Just Make It End(o)

Did I expect 2025, my “year of health” to lead me to the States for surgery so that while my 40th birthday was spent running a half marathon, my 41st will be spent in recovery? That would be a no. 

The slow, progressive changes in my monthly cycle health were noticeable from 2022, and at the time I assumed maybe it was all part of “getting older”… But those symptoms really came to a head in January 2024, when I thought my insides were coming out during an extremely “abnormal period”. After that nothing really went back to normal even if on paper my next period looked “normal” – I hate even typing that word. At the ultrasound my family doctor ordered in January, they discovered a cyst on my right ovary. When we got that result back, my doctor told me they typically don’t worry about anything under 5cm – but like, isn’t that kinda big?! Am I the only one that doesn’t want an, assumed, blood-filled 4cm cyst just hanging out on my ovary? Even if it is only 4cm! “It’ll probably take care of itself, or I could refer you to a gynaecologist if you’d like?” she said. 

First lesson – go to the specialist. Always. Never feel like you’re being over the top or extra. It’s your health. And quite frankly I believe women should see gynaecologists at least annually. But let’s not get into that rant this early…

I was referred to a gynaecologist who I saw at the end of April, it felt like an age to wait.. By the time my appointment crawled around my life was already significantly impacted. What had been increasingly bad period pains over the last few years were now severe cramps every month, both when I had my period and when I was ovulating. So for two out of four weeks, I was experiencing pain I’d never really felt before, as well as all the other symptoms that had seemingly come out of nowhere but never necessarily linked altogether. Exhaustion that reminded me of when I had chronic fatigue, lower back pain that made it almost impossible for me to even put socks on some days, pain anytime I went to the bathroom (for either), stabbing pains in my uterus and ovaries randomly outwith my period and ovulation days, brain fog that had me googling “early onset dementia symptoms” and weight gain – but let’s be honest that last one is hardly surprising considering I spent half the month unable to leave the sofa with sleep so disturbed by pain that the already existing exhaustion was exacerbated.

When I saw the gynaecologist, she had the result of a second ultrasound I’d had done which now showed a similar sized cyst to the first but on my left ovary. Her concern with both the original cyst which was no longer there – “oh that pain in January was likely it bursting, didn’t anyone tell you that?” no – and the new cyst was as lacking as my own family doctor’s – that because of their size they weren’t really a concern. However, her thorough review of my other symptoms was where she started to look interested. And from a manual internal exam she conducted, I heard the word “endometriosis” for the first time on this journey. 

Here’s where my disclaimer comes in – I am nowhere near a doctor, I am nowhere near an expert on any of this, although Google has come in pretty handy, and anything I’m “explaining” here is in the way which I understand it, and not in the way that it is medically correct. Though I am doing my best to ensure I’m also not fake newsing it over here. 

Endometriosis is basically tissue that is similar to the inner lining of the uterus that grows outside the uterus. In my mind it’s just like gnarled up scar tissue just hanging out in the ether of my body. Cool. I also found out it can actually build up amongst organs to the point that it connects organs to other organs that biologically they shouldn’t be, like your ovaries, bladder, rectum etc. Cool cool.

After suggesting I may have endometriosis, my gynaecologist’s first question was what my plans for child bearing were. Awesome, love that question. Especially relatively early into a new relationship, when my 40th birthday was staring me down, and when I guessed she was asking because the condition just mentioned was going to maybe impact that…? Like I said, cool cool.

Unsurprisingly to no one – at least if you’re a woman who went on birth control in your teens because… periods – birth control pills were suggested to me as a treatment solution. Because estrogen is the breeding ground for the growth of endometriosis and birth control reduces estrogen, it is often (read pretty much always first) suggested as a solution to slow down the growth of endometrial-like tissue. It wouldn’t remove what was already there however. Nor did it take into account my dislike for putting artificial hormones into my body, having come off birth control in my very early 30’s. 

I politely said “thanks but no thanks” to the enquiry and asked what else we could do. She mentioned surgery to remove the existing endometriosis but that any surgery is high risk and, again, I should figure out my kid situation – my words, not hers, though it felt that blunt. I said what I’d really like is a confirmed diagnosis, hers was suspected at best. She told me endometriosis rarely shows up in ultrasounds or even MRIs, that often it’s only through laparoscopy, the same surgical method used to remove the tissue, that the diagnosis can often be confirmed. So a lot of women go in for surgery with only suspected diagnoses. Surgery?! When you’re not totally sure?!

I’m one of those “I need all the data” people and given I went in thinking we were going to discuss removing some cysts, hearing instead that I may have a disease that wouldn’t just go away on its own was hard to get my head around. While I knew my initial misgivings about the recommended treatments were unlikely to change, I agreed I would think about both my fertility plans and what treatments I would consider. My mind was reeling as I left my appointment to think about all I’d been told.  

Reading online after my appointment the stories of women who suffer from this is harrowing. Symptoms from first periods, or early 20’s, mis-diagnoses, “just bad periods” rhetoric that has sufferers in pain for years. I was unsure of how I went from zero to a hundred so quick with this. Or how I’d really never heard of, or certainly knew nothing about, a disease which affects 1 in 10 women (10%!!!!!!!!!). Affected women can suffer with these symptoms for their entire adult lives until menopause. That was horrifying to find out. And all I could think was how grateful I was to have only started feeling the worst of the symptoms in the last few months. 

In amongst all of this happening, I was managing a growing team and growing pressure at work, I was still finding my feet sharing my life and space with a new partner, and I was training for two half marathons – one at the beginning of May to complete my “a half marathon every year of my 40’s” and one the day after my 40th birthday on May 26th, with my Mum, in Edinburgh. My want to complete a checklist drove me so hard to that early May race, despite a huge lack of proper training and trying to manage increasing pain but I was most nervous about getting injured and not being able to run that second race, that was going to be a very special 21.1km, my first with my Mum and at home. Of course that first race day fell right in the middle of my period so I ran in the pissing rain of Vancouver unsure whether the uterine hemorrhaging or the leg muscle cramps might kill me first. 

Summer 2024 included an incredible trip to Europe for my birthday half marathon, two weeks in Switzerland, and a work event in Manchester – but all of which was marred by increasing pain, increasing fatigue and a new super fun symptom of having an extreme urgency to go to the bathroom, out of nowhere and far more frequently than the volume of water I was drinking should have attributed to. 

Before that trip, I’d had another ultrasound done. At that one I specifically said to the technician “does it say in the notes that you’re looking for endometriosis?” and she said, without missing a beat, “no, and it doesn’t matter”. Now again, I’m no medical expert but wouldn’t it be helpful to know what the fuck they were looking for before they stuck an ultrasound probe up inside you?! I got the call with the results of that scan  while riding a train in Switzerland and – to NO ONE’S SURPRISE – was told it showed no cysts and, in fact, nothing at all. 

I knew the lack of cysts on that latest imaging meant nothing, so in search of answers I chose to pay for a private MRI. My gynaecologist told me it would take 4 to 6 months to get one through our healthcare system in BC. She also suggested paying for one could be a waste of money because it may not show anything. But she also didn’t suggest anything else… So $1000 later, I got my MRI in October. 

Just as my gynae told me, it showed nothing. I don’t want to suggest she sounded somewhat smug about it, like “I told you so” but it somehow felt like that. And so again, with her I was back at stalemate – what do you want to do about children? Birth control would be your best option. I told her, as I wandered around HomeSense looking at furniture for the new home I was now sharing with my partner. I told her I wanted to explore surgery, that if it was the only way to get a true diagnosis then I wanted to do it. She reluctantly agreed to put me on the waitlist, noting it would likely be 9 to 12 months at least for an appointment. “That’s fine” I told her “just do it.” She was more forthcoming with her suggestion to also refer me to a fertility clinic so that I could get a read on my fertility status. It was clear where her priorities and concerts lay. 

Feeling like I was at a total impasse because all I could do was wait, ended up being the straw that broke the mental health battle’s back. I was feeling so unlike myself, so out of my own body and so out of control of my body. My social and active life – previously two core facets of how I spent my time – had almost entirely disappeared. With no energy to workout, and some days barely enough to even walk my dog, and pain which had by then increased from period and ovulation days to probably 25 out of 28 days of every cycle. And the chances that those 3 pain free days coincided with my intended social plans, a friend’s birthday or a preferred date night? Very, very low. I sat through my fair share of dinners or coffees where I was gripping the chair, or my partner’s hand, hard enough to cut off blood supply just to battle the pain. 

I felt like a stranger in my own life. I barely saw friends. My body wasn’t recognisable to me – either in how it felt, or how it looked. And I knew, despite my boss being exceptionally supportive, that I was nowhere near as engaged at work as I should have been. I felt like I was failing in every aspect of my life. And I was depressed. I was depressed at not knowing for sure what was going on, and still having no idea of when I may find out for certain, or when I’d be able to get it fixed. 

After deciding to cancel a planned Christmas trip with my partner and his family to Scotland and Dubai, he and I instead spent a couple of months in the California sunshine to close out the year in the hope the vitamin D may help my mental and/or physical health. We returned to BC in early January and I hoped that somehow, the sunshine may have seeped into the fibres of my being and 2025 would be a year full of good health. But a shoulder injury from skiing at the end of January and the very quick realisation that nothing was different, led me to looking into private options. 

In a process that took me two months to figure out, the long and short of it was that one of the best places in Canada to get the surgery was right in Vancouver – great news – but because that clinic also served provincial Medical Services Plan patients (which was what was going to take me 9-12 months to be seen) they couldn’t see me privately – what. They could have if I lived in another province, but because I lived in BC and was covered under BC MSP, I couldn’t go there privately. I had to ask the woman on the phone to repeat herself twice because I was sure I was misunderstanding. But I wasn’t. 

And so that’s how we found ourselves travelling down to Gig Harbor, an hour south west of Seattle, for an appointment with an endo specialist that cost me $700. I had called them at the beginning of March and had my appointment before the month was out. And within five minutes of having yet another ultrasound probe inserted, I was told that without a doubt there was endometriosis. And not only told, but showed where my right ovary was attached to my uterus, and not in the normal fallopian tube way, in the “there’s something that shouldn’t be there sticking them together” way. They also showed me where there was endometrial tissue in the uterine lining. So not only did I have endometriosis, I also had adenomyosis – when the tissue is found in the muscular wall lining. It was there in visual black and white. 

The doctor explained the surgery to remove the endometriosis is fairly straightforward, but treating the adenomyosis is a little more difficult. To remove it fully they need to remove the wall lining, which is basically removing the uterus, a hysterectomy. The other alternative explained to me was a presacral neurectomy, where they cut the pain receptors from my uterus so while the endometrial tissue is still left in the wall lining, the pain from it should be reduced. And that could all be mine for the princely sum of $35,000. 

I’ve never had any type of surgery, the closest I’ve come was having a mole removed (which I passed out halfway through) and having a tooth removed (which I took 4 Ativan for and slept through the whole thing to minimise trauma). I guess my egg freezing was in a similar realm, and my biggest concern with that wasn’t the 9 inch needle going right up my you know what, it was having to get the IV to give me the fentanyl before the procedure, knowing that if I passed out when the IV was put in – as is my 100% record for that – then they wouldn’t be able to do the extraction and I’d lose the whole cycle. So to say I’m nervous about the surgery is an understatement.

Our health and quality of life though are things that are invaluable. I’ve had spells when I haven’t been in the best health but they’ve been relatively short, or injuries that had me sidelined from workouts for longer than I’d have liked but it was still a matter of weeks or maybe a few months. To now be over a year of feeling like my body is out of control and like I don’t really know who I am or recognise my life, my activity or energy levels, my want to be social, my want to even get dressed or get out of bed, my need for a solution, to just make it end, at any cost was clear. There is so much tied up in our health that it’s easy to take for granted when we don’t have it challenged and only when it’s MIA can it remind us how important those things are, and all the things we want to do if, or when, we get back to full health.

Having said that, my struggle has been much more short lived than a lot of women living with endometriosis or adenomyosis. So my gratitude for a relatively fast diagnosis and an incredibly caring and expert team going into surgery is unlimited. As well as the privilege to be able to have access to specialists, the affordability to go the private route, and to travel for surgery. 

My partner is a very logical, rational, logistical man, as well as exceptionally caring. So while my anxiety is pretty sky high asI sit editing this the night before surgery, I’m going to borrow some of his stoicism and trust that “you’ll be fine”, and know that I’ll also be exceptionally well cared for post-op.

So when I’m fine and enjoying that post-op care, I’ll share more of the story, including why some of my past choices may have led me here.