Words by Kate Ellis // illustrations by Chloe
As part of my job, I’m touring a social innovation research lab. The lead researcher is incredible, and her work is so cool. Unfortunately, it is day two of my period and I’m struggling not to die.
She goes into a story about how some of the research they’re doing has directly impacted housing policy, however; I’m balancing my effort listening and trying to hold my body in such a way that I don’t let out a giant clot. I’ve got a super tampon in, and am wearing leak-proof period underwear, but I’m wondering why I chose to wear the beige floral skirt today. The lead scientist says we should all get a picture, to commemorate the day. She gestures towards the couch. Of course it is white. Fuck.
The important context here is that I have adenomyosis. Adenomyosis is characterised by endometrial tissue growing into the uterine muscle wall, leading to extremely heavy periods and catastrophic pelvic pain. It is suspected that around 8% of women have adenomyosis, but an overwhelming lack of screening, diagnostic consistency, and available data make this a “best guess”.
I like to think of adenomyosis as endometriosis’ ugly little sister. Lots of pain, lots of blood, endometrial tissue where it shouldn’t be, but none of the mainstream conversation. For me, adenomyosis started to develop after being pregnant. I remember telling my doc that I had not had a pain free day since before my pregnancy. I was bleeding so much I was chronically anemic. I was so exhausted that getting out of bed felt like a herculean effort. But everyone’s bodies are weird after having a baby, right? So this is… normal???
I continued to have symptoms, long after what we might call the “post-partum period.” I went for ultrasound after ultrasound, and yes, I am INTIMATELY familiar with the transvaginal wand. I went on every type of hormonal birth control under the sun. For 5+ years, it was a cycle of “normal” ultrasounds, and birth control trials that worked for about 3 months before symptoms returned. For the record, when I eventually did get a diagnosis, my specialist revealed to me that my symptoms, imaging, and risk profile pointed to a “textbook” case. Enlarged uterus with uneven uterine wall texture on ultrasound. Bleeding out clots the size of my palm. Anemic. Constant pelvic pain. Prior uterine surgery.
Once I was in front of a woman’s health doc, I was put on a medication called dienogest. Dienogest was originally developed for endometriosis, but has been shown to be beneficial in the treatment of adenomyosis as well. In Canada, the brand name version Visanne came onto the market in 2011, and has been available in Australia since late 2024.
For me, the combination of dienogest and pelvic physio has been a game changer. Anyone considering dienogest should know the first few months are a bit of a rollercoaster. Dienogest is progesterone, the same hormone that spikes right before your period. My experience felt like the physical symptoms of PMS for 3 months straight. My breasts were enormous and sore, I was very bloated, with pimples all over. A very cute look indeed. BUT… I wasn’t bleeding. In fact, I didn’t have any bleeding for about 3 months, and the bleeding I did have was one of those cute little spotting periods I only hear about from wellness influencers. After 3 months, my symptoms leveled out, and my pain just… ebbed. It was around 4 months before my next round of spotting. Then 7 months. Now, I only get the occasional flare up.
I’m so grateful that I was able to find something that ended the hellscape of my adeno without needing to have surgery. But I’m also frustrated… why had it taken so long for me to learn about this option? What could the last 5 years of my life have looked like if I had access sooner? I think back to the utter, bone deep exhaustion that went along with my condition. Could I have been a better Mom? Could I have advanced further in my career? It’s frustrating that I’ll never know, but I’m certainly not about to gatekeep an option that isn’t surgery, and IUD, or “try getting pregnant.” I won’t ever know what “could have been” in those 5+ years leading up to my diagnosis, but maybe, if you are a fellow adeno queen, you won’t have to wonder 5 years from now.
