place so women can participate in society to the best of their ability – and that is a very good thing indeed!”