We couldn’t find the words to express our happiness in October when we found out we were pregnant, 2 months after getting married. This was our first pregnancy so naturally some anxieties were there.

…the whole pregnancy so far, I had no reason to think anything was wrong.

My symptoms didn’t seem as bad as some of my friends so I thought I was quite lucky. We decided to book an early private scan which was when I was 6w6d, the scan gave us mixed feelings, the reassurance that everything was in the right place, however, we were told we measured at 5w6d and had a chorionic bump. The sonographer suggested we return in 2 weeks if we wanted. I left feeling deflated and immediately booked a scan for in 14 days’ time and tried my best to put it to the back of my head for those 2 weeks.

Scan day arrived and the first question we were asked “have you had any bleeding or cramping?” No, I hadn’t, the whole pregnancy so far, I had no reason to think anything was wrong. The scan went on for what felt like a lifetime and the silence was deafening, until I was told to get dressed and the sonographer’s assistant was going to make a call.

We were told there has been no growth and we were being referred to the EPU. We were asked if we wanted to see the screen and said yes, so we were shown the screen and I was completely and utterly shocked at what I saw compared to the first scan, the whole area now looked like it was filled with lots of small holes – I remember asking what it was and the sonographer saying it’s cystic tissue. I was so shocked at how much had grown, so quickly. I don’t think this is an image that I will ever forget.

My heart broke because in that moment, I knew, everything I had googled, was now my reality.

I spent the night crying and googling anything to search images that matched what I had seen and came across one which said molar pregnancy – something I had never heard of, I read some more and thought, this can’t be it, I don’t fall into the high-risk categories.

The next day at the EPU, I was taken for my blood pressure and the nurse said “you’re here for a partial molar pregnancy, is that right?” My heart broke because in that moment, I knew, everything I had googled, was now my reality. I broke down and went back to my husband and just said “it’s a molar”.

The scan then confirmed it and we were told it is likely a partial molar, then, in one sentence the consultant went from saying sorry for the loss, to the rare occurrence of a molar, to the potential of cancer. I was a mess at this point, we were given the option to go home and come back tomorrow or wait to speak to a doctor. There was no way I was going home so we were taken to a small quiet room and waited for a Dr, who brought some leaflets, took my blood pressure and a blood test. My HCG was 176,000 and we were asked to return in 4 days for my pre-op bloods, by then my HCG was >225,000 and my surgery was the next day (5 days after first diagnosis and 6 days after the scan).

10 days post-surgery, I received a call to explain testing was complete and it was a complete molar. My heart broke again. Everything I had read and listened to with partials, was no longer the case. Whilst the follow up is the same, things can be slightly longer and a higher % of requiring further treatment with completed.

I also knew (from my research) that you cannot try to conceive again until you are discharged, something I struggled with the most because it is all totally out of our control now and a waiting game. How can we have gone from being on cloud 9 finding out we were pregnant so soon into married life, to now have this what feels like, a never-ending wait.

I still cannot get my head around molar pregnancies, I have been told time after time, it’s a freak accident – not great when all you want is answers.

15 days after my surgery, I received my first kit and pack from Charing Cross (specialist hospital for Trophoblastic Tumour Screening). I have since had 2 blood tests and am currently waiting for the results from my latest. My drops have been great so far (thank goodness) and I know I am lucky at this point to have experienced such drops compared to some women.

I still cannot get my head around molar pregnancies, I have been told time after time, it’s a freak accident – not great when all you want is answers. There isn’t loads of information around and I found some Facebook groups to be a source of support and guidance.

To anyone reading this, worried, scared, distraught, I feel you, please reach out. It’s an extremely anxiety inducing time, I feel like my life currently is a cycle of waiting and anxiety, waiting for my kit, going for blood tests, waiting for the results, waiting for my next kit. I’ve also felt quite lonely, only a very small number of people around me (4) have heard of a molar pregnancy, and people don’t really fully understand the torment that comes alongside. I am remaining hopeful that I will not require chemotherapy and my HCG continues to drop in the way that it has, but I know this isn’t a given until we reach “normal” which is less than 5 and then we are discharged following a few extra weeks of confirmatory bloods to check levels remain normal.

I am spending my time currently doing lots of walking, eating well and having regular acupuncture to try and get myself into the best place physically and mentally for when we are discharged.

PS The image used is from Stephanie as her little flower corner brought me some light in the darkness at that time!

I never imagined how incredibly difficult it would be facing a miscarriage, until I’ve now had to experience it myself.

For 5 months myself and my husband had been trying to start a family. A shared dream that meant everything to us. The day that we finally saw that positive symbol on the at home pregnancy test was all our hopes and wishes come true, with the further 3 positive tests carried out to further confirm it.  With the greatest excitement I started the process of booking our first midwife appointment.

Just 5 short days after that initial positive test I started to bleed.  In a state of absolute distress and desperation I phoned my GP surgery which was still open to be immediately turned away and asked to phone NHS 24.  After being triaged by a nurse they gave advice to phone the maternity department at our local hospital. Who took details but advised the Early Pregnancy Unit was closed and that I would receive a phone call from them to following morning.  In the meantime, I was to put on a pad and if any worsening symptoms I could access A&E.  Since my bleeding started it was approximately 16hrs until I finally came face-to-face with a health professional and investigations were commenced. I can’t describe the level of distress and anguish during those long hours we waited.

Although I had my husband at my side, he was still trying to be optimistic and hold onto to the hope that everything would be okay.  Whereas I knew in my gut that I was likely losing our baby.  A sleepless night spent bleeding and knowing there was nothing I could do about it. The questions that kept circling round my mind were ‘what did I do wrong’ and ‘what is wrong with my body’ that I was unable to nurture this little life. It was my job to grow and keep our baby safe, I failed that role before it even truly began.

It was called into question by the nurse whether I had even been pregnant in the first instance.

We were seen promptly the next morning by the Early Pregnancy Unit when it finally opened. It felt like some horrible nightmare when we went into the ultrasound and they told me that they couldn’t find anything. I was in a complete daze and state of shock as we went from getting ultrasound scan to going into the specialist nurse.  The first question I was asked was ‘what did they tell you from the scan?’.  Something I thought that surely the staff could have communicated about before I went in.  Instead with the deepest pain I echoed the words I had been from the scan that they ‘couldn’t find an embryo’. It was called into question by the nurse whether I had even been pregnant in the first instance.  Which immediately made me feel like all this trauma I was experiencing was invalid. I knew that I had been pregnant, that I had felt that little life growing inside of me. After I defensively told them that we did 4 home pregnancy tests all of which were positive and that I could show them the photos, they conceded that a false positive was unlikely.

A blood test was fun taken to determine my Human Chorionic Gonadotropin (hCG) levels and I was told that I would be phoned later that day to advise of the results and to make a plan from there.  But then within that very same conversation I was suddenly being offered leaflets about miscarriage and a memory box.  How on earth did the conversation go from it being called into question whether I had even been pregnant, to getting a blood test taken (which I didn’t even have the results back from) to being given information on miscarriage?!  It was an inappropriate time to be given that information and I was in no state psychologically to receive it.

How could I possibly flush away or bin that little life that meant everything to us?

The bloods confirmed what I had known I was 3-4 weeks pregnant. I was asked to return 48hrs later for a further blood test to confirm that my hCG levels had dropped and that the pregnancy was over. During the course of that time, I was consumed with grief and horror of continuing to bleed and then seeing what I believed to be our baby.  I had absolutely no idea what to do.  How could I possibly flush away or bin that little life that meant everything to us. This was something we were left alone to try to cope with.

When we returned to the hospital 2 days later, I expected to be seen by the specialist nurse again. Instead, she brusquely asked if we were waiting for an appointment and it was another member of staff who eventually saw us.  It was apparent from their upbeat manner of the member of staff that they had no idea that we were there to confirm that I had experienced a miscarriage.  It was over the phone that I then had the confirmation that my hCG levels were no longer detectable and that it was a complete miscarriage.  I didn’t even have the opportunity to be face-to-face to get those results and to be able to ask the questions that I had finally had the time to form. Instead, it was just a voice over the phone and what felt like a generic consolation that they would try to get me in for an early scan if I did get pregnant again.

…it’s become a norm that such devastating news of a confirmed miscarriage is provided in such an impersonal way over a phone call.

Over that course of the time period that I miscarried, I received 2 letters from the NHS one for the Midwife and another for an obstetrician appointment for what would have been my first scan. I was beside myself that I would now have to face phoning these services to cancel these appointments and explain that I’d had a miscarriage.

I felt so let down and angry that within our healthcare system that it’s become a norm that such devastating news of a confirmed miscarriage is provided in such an impersonal way over a phone call.  That miscarriage is seen as being so common and routine, that you are provided with such generic empty words of consolidation and some leaflets in your hand. To then have to relive that loss in your time of grief when presented with letters for maternity and obstetrician appointments you now no longer need.

Our whole world changed the instant that we discovered our baby will not make it into our arms.  This loss carved a deep wound within me, presenting a challenge that I had never been prepared for. The emotional toll became an overshadowing cloud, casting doubt and despair over what should have been a time of excitement and hope. I found myself in a spiral of grief, trying to reconcile my desire to start a family with the heartbreak of this unfulfilled dream. The initial shock of the miscarriage was followed by a profound sense of isolation. As myself and my husband grieved and handled this experience very differently.

Small changes within healthcare practice….could have helped to relieve the additional pain caused by our miscarriage.

The loss experienced through miscarriage shouldn’t be minimised or medicalised.  Small changes within healthcare practice such as information at the right time and at minimum the opportunity for a face-to-face to receive the confirmation of the miscarriage, would have made us feel like our loss was acknowledged and that we were treated with due sensitivity, empathy and compassion.  Having a more efficient system of cancelling and preventing the provision midwife and obstetrician appointment letters after miscarriage or staff informing services users that letters may have already been mailed, however, no actions will be required from the service user as these will be automatically cancelled. All these steps, could have helped to relieve the additional pain caused by receiving these in the post after our miscarriage.