Struggling with recurrent miscarriage

Story by Lauren, 

For the last year and a half my life has been an endless obsessive cycle of blood tests, pregnancy tests, tracking my temperature, ovulation tests, excruciating scans, wasted hours waiting in hospitals. In this time, in total I’ve been pregnant for 203 days, each day being paralysed by crippling anxiety. Meaningless plans and pointless hope of which I have nothing to show for.

Three pregnancies lost, I am the 1 in 100 that is suffering from recurrent pregnancy loss.

Being pregnant after you’ve experienced a loss is far from an enjoyable process. That initial elation is stolen from you and something I will never regain. The lingering sadness and heartache that comes with losing a baby, however early this might be, will always stay with me. I am waiting impatiently for those feelings to disappear whilst taking each day as it comes.

I am normally a private person, however, as there is still such an apparent stigma associated with early miscarriage and infertility, I feel it is important to share my story in the hope that it might help others struggling with infertility.

I first fell pregnant in January 2018 two months after getting married. My husband and I were very fortunate that we conceived very quickly without too much thought. I experienced short stabbing pain in my lower stomach one evening and the GP sent me to my local EPU. I had taken a negative pregnancy test early that week which had then turned into a faint positive.

The EPU couldn’t see any sign of an embryonic sac so they sent me home and advised me to come back a week later. At 5 weeks pregnant we had a successful scan where they could see the pregnancy sac in the correct place and they had no cause for concern. We were off on our honeymoon the next week, both feeling slightly anxious but secretly smiling inside at what might be. We came back after our honeymoon and before we shared our news to our parents we decided we would go for another scan to check everything was fine. I had no symptoms of pain or bleeding, nothing to indicate anything had gone wrong. At this point we were nearly 10 weeks pregnant.

The screen showed just a black dark sac; a blighted ovum. The next days were just a dark haze. I had to be booked in for a surgical managed miscarriage under general anaesthetic. We shared our sad news with our closest friends and family. I felt very alone and a different person already. Just four months after our beautiful wedding I was lying in a hospital bed hollow and damaged.

We both seemed to recover and regain hope fairly quickly; everyone told me how common miscarriage is and at least we were falling pregnant. Our imagined future was not progressing as we had expected, however we were still young and the doctors said they had no reason to believe why we should not go on to have a successful pregnancy.

In June I fell pregnant again. I felt sick, exhausted and swollen and my symptoms seemed much stronger than our previous pregnancy. At seven weeks, I woke up very early with lower abdominal cramping followed by bleeding. It was such a shock; I knew straight away it wasn’t right. I sat on the floor outside the EPU door waiting for the clinic to open whilst the bleeding and pain only increased. We were told my hormone levels had dropped and this time we had miscarried naturally.  

At this point I started to think there was an issue. We paid privately to see a Gynaecologist and an Endocrinologist as the NHS only start investigations after three recurrent miscarriages. I became all consumed with googling symptoms, causes, statistics, desperately trying to find answers on why this might be happening to us. I was told I had insulin resistance, PCOS, underactive thyroid, high cholesterol.

I was told I needed ovarian drilling, progesterone, oestrogen gels, potentially Clomiphene and heparin shots. I had contradicting information from each doctor we saw. I had family and friends sending me articles, telling me stories of people they knew that had a miscarriage that tried this and did that. Everyone was second guessing what was wrong with me.

I endured many painful conversations, people did not know what to say. I went to weddings and parties, people asked me when we were planning on starting a family, did I have children? I had a manager at work, pulling me into his office asking when I was planning on having a baby and how serious I was about my career. Those who asked me meant well, but had no understanding of the private pain their seemingly innocent questions caused.

Just as we felt strong enough to start trying again, my husband had a needle stick injury at work and had to undergo HIV treatment as a preventative. We were told we could not try to conceive for 3 months.

I was devastated, so worried about his health. I was becoming desperate to be pregnant again as I felt this was the only way to make all this pain disappear. However, the three month break from trying was important for us emotionally and for my poor body to have a physical break. I wasn’t sure how I would bare the monthly emotional roller coaster of trying to conceive; each time wishing the time would fast forward, instead of enjoying what we had together and our wonderful marriage.

The New Year came, I had just turned thirty and I felt ready and positive this year would be better. I would just write off 2018 as being unlucky. We conceived again in January, this time I had very strong positive pregnancy tests. We had two early scans at week five and week six showing a little flickering heartbeat and a developing fetus. We had never got this far in the development of the pregnancy and both convinced ourselves this time we were going to be ok. The miscarriage rate drops significantly when you see a strong heartbeat so I felt confident this time was going to be fine.

My drug cocktail included thyroxine, progesterone, vitamin D, metformin, aspirin, Pregnacare max and fish oil capsules; all mostly as precaution. I counted out my medication methodically every morning. My pregnancy symptoms seemed strong. I tracked my pregnancy app reading incessantly about the developing foetus. I felt like I was imprisoned in this strict routine, too terrified to do anything but work and rest. I avoided all social situations possible, paranoid about everything little insignificant thing; from the bath temperature, lifting anything too heavy, questioning my symptoms every minute of the day. My husband would wake in the night calling out my name, worried that I had started bleeding again. We both felt trapped and isolated.

We had another scan at ten weeks. We could see the little baby waving, and wriggling around, two arms, two legs, little nose and a strong heartbeat. The sonographer said everything looked healthy and the right shape and size. It finally felt real. I had my printed photographs and couldn’t quite believe it, we spoke about names, guessing the gender and our future plans.

I watched the little video clip on my phone every spare moment I had. At twelve weeks we had to push our dating scan back as my husband was away. Again I felt no physical signs or symptoms that might indicate something had gone wrong. I couldn’t believe we had reached twelve weeks. It was such an important time for me as I finally felt we could tell people and that the chance of miscarriage must surely drop even more dramatically.

By this point a few of our close friends had also shared their happy pregnancy news. I woke up on the Saturday morning with uncontrollable anxiety, I just knew this wasn’t going to happen for me. I felt ridiculous calling my parents and begging them to come to another scan with me.

I just needed the reassurance everything was fine. I laid down on the hospital bed and the sonographer went through the routine motions, straight away the daunting silence told me something was not right. I could see on the huge screen the little tiny baby I had seen only a couple of weeks ago was still. There was no flickering heartbeat and no waving arms.

I just screamed, what had I done? Why had this tiny little thing died? My dad had to call my husband who was abroad. We couldn’t believe it this was our reality. I was overcome with emotion and shock. Another silent, missed miscarriage. How could this world be so cruel? I had done everything right, and I just felt that I was being punished, but I didn’t know what for.

The next few days were terrifying, I was so scared I would miscarry naturally and have to collect the tiny baby as it would need to be sent for genetic testing. I couldn’t sleep, every minute, every symptom made my body freeze. At thirteen weeks, we luckily managed to get booked into having another surgical managed miscarriage with the same doctor as before. The staff were all incredibly kind and understanding; I will always be so grateful to them. I had to answer some very challenging questions, did I want the ashes from the baby, did we want to arrange a funeral? Questions I never thought I would ever be asked. We decided we would have the remains sent for testing so we might find some solace in knowing what went wrong.

Five weeks following our operation, we were sent the results that our baby was a little girl, and there was a significant chromosome abnormality. She had Triploidy where there are three copies of all chromosomes. She would not have survived more than a few days if the pregnancy had developed to full term and there would have been serious risks to my health.

We are now having genetic testing to see if this was sporadic or could have been hereditary. Until we know the results, it is not safe for us to try again naturally, if we even ever choose to do so. I felt some relief that this was not my fault, it was my body recognising that the baby was not developing correctly. All the medication I was taking, all the hormonal problems I was told I might have, were no longer a concern and certainly not the problem.

Through the distress and utter sadness, my husband and I have experienced such kindness from our friends, families and colleagues. My husband has been the most incredible support and thankfully our marriage has only strengthened through our grief. For me, the most important thing people can do for a friend or family member that has suffered a loss is to acknowledge what has happened. The widely held stigma is that the first trimester miscarriages are not a major concern, they are common and something which many women experience.

Our society suggests that this is an inanimate loss, and that you should move on and try again. This is not the case, it is the most painful and isolating experience I have ever encountered.

One of the most difficult things is when your friends who are expecting feel uncomfortable sharing their news with you. The thought that they may be worried I will be jealous really upsets me, as I am so happy for them. I don’t ever want my experience or angst to reflect negatively on other expectant mothers. However, what I have understood is sometimes being around newly pregnant women, seeing pregnancy announcements on social media can be a trigger in reminding me of the trauma we have experienced.

Women should be encouraged to grieve and to be able to talk about this openly and be honest without judgement.

Please don’t ask me when we will try again, please don’t ask me what are the next steps, please don’t ask me what was wrong with me and do we have any more results of our tests. Please let’s talk more about miscarriage and pregnancy loss.

I’m not sure what my future will bring. Perhaps we will have a family naturally or perhaps a different path than we previously imagined has been chosen for us. I would like to thank everyone who has supported us through the darkest of times. Our journey is yet to have a happy ending but I still harbour some hope.