Have you ever heard of endometriosis*? Or adenomyosis**? No? Well, you’re not the only one. And yet, both of these conditions aren’t rare at all, with endometriosis affecting an estimated 11% of all women and those assigned female at birth. In reality, this number is thought to be much higher, given that many are still undiagnosed: on average, it takes over 7 years to get a diagnosis. 7 years!
You may wonder why I chose to write about this. For one thing, the upcoming month is endometriosis awareness month, so I wanted to get a head start. People need to know about endometriosis, so that science can catch up. More research is required, and doctors will need to be properly trained.
For another thing, I may or may not have endometriosis and/or adenomyosis and it’s been a rollercoaster – both a physical and emotional one.
I’ve been seeing doctors for diffuse stomach issues and pains for as long as I can remember. I’ve consulted with dietitians, tried numerous diets, got tested for food intolerances and allergies, had a truckload of lab tests done to rule out parasites and inflammatory bowel diseases, had ultrasounds and MRIs done and so on. Apart from a handful of food allergies, absolutely nothing was found. On paper, I’m as healthy as I can be. Which is great!
But why am I in pain all the time?
This is where I’d like medical experts to step up and help me with where to go from here. After all, they’re the experts – imagine what they could do for me (and all my fellow sufferers), if they really listened to me and kept pushing for a solution other than have you tried yoga/peppermint oil/meditation/psychotherapy? I’m not saying these are bad additional treatments and I’ve been lucky enough to try them all. But that’s all they are: additional treatments. They can make life better, but they can’t replace a proper diagnosis and treatment.
Last December, as I was curled up on my sofa and strapped to my heating pad while crying from pain, I decided that 2023 will be the year in which I’ll finally get to the bottom of what’s been making my life difficult for so long. For me, this means a lot of additional anxiety: making lots of phone calls for medical appointments, trying to fit the appointments into my regular schedule and actually going to the appointments, which requires a lot of preparation: what am I going to say first in order to make myself heard, how am I going to stand up for myself if they refuse to listen, how should I react when they dismiss my symptoms?
My concerns have been brushed off by professionals so many times that I constantly must remind myself that my pain is real and valid. Every time a doctor questions or negates the severity of my symptoms, I question everything. Maybe I’m not actually in pain? Maybe it’s all in my head?
Every time I have a low pain/mild symptoms day, I wonder if I’ve been imagining it all.
To be fair, I’d like to note that some of my doctors have been really great at listening and validating my experience, but given that they weren’t specialised in gynaecology, they eventually arrived at their wit’s end.
I feel like I’m constantly complaining about my pain to my friends (and I probably am – I know how hard this can be to hear and I’m really grateful for those that are still listening). The reason I do this is because I sometimes wonder if maybe everyone feels the way I do, since I thought many of my symptoms were “normal” for the biggest part of my life. Maybe I’m just exaggerating?
Another reason is that I need people to know and understand why I struggle with so many things that others get excited about, like eating at a restaurant, going to the movies after work, going out (at night, can you imagine?!), and other seemingly inconspicuous activities.
All of this – managing my daily life AKA trying not to take on too much (which sadly also applies to fun activities), balancing work, doctor’s appointments, and other health-related appointments – has been taking up all of my resources. I don’t have any space nor energy left for many things that might actually be good for me.
For instance, I love the idea of exploring new places, getting to know new people (one at a time, obviously – I’m still an introvert, after all) or going on fun weekend or day trips with the people who know me best, but even the thought of these is too much.
This is particularly frustrating because I used to burst of energy back in the day, despite the fact that stomach pain has always been a part of my life.
I’d like to end this post by asking my Luxembourg-/Germany-/Belgium-/France-based readers for a favour: if you have trustworthy or first-hand information about a medical practitioner that is truly experienced both in diagnosing and treating endometriosis and adenomyosis (surgically), feel free to let me know.
I’m aware that the internet is filled with the names and contact information of specialists but it isn’t easy to know how experienced they actually are.
And with this, I’ll leave you be. I hope you’re having a pain-free (and anxiety-free) day! 🧡
*Here’s some information (most pages are in English, one’s in German) about endometriosis:
- https://www.one-in-ten.de/
- https://www.endometriosis-uk.org/information
- https://www.nhs.uk/conditions/endometriosis/
- https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
It is interesting to note that there’s no consensus about how endometriosis shows up in the body, which indicates that it varies from person to person, and that it’s not clear why endometriosis exists – hence the need for more research.
If you’re on Instagram, I find this profile (and many others that I won’t list here though) very educational, and this one very validating in a “you’re not alone” kind of way, on more than one level.
**Here’s some information (also in German and English) about adenomyosis:
Carrot Days 