Women are sharing their own experiences of miscarriage on social media following new research suggesting one in six women who lose a baby in early pregnancy experiences long-term symptoms of post-traumatic stress disorder (PTSD).
The study, by Imperial College London and KU Leuven in Belgium and published in the American Journal of Obstetrics and Gynecology, looked into the psychological impact of early-stage pregnancy loss on more than 650 women.
Each of the participants had suffered an early miscarriage (defined as pregnancy loss before 12 weeks), or an ectopic pregnancy (where an embryo starts to grow outside the womb and is not viable).
The women, who attended three London hospitals completed questionnaires about their feelings over the course of a year.
The results revealed that that one month after pregnancy loss 29% suffered from symptoms of PTSD.
One month following their loss, almost a quarter (24%) had symptoms of anxiety and 11% of depression.
This reduced to 17% and 6% after nine months, the study found.
Women need more sensitive and specific care after a miscarriage or ectopic pregnancy, researchers say.
As a result of the findings, the team behind the research are calling for improvements in the care women receive following an early-stage pregnancy loss.
And the urgent need for change is reflected in the stories and experiences shared by women using the, now trending, hashtag #miscarriage.
‘For too long, women have not received the care they need following a miscarriage’
Pleased it’s finally being looked at
Angry it’s taken so long
Sad to see my experiences reflected back
Comforted to see my experiences reflected back.#miscarriage https://t.co/EJBEMALrJ9
— Faye Dawson (@FayeDawsonPR) January 15, 2020
Faye Dawson is just one of the thousands who tweeted her gratitude that a light was finally being shone on the subject of miscarriage and has shared further details about her own experiences with Yahoo UK.
“Miscarriage, sadly, is extremely common - 1 in 4 pregnancies end in miscarriage - and yet so few talk about their experiences,” she tells us.
“Talking about it (whether it be with a partner, family, friends, children, professionals, colleagues) should be a choice but I believe that we have been encouraged to keep it quiet and so the choice is removed.”
Faye believes there is a culture of silence surrounding the topic of baby loss with women urged not to reveal details about their pregnancy until the three month “safety” mark.
“Why is that even A Thing?” she says. “We need to have the freedom of choice to express our feelings because it's an absolute fact of life that being able to do so is beneficial to mental health and mental health is, fundamentally, physical health - it's being human, it's being able to function in a positive way or manage negativities; it's the very soul of us.”
She goes on to say that the results revealed in the study touched on her own experiences of miscarriage.
“Reactions like 'it wasn't yet a 'real' baby', 'don't you think it just wasn't meant to be', a doctor saying scathingly, 'what do you want? Time off work?' work logging it as a 'migraine', meant I didn't feel at all justified in my grief,” she explains.
Faye now hopes to see changes in terms of the treatment/care women and families receive after miscarriage.
“Hopefully there will be a bit more care and guidance, an idea of what you might expect to happen; an understanding you might need to take some time out; an understanding that there is shock, physical pain and grief; an offer of help from professionals; an understanding it's tough on partners and families too,” she says.
One of the reasons Faye believes it is so vital to open up the discussion about the psychological implications of losing a baby is to do with representation and the impact this has on wellbeing.
“Representation is all important,” she explains. “If we can see our own experiences reflected back at us we feel less alone, more empowered to talk which ultimately will help others. When those without the experience are a little more knowledgeable they too can feel more comfortable in their approach.”
I’m sure it comes as no surprise - esp. to us women who’ve been through it - that #miscarriage can lead to #PTSD / #anxiety / #depression.
But it’s helpful to have it backed up by science...and will hopefully lead to better #mentalhealth support 🤞https://t.co/r8wfz1GuBX
— Just Another Miscarriage (@JustMiscarriage) January 15, 2020
Carly, who writes a blog Just Another Miscarriage about her personal experience of the subject, also headed to Twitter to give her thoughts on the research.
“This study validates what women who've been through the experience of miscarriage or ectopic pregnancy already know – that it can have deep, long-lasting effects that can really change you,” she tells Yahoo UK.
“I've often felt that my grief isn't justified, that I'm being self-indulgent in my sadness, or am reacting too strongly to something that is common. But for a respected journal to publish a study saying that the trauma of miscarriage or ectopic pregnancy is real and valid is a powerful thing.”
Carly had two miscarriages and one failed pregnancy of unknown location (suspected ectopic) in the space of 11 months and says she found accessing psychological support really difficult.
“I was definitely depressed, for a significant time afterwards, and also suffering with anxiety. But all I could do was join the (very long) waiting list for counselling (in my local authority at the time, the waiting list was around 6 months long). I was lucky enough to receive excellent support from a bereavement nurse at my local hospital, but what I really needed was ongoing, structured therapy and this just wasn't available.”
She now hopes the new research will bring about changes in the after care of those who have suffered from baby loss.
“It's so important that support is available to women and their partners, if needed, from the point at which the miscarriage takes place until they feel they no longer need it,” she says.
“Ultimately, if there's more discussion about the potential psychological impact of miscarriage, the stigma may be reduced and women may feel more inclined to seek out support if they need it. And – assuming the help they need is there – that can only be a good thing.”
Agreed that it will be of no surprise to many. After 15 years supporting the bereaved after early pregnancy loss, my anecdotes of women - and their partners - suffering serious mental health problems stack up to a huge pile. Here's hoping resourcing take note! https://t.co/qj71oRnsyW
— Julia Bueno (@JBueno_UKCP) January 15, 2020
Another woman who joined the #miscarriage discussion following the study results is Julia Bueno.
The psychotherapist has written a book ‘The brink of being: Talking about miscarriage’ collating her experiences of supporting women who have been through miscarriage and pregnancy loss.
While the findings come as no surprise, she hopes that it will lead to urgent changes.
“This study highlights what many practitioners working in the field of pregnancy loss already know - ie that the bereaved after miscarriage may suffer clinically recognisable mental health problems alongside their grief such as anxiety, depression and trauma,” she tells Yahoo UK.
“These merit professional treatment and I hope that the study persuades decision-making around resourcing for psychological support in pregnancy loss services, as there is an urgent need for this.”
Indeed the study authors themselves recommend that women who have miscarried are screened to find out who is most at risk of psychological problems.
Counselling and support will help many women, but those with symptoms of PTSD need specific treatment if they are going to recover, the researchers suggest.
The treatment can range from cognitive behavioural therapy (CBT) to medication.
New research finds that miscarriage & ectopic pregnancy may trigger long-term post-traumatic stress, anxiety & depression, calling for immediate improvements in the care women receive after early-stage pregnancy loss.
Read more, including our response: https://t.co/e1TmL63BUv
— Miscarriage Association (@MiscarriageA) January 15, 2020
“This is such an important piece of research, providing a sound evidence base for what we hear time and again from those whose pregnancies end in miscarriage or ectopic pregnancy,” says Ruth Bender Atik, National Director of the Miscarriage Association.
“We know from our work that miscarriage and ectopic pregnancy can be deeply distressing: the shock of diagnosis, the physical experience of pain and bleeding, and the feelings of sadness, grief and loss for the baby that should have been. Difficult and distressing as they are, those feelings generally ease over time.
“What this research shows clearly is that for some people – perhaps more than we recognise – miscarriage or ectopic pregnancy can seriously impact their mental health.
“It highlights the need for good supportive care for anyone facing pregnancy loss. But most importantly, it is a clear call for our NHS to ensure better access to psychological services for those who need additional mental health care and support.”