Could scientists have found a cure for PCOS?

It’s incredibly common, but little has been known about what causes polycystic ovary syndrome (PCOS). Now scientists in France think they may have found the solution. They believe PCOS may be triggered by exposure to high levels of Anti-Mullerian hormone (AMH) in the womb which may overstimulate brain cells and raise the level of testosterone in the body.

Experimenting on mice, the researchers were able to reverse the effect of the AMH by using a drug which can be used to control hormones and they are now planning to trial this in women. If it works, it could be a solution to restore ovulation in women with POCS.

PCOS is a very common condition, and women who experience it have a number of symptoms often may include irregular periods, excess body hair, weight gain, oily skin and cysts on the ovaries. Many, but not all, experience difficulties trying to conceive and PCOS is often a cause of fertility problems. You can read more about the new research in New Scientist here.

Why exercise is good for you

A new study suggests that “vigorous” exercise may be linked to an improved chance of getting pregnant, but that more gentle exercise doesn’t seem to make the same difference. So, what counts as “vigorous”? Apparently that’s exercise like jogging, running, football or aerobics which leaves you out of breath, and you have to do more than four hours a week!

You can read more about it on the NHS Choices website – and the results are interesting. If you are obese, the vigorous exercise thing doesn’t work, but instead more moderate exercise such as walking does. As NHS Choices points out, assessing how likely it is that these results are actually widely applicable and correct can be difficult as the results were slightly odd. It isn’t clear why exercise only counts if you do more than four hours a week, or why walking makes a difference to obese or overweight women but not to any others. It is also not clear what they women ate, or whether their weight changed during the study as these factors could make a difference – as could any existing fertility problems so it may be that one of these other factors was in fact responsible.

It does, however, add to the growing body of evidence that keeping active is a good thing!

For anyone pregnant after fertility treatment

I’ve heard from so many people recently who are pregnant after fertility problems who are full of anxiety and feel their pregnancies, which ought to be joyful, are being tainted by the worries from the time spent trying to conceive. Women then blame themselves once again for not being “normal”, but this is a perfectly understandable response to finally finding yourself pregnant after fertility problems. You may find it hard to have faith that things are going to be all right when you have become so accustomed to them not being all right.

It may be helpful to know that there is a closed Facebook group which I look after for the patient charity Fertility Network UK which is just for people who are pregnant after fertility problems which you can find at https://www.facebook.com/groups/Pregnancyafterinfertility/

The other resource which may be helpful is a book I wrote because I felt so strongly about the lack of understanding for people who are pregnant after fertility problems. It’s called Precious Babies – Pregnancy, Birth and Parenting after Infertility and you can buy it from Amazon. It goes from the positive pregnancy test right through birth and early parenthood to interviews with adults conceived by IVF and I hope it helps you realise that you are not alone and that others feel the same way after fertility problems.

 

Thinking of having treatment overseas?

If you are considering going abroad for fertility treatment, you may be interested in this article I wrote for a supplement for The Times earlier this week.

For many people, going overseas can be a cheaper option, and many return with positive stories about their experiences, but you do need to be aware of the facts and understand the differences you may find if you choose to have treatment outside the UK.

There are some great clinics across the globe, but there are also some that are not quite so great and you don’t have the protection that you have here in the UK of knowing that all  clinics offering IVF are licensed and regularly inspected by the Human Fertilisation and Embryology Authority. As you don’t have that luxury with clinics elsewhere, you do need to make sure you do your homework and research as much as you can about the clinic and the country to ensure that you are left feeling that you did the right thing in choosing to travel for treatment.

New fertility group for South East London

I’m going to be running a new fertility group for Fertility Network in Greenwich in South East London which you are welcome to join! We are having our first meeting on the evening of Tuesday March 27. It will be great to see you if you are able to come along!

I first went to a group when I was going through IVF myself and found it hugely helpful to meet other people who understood how we felt. I was a bit uncertain about going along – I didn’t think I was the sort of person who went to group meetings – but in fact it wasn’t gloomy or depressing or any of the other things I’d expected. If anything, it was actually quite uplifting to be in a room full of people who weren’t going to stat asking questions about when we were going to have a baby and why we were leaving it so late…

I’ve run a number of different fertility groups over the years since then and have seen at first hand the benefits they can bring. So why not come along and join us and find out for yourselves…

You can join our brand new Facebook page to find out more or you can get in touch via the contact page here – and hope to see you on the 27th.

Endometriosis Awareness Week

It’s Endometriosis Awareness Week organised by the charity Endometriosis UK. They are aiming to increase understanding of endometriosis particularly among women who may not yet have a diagnosis. It takes a shocking average of seven and a half years in the UK to diagnose a woman with endometriosis.

The charity’s website is full of useful information about endometriosis and explains the symptoms which can include painful, heavy, or irregular periods, pain during or after sex infertility, painful bowel movements and fatigue. Around one and a half million women in the UK are currently living with endometriosis which can affect anyone of childbearing age.

There are lots of ways to get involved if you are interested, and you can organise or take part in Endo the Night which is a fundraising initiative aimed at helping to support the charity. Meanwhile, if If you want some quick information on endometriosis, you may also find this helpful – an article about endometriosis with tips leading fertility specialist Anthony Rutherford.

Fertility Education

Congratulations to the brilliant team at the Fertility Education Initiative for getting the subject of fertility education on the agenda. It was fabulous to see the subject covered on the front page of The Times, and also covered in the Sun and the Mail. The Fertility Education Initiative’s Jessica Hepburn and Professor Joyce Harper even featured on the Victoria Derbyshire show talking about this.

It’s such an easy subject to misunderstand or misinterpret – and people are often worried that talking to young people about infertility will mean they assume they don’t need to worry about contraception. In fact, this couldn’t be further from the truth as fertility education is about ensuring young people really understand and are fully informed about their own fertility. All too often, women who find they’ve left themselves a fairly small window of opportunity to conceive feel that they weren’t fully informed about their own reproductive clock or about the limits of fertility treatment.

You can read more about the Fertility Education Initiative here where you can also find answers to some common questions, and see a video of the Fertility Education Initiative’s Health Summit Choice Not Chance held in 2016.

Free IVF cycles

Since 2009, the Lister Fertility Clinic has been offering a small number of free IVF cycles each year to try to help people who are unable to access NHS-funded fertility treatment. The cycles are offered in conjunction with the charity Fertility Network UK and there are some criteria for entering into the draw for the free cycles.

You have to be a UK resident under the age of 42, with a cause for your fertility problems. Your BMI must be in the normal range and you can’t have any children from your current relationship. You can’t have been sterilised in the past and you can’t have had a free cycle at the Lister before. There are also some restrictions on the type of treatment you can have, which can’t include egg donation.

You need to send your entry to Fertility Network UK – and you can find the details here

 

Pineapples…

Pineapples are much-discussed by those trying to conceive as their cores contain the enzyme bromelain, which is a natural anti-inflammatory which some believe could help implantation.

Now, the online fertility magazine ivfbabble is using pineapples as part of a campaign of solidarity for those experiencing fertility problems.  Their “stronger together” campaign is a brilliant idea which aims to bring people together and to make us all realise quite how common fertility problems and that we are not alone.

You can read more about the pineapple pins here – www.ivfbabble.com  and you can buy the pins directly on Amazon  or from ivfbabble and any profits from the sales will be donated to Fertility Network UK.

 

Add ons – do they add up?

I gave a talk at The Fertility Show on Saturday about add ons, and promised to put my notes on the blog, so these are some of the key points, and links to useful sources of information.

What are add-ons?

  • They are additional treatments which your clinic may offer on top of IVF/ICSI
  • They are new or emerging treatments and there may be limited evidence about how effective they are
  • Some may have shown some promising results in initial studies but may not be proven to improve pregnancy or birth rates
  • Some clinics offer lots of add ons and may give you what looks like a shopping list of additional treatments to choose from. Some don’t offer them. This isn’t an indication of how good or forward-thinking a clinic is – some fertility experts may not be convinced that some add ons are worthwhile or safe.
  • Some clinics charge for add ons, others may include particular add ons in the cost of treatment because they think they make a difference and believe they should be part of IVF.
  • Add ons can be expensive and may substantially increase what you pay for your IVF

The Human Fertilisation and Embryology Authority (HFEA) has a list of some of the more common add ons you may be offered on their website, and a grading system for them

They include:

  • Assisted hatching
  • Artificial egg activation
  • Elective freeze-all cycles
  • Embryo glue
  • Endometrial scratch
  • Intrauterine culture
  • Pre-implantation genetic screening (PGS)
  • Reproductive Immunology
  • Time-lapse imaging

It can be difficult to know what to think about these new treatments, and the HFEA carried out patient survey to try to find out what people thought. The views ranged from those who were very strongly in favour of add ons to those who felt patients should not be offered treatments that we don’t know work. The overwhelming feeling from patients was that they didn’t want to miss out on something which might make a difference, but that this had to be balanced by the need to protect their interests.

Assessing the evidence is key and you want to know is:

  • What evidence there is about how effective something is
  • What evidence there is about whether it is safe
  • Does it carry any risks
  • How much does it cost

How do you assess the evidence?

As lay people, when we hear about evidence we may give any research or scientific paper equal weight, but in fact evidence isn’t quite as black and white as we may think.

 

The best scientific evidence comes from randomised controlled trials. In these trials, people will be divided into those who have the new technique or treatment and those who don’t in a randomised way. It is important when assessing evidence to look at whether the study included all patients or just a specific group. Sometimes research may have a narrow age range, or may have only looked at people with one specific type of fertility problem.

You should also look at the number of people included in the study. The most meaningful research will have involved a large group but sometimes you may discover that studies have taken place in one specific clinic and may involve tiny numbers of people.

Finally, check the outcomes. You want to look at studies where a healthy live birth is the outcome but some studies may stop at a fertilised egg or positive pregnancy test and this may not translate into an increase in births.

How the HFEA can help

The HFEA got together a group of leading scientists and fertility experts to look at all the existing research on each of the add ons, to assess it and to develop a traffic light system for add ons.

There is a green symbol where there is more than one good quality study which shows that the procedure is effective and safe.

A yellow symbol where there is a some evidence or some promising results but where further research is still required.

And a red symbol where there is no evidence to show something works or that it is safe

The decisions made by the group were then re-assessed by an expert in evidence to ensure every traffic light had been correctly assigned.

Green lights

Not one of the add ons mentioned at the start was given a green light to say that there is “more than one good quality study which shows that the procedure is effective and safe”

Red lights

There are a few red lights which means there is currently no evidence for assisted hatching, intrauterine culture, PGS on day three and reproductive Immunology. There may also be risks here too so do read the evidence carefully on the HFEA’s information page.

Amber lights

A lot of the add ons fall into amber where more evidence is needed. This includes endometrial scratch, freeze all cycles, egg activation, embryo glue, PGS on day five or six and time lapse.

For two of the add ons in this category, freeze-all cycles and endometrial scratch, there are big multi-centre trials going on at present in clinics across the United Kingdom. If you want one of these add ons, ask your clinic if they are taking part in the trial as you could end up getting the add on itself free of charge (this doesn’t cover the cost of the IVF/ICSI and you may be randomised into the other part of the trial and not get the add on, but it may be a good way forward if can’t afford to pay for the add on)

The cost of add ons

Some clinics offer add ons such as embryo glue or time lapse as part of a treatment cycle to every patient they treat. Others charge, and prices can vary hugely. There is often no discernible reason for wide discrepancies in price, so do look into this by finding out what a number of different clinics are charging for any add on you are considering.

Key questions

If your clinic offers you an add on, make sure you ask some questions first:

  • Why are you offering me this treatment?
  • What evidence is there that it works?
  • What increase in success have you seen with patients similar to me?
  • What are you charging and how does it compare to other clinics?
  • If you are charging more, why is this?

There are also some questions to ask yourself:

  • Are you happy with the evidence your clinic has given you?
  • Have you read the information on the HFEA website?
  • Can you afford to pay for it?
  • If you pay for it, would it affect your chances of being able to pay for another cycle if it doesn’t work?

Whatever you decide,make sure you are as fully informed as you can be about your treatment, and make sure you have read through all the evidence on the HFEA website which is there to help you to make an informed decision about your treatment.

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