The Invisible Battle: Endometriosis
Endometriosis is not just a “bad period”. It’s not an infection or cancer. It is a debilitating chronic condition that is still largely ignored, yet affects 1 in 10 women worldwide and an undetermined number of transgender and non-binary people (1). You heard us, that is a lot of people. So, the chances are, you know someone with endo. It is arguably one of the most common and devastating diseases that people have never even heard of. The question, “What is endometriosis?” has long been one of the trending health-related questions on Google. Fear not, we are here to answer all your endo-related questions and more.
What is endometriosis?
Endometriosis is a full-body, inflammatory condition where tissues that have similar properties to the innermost lining of the uterus, known as the endometrium, are found elsewhere in the body (2).
This endometrium-like tissue thickens during the menstrual cycle and eventually bleeds. As opposed to the endometrial tissue that exits the uterus through the vagina each month, the blood from displaced tissues has no way of leaving the body. Rather, it pools near the affected organs and tissues, irritating and inflaming them. This can result in pain, and sometimes the development of scar tissue that can form a web, fusing organs together.
What is the cause?
There is no proven cause for endometriosis (we know, we are just as mad about it). However, there are several theories as to what can cause the condition, one of which is that the tissue of the endometrium backs up into the fallopian tubes and abdomen, sort of as a “reverse menstruation” (4). Each theory does not fully explain how endometriosis appears and the actual cause remains unknown. You can learn more about the different theories here. It is also highly likely that certain genes play a role in predisposing people to the disease (5). Anyone can get endometriosis. While most common and often only depicted as a “women’s” issue, endometriosis occurs in trans and non-binary people and has even been found in some cis-gendered men (3).
What are the symptoms?
Endometriosis is a highly individual condition. As the way that the endometriosis grows differs from person to person, the range of symptoms, and extent of the disease will also vary (6-8). It is important to note here that the amount of endometriosis does not always correspond with the intensity of symptoms. You could have mild endo and severe symptoms or vice versa! The most common symptoms (affecting around three out of four sufferers) relate to pain, whether that be pain with periods, outside of periods, with sex, bowel movements or urination (9).
Endometriosis UK highlights some of the other symptoms that have been reported:
| Pain symptoms | Bleeding symptoms | Bowel and bladder symptoms | Other symptoms |
|---|---|---|---|
| Painful periods | Heavy periods with or without clots | Painful bowel movements | Tiredness/lack of energy |
| Pain on ovulation | Prolonged bleeding | Bleeding from the bowel | Depression |
| Pain during an internal examination | 'Spotting' or bleeding between periods | Symptoms of irritable bowel (diarrhoea, constipation, bloating - particularly during your period) – often referred to as “endo belly” | Anxiety |
| Pain during or after sex | Heavy periods | Pain when passing urine | Back pain |
| Pelvic pain | Loss of 'old' or 'dark blood' before period | Pain before or after passing urine or opening bowel | Leg pain |
The Reality of Living with Endometriosis
The reality of living with this condition, however, is so much more than just a list of symptoms or simplified clinical definition. Endometriosis is often referred to as a "full-body condition" because its effects extend beyond the reproductive organs, impacting various aspects of the body and life.
Endometriosis can impact quality of life in a variety of ways, including:
- Chronic pain
- Fatigue
- Mental health concerns (depression and anxiety)
- Negative body image
- Difficulties with sex and relationships
- Problems conceiving (infertility)
- Difficulty fulfilling work and social commitments
What pain is normal?
Let’s clear a few things up. Any searing, throbbing, stabbing pain that makes it impossible to function throughout your day is not normal. Any severe or debilitating pelvic pain, abdominal pain, pain during sex or when moving your bowels or passing urine, is not normal. Any feelings that you are going to vomit, pass out or need to miss school or work due to pain are not normal. If you do have these symptoms or if your pain isn’t managed with over-the-counter pain relief, it is essential that you speak with your doctor about the possibility of having endometriosis.
Let’s stop neglecting pain
Ever been told to just “get on with it”, “take a pain killer” or “push through it”? A 2004 study found that health professionals often trivialise endometriosis symptoms as “typical period pain” (10). Whether it is from a doctor, family or friends, there has long existed a harmful culture of normalising and dismissing period pain as well as other less-than-pleasant symptoms. This means that many people, including some well-known celebrities, grow up suffering without realising that their experiences are not normal (11, 12). Even when they do discuss their pain, they are not always believed. Take, for example, the fact that women’s pain is treated less aggressively than men’s, even when they rate it more severely (11). These struggles of getting help, feeling heard and receiving a diagnosis are part of a larger problem known as the gender health gap (13).
Some quick facts:
- Endometriosis does not necessarily equal infertility.
- Your pain is real and valid.
- Endometriosis can occur anywhere in the body (in rare cases, it has even been found in the lungs)
- Some people with endometriosis may not have symptoms
- Pregnancy or hysterectomy are not “cures” for endometriosis
- If your mother or sister has endometriosis, you may have an increased risk (14)
- People with endometriosis have a higher risk of mental illness such as depression and anxiety
Reaching a diagnosis
It takes on average eight years between the onset of symptoms and a diagnosis of endometriosis (15). Let's just take a moment to grasp the gravity of that statistic…that is a long time of suffering!
Diagnostic delays may be due to a multitude of reasons including medical dismissal, limited resources, low prioritization of the condition, suboptimal diagnostic techniques and low knowledge and public awareness (we still don’t even know the cause!) (16, 17). Often, the broad symptoms of endometriosis mean that healthcare professionals cannot easily diagnose it and that individual sufferers have limited awareness of the condition (18). Given that endometriosis pain can sometimes be incapacitating, this delay can severely affect aspects of one’s life (19).
While surgery (a laparoscopy) is the only way to make a definitive diagnosis of endometriosis, doctors can give a clinical diagnosis of “suspected endometriosis” based on symptoms and a physical examination (20). There is also increasing research that an ultrasound can help make a reliable diagnosis in some cases.
Treatment
There is no “cure” for endometriosis. Rather, treatment focuses on managing symptoms and improving quality of life. It is important to recognise that everyone's experience and treatment choices are going to be different. While there are options for surgery, hormonal medications and painkillers that can relieve some symptoms, at this point, endo remains an incurable condition. Many people also turn to complementary therapies, nutrition, and emotional support. It is indeed possible to thrive with endometriosis.
What steps should I take if I suspect endometriosis?
- Familiarise yourself with the symptoms of endometriosis. Suffering from severe or debilitating pain that can’t be relieved by over-the-counter anti-inflammatories is not normal.
- Document your menstrual cycle and symptoms. There are several apps available, or you can use a diary.
- Ask your GP for a referral to a specialist endometriosis gynaecologist
- Write down your questions prior to your doctor’s appointment and bring these with you
- Get a support team of friends and family together.
- If you feel that your concerns aren’t addressed or that you aren’t being listened to, seek another opinion!
Final word:
If you are struggling with your period and/or pain that disrupts your day-to-day life, know that you are not alone and that there is help available. You aren’t broken, you aren’t a burden, and you should not have to suffer.
Resources on endometriosis:
- Social media resources and support:
- Apps for tracking and recognise symptoms of endometriosis
- Personal stories with endo:
- Fact sheet on supporting people with endometriosis: