Last night I went to an amazing event organised by the Eve Appeal, a gynaecological cancer research charity, as part of their gynaecological cancer awareness month. The subject was Talking Taboos and the evening aimed to discuss the things we don’t usually discuss, which can be a barrier to seeking advice about symptoms which lead to gynaecological cancers.
It made me think about how many taboos there are about fertility and treatment, and all the things we find difficult to discuss. It is so hard to break down those barriers when you are feeling sad and isolated, but you are really not alone. One in seven of the population experiences problems when they are trying to get pregnant and there are 3.5 million people in the UK who are currently trying unsuccessfully to conceive. Next time you feel alone, remember how many of us there are out there – and how much we can help one another.
Thanks to Stephanie Phillips for starting the first World Childless Week which runs from 11-17 September and aims to raise awareness of the many millions of people around the world who are childless-not-by-choice.
When Stephanie realised that she was not going to be able to have children, she gradually started to link up with others in similar situations through an online group and gradually realised that the peer support she received was making a huge difference to how she felt about her life.
She realised that there was no focus for people who were childless in the Fertility Awareness Weeks in the UK and USA, and needed something that didn’t focus on happy endings after fertility problems but on life without children. That’s why she decided to start World Childless Week. Her aim may have been to help a few people know that they are not alone, but it has done far more than that already and has really helped to raise awareness over the last few days. You can find her website at http://www.worldchildlessweek.com
You may have already seen quite a bit about the week on social media, but I hope that Stephanie’s brilliant awareness-raising idea continues to be a huge success and starts to increase understanding and empathy for those who are childless-not-by-choice. Thank you Stephanie!
Other sources of support for those who are childless-not-by-choice include Jody Day’s Gateway Women and Kelly Da Silva’s the Dovecot
If you are pregnant after fertility problems, there is a brand new closed Facebook group that you can join. It is a closed space to talk to one another, to share experiences and to find news and information about pregnancy, birth and early parenting.
Miscarriage is devastating, and often women find it hard to talk about so the idea of an Instagram account for women to come together to discuss their experiences may sound slightly bizarre – but in fact, many women have found the I Had a Miscarriage Instagram pages very helpful. It was started by a psychologist, Jessica Zucker, in 2015 and already has more than 17 thousand followers. The account has become a space for women to connect, to share their feelings and to read about the experiences of others.
Losing a baby is particularly difficult if you have been through fertility problems and treatment first, and if you have personal experience of this it is always worth getting in touch with the Miscarriage Association who can provide lots of information and support. The Miscarriage Association is currently running the brilliant Simply Say campaign to help other people understand more about what to say when a friend, colleague or family member has experienced a miscarriage.
I’ve just watched this really interesting feature about women from China travelling overseas to freeze their eggs. Apparently, unmarried women are not allowed to access any form of fertility treatment in China, including egg freezing. In fact, women who are married are far less likely to want to freeze eggs anyway, but the restrictions have seen growing numbers of women travelling overseas in order to freeze their eggs.
What’s quite sad about this is that many of the women clearly believe that they have bought themselves time, or some kind of insurance, by freezing their eggs when – as anyone who has been through fertility issues knows only too well – having frozen eggs is no guarantee of anything in the future.
The news of cuts to funding for fertility services has made depressing reading over recent days, with more and more areas cutting IVF in order to save money. As many people realise, cutting funds for IVF is a questionable way to save money in the longer term – you end up with dejected, unhappy people who are far more likely to need medical help for depression and related illnesses (we know from a Fertility Network UK survey that the majority of people with fertility problems have experienced depression and that more than 40% have had suicidal feelings as a result of their fertility problems).
People struggling to fund their own treatment often end up going overseas where IVF can appear cheaper, but where there are not always the same measures in place to reduce the numbers of multiple pregnancies, which is the biggest health risk from IVF. It doesn’t need many sets of prematurely-born triplets conceived after multiple embryo transfers overseas to wipe out any savings from cutting IVF funding here in the UK.
What was more depressing was the reaction to the news about the cuts from some quarters – people with absolutely no understanding or knowledge about infertility who felt the need to try to grab centre stage by offering ill-informed opinions. We all know that not everyone agrees with the NHS funding IVF treatment, but most of those who think this way have the good grace to recognise that infertility is tough and that anyone experiencing it deserves some empathy. Not so one person writing in the Independent who suggested that fertility treatment “only serves to fulfil people’s whimsical obsession with baby-making”, that the NHS should not pay for people to become parents “if they fancy it” and that there is no justification for treatment “just because it will make some people feel more fulfilled in their life”. It was quite breath-taking to read such a glib and insensitive dismissal of a medical problem. Right back to biblical times, the huge impact of infertility has been understood with Rachel, who was unable to get pregnant, crying “Give me children, or else I die”. Infertility is recognised by the World Health Organisation as an illness, and NICE says that IVF is a clinically and cost-effective treatment.
I’m not adding a link to the article in the Independent, or addressing the poorly researched claims as to why we shouldn’t fund IVF one by one. Suffice to say that a few hours after the piece appeared, the person who wrote it tweeted “So I’m about to go on Newsnight. No big deal, right? RIGHT?!?!”… The tweet explained everything about the lack of empathy, understanding or any shred of human kindness in the piece. This article was never meant to be a thoughtful response to a social problem, but was all about trying to create the sort of stir that gets you noticed and on television. It’s just a shame that the media desire for controversy and debate means that ignorance often gets to masquerade as valid opinion.
When you are trying to conceive, it’s inevitable that you want to do all you possibly can to maximise your chances of success and changing your diet seems a fairly easy way of doing something to help. More and more fertility patients are giving up all kinds of foods and focussing on “clean” eating in an attempt to improve outcomes of treatment or to boost their fertility. Eating a healthy, balanced diet is never going to be a bad thing and will, without any doubt, help your overall well-being and make you feel more positive. Giving up whole food groups in the pursuit of clean eating, however, may not have any merit.
It seems that the answer is moderation and common sense – the story of the wellness blogger who began to lose her hair and whose periods stopped at the start of this piece is a clear enough message about the impact very restrictive diets can have on fertility.
I’ve met so many fertility patients who are on hugely restricted diets – and who are actually made quite miserable by their constant battles to keep on the straight and narrow with their eating plans. Fertility treatment is tough enough without making things even harder for yourself. You may end up feeling guilty if you break your own strict rules when in fact it really isn’t going to stop you getting pregnant if you eat something which doesn’t tick all your healthy eating boxes from time to time.
The most important thing is to be kind to yourself during fertility tests and treatment – that doesn’t mean living on a diet of chocolate and red wine, but it does mean remembering what a balanced diet means and following a sensible eating plan rather than something which is going to make you feel unhappy and which may not be providing you with all the nutrients you need.
Did you know that the charity Fertility Network UK now has a special online group meeting every month for those who are pregnant after fertility problems? The group is open to everyone and will have expert speakers from time to time who will can offer tips and advice and answer questions.
Many people feel anxious when they finally discover they are pregnant after some time trying to conceive, and it can be hard to relax and enjoy your pregnancy. Talking to others who really understand how you feel can be hugely beneficial and the group is online so you can join from wherever you are based. Although it is run via Skype, it is just like a conference call rather than a video conference so you don’t need to worry about being seen. You can find the details and information about who to contact to join here
Once again one particular overseas clinic is spamming a fertility forum with endless fake patient posts about how marvellous the clinic is. What’s really sad about this is that it shows so little respect for those going through treatment – the posts are all remarkably similar, all from people raving about the marvellous treatment they’ve had at this particular clinic and all of them full of the same terrible English, peculiar phrases and spellings. Some even seem to forget they are pretending to be a patient half-way through and say things like “Maybe during your vacation you can visit xx and will direct you. Maybe also hangout together” or “Welcome to xx where reproductive health is assured”. Do they really think anyone is going to believe this is a fellow patient sharing their fertility journey?
These fake patient posts are so easy to spot and I hope that this is as counterproductive as it ought to be. A fertility forum should be a safe place where patients can talk to one another, and a clinic which doesn’t respect and understand that is not one you’d want to be spending your money visiting.
If you are having fertility treatment, or have done recently, you may have been offered some additional extras on top of your IVF or ICSI. These additional treatments include things like time-lapse imaging, embryo glue, endometrial scratching or reproductive immunology. Not all clinics offer every type of additional treatment. Some may not suggest them at all, others include them in the price of IVF or you may be given the option to pay for add ons if you would like them.
Fertility Network UK, the patient charity, and the fertility regulator the Human Fertilisation and Embryology Authority, or HFEA, is interested in finding out more about what you think about these add ons, how they should be offered and what you need in order to make decisions about whether to pay for them. Most of these add ons are not fully proven to increase your chance of getting pregnant.
If you have had treatment recently or are going through treatment currently, do take a minute to answer the short questionnaire to help them find out more about what your views are on this subject. You can find the link by clicking here