afterword... The Fertility Show

This weekend's Fertility Show was very busy - more than 3,600 visitors over the weekend - and it was lovely to meet some of you and to find many old friends too.  The seminar programme this year was fantastic with really interesting topics addressed by some of the world's leading experts in their fields and most of the talks appeared to be packed out.

There were quite a few clinics from the UK exhibiting at the Show, mainly from London and the South East, but they were rather outnumbered by their counterparts from overseas who have clearly realised that more and more people are considering travelling for fertility treatment.  There were fertility specialists from Spain, Russia, Latvia, Georgia, Italy, Barbados, the Czech Republic, Norway, Denmark, Greece, Sweden and across the USA from Florida to Chicago. I spoke to a number of people who were considering treatment overseas and they'd found it really helpful to have so many different clinics from around the world all gathered under one roof.  It can be very hard to distinguish between one and another when you're only judging them on their websites and email communications, and the opportunity to meet staff face to face and get a feel for the clinics and what they can offer is quite unique.

For me, it was really good to see so many patient support organisations there too - Infertility Network UK, the Donor Conception Network, International Asherman's Association, Klinefelter's Syndrome Association, Fleur and the lovely team from Verity PCOS who must be congratulated on their purple theme which even went as far as a rather wonderful pair of handmade purple earings...

As it is National Adoption Week, it was heartening to see that a number of fostering and adoption agencies were represented too as this is an alternative route to parenthood that some may want to consider.

Everyone I spoke to who'd visited the Show had found it to be a beneficial experience.  I know some people do feel it is a rather commercial affair for a medical problem, but fertility treatment is a massive commercial industry. Personally, I think the opportunities a weekend at The Fertility Show can offer outweigh any such concerns.  If you're not into fertility astrology or crystal therapy, you don't need to spend time at the stands offering them. It's a matter of picking and choosing the things that you want to know more about and making the most of the opportunities the weekend can afford.

Come and say hello...

If you’re going to The Fertility Show at London’s Olympia tomorrow, do come and say hello.  I’m speaking at 11.45 about choosing a clinic, and then chairing a Q and A session with two overseas clinics at 3.30, so do come and find me if you’re there.   If you haven’t booked in advance, you can still turn up and pay on the door.

Piatkus, who publish my books, have very kindly donated some copies of The Complete Guide to IVF to the Infertility Network UK stand where they can be exchanged for donations to the charity, and I will also have some copies of Precious Babies, my latest book about pregnancy, birth and parenting after infertlity.

The Fertility Show is always a really interesting two days, and this year is on track to be the best yet with a fascinating array of seminars and exhibitors from around the world.  If you want to know more about exactly what’s on and when, go to www.fertilityshow.co.uk

Could you ask strangers for money to pay for IVF?

It may sound incredible, but apparently people are having to come up with ever more inventive ways to fund their fertility treatment in the current economic situation.  With many couples already living on overdrafts, cutting back on holidays or other luxuries will not free up the ready cash needed, and getting loans or using already overloaded credit cards is becoming increasingly difficult. So, in the States at least, some couples have apparently turned to the internet using websites or Facebook to ask strangers for money to fund their treatment – see this article.  Could you consider this? Should you have to?

Here in the UK, the postcode lottery for treatment continues to cause distress to many couples who find they can’t access IVF despite being eligible according to the national guidelines because in their local area the primary care trust has decided not to fund treatment – or to ration it.  It can be very difficult to find the money for private treatment which will cost more than the NHS would pay.  Lord Winston campaigned on this some time ago – saying that many clinics were hugely overcharging for fertility treatment and that it could be far cheaper.

Asking strangers for money may seem extreme, but does perhaps illustrate how difficult it can be to live with involuntary childlessness…

Is it ever right to raffle fertility treatment?

When plans for an IVF lottery were announced here in the UK, the overall response was far from positive with questions raised about the ethics and the finances, but in the US it appears that running lotteries for fertility treatment has become more common.  One clinic even asked people to enter a competition to win treatment by writing or making a video about their fertility problems and why they deserved treatment…

It’s true that our current access to funded fertility treatment is problematic to say the least, and that many couples simply can’t afford to go privately – but does that make running lotteries for treatment right? Those in favour argue that it offers hope, but if your chance of winning is one in a million, it’s probably more about raising unrealistic expectations.  Lotteries may be a good way for clinics to gain publicity, they may be a good way for individuals to make money – but I don’t see how a lottery can ever be a satisfactory way to offer healthcare.

If you’re interested, you can read more about the US lotteries here 

Eggs from skin cells

It's hard not to get excited about stories like today's news of Japanese scientists successfully creating embryos from skin cells which led to the birth of fertile offspring.  The reality is that this is a technique still in the very early stages which is not going to be available in your local fertility clinic in the foreseeable future, but it's still an amazing development.

The Japanese team had already managed to create sperm from stem cells, and this is their latest advance. They performed a very complex experiment, creating eggs from skin cells, building an ovary-like structure to support the eggs when they transplanted them into the mice, and then using IVF techniques to fertilise the eggs.  Not only did the embryos implant and lead to pregnancies, but the babies themselves have been shown to be fertile and able to reproduce.

There is still a very long way to go to find out whether this could work with human skin cells and eggs, but it does offer hope for the future.  Fertility treatments have become more successful in recent years, but cannot reverse the effects of the biological clock on female eggs - and women who don't have viable eggs of their own currently need to use donor eggs.  Today's news raises the possibility that perhaps one day in the future, there will be other options available.

Fertility information - Northern Ireland

Sometimes it can seem as if anywhere outside London gets forgotten when it comes to fertility-related events, but for anyone living in Northern Ireland there's good news with a special Fertility Information Day set for October 20th.  

Run by the lovely Sharon Davidson from Infertility Network UK, the day will take place at the Hilton Hotel in Templepatrick, Ballyclare.  A variety of presentations and workshops are planned including sessions on new developments in treatment, donor treatments, nutrition, complementary therapies, emotions and stress and dealing with work issues. A number of fertility clinics will be running exhibition stands on the day too.

The day costs just £10 - unless you are a professional working in the field in which case it is £25 - and that includes refreshments and a sandwich lunch.  For more information, click on this link.

The FertilIty Show

It's nearly that time of year again... I've just been sent posters and flyers for The Fertility Show, which this year runs over the weekend of November 3 and 4 at London's Olympia.  Promising to be a bigger event than ever before, there's an impressive range of speakers lined up covering pretty much everything you could want to know about fertility from the absolute basics to the latest new techniques in IVF.  The seminars also take in many related issues including complementary therapies, surrogacy, treatment for single women and lesbian couples, the male perspective, adoption, fostering, treatment abroad and help and support too.

This year there are around 100 exhibitors too, giving you a chance to talk to staff from fertility clinics around the world as well as complementary therapists, legal firms and support networks. The Fertility Show gathers together leading experts in the field along with a wide range of specialists all under one roof for one weekend - and provides an ideal opportunity to learn more in a supportive environment.

I know it's not always easy to get your head around going to a "show" about fertility when it can be hard to talk about the subject to your closest friends and family, but one of the real benefits of the weekend is being in one place with so many other people who know exactly how you're feeling - although infertility affects one in six of the population, it doesn't always feel that way when you're in the middle of it all.  

Take a look at the website - www.fertilityshow.co.uk- and see what you think. I'll be there on the Saturday, talking about how to choose a fertility clinic and chairing a question session with overseas clinics - so come along and say hello1

Quintuplets - should this really be a success story?

I've just been reading about a "miracle" birth in the States, where a woman has given birth to quintuplets after fertility treatment.  The tiny babies were born at 28 weeks and are apparently "critical but stable".  It is so very sad that anyone who has had to go through the traumas of not being able to conceive should then have the further trauma of premature babies spending weeks if not months in intensive care in hospital. The babies are in an intensive care unit that has just recently been caring for sextuplets, born to a couple who had IUI.

No reputable fertility professional should be putting the lives of babies and mothers at risk by carrying out treatment which results in the conception of five or six babies at once.  We are only hearing about the babies which make it as far as being born, albeit prematurely, but it would be far more common to miscarry when so many embryos implant at the same time.

In the early days of fertility treatments, when specialists were still unsure quite how women's bodies would react to fertility drugs, such multiple conceptions may have been more understandable, but there is no need for anyone to take such risks any more - and any fertility specialist who boasts sextuplets or quintuplets on their CV should be avoided as they certainly don't have their patient's best interests at heart.

GPs lack knowledge and empathy when it comes to fertility problems...

As you may remember reading on this blog a few months ago (yes, we're often ahead with the news...), research for the National Infertility Awareness Campaign has found that nearly half of all GPs lacked knowledge about infertility and treatment and many found that their family doctors were very unsympathetic.

It's a great shame as showing a little compassion can go a long way when it comes to fertility problems, and the NIAC research makes me realise how fortunate I was when I first went to see my GP about not getting pregnant as he immediately offered to do some tests and set us on our way.  He was very matter of fact about it all, which was actually really helpful as it made me realise that this was a common problem and that there were things we could do.

What's even more depressing about the NIAC survey is the fact that a third of women who should qualify for fertility investigations and treatment are turned away by their doctors and made to wait.  The results of the survey would suggest that it's always worth getting a second opinion if you feel your doctor isn't taking the problem seriously.  I know how hard it can be as not being able to conceive often erodes your self-confidence and you may not feel able to argue your case when faced with an unsympathetic GP - but it may make all the difference in the long run.

You can find more details about the NIAC research on the Infertility Network UK website

   

Thank goodness you don't live in Malta...

If you ever think there’s a lack of sensitivity towards infertility, you should perhaps be grateful that you don’t happen to live in Malta.  There a political debate about regulation for IVF has become increasingly heated with the Church issuing a pastoral letter describing IVF as “morally wrong” and encouraging couples “not to concede to the temptation of taking easy solutions” by having IVF.

The Catholic church has never supported IVF, but such outright condemnation is a terrible blow to religious people with fertility problems.  It’s hard enough not to be able to have a baby anyway, without being told that opting for the medical treatment that could help would be conceding to temptation - it seems to me to be a particularly cruel line in emotional blackmail.  What's more, I don't think anyone who'd had any personal experience of fertility treatment would describe IVF as an "easy" solution.  It's not as if there are any effective alternatives either...

For anyone who has had treatment, the pastoral letter allows that their offspring are apparently "still the children of God, even if the methods through which they were conceived go against Church teachings and against human dignity".  It seems incredible that such a line could be written in 2012, and after initially feeling horrified at such sentiments, I was left with a sense of sadness that religious leaders could show themselves to be so lacking in empathy, understanding and human kindness.

Responses to article on fertility education for schools

I knew when I set out to write a piece for the Guardian about including infertility into the school sex education curriculum that it was a contentious issue, but hadn't anticipated how angry the idea would make some people.

None of the people I interviewed were suggesting any hugely radical changes, just mooting the thought that including some teaching about fertility awareness at school might be helpful.  It became apparent during my research that sex education isn't always as good as it could be, and that young people are often left confused about reproduction and fertility.  Even any worries about sending potentially confusing messages by teaching about infertility were allayed when it became apparent that including this as part of a coherent well-planned sex education programme would probably help to reduce teenage pregnancies, rather than encouraging young people to take risks.

So why did the suggestion make some people so cross?  I've always been fascinated as to why any mention of infertility sends a small percentage of the population - often those with quite a few naturally-conceived children of their own - into some kind of mental tail spin.  Not only did many people start raging at the very thought of mentioning infertility to young people, there were also the by-now-all-too-familiar rants about infertility itself.  What on earth induced one person to say that we should be "grateful" for infertility in the light of our rising world population?  Imagine changing that a little and suggesting we should be "grateful" for heart disease or cancer in the light of population growth...

One of the tweets I received after the piece summed it up for me, saying that the comments alone showed that infertility should be included into the sex education curriculum to encourage more understanding if nothing else -  and with that, I would most certainly agree...

Being unhappy doesn't affect IVF outcomes...

I was hugely heartened by the recent research, published in the journal Fertility and Sterility (awful title but it's an academic journal!),  which showed that feeling anxious or depressed when going through fertility treatment didn't affect the outcome.  I've always maintained that it's unhelpful to tell people who are embarking on fertility treatment that they should be cheerful and positive when they are living with  the huge emotional ups and downs of infertility - it just seems completely unrealistic.  I know I felt stressed, anxious and worried when I was having IVF.  I was not happy, I was not positive, I was unable to "visualise success" or any of the other things that we are often told will increase our chances of a successful outcome - and yet my treatment worked.

We need to be realistic, to accept that infertility is stressful, that it often makes you unhappy and miserable.  There's a growing industry surrounding conventional fertility treatments of complementary therapists and coaches who make a lot of money telling us how they feel we can improve our chances of success. Some of this can be very helpful, but it is perhaps inevitable that when those who have no personal experience take an objective view of infertility and treatment there are sometimes fundamental misunderstandings which can lead to this kind of advice that's often way off the mark. It's just like the friends who tell you that you'd probably get pregnant if you stopped thinking about it...

I've seen too many people who've blamed themselves for their unsuccessful treatment, somehow feeling that they've failed when it doesn't work, and that it must be something they've done or haven't done, that it might have worked if they'd been able to be more upbeat and positive.  Now there's research to show that this simply isn't the case - infertility and unsuccessful treatment makes you depressed - depression doesn't lead to infertility and unsuccessful treatment.

We're still trailing behind when it comes to IVF

Anyone who has any personal experience of IVF will know that our funding situation in the UK is patchy at best, but the report released from ESHRE this week showing quite how badly we're trailing behind our European neighbours was still something of a shock. We came third from the bottom in a European table for funding fertility treatment, with only Russia and Ireland behind us. Belgium and Denmark both fund around three times as much treatment per million inhabitants as we do.  Even Slovenia funds twice as much.

I've just been on Radio Humberside discussing the situation, and the presenter seemed not to have considered that infertility might be a medical condition. It always strikes me as odd that if it's your fallopian tubes or your ovaries that don't work, a medical problem becomes  a "lifestyle choice".  Where do we draw the line with "lifestyle choices" and medical treatment? Infertility is not going to kill anyone, people often say. No, it probably isn't, but surely the NHS wasn't set up only to treat people who would drop dead if they weren't helped right away?  Even funding three full cycles of IVF for all those who needed it would be a tiny drop in NHS budgets - and cutting all IVF funding entirely wouldn't begin to solve our financial problems (indeed it could make them far worse, if more and more fertility patients started going overseas and coming back pregnant with triplets).

I think this debate is about something much more than infertility - although our attitudes to families and children in the UK probably provide an interesting tangential discussion. It seems to me that deciding that some medical conditions are unworthy of treatment is the tip of a very large iceberg which rests on our decisions about what the NHS is for. What other treatments might constitute "lifestyle choices"? Hip and knee replacements perhaps? Might people decide that they aren't entirely essential?  Perhaps being able to walk long distances without any pain is a "lifestyle choice" - you don't have to walk far, you can take painkillers.

Cutting IVF funding is easy - some people even think it's a good thing.  People with fertility problems are often so distressed that they haven't told their closest friends and family about what's happening to them.  They aren't going to be outside the local PCT waving banners and shouting.  Just because something is easy, that doesn't make it right - and being oblivious to the longer term consequences of short-term financial decisions seems to be all too common at the moment.

Meeting at the House of Commons

I've meant to tell you about the meeting of the All Party Parliamentary Group on Infertility for weeks, but am only now finally getting round to it - the picture shows Infertility Network UK Chief Executive Clare Lewis-Jones with the group's Chair, MP for Dartford Gareth Johnson.  Sadly, only one other MP came to join the meeting which was a great shame as it was an opportunity to show support and to help to raise awareness. It was fortunate that so many of those with an interest in fertility who had been invited by the National Infertility Awareness Campaign did turn up - making the meeting feel very well attended.

Clare Lewis-Jones presented the findings of some very interesting research carried out by the National Infertility Awareness Campaign which showed that more than half of all fertility patients had found their GP to be either unhelpful or lacking in knowledge about infertility and treatments when they visited. It must be very difficult for GPs who are expected to be up to date with every health problem and every potential treatment, but one of the problems for fertility patients is the lack of time that they have to give in an appointment when discussing a fertility problem is often difficult and upsetting.

Let's hope that more MPs make time to come along to the next meeting of the All Party Parliamentary Group on Infertility to show their support and to help increase understanding.

What are we called?

I was reading a blog post the other day that referred to people with fertility problems as "infertiles" and it made me think about what we call ourselves.

I prefer to think of myself as having a fertility problem rather than an infertility problem - and I tend to talk about fertility treatment rather than infertility treatment.  I know some people feel that using the word "fertility" rather than "infertility" is just evading the issue - but at the same time, most of us are actually sub-fertile and have some chance of conceiving with treatment, rather than being absolutely infertile, with no chance at all.

I'd only ever come across the use of the word "infertiles" to describe people with fertility problems once before, and I don't like it any more now than I did then. To me,  it's just a horrid word. It's so stark and seems to add to the stigma.  What do you think?

Another day, another IVF scare story

Have you noticed how every IVF story begins with a couple's "desperate bid" for a child? Perhaps that should be every cliche-ridden story, but it's such a horrible phrase.  I desperately longed for a child, but I wasn't making a "desperate bid" for one by having IVF - I was having the treatment needed to sort out a medical problem.  Do people make "desperate bids" for treatment for any other medical condition I wonder? Anyway, enough...

The newspaper story I've just been reading (which begins with the formulaic "desperate bid")  is about a couple who had ICSI twins delivered prematurely, and it suggests that the problems they experienced must be down to the ICSI - without any consideration of the fact that they were multiples born prematurely when we know that multiple birth is the biggest health risk to IVF babies. 

The article in question went on to catalogue virtually every scare story about IVF just in case you weren't sufficiently freaked out (with a small caveat admitting that actually there was some conflicting evidence). It even suggested that parents of IVF children were constantly worried about what their fertility treatment might have done to their children's health when they were much older, concluding that if you have fertility treatment it will always continue to cause you "unimaginable anxiety" - I interviewed dozens of IVF parents for my book Precious Babies and can assure you that this is simply not true.

Please don't get taken in by scare stories - talk to your fertility specialist and get an expert's insight into the situation. I'm not posting a link to the original story - if you've read it, I hope this reassures you - if you haven't, please don't bother.

What's the worst thing anyone's said to you...

If you haven't seen this video yet, it's worth watching - just to reassure yourself that you're not the only person to have come across some of these "helpful" comments from other people.  One thing we all find is that people who know absolutely nothing about infertility are more than happy to give their advice and suggestions as to what you ought to be doing or ought not to be doing - and there's often an underlying suggestion that somehow it might be your fault, which only serves to exacerbate the stigma that so many of us feel.

It's difficult. People can't always get it right, and they don't always mean to be unkind or hurtful, but most of us have out own lists of the most unhelpful things that people have come up with.  Do you have any particular favourites?  Mine include an agony aunt (surely she ought to know better?) who advised couples with fertility problems that they might want to consider buying a dog instead of continuing to try to have a baby and the person who seemed to need to remind me on a regular basis that she had got pregnant by mistake.

You're bound to recognise one or two from the video - the "maybe it just wasn't meant to happen" type comment is a regular one...  And the lose weight/gain weight/stop thinking about it/be less obsessed with your career comments are popular too...  Maybe we should compile a list...

IVF in the news again

Another day, another IVF scare story... or at least that's how it sometimes feels.  We're forever being told that this procedure or that type of treatment is risky for us or our future children.  It's not always easy to make sense of what lies behind the headlines or to decide what might be best for you.

The latest story claims that fertility clinics are putting profits before women's safety by opting for traditional rather than mild IVF, which involves lower doses of drugs.  The safety aspect appears to focus on ovarian hyperstimulation, a condition that occurs if the ovaries become over-stimulated after using fertility drugs. Ovarian hyperstimulation can be very dangerous, but specialists usually have an idea of which women are particularly likely to be at risk before they start treatment and tailor drug doses accordingly.  Once fertility drugs are being administered, regular scans can give an idea of situations where the ovaries are starting to respond too strongly - and in these cases treatment is normally halted, at least for a while.  So yes, of course ovarian hyperstimulation is a risk of fertility treatment, and yes, of course you may want to talk to your fertility specialist about how they ensure the dangers are reduced - but don't be completely panicked by another scare story.

Whatever the rights and wrongs of mild IVF,  today's stories go far beyond that.  One talked about the "toxic" drugs used in fertility treatment in the UK and made it sound as if we use completely different, old-fashioned dangerous drugs here when everyone else in the world is using some kind of safe, modern drug. It's simply not true. Talk to your consultant, talk to your doctor or fertility nurse, talk to your counsellor - then make the decisions that are right for you - and take your daily paper with a pinch of salt!

The men's room

Those of you who have ever been to a fertility clinic will know exactly what I am talking about - the place where you are sent to "produce your sample". They aren't places any of us tend to think about too much - and that we'd only manage to talk about with fertility friends after a glass or two...

When I was researching my first ever book about infertility some fifteen years ago, I interviewed a dozen or so couples and two of the men had been to the same clinic, with the same men's room which had clearly had quite an impact as they both told me about it in great detail during the interviews. Not about the room itself, but about the key which was attached to what they both described as a "plank of wood".  To go to the men's room you had first to collect the key, and then walk right through the clinic carrying this thing that you couldn't disguise so that it was clear to all where you were going and what for. For the same book, another man told me about being sent to the men's toilets in a local hospital to produce a sample where an old man kept coughing in the next cubicle and where the doors left his legs and head visible to anyone who happened to come in.

I was reminded of this today during a brilliant presentation at the British Infertility Counselling Associations Study Day by photographer Aaron Deemer, who has been touring the country taking photos of the men's rooms in clinics.  The idea sounds utterly bizarre, but hearing Aaron talk, you soon understand that his personal experience has led him to discover a truly unique way of getting people talking about infertility.  The photos themselves are fascinating - a selection of very different rooms;  some cold and clinical, others designed to try to look vaguely appealing but rarely succeeding.  There's one slightly sinister room with what looks like a dentist's chair surrounded by downlit spotlights, another had what Aaron described as a "fake plastic cannabis plant" plonked in the middle of a room full of chairs that doubled up as the staff conference room.  There was a room that Aaron said reminded him of his teenage bedroom with a narrow bed and patterned curtains.  One room had bars at the window, another had a phallic photo of the Eiffel Tower on the wall.

Aaron's project is called "Please Make Yourself Uncomfortable" and if you get the chance to hear Aaron talk or to see the photos, don't miss the opportunity. He manages to access something we often find difficult to talk about and to present it in such a way that it encourages discussion.

Waiting rooms

I ended up spending a lot of time last night in a hospital waiting room (with a suspected eye problem which turned out to be absolutely fine), and it made me think about the amount of time I must have spent over the years in fertility unit waiting rooms - and how different they are. Last night, there were a huge range of people in the waiting room with all kinds of different eye problems but we were stuck there together, waiting - and so, after a while, people began to smile at one another or raise eyebrows as we waited on and on, and then began to chat. I spoke to three different people who happened to be next to me over the course of many hours as we lamented our inability to be able to read due to the drops they'd put in our eyes and wondered whether we'd ever get home. It's odd in a way that the spirit of being in an unpleasant situation together very rarely makes fertility patients start talking to one another. For the most part, we even try to avoid eye contact in waiting rooms, let alone begin conversations. Is it the stigma that still somehow lingers around fertility problems? Is it the fact that we feel so emotional and often close to tears? Or perhaps it's because talking to one another might somehow make the fact that we have to be there seem even more real. It's a shame because there's a huge amount to be gained from talking to others who have the same problem and sharing experiences. Not only is it a huge relief to talk to people who genuinely understand, it also helps to normalise the experience, reminding us that we're not alone and that infertility is really a very common problem. At this point, I have to confess that in all the years I spent in the fertility clinic waiting room I only ever spoke to one person - and that was because she spoke to me first. If talking is too much - and I accept that it quite possibly is - then maybe we should try to at least give one another a smile if we catch eyes at the clinic. It's just a gesture, but sometimes the old saying about a little kindness going a long way seems very true and may make all the difference.