Patients For Safe Access
Patients Stories - Aimee Brown
My name is Aimee Brown and I am almost 30 years old. I suffer with multiple chronic conditions that bring a world of chronic pain and emotional anguish. I told my story for a long time thinking my symptoms began at aged 11 when I got my first period – only to find out recently through medical notes obtained via the Freedom of Information Act, I was first hospitalised at aged 8, with the same symptoms that would go on to destroy my teens and 20s.
I first heard the word ‘Endometriosis’ at aged 21 when I had an accidental diagnosis via a laparoscopic surgery. This keyhole procedure happened through pure chance because I hadn’t been referred to a gynecologist for the extreme symptoms, I had suffered for more than a decade previously. Despite my Mam bringing me to the GP countless times, I was consistently told I was just unfortunate, perhaps anxiety was exacerbating things and the pain wasn’t as bad as I thought.
I had 10 years of being a hormonal guinea pig, not to mention the pain killers and SSRI’s. I tried every pill, patch, injection, UV ring, bar, andmirena coil known to man and nothing brought any relief from the overwhelming, endless pain and bleeding. I would often faint or pass out with pain and fatigue and vomiting was and still is, second nature to me from the age of 11. People who I’ve gone to school with or worked with are all too familiar with the sound of me dry retch which can be super embarrassing.
I had three operations in Ireland to remove the most aggressive benign disease there is. The third completely ruined my life entirely. My symptoms increased dramatically and at this point, I was in constant excruciating pain, 24/7, not just on my cycle. I was suicidal for a very, very long time because I just couldn’t reconcile with how anybody could be expected to carry on like this.
I lost everything. A budding career that had me travelling the world, friendships strained so badly beyond repair, diminishing family relationships. Nobody understood how badly I was suffering because endo is an invisible illness. If they could physically see the barbed wire, I felt was strangling my organs, the piping hot knives I felt ripping through my pelvis, the elephant I felt was constantly sitting on my lower back and chest – maybe then they could begin to understand the depths of it all?
At this point, I’d been told I’d had all the hormonal and surgical treatment available in Ireland and all I can do is wait for the pain management clinic to send me an appointment. I had found an excellent specialist clinic in Romania and asked for a referral as this would ensure the cost was covered under the Treatment Abroad Scheme criteria. I was refused this referral and told they would do the exact same thing in Romania as I already had in Ireland. This was completely false and upon complaint, I was told I was in fact entitled to that referral I requested, and they apologised. The apology was of little comfort as I had already gotten myself deep into stress and €10K in debt to go ahead with the multi-disciplinary surgery. It was the hardest, scariest, most empowering decision I ever made.
They removed endometrial lesions from my diaphragm, deep infiltrating endo in my pelvis and both USL’s, my left ovary was adhered to my uterus, and I had adhesions removed to free my bowel. I was also diagnosed with Adenomyosis which I was repeatedly told I didn’t have in Ireland. There’s no doubt that the surgeon here missed lots of endometrial presence as both ops were just 18 months apart and I was riddled with the disease. The validation alone gave an indescribable feeling of finally being seen and heard and I’m forever grateful to the team at the Wellborn Clinic.
I waited 5 years for my first pain clinic appointment. (2016-2021) By this stage, I was well versed in cannabis research specific to endometriosis and had personally consulted experts around the world on the matter who kindly shared their research papers. I attended my appointment full of confidence expecting to have a say in my own treatment plan. After all, I was the one living with this detrimental condition all these years, surely, I would be entitled to some input? Nope. I was told to move to Canada instead and prescribed more vile pharmaceutical medication.
Make no mistake, if it were not for the use of illicit cannabis for all these years, I would be dead. Cannabis has been my only consistency through a life of debilitating physical pain, mental and emotional exhaustion, and extreme, ongoing medical trauma. Only now, through years of therapy, I have the language for what was done to me. I was gaslighted severely and continuously for years by the very professionals in place to help me. I have been diagnosed with C-PTSD as well as anxiety. The lack of access to medical cannabis in Ireland means I live in a constant state of fear of being criminalised and prosecuted for consuming the one nutrient that gives me some quality of life. What a catch 22 that is?!
I have been prescribed a myriad of dangerous medications over the years, often deadly combinations.
I was left on Palexia, known as an end-of-life drug for months on end which caused side effects so severe I lost the ability to drive. The zombifying, nauseating medications we patients are forced to try, is nothing short of torturous on top of every other obstacle we must endure in a dark life with chronic pain. We have warriors who lost their lives among the endo community globally to ‘accidental overdose’ which is so unnecessary when cannabis is proven to shrink endometrial lesions, reduce anxiety associated with chronic pain and reduce the inflammation internally easing the physical pain. These young women in their 20s and 30s are DYING for no good reason and this is what drives my fight for safe access.
I already had to travel halfway across Europe for effective surgery and thankfully opened the door for many other patients who’ve gone after me and got their second chance at life. But I’m not about to emigrate, as the pain consultant so dismissively suggested, to manage the condition long term. I’m going to stand loud and proud and fight for EVERY patient in Ireland who deserves safe access to the natural nutrient that is cannabis. It wasn’t enough to use research from Australia and Canada. Now we have studies available in Barcelona and other EU countries. If I were an hours drive away in NI, on the same island, I would have safe access via prescription. Where is this magical barrier that Government see fit to impose that suggests the exact same behavior is a criminal offence in one place, and a perfectly acceptable means of treatment in another?
If you are affected by the prohibition of cannabis, please support us by sharing a short clip on social media with your story using the hashtag #whataboutus to highlight how many of us are directly impacted by these outdated attitudes and draconian laws. Thank you.