My endometriosis symptoms started around the age of 16 with cyclical pain which progressed to GI issues and lower back pain. My GP suspected endometriosis and prescribed the combined pill along with Ponstan (which did nothing). The first gynae I saw at 22 in Glasgow performed 2 ablation surgeries, diagnosed me with PID despite a lack of infection and assured me there was no way I had endo – but that I had adhesions due to PID - and to come back when I wanted to have children.
A few years and several hormonal contraceptives later I moved to Dublin and tried to manage my symptoms by not having regular periods. I experienced low levels of pain but managed it for 10 years with regular exercise (mainly cycling) helping me deal with the symptoms. My pain levels started to increase so I asked my GP to refer me to what I thought at that time was an endometriosis specialist. His team performed a laparoscopy and I finally got my diagnosis age 36. However, they used ablation as primary treatment and I ended up having 3 failed surgeries over 3 years with little improvement. After the 3rd surgery I was referred to a colorectal surgeon to remove the last remaining “small” piece of endo.
I had recently discovered the Endometriosis Association of Ireland and Nancy’s Nook Facebook groups and started researching excision surgery and specialists. Following this I decided to get in touch with Peter Barton-Smith in London and arranged to have an ultrasound scan and consultation. The scan showed widespread endo which explained the symptoms I was having - despite being told by the previous consultant that there was very little left.
I decided to go ahead with surgery in London and entered discussions with my health insurer (Laya) to get approval. After a bit of back and forth and an unpleasant phone call with the Dublin consultant who insisted I could be treated better in Ireland, Laya decided to cover the cost in full.
I travelled for surgery in 2018 and they found DIE (deep infiltrating endometriosis) on the bowel, Pouch of Douglas, multiple endometriomas; my ureters were almost blocked which would have led to kidney failure a few months down the line. For full transparency I was given a video of my surgery which Peter went through the day after surgery. I stayed in London for a week after the surgery then flew home. Recovery was not easy, and I had to self-catheterise for a few weeks due to nerve inflammation around my bladder. I had a painless period (my first ever) a couple of months in and saw a pelvic physio to help with my recovery. After around a year I was symptom free (with a Mirena coil) and have been ever since. Travelling for surgery was not easy but it was the best decision for me and I only wish I had done it sooner.