IVF: An Emotional Companion

ivf

An

Emotional

Companion

BRIGID MOSS

Contents

Cover

Title Page

Introduction

Why I had IVF

Polycystic ovaries stopped me ovulating

My partner had no sperm

I had premature ovarian failure

I couldn’t give my son a sibling

Cancer affected my fertility

I’m a single mother by choice

I’m in a same-sex couple

Making the right choices

How I found the right clinic

Having IVF at 40+

I was only allowed one embryo transferred

Ovarian hyperstimulation could have killed me

I had reproductive immunology

Why I used an egg donor

My experience of surrogacy

I got pregnant naturally after IVF

Surviving IVF

My twin IVF pregnancy

IVF could have ended my relationship

Therapy got me through IVF

My friends and family got me through

My experience of miscarriage

Why I finally stopped IVF

I moved on to a child-free life

Why I adopted after IVF

Afterword

Further reading

References

Index

Acknowledgments

Copyright

About the Publisher

Introduction

• • • • • • • • • • • • •

Idon’t know how long you’ve been trying for a baby, which fertility investigations or treatments you’ve had or what your chances are now of getting pregnant. You could just be thinking about having IVF, you might be a veteran IVF-er who’s had multiple cycles, or you may be about to start out on your first cycle. Wherever you are on your IVF journey, this book is for you.

If I think back, I can still remember the feelings of inadequacy, shame and loneliness that I had when I couldn’t get pregnant. That was my motivation for writing this book, a collection of stories from 22 amazing women who are sharing them because, like me, they remember how it feels to be among the one in six couples who experience infertility. Each one of them volunteered to tell her story because she wanted to let you and others know that IVF can be hard, but that you can get through it.

When I was first told I’d need IVF, almost six years ago, aged 35, I couldn’t talk to anyone about my fertility problems. Writing this book — admitting my infertility to everyone — and speaking to the women whose stories are told in these pages has been liberating for me. As one woman said to me, ‘IVF and infertility need to be brought out into the open. Nobody should be ashamed any more.’

But back then, I didn’t want anyone to feel sorry for me or pity me or gossip about me. I didn’t want friends to think they couldn’t tell me when they got pregnant easily. And I didn’t want my mum to be sad for me or worry about me. Adam, my husband, was a great support because, as a lifelong optimist, he always believed we’d have our family in the end.

I loathed the hours spent waiting for fertility appointments in gloomy NHS corridors; and the appointments themselves were gruelling and made me feel very vulnerable. If you’ve ever had an HSG (an hysterosalpingogram, which examines your womb and Fallopian tubes using a dye that shows up when your abdomen is X-rayed), you’ll know why I walked out of the examination room when I saw the huge machine I was being asked to lie on, naked from the waist down. Most of the doctors were good at explaining things, and kind, but I still felt like crying at every appointment, just because I felt so sad and powerless. There were times when I couldn’t face yet another internal examination (one of the women in the book made me laugh when she said, ‘I automatically take off my knickers now as soon as I get into any doctor’s examination room’).

Hormone tests and cycle monitoring showed my cycle was regular and I was ovulating, but the HSG showed my tubes might be blocked. Two years after I first went to the GP, I was booked in for a laparoscopy (a keyhole operation: a camera is put inside your abdomen via an incision under your tummy button). The surgeon discovered my tubes were blocked, and that I had adhesions, bands of tissue stuck to my internal organs, possibly due to a pelvic inflammatory disease that I’d had a few years earlier. Your tubes are so tiny and delicate, they can easily be damaged by infection and by adhesions.

At this point, I was finding it hard to concentrate on anything but my fertility. I could cope pretty well with seeing pregnant friends (of course, this was the exact time lots of friends chose to procreate), but I was beginning to feel bitter towards innocent pregnant strangers in the street. Infertility brought out the nastiest part of me, and altered my perception of the world, so that having a baby became the only thing that counted. I spent hours obsessing over the next test, the next result, preparing for the next treatment, wondering what might make it work or even if I’d magically get pregnant naturally.

The months between NHS appointments dragged on and on. Six months after the first laparoscopy I had another one, this time to clear away the adhesions and attempt to free up my tubes. It didn’t work. Another six months later, and I saw another consultant. He looked at my notes, pronounced me a perfect candidate for IVF and referred me on to the NHS IVF waiting list.

I was nervous, as IVF sounded so medical and invasive, but frankly, after three years of blood tests, scans, internals, laparoscopies and waiting, I was relieved to be getting to that next stage. And what was cheering was that although IVF is now used for a whole spectrum of fertility problems — polycystic ovaries, failure to ovulate, endometriosis and malefactor infertility — it was actually invented to bypass malfunctioning tubes like mine.

As the NHS waiting list for IVF was a year in our area at the time, and I was by then 35, we decided we’d better get on with having IVF privately. My mum kindly gave us some money towards it, and we scraped together the rest. I went to see fertility expert Zita West, who talked me through the pros and cons of the many London clinics.

Another six months later, I was at my first appointment at the ARGC — the Assisted Reproduction & Gynaecology Centre in London. But just when I was ready to start my first IVF cycle, a doctor there scanned me and told me that my tubes were full of fluid due to having been blocked. He said that this could stop the IVF working, as the fluid can go into the uterus and prevent the embryo from implanting. Another gynaecologist agreed and said that my tubes and the adhesions around them were probably causing my awful period pains too. So I had another operation — this time to remove my tubes. It was a very final decison to make, and one I have occasionally regretted since. From that point on, IVF would be my only method of ever getting pregnant.

That’s when I first found the Fertility Friends website, which has a forum for the ARGC, among other clinics. At first I just read other women’s conversations but one day, once I’d finally started IVF, I joined in, asking, ‘What does it mean that my left ovary is showing more follicles [the sacs that contain the eggs] than my right?’ And, a few days later, ‘Does anyone else feel twinges in their ovaries during stimulation? Or get spotting?’ I liked that lots of people replied, and everyone supported each other, cheered each other on and commiserated, really knowing what it felt like when things didn’t work out. My online fertility buddies were there for me during IVF, at all hours, day or night, ready with a quick boost or supportive comment. One woman who was always helpful on the forum was a GP called Alice, who is still a friend today (and whose story is told in Chapter 12).

It became clear to me that some people who hadn’t been through infertility or IVF often didn’t ‘get it’. Toni (see Chapter 3) explains it like this: ‘People who haven’t experienced infertility don’t understand how it takes over your life, how sad it is that a vision you had of your life has been taken away from you.’ It was hard having to explain every step in the IVF process to friends and family, even when they were being loving and wanted to support me. I was lucky because at work, my boss and close workmates were kind too, asking me how things were going every day.

The actual treatment was hardcore and physically demanding. At the ARGC, for the roughly two weeks that you’re injecting drugs to stimulate your ovaries to produce eggs, you have a blood test every day at 7 a.m., sometimes two, and scans every other day too. I still can’t drive near the blood clinic in Harley Street without feeling my stomach tighten. There was a lot of waiting around for scans and appointments at the clinic too. The waiting room was filled with an air of desperation mixed with camaraderie. People were in awe of Mr Taranissi, the head of the clinic, and talked about ‘Mr T.’ in reverential tones. I joked later that the chairs shouldn’t have been around the edges of the waiting room, but all in lines, as if we were praying to Mr T. Often, I’d chat to a neighbour about our treatments and I’d feel quite lucky, because while I was on my first cycle, others were on their third, even fifth.

I had nine eggs collected in the end (I always think egg collection sounds more like a country pursuit than a surgical procedure). One of these went on to become my gorgeous, now four-year-old, son Patrick. I was nervous while pregnant, even though everything was textbook. And I’m still, to this day, a much more neurotic mother than I would ever have imagined I’d be; taking so long to have a baby changed me, in that way, for ever.

When Patrick was two, we decided to try again with our two remaining frozen embryos. But I didn’t get pregnant. I had always said I’d be happy with one child, that I wouldn’t have another fresh IVF cycle, but found I couldn’t ignore my longing for a second baby, a sibling for Patrick. So we started a new cycle a year later. During a scan leading up to egg collection, I was upset as my eggs weren’t developing evenly on each ovary (I was pretty overwrought generally, at the time). The doctor said to me, ‘I have women in here who would be very grateful to be in your position.’ And I felt quite ashamed.

This time, the result was a biochemical pregnancy. So while at first I did get a positive pregnancy test, for a week my blood levels of beta hCG (the hormone you produce when you’re pregnant) stayed the same, and then they started to fall — a sure sign that the pregnancy was over. That was torture. I was bowled over at how hard it hit me. I was already exhausted from the sheer emotional stress and hormone overload, and from juggling appointments with work; I just wanted to curl up under my duvet and hide.

When Adam and I talked about doing IVF one more time, we didn’t know if we could go through with it, and we certainly couldn’t afford it. Mum asked me, ‘If you had enough money, would you have another treatment?’ And when she put it like that, I knew I would. ‘Never let a lack of money stop you from doing anything,’ she said. Her financial help and writing this book (ironically) paid for our next treatment, when I was 41.

That time, we did get pregnant, but, sadly, I lost the pregnancy one day off 16 weeks (that story is in Chapter 20). After a miscarriage, and indeed if you can’t get pregnant, the world can seem full of pregnant women and babies, reminding you constantly of what you don’t have. Just after my miscarriage, an old friend called out of the blue to say that she was almost the same number of weeks pregnant as I’d been just a few days before; while back at work, a month later, three pregnant women got in the lift with me at the same time. I was a mess for a month and cried every day for the following two.

Now I’ve accepted I’m the mother of a single child and I do feel extremely lucky for that. At the same time, I’m sad that my son is growing up without a brother or sister. I don’t want him to have the whole weight of my expectations, or the whole responsibility of us when we’re old. On the upside though, we’re a very portable family, Adam and I have lots of time for Patrick and he is a very happy and loved child.

Our mothers and grandmothers didn’t have the medical options we have today to ‘cure’ infertility. Then again, for the most part, they did start trying much younger too, so there wasn’t, like there is now, an army of women in their late 30s and early 40s feeling let down by their biology.

Medical science not only gives us hope, but also a huge range of options and decisions, with new breakthroughs being announced every month. Often, however, that also includes the chance to spend an awful lot of money with only a limited chance of success.

What I learned from my own experience, more than anything, is that not getting pregnant is about making decisions. Lots of them. And often, these are involved and technical. For me, first, it was, should I push my GP to refer me for investigations after a year of trying or wait another six months? Then it was which IVF clinic is best — should I go to a clinic that has slightly better results, or one that provides more personal attention, or one that’s closer to home? Even as a health journalist, the amount of information that’s out there seemed overwhelming. Every decision was emotionally charged, as every choice could in theory make the difference between having the longed-for baby — and not. The final decision that my husband and I had to make was: is it time to stop treatment? Financially, it was just about impossible for us to continue, but emotionally, I reasoned, did I really want to put all of us — including Patrick — on to the IVF rollercoaster again when our chance of success was so low?

Every woman in this book has had to make these kinds of decisions, and has made them in her own way. Their stories are not supposed to be a practical guide — there are plenty of other books out there fulfilling that need (you’ll find recommendations at the end of each chapter and in the Further reading section on page 311). Rather, they are intended to show you what others have done in the situation that you are in, what it felt like for them and how they made their decisions along the way.

My day job is Health Editor of Red magazine, and the inspiration for the book came from Red’s Annual National Fertility Report. I wrote it in the period from a few months before my final IVF cycle to a few months after the miscarriage.

All the women I interviewed taught me something that helped me in my final cycle, or that has stayed with me. For example, Amanda (see Chapter 1), showed me that you can choose to see IVF failure as a nightmare or you can view it as a learning experience for the next cycle. Oona (see Chapter 18), taught me to accept that, during fertility treatment, it’s normal for your emotions to be overwhelming. And lastly, Sinead (Chapter 9) helped me realise that when you don’t get what you want, you should still be thankful for what you do have.

Hopefully, this book will show that for every desperate moment, for every heart-breaking test result and for every difficult decision you face, someone else has probably been there before you. And she’s here — and happy — to tell her story.

Why I had IVF

• • • • • • • • • • • • •

‘I was ovulating, but not getting pregnant.

And I desperately wanted to know why.

It was so frustrating.’

‘All babies are miracles, but IVF babies are real miracles.’

‘My mantra was: “As long as there’s one egg, I can get pregnant.”’

‘After three IUIs in four months, I started

pushing the doctors to recommend IVF because

the success rates are so much better than IUI.’

‘When I looked at him, he was the person whose

biological children I wanted. I wanted a mini

Nick running around, not to have to think about

using somebody else’s sperm.’

Polycystic ovaries stopped me ovulating

• • • • • • • • • • • • •

The symptoms of PCOS all directly attack your femininity: facial hair, spots, weight gain. But the worst one of all is lack of periods and the resulting infertility,’ says Theresa Cheung, co-author of the book PCOS and Your Fertility, who herself underwent medical treatment to conceive her two children. ‘Getting pregnant felt like something I should have been able to do as a woman. It seemed so easy for other people. But I had to accept that it wasn’t going to happen for me naturally, that I needed medical help,’ she says.

As the most common hormonal disorder for women, affecting up to 10 per cent, PCOS (polycystic ovary syndrome) is a major cause of fertility problems. As you may know, with PCOS it’s not that you’re not producing eggs, it’s that you don’t actually ovulate, which leaves your ovaries filled with follicles that have failed to launch — the so-called ‘cysts’. ‘The hormonal environment in the ovaries isn’t conducive to ovulation,’ explains Mr Tarek El-Toukhy, Consultant and ‘

Honorary Lecturer in Reproductive Medicine and Surgery at Guy’s and St Thomas’ Hospital NHS Foundation Trust.

It’s now generally agreed that lifestyle is key for controlling PCOS symptoms, and healthy living can help to regulate your cycle. ‘Weight loss, if the patient is overweight, and exercise can both decrease the intensity of polycystic ovaries, and we see a lot of success just by doing this,’ says Mr El-Toukhy. Theresa agrees: ‘My symptoms — including a lack of periods — come back if I’m not taking care of myself by eating badly or not exercising enough.’

If you have PCOS, you’ll probably have had months, possibly years, of medical treatment by the time you reach an IVF clinic, usually starting with a drug treatment: one to induce ovulation, such as clomiphene (Clomid), and/or metformin, a drug used to treat diabetes. If this doesn’t work, the next line of attack is often an operation called ovarian drilling (this is exactly as it sounds). ‘We don’t know precisely how this operation works, but it could be related to the release of chemical substances within the tissue of the ovary, contributing to changes in the local hormonal environment and stimulating ovulation,’ says Mr El-Toukhy. Next comes IUI (intrauterine insemination — where sperm is put into the uterus around the time of ovulation), using the same ovary-stimulating drugs as IVF and, finally, IVF (although a lot of women choose to go straight from Clomid to IVF).

• • • • • • • • •

Amanda, 35, a public relations director from London, only found out she had PCOS when she came off the Pill. When ovulation-inducing drugs didn't work, she started IVF.

I had no idea that I had polycystic ovaries until my weight ballooned when I stopped taking the Pill. I went from a size 10/12 to a size 16 in a matter of months. I’d been on the Pill since I was 17, when I first got together with Adam. By my late 20s, I wasn’t happy that I’d been taking it for so long and Adam and I were about to get married, so I came off it.

Around six months after the wedding, I decided to see a doctor and get myself checked out because of the weight I’d gained and the fact that my periods had become so irregular too. That’s when I was diagnosed with PCOS.

At the time, we weren’t trying to get pregnant, but we weren’t being too careful either. For contraception, we were simply avoiding sex on the days I assumed I was ovulating. Once I was diagnosed with PCOS, it turned out that my actual cycle was so irregular, I’d been avoiding the wrong days. So, in theory, I should have got pregnant and we had, in a way, been trying for eight months with no success.

I started to use an ovulation kit, but it didn’t really work because I had such an erratic cycle. When I was monitored to see how often I was ovulating, there was no rhythm or reason to my cycle: sometimes I’d ovulate every two months, sometimes every four. Because I was ovulating so rarely, I realised we only really had around four chances a year to get pregnant. So when I was prescribed clomiphene (Clomid), a drug to make me ovulate, I was quite optimistic — you hear a lot of miracle stories about Clomid.

The first month I took it, scans showed I didn’t ovulate. So the next month, the consultant doubled my dose. You do hear bad things about Clomid too, how it can give you mood swings, but luckily I wasn’t affected. This time I did respond and, amazingly, I got pregnant.

A couple of weeks later, on my birthday, I suddenly felt very hormonal, and found myself crying for no reason. I tentatively put it down to being pregnant. Later that day, we went out for a family lunch. I felt some cramping then, during the meal, I started bleeding. When we’d finished eating, I told everyone we were going shopping but, in fact, Adam and I went to the hospital.

There, the nurse asked me to do a urine sample for a pregnancy test, then told me I was no longer pregnant. I came home and cried all night, devastated.

With my sister’s first baby due, my parents flew off to Hong Kong to visit her the next day, while I went back to my gynaecologist for a check-up. Just as I’d parked outside his surgery in Harley Street, my phone rang. It was my brother-in-law, calling from Hong Kong, to tell me I had a nephew. That hurt. I was genuinely happy for my sister and him but, at the same time, I felt sad and a real sense of loss for Adam and me.

The gynaecologist said that if I wanted, I could carry on with Clomid in my next cycle without a break. With hindsight, I can see I should have taken a couple of months to get over what had happened, both physically and emotionally. I felt sad for a long time. What did help was telling myself that there was a reason the pregnancy hadn’t continued, that the baby most likely wasn’t chromosomally right.

Ideally, you’re only supposed to take Clomid for six months, but I ended up on it for eight. I didn’t want to give up. I thought it was supposed to be a miracle drug, so I couldn’t understand why it wasn’t working for me. I was ovulating, but not getting pregnant. And I desperately wanted to know why. It was so frustrating.

I was referred to another private consultant, who took me off Clomid and put me on a drug called metformin. This helps to control blood-sugar levels, which can be high in PCOS, and can regulate your cycle so you start ovulating. She explained that it would take a couple of months to work, and if metformin alone didn’t make me ovulate, I could combine it with Clomid. If I didn’t get pregnant, she explained, the next step would be IUI.

As someone who’s extremely organised and used to being in control, those months of waiting for the metformin to work were hard for me. I kept thinking: friends are getting pregnant with their second babies and I’m struggling to fall pregnant with my first. And I was conscious that I’d be even older if and when I had a second child. The pregnancy I’d lost was still very much on my mind, and it was coming up to the due date. It felt like time was running away and there was nothing I could do about it. The one positive sign was that the metformin was helping me lose weight.

Two cycles of metformin and Clomid together didn’t get me pregnant, so we started IUI. That ramped up the stress levels. We were spending nearly £1000 a cycle and I was trying to fit in all the appointments with work, taking cabs to the clinic in lunch breaks because I was so busy.

The actual procedure itself wasn’t fun either. The sperm transfer had to be done with a full bladder, and waiting for my turn was very uncomfortable. I know being stressed probably didn’t stop the IUI from working, but it certainly didn’t make it very pleasurable. Every time IUI didn’t work, we booked in for another round. Looking back, I can see we should have stopped after two or three times but we were advised to keep going. It was like groundhog day: every month, I’d find myself back at the clinic. Finally, Adam and I decided our fifth IUI would be our last, and it was time for IVF.