Endometriosis: When the Whole Body Feels it

By Dr Tonia Mezzini

When we talk about endometriosis, the conversation often starts with painful periods. But for many women, endometriosis is so much more than that.

It can affect your energy, digestion, bladder, sex life, fertility and emotional wellbeing. Because symptoms can look different from one woman to another, it can sometimes take years to understand what is really happening.

As a doctor, one of the things I most want women with endometriosis to know is this: your symptoms are real, and you deserve to have them taken seriously.

What is endometriosis?

Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside the uterus. It most commonly affects the pelvis, but it can involve other areas of the body too.

This tissue can respond to hormonal changes throughout the menstrual cycle, contributing to inflammation, pain and, over time, scar tissue and adhesions.

Importantly, the extent of endometriosis doesn't always reflect the amount of pain someone experiences. Every woman's experience can be very different.

Endometriosis can affect more than your period

Painful periods are one of the most recognised symptoms, but there are many others, including:

• Pelvic or abdominal pain
• Pain before, during or after your period
• Pain during or after sex
• Bloating and changes in bowel habits
• Pain when opening your bowels
• Bladder pain or changes in urination
• Fatigue
• Heavy or irregular bleeding
• Lower back, hip or leg pain
• Difficulty becoming pregnant

Less commonly, endometriosis can affect areas outside the pelvis, including the diaphragm and lungs, sometimes causing symptoms that follow a cyclical pattern.

This is why I think of endometriosis as a condition that can affect the whole person, rather than simply being a gynaecological problem.

The impact on everyday life

Living with ongoing pain or unpredictable symptoms can be incredibly tiring.

You may find yourself planning your life around your cycle, cancelling plans, taking days off work, avoiding exercise or worrying about whether sex will be painful.

And there can be an emotional burden too. When severe period pain is repeatedly dismissed as "normal", or when unexplained bowel and bladder symptoms come and go with your cycle, it can be frustrating and isolating.

If this sounds familiar, please know that you are not being dramatic. Pain that interferes with your everyday life deserves attention.

How can endometriosis be managed?

There isn't one treatment that works for every woman. Management needs to be individualised around your symptoms, stage of life, fertility plans and what feels right for you.

Treatment may include hormonal medication, pain relief, surgery or a combination of approaches. Some women also benefit from pelvic floor physiotherapy, pain management and psychological support.

I also encourage women to look beyond treating the pain alone.

Look after your whole body

Good sleep, regular movement and finding ways to manage stress can support your overall wellbeing. This doesn't mean you need to push through pain or follow a strict lifestyle plan.

Some days gentle movement may feel good; other days rest may be what your body needs. Listening to those changes isn't a sign of weakness.

Pay attention to your pelvic floor

Endometriosis and persistent pelvic pain can sometimes affect the pelvic floor muscles.

If you experience pain with sex, bowel movements, urination or ongoing pelvic discomfort, a pelvic floor physiotherapist may be able to help you understand what is happening and develop strategies to reduce pain and improve function.

Don't forget your sexual health

Pain during sex is common with endometriosis, but it isn't something you should simply have to tolerate.

There are physical and emotional factors that can contribute to sexual pain, and many can be managed. This may include treating the underlying endometriosis, pelvic floor therapy, using a suitable lubricant or vaginal moisturiser, and having open conversations with your partner and healthcare team.

Your comfort matters.

Keep track of your symptoms

A simple symptom diary can be surprisingly helpful. Note when your pain occurs, along with bowel and bladder symptoms, bleeding, fatigue, sexual pain and anything else you notice throughout your cycle.

This can help identify patterns and give your doctor a clearer picture of what you're experiencing.

When should you see a doctor?

If period pain regularly stops you from doing the things you want or need to do, it's worth talking to your doctor.

The same applies if you have persistent pelvic pain, pain during sex, significant bowel or bladder symptoms, unexplained fatigue or difficulty becoming pregnant.

You don't need to wait until the pain becomes unbearable.

Diagnosis may involve discussing your symptoms, an examination and imaging such as an ultrasound or MRI. In some circumstances, surgery may be recommended.

If you feel that something isn't right, keep asking questions. Your symptoms are important information.

You don't have to manage it alone

One of the most important things I can say to women living with endometriosis is that management isn't just about getting through the next period.

It's about looking at your health as a whole and finding ways to make life more comfortable, manageable and yours.

There may be periods when your symptoms are better and periods when they are harder. Treatment may need to change over time, and that's okay.

Please be kind to yourself through that process.

If you think you may have endometriosis, or you're living with symptoms that aren't being adequately managed, speak with your GP or a healthcare professional experienced in endometriosis and pelvic pain.

You deserve to be listened to, supported and treated with care.

For more information, please visit The Pelvic Pain Foundation of Australia
https://www.pelvicpain.org.au/

Dr Tonia Mezzini
Sexual Health Physician