So a couple of months on from writing about the overwhelming sensations conjured by a team of researchers, doctors and midwives actually having a plan for investigating and hopefully treating my endometriosis, I still haven’t written about the plan itself. So in theory, that’s what this blog is about but as usual, we’ll see where else it goes.
I should start by saying that the timing of the plan is… complicated. 2021 has been a rough old year so far (seriously, I thought 2020 was bad) and by the time I got to my expedited appointment with the endo specialist, I had decided that if the appointment wasn’t a radical change of circumstance, then it was time for me to seriously consider returning to the UK. But, as you know, the appointment did present a radical turn of events. So when the midwife asked me, moments after the gynaecologist had presented *the plan*, ‘ and just to check, you are planning to stay in Belgium, right?’ I found myself saying yes. It seemed quite a simple answer at the time but in practice, it’s been a bit trickier.
The plan, then, is some serious investigative work before any more surgery. Music to my ears! My doctor was honest about the fact that ‘this does end in surgery’ but that by using as many resources as possible we can try to maximise the impact of the surgery by knowing exactly where I have endometriosis in advance. The first investigation is a type of internal ultrasound using ‘International Deep Endometriosis Analysis’ (IDEA). This special, and I am expecting painful, ultrasound is part of a clinical study. Basically, the scans and the interpretation of them will be compared with what is actually found inside me during surgery. The results of the wider study will inform if and how ultrasounds using this technique can offer a less invasive, non-surgical way of diagnosing endo. I’ve never signed an informed consent form quicker.
The second investigation is an MRI. For years, doctor friends have been telling me to get an MRI, even privately if I had to. The problem was, even if I found the funds for an MRI, at no point had I been under the care of a doctor who could interpret anything about endometriosis from an MRI. That’s all changed now, though. This MRI won’t be pleasant, like for the colonoscopy in March, it will involve a full bowel prep and during the scan I will be filled with various fluids via my anus and vagina. Can you think of a better way of spending your summer? Ah, yes that was the crux. Summer.
It was, is, a completely manageable crux. Both scans happen to be at various points in the summer. Which would so not be even the slightest problem, if it wasn’t for the fact that we’re still in the middle of a pandemic and I haven’t seen my family or friends at home in the UK yet this year, and many of them for much, much longer than that. In line with Brussels’ summers, I had set my heart on spending July and August working from home and reuniting with family in the UK but with quarantine restrictions and the unfortunate timing of the scans, that idea has been greatly downsized and, at times, seemed impossible. Now that I’m closer to getting home, even if it’s just for a little while, I’m finding it easier to manage but the last months have been frustrating and painful, knowing that if I stopped seeking treatment for this stupid condition then not only could I spend the summer with my family but I could consider moving back to the UK. During the last few months, I have often felt like I am inflicting unnecessary emotional pain on myself and my loved ones all for a slim chance of treating endometriosis.
Side note: it has been suggested many times this year that I move home and start seeking treatment in the UK again. But not only have I tried that twice with, let’s face it, pretty poor results but it would mean starting the clock again at a far slower pace, and that’s not to mention the professional and financial consequences. If I’m going to run on curative time, fine, but I’m not going to do so indefinitely.
Anyway, this is a problem for Right Now Hilary, stuck in Belgium without her family, but I can only hope that Future Hilary will be grateful. Persevering with life in Belgium to stay on this doctor’s books continues to feel like the right decision but it’s been a harsh reminder that sometimes, the right decision doesn’t feel like a good decision.
Once I’ve had the scans I will then, in the autumn, meet my gynaecologist again and discuss what kind of surgery route to go down. There may be more options when it comes to it but the two options she put to me in April were: standard laparoscopy performed by a gynaecologist to excise endometriosis from the reproductive system; or a more intense, interdisciplinary laparoscopy performed by a gynaecologist, urologist and/or gastroenterologist to excise endometriosis from additional organs, like the bowel, bladder and appendix. It’s really exciting science, medicine and surgery! Scary too though, especially if COVID will continue to limit my support system – thank god for good friends in Brussels. As always, I am managing my expectations but I’m happy to even be a guinea pig.
Being a guinea pig also has some other benefits because it gives me an indication of when I might have surgery. This is because the clinical study design stipulates that the surgery takes place no more than a year after the IDEA ultrasound. Timing really is everything, at the moment.
The plan didn’t stop there though. There was great concern from my GP, GI, new gynaecologist (and me) about the persistence and increasing frequency of rectal bleeding. For whatever reason, primary or secondary, it seemed I was bleeding out my arse when my pelvic pain flared up or when I got stressed, even though we have managed to turn off all vaginal bleeding with a Mirena coil. Something I find quite ironic, as back in the days of incredibly heavy periods, I used to say, ‘christ, I’m bleeding out my arse!’ Ah, Past Hilary, if only you knew what was to come.
For this reason, I was encouraged to do exactly what I didn’t want to do and go on a low-dose combined hormonal contraceptive, despite already having a hormonal coil. The logic behind this is known as ‘ovariostase’ in Dutch and French (I’m not sure about English, ovariostasis, maybe?) Essentially, it’s to turn my ovaries off and stop them from producing hormones. High on *the plan,* I said yes and then cried about it for days and refused to take what is a very expensive brand of the pill for weeks. As you might have gathered, my mood was very low and I was also worried that if I went on the pill while I was already down, I might unfairly blame the pill and unnecessarily fuel my pill-scepticism further. Eventually, after even more rectal bleeding, I took the first pill. And I’ve taken it every day since.
Honestly, I am not happy about it, nor am I happy with my new pill-induced boobs and the other usual side effects but I am taking it on the assurance of all my doctors that this is only a temporary measure to help me now. For the first time, no one is under the delusion that the pill is a permanent solution. The bleeding has lessened significantly and when I began to notice that I worried that, like my gynaecologist back in Essex, they might say, ‘well, there we go, job done.’ What’s actually happened is that it confirmed that there is a link between my hormones and/or endometriosis and the rectal bleeding. My instincts were right. Again.
So that’s the plan, COVID-permitting, and let me tell you, recent events since I wrote the first draft of this blog has really rubbed the weight of that condition in… What’s nice is that although these upcoming scans are going to be uncomfortable and probably painful, they shouldn’t require any decision making on my part yet. That’s a great comfort – there have been far too many grown up decisions to make lately. Bring on a summer of scans, being reunited with my dog and avoiding major life choices.
This week the UK government will debate the National Borders Bill, which fails to protect vulnerable refugees and will even go on to treat them as criminals. If you’re a British citizen, the Refugee Council has prepared a template email to send to your MP, imploring them to speak out and up for refugees, learn more here.