I am walking for endo in solidarity with those on the journey to diagnosis and beyond. Here’s my story:

When I was 16 I was put on the combined contraceptive pill to regulate my periods, I never got pain or any problems at all with my menstrual cycle, which is why when I started getting bad stomach cramps at 20 years old I went to my GP. 

I was told at the time it was normal and prescribed OTC pain relief, but none of these seemed to help and over time the pain got worse, spreading from my stomach to my back and down my legs and it would stop me doing my normal activities and bed bound me for days. 

I went to my GP a number of times, and always brought it up to a nurse in my pill check and was always told it was normal. I was convinced something was wrong though, so I went private and paid hundreds of pounds to have early cervical screenings and tests done, but everything came back fine. On one occasion a GP actually referred me to a therapist as I was told that I needed help for health anxiety and that I was bringing the pain on in my head. The sad part about this was that I actually believed it!

This went on for 5 years, until one day I was in so much pain that I collapsed and was taken to A&E. When I was there, I had several doctors in and out confused by my symptoms and the results of my blood tests. I was sent for a number of scans including an MRI and internal ultrasounds and was told that I had stage 4 endometriosis. 

The back of my uterus was completely scarred, the endometriosis had pushed its way through my cervix and stuck the back of my womb and my bowel together. It had quite literally merged my internal organs together, and it’s fair to say the pain definitely wasn’t in my head. I was told that although it was benign, it was aggressive and that I needed surgery and to think about children ASAP. 

One week later we went into lockdown.

During the pandemic, I was on medication that stopped my periods completely and was fine for a while, but the pain started coming back gradually. I would spend weeks at a time walking around with hot water bottles strapped to my back, taking strong pain relief, and trying to concentrate on normal tasks like work was impossible. All my hospital appointments were over the phone which wasn’t ideal, and there was always the same conversation about my fertility, so off to the IVF clinic we went. 

I had to come off all my hormones for this, and in the space of 2 months I was in A&E 3 times and not even the morphine could stop the pain. 

Finally I was able to go into the hospital again to see the endometriosis specialist, but in the last 18 months it has gotten considerably worse, and after speaking to surgeons was told that I will need a bowel resection as well as a hysterectomy due to the complicated location of my endo and I have just turned 27 years old.

Despite all this, I still have a great outlook. My goal now is to talk and educate others not just about endometriosis, but women’s health in general, particularly when it comes to menstrual health (something that still, despite literally half the population having one, we still find so hard to talk about.) I don’t wish for anyone to go through a similar experience, but sadly they still do and have done for some time, with many many people having the same story as mine. 

The average diagnosis time for endometriosis is 8 years. If I had been properly educated on menstrual health, known about signs and symptoms of common conditions and also known how to properly approach this conversation with friends, family and my doctors, I know for certain I would be in an entirely different place now. 

So that’s why I am walking for endo in July, 8km every day for 8 days for the 8 year diagnosis time. For more information about endometriosis please check out Endometriosis UK where there is lots of useful information, help and support.