Living with endometriosis can be both debilitating and isolating. The condition affects your physical and emotional wellbeing, which can have a knock-on effect on the relationships you have with others around you. Feeling like you’re dealing with the condition alone is a common emotion for many people with endometriosis, your pain can make you feel like a burden on those around you which in turn can cause you to further isolate yourself. For that reason, it’s important to know you’re not going through this alone.
At Joii, we want to strengthen the bond between the community through sharing and uplifting the voices from the women within it. Our Living With Endo series highlights the journey people have been on, from the onset of their symptoms to reaching diagnosis, all the way to how they’re living with their condition today.
In this post, we’re chatting to Paula Byrne, who fought back at the idea that pain was something she just had to ‘accept’ in her life. Choosing to train as a professional menstrual coach. Paula now helps herself and others to manage her endometriosis symptoms and live a good-quality life.
Where it began
Speaking about her road to diagnosis, Pauls tells us: "For as long as I can remember I’ve had extreme period pain. Pain that radiated down my thighs, my buttocks, tearing through my pelvis. Days spent in bed, missing school and work, heavily medicated with prescription painkillers. Along with this there’s nausea, weakness, fatigue, migraine, IBS, irregular bleeding. Symptoms that I didn’t realise were related including bladder irritation, ongoing unexplained fatigue, low immunity, painful bowel motions, pain with sex and trying to use tampons. I accepted this as part of having periods because as a teen I was told my pain was normal!"
"I was put on the pill at 15 to help with the symptoms. But it didn’t make much of a difference. In my mid 20’s I came off the pill and ended up having surgery for an ovarian cyst. That’s when the endometriosis was discovered, by mistake! 6 years later I had a second ablation surgery, which is not the gold standard, as excision surgery isn’t available in Ireland."
"Since then I’ve educated myself on what endometriosis is and the inflammatory nature of the condition. I trained as a professional menstrual cycle coach and facilitator to educate myself on what a typical menstrual cycle experience is like. What I learned was so valuable that I created The Mindful Cycle, a practical, holistic and mindful approach to menstrual education and wellness. Thankfully, I now manage my symptoms successfully without hormonal birth control, through nutrition, lifestyle and a mindful connection with my menstrual cycle. Tracking my patterns and adjusting my self-care needs accordingly. I still get flare ups but they are mostly related to stress."
Reclaiming the narrative
"For many years endo had a negative impact on my life. I often felt like I didn’t fit in, like something was wrong with me. I hid the extent of my pain and I couldn’t understand why I couldn’t get on with things when I had my period. I couldn’t make plans when I would have my period. In later years when I was training hard in the gym I would force myself to train through the discomfort, topped up with painkillers because I wanted to be “normal”! Now I realise that was detrimental to my well-being. My symptoms are actually worse if I train too much coming up to my bleed! Living in tune with my cycle has helped me manage my symptoms so much. I still get symptoms and pain but I rarely require prescription meds now."
How can Ireland improve?
"I feel that trained experts in the field of endometriosis need to be available here in Ireland who understand the multifaceted nature of the condition. Experts in excision surgery and a multidisciplinary team on hand for aftercare. A more holistic approach needs to be included too, informing patients about how they can adapt their lifestyles to help manage the inflammation side of the condition, in practical, sustainable ways."
A final word for other endo warriors
"Be kind to yourself, seek support and get to know your patterns so that you can give yourself permission to rest and implement the self-care that you need, when you need it."