This is a positive story, which I’m writing because when I was in my roughest patch, it helped so much to read these kind of things. It also contains a few useful/practical tips (scroll to the end for these) which I learnt along the way and I hope will be of use to others.
I have always had irregular periods, and didn’t think much of it as my mum had too, and she got pregnant so fast. Frankly I liked that I only had to think about my periods half as often as my friends! I also had a scan of my ovaries at the age of 21 in case they were polycystic when I was living in India for a while, and they came back “perfect”, so I thought nothing of it.
I had been with my partner for 7 years and we were recently married and wanted to have a family. A few months before we thought we’d start trying, I started to track my ovulation using one of the temperature taking apps as I thought it would be important to establish when I ovulated. Weeks passed, then months, and I couldn’t capture an ovulation, and I hadn’t had my period either. I got my coil taken out, and it was ongoing. I got into a sort of pattern of ovulating every 3-4 months, and I usually missed that window because, let’s be honest, who’s having sex every other day?!
It was desperately disheartening. I talked to my cousin who is a doctor, and she gently urged me to get a scan of my ovaries done. If I did have polycystic ovaries, she said, I might be able to take a medication to bring ovulation on. I used some private medical insurance with my work, but the bloods, scans etc were so wildly expensive I went way beyond the £1600 limit. Nonetheless, it was useful when they came back with a diagnosis of PCOS. We discussed the drug options with the gynaecologist, but this was very expensive too, as once you take the drugs (clomid or letrozole) you then need one or more ultrasounds to see how your ovaries are responding. Each of these ultrasounds were £360. Plus consultations fees. Looking at the stats, the positive outcomes for the drugs looks quite low. We decided to wait it out a bit to see if we could catch an ovulation.
I started taking metformin (prescribed privately) and inositol supplements to balance my insulin (the cause of PCOS, but I won’t go into detail on that there) and thereby bring my ovulations closer together. We didn’t notice much difference…
This was a very, very low time. So many friends were getting pregnant or had children. I felt so lonely, and like my body wasn’t working properly – like I was somehow failing as a woman. I would be gripped with fear and sadness that we’d never get pregnant. I’m an outgoing, adventurous, ambitious person, with my dream job, friends I love, a wonderful man, and a really blessed life. But I have always adored children and, probably since the age of about 12, imagined holding a child in my arms. I would be described by people as the person they most imagined as a loving mum. It felt intolerably cruel that it might not happen for me, when, if I’m honest, I have never wanted anything more than being a mum.
Eventually we decided to try to the ovulation drugs. We got a private prescription from the same hospital I’d had the tests at, and accepted that if we needed an ultrasound twice, then so be it. We took £1k out of our savings, booked in the scans, and I was about to start the medication you take to bring on a fake period before starting letrozole when, out of the blue, we got pregnant! I wasn’t expecting to ovulate and had no record of it on my temp chart. I was about to start a week of work travel when I noticed the stretchy clear “egg white cervical mucus” you learn to look out for. We had sex before i went on the work trip, and 5 days later my temp shot up. I figured the window was too long between sex and ovulation, but to my surprise two weeks later there was a positive line on a pregnancy test. I can’t describe the shock. I felt like a was in an alternate universe. Or dreaming. After a few days I started to finally let myself feel joy and relief.
But a day after than I started to get strange electrical pulse type feelings down the front of my legs, and period-like cramps. I left work early and got a GP emergency appt. I turned up in tears, but the doctor told me off for getting myself in a state and said that if there was no blood, there was no need to worry. I was shaken, but curled up on a sofa for the evening with my husband determined to calm down. Around 9pm that night I went to the loo and found blood. I completely fell apart with grief. I knew, deep down, it was a miscarriage.
We went back to my GP the next morning and got referred to the early pregnancy unit for a scan. We had to wait three hellish days. During which I obsessively monitored my on-again off-again bleeding. At the EPU, a urine test confirmed I was pregnant. My husband told me later that it broke his heart to see my eyes light up with hope. We had a blood test which confirmed it too. When I had the internal scan, there was so much blood. They couldn’t find a pregnancy. They said it might be too early, and I would need to come back in a few days. But when they gave us the HSG level in my blood, we looked at online charts and knew it was too low to be 21 days pregnant (which I knew I was, from when we had conceived). We started to process the miscarriage and took up the appts at the EPU to make sure that my blood levels of HSG were declining normally.
To our shock, the continued to gradually climb. They told us it may be ectopic. I didn’t believe it could be. I wasn’t in enough pain. But the Sunday after I had first found out I was pregnant, the cramps were so intense it felt like what I would perceive as labour. I figured this was a miscarriage “happening”. We went back for another scan on Monday and they found the pregnancy in my fallopian tube. The devastation was horrific. Might I lose that tube?” I asked. “yes”, said the consultant, “you might”. It was terrifying, given the issues we were already having.
We had options: wait and see (expectant management), and let the pregnancy naturally die; take an injection to abort, after which we would have to wait 3 months to get pregnant, as it is toxic; or have an operation to remove the tube. We were advised to wait and see. Agonising, but probably best in the long run.
We entered a kind of slowed down reality. Every morning for three weeks was a challenge. I had to pull all my courage together to get up and face the day. At first my HSG levels continued to climb. When this happened I held my little pregnancy under my hand (my hand on my belly), and asked it gently to let go now. You’ve fought so bravely little one, I said, and I’m so grateful, but you can let go now. We called it the braveling. We lay in bed and lit a candle for our braveling to help guide it’s way onwards, and clung to each other, and cried.
It was the most awful of times. But it was also so beautiful. We felt, in our marriage, so much love for each other, and for the tiny life we had made with each other. We felt so aware of life – how precious and fragile it is. We felt heart-broken, scared, exhausted. But we also felt lucky to be capable of so much love. And we felt in touch with life.
My HSG started to go down. The relief was indescribable. Three weeks later I was back to an HSG of 5: pre-pregnancy levels. It was time to move on now. I felt, in the strangest way, lighter that I had before. I felt my panic at not getting pregnant had been replaced with a kind of soulfulness and acceptance.
What was tough was being told that we would have to wait a full cycle (i.e. I would need to have an additional period) before trying to conceive again, and knowing me this could take 6 more months. We were on the NHS fertility waiting list but we couldn’t see a consultant until I’d had my tubes scanned. They didn’t want to scan my tubes until I’d had a period. All the waiting was awful. I called the NHS fertility clinic and to be quite blunt they were horrible: “I won’t discuss this with you until you’re physically and emotionally ready” said the nurse on the phone. Agony.
We decided again to go private and to use the money we’d set aside before we had unexpectedly got pregnant. We found a kind of package with a Dr on Harley street, for the tube tests, ovulation medicine, scans etc. We saw a wonderful doctor, and made a timeline. It helped to have that perspective. It helped to ask him every question under the sun (could the ectopic be linked to PCOS for example? Maybe, he said, as your hormones are out of whack and that might impact on the way your tubes move your eggs around).
We were going on holiday soon and he encouraged us to “go for it” and not hold off getting pregnant if we wanted to at least try. People often get pregnant on holiday he said.
I think you can see where this is going. On the third day of our holiday, there was the egg white cervical mucus, and two weeks later, there was the positive line on the pregnancy test. Unreal really.
Being pregnant was, understandably, terrifying. It was very painful on one side at first, and I was sure it was ectopic. We self referred to the EPU. Two appts later confirmed everything was normal. A week later, and I had stabbing pains in my stomach. I “knew” it was a miscarriage. It wasn’t. At 16 weeks I had a little brown bleeding. I also "knew" that was a miscarriage! It wasn’t either… everything was fine, normal. This was my baby. This is my baby.
She just turned one. She is perfect. I wrote most of the above when I was pregnant and coming back to it now, a distant memory, I am reflecting on how hard and gruelling it was. And yet now I have a healthy girl in my arms. It all worked out fine.
Not knowing if you can get pregnant is harder than people can really imagine. Friends who do have children try so hard to be kind, but their lives are at a different stage, and you want to just be happy for them, and not just talk about your fertility.
Friends who are single but would like to be married and trying can feel that “at least” you have found a good man.
People can find you dramatic, overreacting, obsessed, distant, overly-positive, overly-descriptive. No one really says the right thing. It’s impossible. I felt like a complete failure to my husband, despite endless reassurance from him. It can all be achingly lonely.
You’re not alone. So many of your sisters go through this, and come out the other side. It IS hard – harder than anyone realises. And it IS, usually, going to end up absolutely fine.
So there you have it. I hope you, reader, if you have stumbled across this during a painful moment, canfeel my compassion, but also feel profound hope for yourself. I am holding your hand firmly, all the way.
Finally, below are some practical tips I learned along the way, which I hope are useful.
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On a very practical note, if you want to get infertility tests done, if you’re in year 1 or 2 of trying, the NHS will most likely be quite unhelpful. Going to a private hospital can result in huge bills you’re not expecting. If you’re lucky and able, I recommend finding a fertility clinic and doing an “MOT” type thing. These usually cost around £450. Not cheap but not as awful as the £2k or so I think I spent (about half of which was refunded my insurance). You then have a diagnosis you can take to your GP, or you can accept private treatment. Base it on your stress levels. Given how stressed I was, we decided to forgo holidays and nice things, and invest in this. It was the right choice for us.
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If you can, limit, or don’t even use at all, temperature taking, or fertility kits. I found it useful to establish that I wasn’t ovulating frequently, and it helped me push for a diagnosis. But once I’d done this, the temperature taking and constant testing added to the stress and quite possibly my lack of ovulation. I’m pretty sure of this. A gynaecologist told me this too and it was just too hard for me to act on because I wanted to know what was happening in my body. What we eventually did do after our lost pregnancy, was stop with all of those things, and only used them to check if I had ovulated, after I expected it had happened, and in order to confirm it. The primary thing I did was look out for egg white cervical mucus. Both of times I got pregnant, this was the sign that prompted us to make love! And both times it worked.
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Look into metformin, and definitely start taking inositol. It can take 6 months to kick in though. These help with your insulin levels, which is the root cause of PCOS.
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The health advice is hard to accept but I think it does work. In a nutshell: try for a low GI diet, and exercise quite a lot. I have a friend with PCOS who’s periods became completely regular before her wedding, as she was exercising so much. I also had the same before my wedding (roughly having a period every 6 weeks), and after we got married, due to stress of fertility and a lower level of exercise, they started to be every three months. I do think there’s a correlation.
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Finally, above all, see if you can take the stress and pressure off yourself and remember this fact: if you are reading this, the likelihood is that you will be able to have your baby. I had read that women with PCOS don’t have fewer babies, but they do take longer to have / are more spread out. It also helped me a lot, after we lost our first pregnancy, to reset, and accept that this may take us some years. I started to let go of the urgency and comparison with my friends who had seemingly got pregnant my sneezing, and accepted that our story would look different and take longer. 6 weeks later, I was pregnant with my little baby. I was very lucky. I am NOT saying "you need to relax". People who say that are the WORST. I suppose I'm just saying, reset your expectations, if you're able. And be as kind to yourself as you can.
Holding your hand,
G