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Alice’s endometriosis story

As a 25-year-old, Alice has not only spent years managing endometriosis, but also managing the expectations of friends who might not always understand what it's like to have a chronic condition.

This video is captioned


Hi. My name's Alice. I'm 25. I'm going to talk about my journey with endometriosis. I don't really remember a time before I had really painful periods. It just feels like it's been there since the start to the extent where I would be vomiting and have to take days off school every month. So that was pretty difficult, and at the time I talked to my GP about it, and I think much the same for most people around that age, I was put on the oral contraceptive pill to try and control the pain which didn't work.

So, it wasn't until I was about 21, 22, that the word endometriosis was even mentioned. So, at age 22 I was diagnosed by laparoscopy, and that was probably, I'd say, about seven years after the painful periods started. So, it took a while, not as long as some women I've heard of, but still probably longer than it should. It was just a Google search that led me to a holistic health clinic that focuses on women's pain. I got a gynaecologist, an endocrinologist, and pelvic floor physio who every week have meetings to talk about the really complex cases of which I was one, to make sure that everything was staying on track and any new medications or anything didn't conflict with others.

So, yeah. It was really, really good, actually, finding them. They helped me hugely, especially the pelvic floor physio, because in my first consult with the gynaecologist, it transpired that most of my pain stemmed from have an overly tight pelvic floor and it was muscular pain as opposed to the endometriosis pain.

I tend to sort of try to do a lot more weight bearing exercises these days. I also go to cardio. It's hard when you're in your 20s and you want to socialise, and you want to go out for dinner and drinks with friends. Sometimes you feel like you can't keep up, if not just because of the pain, but also just because of the fatigue. I'd find my friends going out two or three times a week, and I couldn't do it, because I would just be so tired. I think that's one thing people don't realize about endometriosis. It's not always about the pain. Sometimes it's just so, so exhausting that you can't even get off the couch.

I think for younger women, really the crucial thing is the mental health side that accompanies chronic illness. For me, I was so fortunate, not so much that my friends were sick, but I have two of my very close friends. One has Crohn's and one has Chronic Fatigue. So, it helped me immensely to have people there who understood what I was going through, and I find that's something that a lot of young people really miss, trying to find a friend that understands.

I think that's of huge importance. It made such a difference to me to have friends around me who would say it's okay to spend your Saturday night on the couch. And, to just have that validation that you weren't crazy. You weren't flaky. You weren't putting it on and pretending to be in so much pain to get out of things. Just to have someone reassure you is so important.

If the pain is that bad, if you're vomiting every month, if it's down your legs, if you can't move, if painkillers don't work, there's something wrong. Go get checked out, and if your doctor's unwilling, find another doctor.