Damn you, Bette Midler. I was out walking last weekend and was listening to the soundtrack of It’s a Sin (which, by the way, is hands down the best TV series I’ve ever watched. With the possible exception of Penny Dreadful – City of Angels). The soundtrack to It’s a Sin is absolutely packed with classic 80s tunes and many more besides – it’s eclectic and electric, reckless and shameless, joyful and doleful, all in equal measure. Every piece is a perfect accompaniment to the plot. And, what a plot! What actors! What a script! Did I mention that I like It’s a Sin?!
Anyway, where was I … oh yes. I’m out walking last weekend, and Bette starts singing Wind beneath my wings. Except, she doesn’t just sing it. That’s not just singing. It’s singing with the emotion dialled up to 100. Every note, every syllable is laden with more feeling than all the weddings, all the funerals, and all the memorial services you’ve ever been to, all put together. Listening to the lyrics, I suddenly thought of my mum, and that was it. I didn’t even make it to the end of the chorus without having to hit the skip button. It was either that or melt into a blubbing snot puddle by the llamas’ field. And I was sure as hell not going to lose my composure around those unfriendly, disdainful, woolly bullies. As I took a couple of moments to steady my breathing, Enola Gay started, my mood lifted, and I strolled nonchalantly on, head held high. Me vs the llamas: 1-0. Ha!
Fast forward to this weekend. This week, I’ve spoken with a doctor, an occupational health specialist, and a gynaecologist. I’ve worked five days and, for every one hour I’ve worked, I’ve slept two. I’ve eaten two suppers and one lunch – the rest of the time, I’ve felt either too tired or too nauseous to attempt a meal. I’ve also spent over two hundred pounds on one tooth (root canal treatment – ouch).
This week has also been my PMT week (which accounts for the almost-blubbing last weekend – that’s my excuse and I’m sticking with it). It’s now just over one year since I was laparoscopically diagnosed with endometriosis. Last year, just before the surgery, the gynaecologist offered to swap out my copper coil (y’know, just while she was poking around in that whole area) for a hormonal coil, called the Mirena, which, for some patients, can control endometriosis symptoms, with minimal side effects. It was a good idea, to be fair (y’know, kinda like getting new wipers fitted when your windscreen is replaced) – but I’ve responded poorly to hormonal contraceptives in the past; so, I turned her offer down.
Fast forward to this year. A few months back, I started to notice the familiar, unwelcome, cyclical symptoms returning. First, I hoped it was a blip. It wasn’t. Then, I hoped I could control it with painkillers and sleep. I couldn’t. Finally, I called my GP, who referred me back to gynaecology.
I’m glad I did, because the wait was a couple of months, and the endo pain has come back big time this month. You know that root canal treatment I mentioned a minute ago? Well, with everything that’s been happening this week, I’ve realised that the root canal experience does provide me with a useful basis for comparison. Here goes.
You know that moment when the dentist is injecting your gum and the pain level keeps edging up as the needle sinks deeper and deeper, until your nails are embedded in the arms of the dentist’s chair? That. If you don’t know endo pain, then just imagine that injection in your tender, sore gum. Imagine how the long, slow, acute stab of the needle keeps intensifying, elongating down through your jaw and into your neck. Got it? OK. Now, imagine that same pain, appearing in a random flash, beginning in the soft tissues of your abdomen and slicing down through your pelvis, down into your thigh, where it somehow becomes connected to an imaginary rubber band that squeezes and stretches the needle down your inside leg, pulsing into your foot and finally exiting through your toes, stabbing them several times on the way out for good measure. Still with me? Good. Now, imagine that long, acute, abdomen-to-thigh needle, attached to its stretchy, squeezy, rubber band, randomly flashing into existence, not just once, but twenty, fifty, eighty, whoknowshowmany times per day. Finally, just for fun, imagine you’re in a team meeting when it happens, or speaking with a client on the phone, or trying to relax after a busy day.
The palms of my hands are going to develop scarring from my fingernails.
This time of the month brings with it other challenges to keep me entertained – loose bowels, urinary frequency, lower back pain, a slight limp in my left leg, headaches, nausea and fatigue. Most of these are bearable and/or controllable to some degree; the fatigue, however, is a major problem for me. This week, I’ve struggled to climb the stairs, or do a full day’s work, or do anything really, besides sleep and work.
The problem with all of these symptoms is that they are common, not just to endo sufferers (I mean warriors, sorry!), but also to people battling other conditions. So; even when you do end up seeing a GP who listens, is circumspect, and has the right knowledge, you embark on a journey involving numerous tests and treatments to rule out other possible causes, before the risky and costly option of exploratory surgery is considered.
Bizarre experiences I’ve had as a patient have included: drinking so much water I wanted to explode (required for pelvic ultrasound), seeing the inside of my own bladder on a TV screen (cystoscopy), apologising to a physiotherapist for being fit (pointless referral by GP), getting high at work after taking a double dose of muscle relaxant (on GP’s instructions), attending A&E with acute pain and being asked by the young doctor who arrived to treat me if I knew where the patient had gone (you get so used to acute pain that you don’t express it, because that just uses up valuable energy) and finally (a bit disturbing), being prescribed a box of 28 opiates for pain and, on opening the box, reading the instruction leaflet that tells you not to take more than 3 doses due to the high risks associated with opiates.
I don’t want to get back to the point I was at in 2019, when my symptoms prevented me from working (or doing very much at all). So, this week, when I spoke with the gynaecologist, I reluctantly agreed to have the Mirena coil fitted, sheepishly muttering an apology for not taking up her offer in the first place.
Here I am, then: hormones it is. As an endo warrior, you are your own guinea pig. There are no ready-made solutions, as the condition presents so variably and is still so poorly understood. The gynaecologist told me that I have to ‘stick with’ the Mirena for six months. Hopefully, it will control my symptoms, without any problematic side effects. If it doesn’t control my symptoms, the next step is an injection of chemicals that induce menopause – which, based on what I’ve heard from fellow warriors, I’m even less keen on. But, the way I’ve been feeling recently, I’m getting to the stage where I would take any injection over the pain and fatigue.
Time for a walk/limp in the sunshine, with some music. I’ll avoid the llamas today, just in case Bette Midler comes back on.
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