Can you help with a survey?

The National Institute of Health Research wants to fund some research to compare different therapies offered to women with premature ovarian insufficiency (POI), also called premature ovarian failure or premature menopause.

They are a team of doctors, researchers and women with personal experience of POI who are signing a trial to compare the treatments. To ensure that the trial is all right for  women who have POI, they are seeking your opinions. The survey should take no more than a couple of minutes to complete. Your answers are completely anonymous and it is really important as it will help improve treatment for women with POI in the future. You can find the survey here 

Natural killers or your body’s peacemakers?

Most people having fertility treatment are keen to absolutely anything they can to try to boost their chances of success, and sometimes that can mean paying for additional treatments as well as their IVF or ICSI which they hope can increase the likelihood that they will get pregnant. The problem with many of these treatments is that there is not yet sufficient evidence to be able to say that they will do what they claim to do, but fertility patients sometimes decide to have them anyway.

One treatment offered by some clinics is related to the level of natural killer (NK) cells in a woman’s body – the very name suggests that having a lot of these must inevitably be a bad thing. If you are considering having your NK cells tested as part of your fertility treatment, you may be interested in reading this article which explains the growing understanding that at least some of a woman’s natural killer cells act as peacekeepers, preventing other immune cells from attacking the fetus. They also produce chemicals which promote the growth of the baby and blood vessel connections.

You can read more about all fertility treatment add-ons on the HFEA website, where each of the different treatments has been ranked according to the latest scientific evidence and given a traffic light grading.

Fertility and wellbeing event in Wales

If you’re based in South Wales or live close by, you may be interested in the Fertility Network UK fertility and wellbeing event organised for Saturday 1st December in Cardiff. There will be more than 20 exhibitors and expert advice. The first 100 people at the event will also get a free delegate bag.

There will also be some speakers at the event. BBC Wales’ Lucy Owen will share her personal experience of fertility problems, Fertility Network UK’s Anya Sizer will talk about coping with Christmas, Tricia Lowe from Good Nutrition First will be talking about staying healthy at Christmas and singer Elin Fflur will talk about her experiences of treatment.

You can find out more from the Fertility Network UK website.

Adoption and IVF – claims and counter claims

One of the most common pieces of “helpful” advice you’ll hear if you are open about experiencing fertility problems is that you should consider adoption instead, “Why don’t you just adopt instead?” people will ask. They nearly always use the “just”, as if it’s some instant route to parenthood which you are wilfully ignoring. This often comes tinged with the suggestion that there is an inherent selfishness in wanting to have your own child rather than someone else’s – if you are going to need IVF to do it. You don’t hear the same people suggesting that those who can conceive without any problems and who have thee or four or five children of their own were selfish and should have considered adoption instead, but that’s another matter…

On Friday, Anthony Douglas, the chief executive of the Children and Family Court Advisory and Support Service (Cafcass), added fuel to the fire by suggesting that the growing success of IVF is responsible for the drop in potential adoptive parents, claiming that now few people will consider adoption as an option. Apparently In 1970s, there were 12,000 children were adopted in Britain every year but in 2017 there were just 4,350 adoptions. At the same time, there is a growing number of children in care.

It always strikes me as odd that when it comes to discussion about infertility and adoption, people seem to see adoption as some kind of solution for fertility problems. In fact, adoption should be about finding the best possible family for a vulnerable child rather than offering some kind of quick fix solution for a couple with fertility problems. Adoptive parents need to have a resilience and dedication to adoption that makes them very special people. Having a fertility problem doesn’t automatically give you those qualities. In response to Anthony Douglas’s suggestions, the head of one adoption charity said it seemed to be a “misunderstanding of the very essence of adoption”.

In 1978, we were in a very different place, and not just because IVF wasn’t around. For a start, there were far more newborn babies without siblings who needed adoptive families. Now it is very rare to be able to adopt a newborn, and in 2012 there were only 76 babies adopted so very few parents will be caring for an adopted child from the start of his or her life. More than three quarters of children waiting to be adopted are over 2, and they have often experienced many difficulties and challenges in their lives. More than 60% are in sibling groups so parents would not be adopting one child but two or more. Around a third of the children needing adoptive parents are from ethnic minority backgrounds.

The other huge issue around adoption is the lack of support which many adoptive parents report, and they often feel they are unprepared for the challenges adoption can bring. A survey by the charity Adoption UK last year found that more than a quarter of families reported being “in crisis” and two thirds of respondents said their child had displayed aggressive behaviour towards them. At the time, the chief executive of Adoption UK, Dr Sue Armstrong Brown, said “We’re talking about trauma-fuelled violence from children who will have witnessed the unthinkable in their early lives. Adoption is not a silver-bullet – these children’s problems don’t just disappear overnight. Children who have suffered the trauma of abuse or neglect have experienced the world being an unsafe and dangerous place. The child’s violent behaviour reveals extreme distress and a need to feel safe and protected. These children need particular parenting techniques and access to therapy to overcome early childhood trauma, and they may reject any attempts at parental affection or management of their behaviour.”

There may be some people with fertility problems who are excellent adoptive parents, but anyone with any experience of adoption will know all too well that pairing up traumatised young people with adults scarred by infertility is not a one-size-fits-all solution to either problem.

The Long Road to Baby

Hearing other people’s stories can be so helpful – and heart-warming – when you are trying unsuccessfully to conceive, so thanks are due to the BBC’s Sophie Sulehria and her partner Johnny for charting their fertility story in a BBC Radio 4 podcast. Titled The Long Road to Baby, it bills itself as post-IVF exploration into the alternative ways to become parents. The ten episodes cover a range of topics including unsuccessful IVF, donor treatment, adoption, fostering and living without children.

Sophie has become a leading voice in the fertility world, and her willingness to speak openly about her own experiences has been hugely helpful to so many people struggling with their own fertility issues. Knowing that this can – and does – happen to anyone, including people in the public eye, makes all the difference to those who are feeling isolated and alone.

If you haven’t already, have a listen to the Long Road to Baby – it comes highly recommended!

You are not alone

One of the most difficult things about living with fertility problems is the loneliness and isolation you can feel as everyone around you seems to be getting pregnant effortlessly. If you don’t tell other people what you are going through, you get questions about when you are going to have children and warnings that you don’t want to leave it too late. If you do tell people, you can end up with lots of advice you could do without (“why don’t you just relax/get a dog/go on holiday…”).

Last night, I facilitated a fertility group for the charity Fertility Network UK in South East London and it really struck me, as it does every time we meet, how beneficial it can be to spend some time with other people who really understand how you are feeling and who know what it is like. Fertility Network has groups meeting across the UK, mainly run by volunteers like me, which offer a haven for anyone experiencing fertility problems. It’s a unique opportunity to be with people who share similar experiences and to be able to talk openly and honestly about how you are feeling.

It’s National Fertility Week and there’s lots of work going on to raise awareness about many important fertility-related issues, but one of the most important messages for me is that you don’t need to go through this alone. There are opportunities to meet other people who can offer support, and the groups aren’t miserable or depressing, but rather an opportunity to help yourself to feel less lonely. There are 3.5 million people living with fertility problems in the UK and meeting some of the others may be just what you need.

Coping with unsuccessful fertility treatment

New research has been investigating how people react to unsuccessful fertility treatment and how best to them. Although such comparisons are difficult to make, going through unsuccessful fertility treatment is thought to have a worse impact on your mental health than  divorce and is almost comparable to the impact of bereavement.

When research participants were asked to share their experience, they talked about an intense grief made of profound pain and feelings of loss, sadness and emptiness, which was sustained over time and only very progressively tended to diminish and become bearable. They also said that it was hard to stay connected with the people around them who have children and to discuss their situation with others, and this resulted in feeling very isolated. In addition, most people perceived to be abandoned by their fertility clinics and expressed a need for psychosocial support.

We now know that with time, around nine in every ten people are able to let go of their desire for children and rebuild a happy and fulfilling life. What we haven’t know, is what the things that helped those people to come to terms with their unmet desire for children.

To investigate this adjustment process, Dr Sofia Gameiro from Cardiff University worked with the patient support charity Fertility Network on an online study aimed at answering two key questions. First they wanted to find out whether this grief and the adjustment process is experienced by everyone who is unable to have the children they wanted or is unique to those who had had fertility treatment. Second, they want to investigate the mechanisms which helped people to adjust and could be used to support others.

There were 420 responses to the survey and the vast majority were women with an average age of 35. The survey results showed three key things that help people come to terms with their unmet desire for children;

  • Making meaning of the experience
  • Accepting the reality
  • Refocusing life on other fulfilling goals

The results from this study are in the process of being written up for publication and have been crucial to the development of educational and supporting materials that Fertility Network UK is making available in its More to life website, which is specially dedicated to support those facing the challenges of childlessness. The materials will be launch on Tuesday 30th October and can be accessed here.

New restrictions on IVF funding

It’s National Fertility Awareness Week and today the campaign group Fertility Fairness has released an audit which has found new restrictions on IVF funding. The survey covered all the Clinical Commissioning Groups (CCGs) in England and found that 80% are failing to follow the NICE guidance which says that all eligible couples under the age of 39 should be offered 3 full cycles of IVF treatment.

Many are also setting new criteria to limit eligibility for treatment. Despite the fact that neither male age nor weight affect the success rate of IVF, more than a quarter of CCGs have decided to use the male partner’s body mass index (BMI) to decide whether a couple can access NHS treatment, and 8% no longer offer NHS funding if the male partner is 55 or over. Around one in four CCGs also use AMH or antral-follicle count to check a women’s ovarian reserve (an estimate of the number of eggs in the ovaries) to decide whether she is eligible for IVF. The NICE guidance gives some guidance on levels at which these may be helpful to assess how a woman may respond to the drugs used in IVF to stimulate the ovaries, but there is no suggestion at all that this might be used to decide who should be eligible for treatment.

Consultant gynaecologist and Fertility Fairness committee member Raj Mathur, said: ‘ Male age and BMI are not in the NICE guidance as criteria for IVF and there is no strong evidence of impact on clinical outcomes of IVF. AMH and antral follicle count are in the NICE guideline as predictors of ovarian response, but NOT as predictors of the chance of having a baby through IVF. Commissioners are making unjustified extrapolation in using them for rationing.’

The audit found that

  • 3.6% of CCGs have removed NHS IVF entirely
  • 40% do not offer a full IVF cycle, limiting the number of frozen embryo transfers
  • 20% offer one full IVF cycle, transferring all fresh and frozen embryos
  • 23% offer two IVF cycles.
  • 13% offer three IVF cycles.

In the last two years, 30 CCGs have reduced NHS fertility services, and one in ten CCGs is currently consulting on cutting or removing NHS fertility treatment.

Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shocking to see CCGs introducing their own ‘access to IVF’ criteria, as well as reducing the number of IVF cycles they offer. It is not the CCG’s job to decide the criteria for accessing NHS fertility services. NICE has accessed the evidence in its guideline and developed access criteria for NHS patients and they do not include male BMI, male age, a woman’s AMH level or whether or not a couple has a child from a previous relationship. What criteria will CCGs introduce next; star signs and shoe size? CCGs need to remove their extra ‘access to IVF’ criteria now.’

Aileen Feeney, co-chair of Fertility Fairness and chief executive of leading national charity Fertility Network UK said: ‘ Fertility Network is extremely concerned about the effect that reducing access to NHS IVF has on already distressed patients. Infertility is a devastating disease causing depression, suicidal feelings, relationship breakdown and social isolation; removing the recommended clinical help or making it harder to access is cruel and economically short-sighted. Access to NHS treatment should be according to medical need and not your postcode. We urge anyone affected to join Fertility Network’s #Scream4IVF campaign calling for fair access to NHS IVF in the UK; with your help we can reach 100,000 signatures and hold a debate on the issue at Westminster. Sign the petition at www.scream4IVF.org and share your #Scream4IVF during Fertility Week.’

Have you had your smear test?

Figures released today by Public Health England show that there has been a drop in the number of women having regular cervical screening tests. They show that around three million women under 50 have not had a smear test for more than three years, and another million women in the 50 – 64 age bracket have not had a test for more than five and a half years. These rates are at their lowest levels for almost twenty years.  This matters to anyone worried about their fertility as treatment for cervical cancer may leave you unable to have children in the future.

It is vital that we all go for regular smear tests as cervical cancer as the screening test is estimated to save more than 4,000 lives every year. Having regular screening means that if there are any unusual changes in the cells in your cervix, this will be identified at an early stage and if you need treatment, it can be given early to stop cancer developing.  You can read more about cervical cancer screening on the NHS website and there is information about screening and cervical cancer on Jo’s Cervical Cancer Trust and the Eve Appeal’s websites.

Seasonal sperm

New research from the United States has found that men produce better sperm in the spring and autumn, although the reasons for this remain unclear. A big study analysed sperm samples from more than 29,000 men over a period of 17 years, and found that there were more moving sperm in the spring and more normally-shaped sperm in the autumn.

The researchers, from Icahn School of Medicine in Mount Sinai in New York presented their research at the annual conference of the American Society for Reproductive Medicine in Denver. They have suggested that the milder weather might have something to do with this as the sperm will stay cool but men are likely to be more physically active and that they may be less likely to be drinking too much alcohol than in the summer or at Christmas. As it takes three months to produce sperm, it is not entirely clear what the causes may be – but the researchers make it clear that more research is needed to be able to confirm that their findings would have an impact on the chances of a successful pregnancy at different times of year.