Wednesday, 8 July 2026

An essay about my uterus


This will be the last time I am folding these up. Soft, clean and dry. It was always a nicer part of the monthly ordeal. A sense of relief, that I made it through and there would be a few weeks of reprieve. 


I will be getting the bloody, bleeding organ, my uterus, cut out sometime in the next few months. After years of being pretty large, but stable and not causing any major symptoms, the fact that the fibroid tumours have doubled in size since a year ago means there's no other option other than a full abdominal hysterectomy. And although surgery right in my guts is a bit terrifying, it can't come soon enough. I've been increasingly uncomfortable since March, especially when lying down. I have to get up regularly to walk around to ease the pain, so my sleep has been rubbish. Plus there's a 1% risk of cancer that I'd like to be clear of. 


I bought my first reusable cloth pad from a health food store when I was 22. I still have it, although it's not my favourite. It has a red towel that you need to fold up and reassemble, which can be tricky to achieve without lumpiness. But it dries quicker on the line than some of the newer, thicker ones. As a teenager, I was so impossibly embarrassed of my period that I couldn't even say the word, let alone imagine hanging the evidence on the line for anyone to see. But in my first sharehouse, my housemate told of hanging her pads up to dry around her bed in youth hostels while travelling. As a young environmentalist, I was inspired to walk the talk. 


I wonder if I should be more sad about my hysterectomy. A friend facing the same predicament is sad, even though she's closer to the average age of menopause than I. Neither of our wombs got used for their purposes. We didn't experience the miracle, joy or pain, of growing another human inside of us. But me/cfs has already made me come to terms with not having had a baby, so this is not a sudden shock. Sometimes I will feel sad about my childlessness, and the type of family and experiences I will never have. And sometimes, like when I see your kids being very loud and hectic, I will be relieved. Definitely in the context of me/cfs, I'm grateful I don't have small people to look after. 


Period undies didn't come on the market until much later in my menstruating life. I think they are great, particularly the huge overnight ones, as lying down means blood can leak in many directions rather than straight down into a pad. I experienced many stained bedsheets and pyjama pants before I got a pair, including one morning when I didn't realise I had a massive bloodstain on my pants until after I had spent a significant amount of time scurrying up and down the street in the wind, rescuing rubbish from a blown over wheelie bin. But if you're not a light bleeder, pads are easier to change than a whole pair of undies. The undies are also usually black and don't give the visual feedback about when they've reached capacity, until things just start feeling a bit, well..….wet. I used a cup when bushwalking and travelling, as I wasn't as brave as my first housemate, and no inconvenient laundry was required. But I always hated the ins and outs (the suction(!), the potential mess if you accidentally spilled it, and the unsuitability of public bathrooms for the task - let alone behind random bushes when hiking), and there was also no visual feedback until you felt the trickle of the overflow. 


It would have been a lot easier to exist as a person with a uterus and ovaries if there was greater societal understanding and acceptance of periods. And also less stereotyping of women as the weaker, less capable sex. Things have improved since the 1990s. A lot of people have raged against the patriarchy more fiercely and bravely than I, and how it has made us feel so much shame for a natural biological function that, unlike growing a beard and getting a deep voice, is essential for the continued existence of the human race. My mother once admonished me as I had left a used pad (wrapped in newspaper) in the family bathroom. What if my brother or father saw? I remember a fellow student at my all-girls school nastily saying how gross it was that she had glimpsed someone else's pad and the blood on it. (We were also supposed to wear very short netball skirts on sport days. Like, wtf?). We weren't taught to support each other in our shared trials as women, but to police each other. Back when I worked, I wouldn't even admit to my female colleagues I was struggling with pain as I didn't want to seem weak. Let alone to men, who may have been disgusted, or at least made very awkward. And it's still pretty weird to share what's going on in your underpants-region with someone you're not close to, no matter how much you're affected by it. 


I sometimes wonder if not slowing down on the days when I was in the worst pain contributed to me developing me/cfs. During my last season as a track ranger, the first day of my period consistently coincided with the first and biggest day of my shift. There didn't seem to be a way around this. So I just chugged the maximum dose of ibuprofen, tried not to vomit, and pushed through the pain that the drugs could never fully dull. At the time I wasn't, but for most of my menstruating life I took the pill. This made bleeding predictable, and significantly reduced my pain from perhaps a 7-8/10 to a 2-3. Unlike others, I was lucky the pill didn't cause me any mental health issues, but I couldn't take it continuously and I still bled most months. Taking the pill and even taking painkillers is something I have sometimes felt judged for. But it is a hollow judgement from anyone who hasn't tried living in this rigid, capitalist world where you have to earn money to eat and keep a roof over your head, while a ferocious beast rages in your insides. The drugs were a cheap and reliable method of suppressing symptoms that otherwise would've kept me suffering in bed for multiple days every month. My experiments with alternative health were expensive and ineffective. 


From what I've said above, it would seem like a no-brainer that I won't miss my period. The pain, the mess, the logistics. But, also, I'm not 100% unequivocal about it. The sensitivity to the world I felt during bleeding was kind of sweet. On days that I could rest, doing gentle yoga felt amazing, like my whole body singing out "yes, pay attention to me!". And it was a unique relationship with pain, as although it was debilitating, it held no fear and I knew it would pass. It was certainly a ride, and an often exhausting one, not to mention the irrational mood swings when not on the pill, and ovulation pain being an extra bonus that no one warned me about. Every month, for 30 to 40 years, is a lot. If I could redesign evolution I would reduce women's cycles to 4 times a year. And if I could redesign society I'd eliminate the medical negligence that has dismissed our pain, denied access to care, and dragged its heels on research needed for seriously debilitating conditions. I would also allow women to take all the rest, and dare I say it, "sacred time", they need during their bleeding. 


I know some hippies like to mark a girl's first period with some sort of ritual or celebration. My awkward teenage self would have been mortified at any such attention on me, my changing body and especially the events in my genital area. Unlike in the Judy Blume novels, my period was not welcome. I didn't want to be a woman. Periods just confirmed to me that it was a massive dud deal compared to being a boy, on top of the silly and unfair gender roles imposed upon us. However I would've liked to have felt less shame. Perhaps an acknowledgement of the grit and toughness needed to endure menstrual cycles would have been good. And earlier access to the knowledge that toughness and pushing through isn't always the wise choice. Often that is softness, surrender, care and compassion. 


It's a fairly major surgery I'm having, as the fibroids are too big for the keyhole option. There's a few unknowns. Whether I get to keep my ovaries or not, and therefore if I'll go into immediate menopause. Or if I keep my ovaries, what will cycles, and also perimenopause, be like without the main player? Will they find evidence of endometriosis that could explain why my periods have been so painful ever since I was a teenager? How much will my cfs prolong or complicate the recovery, and how big a crash might it cause? Might it improve my fatigue to be rid of such a problematic organ? (Wishful thinking probably). Having a major operation like this is scary, but we also live in a blessed age of anaesthetics and sterile surgical implements. I'm trying not to think too much about it, trust the surgeons, and hope it can be over with as soon as possible. Often the waiting and anticipation can be the worst. 


As I fold the cloth pads. I calculate I've saved at least 5000 non-biodegradable items since 2005, which is both a lot, and a drop in the ocean of plastic waste. Can I donate them to someone post ute-boot, or is that just way too extreme-hippy of me? They're clean, they're still good, and many women around the world don't have access to such quality sanitation items and can't go to work or school when bleeding. (If all else fails, they can mostly be composted, apart from the press studs. Or I might keep them in case of future incontinence - next time I get a coughing flu, for example).


So, goodbye to this little folding-up ritual, goodbye extra laundry and goodbye part of my body and my life for the last 30 years. A hidden part. One that I was encouraged to do my darndest to conceal from the get go. And unlike breasts, the other xx chromosome phenotype, a part that no one will see is gone. A non-essential organ in an individual. A part that held the potential of another human, but instead just gave me 30 years of cramps, blood, nausea, stains, embarrassment, humility, sensitivity, surrender, endurance and relief. The ceremony should perhaps be at this ending, not the awkward beginning. Should I ask to bring it home from the hospital so I can bury it under my lemon tree? Or perhaps this essay will be enough to commemorate the removal of my womb, and the ending of the period of periods. 





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Ps. I am aware I have not used the most trans inclusive language here. Perhaps I'm being vain about my writing, with "woman" being less clunky than "person born with ovaries" or some other iteration. But also, until the last few years, when there began to be much more visibility of others with different gender identities, the gender binary formed the predominance of my framing of the world. Despite being quite pissed off at being born a girl when I was a tween, I've been content as a cis woman for most of my life, especially after I realised it was okay to be a daggy bushwalking lady who doesn't shave and has zero interest in fashion or make up. So, it's not really my story. However, acknowledgements to those that have and do lead a more challenging life outside of the binary. 


Monday, 16 March 2026

10 year fatigue-i-versary

And so March 2026, the month of my ten year fatigue-i-versary, has started with a crash. A big one. The worst and longest reduction in ability for at least 3 years, that is purely coinciding with CFS symptoms, not those of an additional virus. (For me this is sore, tight glands and generally feeling shit, but no snot). And no, I don't know what caused it. When you have ME/CFS you have to come to terms with not knowing. Theories can breed like maggots, but honestly, I don't know what happened 10 years ago, and I don't know what happened just now. I feel like a bird who flew into a glass window. Except this time I wasn't anywhere near flying. Just plodding, pacing, constantly checking in on my internal battery levels, and having compulsory daily naps even if I didn't feel like I needed to. So, it was more like being dumped by a wave. An invisible breaker, with the only warning sign being a crest of feeling unusually well just before the crash. (Apparently this is a common cfs thing. But I had forgotten to be wary, and wishful thinking had me hoping the small surge was a step upwards in ability, not a warning sign). 


Recent crash in data, showing about 50% loss in ability for last 2 weeks +. Don't think I've had a purely cfs-related crash this bad since 2020. 


I could blame myself for being an idiot and "doing too much". I am still prone to getting carried away with what I want to do, rather than really listening to my body. I did have a big week prior to the crash, camping in my little van at Fortescue Bay and trying to get things done in the garden during harvest season. (As of this year I am the sole owner of my house, so the garden is feeling rather overwhelming). But it wasn't doing anything too unusual compared to the last few years. I had been able to do quite a lot. I don't think I was ever at more than 10% of my pre-cfs ability, but it was amazing compared to being house or bedbound. I was getting away with 2-3 kilometre walks (if they were flat, slow and not every day). Going to Cradle Mountain and hosting wwoofers at my house last year were two huge things I couldn't have dreamed of previously. They stretched my limits and exhausted me, but I didn't crash.  I am always probing the edges of my ability, like walking alongside a bog, blindfolded with a stick. Where is the edge? What happens if I push just a little bit further? I try to find the balance between living my life within the fullness of my limited capacity, and mostly erring on the side of caution. And I seemed to have been successful, up to now, in levelling out the push crash cycle. My recent crashes were only a day or two long, rather than weeks, or months or years. 



               Snake hill to Ronny Creek, a walk of a few kilometres I was able to do at Cradle mountain


So having the shackles tightened again, and it lasting more than a few days, has been a rude reminder of how miserable me/cfs can be. Dispiriting, frustrating and scary. I have felt tempted to call the last two weeks "a write off", because I had to cancel my plans and I can't make any new ones until I feel better. I didn't get things done around the house or garden that I wanted to. But I don't know how long this crash will last, and I don't want to call any of my disabled life a "write-off", nor that of anyone less able than me. If there was a magical button to end this disease, I'd press it without a moment's hesitation. But my life is still worthwhile. 



Illustration from 2017 blog post


The last 10 years have been very different than I expected. I won't ever know all that I've missed out on, had I not got sick. All the 'might have beens', both good, bad and their own form of challenging. I don't know what I would have been doing for a job. Maybe I would've had kids. Maybe I wouldn't. At 43, that window has pretty much passed me by. I've been single the whole time. I've been forced to be less social than I want to be. But I've often appreciated the slowness. I've done a lot more meditation and yoga than I would have otherwise. I had a very nice time with my magnifying glass looking at leaf litter by a creek the other day. It has been an opportunity for deepening. And I've also done a lot more mindless scrolling and watching easy TV. I've missed exercise the most. And bushwalking for days, away in the mud, sweat and wonder, far from addictive screens and city noise. I think it's inarguably, a diminished life. But it's still worth living. It's given me more humility and compassion. I take much less for granted these days. I have so much gratitude for a safe place to be sick. And that I've been believed and supported by friends, family and the online cfs community. 



                      Being wheelchaired around fossil cliffs circuit on Maria Island by friends last year 



I haven't tried any "cures" for a while. I tried nicotine patches last year. A friend of a friend was cured by them apparently. Improbable, I thought, but cheap, easy and worth a shot. They made me feel quite awful. The low fodmap diet actually did help my IBS, but not my CFS. Another friend of a friend enthusiastically promoted another "mind-body solution". I read the book from the library with all the miraculous testimonials of  recovery. I gave it a go for 2 weeks. Nothing happened. I hereby declare myself a failure at curing myself from cfs with the power of my mind. (In other words, I don't think stress, trauma and mental health are a big a part of the puzzle for me, as they are for some people). However, if a scientifically proven cure with a high success rate is found, I'm sure I'll hear about it. 


                                                                                From 2017 blog post 



So. Here I am. In a bit of a hole within a hole. I don't have any realistic hopes for a full recovery in my lifetime, but I do hope I can get better from where I am right now. I don't think I have anything new to say that I haven't written a post about already, with more nuance and detail than in a short-ish 10-year summary*. I'm not sure how long this particular crash will last. I'm back to living one day at a time. Torn between having to rest and wanting to do things. No swims or camping trips this March as I don't feel well enough. Staring at a screen. Feeling excruciatingly vulnerable to global and local events beyond my control. Wanting to be free. Knowing how incredibly lucky I've been. Looking after myself as best I can. 


* In 2020 I wrote about losing ground, and in 2021 I wrote a 5 year fatigiversary post. I'm still quite pleased with both of the essays, and not much has changed. 



Eek