Just relax…

For anyone with any experience at all of fertility problems, there’s a general understanding that probably the worst thing someone can say to you is “just relax…”, and yet this is the advice a TV doctor gave on ITV’s Lorraine programme. Dr Hilary Jones apparently said to a caller who was asking for advice after three unsuccessful rounds of IVF;  “What I would say is, and this is probably the hardest thing to do, is just relax about it. There have been so many people that I’ve known who’ve gone through several rounds of IVF and nothing happens. And when they’ve given up, and gotten on with their lives, it miraculously happens naturally… Sometimes stress itself can have a very negative effect. So try living your life as normally as you can.”

I suppose this just shows why you should stick to asking fertility specialists for advice rather than a TV doctor, but there has been an understandable backlash from fertility patients and the charity Fertility Network UK. There is certainly a lesson to be learned for TV producers about the risks of getting a GP, who is by nature a generalist rather than a specialist, to offer advice to those who have already been treated by experts in any field of medicine. But should any doctor, even if they are a GP rather than a specialist, be telling people to “just relax” or suggesting that stress might be to blame for infertility? Apart from anything else, we all know that fertility problems cause huge amounts of stress – and that telling someone who is trying to conceive to “just relax” is about as helpful as telling them to get a dog, go on holiday or any of the other helpful advice that non-experts in the field like to pass on.

There is another problem here though, and that’s to do with blame. Suggesting that your stress levels might be responsible for your blocked fallopian tubes or endometriosis is nonsense, and yet many people do end up feeling that it’s their fault they can’t conceive in a culture which encourages you to believe that you can make the difference to outcomes by thinking positive, clean eating or complementary therapies. The truth is that none of these things are going to unblock your tubes or get rid of endometriosis, and for a medical professional to suggest that getting pregnant might miraculously happen naturally if you just relax is quite bizarre.

Even the response has been interesting, with Woman & Home covering the issue with a headline “Lorraine’s Dr Hilary faces backlash following ‘insensitive’ comments during IVF discussion’. They were not ‘insensitive’ comments but insensitive comments – and that’s the understanding that we still need to change!

One or two embryos…

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.

Could you fill in a survey to help with research?

Could you spare a few moments to help with a research project? I’ve just been asked to circulate details to people with experience of fertility problems about an important research project which is trying to establish core outcomes for clinical trials. If all trials into fertility reported on the same outcomes, it would be possible to combine studies to get really meaningful data to help fertility patients in the future. The research team would like your views as they want to involve lay people with lived experience in helping to shape what the main outcomes should be.

You can read more about the project here and if you decide you would like to take part by answering their questionnaires, you can do that here, apparently it should take no more than 15 minutes to complete. Thanks!

 

Can you be happy if IVF doesn’t work?

It’s one of those things people don’t even want to think about when they’re going through fertility treatment – what might happen if it didn’t work, ever? Could you really be happy if you didn’t end up with a baby? What would you do if all that time, effort, money and emotional investment led to nothing? Would your life ever feel fulfilled and enjoyable? Could the overwhelming sadness go away? I want to tell you about someone who is a brilliant example of the fact that life after IVF treatment can be both fulfilled and enjoyable. She’s called Lesley Pyne, and I first met her when I was a trustee for the charity which is now Fertility Network UK. Lesley was one of my fellow trustees, and had joined as she was involved with the section of the charity for people who were involuntarily childless known at the time as More to Life.

Today, I met Lesley for the first time for a while and it struck me that she looked about 10 years younger than she did when I last first knew her – which means she must look about 20 years younger than she really is! Her eyes were bright and shining, and her zest for life was almost palpable. Lesley, who always seemed to be making an effort not to stand out when we were fellow trustees, was dressed in bright colours with electric blue nails.  She is happy, she is making the most of the good things in her life – and she has just written a book explaining how she went from feeling devastated by unsuccessful treatment to this confident, happy woman who gets the best out of her life – it’s due to be published in June and is called Finding Joy Beyond Childlessness.

It strikes me as we talk that Lesley has embraced something we could all learn from – living for the moment, focusing on the positives and making an effort to enjoy what we have. I haven’t read Finding Joy Beyond Childlessness yet – but she explained that it contains her story and those of a number of other women who have come out the other side of involuntary childlessness to find fulfilment. She says it is a journey,  and it can be hard along the way, but that there is life beyond childlessness, there is more to life – and if you need help along that path, keep an eye out for Lesley’s book when it comes out in June.

New fertility group for South East London

I’m going to be running a new fertility group for Fertility Network in Greenwich in South East London which you are welcome to join! We are having our first meeting on the evening of Tuesday March 27. It will be great to see you if you are able to come along!

I first went to a group when I was going through IVF myself and found it hugely helpful to meet other people who understood how we felt. I was a bit uncertain about going along – I didn’t think I was the sort of person who went to group meetings – but in fact it wasn’t gloomy or depressing or any of the other things I’d expected. If anything, it was actually quite uplifting to be in a room full of people who weren’t going to stat asking questions about when we were going to have a baby and why we were leaving it so late…

I’ve run a number of different fertility groups over the years since then and have seen at first hand the benefits they can bring. So why not come along and join us and find out for yourselves…

You can join our brand new Facebook page to find out more or you can get in touch via the contact page here – and hope to see you on the 27th.

Fertility Fest 2018

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!

Fake posts

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“.

The IVF diary

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.

Frozen embryo success

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

If you haven’t been able to have the children you wanted

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