Endometriosis Awareness Month: symptoms, causes and treatment explained
This article was written by Dr Jana Pittman and Professor Jason Abbott.
Endometriosis (or ‘Endo’) is another tough card that some women are dealt with. Sadly, it’s not uncommon, with around 200 million women worldwide having endometriosis during their reproductive years. As March is Endometriosis Awareness Month, we’re taking the opportunity to shed some light on this common condition.
As you guys know I love being a Modibodi ambassador and feel privileged to write these blogs but when I saw this topic, I realised I am but a very small fish in this area. Luckily, I have access to the big guns who are paving the way in research around endometriosis. So, for this one, I interviewed my boss and PhD supervisor at UNSW Sydney, Professor Jason Abbott. He is a gynaecological surgeon at the Royal Hospital for Women and one of the world-leading experts in the endometriosis space.
Readers: you can’t get better than this.
Jana: Prof Abbott, what is endometriosis?
Prof Abbott: Endometriosis or ‘endo’ which is its colloquial name, is a condition where tissue that is similar to the lining of the uterus (called the endometrium) shows up in places it shouldn’t be. The normal endometrium is made up of two layers. The surface layer sheds each month causing menstruation and a base layer that is permanent and where the new surface layer grows from in the next cycle.
Endometriosis is similar but not the same as this tissue, and ends up in places such as the ovaries, fallopian tubes, bladder, bowel, and pelvic ligaments. It is a commonly held myth that this tissue ‘menstruates’ every time the woman does, but that is not correct – this is why the tissue is only similar to the usual lining of the tissue, but it does not act in the same way. The size of endometriosis deposits can vary from microscopic implants to large cysts (endometriomas).
Jana: What are the main and uncommon symptoms of endometriosis?
Prof Abbott: Symptoms vary between people and where the endometriosis deposits are located. Most commonly, symptoms include pelvic pain, back pain, menstrual issues, bowel complaints (for people with endometriosis, bloating is a common issue), painful intercourse, headaches and fatigue. For some women, the pain is cyclic with their periods but for others, it causes chronic daily pelvic pain. Symptoms can also be exacerbated if an endo flare up is triggered.
For these women, the pain often takes a huge emotional toll and can lead to mental health complaints. We also know that for about 1 in 3 women with endometriosis, their fertility can also be affected.
Jana: What causes it? Is endometriosis hereditary?
Prof Abbott: Ahh well that’s the magic question. We have spent decades trying to determine if endometriosis is heredity! The exact cause of endometriosis still requires further research, but genetic factors are important as daughters of mothers with endo are 7x more likely to have it themselves, showing that endo is hereditary.
We have also seen factors that likely ‘trigger’ the disease, including a faulty immune system failing to find and destroy abnormally growing endometrial deposits and retrograde menstruation (blood flowing backwards through the fallopian tubes into the abdomen) and environmental factors such as chemicals, bacteria and viruses and even the foods we eat. Importantly, what this shows is that endometriosis is not a single disease process but a group of similarly related problems that each require further exploration.
Jana: How is endometriosis diagnosed?
Prof Abbott: Firstly, we talk to you about your symptoms as your clinical history often raises suspicion. We will also do a physical examination feeling for tenderness in your pelvic muscles, the tissues around the uterus and sometimes we can even feel the ovaries or disease that is invading into the bowel or vagina. Often, you will have pelvic imaging studies such as a pelvic ultrasound – best done with a thin probe in the vagina if that is appropriate for the person since we can get very close to the tissues we want to see or an MRI. It is important to note that when these tests show disease, it is highly likely that it is endometriosis, but they can miss disease where the deposits are very small. We recommend that we reserve laparoscopy for treating endometriosis rather than only making the diagnosis. This is key-hole surgery where we use a camera to look for any endometrial deposits in the abdomen. If some are found, biopsies are taken to establish the diagnosis and it is always best that the disease is removed at the same time, so that only one surgical procedure is undertaken.
Jana: How is endometriosis treated?
Prof Abbott: Treatment can be conservative, use medicines, or involve surgery. It depends on your reason for wanting treatment. We know that 20-50% of women with infertility will have endometriosis, and the only options (apart from having regular timed intercourse) are surgery or IVF.
For women who are wanting to be pregnant, we can’t suppress their menstrual cycle with hormones, so these are the options that increase (but not guarantee) their chance of pregnancy. For those that suffer with pain we initially suggest taking regular pain relief (such as non-steroidal anti-inflammatories with paracetamol) and simple treatments like local heat, regular exercise and mindfulness.
Other medical options include hormonal control like using the oral contraceptive pill (OCP) or other hormonal tablets, hormonal shots (such as Depo-Provera), powerful medications that stop the menstrual cycle (by monthly injection or nasal spray) or an intrauterine device (Mirena). These try to reduce the number of periods and release of an egg (ovulation), which in turn aims to slow or stop endometriosis growth with lowering the level of oestrogen and other chemicals that increase disease growth.
Surgery aims to remove all disease and is most often cut out (excised), but the important thing is to get rid of the disease, whilst balancing the risk to other organs and maintaining fertility if the women want this. However, it can grow back and regularly women need a combination of therapies for symptom control and at different times of their life.
Jana: Why did you decide to dedicate your career to researching endometriosis?
Prof Abbott: As a young doctor, I worked with many senior doctors who treated women with endometriosis, and all used very different approaches and swore that the way that they treated the disease was ‘the only way’. 30 years later and I am still trying to find out that way! It was clear that we didn’t know very much about the disease, and I wanted to try and increase the amount of knowledge about the disease.
We have definitely made progress, but there is a long way to go. We are seeing more awareness, including the introduction of Endometriosis Awareness Month, more consistent treatments and importantly have identified the limitations of our treatments. I am lucky to work with an ever-increasing group of amazing clinicians, scientists, patients and advocates (including the government) to approach the problem with unity and a passion to uncovering the cause and, of course, the cure (or cures).
To learn more about endo, you can watch a great podcast with Prof Abbott here.
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