‘What is endometriosis?’ Most of the readers of this article will probably be thinking this and, I have to admit, a few months ago I would’ve asked myself the same question. Despite affecting around 1.5 million women in the UK alone and over 176 million worldwide, endometriosis is one of the most under-treated and under-funded diseases, frequently unidentified by doctors. Endometriosis affects any woman of reproductive age and is caused when cells found in the lining of the uterus develop in other areas of the body: fallopian tube, ovaries, bowel or stomach. This causes blood to accumulate in these areas, unable to escape during the menstrual cycle, resulting in internal bleeding, the breakdown of blood tissue and inflammation. Consequently, periods can involve heavy blood flow and be extremely painful.

Unfortunately, there is no known cure, however, measures can be taken to reduce the pain experienced. In more severe cases surgical procedures are undertaken to remove the diseased tissue. Symptoms of endometriosis include fatigue, constant pain, depression, problems in sexual relationships and can sometimes make it difficult to conceive. This greatly decreases the quality of life of the sufferer and often causes women to miss work, causing great inconvenience.

So, why does endometriosis remain so misunderstood despite the rise in known cases and pain it causes to so many women? For a lot of these women their pain is often normalised by society. They are told that painful periods are part of being a woman and something millions of others have to deal with too. This leads many to believe they have to accept their pain and therefore do not seek help from a doctor, forcing them to suffer in silence. However, in a lot of cases it is not just the sufferers who are ignorant but the doctors themselves. The lack of clinical training surrounding chronic pain leads to a misdiagnosis in many cases, and it can take up to 10 years for the patient to receive the correct diagnosis.

This topic is one close to my heart, as recently, my friend, Imogen, underwent surgery to treat endometriosis. After being shocked by the lack of understanding of endometriosis I decided to interview Imogen to gain an insight into her personal experience. Imogen is 18 years old and currently completing her final year of A-levels at college.

I asked Imogen when she first realised she needed to seek help. She told me that despite experiencing painful periods for many years, she ‘never thought much of it.’ It was only in January 2019 when the pain worsened, causing her to miss college, that she realised something was wrong, it wasn’t just bad period pains. Imogen’s mother also suffered from endometriosis, as it can be passed down genetically, and she encouraged Imogen to seek help from a doctor.

When asked how helpful doctors were during her diagnosis, Imogen informed me she was diagnosed ‘relatively quickly compared to the average diagnosis time.’ However, she was treated by three different doctors between January and August 2019 before they were able to diagnose her with endometriosis. She told me that she was given an internal examination by her first doctor, however, they ‘didn’t really say much about it being endometriosis,’ and only prescribed her with stronger pain killers. They also told her ‘not to worry about [surgery] for many years,’ highlighting the lack of understanding of endometriosis, even from qualified doctors.

Imogen was able to give me a full account of the symptoms she experienced and how they affected her daily life. She described that her symptoms included ‘not being able to walk upright, being sick, lack of concentration and pain during sex.’ On top of this, she would experience severe pains ‘a week before, during and about a week after [her] period,’ which meant that there was only one week each month which was pain-free, causing her great suffering. These symptoms meant she had to miss a lot of college, sometimes up to weeks at a time, leaving her with large amounts of catch-up work. During her end of year exams, which were necessary for predicting her grades when applying to universities, Imogen’s pain left her unable to revise. This emphasises how endometriosis greatly affected her daily life and caused her great pain.

I asked Imogen if she thought there should be more awareness about endometriosis, to which she replied, “Completely. Not one of my friends had ever heard about it before, even though it’s as common as diabetes.’ I was one of those very friends who had never heard of endometriosis and I was shocked to find out just how common it is, despite there being so little awareness about it. Imogen also highlighted her belief that endometriosis should be talked about during sex education to encourage women to seek help more quickly and so that less women would remain undiagnosed for so long, which I completely agree with.

I hope through this article I have been able to spread greater awareness of endometriosis, even if it is just a little, as this is vital for the healing process. Women should not have to accept the pain they are in and should know the signs to look out for in order to seek help quickly. They deserve to feel as though doctors understand their symptoms and be taken seriously, without their pain being minimised or dismissed.