As I write this, I’m currently waiting on a long list of results, referrals, and upcoming appointments.
I’ve never been someone who lets my health get the better of me, and I don’t dwell on things—because, let’s be honest, what does that really achieve? It gets you nowhere.
I’ve suffered with heavy, painful periods for as long as I can remember. Over the years, I’ve been back and forth to countless appointments, only for it to be brushed off time and time again. Usually, the solution was to try a different form of contraception or yet another medication.
A few years ago, I was prescribed Norethisterone, which I take alongside my contraception to help manage the symptoms. For the most part, it does help. However, one particular doctor finally took things seriously and referred me for scans. That referral led to gynaecology, and from there I was referred to the Colchester Endometriosis Specialist Team, with suspected Deep Infiltrating Endometriosis.
Getting an endometriosis diagnosis is incredibly difficult. For many people, it can take years—and for some, a diagnosis never comes at all.
Colchester contacted me to discuss their findings and talk through the next steps. As they explained, scans alone don’t make diagnosis straightforward. And if it isn’t endometriosis, then the question becomes: what is it?
After several in-depth conversations with a specialist, he suggested trying a new form of contraception that may help in the meantime. I wasn’t keen—for a number of reasons. Mainly because it induces a menopausal state, alongside a counteractive medication to bring you out of it. It’s complicated, and at just 33, with thoughts of having children in the future, I don’t want that option taken away unless it becomes absolutely necessary.
For now, my case has been referred back to the monthly board, including scan findings and notes from our discussions. They’ve also requested advice and input from specialists in London.
The likely next step would be a laparoscopy, but that brings its own complications. The procedure requires being positioned upside down to move organs for better visibility during investigation. Due to my heart complications, this naturally raises concerns. I’ve been sent for blood tests to check my P-POSSUM score, which assesses surgical risk and potential mortality. I’ve also been referred to the anaesthetics team so they can review my case in detail.
And of course—it wasn’t going to be that simple.
During one of the scans, they also discovered something called a Tarlov cyst—a small, fluid-filled sac.
A Tarlov cyst is a fluid-filled sac that forms on spinal nerve roots, most commonly at the base of the spine. This could finally explain my long-term back pain. I’ve now been referred to orthopaedics so they can investigate further and decide on any next steps.
So for now, it’s a waiting game—more tests, more opinions, and more uncertainty. But at least, finally, things are being taken seriously.
