Endometriosis: One year since

My eyelids are slow. I am dragging them open but they are heavy and fall closed.  

Now I can hold them open and I’m on my back staring at a bright ceiling. It is fuzzy. I don’t have my glasses. I must have made a noise because someone has come with my glasses at the ready. The first thing I do is blink around for a clock. There’s one, just out to the right-hand side of the open curtain at the end of my bed. The black numbers on the white background tell me that it is 12.30pm. An immense relief floods from my chest across my body. I breathe out and think “they found something to do”.  

A year today I had exploratory surgery for endometriosis. The surgeon did find a lot to do! And the impact on my day-to-day life has been huge.  

I have a longer pinch brewing on the whole process of my diagnosis and what has changed, but I wanted to mark the year today. 

A recent online survey of people in Aotearoa estimated the delay from symptoms starting to an endometriosis diagnosis to be on average 8.7 years (1). An average is vital information for understanding a condition but hides the range, hides the people.  

For me, it’s been over twenty years of seeking answers. A search complicated by having multiple chronic pain and health conditions.  

The surgical notes shine a clinical lens on what was removed:

Findings: Quite widespread inflammatory disease with early nodule formation in the right Pouch of Douglas and early obliteration developing there. Disease over the right bladder peritoneum, both side walls and the right Pouch of Douglas. The left Pouch of Douglas was clear. The left ovary was minimally adherent but otherwise normal, right ovary normal, tubes were normal. Uterus had a 4cm fundal fibroid but was otherwise unremarkable…Quite friable and inflammatory tissue but also quite deep into the left side wall and right Pouch of Douglas.

Removing this tissue has eased the symptoms I experienced both during my period and the rest of the month. Cramps no longer radiate from my ribs down to my knees. Bloating no longer rises from under my breasts down to my groin. Bowel upsets are no longer a multiple-times a day visitor.

But, this day a year ago, I didn’t yet know the findings or how my symptoms were going to change after healing.

In my early morning consultation pre-surgery, the surgeon estimated that if there was no endometriosis the surgery would take about 30 minutes. If there was endometriosis, up to 4 hours. The last thing I looked for before handing over my glasses in the operating theatre was a clock. It said 8am. So, 12.30pm was on the long side.

Time itself a source of validation. 

1. Tewhaiti-Smith, J., Semprini, A., Bush, D., Anderson, A., Eathorne, A., Johnson, N., Girling, J., East, M., Marriott, J., & Armour, M. (2022). An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain. Scientific Reports, 12, 4425. https://doi.org/10.1038/s41598-022-08464-x

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