I’ve just been reading a fertility forum where there are a number of posts which are apparently from people who’ve had absolutely marvellous treatment at an overseas clinic. There was something about them which sounded rather odd to me and not quite like the way fertility patients usually write about their treatment, so I checked the forum for other posts about the same clinic and there were a whole series of similar posts from different people, all discussing what wonderful experiences they’d had – but also all making exactly the same slightly unusual errors in their English and using the same phrases. Some even had usernames that were similar, and they had all been successful after repeatedly unsuccessful cycles elsewhere but were returning to the forum to tell others about their treatment.
It’s always helpful to read about other people’s experiences, but reading reports online is never quite the same as talking to real people and it is worth being a little cautious, particularly if something doesn’t sound quite right. I sometimes get comments on Fertility Matters which begin as a discussion about a post and then suddenly veer into an advertising pitch and are clearly not from a genuine fertility patient. I just delete them all, but the online boards are sometimes used for promotional purposes too and it is a good idea to bear that in mind.
Do you think clinic staff get it right when it comes to breaking bad news to fertility patients? And how do you think that could be improved? Are staff too blunt? Or not blunt enough?
I’ve met so many patients who have felt that things weren’t always handled in the best way, and I’d be keen to find out more about where you think things may go wrong – and what you think might work better.
A new survey of fertility patients looking at overseas treatment carried out for Fertility Network UK and the website Fertility Clinics Abroad has unsurprisingly found that cost is the major reason why people travel for treatment. Of those who responded to the survey, nearly 80% said fertility treatment in the UK cost twice as much as they were willing or able to pay and 68% said that they would travel for treatment because IVF overseas was generally cheaper.
When people first started travelling overseas for fertility treatment, it was often to access donor eggs but according to this survey most of the respondents were using their own eggs for IVF treatment abroad. The survey found that people believe that treatment can often be offered more quickly abroad. There was also a perception that the standard of care was better overseas with clinics offering a more personalised approach.
Interestingly many were also attracted by the apparently high success rates overseas, but some respondents had noticed that these rates could be confusing and misleading. A majority had said a centralised database of all overseas clinic success rates would be welcome but it would be very hard to verify these rates. Some overseas clinics claim success rates of more than 80% for women using their own eggs for IVF, and it is important to be clear that these rates are not comparable with the figures you will get from a UK clinic as they are using different criteria, are not always including all the patients treated at the clinic and may be giving rates for positive pregnancy tests rather than for live births.
Almost a quarter of respondents wanted to go overseas because they would have access to anonymous donors and it would have been very interesting to find out why they felt this was an advantage – did they feel it was linked to a larger pool of available donors or was it the anonymity itself which was attractive, and if so why. So, a survey which provides some interesting information – and also raises many questions! You can read more details about it here
A fertility clinic in the US has recently held a lottery offering a number of free cycles of IVF – which was a good PR exercise for the clinic itself. I’ve just been reading an article about this and was surprised to discover that the “free” cycle didn’t actually include the cost of any drugs (which, as anyone who has been through treatment will know, are extremely pricey). Nor did it include any additional treatments such as PGD or sperm freezing should they be needed. Entrants also had to be under the age of 43.
The lottery was drawn live on Facebook, 30 winners from the 500 or so entrants which seems a small number given what was on offer. But perhaps not, as they also had to agree to forfeit their right to anonymity as the names and locations of winners would be announced during the live draw.
This was carried out for the US National Infertility Awareness Week and whilst the sentiments may appear honourable, the idea of winners having to agree to let the world know about their fertility problems is something I struggle with – as is the concept of a prize which involves spending hundreds of pounds…
Today is International Nurses’ Day, so I thought I’d dedicate this post to fertility nurses. When people think about different fertility clinics, there’s always a focus on the consultants when in fact although they are in charge of a patient’s care, they may do very little of the day-to-day care during a cycle of treatment. It’s often the consultants who attract patients to one clinic or another, and yet it may be the nurses who can make a real difference to how you feel during your fertility treatment.
Different clinics have different ways of working, but nurses may carry out scans and check bloods as well as doing much of the more practical dealing with fertility patients. More often than not, a fertility nurse will teach you how to do your injections, will talk to you about how you are feeling, will be there at the end of the phone as a first port of call for your questions or queries. It’s also the fertility nurses who may notice when you are finding it hard to cope and who may suggest a session with the clinic counsellor.
So today, let’s say thank you to the fertility nurses who do so much to help fertility patients but take so little of the credit…
Every so often there’s an article like this one in today’s Guardian, about “twins” born years apart… The writer of this piece has a son and daughter born as a result of one fresh IVF cycle and a further frozen embryo transfer from the same batch of embryos.
It is a fortunate, yet far from uncommon, experience after fertility treatment, but it doesn’t make the children “twins”. Twins are two babies who are carried together and born at the same time, which these children were not. They are siblings rather than twins.
If you’re trying to conceive, you will be aware of your ovarian reserve but when you are starting out on your fertility journey, this isn’t something you will have come across before. Our potential to produce eggs declines as we get older, but the rate at which this happens is different for everyone – so some women may be diagnosed with a low ovarian reserve in their thirties or even twenties, which often comes as a real surprise as there may be no other signs of any decline in fertility at all.
If you want to know about your ovarian reserve, I was interviewed about the emotional impact by Allie Anderson for an article for NetDoctor the other day which you can read online here. It is important that we talk about this issue more often and more openly. Fertility specialists may suggest using donor eggs if they feel the ovarian reserve is so low that IVF is unlikely to be successful, but for women this may seem a huge and unexpected step and is certainly one which needs thought and counselling.
Anyone who is using donor eggs or sperm will find it useful to contact the Donor Conception Network who can provide information, help and support.
I owe Diane Chandler a huge apology as I’ve been meaning to review her book Moondance for months – and it’s a novel that will resonate with many fertility patients. We should always welcome novels about fertility problems and IVF because they really do help to normalise what can seem a very lonely experience, and also educate other people about the realities of what it’s like not to be able to get pregnant.
In Moondance we follow Cat and Dom through their attempts to conceive, fertility tests and the crashing ups and downs of treatment. There is much that will be familiar to anyone who has been through this themselves, especially in the way that treatment takes centre stage and comes to dominate everything else in life. Cat is not a sympathetic or likeable character – almost unbelievably self-centred, arrogant and selfish – which makes it hard to feel much in the way of empathy at the start of the novel. And yet seeing how someone so obsessed with controlling everything in their life is completely thwarted by their inability to conceive adds strength to the portrayal of the nature of infertility.
This is the sort of book that you sit down with and find yourself speeding through – despite being a thick book it’s a fairly quick read. There are a couple of niggling inaccuracies, for example, a type of post-coital sperm test which is medically impossible, but these don’t detract from what is otherwise a detailed account of the realities of treatment.
Thanks to Carole Bonner, Chair of Croydon Council’s health and social care scrutiny sub-committee, and her fellow members who have called on the government to stop cuts to all funding for IVF in the area. They sent a letter to the Secretary of State for Health, Jeremy Hunt, asking him to look at the decision to cut all funding made by the local Clinical Commissioning Group.
It is the first time that a decision has been challenged in this way and the Committee was concerned that the impact of the decision to remove access to fertility treatment would mean that those in the most deprived, low-income areas will be unable to afford to have IVF. A consultation carried out locally by the Clinical Commissioning Group showed that 77% of almost 800 respondents thought the funding should be retained.
Councillor Carole Bonner said “We’re making this referral because of the potential long-term adverse health effects the removal of IVF will have on Croydon residents. Not only can infertility result in family breakdown and the ending of relationships, it often has an impact on the mental health of those affected. A comprehensive study was carried out by Middlesex University and the Fertility Network that showed a clear correlation between infertility and depression, with 90% experiencing depression. The committee is acutely aware of, and has sympathy for, the CCG’s underfunding and the inconsistencies of the funding formula when compared to similar authorities. However, we feel that the effects of the withdrawal of IVF funding in Croydon are not in the best interests of the borough’s residents.”
Whatever the outcome, it is heartening to see a local Council appreciating the huge impact that cutting fertility services can have for a relatively small saving – so thanks to Croydon and let’s hope that others are inspired to follow their example.
For most people, it’s probably the worst part of an IVF cycle – the notorious 2ww when you get to spend a fortnight (which seems to last about ten years) on tenterhooks, worried about everything you do and don’t do in case it affects the chances of a positive outcome. One of the most frequently asked questions is what you should and shouldn’t do during this time.
You will find all kinds of advice from all kinds of experts about activities, diet and supplements during the two week wait. There are those who advise that you should take the time off work and do as little as possible, spending the first day or two lying on the sofa. Others may advise going back to work right away to try to keep your mind occupied and suggest that it’s best for your mind and body to keep active and busy. I’ve heard of people drinking pints of milk and others avoiding dairy products. There are women who don’t take baths because they might overheat, and others who are lying around with hot water bottles on their stomachs.
If you visit any fertility forum, you will find it awash with questions and suggestions about the two week wait. Some are quite bizarre – a quick trawl produced all the usual stuff about eating pineapple core and brazil nuts, but the idea that you shouldn’t eat anything uncooked and that you need to wear socks 24 hours a day were both new ones to me!
I will always remember the nurse who cared for us during our first IVF cycle telling me that any rules about what not to do during the two week wait weren’t really set because they would cause an embryo not to implant or induce a miscarriage but rather because they were things that fertility patients often worried about. So, having a glass of wine during the two week wait is not going to stop you getting pregnant, but if your treatment doesn’t work and you’ve had a glass of wine, you are likely to question whether it was to blame.
I think the bottom line with all of this is that if you are sufficiently worried to be asking whether it is OK to do something, it’s probably a good idea not to do it. Two weeks seems a lifetime during the 2ww, but in reality it isn’t a long period to have to give anything up. There are no hard and fast rules, but following your own instincts and doing what feels right for you rather than allowing yourself to be driven to distraction by conflicting suggestions is probably the best advice anyone can give you about what to do and not to do.