Welcome to March 2025. It’s not the same as any other March: it is a new month, a new day, a new moment in the forward-spinning journey of our lives. But it is still Endometriosis Action Month.
I’ve been blogging here for five years, and loving it. My starting point for this blog was my endometriosis (aka endo) diagnosis – I wasn’t loving that so much. But I was feeling all kinds of emotions because of it, and wanted to channel them in the most positive way I could.
In that time, I’ve travelled from one end of my forties to the other. And, together with eight billion other people, I’ve travelled from the start of the twenties to the halfway point. What a time of upheaval it has been.
For me, endo-wise, it has been just over two years since I underwent a total hysterectomy with bilateral salpingectomy and oophorectomy (translation*: everything out). Early post-menopause has taken a great deal of adjustment; however, the control and predictability of HRT has given me two years of glorious relief from all but the mildest of my symptoms. Just to be clear though: hysterectomy does not cure endometriosis**. For me, it was a calculated risk and a drastic step that paid invaluable dividends. I fervently hope that my luck continues to hold.
More recently, I experienced the drawn-out, agonising loss of my mother. My focus strayed away from endo, and my blogging slowed almost to a halt.
Now, I am trying to stand up again. I’m thinking I might stick with a broader focus from now on; so I’ve refreshed the look of my blog a little and, in a slightly-too-Muskish move, changed my site title to Œ.
Be that as it may: there are still eighty million people in the world with endometriosis and, as I mentioned at the start of today’s blog, March is Endometriosis Action Month. Today, therefore, I ‘d like to keep talking about endo and tell you about an experience that made me reflect on a very unpleasant stereotype, often thrust upon endo warriors: that of the drug seeker.
One early morning, several years ago, endo was causing me such extreme pain that I woke myself up by screaming in my sleep. Feeling the urge to vomit, but determined not to do it on the bed or the carpet, I rolled on to the floor and dragged myself by my elbows along the floor to the bathroom. A couple of tense phone calls later, my husband helped the paramedics get me off the floor and into the ambulance, where I was given some kind of gas. All I remember is that it was OK going in, but tasted like mouldy fruit when I burped it back up, and it didn’t do much for the pain.
What I categorically do remember is this: you can’t fake that level of pain. It is so intense and so present that you can’t think or speak, sit or lie, move or stay still. I couldn’t even piss or shit. There were flashes of fear that I was about to die. I could hardly articulate “Bye” to the paramedic. That’s the level of pain when they pump morphine into you, no questions asked. On admission to A & E, they did pump morphine into me. Then, when the first dose didn’t work, they pumped in a second dose a few minutes later.
At some point, I was transferred to the ward, where I began my spin on the Oramorph-DHC-Paracetamol roundabout. The first day passed in a haze of painkillers, vomiting and fitful sleeping. On the second day, a doctor kindly but firmly told me that I needed move around to prevent my pain worsening. I did what I was told, but it was tough. Thankfully, the painkillers kept coming.
By day three, I began to have less pain. When Oramorph was offered, I refused it – I just didn’t want to feel the nausea anymore. I began to have more sleep; but, that afternoon, a sudden cacophony woke every patient in the ward, as a skinny, angry-looking, young woman was wheeled in by harassed-looking staff. Sitting poker-straight on the trolley, she loudly and continually demanded morphine, until a doctor was found to assess her. The outcome of the doctor’s assessment was, however, not to her satisfaction.
The unfolding exchange was fascinating to observe, as both doctor and patient did an excellent job of advocating for their respective positions. The doctor told the patient that she was viewing her objectively, and making her decision based on the patient’s responses to pain stimuli. Not to be outmanoeuvred, the patient hesitated ever so slightly before retorting, “I was keeping my composure.” This was better than TV – at this point, I was fully invested in hearing what came next.
The next salvo followed quickly: “They were literally about to give me fucking morphine in A and E and now you’re telling me you won’t give me any because you’re viewing me objectively – how is that objective?”
Ah, I thought, that’s where your argument falls down. If you are able to formulate an argument about needing morphine for pain, then your pain doesn’t need morphine.
A mobile phone call interrupted the flow at this point, and doctor was given ‘talk to the hand’ treatment. There was further shouting and swearing, first on the phone, then at the staff, before the patient furiously announced that she was discharging herself, stood up, and left.
As the dust settled, I reflected: either she was in no pain and needing to feed an addiction†, or she was in genuine pain and distress. Alternatively, there was a third possibility: she was in some pain, perhaps even a lot of pain, and was demanding morphine because experience had taught her that other painkillers don’t always work.
Like any number of endo warriors, I’ve been in that third situation – pain up at level 7 or 8, unable to converse normally, needing relief, feeling like I was being judged. And morphine is not something anyone takes lightly, because it is very hard to shake off.
For me, it felt like glue in my intestines. When I was back home and finally able to relieve the terrible constipation, I had the sensation of a plug being pulled somewhere up in my spinal cord. Immediately, a second wave of morphine hit me like a train. I spent several hours hallucinating and fearful that I couldn’t breathe. I had a night of very broken sleep in which the pictures on the bedroom wall seemed to morph into molten metal shapes and threatened to splurge out of the wall and suffocate me. I spent the following day feeling very restless, anxious and edgy. I wanted to rest but was afraid to stop moving. I went for a walk, then another, then another, then I turned back and walked again. The trees danced and the air swayed. Sounds were amplified and distant, but at least I was breathing in the blessed fresh air.
When you have that magic endo diagnosis, the world of healthcare opens up differently. But for some, it takes many years of Level 7 or 8 (and worse) episodes, just to get on to a waiting list for diagnosis. Waiting times are longer now than ever before and, in the meantime, lives are being irreversibly damaged by gaslighting, lack of understanding, and suffering. Concurrently, medical professionals are facing the impossible, daily task of applying objective means to measuring pain, a subjective phenomenon, the cause of which cannot be explicitly determined.
An accessible and reliable method for diagnosing endometriosis is urgently needed. Recent progress†† is encouraging, but still far too distant. Today’s media landscape is increasingly crowded and noisy, and the voices of those who need to be heard are becoming fainter. All the more reason, then, this March, to take action.†††
* Stolen from my earlier post: https://ownendo.com/2021/10/17/number-23/
** There is no cure for endometriosis: not laparoscopy, hysterectomy, oophorectomy, salpingectomy, any other kind of ectomy, not pregnancy, drugs, hormones, yoga, pilates, giving up gluten, the FODMAP diet, not veganism, castor oil, herbal tea, ginger, turmeric, exercise, reiki, meditation, or Santa. Many of these things can help ease the suffering caused by endo, and each endo warrior inevitably finds their own unique pathway to optimum management of their symptoms. If they’re really lucky, there can be years of relief. But, show me a cure for endo and I’ll show you Santa. In live concert, with Queen, Buddy Holly, and the Beatles. At the Colosseum. Fully refurbished. By Brunelleschi. On a hoverboard. You get the picture.
† Like all stereotypes, the ‘drug seeker’ stereotype has its basis in reality.
†† https://www.bbc.co.uk/news/articles/cm28mp8yzyko
††† There are many easy, small but meaningful ways to take action – for some suggestions, visit https://www.endometriosis-uk.org/endometriosis-action-month-2025
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