While sitting in the hospital waiting room the other day waiting for my name to be called- it was my post excision surgery checkup, I could feel my heart starting to beat really hard and fast, my palms became sweaty, and my eyes starting to well up with tears. In my hand was a list of questions I hoped to ask in my appointment, most of which concerned fertility. It’s well established that endometriosis is linked to a lower rate of fertility, with increasing severity of the disease further decreasing likelihood of conception. I’m a stage four gal- never wanting to do things by halves, and this has been worrying me since my diagnosis in August 2014. Between you and me, Mr B and I are just starting to try for a baby, so the fertility issue has been on my mind a lot lately.
Sitting in that over lit waiting room I had a sudden epiphany- my fertility is Schrodinger’s cat! For those not as nerdy as myself, ‘Schrodinger’s cat’ is a thought experiment from Physics, which postulates that it is ‘observation’ (i.e ‘looking’) that makes things real . This short video explains the basic premise very well:
In this scenario the cat is my fertility and the poisonous gas is the toxic combination of my endometriosis and adenomyosis. Good right? My brain fog had clearly recovered enough to formulate a high level metaphor- progress right there!
As I’ve never tried to have a baby before, my fertility is simultaneously dead AND alive- and we won’t find out which until we try. There are no definite answers to be given right now.
The uncertainty of this situation scares me. It follows me around daily like a big black cloud hanging over my head that nobody else can see. I want to beg my doctor for concrete answers about my situation. Perhaps a definite ”you can’t” would be easier to handle than constant ”maybe you cans”? Although to have hope means something. You never imagine that you will have to question your fertility, it’s just there until you need it right?! I’m in my 20s, this can’t be happening! The pain of this certainty being taken away is just indescribable.
Worrying about your fertility can be a very lonely experience, especially when you have loads of friends who are all pregnant or new mothers. I’m so happy for them, I’m just sad for me. Maybe unnecessarily sad, but still sad. But I was never the girl who daydreamed about having kids; dressing up dolls and picking out potential baby names. It was meeting Mr B that changed all that. Crafting out our future together I can totally see children in it. I want that. I’m ready! I think I’d be a good mother. He would be the most AMAZING father.
In my appointment, which ended up being with an specialist endometriosis nurse (which was excellent by the way- she gave me an hour of her time and answered all of my questions with a high degree of knowledge and empathy), I tried my best to explain all my fears:
1) How I constantly swing between positive thoughts (‘‘Your Fallopian tubes are clear” and ‘‘You’ve had excision surgery now, that will help”) to negative ones (”Your right ovary is a wreck”, ”You have to much inflammation” and ”You have adenomyosis”) a thousand times a day in some weird fertility related bi-polar.
2) How I’m so scared to come off hormones as being on them has kept me going for most of my life, and because I’m scared that my endometriosis and adenomyosis will go wild without them.
3) And how I’m so scared to face an infertility journey, if that what comes, and am not ready for it. I have become familiar with what it does to people and I feel so guilty for the possibility of my husband never being a father or my mum and dad grandparents.
”You’re a worrier aren’t you?!” my specialist nurse commented. That’s true, but I’d call myself a realist. How can I not be, when I’ve done my reading and met so many people affected by this problem? It’s another example, so familiar to us those living with chronic illnesses, that people ‘don’t get it until they get it.’ They never will.
Right now I can’t answer all of these fears. Nobody can. All I can do is try and see what happens. It’s time to open the box and reveal the kitty’s fate. But I’m so scared to look inside, I don’t know if I can handle what’s in there.
I’d love to hear your thoughts and experiences of fertility with endometriosis and/or adenomyosis. Did you fear the worst but get lucky? Or do you stay positive that things will work out? Are you aware of actions to take which may help?