Why does it take 7+ years to get diagnosed with Endometriosis?
Why are women in this country waiting 7 years and sometimes more for an endometriosis diagnosis? You would think in this day and age where we have the most research, the modern technology and the sheer abundance of endometriosis cases that we would finally have a gold standard test or diagnostic process for endometiosis. We don’t and to be honest its failing us. So why does it actually take so long?
Firstly, from the outset women are no being educated properly. Why is it that primary and secondary school teachers with little to no training are teaching reproductive health? (no shade to all the teachers you guys are amazing) but why not have an external healthcare professional come in and teach sex ed and reproductive health? The current cirriculum in schools isnt good enough, young people are not getting the education they deserve and need. They are told period pains are normal, they are told they have to just suffer with their symptoms because thats just a “bad period”. Kids in schools are not being told whats normal and when to actually go and seek help from a medical professional.
When they actually do pluck up the courage to go to their GPs for help, women and young girls are being dismissed, again being told "It’s just bad periods”, “It’s in your head”, or “just take some neurofen for the pain”. They are not being assessed properly, being followed up correctly or even given proper education. This dismissive attitude delays referral, diagnosis, and proper treatment, especially in young women and teenagers. But the problem again doesnt always lie with the GP, its again the system that is broken. GPs and other healthcare professionals are not being educated properly on womens health. I personally think it has improved over the last number of years but it is still well below where we should be. Unless you find a GP with a special interest in women’s health, you’re at the mercy of guesswork and symptom suppression. Treating the symptoms and not the cause isnt good enough anymore. Why are we still all just told to take the pill and carry on with out lives?
If you are lucky enough to have a great GP, you should be referred onwards to a gynaecologist. And then here comes the weight of the HSE. Waiting lists, appointment times, cancellations you name it. Our healthcare system is under so much pressure that diagnosis are being delayed, scans and appointments are pushed further and further away. All while women are suffering. So say you get to the point where youve had all your tests, youve been seen in the clinic by the gynaecologist, they tell you they THINK you might have endometriosis. They then have to turn around and tell you that youll need a surgical referral as the only way to confirm endometriosis is through whats called a diagnostic laparoscopy. So the stone is kicked down the road and now youre waiting for an appointment to see a surgeon and because its not an urgent referral (as in your surgery is not an emergency, youre not a cancer patient waiting for a tumour removal or you are not grossly unwell that its currently life threatening) you may be pushed down a list. Anyway, you finally see your surgeon, get a surgery date and have your surgery. They finally tell you what you have known for the last 7 years since you set out on this process. You have Endometriosis.
Why? Becuase they still have not got a test or scan to confirm endometriosis, surgery is still the only option. What actually needs to change for this to become better? I could say a better healthcare system but thats not a quick solution. We need Mandatory women's health training in GP and medical school curriculum, dedicated endometriosis centres of excellence nationwide to accomodate shorter waiting times, more public awareness and better school education and finally we need to actually start listening to the women coming forward.
-Leah