In late July 2016 I discovered I was pregnant. My partner and I were delighted. A week after we found out, I started spotting. It was light and sporadic and varied in colour from brown to pink to copper. I started feeling very sickly, nauseous, bloated, had period type cramps and my breasts were extremely sore. As it wasn’t a lot of blood, and people always tell you that some bleeding in early pregnancy is normal, I didn’t contact anyone. After 4 days it was still happening and I was beginning to worry. I called Liverpool Women’s Hospital’s Early Pregnancy Assessment Unit (EPAU) and they booked me for a scan the following Monday. At the scan the sonographer identified 2 foetal sacs but said it was slightly too early to detect a heartbeat. I was given an appointment for 2 weeks time and told to monitor my symptoms and bleeding and to return if I had any other concerns.
During the intervening 2 weeks the bleeding and symptoms remained and got worse. I was passing large clots at times and assumed that I was miscarrying. I returned to Liverpool Women’s Hospital after 2 weeks for my scan and was told that the sonographer could not see any foetal sacs on this occasion. There were lots of clots visible so I was given medical management to bring on the evacuation of the clots and tissue. I was given an appointment for another 2 weeks to confirm that all the tissue had come away.
Over the next 2 weeks, my symptoms did not stop. I was still bleeding on and off, there was no big loss of tissue and the sickness changed to vomiting and was getting worse. At my scan appointment I explained the bleeding and how I was still feeling to the nurse. She scanned me and diagnosed a Molar pregnancy. She said that the tissue had not left my body and was multiplying extremely quickly which was keeping my HCG levels high and explained why my symptoms had not gone. As this had gone on for over a month, the nurse arranged for me to have an operation to have the tissue removed (D&C) in 2 days time.
The nurse explained what a molar pregnancy was and gave me leaflets to help understand what had happened. She also explained that I would be contacted by the hospital in Sheffield who provide the monitoring for molar pregnancies.
I came in for my operation and received a blood transfusion as I lost 1.5 litres of blood. After my operation I went home and my symptoms seemed to have stopped. After a week I began to feel sickly again and my breasts were sore, then I started vomiting. This continued and 16 days after my operation I suffered an extremely bad haemorrhage at home. I returned to the Women’s hospital where I was scanned and it was confirmed that the molar tissue had grown back. I had another operation to remove the new tissue the following day. All of the tissue was removed. I went home and continued to bleed, losing clots and molar tissue.
During this time I had an appointment with my Consultant at the Women’s hospital. She went over everything that had happened to me since diagnosis. She explained again that the Sheffield centre would contact me to monitor my HCG levels and that I would be monitored until they returned to normal, however long that took.
A nurse from the Sheffield centre contacted me and explained that I would need to provide fortnightly urine samples to assess my levels. She also explained that if they were consistently high I would require weekly blood tests. She said that if my levels returned to normal within 56 days that the monitoring would end. If they did not, I would be monitored until they did, and then for an additional 6 months to ensure everything was normal. She explained that there are different types of molar pregnancy and what they are. She then explained my own personal diagnosis which was a complete mole with a separate twin. The complete mole had grown so quickly and aggressively that it had enveloped and overcome the other foetus.
My levels started off high and remained that way so I provided weekly urine and blood samples. From September to December my levels began to drop but not quickly. Sometimes they went down, sometimes they went up. There were several occasions when I was told to prepare to come to the Sheffield centre for treatment, should my levels increase again, but they always dropped the following week so I didn’t attend. I found this quite a difficult period as it felt like it was a never ending weekly cycle of testing blood and urine and getting nowhere. My bleeding and other symptoms including sickness, nausea, vomiting, and sore breasts all continued until December 2016.
In mid December 2016 my bleeding stopped. My other symptoms reduced and then stopped.
In January 2017 my levels dropped to normal. I stopped providing the weekly blood and urine samples and could now provide fortnightly urine samples only.
My levels did not rise above normal for the 6 months between January and June 2017. In June 2017 I was officially discharged from monitoring by the Sheffield centre.
It has been a long, drawn out experience for me. It has affected me far more than I initially thought it would. I have grieved for my lost baby, along with worrying about my health and the possibility of treatment at Sheffield while trying to maintain normality for my 10 year old son, partner and family. My partner and family have been extremely supportive and understanding.
I will never forget this period in my life; and to other people in this situation I would say that you won’t either, but you will be able to get past it. You will be able to see the light at the end of the tunnel. It can be all consuming and you may feel like you are the only one but you are not alone. There are support groups out there. The Sheffield centre has one, your local hospital will have counselling available if you need it and there are other web sites you can find online.
I wholeheartedly recommend speaking to the staff at the Sheffield centre. They have been extremely supportive and on hand when I have needed to speak to them. Any time I wanted advice or someone to talk to, they have been more than happy to provide an ear for my questions and a shoulder for me to cry on.