Myth: Endometriosis is a gynaecological condition
Fact: Endometriosis is a full body inflammatory disease
As it is Endometriosis Awareness Month, I wanted to share a component of my Endometriosis experience which has been one of the biggest (and most painful) challenges.
Endometriosis is a difficult condition to manage, mainly due to the lack of control over symptoms. Symptoms vary greatly from patient to patient, which is one of the reasons it is so difficult to diagnose. Yet symptom variation and breadth are something which need to be emphasised and discussed more fully during diagnosis. There was never a point with any medical professional where I was given a full rundown of all possible symptoms I may experience – I was only ever introduced to the gynaecological aspects.
This is incredibly worrying, as how can patients effectively manage and treat a condition when they don’t know all its possible components? I remember one night two years or so ago, walking back home and my legs began spasming. Suddenly they weren’t working properly; I felt tingles all up the back of them and my feet went slightly numb. I felt the panic creep up and rise into my chest. My boyfriend who had been walking alongside me continued ahead, unaware of what was happening, but my throat was too choked with panic to call out to him.
I tried walking forward, but instantly experienced a searing pain. It was sharp and sudden, creeping out of nowhere. Thankfully a railing was nearby which I frantically grabbed hold of, whilst calling out to my boyfriend who came running back. We took a taxi home and shaking, I Googled possible causes of what I was experiencing. Very unexpectedly, I discovered that it was highly likely to be severe nerve pain and there was a possibility it could be due to my Endometriosis.
Further Googling and research resulted in me discovering that it was, indeed, sciatic issues brought on by my chronic illness. Sciatic Endometriosis is a condition where the lining of the uterus or the endometrium grows around the sciatic nerve and puts pressure on it.*
Never was the possibility of sciatica discussed when I was initially diagnosed; in fact, I had a GP tell me that I was “too young” to experience such a symptom when I organised an appointment following this initial episode. Yet sciatica can present in anyone of any age and is fairly common amongst Endometriosis patients – especially if Endometriosis legions are present near to or on areas affecting the sciatic nerve.
This January I was admitted to A&E for sciatic and nerve issues, this was one of many A&E admissions I have experienced with Endometriosis symptoms.
Flare ups are a very common aspect of this chronic disease and they wreak havoc on patients’ lives and social plans. Working full time is not always possible for some patients, as chronic fatigue, pain patterns and flare ups make work life an unpredictable challenge.
Holidays abroad and even meals round people’s houses – all of these become somewhat difficult to navigate with the possibility of flare ups on the horizon. Given the inevitable and frequent occurrence of poor health, lockdown life is comparable and representative of many chronic illness patients’ day to day.
Given the range of treatment options available for Endometriosis, it may seem odd that flare ups remain a frequent occurrence. Yet despite having multiple surgeries, utilising medications to suppress symptoms, avoiding trigger foods, managing rest patterns and diet – sometimes none of this is enough to avoid a flare up and it will inevitably creep up out of nowhere.
As it’s Endometriosis Awareness Month, I just want to highlight that not all illnesses are visible – some of the worst and most painful are those that are kept hidden by patients who are merely trying to grit their teeth and get through the day.
* Seckin Endometriosis Centre (SEC), https://www.drseckin.com/endometriosis-sciatic-region
[Image Description: Three versions of Camilla stand alongside one another. From right to left, Camilla is wrapped in a mint green towel with a purple and polka dot towel wrapped around her drying wet hair. In the centre version Camilla wears a purple dressing gown with arms crossed and brown hair wrapped up in a messy bun. She is wearing glasses, striped blue and white PJs along with light purple fluffy slippers. In the left version her hair is hanging and she is wearing PJs, the bottom of the set are blue and covered in small bumble bees while the top is grey with pink words ‘sleep’ across her chest. A pink hot water bottle is tucked into her trousers and she has a sleep mask on her forehead. A yellow banner titled ‘flare up fashion’ sits above all three of them.]
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