Endometriosis affects 1 in 10 women, yet it often takes years - sometimes even a decade - to receive a diagnosis. The journey is often marked by misdiagnoses, frustration, and an exhausting cycle of trial-and-error treatments, leaving so many women feeling unheard.
This Endometriosis Awareness Month, we’re sharing Suzanne's story - one of resilience, self-advocacy, and the search for real relief. Like so many others with endometriosis, Suzanne’s journey to a diagnosis wasn’t straightforward. She faced misdiagnoses, delays and a lack of specialist care. When she was finally diagnosed with stage 3 endometriosis, she endured multiple surgeries, only to find that her pain continued.
If you’ve ever felt unheard in your endometriosis battle, her story is a powerful reminder that you are not alone in this fight 💛
Can you share a bit about your journey to getting an endometriosis diagnosis? What challenges did you face along the way?
I suffered for years with what I thought was a dodgy stomach, severe bloating that sometimes got so bad I had to lie on the floor for relief. Funnily enough, I never had heavy periods. They were the opposite, very light, so I never thought anything was wrong there.
In 2019, I was sent to the hospital with severe pelvic pain, and without thought, they removed my appendix. Soon after, I was told my appendix probably wasn’t the cause of my pain and there had been no need to remove it. My symptoms only got worse from that, and I was then referred to a gynaecologist.
Of course, this happened just at the start of COVID, and I didn’t get the referral until October 2020. That’s when I was diagnosed with stage 3 endometriosis. Since then, I’ve had two more ablation surgeries, but if I’m honest, my pain only got worse after them, especially around my period.
Mentally, I have been very up and down. I’m usually okay for two weeks, but then I suffer for the next two weeks - the week before and the week of my period.
What have your biggest struggles with managing endometriosis symptoms been over the last few years?
My biggest struggle was probably my mental health. I feel it suffered a lot, especially during COVID when I was in immense pain but couldn’t be seen. I wasn’t urgent enough.
I feel Endo is a silent killer. In the sense, I might look fine on the outside, but on the inside, I’m in severe pain, just trying to get through simple daily tasks. I also find it so hard to get help from the right person - there’s no real Endo specialist in Ireland.
How has our blend made a difference in your daily life and overall well-being?
In November and December 2024, I suffered through two of the worst periods of my life. In December, the pain was so bad that I ended up in A&E. No painkillers was working (I’ve tried a lot!). Heat patches gave some relief, but I was literally on the floor in pain.
When I went to A&E, I was there nine hours waiting to see the gynae on call - only to be told there was nothing they could do and that I needed to go back to my private consultant. Three months would be when the consultant could see me next!
I was desperate for relief, so I tried several things, and the two that worked for me were weekly acupuncture and Gigi. I had only been taking Gigi for two weeks when my next period came, and I was pain-free. I couldn’t believe the difference. I’ve been on it ever since and just cannot recommend it enough.
What advice would you give to someone who is newly diagnosed or still searching for answers?
My main advice would be that you have to advocate for yourself. Not to let GPs and consultants fob you off which believe me is happening all the time and it’s frightening. Also, not to get bogged down by articles and research as there is too much conflicting information out there.
I’ve been given so many painkillers down through the years, and I really wish I had turned to something alternative earlier, so I’d definitely be advising anyone not to rely on painkillers.
Finally, I’d advise anyone with Endo to go to therapy. I started therapy in 2021, and while it didn’t relieve my pain, it helped my mental health so much. It also stopped me from becoming obsessed with researching my condition.
If you could go back and tell your younger self one thing about living with endometriosis, what would it be?
I would tell my younger self to stand up for herself. Only from going to therapy have I discovered my voice and I am not afraid to speak up now. I would also tell my younger self to be open about what I’m going through and not be afraid to let people around me know how I feel.