Stephanie's story

stephanie discusses how she was diagnosed with endometriosis

Learn how Stephanie was diagnosed with endometriosis and how she took action afterwards.

"I was just told I had Stage 4 endometriosis... I wasn’t given any further information even though I had never heard of endometriosis before."

My experience

I had been on the pill, and later the implant, for some time and had experienced only what I thought was normal period pain. It wasn’t until I decided to take a break from the implant that I experienced my natural cycle in all its glory. Wow… For 2 days a month I suffered with excruciating and debilitating pain. I had to change my rota each month to make sure I was off work when my period was due. I experienced bloating, pain and very heavy periods, along with a change in my bowel movements. My doctor was concerned about my symptoms and booked me in for a scan.

However, before I had my scan I actually collapsed with pain while I was out jogging. I was taken to A&E, given some codeine and then sent home. No further action was taken as I was already booked in for a scan the following week. My scan showed that I had a 10cm cyst on my left ovary. I was put me on a three-month long waiting list for surgery. At this point there was still no mention of endometriosis, but I was told I may lose an ovary.

Following my operation, my surgeon explained he had removed the cyst and managed to keep my ovaries intact. I was just told I had Stage 4 endometriosis... And that was that. I wasn’t given any further information even though I had never heard of endometriosis before.

Becoming an Endometriosis UK Support Group Leader

I wanted to set up a support group because I was disappointed with the lack of information I received about my illness from the health professionals. There was little post diagnosis care offered to me. I took to the internet to look for answers and discovered Endometriosis UK. I thought that there must be lots of other women with this illness and that being a group leader would allow me to bring people together to seek a deeper understanding of the illness.

Meeting other women with endometriosis is vital to coping with the illness. The support and empathy they can provide is a wonderful thing - it can prevent feelings of helplessness. Sometimes we have to push for the type of medical care we deserve and it can be difficult at times. There is a lot of work to be done to raise awareness of the endometriosis and to seek better care, this can only be done if women with endometriosis come together and show how strong we really are.

- Stephanie

Stephanie is the Endometriosis UK Support Group Leader for Glasgow.