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.

Making Friends with your Fertility

If you’re looking for a book to support you through your fertility journey, then Making Friends with your Fertility written by specialist fertility counsellor Tracey Sainsbury along with co-author Sarah Rayner may be just what you’re looking for. It contains all the basics you need to know about fertility and treatment but what’s so good about this book is that it is written by someone who really knows how it feels and who understands the difficulties you are likely to face along the way.

I remember having lunch with Tracey some while back now when she told me she was thinking of writing a book. I knew right away that it would be the kind of book fertility patients would welcome, as Tracey is not just a fertility counsellor working in fertility clinics, she also has personal experience of fertility problems, and worked for the charity Fertility Network UK for years. She has known fertility patients as a peer, as a professional and as a support worker and she has a unique perspective on the journey.

So many books about fertility are packed with advice about how to improve your chances of successful treatment through positive thinking. At one level, it may seem helpful to talk about relaxation but what I love about Making Friends with your Fertility is that Tracey appreciates that experiencing fertility problems and going through treatment can be traumatic, and that feeling stressed is a perfectly normal reaction to this. Tracey’s book won’t tell you to “just relax” or to “think yourself pregnant”, but will rather support you to stop blaming yourself for how you feel.

I think Making Friends with your Fertility is a bit like having your own personal fertility counsellor at hand to turn to whenever you need support along the way. There’s a lot here about how you might feel emotionally and how to handle that – and it’s sensible advice. If you want a fertility book that is going to support you along the way, rather than set you impossible challenges, then Making Friends with your Fertility is one to recommend!

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.

Endometriosis Awareness Week

It’s Endometriosis Awareness Week organised by the charity Endometriosis UK. They are aiming to increase understanding of endometriosis particularly among women who may not yet have a diagnosis. It takes a shocking average of seven and a half years in the UK to diagnose a woman with endometriosis.

The charity’s website is full of useful information about endometriosis and explains the symptoms which can include painful, heavy, or irregular periods, pain during or after sex infertility, painful bowel movements and fatigue. Around one and a half million women in the UK are currently living with endometriosis which can affect anyone of childbearing age.

There are lots of ways to get involved if you are interested, and you can organise or take part in Endo the Night which is a fundraising initiative aimed at helping to support the charity. Meanwhile, if If you want some quick information on endometriosis, you may also find this helpful – an article about endometriosis with tips leading fertility specialist Anthony Rutherford.

Fertility Education

Congratulations to the brilliant team at the Fertility Education Initiative for getting the subject of fertility education on the agenda. It was fabulous to see the subject covered on the front page of The Times, and also covered in the Sun and the Mail. The Fertility Education Initiative’s Jessica Hepburn and Professor Joyce Harper even featured on the Victoria Derbyshire show talking about this.

It’s such an easy subject to misunderstand or misinterpret – and people are often worried that talking to young people about infertility will mean they assume they don’t need to worry about contraception. In fact, this couldn’t be further from the truth as fertility education is about ensuring young people really understand and are fully informed about their own fertility. All too often, women who find they’ve left themselves a fairly small window of opportunity to conceive feel that they weren’t fully informed about their own reproductive clock or about the limits of fertility treatment.

You can read more about the Fertility Education Initiative here where you can also find answers to some common questions, and see a video of the Fertility Education Initiative’s Health Summit Choice Not Chance held in 2016.

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 – 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.