In January 2024, I was diagnosed with stage 3 endometriosis, after 13 years of being misdiagnosed by UHCW with 'IBS' at 17 years old. But my story doesn't end or start there.

In 2016, I was referred to gynecology with multiple symptoms of the condition, as well as a family history of it noted on my file. A laparoscopy (the standard diagnostic approach) was recommended and never actioned. Back then, I never knew how serious this was. But 5 years later, I would learn whilst living in Australia the disease had spread to ovaries, and made me subfertile at 28 years old.

After undergoing unsuccessful fertility rounds at a cost of around 5k, I focused on surgery. It was a relief, at minimum from the ongoing pain I'd experienced on/off each month. But after a 13 month wait, the surgery only made my life worse. My atertry was cut during my laproscopy and I bled heavily into my pelvis, developing a grade 3 hematoma. UHCW then discharged me with missing paperwork, medication, and no-follow up appointment. I wasn't even told when I could drive again, have sex, or work. The most I got was a phone-call, 2 months later where I was told to go speak to my GP about any symptoms I had.

I've spent 5 months of my life walking on a 'health' tight rope, developing infections, nerve damage and living everyday in pain, (as opposed to every other week), where sometimes even walking, using the toilet or basic actions like sitting are impossible. Even despite having a moderate form of the disease, I had to use Facebook groups to explore my ongoing care and referral pathways, to ensure the next hospital who picked up my care eventually, would have a specialism in more advanced forms of the condition that can impact multiple organs beyond the reproductive system. Yet the more women I speak too, the less my story seems like unfortunate case. For whatever reason, we continue to go undiagnosed and without treatment for years, only to have to fight again for care once we receive a diagnosis.

I'll likely not be able to walk 8,000 steps a day from July (my physio will tell me off), but I've charged up my dusty garmin and I'm going to try. I know times are tough, but if anyone can donate even a small amount to help improve the research and care for a disease that impacts 1/10 of us, it may even help someone else not have the experience I did!