Endometriosis

About endometriosis

Endometriosis is a chronic health condition where tissue similar to the lining of the uterus grows outside of it in other parts of the body. One of the main symptoms of endometriosis is pelvic pain that interferes with a person’s daily life on or around menstruation.

Currently, the only way to receive a conclusive diagnosis of endometriosis is via surgery (usually a laparoscopy) and a positive test result on tissue samples obtained during the procedure.

However, there is now a growing recognition among experts that requiring a surgical diagnosis is usually associated with a significant delay, is invasive and may not be accessible or practical for those experiencing symptoms. Therefore, many health professionals are now starting to treat problematic symptoms, like pain, without a formal diagnosis of endometriosis - which means that more women can access care sooner.

Unfortunately, like all chronic conditions, there is no cure for endometriosis and symptoms require ongoing management.

The WHO estimates that endometriosis affects about 1 in 10 women worldwide. In Australia, recent estimates indicate that 1 in 10 women will have endometriosis by the age of 45.

What are some common symptoms and problems associated with endometriosis?

While the nature and impact of symptoms vary, one common symptom across the condition appears to be chronic pain. Lots of research tells us that pain has the biggest impact on a woman’s wellbeing, everyday activities and their ability to manage their condition.

Common types of pain in endometriosis include:

Pain during menstruation
Pain during sex
Pain with bodily functions eg bowel movements and urination

Other common problems related to endometriosis can include:

Difficulties with fertility
Fatigue

What are some common conditions associated with endometriosis?

Unfortunately, women with endometriosis often experience a range of other conditions alongside endometriosis. These conditions can make it even harder to manage the impacts of endometriosis and pain on their lives.

Some common conditions include:

IBS
Depression
Adenomyosis
Fibromyalgia
Chronic Fatigue Syndrome
Chronic Pelvic Pain
Chronic Pain
Anxiety
Migraine/Headache
And many, many more.

What are the main symptoms of endometriosis-related chronic pain?

Women with endometriosis can experience a whole range of symptoms. However, the symptoms of endometriosis-related chronic pain often fall into three main categories.

Physical Symptoms – The pain itself, headaches/migraines, fatigue, low energy levels, reduced concentration, memory difficulties, changes in sleep

Behavioural Symptoms – Reduced activities, avoidance, doing fewer pleasurable activities (eg doing the “essentials only”) and getting into an overdoing-underdoing activity cycle

Thought Symptoms – Thoughts about the nature of your pain, your ability to cope, and how this might impact your relationships. Self-criticism, self-doubt and worry are also common.

Research shows that poor quality of life and poor emotional wellbeing are not inevitable consequences of having endometriosis. We know that pain related to endometriosis is real and we believe that people can successfully manage their pain and limit its impact on their quality of life.

When faced with very challenging and difficult health conditions we try to work out what to do and how to deal with it. Sometimes the things we do are helpful and sometimes they are not – despite our best intentions.

We think that it is essential for people with endometriosis to have good information about their condition, its symptoms and chronic pain. We also think that learning practical, proven and helpful strategies to manage wellbeing and the impacts of pain is essential. We believe these strategies can be beneficial at any stage of a person’s treatment journey.

Please note that it is always important to see your doctor as a first step for a medical assessment to rule out any malignant or treatable causes for your pain. If your pain can be treated it should be. Maintaining a good working relationship with your doctor is essential to the management of all medical conditions.

What are the impacts of endometriosis and chronic pain?

Chronic pain can impact people’s ability to work, manage simple day-to-day tasks and enjoy social activities. As symptoms typically occur during adolescence and early adulthood, pain can affect schooling, choice of career and other important life decisions. Many women also report needing to make significant adjustments to work around menstrual pain.

These limitations, as well as the experience of pain itself, often has a big impact on a woman’s emotional wellbeing and overall quality of life. Research indicates that women who experience pain are at a higher risk of having anxiety, depression and a poorer quality of life. Understandably, many women also struggle with self-esteem, guilt, and uncertainty about their future. This is important to note, because research shows that unmanaged anxiety and depression can make pain even more challenging and difficult to live with.

Fears of further aggravating the pain, having to live with pain and worrying about whether the pattern of pain will change over time are common. Many women experience very understandable concern about potential fertility issues. Romantic relationships can also be affected and it is common for people to feel hopeless and helpless from time to time.

The good news is that there are practical strategies that people can use to manage their pain, anxiety and depression, which can limit the impact that pain has on their life and wellbeing.

What are the treatments for chronic pain related to endometriosis?

If the cause of pain can be treated it should be. But, we know that endometriosis affects each woman differently and some will continue to experience pain, whether it be at certain points during their menstrual cycle, or more persistently. Even when we know that our pain is caused by a medical condition, it is not always possible for the pain to be permanently relieved through medical procedures or via medications. This is very regrettable.

The more pain persists despite treatment and the longer it lasts, the more important it becomes to learn to manage the pain and your emotional wellbeing. Research suggests that people with chronic pain can benefit from learning about their pain, how best to manage it and how to maintain emotional wellbeing despite pain.

For further information about treatment options and assistance you can:

Talk to your General Practitioner
See a Psychologist, Psychiatrist or another mental health professional
Or, you can find out about our eCentreClinic Courses for women with endometriosis, see here.