Can environment make a different to IVF outcomes?

When it comes to factors that could possibly have an impact on IVF success, the things that often spring to mind are often those we can influence ourselves – a healthy diet, not smoking or drinking too much – or the kind of add-ons that have become increasingly popular in many clinics such as embryo glue or time-lapse.

For most fertility patients, the type of liquid embryos are placed in at the clinic would not be the first thing to consider when it comes to treatment outcomes – in fact, it’s not something most of us think about at all. However, new research carried out at Boston Place Clinic by Dr Stuart Lavery of IVF Hammersmith, suggests that the culture medium used by the clinic can make a difference to the way that embryos grow. You can read more about the research here 

Other people’s fertility treatment

laptop-computers-1446068-mThe Internet can be a fantastic resource when it comes to finding out more about fertility and treatment, and many people gain important insights by reading other people’s fertility stories online. This can, however, have a less helpful side. Although it may be useful to get practical tips, to read about what happens during a cycle and to feel that you are more prepared for what is about to happen, it is also vital to remember that everyone’s treatment is different. The tests carried out, the protocols used, the drugs prescribed can all vary depending on your own individual situation.

Recently I’ve been contacted by a few people asking about their treatment who have become worried that something might not be right because they’ve come across other people who have had different tests or treatments – or who have been prescribed different drugs at different doses. Just because your treatment is not exactly the same as someone else’s, that doesn’t mean it is wrong or less likely to work. If you have concerns, you should never worry about asking at your clinic, but remember that fertility treatment is always tailored to an individual to some degree and that clinics may not all do everything exactly the same way.

Fertility funding schemes

unknown-6I’ve come across quite a few mentions of fertility funding schemes recently where you pay a lump sum and are then offered your money back if you don’t get pregnant. Of course, the usual criticism of these schemes is that they are only available for younger women who are most likely to get pregnant. So I was interested to read of one recently which was apparently open to women of all ages with no age cut off. However, reading further down the article, it was apparent that actually although there wasn’t an official age cut off, women did have to pass a “screening” – and it is highly likely that by their mid forties, very few women would pass such a test.

These schemes can seem a great option – but it is important to understand their limitations as they are not open to everyone.

Can you ever stop plans to cut IVF

images-10If there are plans afoot in your local area to reduce the number of IVF cycles offered to those who need treatment, or even to cut treatment altogether, you may be left wondering whether there is anything you can do to make a difference. Although there are sometimes public consultations when funding is due to be cut or reduced, it can be tough to have the confidence to put forward your point of view – and sometimes it may start to seem as if there is very little point anyway as people wonder whether those who commission treatment are really listening.

This excellent piece from Bionews written by Richard Clothier tells how he fought back against planned cuts to fertility treatment in his local area. It’s a great read – and you may be surprised by the outcome.

Expert opinion on treatment add-ons

If you’ve been unsure who to believe about fertility proline_level_measurement_in_eurasian_national_universitytreatment add-ons, you may be interested in some impartial and expert advice in two new scientific opinion papers published by the Royal College of Obstetricians and Gynaecologists (RCOG). They call for more high quality research into the role of natural killer cells in fertility and the effect of endometrial scratching on pregnancy outcomes.

Scientific Impact Papers (SIP), are up-to-date reviews of emerging or controversial scientific issues. The first paper looks at the role of uterine natural killer (uNK) cells, how they are measured, the role of testing and the evidence behind any links to improving implantation rates and early placental development. The paper clarifies that uNK cells are completely different from peripheral blood natural killer cells (which you would be testing in the blood tests some fertility clinics currently offer).

The paper makes it clear that there is no evidence to offer routine tests for NK cells as part of fertility treatment or testing, and that there is uncertainty about how NK cells are measured and reported. The paper says that treatment for raised levels with intravenous immunoglobulin (IVIg)  is not supported by the current evidence and, since it may have serious adverse effects, should not be used..

The second opinion paper explores the effect of endometrial scratch on pregnancy outcomes in women who have experienced recurrent miscarriage and recurrent implantation failure.

Endometrial scratch is a procedure which is hypothesised to help embryos implant more successfully after IVF/ICSI and involves scratching the lining of the womb.

Several studies have examined the impact of endometrial scratch in the cycle preceding an IVF treatment cycle in women with recurrent implantation failure, which appear to provide convincing evidence of benefit of superficial endometrial scratch in improving the implantation rate in this group of women. However, the effect of this treatment on pregnancy outcomes in women who have experienced recurrent miscarriage or those undergoing their first IVF cycle is uncertain.

Professor Adam Balen, Chair of the British Fertility Society (BFS) and spokesperson for the RCOG, said: “These two papers look at the current available evidence which exists and give much-needed guidance to both healthcare professionals and the public on these two topics. It is important that patients receive full information about treatments, the current evidence for benefit and whether there are any side effects or risks associated with it.”

Mr Mostafa Metwally, Vice Chair of the RCOG’s Scientific Advisory Committee added: “There is currently no convincing evidence that uterine natural killer cells are the cause of reproductive failure. Despite this, a number of women are requesting and being offered analysis of either peripheral blood or uterine killer cells and the value of these measurements remains controversial. Current evidence suggests that endometrial scratch may benefit women with recurrent implantation failure and therefore defining the optimal number of previously failed embryo transfer cycles needs to be evaluated in large cohort randomised prospective clinical trials.We still do not understand the mechanism by which endometrial trauma may lead to improvements in IVF outcomes in women and further studies are needed looking specifically at its success among women undergoing their first IVF cycle.”

The papers are available here:

The Role of Natural Killer Cells in Human Fertility

Local Endometrial Trauma (Endometrial Scratch): A Treatment Strategy to Improve Implantation Rates

How to handle Christmas when you’re trying to conceive

juletraeetIt’s that time of year again and it can seem as if you can’t escape images of cheery happy families whatever you do and wherever you go.  Christmas is always a difficult time for anyone trying to conceive when it can feel as if everything conspires to remind you of what you don’t have – and of course, the festival itself is all about celebrating a very special birth.

I know lots of people offer lots of different advice about how best to get through the next few weeks, but I think the bottom line is that you need to try to find a way to make the Christmas break an enjoyable or rewarding time for yourself. It isn’t easy if you end up with dozens of invitations to family parties or child-focused events, but don’t forget that this is your holiday too and your top priority should be looking after yourself.

Christmas is meant to be a time of giving, and sometimes we assume that means that we need to put what others want and need ahead of what we might want and need ourselves – but actually sometimes that’s not the best thing to do. If you know you are going to spend a miserable afternoon at your friend’s Christmas party surrounded by the friends she’s made at her daughter’s nursery school who all want to discuss how to get children to eat broccoli and which is the best local primary – and who will all ask whether you have children yourself – it’s really quite acceptable to make an excuse not to go and just arrange to see your friend at another time over the Christmas period.

This is true of any events over the holiday period. Try not to feel guilty about making an excuse if you need to. Sometimes other people may not seem to understand, but there’s nothing wrong with being honest and saying that actually you would just find it too painful if you feel able to do that. Otherwise, you can always make an excuse – at this time of year, there are often so many things on that it’s very common to be double-booked. Don’t feel you have to do things that you know will make you feel upset and unhappy just because it’s Christmas.

If Christmas makes you feel lonely, never forget that there are 3.5 million people across the UK having difficulty getting pregnant – and it may be that your neighbour or colleague is experiencing exactly the same feelings.

Think carefully about the things you would like to do – an adults drinks party, a trip to the theatre or cinema and maybe you’d like to celebrate in your own way and do something completely different whether that’s a Christmas trip somewhere completely different (IVF-diminished funds permitting), a long seaside walk, tapas for two at home for Christmas lunch or a Christmas Day film marathon. You could consider doing something completely different, perhaps volunteering with an organisation like Crisis which provides Christmas for homeless people or Community Christmas which provides celebrations for isolated elderly people – in London, another option is Whitechapel Mission but there are similar schemes across the UK.  It really is up to you what you want to do, and you don’t need approval from anyone else. Do something that will make you feel good and that you will enjoy – and most importantly, try to have fun.

 

 

 

 

Left confused about intralipids?

lipidemulsionIf you watched Panorama yesterday and were left worried or confused about intralipids, there are sources of accurate and sensible information.

Looking at some of the comments from fertility patients after the programme, it seems that many people were actually surprisingly unconcerned by the lack of evidence for many of the treatments discussed because they felt if there was any chance at all of something making a difference, they would still be happy to try it.

What the programme didn’t make clear was that there are some potential health risks from using intralipids. These are clearly explained on the current HFEA website which has excellent information on reproductive immunology and covers intralipids. There is also a basic information sheet on add-ons from the British Fertility Society.

Will my IVF work?

ivf_science-300x168You may have heard about the new predictor tool for IVF/ICSI which has been developed recently which is available through the University of Aberdeen website.

It uses data from the Human Fertilisation and Embryology Authority which keeps records of all cycles of treatment carried out in the UK, to aim to give a picture of your individual chances of having a baby after IVF/ICSI treatment,

The reporting of this has been analysed by NHS Choices which points out that there are some gaps in the data which the researchers themselves have acknowledged as it doesn’t account for the woman’s body mass index (BMI), whether she smokes and how much alcohol she drinks.

Despite these limitations, it is certainly a very useful tool and one which may help many couples get some kind of realistic idea of the chances of an IVF cycle working. Of course, the experience of each individual couple is always different and this doesn’t allow you to include any detailed medical data either, but it does give a broad picture view which may prove very helpful.

Interview with Julia Leigh, author of AVALANCHE

7432976-1x1-700x700We spoke to Julia Leigh, author of Avalanche, at the start of our National Fertility Awareness Week and began by asking her what she thought of the idea.

It’s a wonderful idea which I hope will focus more attention on under-reported fertility issues. Also, it’s a special way to bring together those whose lives have been touched by infertility.

Do you think we are too reluctant to speak openly about fertility issues?
There’s no reluctance on the part of the multi-billion dollar worldwide fertility industry to promote this area of medicine. For example, this month [October] the American Society for Reproductive Medicine Scientific Congress & Expo took place in Salt Lake City, Utah. Exhibitors represented at the Expo included a fertility clinic network; a myriad of ‘bio tech’, ‘health technology’, ’genetic screening’ and ’diagnostic solutions’ laboratories; biopharmaceutical manufacturers; food and vitamin supplement manufacturers; pharmacists; surrogacy and donor organisations; laboratory equipment suppliers; attorneys; insurers; cryobankers and cryoshippers; marketing and brand strategists; a big data analyst; specialist software providers; and a joint venture partner who promised to turn growing medical practices into successful businesses. There’s also no reluctance on the part of the media to report successful ‘miracle’ births. There is a reluctance, however, to talk openly about the plain fact that most treatment cycles fail. To give some perspective, about 80% of treatment cycles fail. There’s also a disturbing reluctance to talk openly about the physical and emotional harms of treatment. It’s almost as if patients and doctors and others in the fertility world are so bewitched by the beautiful possibility of a ‘live birth’ that they turn a blind eye to the real harms.

Your book Avalanche about your own story is intensely personal – was it difficult to be so open in public?
At the time of writing I felt that I’d already lost so much I didn’t care about losing face – and that afforded me an enormous freedom. My heart goes out to anyone who is doing treatment now.

What made you want to write the book?
I wrote an Author’s Note for my publishers and I think it gives the best idea of why I wanted to write the book. Here it is:
A writer contemplating whether or not to begin a new work asks herself – Is this truly a story worth telling? Avalanche felt necessary. I’ve tried to tell an intensely personal story about a common experience that has largely remained unspoken. I wanted to offer a ‘shared aloneness’ to anyone who has desperately longed for a child. I hope I’ve brought into the light the way the IVF industry really works – and I could only do that in non-fiction. I wanted to transmit what it feels like to be on the so-called ‘emotional roller-coaster’, to deeply honour that complex experience in all its detail. Ways of loving, the mysteries of the body, the vagaries of science, the ethics of medicine – the material raised so many questions. I started writing it very soon after I made the decision to stop treatment because I wanted to capture my strong feelings before they were blanketed by time. I wanted to write something for all the women who are contemplating IVF, or currently undergoing it, or who have stopped or who are thinking about stopping (it’s so hard – the decision to ‘give up’). I wanted to speak to their family and friends. I wanted to speak to young women who in a misguided way might be relying on fertility treatment as a kind of back-up. And I wanted to speak to the policy-makers too. Since there is so much IVF failure I wanted to provide an alternative voice to the miracle stories we frequently see in the media. I wanted to counter the push – yes, the push – of the worldwide multi-billion dollar IVF industry.

Do you think people need more emotional support when they are going through treatment?
It’s difficult to discuss treatment with family and friends but in so doing a patient can lighten the emotional burden. There’s also the counselling option. In my case, the clinic offered free in-house counselling as part of the very expensive treatment package…but I would advise seeking an outside independent therapist. I say this because the decision to stop treatment, to give up, that incredibly painful decision, sits uncomfortably with the fact that clinics are making money from their patients. In my case, when I was 44, using my own eggs, and I’d already done 2 IUI’s and 6 egg collections plus subsequent transfers, my doctor suggested I try once more. It was my sister who had the courage to tell me firmly that I needed to stop. I feel an independent therapist would be well-placed to basically warn patients of the emotional pitfalls that can lay ahead. Is there such a thing as pro-active counselling? Identifying the traps for new players and advising how best to respond to them…identifying the tricks of the mind that don’t serve patients well…I think a therapist who was familiar with the IVF world, who had experience in this area, would be best.

And do you think there is adequate support when treatment doesn¹t work?
There was little to no follow-up from my clinic after I decided to stop treatment. I can’t recall exactly – there may have been one phone call. I saw an independent therapist.

Here in the UK, the individual success rates for individual clinics are collated and published by the fertility regulator, the HFEA, and are broken down by age too. Do you think access to information like this would have made a difference to you?
Yes I would have loved to see results for my individual clinic. That would have helped. But I also want to note that I did see the graphs on my clinic website which used our ANZARD data and clearly showed how fertility dropped away with age. (The ANZARD report collates data from all clinics in Australia and New Zealand but doesn’t identify individual clinics). And when I was 40 my first doctor at the clinic said I had about a 20% chance of ‘taking home a baby’. BUT as it happened, at age 43, when I was transferring a thawed 5 day blastocyst, using my own egg, I asked my new doctor what my odds were of being pregnant (please note, pregnancy not live birth). Even though I’d seen the fertility graphs I figured my chances would somehow be better than the average because unlike some patients my age I was both responding to drugs and producing blastocyts: “Pollyanna Juggernaut could do amazing things with the numbers.” In reply to my question about odds, the doctor said “A Day 5 blastocyst has about a 40% chance.” I took that to mean I had a 40% chance of being pregnant – but later I discovered the 40% figure was for women of all ages. I hope that illustrates how statistics can be malleable…

What changes do you think we could make to try to ensure that fewer women suffer the kind of anguish you went through?
That’s a good question and I don’t have any easy answers. I wonder if there couldn’t be a buffer between women – especially older women – who are prepared to do almost anything to have a child and the clinics who are prepared to put patients through almost anything even though there is no guarantee of a successful outcome, far from it. In Australia a well-respected doctor put a patient through 37 cycles. 37! He had no qualms about that since she did end up with a child. But what if she hadn’t? I’m not sure what happens in the UK but in my case it was my General Practitioner who referred me to the fertility clinic. My GP never asked how my treatment was going. I wonder if GP’s could step in as a buffer, walk patients through the facts and figures, help decide whether or not to do an experimental protocol advocated by the clinic that will cause physical harm but has limited evidence of benefit, to basically serve as a ‘reality check’. There’s a great deal clinics can do to change…For example, during an embryo transfer my doctor pointed to an image of the blastocyst on the ultrasound screen and said ‘That’s the baby’. At the time, I thought it generous and I was touched that the doctor might be the only person in the world who would ever refer to ‘my baby’ but in retrospect the comment – that’s the baby – only heightened my intense desire for a child.

Choosing a fertility clinic

800px-Woman-typing-on-laptopThose of you who came to my talk at the Fertility Show will know that I promised to put up some notes from my talk on the blog this week – here they are at last!

The HFEA website

We begin with the HFEA website which is the best place to start. You can search for your local clinic using the Choose a Clinic tool – just type in your postcode or local region and you will get a shortlist of local clinics.

You can see more about the treatments they are licensed to carry out, services, facilities and staff. It will tell you whether they take NHS patients, the opening hours, whether there is a female doctor and links to a map.

Of course, the one thing you really want to know is how likely am I to get pregnant there? Which is the one thing no one can honestly tell you. The HFEA publishes success rates for all licensed clinics, but they may not be as clear cut as you imagine. Most clinics have broadly similar success rates and the majority of clinics in UK have success rates which are consistent with national average. Don’t forget, the patients treated affect the success rates.

You may want to look at the success rate for someone of your age, and make sure you are comparing like with like. The HFEA also gives the multiple birth rate, but a high rate doesn’t suggest a good clinic which has your best interests at heart. Naturally multiple births occur in 1 in 80 of all pregnancies, it’s around one in six after IVF. That may sound positive, but in fact multiple birth is the single biggest risk after fertility treatment. 1 in 12 multiple pregnancies ends in death or disability for one or more babies, and it is also more risky for mothers. Good clinics should not have very high twin rates. A really good clinic will have good success rates and low multiple rates.

When it comes to success rates, don’t get bogged down in fairly small percentage differences – in general they’re probably not that meaningful.

NHS Funding 

You will also want to know if you qualify for NHS funding. The guideline from NICE recommends 3 full cycles (fresh and transfer of any frozen embryos) for women of 39 and under and one full cycle for women of 40-42 who have had no previous treatment, who have a good ovarian reserve and who have spent 2 years trying)

In England funding comes from your local CCG (Clinical Commissioning Group) not your clinic so you need to find out their rules – and unfortunately they all make their own up as the NICE guideline is only a guideline. You can find out what your CCG is offering by visiting the Fertility Fairness website. The CCG will also set eligibility criteria – and each will have their own

Location 

Think about how close the clinic is to your home or workplace. Be realistic as a long journey is fine as a one-off, but think about doing it three or four times a week. Ask the clinic how often you will have to visit as some will want you in every day of the cycle, but others just a few times a week.

Think about how you will get there and how long the journey will take? Are you going to use public transport or drive? Will you be travelling in the rush hour? Can the clinic offer early morning appointments or will you need to take time off work? Will it fit around your job?

Cost 

Fertility treatment prices are not regulated and can vary hugely. Clinics that charge more are not necessarily better so do look into prices. The headline figure on clinic websites is rarely the total cost of treatment  – ask instead what the average person actually pays

The HFEA does require clinics to offer you a personalised costed treatment plan, but check what is included – drugs, counselling, scans and bloods, freezing and storing spare embryos, follow-up consultations etc.

Unproven treatments 

Many clinics offer unproven additional treatments. Many are not scientifically proven. The HFEA has advice on some of these . Additional treatments can be very expensive, and you may risk paying a lot for something that may not make a difference – and may even bring additional risks.

Support

Will there be someone you can call with any problems/concerns? You should be given a contact to call if you are concerned about anything at any time. And is counselling included in the cost of treatment? You may think you don’t want or need it, you may may find it helpful once you have started treatment. So check if you are going to have to pay for counselling, and if it is included, ask how many sessions.

Is there a counsellor based at the clinic? Some counsellors also offer telephone counselling and you can find a list of fertility counsellors on the British Infertility Counselling Association website. Is there a patient support group?

Waiting 

How soon could you get an appointment and when could you start treatment if it is recommended ? How long are waiting times for donor eggs or sperm? At some clinics,
there are still waiting lists for donor eggs and sperm but others have plenty of donors, so do check.k

Do you like the clinic?

I think this is far more important than you might initially think.

Talk to anyone else you know who has been there, look online for views – but remember that everyone is different. Go to any open days or meetings for prospective patients and think if the clinic feels right for you. It may sound ridiculous, but it matters.

Trust your instincts, and don’t hink they don’t matter. Make sure that you have chosen a clinic that you will be happy with.

Treatment isn’t always easy, but it is certainly much easier if you are being looked after by people you like and trust.