Heather Dorrell-Biggs’s Story

I started having issues around 9 or 10 years ago. Initially, I went through the process of being swapped from one brand of mini pill (progesterone only pill) to see if that worked. I finally got sent for my first ultrasound maybe 6 years ago and was diagnosed with PCOS and told there wasn’t much they could do but swap out the pill for an implant, so I did that.

My symptoms kept getting worse, I kept going back, kept being fobbed off – maybe your implant is running out, have you had a cervical smear recently, all the usual stuff. About three years ago, a doctor finally took me seriously when I cried in his office. I was run down, on my period losing a lot of blood for three weeks out of every month, and my flare ups had become something I literally feared. He told me that PCOS wouldn’t explain my symptoms alone, that I might have endometriosis, so he referred me.

Like many people struggling with pain in the UK, I was added to a waiting list that I was told was 84 weeks long. At this point, my symptoms had become devastating, my quality of life was disintegrating, my partner was desperate for me to get some help – I was on codeine and strapped to my hot water bottle constantly. It took over two years to finally see a consultant. I felt dismissed again when I was told ‘all women have period pains’, like I didn’t know the difference. I finally had a diagnostic lap after yet another pelvic ultrasound and was diagnosed with endometriosis on both of my uterosacral ligaments.

Being diagnosed was bittersweet – I finally proved that I wasn’t exaggerating or being dramatic, and have been able to start feeling less guilty and burdensome. But for me, I think that my disease has progressed so much because of that wait that I’ll never live a normal life again. Getting in the shower some days feels like climbing Everest. I used to be so active, I was my husband’s gym buddy and loved long walks and going out socialising. Now I can barely get out of bed to drag myself to my desk. Everywhere I go, a heat pad and TENS machine go with me, and I’m scared about the future.

Connecting with other people with endometriosis has been so important for me to move forward. Opportunities to advocate for ourselves and for each other can’t be passed up on. It’s a daily battle, but we don’t have to fight it alone.