It was great to be at the launch of Fertility Fest 2018 this morning, the fertility arts festival organised by Jessica Hepburn and Gabby Vautier-Farr. We were treated to inspiring words from Jessica and Gabby and an exciting extract of the sort of thing we can expect to enjoy during the festival. You can see the line-up for this year’s festival on the website – www.fertilityfest.com and you can buy tickets now too. I’m already really excited about this year’s festival – there are some amazing artists and expert and fascinating discussions. Make sure you get a ticket before they all sell out – and I hope to see you there!
I know I’ve written about this before, but it is so sad to see that things haven’t changed at all with some fertility clinics creating fake patients to advertise their services online. Let’s be clear, this isn’t just a made-up quote about how marvellous their services are, it is multiple fake profiles on each fertility forum with fake people talking about their “experiences” of infertility. They often post regularly before they mention the clinic, so have other people talking to them and expressing their support. Until of course, they suddenly mention that surrogacy appears to be the solution and that they have a very good friend who went to xxx clinic and now has four children.
I can’t imagine anyone ever deciding to go to a clinic which has to resort to paying people to pretend to be experiencing fertility problems – and which clearly doesn’t even pay enough to employ anyone who can actually write in English. The posts are littered with weirdnesses – “Many couples suggested me this clinic and they are very helping and experience. I suggest you to not waste your time and go a head for surrogacy process its very safe and sound” or “Stop trying with complications just try this. Clinic in Ukraine provides complete facilities.”
Anyone who reads posts on any fertility forum regularly will know exactly what I’m talking about – and will be familiar with the names of the clinics concerned. I suppose they must be under the impression that all publicity is good publicity – but being well known for having such scant regard for the emotional experience of infertility that you think it’s fine to employ people to pretend to be experiencing fertility problems isn’t the sort of publicity any clinic ought to be seeking.
These fake posts take up time for the forum administrators and facilitators who are constantly deleting and reporting fake profiles which seem to appear by the dozen daily. This is time which could be spent helping to refer people to good sources of support and offering advice and guidance.
The one small upside to all this is that the genuine people posting are very aware of the fake people and there have been some fabulously funny posts from real people about the unreal ones. And I suppose we can be reassured that this advertising backfires spectacularly – no one is ever going to opt for the “very helping and experience” clinic which “provides complete facilities“.
If you haven’t seen the final episode of Hannah and Lewis Vaughan-Jones’ video diary of their IVF journey, you can find it here on YouTube. It made me cry, and I think Hannah and Lewis are incredibly brave to have been so open about their experiences – not only is it heartening to anyone going through fertility problems themselves, it’s also hugely helpful to friends, families and colleagues to give them an insight into the reality of treatment. All too often people dismiss infertility as some kind of selfish 21st century indulgence – mostly, of course, those who’ve managed to conceive without any trouble themselves. By being so honest, Hannah and Lewis have given a vivid illustration of the very real pain and suffering that is all too familiar to the one in seven of us who have personal experience of fertility problems.
So thank you to Hannah and Lewis for doing this and for telling your story on behalf of us all. It is not an easy path to take, but perhaps there is some solace in knowing how much you have helped so many other people – and very best wishes for the future.
If you’re having fertility treatment, you may worry that using frozen embryos might reduce your chances of a successful pregnancy. Now, new research from Australia and Vietnam has found that your chances of getting pregnant are similar whether you use fresh or frozen embryos.
The researchers explained that previous studies have shown that for women who have PCOS, frozen embryo transfer leads to an increased chance of success so this research was focused on women who don’t have PCOS, and it found no difference in outcomes. The bottom line is that frozen embryo transfer can lead to the same success rates, and that putting back one embryo at a time is not only the safest way to have IVF, but will not reduce your chances of having a baby either.
The research is published in The New England Journal of Medicine, and you can read more details here and there’s an article on the subject with quotes from the researchers Dr Lan Vuong, from the University of Medicine and Pharmacy at Ho Chi Minh City, and Professor Ben Mol, from the University of Adelaide, here
A research team from Cardiff University are are looking for people who have either not been able to have as many children as they would have liked, or who have not been able to have children at all, to take part in a survey about adjusting to this. They hope that the findings can be used to help with support for those who have not been able to have the family they had envisaged.
This study has ethical approval from the Ethics Committee of the School of Psychology at Cardiff University. It takes 25 minutes to complete the survey, and if you want to enter your email address at the end you can be put into a draw to win one of four £50 vouchers. Here’s a link to the survey if you are interested https://cardiffunipsych.eu.qualtrics.com/jfe/form/SV_73WpnrBsh3laWVf
I’ve just been reading about an overseas clinic which claims an IVF success rate of more than 90% per IVF cycle started, including frozen embryo transfers. I could understand why this would seem an incredibly attractive prospect to anyone who needs fertility treatment – not only is IVF cheaper than it would be in the UK, it also appears to be far more successful. But is it? Does any clinic really have a success rate of 90%?
One of the main differences for the apparent discrepancies between outcomes at clinics here in the UK and the rates some overseas clinics claim is the way that they are presented. Here in the UK, you can check validated IVF outcomes on the HFEA website. These are accurate figures for live births over a set period. Some of the amazing rates you see on overseas clinic websites are not for live births but for positive pregnancy tests, and as we know that one in four pregnancies ends in miscarriage, it is not surprising that live birth rates are always lower than pregnancy rates.
The figures you get from the HFEA will also show you the outcomes for women of different ages. Birth rates after IVF in the UK range from 2% to 33% depending on the woman’s age. The HFEA figures show you outcomes over a set period – a specific year, or a three-year period. If you are running a clinic elsewhere and happen to have a month where you have very good outcomes and lots of women get pregnant, followed by a month where no one does, what’s stopping you from using your good month as your “success rate”? So a success rate may be for a short period, for younger women and it may be pregnancy rather than live birth – and all of these things make a huge difference. What’s more, sometimes the figures are simply wrong. I’ve read some crazy claims for totally impossible success rates, particularly for older women using their own eggs. The truth is that IVF is less successful as we get older, and miscarriage presents a greater risk.
Many overseas clinics offer very good fertility services, but if you are thinking about treatment abroad do be careful about hyped figures and unrealistic claims about outcomes. Know what is likely and what is possible, and be wary of clinic websites claiming successes which are totally out of kilter with anything you’ve ever seen elsewhere, especially for successes for older women using their own eggs, as this may suggest a clinic which is prepared to be somewhat economical with the truth.
We know that around one in every hundred women under the age of 40 will experience what is known as premature ovarian insufficiency (POI), which is sometimes known as premature menopause. POI is actually a more accurate description as the condition isn’t exactly the same as a menopause women go through at the usual age of around 51 because it isn’t always final as hormones can fluctuate. It can happen to women who are still in their teens. If you are over forty but under 45 and go through the menopause, this is usually known as early menopause rather than POI.
The Daisy Network offers information and support to anyone experiencing POI and aims to provide a support network where members can share experiences. The Network also helps to raise awareness of the condition. You may be interested in this story from Grazia by a woman who shares her experiences.
If you’re fed up with people DOING things for January – whether it’s Dry January, joining a spin class or taking up tap dancing – you may like to read Lesley Pyne’s latest blog post. I’ve known Lesley for a long time and have witnessed her building up her support network to help other people who are experiencing involuntary childlessness – she offers lots of support and inspiration for anyone living without children, and has helped many people through their own difficult times. You can sign up for regular emails from Lesley which offer tips and advice. What’s more, she’s right about January and people doing things – it can be exhausting to be faced with other people’s bouncy enthusiasm when you’re just trying to get through things yourself.
I didn’t make any new year’s resolutions this year – I’ve come to the conclusion that if you try to give things up, you just feel more focused on them and have a sense of being deprived when you can’t have them. And when you don’t feel you HAVE to go to the gym or go running, it can make exercise seem much more attractive. I know it may be my strange logic, but it works for me…
New research has found huge discrepancies in the prices people are charged for IVF and for many extras such as blood tests or drugs as reported here in the Times. It can be difficult if you need treatment as you don’t always feel you have time to shop around – but this shows that it is at least worth making a few calls to see whether anywhere closer to you may offer treatment at a lower price. If you do this though, you do need to make sure that the price isn’t lower because not everything is included in the cost you are being given or because the treatment is not the same. It is also important to be aware that the headline costs on clinic websites often have little to do with the real costs that you will end up paying as a patient.
It’s not just the treatment itself where costs can differ but also the prices paid for any additional treatments which some patients are now considering. When I was looked into this, I was surprised at how big the differences were in the charges for add ons. For example, some clinics were including embryo glue in the cost of an IVF cycle whilst others were charging for it and the costs ranged from £75 to £350. It was a similar picture with endometrial scratch, which you might be able to get free at some clinics across the country by taking part in a clinical trial or which could cost you up to £450. I looked at a small sample of clinics and even in those, found these wide price discrepancies but it does show that it is worth at the very least asking why your clinic is charging what it does if it is much more than others.
Finally, don’t forget that the cost is one part of the equation. If you are having to travel a long distance to the clinic – or if it is overseas – this in itself adds costs both financial and in terms of stress. You will also want to check out the clinic details on the HFEA website to see the latest outcomes from treatment and to see how it is ranked by inspectors and other patients. There is a section in the patient ratings about cost which is particularly relevant as it shows whether people ended up paying more than they expected for treatment at that particular clinic so make sure you have at least considered these things before committing yourself.
Happy New Year everyone – and welcome to 2018. I hope it is a successful and happy year for you all, and that you can strike a balance between doing all you can to help yourself with your fertility problems and making life start to be difficult and miserable.
It may sound odd, but anyone trying to conceive is keen to do all that they can to make a difference to the outcome of treatment and there are many things you can do which are entirely sensible and likely to be beneficial – eating healthily, taking exercise, trying to take care of yourself as much as you can. What is not so likely to be beneficial is making strict rules for yourself which are incredibly difficult to follow and leaving yourself feeling constantly guilty if you don’t quite meet the mark – and then blaming yourself for your fertility problems. I’ve seen so many people recently who are following strict dietary rules and other guidance from therapists and complementary practitioners which can make life start to feel like a military exercise – and it really can start to become counterproductive if it is making you stressed. The truth is that being overweight, eating unhealthily and drinking too much alcohol can affect your fertility, but an occasional glass of wine or piece of chocolate is really not going to ruin your chances of fertility treatment working.
So for 2018, be kind to yourself – try to be as healthy as you can, but don’t forget to think about what makes you happy too!