“You Started A Fire”

I was wired to a different planet (a planet of anxiety and laxatives) when I finished writing and editing the first part of this story the night before I went in for surgery, so I was hoping this second instalment would be a little more coherent but in reality I still have many thoughts about everything that went before (and after) my endometriosis surgery so this may just be a collection of those. 

Firstly, let me go back to where I finished off the last post; the choices I made that may have inadvertently led me to being diagnosed with endometriosis and adenomyosis, and requiring surgery. I want to share these details not to scare anyone, or suggest you shouldn’t make the same choices – I would make both of them again – but being forewarned is being forearmed and if I’d known these connections before I was sitting in consultation with my surgeon, I would have maybe been less surprised, confused, and frustrated at the preceding year and a half. 

“You started the fire, and then you poured fuel on the fire” – said in the least accusatory but most matter of fact way, was the statement delivered by my doctor. Having gone through my medical history at the beginning of the consultation, the first thing that stood out was that I had come off birth control in my early 30’s, after 15+ years of putting synthetic hormones in my body daily. As a lot of teenage females experience, I went on birth control at 15 – mostly to try and get a handle on irregular periods – and then the daily habit was never really questioned again, until I was 30 and I brought it up with my doctor. And the trigger for me was because I wasn‘t able to get the same pill in Canada as I’d been on in the UK. So when I started to look into it and consider the potential challenges of switching pill, I decided I actually didn’t want to be putting unnatural (as I see them) elements in my body anymore. I wanted to truly know what my hormonal baseline was – my mood, my weight, my cycle, my skin… all of those things up until that point had been affected by a daily pill. 

Unbeknownst to me, birth control can prevent the growth of new endometriosis lesions, and is often used as an effective treatment for many people with endometriosis, and can provide pain relief, and regulate the menstrual cycle. So it is likely that the birth control kept my endometriosis at bay. I’m not mad about that. But I would have loved to know that coming off it could make me more susceptible to the development of endo – or even what endo was. It doesn’t mean I wouldn’t have still chosen to come off it, but just to know that could happen would have been useful information, especially as I started to have unexplained symptoms. I’m aware a doctor can’t list out everything that could happen but the very fact I didn’t even know about endo talks to females being less than well educated on our own bodies. 

The possible second best/worst decision I made was freezing my eggs. Again, a phenomenally empowering, reassuring decision that I would make again every day of the week if I had access to the financial means. However, according to my doctor, but to the disagreement of a lot of IVF and fertility doctors, there has been shown to be correlation between someone going through either egg freezing or full IVF and them experiencing accelerated endometriosis symptoms soon after. The thinking behind it, which made perfect sense when explained to me, is that the over-abundance of hormones you inject yourself with in a relatively short space of time when going through these processes is the cause. You are (necessarily for those procedures but unwittingly otherwise) pumping yourself full of synthetics that promote the growth of yes your eggs (yay!) but also potentially endometriosis lesions (agggh!) and so it’s a necessary risk. 

Given that at the time I froze my eggs I didn’t even know I had endometriosis, and in fairness to doctors, it is very hard to know it’s there without going in surgically, I had no known understanding that those few short weeks of daily hormone injections could be the fuel to my no-longer-on-birth-control fire. Again, I may not have changed either of those decisions had I known but being informed is always a preference. 

It was yet another example of how little we know about women’s bodies – both in general (the link between the egg growth and extraction process of egg freezing and IVF and endometriosis acceleration is still unproven) and individually (it felt like something I should have been educated about at some point, as I was making these decisions about my body). 

I don’t carry any guilt or anger about it, I’m just glad I finally had some information that made sense, because I kept saying “this feels like it’s gone zero to a hundred real quick for me” especially when some women struggle with the symptoms of endometriosis for YEARS. The medical gaslighting that ensues and leads to entire adulthoods of pain, can no longer be accepted. Because we know our own bodies, and surely for all the complex ways that women’s bodies have been “designed” I highly doubt they meant for a monthly ritual to be agony inducing. So to suggest that the excruciating pain a woman is experiencing is “just a bad period” makes me so fucking andry. 

So not only did I get a diagnosis that day in Gig Harbor, but I also got some potential rationale and reasoning. And knowing those things, being armed with those pieces of information, I was so much better placed to make my decision about surgery. Driving home from the appointment, it felt like a huge weight had already been lifted. Just being affirmed in what I felt was happening in my body, and someone saying “yep, here’s the reasons you feel the way you do” very nearly brought me to tears. It was relief. Relief that now I had a path forward, not just a whole lot of “your scans look fine”. Not just “we think but won’t know for sure until..” 

My lasting thoughts on the journey to diagnosis and a hopeful solution are that when we find ourselves looking to medical experts to inform, it is wholly unthinkable that some of those experts are not even specialised in a condition that affects so many women. Or that when we’re being sent for scans to find a specific thing (like endometrial lesions) that the technician isn’t specialised in finding those. Are we not then just shouting into the wind? Because their “your scans look fine” can’t be trusted. Or their “we think it was a ruptured cyst” isn’t quite telling the full story. And so it comes back to advocating for yourself; push, push and push some more until you find someone who is a true specialist, until the person who’s holding the ultrasound wand up inside you is familiar with scanning for endometriosis lesions and not just babies. They are very different things. And someone who could safely deliver your baby is not the same person who will expertly excise your endometriosis.