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.
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
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.
I was delighted to be asked to join an Endometriosis UK support group last night to talk about fertility treatment and support. If you have endometriosis, I’d really recommended checking out Endometriosis UK and the excellent support they can offer.
The online group ran really smoothly and efficiently, and they also have support groups running across the country and an online community too. They have lots of incredibly useful information on their website, and do a lot of work to raise awareness of endometriosis, which often goes undiagnosed.
It was great to be able to talk to some of the members last night – inevitably our discussions came round to the postcode lottery of access to fertility treatment and we talked about the realities of going through IVF and getting support amongst many other things. Thank you to all at Endometriosis UK for asking me to join you!
All too often, there’s an assumption that secondary infertility is somehow less of a problem because you aren’t childless – and yet in fact the pain it causes may be different, but it is still a deeply distressing problem. Parents can feel guilty about not being able to provide a sibling for their child, and it can be very difficult to escape pregnant women and babies when you have a young child.
People sometimes put off seeking medical advice if they are experiencing secondary infertility having conceived without a problem in the past. In fact, there are no guarantees when it comes to fertility and it is actually more common to have a problem second time around than it is not to be able to have a child in the first place. Sometimes the difficulties you are experiencing are just down to the fact that you are older than you were when you got pregnant before, but there can be other medical problems which may have occurred in the interim. If it is taking you longer than you would have liked to get pregnant again, you should visit your GP in just the same way that you would do for primary infertility – so usually after a year of trying unsuccessfully or after 6 months if you are over 35.
If you’re concerned by the postcode lottery for fertility treatment, you can join the Fertility Network UK Day of Action on 25 March. You don’t have to go out marching anywhere, but just a few small actions can make all the difference
There are three ways you can join in –
Contact your MP, Tell them how the postcode lottery is affecting you and what is happening in your local area. You can find out more about how to find your MP’s contact details and what you might want to say in an email or letter here on the Fertility Network UK website.
You can tweet your support using the hashtags #IVFx3 #tellyourMP #righttotry
Fertility guidelines from the National Institute of Health and Clinical Excellence (NICE) say that if you should be able to access 3 full cycles of NHS IVF if you under 40 and eligible for treatment, An overwhelming 98 per cent of England’s 209 local clinical commissioning groups (CCGS) do not follow this guidance fully and have either cut the number of IVF cycles they offer and ration services by introducing additional non-medical access criteria, such as denying IVF to individuals if their partner has a child from a previous relationship.
Do join in and help your charity to help you to make a difference!
New research from the States suggests that women who are depressed are less likely to carry on with fertility treatment. The researchers from the University of North Carolina (UNC) screened 416 women with fertility problems, and 41% scored positive for depression although apparently more than half said that they felt depressed most or all of the time.
The research team found that the women whose screening test showed that they were depressed were less likely to carry on with treatment, and therefore less likely to end up with a pregnancy. You can see more about the research, which was published in the journal Human Reproduction, here
It isn’t really surprising that so many people who are having difficulty getting pregnant experience depression, but it is sad that some may end up avoiding or delaying accessing treatment that could help because of depression and anxiety.
Do you think there should be a cut-off age after which people shouldn’t have children? Or is it fine at any age at which it is remotely feasible? And is it right that we ponder this subject so much when it comes to women having children later in life, and yet barely raise an eyebrow when Mick Jagger has a baby at the ripe old age of 73?
The subject has been back in the news again after Dame Julia Peyton-Jones, former director of the Serpentine Galleries, became a mother at 64. It isn’t clear how she had her daughter, although we can be sure she didn’t use her eggs and that she may well have paid for a surrogate to carry the baby too. I know we all feel and act younger than our grandparents may have done at the same age, but she will be 80 by the time her daughter is 16 – and I can’t help wondering what it would be like for a 16 year old to have an 80 year old mother? Or what it would be like to be responsible for a teenager when you were 80?
Of course, the other problem with news stories like this is that they muddy the waters when it comes to NHS funding for fertility treatment, as many people seem to assume that it is the NHS which is footing the bill for older women to try to have babies. In fact, in most areas there is limited funding for women up to the age of 39, and often nothing at all beyond that. At most women of 40-42 will get one cycle, but if you are older, there is no likelihood of funded treatment.
The 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.
I’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.