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“.

Have you rated your fertility clinic?

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.

Preventing cervical cancer.

It’s Cervical Cancer Prevention Week, and if you’re due a smear test, make sure you make an appointment now! Women who are trying to get pregnant still need to have regular smear tests, and if you’re worried about it clashing with treatment, discuss this with a healthcare professional. Screening is so important because it can help to protect you from cervical cancer, as can making sure you know about the symptoms and by seeking medical help if you experience these. The symptoms of cervical cancer may include abnormal bleeding between periods or after intercourse, unusual vaginal discharge, discomfort or pain during intercourse and lower back pain.

Around 3,000 women are diagnosed with cervical cancer every year in the UK, and it’s the most common cancer in women who are under 36. The vast majority of cervical cancers are caused by infections with a virus called high-risk human papillomavirus (HPV). HPV is an extremely common virus and it is passed from one person to another through skin to skin contact in the genital area. About 80% of sexually active adults are infected with some type of HPV at some time in their lives but for most of them this won’t lead to cancer.

You can find lots of useful information about every aspect of cervical cancer on the Jo’s Cervical Cancer Trust website.

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

IVF success rates

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.

What is premature ovarian insufficiency?

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.

Feeling fed up with January?

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…