If you are based in or near London, you may be interested to know about a very special parents and babies group taking place on Wednesday lunchtime at the Bush Theatre as part of the amazing Fertility Fest. The Life and Lunch meeting is just for IVF parents and babies and is an opportunity to discuss candidly and confidentially, how it feels to become a parent after you’ve struggled to conceive. It is being facilitated by Saskia Boujo, Founder of My Beehive and creator of the ‘IVF and Proud’ merchandise brand; Helen Davies, author of More Love To Give about her story of secondary infertility; and Gabby Vautier, Co-Director of Fertility Fest and mum of IVF toddler twins.
One discussion theme which comes up now and again on fertility websites and forums is whether to put back one embryo or two when you are having IVF, and there are always people advising others to “go for two” because it will double the chances of getting pregnant if you “don’t mind” having twins. For anyone who is struggling to conceive, the idea of twins can seem hugely attractive – an instant family in one go – but it’s important to be clear that multiple pregnancy is the biggest risk from IVF treatment for you and for your baby.
The best advice to anyone who is thinking about this as a dilemma is that you should be guided by the embryologists at your clinic, assuming you are having treatment here in the UK where your health and that of your babies is always put first when it comes to numbers of embryos to transfer. Most women should have one embryo put back, and two are only considered if you have had repeated unsuccessful attempts at IVF in the past, if you are older or if your embryos look less likely to implant. Putting two embryos back will not double your chances of getting pregnant. In fact, when single embryo transfer is based on your embryologist’s advice, it should not reduce your chances of getting pregnant and if you would have got pregnant with twins, you will still get pregnant with one embryo. A multiple pregnancy is more likely to end in miscarriage but this is not always considered when people are making decisions about how many embryos to transfer.
Although we all know lots of twins who are flourishing and healthy, we don’t hear so much about those who aren’t. The increased risk of miscarriage, and of problems for the babies who are more likely to be born prematurely and may have disabilities or long term problems is very real. There are also risks for the mother such as high blood pressure and pre eclampsia and haemorrhage. You can read more about this here on the HFEA website.
This is why the best fertility clinics – those who really have your interests at heart – have a good success rate and a low multiple pregnancy rate.
If you’re having fertility treatment in the UK, or if you have done in the last year, have you given feedback on your experiences at the clinic? The body which regulates fertility clinics in the UK, the Human Fertilisation and Embryology Authority (HFEA), is keen for patients to give their clinic a rating which you can do here on their website. This feedback is anonymous, and is used to give the clinic a patient rating on the HFEA website so that anyone considering having treatment at the clinic will know what other patients think about it.
You can also add any particular comments or views which are seen by the inspection team who go into the clinic to check how well it is working. This is incredibly important as it helps give inspectors a view of how the clinic is doing from a patient perspective and allows them to look into any particular areas of concern – or to notice where a clinic is doing particularly well.
If everyone took a few minutes to rate their clinic after having treatment it would help promote best practice and ensure that more fertility patients are cared for by compassionate staff, feel involved in discussions about how to progress their treatment and receive exceptional emotional support. So, there’s nothing to lose and everything to gain – if you haven’t done it already, here’s the link again to give feedback on your clinic.
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
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.
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.
Since 2009, the Lister Fertility Clinic has been offering a small number of free IVF cycles each year to try to help people who are unable to access NHS-funded fertility treatment. The cycles are offered in conjunction with the charity Fertility Network UK and there are some criteria for entering into the draw for the free cycles.
You have to be a UK resident under the age of 42, with a cause for your fertility problems. Your BMI must be in the normal range and you can’t have any children from your current relationship. You can’t have been sterilised in the past and you can’t have had a free cycle at the Lister before. There are also some restrictions on the type of treatment you can have, which can’t include egg donation.
You need to send your entry to Fertility Network UK – and you can find the details here
Another short survey – apparently this one has just five questions – and it is looking at how you feel about your personal data being used in fertility research.
The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.
Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an examplehere), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future). Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.
The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en
If you have five minutes, would you be able to complete a quick survey to help with the design of a study looking at women’s long term health after fertility treatment. The purpose of this survey is to learn about your views and health concerns regarding Assisted Reproductive Technology (ART) which covers all forms of IVF/ICIS.
To date, little research has examined women’s health after fertility treatment. University College London is designing a study to monitor women’s long term health after ART and your opinion, views and concerns will help them to design and develop a study, taking into account women’s specific concerns about this topic. This survey is open to all women, whether or not they have had fertility treatment so you can share it with other people. It is anonymous and you can find it by clicking on the link – https://www.surveymonkey.co.uk/r/QY26FR7
TV presenters Hannah and Lewis Vaughan Jones have been charting their fertility journey on YouTube – if you haven’t already seen it, you can find the episodes of their IVF story starting here. If you’ve been through it yourself, you will understand how incredibly courageous it is to decide to go public with each stage of the IVF process – and as their cycle progresses, this becomes ever more apparent. Yet, it is only by telling our stories and by revealing the raw emotion that other people will begin to understand how devastating and all-consuming infertility can be.
Thanks to Hannah and to Lewis on behalf of the one in seven of the population who know exactly what it’s like. When you are already in the public eye, it is even more of a challenge to be so open about something so deeply personal and we are with them every step of the way and thank them for their courage.