Time to speak up about endometriosis

Posted: 07/03/2018

March is Endometriosis Awareness Month and its aim is to raise awareness globally of a disorder that affects an estimated 176 million women worldwide. In the UK specifically, an awareness week organised by Endometriosis UK is taking place between 3 and 11 March 2018 to bring attention to a condition experienced by on average one in ten women of reproductive age.

So despite these alarming statistics, why is there so little known about it?

Emma Beeson, associate in the clinical negligence team who deals with numerous cases relating to gynaecological and urogynaecological issues, discusses why it is important to raise awareness of this condition: “As a clinical negligence lawyer, I have represented a number of women who have received negligent care for gynaecological problems or suffered unnecessary delays in treatment of serious gynaecological or urogyanecological conditions. One thing I have learnt from these cases is that there is still such a taboo regarding some issues relating to women’s health.

“Last year I spoke at the Women of the World Festival about the type of cases I deal with. I posted an article on the topics I discussed and a male colleague said he was interested to read it, but admitted he was afraid to show his interest on social media. I asked why this was and he explained that he was worried what people would think. This baffled me. Why should it be strange that a man is supporting awareness of issues relating to women’s health?

“Endometriosis is something which affects a significant proportion of women. Isn’t it right that men should be aware of the condition just as much as women? Should it not be taught on the curriculum in schools? Should sexual education not include further education for both boys and girls about issues of women’s health such as the impact of pregnancy, ectopic pregnancies and conditions such as endometriosis? With better education comes better understanding and potentially earlier diagnosis.

“Figures suggest it takes an average of 7.5 years from the onset of symptoms for a diagnosis of endometriosis, which causes concerns that this delay could lead to long term damage. I deal with cases where the delay in treatment has been negligent and there is evidence that an earlier diagnosis should have been made which could have significantly altered the outcome for my clients. In some cases the delay is not the result of any negligence, but a better understanding of the condition could help lead to an earlier diagnosis and allow patients the power to obtain their diagnosis rather than being reliant on doctors.”

What is endometriosis?

Endometriosis is a disorder that occurs when tissue behaving like the lining of the womb develops in other parts of the body outside the uterus, causing pelvic pain. It can also appear in other organs such as the vagina, liver, brain and lungs.

This chronic condition has the same symptoms as menstruation, hence why doctors often do not give due consideration to a patient’s complaints, assuming that it is just exaggerated period pain.

According to the National Institute for Health and Care Excellence (NICE), women usually wait from four to ten years to visit a doctor and ask for help with this kind of pain. Why is this? Is it because of the same misconception some doctors have that this pain is to be expected, or is it because there is a fear about discussing menstruation and it is therefore difficult for some women to gauge whether or not the symptoms experienced are normal?

In September 2017, NICE released new guidelines warning doctors to be more cautious about their approach to female patients with consistent pain symptoms including head pain, which can drive even to the loss of consciousness, nausea, back pain, vomiting, fatigue, pain during sexual intercourse and blood in the urine. These symptoms can get worse before and during the menstrual cycle and women can often feel better towards the end of their period.

The pain caused by endometrioses can be debilitating and this has recently been brought to light in the media by the story of actress and writer of the HBO series Girls, Lena Dunham. She spoke out about her decision to have a hysterectomy in her early 30s after suffering from crippling pain due to endometriosis for over a decade. Lena explained how her pain had become unbearable and she felt her career and relationships were suffering as a result. Her story seeks to defy the taboo of female menstruation and fertility.

She highlighted how a hysterectomy was the right decision for her but is not necessarily right for other women, and so it is important to consider the alternative treatments available. She also emphasised that a hysterectomy is not a cure for endometriosis. There is no cure. It is therefore important to understand how symptoms such as pain can be managed.

Treatment for endometriosis

Treatment is of course dependent upon a number of factors such as age, severity of symptoms, desire to have children, the severity of the condition, previous treatment, the side effects of medication and risks.

Hormonal treatment such as the combined oral contraceptive pill or the Mirena IUS can be used, but the side effects need to be borne in mind, including acne, depression, bloating, breast discomfort, irregular bleeding and nausea.

Surgery is a more radical option as it is irreversible. The aim of surgery is to destroy the deposits of endometriosis and while it can provide relief from symptoms, they can recur in time. Surgical procedures include a hysterectomy (removal of the womb which can be done with or without removing the ovaries) or an oopherectomy (removal of the ovaries).

There are various forms of pain management that can assist, including painkillers, low dose antidepressants used for chronic pain, transcutaneous electrical nerve stimulator (TENS) machines, physiotherapy, superior hypogastric block (an injection of local anaesthetic and steroid around the sympathetic nerves which supply the organs of the pelvis), acupuncture, homeopathy, hypnotherapy, osteopathy, Reiki, reflexology and yoga.

There has also been substantial research into the connection between diet and endometriosis, offering advice on the types of food to avoid and eat more of in order to help stop endometriosis developing or reduce symptoms.

Whether it is discussing the cause of endometriosis, what the condition is, the symptoms, treatment or personal stories of how it has been managed, the key is to raise awareness and to break the taboo on discussing an issue that affects women everywhere.

Return to news headlines