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Polycystic ovaries stopped me ovulating

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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).

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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.

I was referred to Guy’s and St Thomas’. We had all the standard tests and we were surprised to hear that Adam’s sperm count had dropped, never previously a problem. The embryologists recommended that once I’d had my eggs collected, they should be fertilised with ICSI (intracytoplasmic sperm injection — where a single sperm is injected into each egg), explaining it would give us the best chance of fertilisation.

The staff, who were friendly and professional, put us at our ease, and made us both feel confident. The only thing that made me feel a bit sick was the thought of injecting myself with the ovary-stimulating drugs — I’m not good with needles or inflicting pain on myself. So Adam said he’d do them.

We had to do our first injection at a friend’s wedding — in a Portaloo, of all places. Holding the little bag of needles and drugs, we were trying to stay calm when someone knocked on the door. The injections are dispensed by a type of pen, and we’d been told to hold it down for five seconds. But because we were so paranoid, we counted out loud to 10, just to be sure. Goodness knows what the person waiting for the loo must have thought!

I dealt with IVF by going through the motions quite mechanically. Fortunately, the drugs didn’t affect my mood or emotions, so I was able to carry on with life as normally and unemotionally as possible. But, doing my last injection, I accidentally knocked the glass vial on to the ground and it smashed. So at 8 p.m., we had the panic of trying to get a replacement. Luckily, the clinic said they could fax a prescription to a pharmacy near us. But it took ages to find one that stocked the right drug, would accept a faxed prescription and was still open at what was by then 9.30 p.m. Looking back, it was farcical, but at the time, it felt like a disaster.

When it came to the day of egg collection, we were pleased to get 12 eggs. We felt as if we’d got over the first big hurdle. Three days later, we had nine good embryos and the choice of putting one or two back. We automatically said two, as we wanted our chances to be as good as possible. Once the embryos were in, I felt that there was nothing more I could do. It was in the lap of the gods.

A week after transfer, we took the Eurostar to a family wedding in Paris. When we arrived, I tried on my outfit — a black A-line skirt in a size 12 and a matching top — but I couldn’t do the zip up as my belly had expanded so much since I’d left London. I had to go shopping for new clothes and borrow a pair of my sister’s maternity tights (she was by then pregnant with her second child). I looked five months pregnant and a man in Galleries Lafayette actually gave me a chair because he thought I needed a break!

At the wedding, I felt uncomfortable because I thought people would assume I was pregnant too. I knew the bloating was probably caused by mild OHSS (ovarian hyperstimulation syndrome), which I’d been warned about by the clinic. The main advice is to drink a lot of water, so I was going to the loo all the time. I could hardly move, I didn’t dance, and I felt huge. Towards the end of the evening, my sides started hurting too and I began to feel really uncomfortable and knackered.

When we got back from Paris, I called the clinic, and told them about my bloating. They asked me to come in, in case they needed to put in a drain to take out the excess fluid that builds up with OHSS. The first thing the nurse asked was if I’d done my pregnancy test. I said no, because I thought I wasn’t due to take it for another two days. And she said, ‘No, you were supposed to take it yesterday!’ How the hell had I got my test date wrong? Probably because I’d been so determined to go on with normal life, and not think about IVF, that I’d pushed it to the back of my mind.

In shock and on autopilot, I went to the toilet and peed on the test stick. I didn’t even look at it. In my mind, I wanted to give the test to the nurse, go home and for her to call me with the result. As I passed the test to her, a faint line on it caught my eye. I said, ‘Oh, I guess that means the treatment didn’t work; there’s only a faint line.’ She said, ‘Actually, that means you are pregnant.’

I couldn’t believe it. I was elated, but made myself stay calm as I knew it was early days for the pregnancy. I went through the rest of the examination in a daze. Luckily, I didn’t need any treatment for the OHSS, and was just told to drink more water.

I called Adam, told him that the OHSS wasn’t serious and rambled on about my appointment before saying casually, ‘Oh, by the way, I’m pregnant’. He was ecstatic, of course. We decided not to tell anyone for a while, because of losing the previous pregnancy and the fact that this one was still so new.

Two weeks later, I started bleeding at work. It’s just not fair, I thought. It’s happening again. Adam called NHS Direct, who told us to go to A & E. After waiting for hours, we finally persuaded the doctor to do a scan. Incredibly, we saw one heartbeat, and that was a huge relief. There was another sac, but it looked like a dark circle with nothing in it. The doctor said, ‘There’s one heartbeat, but it looks as if the other embryo didn’t make it.’

That was the first time that the idea of twins had crossed either of our minds. I actually felt a loss for the second twin, thinking that it had grown inside me for a few weeks. But, as Adam said, we should be very grateful for our one healthy heartbeat. My mum, who has a medical background, said it was probably a good thing that we’d ended up with one, as twins can be such a difficult pregnancy, and often one or both of the babies is sickly or they’re premature. Everyone put a positive spin on the situation but, for me, it was still bittersweet.

Then, at our first official scan at the IVF clinic, at eight weeks, just as I was telling the doctor we’d only seen one heartbeat, she said, ‘Well, now you’ve got two’. I practically fell off the bed. She explained that the heartbeat comes between six and eight weeks of pregnancy, and the first scan was probably too early. We were shocked, but also delighted.

Even though I was only a couple of months pregnant, my stomach was very big, so I told people at work that I had something wrong with my digestion (I’d had digestive problems in the past). It wasn’t until after the 12-week scan, when we found out that both babies were healthy, that we finally felt confident enough to share our news. But, at 15 weeks, I suddenly started bleeding again. I kept thinking: I don’t want to lose one, they come as a pair, but, despite feeling well, I could only assume we’d lost one or both babies, as there was so much blood.

At A & E, after several examinations by different doctors, none of whom could find anything wrong with the pregnancy, it was discovered that I had a burst polyp — a little growth on my cervix — and that this was what had bled. The doctor was very kind and understanding and I’ll always remember him saying to me: ‘All babies are miracles, but IVF babies are real miracles.’

For the rest of the pregnancy, I had scans every two or three weeks, which made me feel safe. Nathan and Dylan were born healthy, by C-section, exactly a month early (they did go into special care for two weeks because they couldn’t yet feed). After they were born, all thoughts of Clomid, IUI and IVF disappeared. It’s no longer relevant to me how the boys were conceived. All that matters is that we have two healthy, lovely children.

Q: WERE YOU OFFERED ANY OTHER TREATMENTS FOR PCOS?

After we decided to stop having IUI, I did see a consultant who recommended a procedure called ovarian drilling, where a surgeon makes holes in your ovaries in order to restart your cycle. I did consider it, even went on the waiting list, but it seemed very extreme. I thought of it as a last resort, if IVF didn’t work.

Q: HOW ARE YOUR PCOS SYMPTOMS NOW?

The boys were born in January and I was thin within a couple of months, but by June of that year, I had put on loads of weight again. I could also see that I was a little more hairy too. Even though metformin had suited me so well, and the doctors were happy for me to go back on it, I didn’t want to take it. I didn’t like the idea of being on medication for ever. And I didn’t think, with the babies, I’d remember to take it three times a day, in any case. I kept thinking: maybe the symptoms will calm down or I’ll eat less. When the twins were three, I decided to go back on metformin. It has made a difference – I’m definitely less hungry and I’m down to a size 10/12 again.

Q: DID YOU TELL PEOPLE WHILE YOU WERE HAVING IVF?

I was quite happy to tell some people about our fertility treatment, but not everyone. I worked up until twenty-nine weeks; one of my fi nal tasks was organising a celebrity event. Everyone there kept saying to me, ‘Oh my God, you’re massive,’ assuming I was about to drop there and then. So I had to explain it was a twin pregnancy, and the inevitable next question was always, ‘Oh, have you got twins in the family?’ and, ‘Are they identical?’ When people ask if there are twins in the family, I think what they’re really saying is, ‘Was it IVF?’ But, to be honest, I’m not embarrassed by it. I usually say simply that it was fertility treatment – most people don’t ask for details.

I’m also asked, ‘What are you going to tell the children about how they were conceived?’ But I don’t think they’re going to care about the actual mechanism of conception, especially these days. I was making dinner the other day, stirring something, and Dylan said, ‘Is that how you made us?’ He knew that he and Nathan had been in my stomach, and assumed they must have got there the same way as food! If we’d used donor sperm or eggs, I think it would be different, as then it’s a question of genetics.

Q: WHAT WILL YOU DO WITH YOUR FROZEN EMBRYOS?

We’ve got seven embryos frozen from our treatment. Recently, I got a letter saying that they’re about to reach their fi ve-year deadline, and we have to decide what to do with them. We’re not going to use them ourselves, as we don’t want any more children. We’re still having a debate about what to do with them. If it was just my eggs, I could donate them to someone who needs them. But I’m not comfortable doing that with embryos, as they are, theoretically, full siblings to Nathan and Dylan. If I did, I might start thinking every child I see on the street is genetically ours. I would like to give them to medical research, as for me it’s important to give back, but Adam isn’t keen as he doesn’t want them to be prodded and experimented on. He’d rather let them be destroyed. I think I’ll probably win the argument in the end, but it might take a while.

Q: WHAT’S YOUR BEST ADVICE FOR ANYONE DOING IVF?

You need to keep calm. I’m sure that part of the reason why IVF worked for us is that we’re quite calm people. And I made sure I stayed that way. My belief is, only worry about things when you absolutely need to.

Also, try to be positive and don’t think about it not working. Try to go about your normal daily life and don’t let everything be about IVF. Just before I had IVF, I met a woman who’d had multiple cycles of IVF and had made some extreme life changes she thought would help it work. She was on a strict organic diet, not using foil or plastic on her food and avoiding microwaved food. But I knew that wouldn’t have suited me. I believed that the more changes I made away from my normal life, the more I would have been setting myself up for disappointment had IVF failed.

The hard thing, when you’re having fertility problems, is when your friends are falling pregnant around you – especially, I found, when they are having their second. But you have to be positive and think: their second won’t take away my first.

Q: WHO WAS YOUR SUPPORT SYSTEM?

I had my best friends, my parents and, of course, my husband Adam, although, ironically, I probably spoke to him about it less, as I didn’t want it to be all-consuming for us. After a while, Adam’s attitude was sometimes, ‘Do we really need to talk about this again?’ He always believed it would happen for us. And, as a man, he wasn’t as conscious of my biological clock, so he didn’t mind if it happened straight away or in a year.

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Difficult though it is to live with the symptoms of PCOS, the good news is that the majority of women who have it and want to get pregnant, do so. But that doesn’t mean it isn’t a hard slog to get to that point.

For excess weight associated with PCOS, some women swear by the GI diet: ‘Many nutritionists, dietitians, and women with PCOS believe the lower sugar and lower refined carbohydrates in the GI diet really work, by reducing insulin resistance and keeping hunger pangs at bay,’ explains Colette Harris, co-author of PCOS and Your Fertility (Hay House) and The Ultimate PCOS Handbook (Thorsons). ‘The basis of the diet is more protein, more fibre and less sugar,’ she says. And while there’s no consensus on how often or how hard you should exercise, she recommends some exercise every day, even if it’s just gardening or brisk walking.

If you are keen to explore complementary treatment for PCOS, a Swedish study from 2010,¹ where women had 16 weeks of electroacupuncture (where the needles are linked up to a minimal electric current) had more periods as a result. Fertility acupuncturist Emma Cannon (emmacannon. co.uk) says that most of her clients find their cycles return after one to two months of acupuncture.

And there’s more good news: a study published in 2010 from the Shahid Beheshti University in Iran² compared the AMH blood levels (anti-Müllerian hormone — a marker of fertility) of women with PCOS and those without, and found that AMH declined to menopausal levels on average two years later in women with PCOS, which means they have a better chance of conceiving at a slightly older age³.

Finally, Verity, the PCOS charity, runs conferences with expert speakers (verity-pcos.org.uk); you do need to be a member, but they can keep you up to speed on all the latest research. You can download previous conference speeches at the website of PCOS-UK, the education arm of Verity (pcos-uk.org.uk).