‘I experience abdominal cramps almost every day’: What it’s like to have Endometriosis at uni

In August 2016 I was diagnosed with Endometriosis, which means that my womb lining doesn’t understand boundaries and makes a habit of growing on my other organs, as well as my womb. This is particularly problematic, as these growths bleed in the same way as the lining inside my womb during my period. They become irritated and swollen, causing a great deal of pain as the blood essentially has nowhere to go.

Endometriosis has a wide variety of symptoms, and no case is the same. For me, I experience abdominal cramps almost every day, pain during sex, heavy discharge, heavy bleeding and a high chance of infertility. I also suffer from depression and anxiety, which haven’t been explicitly linked to my condition, but in some cases can be a direct symptom.

I started my period when I was 11, and it was heavy and painful from day one. As a child, this was really scary. At school I’d been told it would only be a small amount of blood, and it wouldn’t hurt a lot. However, I spent two weeks struggling to walk because the pain was so intense. I bled so much I became anaemic. Each period I had lasted longer and hurt more, I didn’t seem to have a monthly cycle because I’d spend five weeks bleeding and have a few days off before it started again.

It wasn’t only the physical effects, I was also missing a lot of school, and it began getting in the way of my hobbies. Endometriosis can only be diagnosed through a laparoscopy (a camera inserted through your belly button), and doctors are hesitant to do this unless you have tried everything, as it is so invasive.

It took eight years for a diagnosis. I was a lab rat, pumped full of every contraceptive method under the sun, pills, implants, patches, but nothing worked. I was patronised by doctors and nurses, I was told it couldn’t be “that bad”, and I was once even told by a teacher at my all girls secondary school, whilst writhing in pain in class, “it’s just a period”.

It had made maintaining relationships hard and, although I was lucky to have a long term boyfriend, I still felt awkward discussing it. It made me feel dirty. Sex was something I was almost too scared to approach. It’s a daunting subject for any young person, but along with a condition which affected me so intimately, it was crippling to even think about. I lost friends because they thought I was lying every time I cancelled plans, I mean, who really has a five week long period, right?

It wasn’t until I went to college that I realised I was being way too tolerant, I shouldn’t have to deal with this kind of pain, it was debilitating. I started arguing with the doctors, and making appointments every time I had pain. It took a while but finally they referred me to a gynaecologist.

After another two years of constant referrals and “period diaries” I was finally given a laparoscopy. They found tonnes of endometrium growing all over my abdominal organs, and removed as much as they could. When I woke up from my general anaesthetic, high on Tramadol, the doctor came and gave me my diagnosis and I cried. The relief was instant. Although I knew there was no known cure for Endometriosis,  I wasn’t crazy, my pain had been medically confirmed, as though somebody had given me permission to feel it.

My best friend is currently going through the diagnosis process, and watching her struggle with the same dismissal I experienced is heartbreaking. It makes me wonder just how many people are suffering in silence. People need to speak about these kinds of conditions, nobody should have to just put up with chronic pain.

Everybody who has ever been to uni says this, its one of the things I think people go to uni for, you bond with people who share your interests and make friends for life. Say goodbye to having to keep explaining your pain to strangers, you’re stuck with these people forever, they’re going to end up knowing your illness better than you.

I was extremely lucky to meet my boyfriend at uni, we live in the same flat and things got serious really fast. Telling him about my Endometriosis was hard, I was so worried that he’d find me less attractive, or it would be too much for him. Telling the person you love that you’re possibly infertile is a big deal. However, he has been so understanding and does everything he can to make me as comfortable as possible when my pain gets too much. His acceptance has helped me be a lot more open about it with other people, and spread awareness of the condition.

I don’t want to hide it anymore, I’m no longer ashamed of the pain I’m facing.

@emisbrill