Читать книгу IVF: An Emotional Companion - Brigid Moss - Страница 8

I had premature ovarian failure

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What happens when you start trying for a baby, then find out that you are having an early menopause and that your hope of any fertility treatment working has just plummeted?

The accepted statistic is that one in 100 women has her menopause by the age of 40 (usually called premature ovarian failure, or POF). However, a new study from Imperial College, London, puts the number much higher, closer to one in 14, including those who have had surgery or treatment for cancer.⁵ POF can be devastating, even for women who’ve finished their families. A friend I interviewed, who had her menopause at 37, said, ‘Not only was I having hot flushes, feeling angry and putting on weight, but I was doing it ten or fifteen years before my friends, so there was no one to talk to about it. It didn’t seem fair.’

Although, when you think of the menopause, you probably think of the typical symptoms my friend described, what it actually means for a woman is that she has gone through her store of eggs. ‘At birth, your lifetime supply of eggs — your ovarian reserve — is already determined,’ says Professor Bill Ledger, Professor of Obstetrics and Gynaecology at the University of Sheffield. You release one egg every 90 seconds — one of which matures each month — and when your store is gone, it’s gone. ‘Ovarian reserve can be reduced by ovarian cysts, surgery on an ovary, chemotherapy and radiotherapy. You also speed up the rate it reduces by drinking too much and smoking,’ says Professor Ledger. But, for half of all women who have POF, no reason is usually found. ‘My guess is that women who have an early menopause probably have a smaller lifetime supply of eggs to start with,’ he says.

An early menopause often runs in families — so if it’s happened to your mother and grandmother, it’s more likely to happen to you too. Early menopause wasn’t such an issue for our grannies, of course, who tended to have their children younger, but the average age of new motherhood in the UK is now almost 30. ‘Mum had her babies in her 20s,’ says Toni, whose story is below, ‘so even if she had had an early meno-pause, it wouldn’t have made any difference to the number of babies she could have. I thought I had at least another five years until I needed to worry.’

If you are showing signs of being peri-menopausal (you aren’t actually classified as menopausal until you haven’t had a period for a year), the first test your GP will usually do is for FSH (follicle-stimulating hormone), a hormone produced by the pituitary gland at the base of your brain. As the supply of eggs dwindles, this goes up. A result of 10 and under is usually considered fertile. ‘But it’s a very imprecise tool for looking at ovarian reserve,’ says Professor Ledger. ‘By the time FSH has reached over twelve, in many cases ovarian reserve has gone down very substantially.’

Two more accurate ways of measuring ovarian reserve are the antral follicle scan, which counts the number of potential follicles in your ovaries each month, and a blood test for AMH (anti-Müllerian hormone), a hormone that’s directly released by the follicles in the ovary. Even if your AMH is low, it doesn’t mean IVF won’t work. ‘But it is a warning sign you may not have a good response,’ says Professor Ledger.

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Toni, a sales manager from Manchester, had just married David when she was told, aged 31, that she was close to the end of her fertility.

Two weeks after David and I got back from honeymoon, I called my mum, to say that my period was two days late. David and I had agreed to try for babies at some point in the next few years, but I was surprised it had happened without us trying. ‘Well, I’d rather be pregnant now than find out in two years that we can’t have children,’ I said, and we laughed. But my period came a couple of days later.

Before the wedding, my periods had been very regular and I’d never even had PMT. Then, I started to feel really down, which isn’t at all like me. And I was having hot flushes, too. When I mentioned it to friends, they said I was probably having post-wedding blues, a comedown after the big event.

I went to see my GP, and mentioned, jokingly, that it might be the menopause. I was only 31, after all. He did some blood tests and rang me the next week while I was driving to work. I put him on speakerphone and heard him say, bluntly, ‘Actually, it is the menopause.’ He told me that my FSH was 68, when it should be 10 or below. Then he said, ‘In fact, that level is post-menopausal.’

It was such a huge shock. I remember it was pouring with rain, the windscreen wipers were going, and I couldn’t seem to see to process the news. At home, David comforted me, and promised me everything would be fine. But I couldn’t even look at myself in the mirror because I’d think: that’s a menopausal woman. How can I look so normal, when I’m not?

My GP referred me to hospital for more blood tests and scans. The results confirmed what he’d told me: menopause. The fertility specialist told me there was nothing they could do. She said we could try IVF, but we probably wouldn’t succeed as my problem was going to be getting eggs. And there was no way I had two years of fertility left to wait on the NHS list. She suggested the Lister Fertility Clinic in London, as they specialise in IVF for women with menopausal hormone levels. ‘But if you want to get pregnant really your only option is egg donation,’ she said, ‘so I suggest you have counselling for that.’

That was too hard to accept, that our only way to have a baby would be with someone else’s eggs. I knew David was upset, scared that we’d never have children too. But he didn’t show it; he just tried to be strong for me, because I was so completely devastated. The fact my body didn’t work was all I could think about. I felt half a person and guilty — as if I’d let David down, and I wasn’t the woman he married.

I fantasised about running away from everyone, emigrating to the other side of the world, alone. But the sensible me thought, I want David to have a child, and I want my parents to be grandparents. I had told Mum and some of my closest friends my diagnosis, and they were brilliantly supportive. Between them and David, I managed to keep going.

It was taking months to get appointments on the NHS so I went to see a private gynaecologist, who did more blood tests. For a change, a nice surprise: my FSH had gone down to 10. So I wasn’t totally menopausal. In fact, over the next year, my FSH fluctuated between 2 and 60. It wasn’t all good news, as my oestrogen was high when my FSH was low, another menopausal sign. But, the gynaecologist said, the official definition of the menopause is a year without a period, and I was still having some periods, which meant I was still ovulating, if only sometimes. So, in fact, I had what’s called premature ovarian failure (POF), and there was hope. ‘It just means it’s going to be very, very difficult for you to get pregnant and to keep the baby,’ the gynaecologist said.

My next test was a scan of my ovaries, called an antral follicle count, where they look at the number of possible follicles developing that month; it’s an indicator of your ovarian reserve, how many eggs you have left. My right ovary was inactive and very small. (When I was 16, I had a cyst removed from it, and I don’t think it had worked since, even though doctors told me it shouldn’t have made a difference.) But, amazingly, the scan showed I was about to ovulate from my left ovary.

We were delighted, and set about making a baby that night. Two weeks later, I did a test and I was pregnant. It was absolutely brilliant, a huge relief. I thought to myself: what are they all talking about? Menopause? What nonsense. Not only was I pregnant, but the pregnancy hormones overtook the menopausal ones so, for the first time in ages, I actually felt normal.

At seven weeks, I had a private scan, and saw the heartbeat. But at 10 weeks, I went for a scan at the NHS fertility clinic and, after looking for a minute or so, the woman scanning me said, quite casually, ‘There’s no baby’. I said, ‘Oh yes there is, I know I’m pregnant, I’ve seen the heartbeat.’ ‘No,’ she said, ‘there’s no baby.’

David wasn’t with me; I’d thought this was just a routine NHS appointment. It hurt so much, I wanted to scream, ‘Do you realise what this means? You’re telling me my only chance of getting pregnant has ended in a miscarriage.’ I put on my knickers and tights, went to the toilet, and threw up everything I’d eaten that morning.

It turned out the baby had died around seven weeks, shortly after the first scan. I was given the choice of pills or an operation to remove what was left. I went home, took the pills and waited. The bleeding was really heavy for a week, then stopped, then started again. I went to see my GP about the bleeding, and again a few weeks later, but I was told it was normal.

For two months, I bled really heavily, huge clots, every day. Eventually, because I’d become so anaemic, I passed out at my sister’s house the day before Christmas Eve, and had to be rushed to A & E. It turned out a bit of the pregnancy tissue had been left behind, and it was signalling to my body that I was still pregnant. I had a D & C (dilatation and curettage — where my womb lining was scraped out, including the left-behind pregnancy tissue) under general anaesthetic.

It felt as if I’d used up my last egg and our one chance to have a baby. Every period after that was a mixed blessing: I’d think it might be my last one, but at least it meant I had ovulated again.

I booked in for an IVF consultation at the Lister. I saw Mr Hossam Abdalla, the medical director, who was realistic, but not as fatalistic as previous doctors I’d seen. He put my odds of getting pregnant at 5 per cent, with a high chance of a miscarriage. A lot of clinics won’t even take on patients with POF. (The problem is that the drugs they give you during IVF to boost your egg production are, in fact, the same hormone — FSH — that your body is overproducing because of the menopause.) Mr Abdalla said that giving me extra FSH might not make me ovulate, but it would be my best chance of getting pregnant, and at least I’d be closely monitored.

So we embarked on IVF with the highest amount of drugs possible. I wasn’t hopeful. I knew the odds were against me, but I was really determined. I kept thinking of older women who get pregnant, like Cherie Blair. My mantra was: ‘As long as there’s one egg, I can get pregnant.’

I enjoyed the whole process of IVF. I’m not a control freak, but I liked the fact that, for the first time in ages, I knew exactly what was going on. By now, my menopausal side effects — feeling exhausted, hot flushes, brain fog, being so angry I wanted to chuck things out of the window — had got so bad that I actually felt better taking the IVF drugs.

Scans showed I had three follicles growing on my left side (and I only needed one, I kept telling myself). But when it came to egg collection, only one egg was mature enough and it was damaged. So that was the end of that.

We licked our wounds, and decided to carry on. I was absolutely not going to give up. For as long as I was ovulating, we were going to try.

By then, I’d read everything I could find on fertility, gone completely teetotal, given up caffeine and switched to organic food. I’d started to have weekly reflexology and acupuncture too. I felt panicky though, as no matter what I did, my periods — and so ovulation — were beginning to get less regular. Sometimes two months would go past without any sign of one.

I carried on at the Lister, doing cycle monitoring, so we’d know the best time to have sex. But treatment wasn’t cheap; we’d already spent around £7000 on IVF, £100 a week on reflexology and acupuncture, £100 a scan and more for blood tests too, and I knew we couldn’t carry on spending this kind of money indefinitely.

At the time, it seemed as if all my friends were getting pregnant around me, as if I was surrounded by bumps and prams. And I had this feeling of guilt that was weighing me down all the time. I was putting on weight and every time I had a hot flush, a fit of anger or woke up at 5 a.m., it was a reminder that I was menopausal and couldn’t get pregnant. My only consolation was the thought that if I didn’t get pregnant, we could try egg donation or adoption. I wasn’t ready to stop trying for my own biological child just yet, but not having children at all wasn’t an option.

That September, six months later, we started a new cycle of IVF. I did the injections for the usual two weeks but there was no sign of a single egg this time. Another full week of injections later, there was finally one egg there. I was fully expecting that we’d have to abandon the cycle completely. And, as I’d expected, the doctor advised us that the risk of damaging our only egg by taking it out was too high. But he had an idea: he suggested that we do IUI, where David’s sperm would be put inside my uterus at exactly the right moment. Great, I thought. At least we have one option. So I did the injection to make me ovulate, started on progesterone suppositories, and we had the IUI procedure two days later.

I put the fact that I had begun to feel different down to the progesterone. But two weeks later, on New Year’s Eve, I decided to do a pregnancy test (it was a couple of days early, but I wanted to know if I could drink, after being teetotal all year), and it was positive. It was a brilliant New Year!

Still, in the back of my mind, I knew the pregnancy wasn’t safe. David used to phone me from work every day and ask me how I was feeling, going through a checklist: still feeling sick? Yes. Still got sore boobs? Yes. After my 12-week scan showed a healthy baby, I did start to relax, though not completely. I loved being pregnant, the novelty of it and feeling special. I didn’t take one second of it for granted. I hope I never complained about it. But just the slightest thing — bleeding and, later on, not feeling the baby move — sent me straight to the hospital for checks. It all went well though and, in September, Charlie was finally born: our dream come to life, a gorgeous little lad.

My periods became pretty regular after I stopped breast-feeding Charlie at six months, so I felt positive about getting pregnant again, and we started cycle monitoring again. We do know how lucky we are to have Charlie, and I don’t want to sound ungrateful, but we both would have loved a brother or sister for him. If the pre-baby me had heard me saying that, I’m sure she would have told me to shut up and just appreciate what I have! But there is a sense we haven’t finished our family, and I hate the thought of both of us being a burden to Charlie when we’re older.

When Charlie was 14 months, I did get pregnant, but it ended in a miscarriage at 10 weeks. Now, he’s four and starting school. I thought I’d get pregnant again naturally, but we haven’t managed it. Things have really slowed down for me hormonally, and I have gone four months without a period. Six months ago, we tried injecting fertility drugs again to see if I could get an egg, but it didn’t work.

David struggled for a couple of weeks after that, coming to terms with the fact we won’t have any more children who are fully related to us and Charlie. Now, egg donation really is our only option. I’m on the list at a clinic in the UK, but I’ve got mixed feelings. I am most of the way to accepting that Charlie will be an only child, and to seeing the good side of that. It’s not what we would have chosen, but it’s definitely enough.

Q: WHAT HELPED YOU COME TO TERMS WITH YOUR DIAGNOSIS?

I didn’t accept or come to terms with the diagnosis of an early menopause until very recently. Instead, I fi xated on getting pregnant. One doctor told me that your ovaries can sometimes stop working temporarily, and then restart again. So that is what I chose to think. My desire to get pregnant was stronger than the horror of facing an early menopause, so I let that be my overriding emotion. I found out that Premature Ovarian Failure happens to one in a hundred women, and it was enough to know that I wasn’t alone, without having to speak to anyone who was going through the same thing. I did look at support group websites for women with Premature Ovarian Failure, such as the Daisy Network, but only to see if there were any success stories. When I couldn’t fi nd any, I stopped.

Q: WHAT IS YOUR ADVICE TO ANYONE WITH PREMATURE OVARIAN FAILURE?

Get the symptoms treated. A month ago, I got a private referral to a doctor who specialises in POF. I had avoided doing anything about my menopausal symptoms as I hadn’t wanted to interfere with getting pregnant. But I thought, enough is enough – it’s time for HRT. My doctor prescribed me bioidentical HRT – body-identical forms of oestrogen and progesterone. He told me that, if it made any difference at all, HRT might have increased my chances of getting pregnant. In fi ve years, no one had mentioned that. And, two months into taking the hormones, I feel a lot more human.

Q: WHAT’S YOUR VIEW ON EGG DONATION?

I’d say, don’t rush into it. It’s a big step and one that needs to be thought about carefully. And you’ve got time because it’s the donor’s fertility that matters, not yours.

I would definitely tell any child conceived by egg donation that he or she was a donor baby. But, after having Charlie, I can’t make up my mind if it would be fair to have a child who wasn’t fully related to him. Would he look like Charlie? I’m dark, but Charlie is blond and blue-eyed like David, so my own biological child looks nothing like me! I’ve no doubt I’d love the child, but how would that compare to my love for Charlie? Then I think, well, David’s family are all utterly gorgeous, and the child would be fully related to them. I’d be carrying the baby for nine months then, when the baby was born, nursing him or her. I’d probably be too busy to worry about whose eggs helped make the baby.

We have been offered three possible donors so far, who are egg-sharers, which means they’re willing to give away half their eggs in return for most of the cost of their IVF treatment being paid for by the recipient of the eggs. But we’ve rejected all of them. The first two were blonde, and that was what put me off. Then I changed my criteria to dark-haired women only, and the perfect person came up: educated, brunette, in her early 30s. But David and I talked it over, and decided to say no. It feels quite fi nal, but we haven’t said never.

Q: WHAT WAS THE MOST USEFUL ADVICE YOU WERE GIVEN?

To be honest, all the doctors were quite negative, though I suppose they were only being realistic. My friends and family helped by telling me that I’d got pregnant once, and so I could do it again. Going to see a refl exologist was a great support, too. She used to remind me that I was still ovulating sometimes, that I wasn’t fully menopausal.

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If you still have periods, some clinics will perform IVF with your own eggs, even if you have high FSH and/or low AMH. Your chance of success, of course, is low, but there is a chance as long as you’re ovulating. The Lister Fertility Clinic in London (ivf.org.uk), for example, specialises in this category of women, and recommends that you start treatment as soon as you can after diagnosis. Create Health (also in London) treats women with reduced ovarian reserve. The medical director, Dr Geeta Nargund, believes that a lower-dose drug regime is often more successful in such women (see createhealth.org and Chapter 9).

The main UK charity for premature ovarian failure is the Daisy Network. They hold an annual conference with speeches by experts in premature menopause. Their website (www.daisynetwork.org.uk) has information on IVF using donated eggs, as well as adoption, surrogacy and being ‘positively childless’. Another good source of information on donated eggs is the Donor Conception Network (donor-conception-network.org). See pages 172—3 for more information on egg donation. And make sure you tell your doctor that you’re considering egg donation, as it may affect your treatment for menopausal symptoms.

The International Premature Ovarian Failure Association (ipofa.org) has a useful factsheet too. And you may want to see a counsellor or consider therapy. To find a counsellor or therapist, go to bica.net, bacp.co.uk, psychotherapy.org.uk and bps.org.uk.