It tears every part of your life away: the truth about male infertility 1

It tears every part of your life away: the truth about male infertility

Men are facing a fertility crisis, so why is most practical and emotional support offered to couples struggling to conceive aimed at women?

It tears every part of your life away: the truth about male infertility 2

James and Davina DSouza met and fell in love in their early 20s. They got married five years later, and three years afterwards had saved enough to buy a family home in a quiet cul-de-sac in London. Then, when Davina was 29 and James 33, they started trying for a baby.

I knew that the moment we bought a home, wed start a family, Davina tells me in their living room, beside shelves crammed with framed photos of nieces, nephews, cousins and siblings. My parents live down the road, and if I needed help to raise a child, my mum would be here.

We thought about all of that stuff, James adds. The job, the future, the house, the home: we make things happen.

But after a year of trying, nothing had happened. Davina went to their GP, who referred her for the kind of invasive tests that have become the norm for women who experience problems conceiving: she had an internal, transvaginal scan to check her womb for fibroids, and an HSG test, where dye was pushed into her fallopian tubes to see if they were blocked. Everything looked normal.

It was only then that anyone suggested testing James. He had his semen analysed, and was told that only 1% of his sperm were formed normally. Still, it only takes one, the consultant said. She told them not to worry and to carry on trying. Two years after Davina came off the pill, James was tested again. This time, he had no normally formed sperm at all.

My first thought was, Oh, its my fault, James says, quietly. He stares at the coffee table through his thick-framed glasses. I felt helpless. No one was talking about this stuff. Youd go online and there was no male conversation. Id Google problems having a baby or fertility issues, and the websites that came up were all pink. Id post in a forum and women would respond on behalf of their husbands. There was nothing for men.

Though he may have felt it, James is not alone. Across the western world, men are facing a fertility crisis. A landmark study by the Hebrew University of Jerusalem, published in July, showed that among men from Europe, North America and Australia, sperm counts have declined by almost 60% in less than 40 years. Fertility specialists have described it as the most robust study of its kind (the researchers came to their conclusions after reviewing 185 previous studies involving 43,000 men from across the globe) and the findings are stark. Such a significant decline in male reproductive health over a relatively short period in such a specific population suggests theres something in the way we live now that means its much harder for men to become fathers than a generation ago.

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Until recently, the focus of both fertility experts and research scientists has been overwhelmingly on womens bodies, while male reproductive health has been almost ignored. For decades, the average age of both fathers and mothers has been increasing, but its women who have felt the pressure of balancing the need to invest in their careers with the so-called timebomb of their own declining fertility. They have been encouraged to put family first and to change their lifestyles if they want to become mothers, at the same time as male fertility appears to have fallen off a cliff.

Davina says the consultant gynaecologist who was treating her and James had no hesitation about next steps. She said, Jamess sperm results are in, and we think you should go for IVF. That was it. The NHS didnt have any other options for us. Indeed, the NHS couldnt even fund any IVF in their area at that time, so they had to scrape the money together to go private. They spent more than 12,000 on two rounds of IVF, and were finally offered a third round on the NHS this year. But after nearly seven years of trying for a baby, they are still childless.

IVF takes a huge physical, hormonal and emotional toll on a woman, James tells me. Sometimes I felt totally powerless, ineffective. I questioned my masculinity, my sense of myself as a man, through those rounds of IVF. During consultations, James felt the conversations were always directed at Davina. I felt like I had to say, Im here. Id deliberately ask a question to make my presence felt.

On their first round of IVF, someone at the clinic recommended James take a vitamin supplement. It was the first time lifestyle factors had been mentioned. That was when I realised, maybe there is something I can do, he says between slurps of his own blend of bulletproof coffee (made with grass-fed butter, coconut oil and egg yolk). James, head of sixth form at a local school, is a fan of self-help books. Hes been on a high-fat, low-carbohydrate ketogenic diet for months and says its done him good: hes slim and spry, but says he wasnt always this way. Hes wearing a digital fitness tracker. But as someone who rarely drinks, has never smoked and doesnt ride a bike, there were few lifestyle changes he could make, beyond taking colder showers and wearing looser underwear. Still, his sperm quality has improved.

At the moment, the couples fertility problems are unexplained. They decided against adoption when social workers said theyd have to use contraception during the process, because it wouldnt be fair on an adopted child to move into a home with a new baby, and they arent prepared to stop trying just yet.

Weve talked about when were going to call it a day, James says.

Davina glances at him with wet eyes. It makes me sad to think well be putting a cap on it.

But it regularly comes up, he says. We did actually say at the end of this year well stop. Ive been asking, Why do we want to have children? Weve decided it isnt going to define us.

There is treatment for male infertility, but its certainly not in the fertility clinic, says Sheryl Homa, scientific director of Andrology Solutions, the only clinic licensed by the Human Fertilisation & Embryology Authority to focus purely on male reproductive health in the UK. Men are channelled from their GP with a semen analysis and sent straight to a gynaecologist in an IVF clinic. But gynaecologists are interested in the female reproductive tract.

A former clinical embryologist, Homa once led IVF laboratories in both the private and public sectors. I was quite horrified by the lack of investigation and appropriate management of male infertility, she says, so I decided to start my own clinic specifically to focus on male fertility diagnosis and investigation. Male reproductive health is being assessed through semen analysis, which she argues has a very poor correlation with fertility. Instead of having their detailed medical history taken and a full physical examination, men are being given a cup and asked to produce a sample.

Homa says the leading cause of male infertility (around 40%) is varicocele (a clump of varicose veins in the testes). It can be determined from a physical exam, and can certainly be ruled out by an ultrasound scan. All women get ultrasound scans; why arent men getting them?

Varicoceles can be repaired by fairly simple surgery under local or general anaesthetic, leading to a significant improvement in a couples chances of successful natural or assisted conception. But many are going undiagnosed. The NHS is carrying out far too many IVF treatments when they could be saving money by doing proper investigations in men.

Homa says there is also some evidence linking silent infections those with no symptoms, such as chlamydia in men with delayed conception and an increased risk of miscarriage. But if a man is judged by his semen sample alone, there would be no way of addressing these hidden concerns.

Apart from saving the NHS money, there are important medical reasons why men should be thoroughly examined, Homa argues. Semen parameters are a marker of underlying systemic illness: they might have diabetes, they might have kidney disease, they might have cardiac problems. It could be something much more serious thats contributing to the problem.

As for the possible reasons for falling sperm counts across the west, Homa mentions all the chemicals and pesticides that we are exposed to in our environment, as well as smoking, rising levels of obesity and increasingly sedentary lifestyles. But at the moment, ideas such as these including hormones in the water and BPA in plastics that might mimic the effect of oestrogen inside the body are just theories that make intuitive sense. In the absence of widespread research over time, no one can pinpoint exactly which factor or combination of factors is making the difference.

In the 10 years her clinic has been operating, Homa has seen demand for her services steadily rise. She says she gets the fallout from men whove been sent by their GP for multiple rounds of fertility treatments that fail, when IVF should be the last resort. But at the moment, National Institute for Health and Care Excellence (Nice) guidelines give GPs no option but to refer men with fertility problems to IVF clinics. If theres a female problem, the GP will refer them to a gynaecology clinic. If theres a male problem, they need to be referring to a consultant urologist who deals with male infertility. But its just not happening.

Gareth
Gareth Down and his wife, Natalie, went through 10 rounds of IVF before their son, Reece, was born. Photograph: Harry Borden for the Guardian

In some ways, Gareth Down and his wife, Natalie, were lucky: they knew from the start that their problems conceiving were probably down to Gareth, because he had had surgery to remove benign lumps on his testes as a teenager, and always feared they might interfere with his chances of becoming a father. But after 10 cycles of IVF that cost them tens of thousands of pounds, and several miscarriages, lucky doesnt feel like the right word.

I always wanted kids, says Gareth, 31. My mum was a childminder, and I was brought up looking after kids, so from as young as I can remember, weve had a house full of them. He and Natalie started trying for a baby six months before their wedding in 2010, and went to the GP a year later, when nothing had happened. Gareth was referred to a urologist, who confirmed that the surgery hed had as a teen had affected his sperm production, and that he had azoospermia: a zero sperm count.

The Downs were determined to have children, but trying almost broke them. It invades every part of your life, Gareth says. On a personal level, you have to confront the fact that you might not have a family. It affects you financially, as you try and save to fund the treatment. We had family fallouts because we couldnt see newborn nieces and nephews we just couldnt be around babies. We changed jobs because time off with certain employers was difficult. I had quite a customer-facing job at one point, and when they were telling me about their problems, I was thinking, You aint got problems. He pauses. I dont think there was any part of who we were that we held on to by the end. It tears just about every part of your life away.

Gareth has just put his 16-month-old son, Reece, to bed while Natalie is still at work. Reece was conceived with donor sperm, on their 10th round of IVF, when Natalie had had enough of the heartache of fertility treatment and was convinced they should give up. After going through so much to have him, their first feeling when Reece was finally born was not joy, but disbelief. It was surreal, says Gareth. I dont think either of us could accept it was real and going to last. Wed had so many ups and downs that we couldnt believe nothing bad was going to happen. We kept checking the cot to see if he was still there. It was weeks before we realised he was not going to be taken away from us.

It was during their final attempt to have a baby that Gareth set up his closed, men-only Facebook group, Mens Fertility Support. Over the years, Natalie had found a lot of comfort online, from forums and support pages to Facebook groups, and was surrounded by an international community of women going through the same experience. Gareth had tried to contribute in the same places, but never stuck around long. There were no other men there to relate to what you were saying, or make you feel you could say what you meant and that it wouldnt be taken the wrong way by an audience that vastly outnumbered you.

The 300 or so members of his group are a diverse mix of men, mostly from the UK. Some are just beginning to have problems with conception, others went through it decades ago; some never had a happy ending and are there to share their experiences that a life beyond trying to have a family is possible. Many members say its the only place they can be totally honest: the belief that the ability to father children is a marker of masculinity has left many unwilling to talk about their issues anywhere else.

We do get women wanting to join, Gareth tells me with a smile, but we want a degree of privacy. Its about having freedom to talk, to say, yes, those [IVF] hormones really do screw her up and its really tough. You need to be able to vent somewhere without causing offence to anyone you know.

Everyone Gareth and Natalie told about their problems conceiving assumed the issue must be hers. Every step of the way it was, Poor Nat whats going on with her? But he hopes that men are starting to seek help. If it was any other part of your body that wasnt working properly, youd seek advice. Slowly, those barriers are beginning to come down a bit.

He wonders whether the new figures on declining sperm counts could have been coloured by this growth in awareness: fertility treatments are more in demand than ever, so more men are having their fertility investigated. Are we just testing more, looking into things more? he asks. If you had fertility problems 40 years ago, you wouldnt have wanted to confront it or had anywhere to go with it.

Dr Xiao-Ping Zhai, the fertility specialist behind the Zhai Clinic, agrees. We never really tested men in the past, and if you use the word decline, you have to have something to compare it to. In the past, people probably had problems, didnt want to say they had problems, and didnt have children. Even though the Hebrew University of Jerusalem study is the best piece of research weve had so far, she points out, the data from 40 years ago is still very thin.

Trained both in western and traditional Chinese medicine, Zhai has a unique perspective on fertility treatment and, since she opened her Harley Street clinic more than 20 years ago, claims shes had a great deal of success in helping couples conceive even though many patients come to her out of desperation rather than faith in traditional medicine. Its mainly women who call to make the appointments. Eighty per cent of the time, the partner doesnt even want to come along. They dont think they have a problem.

Rather than look at sperm counts, Zhai takes a full health MOT of all her patients, using diagnostics from Chinese medicine to find out which part of the body needs to be addressed: You find that a lot of people have something that cant be discovered on a scan or through mechanical investigation what wed call a functional problem. Zhai offers a range of treatments according to the patients specific constitution, including acupuncture, herbal supplements and advice on lifestyle changes and diet. None of this is cheap: an initial consultation costs 250, and a four-week course of bespoke herbal supplements can cost up to 350.

But IVF treatment on Harley Street costs even more, and Zhai says many of her patients arrive in the consulting room having already spent lots of money. Its to do with the culture here: in the UK, if a man has a problem, then the woman needs IVF. IVF clinics can offer only what they specialise in.

In 2014, Zhai launched a national campaign to end the stigma attached to male infertility and improve the treatment choices offered to men. She called for a full parliamentary debate on male fertility issues, and on health secretary Jeremy Hunt to work with doctors to improve practice and treatment pathways for men within the NHS. But there has been no debate and no change in NHS strategy. There are too few options for infertile patients, Zhai says. It will take a long, long time to overcome this culture.

Gary
The doctor who rang with Gary Parsons sperm count results simply said it was game over. Photograph: Harry Borden for the Guardian

Gary and Kim Parsons went to their GP two years after Kim stopped taking the pill, when there was still no sign of pregnancy. She went through all the regular tests blood tests and then more invasive examinations and everything came back A-OK, says Gary, 36, from his home in Burnham-on-Sea. Then it was my turn. Like James, Gary had no physical examination and was asked only to produce a sample to check his sperm count. That came back as a big fat zero. There was nothing to count.

When the doctor rang to deliver the results, he said it was game over. Gary blinks in disbelief when he tells me this. I really didnt need any encouragement to feel more down about things, so that was an unfortunate turn of phrase. Gary thinks this may have been because it was a conversation between men. That extreme, direct way of communicating might have been the only way he thought he could get me to understand that this is not something where I could drink a kale smoothie and everything would be OK.

Still, thats what Gary tried, at first. Or, rather, he turned to vitamin supplements and a high-protein diet in the hope they could help. Im a vegetarian, so for a second I thought, Oh no, Im one of these anaemic, lentil-based stereotypes. But, ultimately, he knew this probably wouldnt help because his count wasnt low it was zero. There was nothing to improve. Thats the thing Ive found hardest. Most problems Ive had in my life Ive overcome with either bloody-mindedness or effort, and thats not this, he says, shaking his head. Thats not this.

Garys infertility remains unexplained. The next step is for him to have a testicular sperm extraction procedure, to find out if hes producing sperm that are being blocked, which could potentially be extracted for use in assisted conception. Three years after they started trying for a baby, this will be the first time he will be examined beyond blood tests and semen samples.

Without Gareth Downs Facebook group, it would have been hard to find someone to talk to. Gary is a counsellor, and when he looked at who was registered with the British Infertility Counselling Association, the professional body for fertility counsellors in the UK, he found that the 46 registered practitioners were all women. Emotional support provision for men is glaring in its absence, he says. Its just a case of, On your bike, son. Get on with it.

The way that men are treated as the secondary partner in infertility treatment could have worrying consequences, he says. All the paperwork goes through the female. Everything is done through my wife. In meetings, its been very rare that Ive even been able to get any eye contact from a consultant so far. It occurred to me that, should my wife leave me, I would have no mechanism for resolving this, or getting any questions answered, and that would have an impact in terms of maybe meeting someone new, or even knowing if Im able to be a parent one day.

Edinburgh University professor Richard Sharpe, an expert in sperm count and male fertility, believes the University of Jerusalem studys findings should be taken very seriously. If something is having that big an effect something in our environment, diet, lifestyle, and we dont know what it is what else might it be doing to us? We think of sperm counts as a fairly crude barometer of overall male health. Its a warning shot across our bows.

Sharpe has been specialising in male infertility for 25 years, but even he can offer only general hypotheses about what could have made sperm counts fall by 60% in little over a generation. He thinks diet and lifestyle are much more likely to be contributory factors than environmental chemicals such as pesticides, plastics and hormones in the water, because the evidence that they could induce such striking effects at low levels of exposure is unconvincing. But our understanding of the normal process of sperm production is very poor, completely superficial, he says. Its a much more complex process to understand than the menstrual cycle, and we havent done enough research.

There is a chance that women might ultimately be behind the sudden drop in sperm count, Sharpe believes. His work has looked at the link between rates of maternal smoking and the use of painkillers during pregnancy, and the reduced sperm counts of sons in adulthood. A baby boys testes are formed during the first trimester, when many women dont know theyre pregnant, and the period immediately after their formation is critical for the production of testosterone. What we are seeing now could be the expression of a generational problem: the fact that, since the 1970s, women are more likely than ever to smoke and take over-the-counter painkillers.

But, again, the evidence isnt strong enough. There are four studies that all show a significant association between maternal smoking and reduction in sperm counts in male offspring, so its plausible, he says, but it cant explain the 60% fall, because not so many women smoke and smoke heavily. A longitudinal study, over 20 years, would be needed to demonstrate the effects of maternal lifestyle on male fertility, but long-term research projects are inherently difficult to get funding for, unless public bodies think the issue is critically important. Male fertility is not considered a high-priority issue, partly because theres this perception that its a problem solved by assisted reproduction. Thats not treatment of the underlying issue behind male infertility. Its simply ignoring it.

We may be sleepwalking into a future where we become increasingly dependent on assisted reproduction, Sharpe argues, without fully understanding the long-term consequences of the technologies were relying upon. Researchers have already demonstrated in animals that its possible to make sperm out of other kinds of cell. People are going to do this in humans not in the UK, initially, but they will somewhere in the world. Those techniques are going to be applied in the fertility clinic, but we dont have the knowledge to do it in a truly informed way, to know that its all safe, that there are no consequences.

Whatever the reasons for our underinvestment in male fertility lack of funding and research, male pride or the overemphasis on women in fertility treatment it has huge implications for both men and women. Were flying blind to a large extent, and so far weve been ridiculously lucky, Sharpe says. Its a perfect storm, at every level.

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Read more: https://www.theguardian.com/lifeandstyle/2017/nov/18/tears-every-part-life-truth-male-infertility-ivf

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