Men: often overlooked in the feelings department

There are many articles, discussions and blogs about how fertility challenges (I hate the word infertility) affects women, but men and their feelings are so often overlooked. We tell people when faced with a challenge to "man up" sometimes and perhaps that accidentally points to one of issues - men are expected to be the strong, resilient and unemotional ones. So often times people take the view that they don't need support. To be otherwise is girly and, therefore, perceived as weak.

So let's start right here and now and correct the assumption - men feel the pain of struggling to conceive and stay pregnant too. I am not going to go into degrees of whether it is equal, more or less - in truth I don't know the answer but I suspect that it varies from case to case and that more often than not it is the same more or less. He wants to be a dad as much as the woman wants to be a mom. He doesn't suffer the biological interventions necessarily to the same degree, but he still feels.

I have observed many different approaches and reactions to the male component:

1) men are often less likely to discuss the challenges they are facing or emotions that they are feeling with friends or family: They are more likely to bottle up their feelings. This doesn't mean they don't feel though. The fact that they don't confide in someone can make it harder for them at times, I think. Even if they say it is their 'coping mechanism' they still struggle and suffer deep within. The lack of externalising one's own emotions sometimes can be harmful in the long run - I have seen the stress come out in physical manifestations of all kinds of ailments, such as stomach complaints, which at first blush you might assume are unrelated;

2) people often forget to ask the man how he personally is managing and coping: men often get asked by friends and relatives, particularly male friends and relatives, about how their other half is dealing with it. However, somehow people can be reluctant to ask men how they are feeling. I have no idea why this is. I know it frustrates the living daylights out of me, because to me it feels like not wanting to mention the elephant in the room. But it could also be more a reflection of the person asking in the first place: maybe they assume that because the exterior that they see is all calm and collected, that all is fine; may be they don't know how to deal with the answer they get, be it curt or an unexpected out-pouring of emotion; maybe it is because they feel that the listener will work out that it is implied from their silence?;

3) men are expected to be tough and not feel the impact of the challenge as much as women: I have observed men be told about pregnancies of persons close to them and be told they just have to accept it because 'it is what it is'. And then the person has to hear all about the details of those pregnancies with only rarely, if at all, being asked as to how they are doing, how they are coping, or do they need anything in the way of support. It may well be that the speaker does feel compassion deep within, but it isn't expressed. Being the complex creatures that we are, a man as much as a woman can struggle to interpret the silence and lack of acknowledgment - is it lack of interest, lack of sensitivity or simply that the person doesn't know how to deal with the 'softer' aspects of the situation? Is there an assumption that the man is less affected by the infertility so that he doesn't need the same level of compassion and sensitivity as a woman does?

4) the holiday season can be challenging to men too: parents may elect to visit their children with offspring ahead of their 'infertile' children. The 'infertile' children can be told they will be visited in the New Year. If the 'infertile' child is a male, there can be a habit of delivering the message in a very matter of fact way without any attempt to bolster feelings and self-worth as you would if speaking to a woman. Again, it may be that parents think that men don't need the 'soft language' or cannot deal with it. But you can never assume. It can hurt a man as much as a woman to feel excluded.

People struggle with how to respond or deal with women in this situation, so if there is one take-away, it is don't assume men are necessarily light years away from feeling the same as you might expect of a woman. They may just be better at hiding it. Boys do cry, even if they always don't shed tears or have emotional outbursts in the same way.

Now to finish here is the ultimate piece of irony, and one to dispel all stereotypes and generalisations that I/we may ever make about men! Along our journey of challenges so far, it has been a man who has been the best at managing the right balance of level-headed 'it is what it is' approach with compassion and support. The fact that they were expecting a child was relayed to us at the same time as everyone else, and the excitement and nerves wasn't hidden from us and yet at the same time, there was never a conversation where a portion of it wasn't dedicated to being supportive, offering help to us and asking how we were doing. It was recognising the bitter-sweet nature of the situation but with equal respect to each. We felt respected for the honesty and not being treated as social lepers and also respected and appreciated for not being forgotten in our times of challenge - and very appreciative that the person still found the time to think of us even when consumed with his own busy life.

Painkillers in pregnancy and male babies

http://theafa.typepad.com/theafablog/2010/11/painkillers-in-pregnancy-and-male-babies.html - Link to AFA posting

In the written press as well as on the internet these last couple of weeks, particularly in Europe, articles have started to appear, stating that common painkillers could be linked to male reproductive disorders. It was reported that scientists had found a link between the use of mild painkillers in pregnancy and the risk of giving birth to a son with undescended testicals with the possible consequences of having both poor sperm quality, as well as the potential for the emergence of testicular germ cell cancer in later life.

The study was done by researchers from the University of Copenhagen as well as other academic and medical institutions in Denmark, Finland and France.

The study featured both an analysis of pregnant women’s medication use and also data on animal research studies which analyzed testes development in rats; one potential outcome of the study indicated that the timing and duration of the mild painkiller use during pregnancy was linked to the risk of undescended testes in male babies. The research also suggests that ibuprofen, aspirin, and other nonsteroidal anti-inflammatory painkillers act as hormonal "endocrine disruptors" thus interfereingwith normal male sexual development. The greatest window of risk appears to be in the second trimester of pregnancy in humans.

To anyone reading the headlines these articles might be worrying at first blush. For example, it seems to suggest that even paracetemol (acetaminophen) may increase the risk in male babies (to a lesser degree).

In addition, there are many women presently being prescribed low dose aspirin during pregnancy to address cases of miscarriage risk or blood-clotting disorders (it is important to note that low dose aspirin is only a quarter of the regular, standard dose). Women in this situation may feel in a conundrum about what to do when managing the relative risks of both taking, and not taking, this medication. First up the advice to anyone pregnant that has taken such painkillers and is concerned about these findings is clear: consult with your doctor.

The British NHS Choices website states: "It is preliminary but important evidence, although at the moment, it is unlikely to change the current recommendations to pregnant women. These are to: avoid medications in general and to use paracetamol rather than ibuprofen or aspirin if painkillers are needed. However, advice should always be sought from a GP or midwife before taking medication." And if your doctor has recommended that you take medication, such as low dose aspirin, consult with him or her as to what to do, if anything.

Some believe that there are shortcomings to the research, for example, small sample sizes and the number of analyses involved reducing the certainty of its finding. The direct causal link has not firmly been proven. Nor does it examine the case of women who have been taking low dose aspirin (quarter the standard dose). Also, there are many other studies which show the benefits and upsides of taking the low dose for miscarriage risk/blood clotting issues on doctor's recommendation. Therefore the reports do need to be read with caution. What is clear is that this is an important area which needs more urgent research. While the rates of undescended testes seen in the study were still relatively low, it seems, as unfortunately happens with reporting in the press, the risk factors quoted can vary from article to article and some of the headlines can be alarmist, suggesting a 'global sperm decline'.

The NHS Choices website concludes: "Overall, this study does not prove a link between use of painkillers in pregnancy and this reproductive disorder in boys but it does suggest an important avenue for more research." Let's hope this research and investigation happens swiftly. As always, it is better to be informed than ignorant, however, information such as this may put a lot of pressure on the reader to think critically as a result - which is easier said than done if it affects you personally.

No matter how level-headed you are normally, to anyone who has suffered or is suffering from primary or secondary infertility, reading such an article could prove to be quite unsettling. Whatever your situation, it is essential to consult with your doctor if you are or have been taking mild painkillers and are worried in order to address any concerns you may have.

A thought .....

Following on from the work and efforts of Dr. Mary Herbert as mentioned in the last blog entry, here's a suggestion:

How about each of us try and have a word with our nurse and/or doctor the next time we visit them to see if they will get information evenings and leaflets running in their practice on the topic of raising fertility awareness to our young men and women? In particular to raise awareness to those in their 20's and 30's who are in the age range who need the information the most.

We have a wonderful example to refer to now.

Thanks!

Bravo Dr Mary Herbert of Newcastle University

http://www.independent.co.uk/life-style/health-and-families/health-news/revealed-why-risk-of-infertility-and-birth-defects-rises-with-age-2069229.html

Back in September this year Dr Mary Herbert of Newcastle University in the UK, reader in Reproductive Biology at the Institute of Ageing and Health, led a team whose research showed that declining levels of proteins called cohesins, which act like a glue holding chromosomes together, are the key to reproductive ageing, and why infertility and birth defects rise with age.

As part of the article on her research (see link above) it was reported that obstetricians have warned that the "bio-panic" women used to suffer on their 30th birthday has moved to their 40th. It further went on to say that some experts have predicted that a fertility time bomb hangs over Britain over the coming decades as women delay childbearing. One in seven couples have problems conceiving, and this could rise to as many as one in three if present trends continue.

With respect to her research and this issue, Dr. Herbert stated that:

• "We are at the stage of saying how the engine works and what is broken. The next stage is answering the question: can it be fixed? Could you add cohesin that would do the job [of holding the chromosomes together]? A lot of effort is going into answering that."
  


• However, no solution to infertility was imminent. "The main message is for women not to delay childbirth. The best way for women to avoid the problem is to have their children earlier. If there are social reasons why they are delaying then we should look at these and make it easier for them."
  

I wrote to Dr. Herbert saying how much I had enjoyed reading about her study and in particular her conclusion about clearly messaging to women to not delay childbirth, and highlighted that the message she advocated sadly is not conveyed in any way properly or sufficiently to women so that they know the risks, and working women are particularly at risk. I asked for any support or guidance that she could provide in order to raise awareness on this topic, and I would just like to share with you all the wonderful response I received from her today.

As part of my letter to Dr Herbert, I raised her attention to this blog and mentioned that in it suggestions are made for improved education and awareness as well as referenced the study in Canada where it warns women could risk being unintentionally childless due to their lack of awareness of how fertility declines with age. I also pointed out the poor success to date in my attempts to raise awareness at the levels that have the authority and gravitas to make a change: I highlighted the letters I had written to the UK's Department of Health, the Department of Education, HFEA, the Royal College of GPs and the Royal College of Obstetricians on the need for improved education and the disappointing response - either a plain vanilla 'we are looking into it and aware of the issue' or else no real acknowledgement as in the case of the RCOGPs who simply said it was already on their curriculum but did not acknowledge that GPs and nurses weren't having the conversations with patients on the topic at pill checks and pap smears. And I pointed the the young women's magazines that I contacted to see if they would be interested in covering the topic and explained that I also had had no response from these.

Dr Herbert responded to me today and I am over the moon with her support:

After consulting with her colleagues about the problem of getting the reproductive ageing message to the family planing practitioners, she indicated that the general feeling is that targeting the practice nurses might be the most effective way to raise awareness. And that the Royal College of Nurses ('RCN") might be a good place to go.

She had also spoken with the head of nursing here at Newcastle Fertility Centre about the possibility of organising information days and/or leaflets for GP practice nurses who was enthusiastic about the idea and therefore hopefully something would begin to happen in that direction.

I will follow this up with the RCN but I would just like to say here and now a massive thank you to Dr. Herbert for her efforts here - this really is the wonderful type of support that will make a change and make for a better informed set of twenty and thirty somethings for the future. And hopefully avoid the 'fertility time-bomb' that some experts warn about.

The assumptions we make of those with fertility challenges

One life lesson that I always seem to never quite learn is that you should never make assumptions about others, because you can realise how wrong you are if you do so without asking any questions or getting the facts. I was very recently reminded of this all over again.

We were talking about someone that we actually don't know, who we had heard was having fertility challenges, and who we were told had said did not want to do IVF. The assumption made was that the person had investigated this with fertility specialists before coming to that conclusion. But it then transpired we may be wrong and I felt very bad.

Here's the thing - even those of us that battle with fertility issues can forget that everyone's experience is different. We shouldn't assume anything. We cannot assume to have an idea of what that person's feelings and thoughts are, and we shouldn't even for a nanosecond pretend to try and second guess. This whole situation certainly made me think a little more about the issue of fertility challenges.

• It can cause a great deal of anxiety and we all react to it in a different way. In someone like me who is such a 'do-er', it translates into wanting to do all the investigation and steps I can to work out what I can do to increase the chances of a successful pregnancy. In others that anxiety can have a paralyzing effect. And there are others who are very relaxed about their chances of success and feel that there is nothing which they need to do. Some of us may need help however, to relax, some of us may need someone to lend us a hand to help us out of our 'mind fog' and some of us may need nothing more than a friend or someone to be there. The biggest challenge is for the person themselves to work out which type they are and for others to help them in this process - this sounds easy but it can be very hard.
  
  
• There is an assumption that the cure to all fertility issues is IVF. Because it is so popular nowadays, we take for granted that this is the only way to go in order to deal with fertility issues but actually that is not the case. There are some fertility specialists who are of the view that people move on too quickly to IVF before trying other things first. And if someone feels that IVF is not for them, for whatever reason, they really shouldn't feel there is nothing they can do. There are certainly lots of things people can try besides IVF which can be helpful and many promote natural fertility remedies.
  
  My personal view is that the two can be complementary - you can pursue traditional medicine and also do natural things like reduce toxins, for example eat organically and do acupuncture to maximize your chances; but you should be open with your practitioners as to what you are doing to be sure the two do not clash with each other. And we should never criticize someone if they don't want to do IVF - it is a personal choice, we should remember to be supportive to alternative things they may wish to try. In my opinion, people can sometimes be too quick to dismiss natural and alternative remedies.
  
  
• We should never forget to stretch out a hand to others - you can never make someone come to you for help, but you can extend a hand and say you are there if they need to speak or point them in the direction of someone who can help. Even if you don't know the person, be there for them, particularly if you know what it is like to be there yourself.
  
  
• I realized how lucky folks in the US actually are. There are many wonderful organizations such as The AFA that are there to help support folks through their family building experience. These organizations are truly active, enthusiastic and progressive. Speaking with counterparts back in the UK, I realize how much more the help and support in that country is ad hoc and just not on the same level - it is changing and getting there, but not quite yet. (If any UK person is reading this and doesn't agree I apologize - this is just my personal view.)
  
  

So where does this all take me? Well probably not very far. But if nothing else it underlines to me how difficult and challenging dealing with fertility issues is. Nobody should ever underestimate this and assume that everyone reacts the same way. Stretch out a hand and seek to understand the person. This isn't about you - it is about them.

Posting on the AFA website: http://theafa.typepad.com/theafablog/2010/11/the-assumptions-we-can-make-of-those-with-fertility-challenges.html

Blastocyst Chromosome Screening - new test trials

Article in UK press:

http://uk.news.yahoo.com/4/20101102/tuk-women-due-to-give-birth-in-new-ivf-t-dba1618.html

CCRM randomised control trial:

http://www.colocrm.com/NewsEvents/10-02-12/Randomized_Control_Trial_for_Blastocyst_Comprehensive_Chromosome_Screening.aspx

Blastocyst Chromosome Screening (BCS) can spot chromosomal mistakes in outwardly normal-looking embryos that may prevent pregnancies or lead to miscarriages. It is still in the trial stage but if successful, it could help increase the IVF success rates as it will help doctors to pick out the 'best' embryos. The trials run so far have focused on the female age bracket 35 to 45 it seems (late thirties in the UK and 38 to 45 in the US).

There is one thing to be said about IVF and it is that innovation trail blazes on. I had never heard of BCS and I thought that my research on IVF was fairly thorough - clearly not! ;) I picked up on this new technology recently in the UK press referring to the first trials in Europe but it is already being done in the US as part of a trial at CCRM - see the second link above.

Back in February of this year, CCRM as part of its notice calling for people to take part in a randomised control trial said that preliminary results from their initial phase trials indicated higher implantation rates, lower miscarriage rates and higher live birth rates following BCS.

I don't know where the UK press take their following statement from, "evidence from the US suggests the procedure can boost the chances of a viable pregnancy after In-Vitro Fertilisation from around 35 to 75 per cent" but if true it is not insignificant.

So what is my lesson learnt? Well, the very institutions themselves will not always tell you about these trials they are running - I am not sure why - but having done an IVF at a CCRM sister clinic I do wonder why they did not tell us about this trial; perhaps we did not fulfil all the criteria? What I would say to anyone out there in the 35 to 40 age bracket is to ask about this! I do not know if it is the answer to your prayers but it is worth asking the doctors about.

Cougars and APS

I was sad to read the story of David Arquette and Courtney Cox splitting up. This is always a bitter-sweet event, as you hope it is a decision that they have taken for a happier future, yet you always feel a sadness too.

In their case, this is even more the case when you factor in the troubles they went through to get their little girl Coco - rounds of IVF and finally a diagnosis of antiphospholipid syndrome (an autoimmune disease associated with thrombosis and pregnancy complications).

I have two (unrelated) points to make:

1. watching Good Morning America discuss the whole Arquette/Cox story on 13 October 2010, the issue of 'cougars' arose and a psychologist professional listed fertility treatments for one of the reasons there were now more 'cougar' women and why the older woman was not scared to 'go it alone' if necessary. I found this very frustrating - I think that it is only a handful of women who feel that fertility treatments mean they can settle down with a younger man at a later stage in her own life - in other words, encourage her to become a 'cougar'. To make such a statement is to over-simplify things.
   
   It may be that fertility treatments as reported in the press given the impression that IVF is the holy grail to allow you to have a baby late into your child-bearing years, but as anyone who reads this blog will know, yes fertility treatments are great, but there is also a lot of misrepresentation in the press about IVF and how it affects female fertility. Basically a woman in her fifties cannot have a child using her own eggs (unless she froze them much earlier), even though the press would have you believe so!! And even freezing your eggs isn't a guarantee to success - it is still early days in that territory.
   
   
2. antiphospholipid syndrome is still one of those tests which you only get most times after having had problems conceiving for a long time, or a few miscarriages. It does not feature in the standard fertility tests that they do right at the beginning. And some doctors still poo poo the whole auto-immune system issue of how it can affect fertility. So it is worth educating people on this and Courtney Cox did a wonderful job at that! Getting it known in the main stream so that people know what questions to ask if they are ever in the unlucky position of having to sit in a fertility specialist's office.

So may be when the dust has settled, and the hype over cougars has calmed, an element of realism will settle back in. But I doubt it - so in the meantime I just sigh when I see comments made flippantly on television about fertility treatments (even if it was only 2 or 3 seconds of the story), and I contemplate writing in to GMA too to tell them my opinion. I question if this is over-reacting, being too sensitive, I'm sure the woman on the show didn't mean to cause offence or trivialise fertility treatments, but then again there is a part of me that says 'no' - if we don't speak up people will continue to only hear the crazy hypotheses put other there sometimes such as - fertility treatments lead to more cougars. We need to avoid the general public taking away the wrong impression of fertility treatments - as the majority of the women suffering fertility issues and battling with fertility treatments are not 'cougars' or 'wannabe cougars'.

Is the message starting to get through?

In recent times, two mainstream young women's magazines have run articles on fertility - Marie Claire in the UK and Cosmopolitan in the US. Hooray!

I ran down the list of fertility articles published by Marie Claire in the last couple of years and this is the first of its kind - up until now it has been far more focused on IVF treatments and how it is a wonderful tool to delay motherhood.

So let's hope this is a sign of shifting sands - that people are now starting to talk the honest nuts and bolts about all things fertility to make sure we make informed decisions at the right points in our lives.

But we still have a long way to go. Seemingly the press is still embarrassed to run articles that discuss things like 'vaginas' but it is okay to discuss 'sperm' - what a wonky crazy world we live in. Until we get over these hang-ups, which are self-created, we are never going to really be in a world where we have open and honest discussions about the things that matter - and one of these are how babies are made and our own sexual health.

Anyway, one step at a time I guess. So for now - well done Cosmopolitan and Marie Claire! But dear magazines, this is just the first step - don't think you have discharged your duty to mankind with this one feature - keep at it, and keep spreading the word with more features like this please....

Who is Lisa Faulkner?

http://www.mirror.co.uk/celebs/news/2010/05/03/adopting-billie-is-the-best-thing-that-s-ever-happened-to-us-115875-22229855/

Who is Lisa Faulkner you may ask? I certainly did. Having been out of the UK for many years, and even when I was there not a massive TV viewer, I had no idea who this television actress was.

Yet someone pointed her out to me recently as an exemplary woman who showed the 'other side' of infertility/subfertility - where IVF doesn't work and you have to think of something else. For some this is adoption and for others it is a decision to lead a child-free life. Each is a completely valid life-choice. This 'side' is so under-represented in the press.

The press rarely reports the cases where IVF doesn't work because (a) people like to hear success stories, not sad ones; and (b) individuals are probably less willing to put themselves out there if they fear they will be viewed as a 'failure' - so it is great that there is the occasional story like this to change public perception. We need more honest accounts like this one.

There is nothing but positive from her story. In her case, they opted for adoption and there are some wonderful points that jump out from her story:

• the path to motherhood can be via a different route - adoption;
• you are no less a 'woman' if you adopt this route and you can hold your head up in public and say 'look at me!';
• how emotionally and financially draining IVF can be, not to say cruel;
• that the adoption process is not easy and requires determination; it took them two years to be approved given the vigorous review process they undertake of prospective parents;
• adoption can be so rewarding - they have looked every minute of having their little girl Billie. She says, "adopting is such an incredible thing to do. I really can't imagine what our lives would be like without Billie."

It also highlights what a difference having a supportive husband or partner will make. He spoke of his desire to adopt if IVF didn't work, was supportive and had a great sense of humour through it all. She was very lucky and I am sure that made a massive difference. They were on the same page with respect to how they wanted to create their family unit and got through it together. Not every couple is so fortunate on this front, and it can create a whole new set of challenges to work through when you have already gone through so much.

So I would like to congratulate Lisa for her honesty and for being a real woman. She tells it to us like it was for her. She doesn't hide the fact that IVF doesn't always work. Even the miracle doctor in the UK Dr Taranissi of ARGC in London wasn't able to make it work for them (he is the doctor credited in the press recently for helping Penny Lancaster get pregnant via IVF). But that was okay, as with the wonderful support of her husband, they were able to create a family via adoption.

AFA Blog Link: http://theafa.typepad.com/theafablog/2010/09/who-is-lisa-faulkner.html

PCOS Awareness Week in the UK - 20 to 27 November 2010

http://www.verity-pcos.org.uk/events/pcos_awareness_week

Above is the link for the very first PCOS Awareness Week that is taking place in the UK from the 20th to the 27th November 2010.

This is very exciting as this a condition that affects so many women, and it is good to show support to each other, and educate each other. So often women are unaware that they have the condition until they go to see the doctor or start to try to conceive.

So get involved!

During PCOS Awareness Week, they are planning at least one activity every single day. These will be activities run by the PCOS Charity Verity but also by women with PCOS and businesses that support the work Verity does, (can you do something in your local area?)

The activities they have instore so far for PCOS Awareness Week include:

Evaluation of how the NHS is supporting women with PCOS
Shouting about PCOS at Speakers Corner in Hyde Park
A knit-your-own PCOS Snood for winter
A PCOS calendar
PCOS conference with sessions on emotion, excess hair, alopecia, fertility, weight loss, being slim with PCOS and all about your menstrual cycle

PCOS Awareness Week needs your support if it's to be successful now in the future. Get involved!

Reply from the Ministry of Education

The reply from the Ministry of Education arrived on 9th September, so I am sharing it with you all here. Scroll to the end of this piece for their reply. I am starting to learn that politicians reply with a guarded and non-committal standard-form answer which at first blush can dishearten, I am sure. But of utmost importance is that the message was sent, and one hopes, not only will be read but digested and acted upon by someone with the power to change policy. I have asked them to indicate to me where I can follow the policy considerations that the Government is said to be taking.

I could continue to sigh at certain responses I get from people to the work I am doing to raise awareness - only today after my previous blog article, I received the following comment from someone:

The person acknowledged reading all the information circulated and to being able to see what we were working so hard to change, and so hoped it made a difference. And we were wished all the love and luck in the world.

Now don't get me wrong, I value the support that is expressed a great deal, but if I were of a less determined and optimistic spirit I would be saddened at the fact that it feels as if a key point continues to be lost a little, however clearly I think I articulate it; it feels as if people still view from the sidelines to an extent.

So at the risk of sounding repetitious I will say it again. We are each of us a vessel and conduit for better communication and change. Every thing we do or say, however little it may seem to us at the time, can have a positive impact. We just need to try. It isn't all up to someone else or me, to make a change. So here is my reply to anyone and everyone who still doesn't feel the need or is worried about being pro-active:

"I hope that my work empowers you to have the conversations that have been so sadly lacking - you too can make a difference!"

Good luck everyone!

REPLY FROM MINISTRY OF EDUCATION (9 SEPTEMBER 2010):

"Thank you for your email of 10 August addressed to Ministers about improving sex education and awareness of fertility issues. On this occasion I have been asked to reply.

Following the instatement of the Coalition Government, Ministers are considering their position of a number of policies, including SRE. They do believe it is important that all children should have high quality SRE in school in order to make the right decisions in later life. However, they recognise that there are a wide range of views on SRE and want to ensure that they are adopting the best approach. They will announce their intentions in due course.

Thank you for taking the time to write and I hope you are reassured that this issue is very much on the Government's agenda.

Yours sincerely

Leona Smith
Public Communications Unit
www.education.gov.uk"

Raising Fertility Awareness - it can be frustrating but hang in there

http://theafa.typepad.com/theafablog/2010/09/raising-fertility-awareness-it-can-be-frustrating-but-hang-in-there.html - also on AFA site

I have been writing and lobbying for about six months now to improve fertility and infertility awareness. There is one word which sums up how it has felt: frustrating.

My lobbying has extended to a blog, writing pieces which are posted on sites such as the AFA site, emailing friends and family and writing to government bodies, politicians and fertility specialists - all with a call for increased awareness. The frustration, however, comes from the responses received.

In the case of some family members, the response has been silence. What do this mean? That they don't approve? That they feel embarrassed? Are they in some sort of denial? Do they think that they do not have a role in raising awareness and being supportive to others? And this silence has extended to family members who themselves suffered from infertility, which is difficult to fathom.

Other family and friends have expressed admiration for my efforts, but in some of the responses I still detect that while they make encouraging noises, they don't seem to appreciate that they are actually a conduit themselves for improved awareness: they themselves have the ability to talk to people about (in)fertility issues, or even lobby for awareness. An example of this was from my mother who when asked for a reaction to my pieces said, 'let me know if anybody does anything about it'. It continued to be, in her eyes, somebody else's job to do, and not hers.

This sort of response is not limited to friends and family, however; the same sort of sentiment is expressed by the medical profession themselves. On the recommendation of the Human Fertilisation and Embrylogy Association, a letter was sent to the Royal College of General Practitioners ("RCGP") regarding the need for more pro-activity from the medical profession to inform patients wanting a family one day about the fertility challenges that can arise and how fertility declines with age. The Honorary Secretary of the RCGP did reply promptly but here is what she said,

'The College does have these issues in our curriculum and we appreciate their importance'.

There was no acknowledgement of the fact that while it is 'in the curriculum' that the point was that general practitioners are not always having the conversations with their patients at pill checks and other well-women checks as they should. I felt compelled to reply to the Honorary Secretary and highlight that, as a patient, I could inform her that the information was not being passed on as she might expect or anticipate, and that I recommended that they issue memoranda to GPS as reminders to the importance of their pro-activity in these areas and to reinforce it also as part of their continuing professional development.

So what can we do about this? To encourage people to be more responsible and to look out for each other in terms of raising awareness and being supportive of those with infertility.

For one, the key is to not loose hope, energy and determination. It is going to be a long and slow road to raise awareness, but it can be done. Rome wasn't built in a day so we shouldn't expect this to be an overnight change either. But with perserverance we can slowly chip away at the prejudices and help people to face the realities of fertility issues.

We should not feel that our efforts are in vain: in the memoirs of an emminent criminal defence barrister (attorney) in the United Kingdom, he states that what he has observed over his long career is that progress is brought about by the extraordinary efforts of ordinary groups of people who fight for what is right and change; you cannot rely on politicians. This gives me the hope that change is possible with a little effort from us all.

Teach people 'how' to have the conversation with the people they meet to raise fertility awareness. It has struck me just how much people don't know how to discuss the topic. Their own embarrassment to raise it prevents them from doing it. They may not stay silent out of malice, but their own insecurities can stop them from doing an act of kindness.

People fear sometimes that they will come across as nagging, or that they may get a bad reply from the person if they raise the topic, or do not know how to handle the reply if it is not what they had anticipated. They, therefore, hide behind statements such as 'you are a very private couple' or 'you are an adult' to defend their own fears of raising the topic.

So may be it would be good to have some way of teaching people how to have the confidence to have the conversation on fertility awareness. To feel equipped with a set reply when someone cuts them off briskly saying they don't want to discuss or they do not get the reception they had hoped for. What follows are my own thoughts and opinions, and not those of any professional in the fertility field - but it would be wonderful to see it developed by professionals to help friends and family have the conversations which can save people from uneccessarily difficult times.

Some people are not even comfortable asking a person if they would like children, but I personally see no issue with this. It is one of the steps in life which many, many people take. If they say they do, or say that they think they may one day, this gives you an opening to have more of a conversation. The key is to not come across as nagging, to not make the person feel belittled or stupid for any decisions or lack of information that they have had up to that point. And, of course, you never know if they are already battling with infertility issues privately and just have not told you. So as the initiator, you have to be prepared for an unexpected response possibly - but whatever the responses here is the most important thing to come out of your conversation: for the person to feel that you are non-judgmental and supportive whatever they decide, and that you are there to speak more if they would ever like to. And for those who have yet to start trying to conceive, to plant the seed of thought in the person's mind with a pointer as to where to get more information on the topic if they would like it - for example, a conversation with their doctor, or even better, a gynaecologist, or to websites such as the American Fertility Association.

If they say they do not want children, then I do think you can wrap up the conversation in a relatively quick fashion but in a manner that, again, leaves them feeling that you are non-judgmental and supportive whatever the case and which leaves the door open for more dialogue if they would like. They do not want your opinion on the correctness of their decision so make clear your respect but do tell them that if they ever have questions or feel they may change their mind, that you are happy to chat, or if you or they aren't comfortable to have the conversation, to speak with their doctor. People are complex creatures and they sometimes use this as a standard answer to avoid having a conversation on a topic that they havent quite sorted out in their head yet, and so aren't comfortable discussing. But they may be in a few months' time. Or again, they may use this response as a smoke screen to hide fertilty issues which they are struggling with privately. And, of course, there are those people who truly do not want children.

I have emailed friends and family members of child bearing age or with relatives of child-bearing age, articles regarding how fertility changes with age with a line saying, in case you would might like children one day otherwise feel to ignore. People have either been silent or expressed gratitude, but nobody has been rude. Sometimes it just needs a little courage and sensitivity to the issue, to stretch out a supportive hand to a friend or family member.

So yes, it may be frustrating but the key is to not give up, even if people don't seem to want to 'get with the program' with the positivity that you would expect. I am convinced that good does come of good. So spreading the word will eventually have a positive effect on somebody's life, even if you aren't aware of it. And if only just one couple is spared the challenges of (in)fertility because of your little attempt at advocacy, it will have been worth it.

Is infertility an illness? A perspective and call for increased advocacy for awareness

Link to the blog on the AFA: http://theafa.typepad.com/theafablog/2010/08/is-infertility-an-illness-a-personal-perspective-and-call-for-increased-advocacy-for-awareness.html

I was recently told that infertility was not an illness. In the speaker’s mind, infertility therefore did not merit emotional support in the same way as if the person was suffering from an illness.

This gave pause for thought. I hadn’t actually thought about it in those terms. Admittedly, it is not like having a life-threatening condition such as cancer. Without a doubt, however, it is a medical condition, and one which can have far-reaching consequences on the person suffering from it.

What analogies could you use to express what infertility feels like? Could you say that it is like having a tumor on your arm which you don’t know if can be controlled with treatments, or if they will have to cut off your arm? I was told that this could be a bit melodramatic. But I don’t think it is, as emotionally it evokes how a person suffering from infertility can feel - as if a part of them could potentially always be missing. There is a sense of grief. Infertility can also lead in some cases to mental illness – this is a well known fact from time immemorial.

If people are suffering, shouldn’t we be understanding and sympathetic? If the up-and-coming athlete suddenly has a fatal injury that means he can’t run in the Olympics, we would feel for that person and not tell them to ‘just get over it’. While we can’t all have the ambition of running in the Olympics, it is very natural for the majority of us to have the ambition of having a family of our own one day. Therefore, being potentially denied something which is taken as one of the natural and defining events in life, will affect a person to their core.

A dismissive reaction to infertility, however, can be very typical of many people in society.

Religious arguments are sometimes put forward. Religious thinking such as the Catholic Church sees any form of intervention, be it even for the creation of life, as a sin, as they view infertility as a sign from God that the person should look to an alternative in their lives.

Political and financial considerations can influence a person’s thinking on the topic: In the United Kingdom where there is a National Health Service (‘NHS’) (there is a monthly deduction from salaries to contribute to the national healthcare pot), there have been many objections along similar lines to those in the USA saying that insurance companies should not cover fertility treatments because it is not an illness. People react negatively because they do not want to see their monies being spent against fertility treatments when they would rather see it spent against saving lives which they consider more relevant to them. In economic terms what is the opportunity cost of spending on infertility? This is a very subjective evaluation.

There is a general lack of awareness of infertility as an issue: A large amount of the reaction that the man in the street has to infertility comes from the fact that it is not something that people talk about openly. Therefore the man in the street may not actually know what it actually feels like. Or be aware of how common it is. One in eight people in the USA is dealing with infertility. Infertility comes in many forms – PCOS, endometriosis, advancing age, low sperm count, sperm antibodies, miscarriages etc. These are all debilitating to a couple trying to start a family, and sadly conditions that they generally only learn about when they join the infertility world, and not before. So the person who has never been affected by fertility issues, or known someone affected by it, is definitely not going to know about it.

Even if the man in the street knows someone with fertility issues, it is a difficult topic to grapple with emotionally, and it is easier to turn the other cheek or to think of something else. Although it is time to change and bring discussing fertility issues out of the closet.

Human nature cannot be under-estimated: It is human nature for people to make quick judgments on a topic without questioning further as to whether they have all the information, considered all the angles and the legitimacy of the sources. This is even more the case in today’s world which is very much driven by people focusing on the headline and punch-line in a fast paced media environment.

A good example of this is when you read the online comments section on newspaper articles. You will see comments telling people going through infertility treatment to stop being selfish and to just adopt one of the needy children in the world. What people, however, do not realize is what struggles those people have gone through already and what the entire adoption process entails – it is not easy. The numbers of children available for local adoption, happily, are far less than they used to be. International adoption can be an expensive process. The adoption process is long and intrusive. In some cases you are required to maintain contact with the birth relatives (it can be direct or indirect contact). These are all things which the individuals have to come to terms with. Until you walk in another man’s shoes, it is easy to make off the cuff comments.

What would these people say if you told them that instead of having a second or third child, they should adopt and play back their own arguments to them – feed an existing needy or hungry child as opposed to bring another into the world? From an environmental footprint perspective it is said that families should seek to have less children. May be they should have had one less child or even have elected to have no biological children.

It is a different world today to before: My mother recently told me that she had a conversation with my aunt along the lines of ‘what is wrong with the world? Why is there so much more of this today than before?’ This was a very interesting comment. For one, people probably didn’t go to the doctor in those days for such things and just got on with life and accepted their fate as there was nothing to be done. So it was not considered something relevant to discuss, or was swept under the carpet. If we could go back in time with the knowledge we have today I think we would be surprised, for example, at the level of miscarriages occurring.

In today’s world it is a fact that your son or daughter is likely to have children later in life than before. The delayed timing of the child rearing years isn’t necessarily out of choice.

In today’s world it can take many years to meet Mr. or Mrs. Right.

We have created a society where many people spend much of their young lives in secondary and tertiary education in order to gain access to an average to decent job. In years gone by, often that same level job would not have required today’s level of advance study. This, therefore, involves personal debt and more years before young people are able to afford a home for a family.

The cost of housing is expensive and takes a far greater percentage of a person’s salary than it used to, so it can take people many more years to get on the property ladder and be able to put a roof to put over their children’s heads, as they feel responsible parents should do.

Parents today often want to live their own lives once their children are grown up. This means that even if they can, they may be less likely to offer to help their children financially or with childcare. Children know they need to find a way to pay their way on their own, which translates into a delay in child-rearing years. There are those parents, of course, who would love to be able to help their children but cannot do so financially, or due to poor health. And even if parents are willing to help with childcare, they may live far away from their children because their children have had to move to where the work was.

Take even only one of these factors, and you have the lives of many young adults today delaying when they start to try for a family, not out of choice but because it has taken them longer to find their ‘mate’ and build their ‘nest’. And consequently these couples end up with an increased risk of infertility issues. Which can come as an even harder blow to them when they see all their efforts into building that ‘nest’ could be redundant in terms of having biological children.

We need to remind people that we have a collective responsibility for the type of society that we live in today, and the fertility challenges that those of child-bearing age experience today. It isn’t all of somebody else’s making, and nothing to do with them. The person suffering infertility could well be themselves or their son or daughter.

Fertility may not be an illness as we understand the word ordinarily. It isn’t going to kill you physically necessarily. But it is, without doubt, a medical condition with a much higher level of incidence today than it should have and one which people should be supportive of. It can have a very serious and permanent effect on people mentally, made worse by the complications of growing up in today’s world. In November 2009, the World Health Organization in Geneva defined infertility as a disease, which is a great step in allowing people to validate the suffering that many are experiencing and people are ignoring. And people are starting to stand up and make a voice for their message to be heard – two good recent examples are the What IF: A portrait of infertility Video which won an award for promoting fertility awareness with a call for grassroots advocacy and the SELF Magazine Article on Breaking the Silence on Infertility. The man in the street should understand that the increased incidence of infertility is a modern day phenomenon not to be ignored. If people want to see less of this ‘medical condition’, they need to stop being critical or unsupportive. They need to start doing, taking part, speaking to their children and family about this important topic and helping to change society so that we are more supportive and encouraging to young couples. They need to support research aimed at reducing infertility, and funding to help those who need assistance.

Medical condition or not, without doubt, it is an ‘illness’ of our modern world. And it is in our hands whether to change this or not in an enlightened way. Not anybody else’s.

Royal College of General Practitioners - their reply to letter

Below is the response from the Royal College of General Practitioners who were similarly approached for improved education on the topic of fertility awareness.

Truth be told I find it frustrating that they take this 'we are aware and have it under control' approach to the issue, when clearly they do not. See my reply to their response below also:

--------------------------------------------------------------------------------
From: Hon. Sec
Sent: Tue, 24 August, 2010 5:39:52
Subject: RE: Letter to Royal College of General Practitioners


Thank you for your letter sent to the Royal College of General Practitioners on 18th August 2010, the content of which has been duly noted. The College does have these issues in our MRCGP curriculum and we appreciate their importance.

Yours sincerely,


Professor Amanda Howe
Honorary Secretary
Royal College of General Practitioners

THE REPLY BACK SAME DAY:

Dear Professor Howe,


Thank you for your reply. While I see that you say that these issues are on the MRCGP curriculum, which is encouraging, from experience as a patient I am able to tell you that the information is not being passed on by GPs in the manner that perhaps you expect or anticipate.

Therefore, my recommendation to you would be to re-visit the teaching of those modules and to issue memoranda to practising general practitioners as to the importance of their pro-activity in this area. Reinforcement of the point as part of GP's continuing professional development training would also be recommended.

NHS Choices - reply from the NHS information website

In reply to the letter to the NHS Choices Team in the UK, here is what was received on 18 August 2010:

Thanks for your recent email on NHS Choices fertility content. We aim with this content to provide a balanced and useful introduction to fertility and issues around it.

The fertility content in Live Well is due to be reviewed soon, and I certainly will be mindful of your view that we could do more to highlight the fact that fertility declines with age.

It is not, however, in the power of us at NHS Choices to tell GPs how to practice, so we won't be able to ensure that GPs talk to women about this issue when prescribing the pill.

Thanks for reading NHS Choices.

Kind Regards

NHS Choices Team

AND THE REPLY TO THEM:

Thank you for the reply. Yes the point is to advice people as to how fertility declines with age, but also of the issues affecting fertility that can arise - e.g. endometriosis, polyps, PCOS etc - these can occur earlier and women are very unaware that such conditions exist unless they have had problems or start to try for a family.

Education of all fertility issues is key. Not just addressing infertility when it is already a problem but upfront prevention and detection. Early awareness is key to mitigating the risk and managing problems in an effective manner.

Reply from MPs to Department of Health

Below is the reply from the MPs to the Department of Health.

First up, it is disappointing in that they seem to miss the point that it is also about fertility awareness - they focus on the infertility aspect which makes me fear they continue to miss the point. The reply in other respects is very plain vanilla standard. Non-committal and a simple acknowledgement of the communication.

Is there more that can be done? Yes. We need to continue lobbying. Which is where you all come in. Watch out for the petition which will be circulating shortly. And for right now, a response will be sent to make clear that the point is not just dealing with infertility but fertility awareness - making us more aware of our own biology in advance, so we are properly informed and be pro-active in the steps we take to mitigate the risk.

Bottom-line, the situation is not going to improve - only worsen - with more and more cuts. And with headlines such as this, saying that in the UK if you are unhealthy (e.g. a smoker, or overweight) that you may be denied healthcare in the future, the point becomes all the more relevant. http://uk.news.yahoo.com/4/20100816/tuk-unhealthy-brits-could-be-denied-free-dba1618.html.

Therefore, doing nothing is not an option.

REPLY FROM DEPARTMENT OF HEALTH

Thank you for your emails of 16 July and 22 July to Andrew Lansley, Simon Burns, Paul Burstow and Anne Milton about infertility. I have been asked to reply.

I should explain that, due to the quantity of correspondence received by the Department, it is not possible for Ministers to reply to all letters and emails personally.

In addition to my colleague's previous replies, I can confirm that the Department was interested to read your suggestions and that policy officials are aware of them. However, while the Department is grateful for any submissions from members of the public, it is not possible to guarantee that policy officials will be in a position to enter into dialogue regarding such submissions.

I hope this reply is helpful.

Yours sincerely,

Jonathan Tringham
Customer Service Centre
Department of Health

Letter to Department of Education -as sent today

Attention: see attached for distribution list

Date: 10 August 2010

Dear Sirs and Madam

Improving education and awareness on fertility issues

This letter is written to you regarding the serious lack of information and education amongst men and women on the topic of fertility issues and infertility awareness. It affects every couple of child-bearing age. One category particularly at risk is working women. You receive this today in your capacity as MP and office-holder of the Department of Education at the recommendation of the Human Fertilisation & Embryology Authority to enlist your attention and support. This will also be shared with many other relevant bodies, and a letter in similar terms has also been written to the Department of Health.

There is little information readily available to young men and women to inform them of the types of fertility challenges they may face in life: for example, that male infertility relates to one third of cases, the risk of declining fertility with age - the risk of not starting to try for a family in a woman's early thirties at the latest, if they can help it (other issues can prevent this, such as health or lack of a stable relationship).

Fertility information is predominantly on infertility websites that a young person is not likely to turn to as a port of call. Information on the web can be incorrect, misleading or lack the full facts - and yet people place a large, albeit misplaced, reliance on these sources. Doctors and nurses do not talk to their patients on these topics necessarily to ensure they are correctly informed. The media creates a twisted and incorrect perception of the issues often, because it focuses more on sensationalist headlines as opposed to reliable, balanced and well researched reporting. In today's fast paced world, people rely too much on sound-bites and headlines for information. Friends and families can be reluctant to talk on these topics, even if they are well informed, out of fear of offending and not wanting to interfere. It is tragic that out of fear people do not even take the step to ask if someone would like children, and less still be sure that the person knows what they need to know, when they need to know or point them in the direction of getting the right information. Sadly, a lot of stigma still remains around discussing issues of fertility and infertility.

There is a crisis occurring, therefore, in the developed nations of our modern times. Fertility education and infertility awareness is an issue relevant to men as much as women, and something they need to be aware of in good time - which means before they decide to start for a family, as otherwise it may be too late for them to make the correct and informed decisions for their lives.

You may not appreciate the severity of the issue. We would, therefore, like to refer you to the following resources for information:

www.fertilityandage.blogspot.com - promoting fertility awareness & education.
http://www.vimeo.com/11214833 - video promoting infertility awareness
http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1 - article exploring why infertility awareness is still where cancer was 10/20 years ago
http://hannahweptsarahlaughed.blogspot.com/ - infertility advocate from the United States

There is a lot that can be done to alleviate the trauma that many couples are experiencing today in the United Kingdom. Women in their thirties and forties are saying: why are we still treated as teenagers even in our thirties and older when we go for a pill check? Why do so many of us not know the hard facts? Why do those 'in the know' not share? Why isn't this taught in schools and universities?

Educationists along with the medical profession itself can do much to improve the situation with a little effort and at a relatively modest cost. You will see some suggestions in www.fertilityandage.blogspot.com:

1) Improve education at schools making it more than a teenage pregnancy focus. Continue this into university so that young adults are aware;
2) improve education of GPs on this topic;
3) make it a requirement that fertility conversations are had with women at pill checks and pap smears;
4) encourage doctors generally to have conversation with patients in their 20's and 30's - they will need guidance on how to do this correctly and sensitively;
5) produce booklets on the topic made available to men and women in their 20's and 30's;
6) work with the health officials of companies to promote awareness amongst their staff; and
7) promotion of fertility awareness days nationally.

Government is coming under much criticism for spending on IVF. Sadly to an extent Government has allowed the problem to exacerbate. It does not do enough to address up front prevention - seeking to reduce the avoidable cases of infertility. It is not that modern couples do not listen; it is that they are not being given the correct facts to be able to make better and more informed decisions.

If prevention and education was a greater focus area, we would eventually see a drop in infertility rates which would in turn translate into more money in the public coffers and less cases of IVF treatments being needed. People do not know what they do not know and it is very hard for them to make good and wise life choices with respect to when to start trying for a family if they really don't fully understand the risks. There will always be a need for IVF, but at least it will have been controlled to those that really needed it, and will stop this becoming an escalating issue.

In the same way as once upon a time we used to think it was fine to smoke and drink while pregnant, and now know the consequences of doing this, with improved education on fertility we can similarly make inroads to reduce cases of infertility. The Department of Education, as well as the Department of Health, are excellently placed to lead with this, as they have the power to influence change and the gravitas to speak with authority on the topic and bring about much needed improvements. This is a topic that, unfortunately, too many people shy away from discussing in our modern world and which in turn is letting down our sons and daughters. The Department of Education cannot rely on friends and families to have these conversations because they aren’t always happening.

The goal is simple: reducing the avoidable cases of infertility and that correct education becomes just part of each young adult's knowledge tapestry so that they do not have unpleasant surprises later in life. Let's help people move to a world where we reduce these avoidable cases of infertility requiring treatment and of women who are unintentionally childless - which ironically tends to be the better educated echelons of society.

Please work to bring about this change!


DISTRIBUTION LIST


ministers@education.gsi.gov.uk;
Rt Honorable Michael Gove MP, Secretary of State for Education - govem@parliament.uk;
Nick Gibb MP, Minister of State for Schools - gibbn@parliament.uk;
Sarah Teather MP, Minister of State for Children and Families - teathers@parliament.uk;
Tim Loughton MP, Parliamentary Under-Secretary of State for Children and Families -oughtont@parliament.uk;

sthhollanddeepings@btopenworld.com;
John Hayes MP, Minister of State for Further Education, Skills and Lifelong Learning -hayesj@parliament.uk;

Improving education and awareness - letter to Ministers

As some may know, I wrote to the UK Department of Health lobbying for improved education and awareness on (in)fertility issues, and copied the letter also to several fertility organisations. The HFEA has suggested that I also write to the UK Department of Education, so am about to do that. But here is what I am thinking: to do a petition along the following lines, which is pretty much the text of my letter to Ministers. So get ready for the link to be posted soon and take the pledge the support:

We, the undersigned ....

…feel strongly that there is a serious lack of information and education amongst men and women on the topic of fertility issues and infertility awareness. It affects every couple of child-bearing age. One category particularly at risk is working women. You receive this today in your capacity as MP and office-holder of the Department of Health or Education to enlist your attention and support. This will also be shared with many other relevant bodies.

There is little information readily available to young men and women to inform them of the types of fertility challenges they may face in life: for example, that male infertility relates to one third of cases, the risk of declining fertility with age - the risk of not starting to try for a family in a woman's early thirties at the latest, if they can help it (other issues can prevent this, such as health or lack of a stable relationship).

Fertility information is predominantly on infertility websites that a young person is not likely to turn to as a port of call. Information on the web can be incorrect, misleading or lack the full facts - and yet people place a large, albeit misplaced, reliance on these sources. Doctors and nurses do not talk to their patients on these topics necessarily to ensure they are correctly informed. The media creates a twisted and incorrect perception of the issues often, because it focuses more on sensationalist headlines as opposed to reliable, balanced and well researched reporting. In today's fast paced world, people rely too much on sound-bites and headlines for information. Friends and families can be reluctant to talk on these topics, even if they are well informed, out of fear of offending and not wanting to interfere. It is tragic that out of fear people do not even take the step to ask if someone would like children, and less still be sure that the person knows what they need to know, when they need to know or point them in the direction of getting the right information. Sadly, a lot of stigma still remains around discussing issues of fertility and infertility.

There is a crisis occurring, therefore, in the developed nations of our modern times. Fertility education and infertility awareness is an issue relevant to men as much as women, and something they need to be aware of in good time - which means before they decide to start for a family, as otherwise it may be too late for them to make the correct and informed decisions for their lives.

You may not appreciate the severity of the issue. We would, therefore, like to refer you to the following resources for information:

www.fertilityandage.blogspot.com - promoting fertility awareness & education.
http://www.vimeo.com/11214833 - video promoting infertility awareness
http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1 - article exploring why infertility awareness is still where cancer was 10/20 years ago
http://hannahweptsarahlaughed.blogspot.com/ - infertility advocate from the United States

There is a lot that can be done to alleviate the trauma that many couples are experiencing today in the United Kingdom. Women in their thirties and forties are saying: why are we still treated as teenagers even in our thirties and older when we go for a pill check? Why do so many of us not know the hard facts? Why do those 'in the know' not share?

The medical profession and educationists themselves can do much to improve the situation with a little effort and at a relatively modest cost. You will see some suggestions in www.fertilityandage.blogspot.com:

1) Improve education at schools making it more than a teenage pregnancy focus;
2) improve education of GPs on this topic;
3) make it a requirement that fertility conversations are had with women at pill checks and pap smears;
4) encourage doctors generally to have conversation with patients in their 20's and 30's - they will need guidance on how to do this correctly and sensitively;
5) produce booklets on the topic made available to men and women in their 20's and 30's;
6) work with the health officials of companies to promote awareness amongst their staff; and
7) promotion of fertility awareness days nationally.

The NHS in the UK is coming under much criticism for spending on IVF. Sadly to an extent the NHS has allowed the problem to exacerbate. It does not do enough to address up front prevention - seeking to reduce the avoidable cases of infertility. It is not that modern couples do not listen; it is that they are not being given the correct facts to be able to make better and more informed decisions.

If prevention and education was a greater focus area, we would eventually see a drop in infertility rates which would in turn translate into more money in the public coffers and less cases of IVF treatments being needed. People do not know what they do not know and it is very hard for them to make good and wise life choices with respect to when to start trying for a family if they really don't fully understand the risks. There will always be a need for IVF, but at least it will have been controlled to those that really needed it, and will stop this becoming an escalating issue.

In the same way as once upon a time we used to think it was fine to smoke and drink while pregnant, and now know the consequences of doing this, with improved education on fertility we can similarly make inroads to reduce cases of infertility. The medical profession, the Department of Health and the Department of Education are excellently placed to lead with this, as they have the gravitas to speak with authority on the topic and change public perception of it. A topic that, unfortunately, too many people shy away from discussing in our modern world and which in turn is letting down our sons and daughters. Government cannot rely on friends and families to have these conversations because they aren’t always happening.

Our goal is simple: reducing the avoidable cases of infertility and that correct education becomes just part of each young adult's knowledge tapestry so that they do not have unpleasant surprises later in life. Let's help people move to a world where we reduce these avoidable cases of infertility requiring treatment and of women who are unintentionally childless - which ironically can be the better educated echelons of society.

Please work to bring about this change!

Petition for IVF on NHS in the UK - what you can do to bring about change and improvement, regardless of your view

I recently received a petition to stop the postcode lottery in the UK in relation to how IVF treatment is allocated to those needing it.

http://www.petitiononline.com/freeivf/petition-sign.html

If you support this initiative, please sign the petition. It may help someone you know who needs it and cannot afford it. Of course, not everyone is of the political or religious view that this is a good thing. Each (wo)man can only make their own decisions.

The thing which is saddest, are those who would happily take from the system if they were the man walking in those 'fertility-challenged' shoes, but do not support it from others. Isn't that a double standard?

Here is the challenge to all of us - what are you doing to be sure that there is less of a demand on the NHS for such treatments, to raise awareness of fertility issues? This is regardless of whether you don't think it should be on the NHS in the first place, or do not support such treatment morally - but if that is your view, then this applies to you even more:

• Have you spoken to everyone you know in their twenties and thirties to be sure they are/were properly informed on fertility issues?;
• Have you made sure the older generation are aware of infertility and what it is like for this generation and the next - just keeping it to the closest circle of people to you: this could be your sister, brother, daughter, son, grand-daughter or grandson; let alone a friend of yours or other family relative?;
• If you have the means and have no moral dilemma with such treatments, will you help your children set up a little fund for treatment if they need it but can't afford it, or can't get a loan to cover it?
• Do you know how much fertility treatments (e.g. IVF) cost and how many times people attempt them?
  

If the answer to any of these questions is 'no', you're a perfect candidate to become an advocate for increased (in)fertility awareness and education. We are blessed with a brain and mouth and it is up to us to put them to good use - don't waste your time gossiping - use them to do good in the world and help make it a better place for those we care about.

Silence or thinking it is somebody else's responsibility or problem does not lead to a positive outcome.

AMH Testing - is this a good or a bad thing? One take on the debate across the pond in the UK

http://theafa.typepad.com/theafablog/2010/07/the-amh-test-a-good-or-a-bad-thing-one-womans-take-on-the-debate-across-the-pond.html - see this link to the same on the AFA Blog


There has been a lot of discussion in the United Kingdom media over the last month as to the use of the AMH test. Two new uses are suggested: one is as a predictive tool for women to know when they will hit menopause and to be able to decide therefore when to try for a family; the other is for the National Health Service (NHS) to use as the deciding factor on whether the State pays for IVF treatment or not. Currently age is one of the key criteria applied.

With respect to the latter, some of the concerns are financial and political relating to a person's view as to whether fertility treatment should be paid for by the State or not. (It should be noted that the State discounts monies from each working person's income to contribute to the pot to pay for health coverage for all.) People fear that this will open floodgates to more IVF being provided by the State and in many cases people don't feel that it should be covered in the first place, and that couples should pay for it themselves. The arguments aren't dissimilar to those in the USA regarding how contributions to insurance schemes should be applied.

The other concerns however relate to how the AMH test result will be used by women. Will they rely too much on this result and forget the other factors which may affect their fertility? A woman with a good AMH number may assume she can delay having children into her late thirties and forget that there are other relevant factors – e.g. as she gets older the quality of her eggs reduces, there is a greater risk of chromosomal defects, miscarriages are more of a risk. The best age physically to have a child is between 18 and 30 apparently, and while in today's world it isn't always possible to have children in that bracket, it isn't necessarily a good idea to put off having children much past thirty or thirty five if you can help it. The fear is that over reliance on the AMH result will exacerbate the modern problem of couples electing to delay child-birth later than they should.


So is AMH testing a good or a bad thing?


I don't propose to try and discuss whether it should be used as criteria for determining who gets State paid IVF and who doesn't. That is one for the politicians and medical professionals to decide. My only observation is that fertility is a very complicated issue, and someone with a low AMH isn't always the poor responder, so it is dangerous to be overly simplistic in the evaluation criteria.


In relation to how an AMH test can help women to understand how fertile she is, though, I do think it is a good thing. But with one huge caveat; which is this:


It has to be relayed and given to women in the correct factual context. You can't just say to a woman that she has a good AMH number and allow her to think that she should be fine to delay having a family if she wants to. She needs to be given all the other relevant facts and risks and be told that this is just one indicator as to her fertility. There are many others risks and factors which are relevant and so that she cannot rely only on a good AMH. She has to be told to not ignore all the other risks that come with age – for example if she has fibroids or endometriosis, this could be more of a complication as the years go on. And further, she should be reminded that even if she is absolutely fine it doesn’t rule out that her partner/husband may have issues – male fertility problems are the sole cause of at least a third of cases.


Any initiative which enables women to be more aware of her fertility from early on, as opposed to having an unpleasant surprise when it may be too late, has to be a positive thing in my opinion. But she needs to be made to understand her AMH number in the context of all of the other risk factors that come with age and fertility. And that she is only half of the equation, albeit an important half. And while presently AMH testing seems to be less popular in the US than in the UK, in our modern world of internet, ideas can cross the pond pretty swiftly. So everyone needs to be aware of this as it relates to an issue which applies to all couples, irrespective of their nation. The goal is the same – reducing the number of infertility cases and improving education on fertility.

Breaking the silence on infertility - SELF Magazine

This is an excellent article to read on breaking the silence on infertility and encouraging people to be more aware of the issues relating to infertility and fertility.

http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1

People suffer in silence and the topic of discussing issues relating to (in)fertility remain in the dark ages. This article helps to chip away at that, and shine a little light on the issue.

Thank you for taking the time to read.

What IF? A portrait of infertility

Please look at the following vimeo - http://www.vimeo.com/11214833 which I found today. It has just won a Team RESOLVE Choice Award for best viral video and rightly so.

It is absolutely excellent!

The words she uses to describe her video are wonderful:

My hope is that this video illustrates the "everydayness" of coping with infertility and that by publicly "outing" myself and my struggle with infertility that I can help erase some of the stigma surrounding the subject. I hope I can be a voice for those women and couples who can't speak up or speak out for themselves.

I feel exactly the same about removing the stigma surrounding the subject - discussing fertility and infertility should have no stigma. I wish I had been as eloquent as she is, however, regarding the women who can't speak up or out for themselves - those who suffer in silence, feeling unable to speak about it all. Being silent isn't a sign of selfishness or weakness, it is that the world we live in can make it very hard for us. Ridiculously hard.

So let's all help each other to be stronger and make life a little easier for each other at each stage.

Please share this video clip with all those you know. I love the line in the text below the video. When something is so perfectly said, there is no need to para phrase - I can simply repeat:

Please continue this grassroots advocacy by continuing to share this video online!

Why do we know so little about our own fertility?

Here are the facts: Female fertility in fact begins to decline from late twenties/early thirties (not thirty-five), with the rate of decline increasing at age 35, another drop at age 37, and pregnancy chances significantly reduced after age 40. IVF success rates similarly drop after age 35. This varies amongst women - in some cases it could be sooner, in others later, but the one common theme is that most have absolutely no idea how fertile they are. Men also are a far larger part of the equation than people realize – a third of cases relate to solely male fertility issues.

So what's the biggest surprise? It is the amount of misinformation that exists in society. How often men and women really know very little about their own fertility.

This is reinforced by a University of British Columbia study reported last year in the Journal of the American Society of Reproductive Medicine, which highlighted that while women were aware that fertility declined with age, they were not aware of the extent to which it declined concluding that this lack of education was leading to an increase in the number of unintentionally childless women. Yet fertility seems to be something which even well-informed people are reluctant to discuss for fear of offending. The question is why? Why does this misinformation exist?

Mis-education and misinformation to a large extent comes from the media. They are focused on sensationalist headlines, such as ‘Woman of 50 gives birth to twins’ or ‘celebrity X becomes mother at 45’. They fail to report medical facts accurately, or without spin. They should report the statistical likelihood of such a pregnancy happening with one’s own eggs, to give a real sense of the (low) probability of it happening or if donor eggs were used. They misleadingly give the impression that IVF cures all infertility issues.

Women who have suffered or are suffering from fertility issues can add to the lack of information by not sharing the knowledge they obtained with others. Many suffer embarrassment or shame to admit a problem. Some do not wish to receive negative feedback. Others develop ‘rose-tinted spectacles’ after a successful birth, forgetting their troubles. I was amazed at how many women suddenly shared their stories, but only after you started to tell yours. It is only through sharing honest accounts that we get the correct information and start to really ‘get it’.

People may expect their families to ask about plans for children and talk about such issues. This is not always the case, particularly in this modern world where often parents are scared or do not want to be ‘too involved’ in children’s lives. Today many take the approach with their adult children of, ‘I don’t interfere’. Parents may not share relevant medical information relating to their own fertility. Some feel that they don’t have to, once children are adults. Yet ironically as children they were probably too young to appreciate the information’s relevance.

Assumptions that people make about working women can be very alarming. If they see her working with dedication to her job, they assume she is a career-girl not interested in children, even if she has not been asked or said anything along those lines. Assumptions are something people do often, to somehow ‘classify’ things in their heads, even if without the facts. It’s easier than asking questions.

Men also suffer from this misinformation. Because of it, they can equally delay starting or feel that a woman who talks about starting a family sooner is being ‘paranoid’ or ‘unnecessarily panicky’. Men should understand about their own fertility, and that of women, and vice versa. After all, it is a fifty/fifty equation, isn’t it?

With all these factors bouncing around, what can we do to grapple the issue by the horns and improve awareness?

Education can improve at various levels. Start at school with sex education classes extended beyond prevention of teenage pregnancy, to include knowledge of the changes in fertility with age. Improve the education of GPs - surprisingly, these can sometimes lack understanding on the extent that fertility declines with age. GPs should be required to have fertility conversations with women at contraception checks to ensure they’re properly informed. The same should be done at gynecological checks. Regular fertility checks should be promoted.

Employers should be encouraged to be supportive of women in their more fertile years, so that they feel they can return to work without risk. This needs positive affirmation from employers beyond relying on legislation. It would be good to see employers embrace fertility awareness days in their organizations.

We can encourage people to speak more openly about fertility to foster improved education and awareness and remove the stigma of discussing. In the States, Giuliana Rancic and her husband are pioneers with their openness on their troubles to conceive whilst in the celebrity spotlight. After speaking to some of those who said ‘you have plenty of time’ previously, I was surprised at how receptive and onboard they were to change how they spoke going forward. And even if they aren’t immediately receptive, at least the seed for thought is planted. So we can do it, starting with our everyday exchanges.

Information needs to be relayed in an intelligent fashion. Intelligent people need to be spoken to intelligently. Statements such as ‘You don’t want to leave it too late’, leave only an impression of feeling nagged. People are much more likely to listen if you speak to them with clear facts. For example, that it could take 5 or 6 months to get pregnant for a woman age 30, compared to nearly 2 years closer to age 40. That chromosomal defects increase in your thirties. That miscarriage risks increase with age, being about 1 in 5 at age 35. That IVF success rates similarly decline after age 35.

It isn’t about creating fear amongst people. There will always be a need for IVF for a variety of reasons. But it is about stopping avoidable instances of infertility; to put more people with infertility in the age bracket (below 35) with the best chance of success in treatments. That has to be a good thing – less financial cost to couples, reducing the turmoil that comes with the uncertainty of fertility treatments, and reducing any health side-effects which may come as a result of fertility drugs.


http://theafa.typepad.com/theafablog/2010/07/infertility-prevention-from-a-personal-perspective.html - see AFA blog posting of the same

Why a blog about age and fertility?

There are lots of blogs out there sharing wonderful information about things to do to preserve your fertility over 35, and success stories of women over 40 told they would have a hard time conceiving and carrying term. I read them all - they are truly great sources of information, on herbs and vitamins that you can take, etc. I have learnt so much from them.

But you see, the thing is, women turn to this websites and blogs when they have either decided to have a family or when they have started to have problems. What I want to do, is come at the issue from the other end. Before couples start to try for a family. What do you need to know then?

Having been there myself, what is amazing is how little focus there is on information for men and women in that 'zone' of life. And consequently I want to highlight that area as one of special interest and attention. Education on our own fertility needs a massive spotlight on it because we are letting each other down by not making sure we are all properly educated on basically 'how we work'. How does our fertility change withage. I heard/read somewhere this week that they are predicting that there will be one in four couples childless, very likely unintentionally.

My goal is simple - to try and stop the avoidable instances of infertility out there, so that there are less couples at risk of becoming unintentionally childless.