Endometriosis: challenging the misconceptions of an invisible illness
Written By Charvi Varampati
Endometriosis — a condition affecting an overwhelming one in ten women and yet still unknown by many.
What is endometriosis and what are the risk factors?
Endometriosis is when cells similar to the lining of the uterus (endometrium) grow outside this lining, mainly in the ovaries and the fallopian tubes. It can also grow in nearby organs, particularly affecting the bladder and the bowel. It is usually characterised by sharp pain between and during periods. However, endometriosis may result in mild pain in some cases.
The exact cause of endometriosis is not known. Some of the main risk factors include higher levels of oestrogen as well as heavy and prolonged periods. Oestrogen is a growth factor so it can stimulate the growth of endometrial tissue outside the uterus and the levels of oestrogen peak during ovulation in the menstrual cycle. These risk factors can lead to a higher likelihood of endometriosis in women who haven’t given birth. Although oestrogen levels increase during pregnancy, the levels significantly drop after childbirth (due to the removal of the placenta, the main source of oestrogen during pregnancy) and breastfeeding can also reduce oestrogen secretion by reducing the activity of the ovaries. Additionally, menstrual cycles stop in pregnancy so there is no ovulation, reducing oestrogen levels - however, for a woman who hasn’t given birth, the increased menstrual cycles can lead to more endometrial tissue deposition outside the uterus.
Misconception 1: Endometriosis only affects women in their 20s or 30s
Although endometriosis may be very common for women in this age group, it is worth noting that endometriosis can develop post-menopause and in young girls. According to the WHO, endometriosis can start as early as a girl’s first menstrual cycle. Furthermore, endometriosis can affect anyone who is assigned as female at birth, so it is vital to recognise the effects of the condition on transgender men.
Misconception 2: Endometriosis only has physical effects on an individual
Did you know that the physical pain from the condition is only a part of the whole picture? Stigma around endometriosis is frequently faced by individuals with the condition. Stigma encompasses negative ideas, which may lead to discrimination from society and family. But why is there stigma?
Pain is subjective and is an intangible concept. Therefore, any unusual pain during the menstrual cycle is often dismissed as being a consequence of heavy periods. This means that there is an issue with underdiagnosis and misdiagnosis of endometriosis as there is an unjust normalisation of women’s pain in society - women are expected to endure any pain associated with their periods so their concerns may not be sufficiently explored. Harmful stereotypes labelling women as ‘hormonal’ and ‘overdramatic’ further contribute to this issue. As well as this, the limited awareness about endometriosis can lead to doubt and assumptions about the exaggeration of symptoms, which can be very harmful for the patient’s mental health. This limited awareness may arise from insufficient training about how to recognise and treat endometriosis and gender biases in research. These biases can lead to the underrepresentation of women in clinical trials and inadequate research of endometriosis, evidenced by the fact that the cause of endometriosis is still unknown.
A study conducted in 2023 by the The New School for Social Research, New York states that nearly 80% of adolescent girls in the UK had experienced menstrual symptoms but hadn’t consulted a health professional. 27% of these girls said they were too embarrassed to discuss the topic.
Endometriosis can negatively impact the day-to-day activities of individuals, which may lead to them missing days of school or work. For individuals living in more deprived areas, there may be reluctance to take days off to visit general practice or the emergency department. As a result, any symptoms may be exacerbated. This is an unfortunate example of the inverse care law (that those who require care the most are less likely to receive it).
Infertility is another potential consequence of endometriosis and it affects as high as 30-50% of women with endometriosis. Of course, this delves into a whole different world of societal pressures of having children. This is much more prevalent in families with a lower socioeconomic status and may be due to cultural and religious beliefs and additional pressure from relatives. Women in these families are expected to conform to traditional gender roles of bearing children and prioritising their family. Limited opportunities to access education and healthcare may exacerbate these stereotypes as there may be less awareness of fertility treatments such as IVF. However, IVF is an expensive treatment and could further deter the women in these families from seeking suitable ways to help them conceive.
These are all private and sensitive topics so women may feel less comfortable sharing their experiences at first. Hearing the experiences of other patients can really open up the discussion and validate the patients’ own experiences - charities supporting women with endometriosis can help make this more accessible. The leading charity in the UK for endometriosis is Endometriosis UK. They offer a range of support services that are inclusive to all - support groups, telephone helplines, web chats and a symptom checker that can directly send a letter to the patients’ GP if they seem to have many symptoms indicative of endometriosis.
Misconception 3: Endometriosis has a single cure
Diagnosis of endometriosis can be delayed due to the symptoms being similar to many other conditions such as fibroids, adenomyosis and inflammatory bowel syndrome. Fibroids are non-cancerous growths of muscle and fibrous tissue that grow in the uterus wall. Adenomyosis causes the uterus lining to grow into the muscle wall of the uterus. Inflammatory bowel syndrome (IBS) refers to a group of conditions that involve inflammation of the small intestine (including Crohn’s disease) and can cause severe abdominal pain.
After considering the patient’s symptoms, laparoscopy is used to confirm the diagnosis - this involves passing a camera through a small cut on the abdomen. The pain experienced by individuals tends to be chronic so analgesics (like paracetamol and ibuprofen) are often prescribed. Some individuals are given hormone therapy, such as the combined contraceptive pill. However, many patients do not respond to this treatment option so subsequent surgery may be needed. These surgeries may include removing cysts (fluid-filled sacs caused by endometriosis) or removing areas of unusual cell growth. In more extreme cases, other surgeries may be used, such as hysterectomies (removal of the uterus), oophorectomies (removal of the ovaries), or removal of the bowel or bladder if these have been affected.
Holistic care is a significant principle of providing patient-centred care so the mental wellbeing of patients should be considered throughout by checking in with the patient regularly to assess how endometriosis may be affecting their day-to-day activities. It is also important to explore the patients’ feelings regarding their diagnosis and how they are coping. Another factor to consider is the patient’s social history (their relationships with family and friends) and whether they have had any mental health issues in the past as these may be aggravated by any chronic pain associated with endometriosis.
What can we do now?
Since endometriosis is such a debilitating condition that affects so many people, it is very important to raise awareness about it. If period cramps seem to hurt more than usual, we should encourage visiting general practice to explore this further.
Additionally, we should work on tackling health inequalities to allow earlier diagnoses which can be managed more effectively. This is particularly important as health inequalities can lead to a limited awareness of health services provided so many individuals may not receive the care they require. In many cases, the diagnosis is made very late so it becomes much more difficult to manage the condition as there is a risk of permanent damage to organs such as the bowel and the bladder.
Many women and transgender men with endometriosis feel that they do not receive the support they require, evidenced by the increase in personal stories on the news in the past few months in an effort to enable this serious condition to receive broader recognition. Supporting charities such as Endometriosis UK by volunteering with them and fundraising can bring endometriosis into the spotlight to encourage more patients to speak up about endometriosis.
Evidently, we need to reduce the stigma around speaking about women’s health and the health of transgender men. How can we do this? The Royal College of Gynaecology has listed 14 organisations determined to make a difference to women’s health such as Wellbeing of Women. This is an imperative step in ensuring that endometriosis is more extensively researched to enable better diagnostic rates and treatment capabilities in the future.
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