At work I live for information. Who, what, when, where and why are the key questions in journalism. They rarely let you down. (In life too). I almost want to know too much, especially before I interview someone. Knowing the answers, or what they might be, before you pose the question, is perversely a key part of live interviewing. Hence why I work so closely with my producers who glean as much detail as possible - through a mixture of research chats with the person in question (if they are available) and reading. And then I read some more and we keep going until we feel we know all we can.
Why am I telling you this? It is because I realise that this dogged curiosity and thoroughness does not extend to my health, well specifically my fertility and endometriosis.
In fact, I find myself actively tuning out in medical appointments, impatient for doctors, scanners and nurses to stop talking.
It’s a very odd and out-of-character reaction.
I found myself examining my response earlier this week while watching the UK premiere of a new docu-film, Below the Belt about four women’s experience of living with endometriosis.
The creator, Shannon Cohn, a fellow endo sufferer, like my lovely date for the night (shout out to wonderful writer and comedian, Eleanor Thom, the author of the Endo bible Private Parts) has done a powerful job in bringing to the screen the unseen. How women live in excruciating pain with no answers and often, very little reprieve.
I urge as many as possible to see it. It’s an education about a silent illness screaming in the bodies of those millions of women afflicted.
And it exposes the major knowledge gaps that stubbornly exist. There is no cure. There is no dedicated pain relief medication. There is no understanding as to what causes endometriosis.
It took me more than two decades to be diagnosed once I hit my thirties and couldn’t get pregnant. And my periods were wiping me out - with no meds hitting the sides of the bone-grinding pain. (It took until I was 35 to also be diagnosed with adenomyosis - endo’s evil sister and about which even less is known).
And yes, I had a laparoscopy (public health message - this keyhole procedure is presently the only and highly invasive way to be definitely diagnosed) and had some of my endo lasered out of me). And no I didn’t fall pregnant in the six long months afterwards like the doctors said I might. And no it frustratingly didn’t resolve my pain.
But then what?
Of course I believe in diagnosis. It was reassuring and dare I say it, gratifying to know I wasn’t going mad; that I was right - something was actually wrong with me - and the doctors were incorrect.
But living with a disease about which knowledge and expertise is severely lacking amongst those meant to be the experts - has left me feeling utterly disenchanted and that pushing for answers, where there are none - is a totally futile experience.
Equally with my infertility - no one knows for sure why each round failed. Was it me or the embryo? Or both?
Incapable of getting meaningful responses, despite my best efforts, I’ve lost my appetite for it.
So I’ve stopped listening. And asking.
It seems pointless.
I also loathe how medicalised my life has become during these years of IVF. A process which is perfectly natural for the majority (at least the act of becoming pregnant - thereafter it’s often a whole other ball game) and doesn’t involve daily vaginal camera probes and blood tests - I don’t want to hear or learn anymore.
I wish I didn’t know what a yolk sack is; a fetal pole; a decent number of eggs per cycle. If I could I would cleanse my head of it all.
It is knowledge I wish I didn’t have.
Sometimes knowledge isn’t power; it’s pain.
How about you?
I hear you in so many ways.
I too had my endo lasered, back in 2013.
I normally geek out, learning about everything/anything, but IVF/endo have so many red flags, I just don’t want to know. I want to sit in a place of hope and belief (and denial?), and be the medical exception.
At 41 and single, I start my 1st IVF round next month to harvest eggs (statistically futile, but I want to feel hope for the future), before I make lucky embryos for transfer in September.
I’m sitting here wishing both of us a wealth of health and luck. I believe.
With love XX
I relate. I’ve tried and been unable to have children in two different relationships over several years. Many doctors appointments, many scans, many tough confusing conversations and not much fun!
The thing that makes me most angry is when people say women don’t know their fertility declines with age - hahaha! How could we not? In my case this knowledge has been a real pressure and all medical advice seems to just add negativity and stress. I envy friends who never had to learn their hormone levels or spend so much time worrying about things that are not possible to control.
It seems that all the facts can get in the way of our natural instincts and ability to make decisions. I’m trying now to listen to what I actually want and believe, rather than if I’m on the right side of the stats.