Diagnosed, but not treated.
Diagnosed, but no future plans… No treatment.
People often assume that receiving a diagnosis is the hardest part. That once a condition has been identified, treatment follows, support becomes available, and there is finally a plan in place to help you move forward. For me, the diagnosis was not the end of the battle. It was the beginning of an entirely different one.
After years of pain, symptoms, hospital visits and being passed from one department to another, I was officially diagnosed with Deep Infiltrating Endometriosis (DIE) in 2023. Finally having a name for what I was experiencing should have been a relief. Instead, I found myself stuck in limbo.
Diagnosed, but not treated.
Heard, but not helped.
Acknowledged, but left behind.
During the first of many procedures that confirmed my diagnosis, endometriosis was found around my ureter. Surgeon explained they couldn't remove it without causing further damage. Since then, I have experienced acute urinary retention that has had a significant impact on my daily life. What should be one of the most basic bodily functions has become another source of anxiety, discomfort and distress. I've required catheters, I have attended TWOC (Trail without Cather) appointments. I have explained my symptoms repeatedly, but despite all of it this, I have never sat down with a Urologist to talk about a plan. To fix this on going traumatic situation.
The reality of living with Endometriosis is that it doesn't simply affect your reproductive organs. It can infiltrate other parts of the body and cause symptoms that many people don't even associate with the condition. In my case, it has affected my urinary function, my heart, my mobility, my energy levels, my mental health and overall quality of life.
And still, years later, I am waiting.
Let's not forget what I mentioned in my previous blog "When your body becomes a prison" I am living with a fibroid protruding through my endometrial wall. The bleeding has been severe and relentless. The blood loss leaves me exhausted, weak and struggling to function, but the same with everything else. I have just been left.
Yet, despite the ongoing symptom's and the significant impact all this is having on my life, I have often felt as though my concerns have been minimised or pushed aside. One of the most frustrating parts of this journey is knowing that specialist care exists but not being offered access to any of it unless you have certain amount of pennies sitting in the bank.
Nobody from the NHS involved in my care suggested referring me to a specialist centre. Nobody explained my options, nobody discussed a long-term management plan. In fact, I had to ask for a referral myself and it was only that point in 2023 I found out my treatment was being completed by a surgeon involved in fertility. With zero experience with Endometriosis.
At a time when I was already physically and emotionally exhausted, I found myself having to advocate for care that should have been considered from the beginning, but instead... I have been just been left with zero treatment for three years.
Patients, should not have to become experts in their own conditions just to access appropriate treatment. Patients should not have to fight to be heard. Patients should not have to discover referral pathways themselves. Yet that has been my experience.
Instead of receiving specialist treatment, I have been moved from one medication to another in what has often felt like a process of trail and error. A guinea pig used to trail these awful medications freely. I was fitted with a Mirena coil, only for it to be removed the following day after complications and infection. I was then prescribed HRT (Hormone Replacement Therapy) which didn't agree with me and created further difficulties. After that, I was placed on the mini pill. Unfortunately, it made no meaningful difference to either my pain or the severity of my bleeding.
Each treatment came with hope, and each time that hope was followed by disappointment. Meanwhile, the disease continued progressing. The symptoms continued affecting my life and the waiting continued. The physical impact of this condition is difficult enough, but what people rarely talk about is how chronic illness slowly infiltrates every area of your life. As said in my previous blog, if effects everything! Relationships, confidence, future, finances and perhaps most significantly, it affects your ability to work.
I work from home, ironically, I work for the NHS. Yet despite doing everything I can continue working while managing a debilitating chronic illness, I now find myself facing the possibility of redundancy.
Living with a condition like endometriosis means living with unpredictability. Some days I can function relatively well. Other days I am battling severe pain, nerve pain, heavy bleeding, fatigue and urinary symptoms that make even the simplest task difficult. The problem is that modern workplaces often value consistency above all else. Chronic illness does not offer consistency. No amount of determination can guarantee how my body will behave from one day to the next. That uncertainty creates a constant underlying fear, the fear of being viewed as unreliable, the fear of being judged, the fear of becoming a burden, and the fear of losing financial security at a time when my health is already unstable.
The mental toll is enormous, I spend so much time worrying about what comes next, will my symptoms get worse because I've had no treatment for three years? Will I ever receive the specialist treatment I need? Will I be able to continue working? Will I loose my income? Will anyone take me seriously? These questions never leave me. They sit quietly in the background of every day.
People often focus on the physical pain of chronic illness, but the emotional burden can be just as devastating.
I am tired, not just tired from the pain.
Not just tired from the bleeding.
Not just tired from the hospital appointments.
I am tired from carrying the weight of uncertainty. Tired for fighting for care, from advocating for myself, tired from wondering how much longer I can continue like this.
I share my story and I will continue to share my story because there are countless others living the same reality. People who are diagnosed but untreated. People who are heard but not helped. People who continue to fall through the cracks of a system that is supposed to protect them.
This is not simply a story about endometriosis, it is a story about what happens when illness is met with delay, inaction and neglect and until something changes, patients like me will continue paying the price.
