Endometriosis: We are not ovary-acting!

Being sick, passing out and severe cramping occurs every month for me. I can’t move, I can’t eat and more often than not I can’t speak because the pain is so intense.

What’s wrong with me? My doctor says it’s normal; I say, it is endometriosis.

I got my first period when I was 12 years old. I remember walking laps of my bedroom because my late-night research had confirmed that exercise helped to ease pain. I would be bed-bound for days with a hot water bottle waiting for painkillers to kick in. They rarely did.

My mum realised that something was not right early on. I would be sat in pupil reception at school, white as a ghost, sweating profusely, begging them to call her to pick me up. “I would have to pull over to let you be sick on the way home,” she said.

This became a consistent problem for me. I was missing school, and nobody understood why. It was passed off as my period and I was made to feel dramatic. Every girl has periods so I should just get on with it.

One in 10 women is affected by endometriosis and a new report by an all-party group of MPs has called for improvements in endometriosis care in the UK. urging that diagnosis times — currently around 7.5 years — should be cut in half.

Jodie Hughes, 36, is a charity worker for Endometriosis South Coast. She said: “There has always been a stigma surrounding periods, people don’t like talking about them — we need to take advantage of this menstrual awareness awakening.”

I have had numerous appointments at the doctors to try and resolve the issue. I have been assured it is completely normal and to try the Pill. Unfortunately, I live in fear of my time of the month — should this be brushed off as ‘completely normal’?

On doing my own research, I discovered endometriosis. It was never a word that I had heard of before but the more I read about it, the more my symptoms and experience matched up to the description of the disease. It occurs when tissue grows in the ovaries and fallopian tubes. It was such a simple explanation, but it was a revelation for me.

Symptoms of endometriosis include chronic pain, fatigue/ lack of energy, depression/ isolation, problems with a couple’s sex life/relationships, an inability to conceive and difficulty in fulfilling work and social commitments.

Unfortunately, it is the diagnosis that is the problem for many women across the UK. I have not had a successful diagnosis yet.

Meghan Stinger, 21, a student from Oxford spent a week in hospital in pain. She said: “The doctors failed to diagnose me and told me I had suspected appendicitis. I didn’t and in order to be referred to a gynaecologist, it would have cost £400, that’s money that I just don’t have.”

Endometriosis UK says that infertility among women with endometriosis can be as high as up to 30- 50%. Meghan said: “I fear I can’t have kids, I’m such a maternal person so the prospect of this is devastating.”

There is no cure for endometriosis and the only strategy is to help ease symptoms. The three options are surgery, hormone treatment and pain relief. Meghan said: “The surgery is super invasive, and the problem is, there is no guarantee as to whether this would solve the problem.”

I have been on the Pill since the age of 13. This is not something that I necessarily wanted to do but my doctor pushed for it and on reflection, I believe it was used as a scapegoat instead of a genuine solution. There is a risk when taking the Pill that it can affect you mentally and alongside the daily mental struggles that come with the disease, this may not be the best treatment for many women.

The disease has such a large impact on your life physically, so it is not surprising that it can take its toll mentally as well. Growing up, I have missed out on school, sporting activities and even simple things such as being able to go to the shops. I had no explanation as to why I was in such a great deal of pain, so I was made to feel alone. It was only when I joined support groups that I realised how common it really is.

Luckily, the Government is starting to realise the importance of raising awareness about endometriosis and ensuring that women get a quicker diagnosis. People are putting up with this struggle for so long because it is a taboo topic — this needs to change.

People with endometriosis, whether at the start of their diagnosis, like me, or the end, suffer daily. So really, we are not ‘ovary-acting’, just opening a healthy discussion on the disease.