Women with endometriosis are disbelieved and held responsible for biological realities. Here’s what needs to change. 

My story

In December 2014, I was diagnosed with a borderline ovarian tumour – losing my right ovary – at the age of 25.

The ovarian mass was the size of a small baby. A traumatic ordeal that could have been prevented if I had not experienced medical gaslighting from various GP’s.

They ignored my symptoms. I visited the GP six times over four months, but I was constantly dismissed and asked, “Are you stressed?” “I think it could be irritable bowel syndrome.’”

Fast forward a few years, I underwent laparoscopic surgeries in 2018 and 2021 for severe endometriosis. As a young woman with ovarian endometriosis, I had the opportunity to preserve my fertility through IVF.

Understanding endometriosis

Endometriosis, a chronic, inflammatory disease that has no cure, can significantly impact a woman’s life physically and emotionally.

The condition comes with a high burden of comorbidities. Chronic fatigue, for example, is a common symptom of endometriosis, but is still invariably dismissed by the medical profession.

Like many other women in this community, it has taken many years to be acknowledged with this debilitating symptom.

The Department of Work and Pensions, government, educational and work establishments need to understand all the comorbidities of endometriosis.

It is important to recognise that women may experience difficulty in professional development. Endometriosis for many is unpredictable, impacting daily lives and financial independence. Some women will be able to work full-time. However, others may only manage part-time or not at all. Discrimination should not be happening via health assessments.

Employers should support their employees too. There needs to be more opportunities in the workforce for women to have flexible options – reduced hours, time for appointments and menstrual leave if needed.

We also need support for self-employed women and those unable to work but might be able to in the future.

Furthermore, universities, colleges and schools need to recognise that endometriosis is challenging for individuals and that everyone’s experience is very different – educational workshops are paramount.

The impact of endometriosis

Endometriosis can affect sexual relationships, family, friendships and social commitments. Fertility problems may arise and in some severe cases, infertility.

It is important that all endometriosis sufferers have access to fertility treatment if they wish -it should be a part of an endometriosis care package. Gaslighting and medical negligence should not still be happening.

According to Imperial College London, less than two per cent of medical research funding is spent on pregnancy, childbirth and female reproductive health.

Historically women’s health hasn’t received much funding, due to patriarchy, ignorance and misunderstanding. One could argue that if men had the condition, there would probably have been a cure by now.

Throughout history women have been forced into a culture of silence about their bodies and menstrual cycle – a systemic issue that has caused taboos around the world, resulting in stigma, discrimination and gender disparities.

The government and medical establishments, however, need to facilitate change, through public health campaigns, strong leadership, education and investment into high-quality medical training and research.

As science evolves, all medical professionals need to become more collaborative and holistic in their approach. Gynaecologists should not be performing endometriosis surgery outside of the specialist centres accredited by the British Society of Gynaecological Endoscopy (BSGE).

Access to early intervention – diagnostic tools, abdominal and transvaginal ultrasound, MRI, laparoscopy and robotic surgery – should also be imperative.

Recognising and addressing endometriosis early is key, as prolonged diagnostic delays can lead to the disease progressing, worsening symptoms and risking permanent organ damage.