Fertility Matters | Information, advice and support
Fertility Matters is written by Kate Brian who has been through fertility problems, tests and IVF treatment herself. The website gives reliable information, advice and support to anyone who is having difficulties getting pregnant.
Researchers are looking at patient information currently available about fertility treatment and are keen to talk to anyone who either has had treatment in the past or is thinking about it as an option. The study is called the Empowering Patient Informed Choices (EPIC) study and it is about developing better patient-centred information. The research team wants to know what helps when it comes to making decisions, particularly related to additional treatments.
Earlier this week, I was honoured to chair a moving session at the arts festival Fertility Fest looking at miscarriage. The evening began with four artists with personal experience of miscarriage presenting their work. Julia Bueno, a psychotherapist, read a passage from her new book about miscarriage, The Brink of Being, which is published today. Visual artist Foz Foster talked about the wonderful 76 foot scroll he produced to celebrate the three children he lost through miscarriage. Finally, theatre company Open Sky, writer Lisle Turner and director Claire Coaché, showed a section of their powerful new show Cold about a couple who experience miscarriage.
After the artists had presented their work, we had a discussion session with the National Director of the Miscarriage Association, Ruth Bender Atik, and the Medical Director of Herts and Essex Fertility Clinic, David Ogutu. The discussion raised some fascinating issues, about the reality of experiencing a miscarriage which we so rarely acknowledge, about the taboos around pregnancy loss and the fact that we assume it is somehow a women’s issue. My only regret was that we ran out of time as there were so many more things we could have talked about, and we had a fabulous panel.
If you’ve been affected by miscarriage, I would recommend Julia’s new book – and if you are ever able to see Foz’s work or catch Claire and Lisle’s show, make sure you take the opportunity. Most importantly, do get in touch with the Miscarriage Association who offer both support and information. They have a factsheet written for anyone who has been through a miscarriage after fertility issues, which feel as if it is the cruellest blow. It is sometimes hard to reach out for support, but it really can make all the difference to talk to someone who understands the experience.
You may have heard in the news recently about the latest statistics on IVF success for women in their forties, and seen that Sally Cheshire, Chair of the fertility regulator the Human Fertilisation and Embryology Authority (HFEA), has spoken out about the need for fertility clinics to be more honest and open with patients about their chances of IVF success.
The latest figures show that the number of women in their forties having IVF has doubled since 2004, but only 75 women aged 42 and 43 will get pregnant using their own eggs, and once you reach the age of 44, just two women a year are successful. To put that into context, approaching 11,000 women who were over 40 had IVF in 2017.
Some clinicians say that women are entering into IVF with their eyes open, well aware of the chances of a successful outcome, but you don’t have to talk to many women who have had IVF to know that is often far from the case. When you are longing for a baby, you tend to hear the positives rather than the negatives, and when there’s a 5% chance of success, it’s the 5% you focus on rather than the 95% chance of your treatment not working.
It is difficult as sometimes women feel that although they may be 44 or 45 and know it is unlikely that treatment will work, they still want some kind of closure and need to know they’ve done everything they possibly could.
Sally Cheshire talks in her interview about being approached by clinics at the Fertility Show in Manchester and being given unrealistic suggestions of her chances of having successful IVF treatment. It is vital for clinics to be honest about this – and it doesn’t take much searching to find clinics publishing clinical pregnancy rates for women in their mid-forties which many will see as their chance of having a baby – when in fact, miscarriage rates are high for women of this age and these clinics know only too well that the live birth rate is very different from the clinical pregnancy rate.
You can read more about Sally Cheshire’s interview with the Telegraph here
I’ve written before about the people who sometimes post on fertility chat rooms claiming to be patients who have wonderful success stories from particular clinics. Of course, many people do this genuinely but some are clearly not real patients. It is hugely disappointing that anyone working in this field and seeing the misery that fertility problems can cause would think it might be acceptable to promote their clinics by pretending to be patients, but apparently some do.
This morning I got up to find dozens of comments posted on Fertility Matters from people with a variety of names and with different email addresses, all claiming to have received the same treatment which had resulted in dozens of miracle births against the odds. They were incredibly detailed stories that someone must have spent a considerable amount of time concocting. I deleted the whole lot immediately, but it made me sad that anyone might feel this was a sales method they wanted to use to attract patients.
I hope the fake posts put people off the clinics and professionals who resort to it as it’s often pretty apparent what is going on. There was a fabulous spoof on one of the fertility websites a while ago from someone who had got thoroughly fed up with the endless fake people claiming to have visited a particular clinic – and it’s calling it out like this that helps everyone to see it for what it is.
Make sure you report any dodgy posts you come across online and let’s help to ensure anyone who uses this horrible kind of promotion finds it backfires.
It starts today at the Barbican Centre in London, and if you haven’t checked it out already, do have a look at what’s on offer. There’s a whole range of events spread over a couple of weeks covering all aspects of fertility starting with today’s session on The Queer Family. Many of the sessions are in the evening so if you’re in reach of London, you can choose to go along after work and then there’s an entire Festival Day on May 3.
I’m honoured to be chairing a few of the sessions and having done this at Fertility Fest in the past, I can guarantee that the sessions will be fabulous. It’s incredibly moving to explore the issues raised by fertility through art, and there are some amazing artists taking part this year, joined by experts in the field.
Come along if you can, you won’t regret it! Tickets can be booked through the Barbican here.
I was absolutely delighted to hear from the Miscarriage Association yesterday that they were launching a range of cards for people to send to friends, colleagues or family members who had experienced a miscarriage. It can be so difficult to know what to say when someone has a miscarriage, and sometimes the tendency is to just ignore it entirely if you are worried about saying something wrong or upsetting the person concerned.
In fact, although miscarriage is very common, it can be an incredibly distressing and lonely experience and most people would really welcome some recognition of what they have been through. Ruth Bender-Atik, the national director of the Miscarriage Association said, “Shockingly, greetings card retailers stock a card for almost every important life event, except one. These cards recognise miscarriage, and give words to those friends and loved ones who can’t find them. Losing a pregnancy is heart-breaking and can be very lonely. Close family and friends often don’t know what to say, say the wrong thing, or just say nothing at all. The new cards have been launched to fill that gap. They may even become a treasured memento, the acknowledgement of the briefest of lives.”
The cards have been created for the women and men who go through miscarriage, ectopic or molar pregnancy and the friends, families and colleagues who wish they knew what to say to them. The cards carry thoughtful messages, approved by a panel of women who have been through miscarriage themselves, and the details of the Miscarriage Association inside, putting help and support directly into the hands of the person who needs it the most.
The cards were launched today and are and stocked at PostMark’s London stores and online (https://postmarkonline.co.uk/). They were devised and created by creative agency MRM//McCann.
At last year’s Fertility Fest I was lucky to be in a session with mother and daughter, Anna Furse and Nina Klaff, who gave an amazing performance about their experiences of IVF as a parent and as someone born through IVF. It was incredibly moving, and I was delighted to hear that Anna and Nina will be back performing at this year’s Fertility Fest at the Barbican where they will be joined in discussion afterwards with Channel Four News Health and Social Care Correspondent, Victoria MacDonald and Ann Daniels, a polar explorer and mother of IVF triplets.
The performance takes place on Friday 26 April at 7pm and you can book tickets here
Completely off-topic of anything fertility-related, but could any of you help with a research project for an art student?
It’s Sonder, a project about the lives of strangers. The student asks you to think of someone you have something to tell, and anonymously leave a voicemail for them on 07514806822. You can say something mundane, meaningful, practical, confessional. be bitter, apologetic, excited, informative – whatever you like. If you want to hide your phone number you can dial 141 07514806822
Sonder will never know who you’re telling, and they will never know you’re telling sonder.
It’s one of the most difficult times of the year for anyone trying to conceive, and it’s here again. A day focused on celebrating motherhood is bound to be challenging for anyone who is longing for a family, and it’s virtually impossible to escape when every local shop seems to have jumped on the commercial bandwagon. Mother’s Day can act as a horrible reinforcement of the sense of isolation and loneliness that you may feel as more and more of those around you seem to be pregnant or new parents. It can make you feel like an outsider whose life has become cut off form those around you.
If you know anyone else who is experiencing difficulties getting pregnant or who doesn’t have children, this can be the ideal time for meeting up with them. Getting together for a day out, a trip to the cinema or sharing a meal can be a good way of reminding yourself that you are not alone. There are around 3.5 million people in the UK alone who are going through difficulties at any given time, and every one of them will be experiencing very similar feelings about Mother’s Day.
It’s important to be kind to yourself today. Why not buy yourself some flowers? Or even better, if there’s something slightly indulgent you’ve been thinking you’d rather like for some time then today is the day to treat yourself for a change.
Don’t forget it’s a challenging day for other reasons too. For anyone who no longer has their own mother around, or those who may be estranged for some reason, Mother’s Day is also a reminder of what you don’t have. If you are fortunate enough to have your own mother around, try to enjoy being a daughter this Mother’s Day too.
Yesterday in London while a million people joined the People’s March, there was another smaller march going on to raise awareness of endometriosis.
The aim of EndoMarch 2019 was to help to publicise tthe need for faster diagnosis, greater education and more funds for research into better treatments and an eventual cure. Marches in other cities and across the world will be taking place next weekend.
There are around 1.5 million women living with endometriosis in the UK, and it can cause painful or heavy periods, exhaustion and bladder and bowel problems. Endometriosis doesn’t always affect fertility, but around half of women with endometriosis experience difficulty conceiving and it is a common cause of fertility problems. It’s a condition where cells which are similar to the womb lining are found in other parts of the body.
Women with endometriosis are not always getting a diagnosis when they visit a doctor with symptoms, and research suggests that it takes on average seven to eight years to be diagnosed. During this time, women are often suffering in silence, uncertain of the cause of their problems.
Endometriosis one of the subjects up for discussion at the Fertility Forum in London on March 30. Ertan Saridogan is a fertility expert with a special interest in endometriosis and he will be explaining how endometriosis affects your fertility. He will cover all the options for treatment and how to choose between them.
The Fertility Forum is a non-commercial evidence-based day which has been organised by patients and all the professional bodies in the field working together, and aims to help those who have been trying to make sense of the overwhelming mass of information on offer. It takes place at the Royal College of Obstetricians and Gynaecologists and is open to anyone who wants to know more about their fertility.