Donegal woman Julie Ronaghan shares an insight into her daily battle with the pain of endometriosis.
March 2017 is Worldwide Endometriosis month, presenting a cause for millions of women to speak out and raise awareness of the condition. Endometriosis affects an estimated 1 in 10 women in their lifetimes.
Donegal woman Julie Ronaghan (31) has been living with endometriosis since her first period at 13. 27 years on, she has become a Board Member of the Endometriosis Association of Ireland. Here she shares her story of life in pain so that other women can know that they are not alone:
When my periods finally arrived (14), I remember being literally floored by the pains. I was being brought to my knees in the school toilets thinking this can’t be normal. None of my friends were suffering in the same way.
To help with the pain, I started on the contraceptive pill at 16, and this gave me a few years of reduced pain.
My 20’s were dominated by spells of admissions to hospital, GP visits and a litany of misdiagnoses. IBS, Urinary Tract infections, appendicitis and pelvic inflammatory disease were all considered as the source of my suffering, one doctor went so far as to tell me that it was an STI!
Being blessed with a good GP, I knew that one day we would get to the bottom of my suffering. Shortly after I was married, a laparoscopy was done and nothing showed up, almost 4 years later a repeat laparoscopy revealed that I had endometriosis.
At last all these symptoms had a name, one that most people don’t recognise or even know the main symptoms of.
About 4 years ago, we began to try for a baby. I came off the pill and my pain escalated to a whole new level. It is a pain that is really difficult to describe.
One of my favourite endometriosis surgeons describes hundreds of excruciatingly painful blisters covering the inside of the pelvis. But even this does not convey how it impacts a woman’s life, her family, her career, her sex life, and her ability to live her life in very basic ways.
For me it feels like it is in every part of my body.
My period would leave me debilitated and unable to leave my bed. My pelvis, abdomen, back, legs and even arms ache as if it was a bad flu multiplied by a thousand times.
It’s the kind of pain that stops you in your tracks, takes the breath from you and makes you fall to your knees.
Despite the diagnosis that 1 in 10 women in Ireland receive, I was far from “cured”, there is no cure. Surgical treatment was basic and did not lead to any prolonged relief. The recovery after my third surgery was a long and difficult road as at the end of the day, this was when not only was I trying to manage surgery recovery, I also had to face the reality that my daily life was going to mean pain.
Unfortunately for those of us with endometriosis here in Ireland, there is a real struggle to find a doctor who will actually remove our endometriosis lesions and are left multiple ineffective surgeries later struggling to learn to live with chronic pain.
My pain not only brings me to my knees now on an almost daily basis, it is an incessant dull dragging/pinching/burning pain that haunts my day and robs me of sleep.
Today, I fight to cover the effects of life with chronic pain, I hide behind my make-up and my smile. Those close to me can see when I am in pain and have been a wonderful source of support. I have become a good self-manager, I have educated myself about my disease and in turn now support and educate other women living with endometriosis.
My hope for the future is that those in Ireland will not be faced with delayed diagnosis, substandard treatment and a lack of public awareness. The Endometriosis Association of Ireland are working hard to help raise awareness and create a support network. It is important to realise that with endometriosis – you are not alone.