A Clearer Picture

The last few months have certainly been unusual for us all. We’ve now spent more of 2020 in lockdown than out of it, and the isolation has been affecting millions differently. There are concerning things happening globally, nationally, locally, and individually, each resulting in fear, anger, confusion, creativity, and hope in their own way.

Amidst the pandemic and all it’s brought, I’ve been dealing with something else unexpected. I’m a big advocate of openness and honesty around female health, as the silence and lack of understanding around certain issues can and has been damaging for those needing help or answers and so wanted to share what’s been going on.

At the end of April, I experienced the worst pain I’ve ever known – at about 11pm, just falling asleep, it was as if someone was stabbing me low in the abdomen. It got so bad that Simon called 999 who –given the overstretched resources – decided it wasn’t necessary to send anyone out, so I spent over an hour out of my mind in pain, aware that its location seemed to be ovarian and certainly not normal. The following day I called the GP and they put through a referral for an ultrasound. Again given the poor timing of my own medical crisis, I was on a waiting list as the pain had subsided leaving me tender and tired but ‘safe’.

Almost exactly a month later, I experienced the same pain again – different time of day, different time in my cycle, but similar location. We rang 111, as well as a doctor friend, feeling conflicted about going to A&E and the risks associated during a pandemic. After a further phone consultation, I was given a next-day face to face appointment with the GP – which given the current crisis did suggest they were taking me seriously. With great efficiency, I had bloodtests and a physical examination in the same appointment, with most of the results back the same day. The suggestion was that I almost definitely had ovarian cysts, which may have ruptured, and I was given an urgent referral for an ultrasound at the hospital as an ovarian marker had also come back as very high.

A week later, the ultrasound showed a 5 ½ cm cyst on one ovary, and a further internal scan revealed other tissue which could have been the remnants of a rupture, fibroids, or something else. I was asked questions around my gynaecological history, any history of cancers, endometriosis – all routine checks that were nevertheless a little daunting to hear.

I was immediately referred to a gynaecologist, who advised during a phone consultation that whilst the tissue on one side was unclear, the cyst did appear to be endrometriotic. He ordered an MRI for a clearer picture, plus more bloodtests specifically to recheck tumour markers, pregnancies and tissue damage. Within 72 hours, I had another round of tests which thankfully all returned normal, and a 45-minute MRI scan to get a closer look at whatever was going on.

With yet another phone consultation booked for a weeks’ time, I’ve had the letter with the results of the MRI, confirming the endometrioma. The next steps remain uncertain, a journey possibly to include a laparoscopy (keyhole surgery) to remove the cyst and find any additional tissue, and more conversations to be had around possible long term impacts, reoccurrences, the risks or consequences of no action.

What’s remarkable is, as scary as this may be, it’s like someone handed me an extra puzzle piece and I can now see a clearer picture. Symptoms that I’ve lived with for years but never thought to pay close attention to are suddenly cast in a new light and make a lot more sense. I’m fortunate in that until April, the sensations I’ve had for 15 years have not been significant enough for me to question them or pay too much attention, causing discomfort but not impacting day to day life to any great degree. Whilst the level of pain does not necessarily indicate the presence or severity of the condition, I am grateful that in reality my physical body is essentially unchanged regardless of any diagnosis.

I’m discovering that quite a few people I know have endometriosis with varying experiences, and yet it still baffles me at how ignorant and naïve I’ve been to my own body, not really understanding what it’s possibly been trying to tell me for years. But it also brings me peace, taking something scary and unknown and showing how others are dealing with it, coming through treatments, living their lives and not holding back. Which is encouraging. My life isn’t really changing, I am now just starting to understand it a lot better. And can be kinder to myself as I go through it.