Endometriosis Wasn't The Whole Story...But Adenomyosis Is
By Dannielle Stewart, The Daisy Diaries
As QENDO’s Support Coordinator and Blog Coordinator, one of the privileges of my role is to bear witness to the many stories out there about endometriosis, adenomyosis and PCOS. These may be stories told to my support workers as they go about the business of helping and guiding those who call our support line for help, or written in emails sent to me asking for the referral list. Most often it’s the stories of those who bravely submit pieces for the blog, putting their story out there in the hopes that it may help others. I am profoundly humbled by these stories, by the women who tell them, by the mothers and fathers who tell stories of families brought to their knees, by the partners and friends that don’t know what to do but keep trying. Stories are how we express ourselves, how we learn and heal, and, yes, sometimes they are a blessing for others. Long before I was blog coordinator, or even a volunteer, I scoured the QENDO blog with racing heart, reading through the stories of others, trying to find the common threads that would assure me that I wasn’t crazy, that maybe I did have endometriosis. So now here’s mine, to say thank you to those who came before me, who reassured an me as an eighteen year old girl with their promises that she was not alone. I too promise that you are not, and may my story help you tell yours.
Hi, I’m Dannielle. I’ve been with QENDO since 2016. I’m a Brisbane native, but I currently live in Southampton, UK where I’m a general surgery/urology scrub nurse, and recovery nurse. Before this move I was a medical and surgical ward nurse, with a particular interest in cardiology. My current diagnoses are endometriosis, adenomyosis and postural orthostatic tachycardia syndrome (POTS).
My story isn’t full of doctors who didn’t believe me, of laparoscopies by people who didn’t know what they were looking for, of being told it was all in my head. Time after time I stumble into the offices of some of the best doctors anyone could imagine, all without research, all without thinking there is anything wrong with me. All the doubt came from me. That’s because I didn’t know any better. Because I, like so many of us, grew into womanhood believing that periods weren’t something we talked about, at least not seriously. As a teenager I had been told by a number of sources that periods brought with it cramps, and that those cramps could get “bad”. Bad is such a broad scale, a spectrum for any given person. One person’s bad is another person’s mild. And anyone who has endometriosis or adenomyosis knows that it’s so much more than just “bad cramps”.
When I was fifteen I would have given anything to not bleed every month, not to go through multiple packs of overnight pads during the day, not to stand up during assembly to find a kindly girl tapping my shoulder discreetly to tell me that I had bled on my skirt. It seemed such a long, painful and exhausting event, and I wanted it to stop. Despite increasingly awful pain and torrential bleeding, I held no ideas that any of this was not right or abnormal. Everyone got periods, didn’t they? How did other people deal with it? I assumed they were better at hiding it than me, that maybe I was weak and needed to toughen up, that maybe I was “just unlucky”. Once when I was in year eleven I found myself doubled over in such horrific pain that I hid outside an empty classroom and slid down onto the floor, crying because I had never been in so much pain in all my life. I thought I was safe hiding there, before class when no one was around, but my biology teacher had come upstairs early and he found me. I was mortified to have to tell him that I had my period and that’s why I was crying, what kind of hormonal lunatic would he take me for? But I saw something in his eyes that I’d never seen before when other people looked at me in pain. Why? It was just a period. I’d been in pain and feeling awful at school plenty of times but it was as though everyone else looked right through me. QENDO President Jessica Taylor famously says: if you know ten women, you know endo. It wasn’t until years later I realised why he looked at me like that, because he knew endo, and he could see it in me.
I knew about endo, I’d read a novel at fourteen where the main character is diagnosed with endometriosis. There’s some truly perfect descriptions of pain in that book, and author Ibi Kaslik should be applauded. For a split second I thought, could that be me? But the character in this story couldn’t get out of bed, she feels so weak that she can barely move and at one point she nearly bleeds to death. I couldn’t see myself in that role, and so I refused to believe my period pain was anything at all. I didn’t stay home sick, I didn’t cancel plans with friends, I didn’t have to lie on the bathroom floor in pain. It didn’t seem to matter that I wanted to do all those things, I just didn’t allow myself to, even when it was bad. Surely there was something defective about my coping skills. Even so I let it slip to my GP, wondering if she had any suggestions. I started the pill just before my seventeenth birthday and I swear it made my pain worse, but that was contrary to everything I knew, so I shrugged it off again and let my GP change the pill to a different combination of hormones. It seemed to work. I was so blown away by the improvement in my heavy bleeding that the pain became secondary.
For a while at least it only caused me grief for that one week each month, and in between I would forget how agonising it was, and convince myself that nothing was wrong. Then it stopped being for only a week. The pain I did feel got worse, I would hurt so badly I felt weak and dizzy. Still I didn’t rush back to my GP, I just accepted it as something else I had to deal with. The next time I was there, during my second year of university, to renew my script, I told her I was still in pain and I watched it dawn on her that it had been two years since I told her I had “bad period pain”. I watched her panic and write me the quickest referral to a gynaecologist I’ve ever seen. She gave me the name and told me I would be in good hands, an endometriosis surgeon who takes the approach that no one is too young for a diagnosis. I remember thinking that somehow I had conned this poor woman into thinking I was sick, when I wasn’t, and that a specialist would only laugh at me, or tell me to go home and take some paracetamol, which I had given up taking long ago because it didn’t do anything.
My specialist didn’t laugh.
My appointment was at 10:30, at 10:34 he emerged from his office and apologised profusely for running late. Already I was taken aback. Did he just apologise to me for being 4 minutes late? We chatted for a few minutes about what I was studying before getting into things, I was still worried that this whole thing was no big deal and that I was wasting his time. But as he started to ask me about my pain, those years condensed into one conversation, it started to dawn on me that it was a lot. The question that broke me was so seemingly benign, but it put things in perspective so well. He asked: “did you miss a lot of school because of your period?”, when I said no he didn’t seem satisfied and asked a follow up: “But did you want to?”. I thought about all the times in school where I had kept my mouth shut when I was in horrific pain, the run to the toilets to change yet another full pad, the classes at uni where I was worried I would pass out, all the times my Mum asked me if I wanted to stay home and I said no. I remember barely hearing myself say yes, because I thought I was about to cry. He promised me everything would be alright, that he would find me an answer for why all of this was happening, but that he was pretty sure just from this conversation that I had endometriosis, possibly adenomyosis too (dear God, what is that? I remember thinking). I entered that appointment thinking there was nothing wrong with me, I left with a surgical consent form, and the opinion that I had just met the nicest doctor in the whole world.
I didn’t end up having my laparoscopy until a year or so later, because I had no private health insurance and surgery doesn’t come cheap, A month or so after my twentieth birthday I had my surgery. I was petrified, pre-nursing days, but my entire surgical team were amazing. I decided that the kind of nurse I wanted to be was a theatre nurse, because these people were some of the most talented and kind I had ever met. I was so scared, even in the anaesthetic holding bay, that there nothing wrong, and that this was all a waste of everyone’s time and my parents’ money. My surgeon turned up, I had three balled up tissues in my hand and an entire box left for me by the anaesthetic nurse. He put on an expression of mock surprise and asked “who’s been upsetting you? I’ll get them, I will, point them out”. I spluttered with laughter through my tears, he held my hand and promised that there was always a reason for abnormal pain and bleeding, you just had to keep looking for the reason why. Surgery found that I indeed had endometriosis, an answer at last.
Was it over? Of course not, chronic illness is the story that keeps on going, no matter how many endings you try to write.
A few years later, a newly minted registered nurse in her first ward job, I started having pain again. Every week, sometimes every day for a week. It was even worse than high school, and it brought with it extreme nausea, dizziness and sometimes even fainting. I’d never gone to emergency for my pain before, ever, but that year my friends took me, by brute force if necessary, a few times. Worst of all was receiving handover one morning at work, barely five minutes into my shift, walking towards my room full of patients and having to stop and slide onto the floor of the corridor because I was in so much pain, so suddenly, I couldn’t move. Everything went blurry, my head was spinning, and I felt so guilty as all of my colleagues left their patients to take care of me, and the charge nurse wouldn’t hear any arguments that didn’t end in her sending me to emergency - a unit where I frequently worked as a float nurse. A familiar ED house officer’s look of surprise, then laughter, when he found me in a cubicle, still in my uniform, and blushing fiercely as I told him about my uterus is hard to forget.
When I went back to see my specialist he suggested another surgery, because either I had new endometriosis that needed excising, or I had adenomyosis - which he had suspected during my first surgery but was unable to confirm with MRI because I didn’t quite meet the diagnostic criteria. He looked at this tiny dot on my uterus that he had spotted during my first surgery, thinking it had been adeno, and pointed at it with exasperation. “That’s not supposed to be there,” he said. I had the second laparoscopy. The time between the appointment and surgery was hell, the pain only got worse, I kept feeling dizzy and nauseated from the cramping in my pelvis, all while completing my graduate year as a nurse and taking on my first year as QENDO Support Coordinator. Two days before surgery I ended up in emergency on a ketamine infusion, because two endone, two tramadol, ibuprofen and indomethicin had only moved my pain scale from 9/10 to 8/10. I had never felt pain like it. My nurse unit manager, ever supportive, had to endure talking to me while absolutely off my face on ketamine, trying to explain that I couldn’t come to work because the walls were melting.
There was no doubt about adeno this time around, during my lap I had no new endometriosis but I had severe adenomyosis. My uterus was bulky and soft, there was thickening where my Fallopian tubes left my uterus and the little white spot had grown into something much bigger where the adeno was growing out of the myometrium. I had doubted that there would be anything, just like the first time, and in spite of all my pain, so I was surprised at the severity of my adenomyosis after only a couple of years and with a Mirena already in situ. My endo had been mild, and while you can have mild endo but a lot of pain and vice versa, my symptoms didn’t quite fit, especially after an excision. Endometriosis wasn’t the whole story - but adenomyosis is.
You’d think after some evidence that there was in fact something wrong that doubt would disappear, that I’d trust myself, back myself, advocate for myself like I do my patients. Afraid not. I still feel, nine years and three diagnoses later, like I’m that same fifteen year old girl who just couldn’t cope with her period pain. It’s so hard to unlearn playing that part, of the good girl who doesn’t push, doesn’t get bossy or hostile, because we’re taught no one likes that. It’s so hard to unlearn letting doctors dismiss me, even though I have a diagnosis. It wasn’t until after I was diagnosed that doctors started doubting me, go figure. I still carry with me the internal fear, no matter how ridiculous, that people’s compassion runs out. That they tire of you being sick even though you so desperately want to be well. That even those you love the most will start to think that you’re just using it as an excuse, for whatever. I so desperately hate to use the phrase, “because of my endo/Adeno/POTS”, because I feel like “one of those people” that uses it as an excuse. “Those people” with their completely valid experiences and pain who so desperately want to be believed. “Those people” who would give anything to be normal, all the time. The simple fact of the matter is, there is no cure for endometriosis. The only cure for adenomyosis is a hysterectomy, and I’m not ready to do that at 24, I may never want to. These diseases are forever, and we cannot expect them not to impact on our lives. Diagnosis is not the same as being better, and surgery or good management is not the same as being cured. We need to let go of the expectation that we have to be better, to not bother people with the realities of our illness. Instead we can draw our focus to using our toolkit to improve our own quality of life, and educating others so that more people understand the reality of chronic illness. At the very least, the meaning of the word chronic. We need people who will advocate for us, because it can be so tiring when the job falls to us alone.
It is my hope that through the work we do with QENDO that people will know the words endometriosis and adenomyosis, because then those with symptoms can be diagnosed early, and the rest will know how to support a friend, a co-worker, a family member or a child. No one should have to feel alone and that’s why I do what I do for QENDO, why I’m a nurse, and why I will never stop talking about endometriosis and adenomyosis.
The story continues, it always will, but I am glad that for now, with the help of my support network, my family and my wonderful specialist (who is still nice enough to answer my emails from the UK!), I have managed to write a few hopeful and exciting chapters.
Team QENDO
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