Emma's story

“I’ve always been someone who has suffered with painful periods and just thought it was normal”

“I started my periods quite early, at around 9 or 10 years old. I’ve always had painful periods and pain outside of my period as well, but I didn’t think it was that unusual.

Throughout school, I always had spare pads on me or painkillers. I didn’t leave the house without some sort of provision because I just didn’t know how I was going to be, even when I wasn’t due on my period. It would just come out of the blue. One time I had to leave a lesson because I was in so much pain.

I had been going to the GP about it during COVID and I felt like I was on the phone all the time - and I was never speaking to the same person twice. They suggested trying different contraceptive pills and although I didn't want to keep switching, in the end I did as I was so desperate. I just wanted something to help me.

There were times that I did feel dismissed. Doctors would suggest the pill or insist that it will improve as I get older. I was even told that if I had a baby, it might help with pain. I was in my early twenties at this point, and I didn’t want to have a child just to get rid of the pain.

I eventually got sent for an MRI and an ultrasound, and they all looked normal, so I was at a bit of a loss. Finally, one GP said ‘you might have endometriosis.' I hadn’t heard of it - I was about 19 or 20 at the time - so I went home and googled it. It made so much sense."

Over the next two years, Emma went on to have two laparoscopies, which are minimally-invasive surgical procedures that allow doctors to examine the organs inside the abdomen or pelvis.

After undergoing her first laparoscopy with a general gynaecologist, Emma was left uncertain about whether the endometriosis had been fully treated or if it might return. More recently, she had a second laparoscopy performed by an endometriosis specialist, who surgically removed the endometriosis rather than burning it away, as had been done during her first procedure. They also found a cyst on Emma’s fallopian tube, called a paratubal cyst.

"It was quite validating to find that out - to know I wasn’t making it up or making a big deal out of nothing"

“I clearly had more severe endometriosis than the first gynaecologist assumed. It was quite validating and reassuring to find that out- to know that I wasn’t making it up or making a big deal out of nothing.

It’s amazing that a gynaecological issue that is dismissed so much can cause pain in different parts of the body. Six months after my first laparoscopy, I started getting pain in my right hip and thigh area, which eventually spread down my leg and into my foot. Every other day this pain was flaring up for about a year. My gynaecologist confirmed that endometriosis can cause chronic pain outside of the pelvic area.”

“You feel like you're the only person going through the pain”

“When you are going through something like chronic pelvic pain, especially with it being linked to women’s health and menstruation, you feel a bit embarrassed about it, like you’re the only person going through that pain.

When I was younger, it felt like a bit of a taboo to talk about period pain with my friends. I didn’t think it was what people wanted to hear and I didn't want to make a big deal out of it. Now, I’m much more open and, since knowing that I have endometriosis, I feel strongly about advocating for more awareness about pain and chronic pain.

Speaking about it with people and finding communities online who are going through similar things has definitely helped. Endometriosis UK has lots of support groups, and I’ve joined a few of their group chats.

I also confide in my friend who has tendinitis. Even if it’s a different type of chronic pain, it's comforting to have a friend who understands what it's like on the bad days, when the pain flares up. We don’t get upset if someone needs to change or cancel a plan, and know to check in frequently with the other. It’s great to have someone who just gets it."

“At the moment, I feel like I’m in the best place I’ve been in for a long time, after my two laparoscopies. But we can’t say for definite whether the endometriosis will grow back or not.

More understanding and awareness would be the best outcome of research, to help open up the conversation and better understand what causes pelvic pain and endometriosis. Period pain is hard to deal with anyway, without having another condition on top of it.

Some advice I’d give to someone with chronic pelvic pain, endometriosis or pain in general is that you are not in it alone – there are people out there going through the same thing and people who will listen and believe you.”