WHAT EVERY MAN AND WOMAN IN THEIR TWENTIES AND EARLY THIRTIES SHOULD KNOW.

Thursday, October 14, 2010

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'.

Monday, October 4, 2010

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....

Monday, September 27, 2010

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

Monday, September 20, 2010

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!

Sunday, September 12, 2010

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"

Monday, September 6, 2010

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.

Saturday, August 28, 2010

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


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.