Endometriosis: Living With a Hidden Illness as a Portsmouth Student

Creative writing student at the University of Portsmouth, Lucy Morris, speaks out about a hidden condition and how it affects her and a million other women in the UK. 

Endometriosis is a debilitating illness found in 1 in 10 women of childbearing age, equating to 1.5 million sufferers in the UK. Endometriosis UK describes the condition as where ‘cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.’

This causes several symptoms including chronic pain, heavy periods, extreme fatigue and infertility. It is a lifelong condition and there is no cure currently known.

I have been living with Endometriosis since the age of 15 and have had painful, heavy and irregular periods since the age of 13. Every time I visited the doctor with these symptoms, the pain was assumed to be a result of a kidney or water infection but there was no explanation for my heavy periods. If it wasn’t for my mother’s persistence, I wouldn’t have received an investigative surgery, known as a laparoscopy, to find out what was going on inside me.

On average, it takes 7.5 years to diagnose Endometriosis in women but it took me 2 years to be diagnosed. I suppose you could consider me lucky, but things didn’t get any easier for me following my diagnosis.

After the surgery, I was given a number of different forms of hormonal contraception. This is the main treatment that gynecologists use for Endometriosis, but it didn’t work for me. I was prescribed the combined pill to begin with which gave me terrible mood swings, then the implant which gave me a very low disposition and then the IUD (coil). The latter was rejected by my body and was stuck in my uterus, leaving me in agony on an 8-hour flight to New York.

I was referred to a specialist women’s hospital in Birmingham, where doctors wanted to do further surgery to laser away the signs of Endometriosis. Since then, I have had this procedure done two further times at different hospitals. After each treatment, I was bedridden for up to two weeks.

My most recent operation was at the Queen Alexandra Hospital in Cosham. Due to the surgeons making more incisions in my abdomen than they should have, I was in intense pain and my mobility was greatly reduced. As a consequence, I had to take a 2-week leave from University and go back to my hometown where I could be under the supervision and care of my parents. As you would expect, this interfered with my studies and became a very stressful time for me.  I now have a new gynaecologist based in Portsmouth and I will be under his care for the foreseeable future. There is also a possibility that I will have to have operations once every two years to ease my pain.

Living by myself, away from home, with this condition can be very difficult. When I am in excruciating pain, which happens regularly, I struggle with every day activities. It also has a knock on effect on my mental well-being. The results of living with Endometriosis can cause anxiety and depression, lead to a loss in confidence and can negatively affect your body image. I experience poor body image as a result of my Endometriosis often, and it has been diagnosed as a form of body dysmorphia. The condition also sometimes prevents me from doing physical activities and meeting new people which has thoroughly affected me in my first year of university.

My pain is controlled with strong drugs which also have their own side effects such as drowsiness. There are many days where I wonder if the side effects of the painkillers are worth the lessening of the pain. I am stuck, weighing up my options. Most of all, this does not feel how the life of a student should, though I desperately try, every day, to live as normally as I can.

Endometriosis is a condition that isn’t researched enough and where it is, receives low levels of funding. If it was, we may have had a cure by now.

Heather C Guidone who works at the Center for Endometriosis Care, in the USA and suffers from the illness herself told The Guardian in 2015 that historic stereotypes about women and menstruation still hugely affect medical responses to the condition.

‘All of those cliches that have surrounded menstruation since the dawn of time. [A woman tells the doctor] “I have this horrible life-altering pain, and these symptoms”, then the doctor will kind of pat her on the head and say take this pill. Then you’ve got this vicious cycle, and ultimately she stops telling people.’

But even though some illnesses are ‘hidden’, this should not mean they are any less serious or debilitating than a broken arm or leg. They can even be worse. In our workplaces, universities and communities, we should all strive to be understanding and supportive of each other; you never know what someone else is dealing with.

And, if you are reading this because you are suffering from this condition, know you are not alone.