Infertility: the last great taboo

I was reading the Irish Times today and in the health supplement this headline stood out: “Infertility:the last great taboo”.

Leaving aside the fact that a lot of things are supposedly the last great taboo, there is certainly a lot of truth to the taboo aspect. We just don’t talk about it  freely in society. Because it is such an emotive subject, many couples find it difficult to discuss what one writer has called ‘the baby-shaped hole in their lives’.

Without a doubt it is the last great taboo, says Prof Robert Harrison. “No one speaks of it. Maybe a woman will talk to a close friend if she’s worried. But it is such a private issue. It’s one even close friends won’t ask about. It goes right to the heart, I suppose, of who we are as adults and why we get together.”

To be infertile gives rise to feelings of failure, of sexual dysfunction. Author Martina Devlin, who has written of her own experiences of infertility and unsuccessful attempts at treatment, said on the issue last week: “It leaves you with a big R’ stamped on you, for rejection.”

Speaking at the publication of two reports by the Women’s Health Council (WHC) on issues surrounding infertility, Devlin spoke of the mourning couples did “behind a wall of silence”.

“There is so much grief and exclusion and disenfranchisement.”

Since she wrote about her infertility some years ago she is still regularly approached “mainly by women”, she said. “They look happy and glossy and as if they have everything they want in life, and they just want to talk to someone about the baby-shaped hole in their lives.”

It was a testament to how hidden and unspoken an issue infertility was that people were willing to talk to a stranger about such a personal issue, she said.

“Society in general fails to comprehend what it’s like to be childless. People feel it’s tactless to say anything to people they suspect may be struggling with infertility. People stay silent.”

It’s not surprising then that a couple, worried they can’t get pregnant, feel utterly ill-equipped to know where to start, what treatment to seek, how long it will take, the financial and emotional toll it will exact and, indeed whether they even should seek treatment at all.

Infertility affects one in six Irish couples. It was defined by the World Health Organisation in 2001 as “failure to conceive after at least one year of unprotected intercourse”.

Studies indicate 80 per cent of couples having regular intercourse will conceive within a year and 70 per cent will have a baby.

Factors such as age and health will play a role and older couples should probably not wait as long as a year before seeking help.

Harrison, obstetrician, gynaecologist and founder of the Human Assisted Reproduction unit Ireland (Hari) at the Rotunda Hospital, Dublin, has written a book The Smart Guide to Infertility , to help couples.

Now retired from Hari, he says there is a particular pressure in a Catholic, family-oriented culture such as Ireland’s, to have children.

“There is pressure here and in Arab cultures. Children are seen as the natural next step after a couple have got together and stayed together for a number of years.”

The only published survey of couples affected by infertility in this country, a 2005 study of 129 such couples by the National Infertility Support and Information Group (NSIG), found 87 per cent of them felt under pressure to have children.

It also found 63 per cent felt unable to discuss their infertility with family and 58 per cent were unable to discuss it with any friend, pointing to the isolation many couples feel.

Such findings underline, says Harrison, how important both counselling and accurate information are for any couple considering fertility treatment, given the lack of any in general circulation.

“Any couple’s first port of call should be their GP and they should let the GP know in advance what the consultation is about. These consultations take time.”

In the Hari unit, he says, there is great emphasis on counselling at the beginning and throughout the whole process. The fact that couples feel under social pressure to have children is an important issue, he says.

“The counsellor will work out whether the couple is ready or suitable for treatment, and indeed for children.

“Infertility is a couple’s problem. My book stresses that. It is so important. It is not a woman’s issue or a man’s issue, and both in the couple must be dedicated to wanting to have a child.”

He says the journey of treatment can be so long and stressful that couples can only hope to get through it if they are well prepared for – and prepared to – go through it.

Though many will associate fertility treatment with in vitro fertilisation (IVF), the book is an encyclopedic testament to the fact there is much more to it.

Harrison says IVF is likely to be the last course embarked on. There will be investigations of both the man and woman and the answer may lie in simply taking medications to stimulate ovulation in the woman, or sperm production in the man. Tubes may simply need to be unblocked.

“However, answers are not always clear cut and responses to therapy may be unpredictable and disappointing. No guarantees may be given,” he says.

A fact many couples seeking help must face is that infertility is not always “fixable”.

“It is a sad fact that even with today’s advances one in 20 will be consigned to a meaningless non-diagnosis of unexplained infertility.”

Just one in three couples who embark on IVF will be successful, he points out, and the odds decrease as the woman in particular gets older.

An area often forgotten is how difficult it can be for some couples to decide not to continue with treatment.

“You go in with such high hopes and if after three cycles of IVF and still there’s no baby, some couples might want to try another clinic or another treatment. It must be so difficult. I almost feel it’s like cancer treatment at that point.

“You have to weigh up the costs in terms of money, time and psychological toll, as against the quality of life issue.

“There is a quality of life to be had out there without children. I know that is easy for me to say who has children, but to find you are continually banging your head off a brick wall, without success, it must be soul-destroying.

“I think help is so important for couples in that position. It can become a millstone around your neck and people can isolate themselves, avoiding friends who have children.

“If treatment is unsuccessful you have to learn to accept and live with it. Losing the hope of a baby is like losing a loved one.

“The pain never fully goes away, but you take it on as part of who you are.”

Successful couples also need counselling. Pregnancies as a result of fertility treatment tend to be much more stressful he says, as the couple are more nervous about such issues as miscarriage and other problems.

Asked about the absence of legislation regulating the 10 fertility clinics in the State, he says it is “appalling” that the 40 recommendations made in 2005 by the Commission on Assisted Reproduction have not been acted upon.

Ireland is one of three EU states with no regulation of infertility services. The others are Poland and Romania. The only guidance available to clinicians are the Medical Council’s ethical guidelines, published in 2004.

He understands the Department of Health is drawing up guidelines but not legislation. The obstacle holding things up, he believes, is an awaited Supreme Court judgment on the fate of frozen embryos. “I think they really need to grasp the nettle and make a decision.”

Devlin, in her remarks during the week, spoke of her frustration at delays in legislation.

“It’s too important to leave it to individual clinics to self-regulate. There is a lot of talk about the protection of embryos. Well, the adult human beings need protection too.

“Infertile people already feel second-rate, feel substandard. Don’t let society institutionalise this. Don’t let’s continue to look the other way, in silence.”

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7 Comments (+add yours?)

  1. sallyjones
    Sep 30, 2009 @ 12:05:14

    i absolutely agree that infertility is a huge taboo and that just makes it all the harder for those of us dealing with it,

    Reply

  2. Jane
    Oct 01, 2009 @ 09:28:11

    I think a lot of the time people say nothing because they just haven’t a clue what to say, and they’re afraid of saying the wrong thing and putting their foot in it. But it does lead to infertile people feeling seriously isolated, as I have felt in the past.

    Reply

  3. pamela
    Oct 01, 2009 @ 13:02:50

    Thank you for higlighting this issue – it is important that we get it out into the open more

    Reply

  4. maryj
    Oct 01, 2009 @ 13:03:36

    the only place i don’t feel stigmatized is on forums like this!

    Reply

  5. iamstacey
    Oct 02, 2009 @ 19:06:44

    I think it makes people uncomfortable, like death. They just don’t know what to say. No one wants it to touch them, you know?

    Reply

  6. Lorna
    Oct 04, 2009 @ 14:16:55

    I agree that many people find it hard to talk to family and friends about it. Martin from the X box for nappy rash blog wrote anonymously for 2 years and eventually ‘came out’ to find that he received great support from family and friends but personally, I prefer that very few people know – for some reason, it helps me feel more protected against comments and people watching for my reaction. – if that makes sense!
    I agree with Iamstacey’s comment – people feel uncomfortable, not sure what to say. It’s really only if you have gone through it that you can have some empathy too I think.

    Reply

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