An endometriosis diagnosis takes, on average, up to eight years but what follows is a life of day-to-day struggle trying to manage it. Despite a delayed diagnosis causing prolonged pain, potential infertility and mental health challenges, nothing is yet to change. Molly Lee discusses the process of getting a diagnosis and how it’s not helped with a solution
Getting a diagnosis is tough. To get one, you have more than likely been prodded, scanned and had blood drawn more times than you can count. There are times when it can lead to a solution. But then, there are times when a diagnosis does nothing. It just labels you and off you go.
It’s even worse when it takes a long time.
I have all too much experience with this.
At the age of 16, I was diagnosed with primary dysmenorrhea which is just a fancy term for painful menstruation or periods.
Then at the age of 18, I was diagnosed with PCOS (Polycystic Ovary Syndrome) which affects how my menstrual cycle and ovaries work.
At the age of 19, I received my endometriosis diagnosis. Tissue such as the lining of my uterus has grown outside of it, attaching to my colon and who knows where else.
Although there is a three-year timeframe between my first and last diagnosis, it was tough.
Even before I was 16-years-old I had complained about the debilitating periods and the excruciating pain. But it took so long to get anywhere.
I’ve had endless amounts of blood withdrawn for tests, three different types of ultrasounds, several pelvic examinations, two MRIs and a laparoscopy (surgery). It was the laparoscopy that ended up confirming the endometriosis.
But even now, with a clear medical diagnosis, I have no real solution. Yes, I have an answer to all the pain. Yes, I get taken a little bit more seriously. Yes, it’s on my medical records that I do indeed have a condition.
But no, I don’t have a solution.
There’s no cure to my endometriosis so it’s all about pain and hormonal management.
It’s hard not to feel down when it takes you so long for a proper diagnosis, just to be told there’s nothing they can do. And in this case, I’m lucky – from start to finish, it took three years.
On average, it takes eight years for someone to be diagnosed with endometriosis.
But with the diagnosis, comes a life sentence.
Endometriosis doesn’t just go away, even if it’s removed through cutting or burning it away in surgery, it comes back. It’s something you have to live with for the rest of your life.
Even if you have a hysterectomy, it does not cure it. It can alleviate symptoms related to the condition, but the tissue can still recur in other areas of the body.
I guess I would feel a bit better about it if it didn’t take myself and thousands of women across the UK so long to get the answers.
But improvements are slowly being made for those with endometriosis.
Australian scientists have developed a fast and accurate blood test that screens for concentrations of certain markers that might indicate endometriosis. Researchers hope to widely distribute it this year.
This test would be more convenient than the current method of diagnosis, but it could also help find ways to control the condition.
We could get our answers sooner rather than later.
And maybe provide us with a little bit of hope.
