Written by Emma Kemsley
Content warning: pregnancy loss, pregnancy scans
I wanted to use my first column of 2021 as a time to reflect on the past year. A year that has been the worst for my fertility and endometriosis to date. Never has the phrase ‘what doesn’t kill you, makes you stronger’ felt more appropriate as a summary for 2020.
There’s no denying it was a difficult year for everyone, but if you suffer with endometriosis or infertility the pandemic made things that little bit worse. Laparoscopies were cancelled and IVF clinics closed their doors. To some of us, it felt like time stood still during lockdown. If this was you, I’m sending you a big virtual hug.
For me, 2020 was the worst year of my life. It started with my sixth IVF cycle in January. In fact, let’s rewind, it actually started with a false positive chlamydia test at an IVF clinic. Stress! I quickly pulled the cycle and couriered our last embryo to a new clinic. The following week, our home was burgled, and a window fell on my head while I was brunching at a café. It’s safe to say, 2020 was doomed from the start.
On 27 January, I had a frozen embryo transfer and on 6 February those two little pink lines appeared. My six, nine and 12-week scans showed a healthy baby. However, it was short-lived. In April, at the height of the pandemic, an 18-week scan showed our baby had severe PUV; a blocked bladder, which would prevent his kidneys, lungs and heart from developing. We had no choice but to terminate for medical reasons (TFMR).
The weeks that followed are blur. In some cruel twist, I had to arrange my own termination, and in some ways, it was harder than the surgery itself. My endometriosis meant I was unable to give birth, yet I was too complicated for a surgical procedure at a termination clinic. Almost three weeks later, I eventually secured surgery at a hospital.
It’s a decision no parent wants to be faced with. I could’ve fallen into the depths of despair. I could’ve cried until my eyes run out of tears. It would’ve been completely acceptable for me to do so, and please know if you’re in this position right now, then take all the time you need.
I was tired and drained, but endometriosis has made me strong. My journey has been long and brutal. It’s caused nothing but disappointment. In some ways, it has made me devoid of emotion. Rather than sink, I chose to find the positives and hang on to them for dear life. I got pregnant, something doctors have said is unlikely. Not only had I got pregnant, I achieved 20 weeks without a blip.
I often think about my journey with endometriosis and fertility as an icy mountain to climb. I’ve been up and down the mountain several times. I’ll be halfway, and a storm knocks me back; be it an endo flare-up, hospital admission or surgery.
When I have embryos to freeze from an IVF cycle, I feel as though I’ve climbed up the rocks a little higher, the summit in sight. I spend the time between periods and IVF cycles clinging to the edges, scrambling away. The TFMR was an avalanche. It swept me off my feet burying me under guilt and grief, while I struggled to gasp for air. My baby was gone. I was at the bottom of the mountain once again.
Days later I pushed through the heap of snow, breathed in the fresh air and I saw a new perspective. It was strangely like a sense of relief, the thing that I was most scared of had happened, and I’d survived.
If I could almost be metres from the top of the mountain on this occasion, then I can do it again. Next time I’ll be better prepared with more precautions and stronger armour.
While I chose positivity, I also used exercise as a distraction. Running, HIIT classes and kayaking along the River Cam. I was spurred on by adrenaline and in hindsight, probably grief, but while I thought I was running to a newfound positive state of mind, I was actually running myself to an ovarian abscess, which would make me very ill indeed.
Seven weeks after the TFMR, I was admitted to the hospital. I crawled into a&e on my knees adamant it was just a bad period. I had been sick, every 15 minutes, for 36 hours, yet I still thought I was fine. This is the reality of my endometriosis. Sickness and pain are a common occurrence.
A sky-high temperature got me the best suite on the ward. After seven days of three different IV antibiotics, a LOT of vomit, horrendous pain and a few emergency surgery talks, I began to heal. The doctor uttered words I will never forget: “You need to take your pain more seriously.” If I’d left it another 24 hours, I could’ve died. It was a wake-up call.
It took almost four months to feel semi-healthy. My periods became erratic, I was in pain daily, on and off the toilet every 10 minutes with rectal bleeding and a constant pull on my bowel, and my boobs leaked like a continuous reminder of what I’d lost. Every morning I woke up, I was filled with dread at the thought of having to endure another day of these symptoms. Sleep was the only escape I had.
I begged my endo team for help, and they were great. Emergency scans and even surgery was arranged. However, I have chosen to proceed with one final IVF. It comes with its risks but I’m excited and hopeful.
Thankfully I now feel healthy. I’ve learnt to listen to my body, to trust it and we’re slowly becoming friends again. Despite the horrors of 2020, I’m thankful for everything it taught me. Bring on 2021, it can’t get any worse, right?
Five tips for positively managing endometriosis:
1) Listen to your body; you know your body better than anyone else
2) Don’t feel guilty about saying no to plans
3) Rest when you need to; sleep is key for healing
4) Ask for help when you need it – it’s ok to do so
5) Take your pain seriously; learn your limits and know when you need to seek medical help