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Living with endometriosis

Endometriosis can affect your physical health and emotional wellbeing. It may also impact your relationships and sexual desire. It’s important to remember you’re not alone. It can be hard to talk about endometriosis and how it affects you. But when people in your life understand the condition, they are better able to support you through your ups and downs.

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Physical health

A healthy lifestyle may not reduce the severity of your endometriosis, but it is important to be as healthy as possible when managing this condition.

Physical activity

Physical activity helps many women with endometriosis.
Exercise can:

  • release feel-good chemicals that reduce your awareness of pain signals
  • reduce inflammation
  • relax your pelvic floor muscles
  • improve your range of movement around your hips and pelvic area
  • improve your mood and help with symptoms of anxiety and depression
  • reduce fatigue
  • help with constipation, bloating and bowel pain
  • protect against other diseases and health issues (e.g. cancer, diabetes and heart disease).

Sometimes physical activity can have side effects (e.g. a pain flare), so it’s important to break your exercise into small sessions throughout the day or try different types of activity like walking or yoga. Aim to do 20 to 30 minutes of exercise most days of the week. If you haven’t done any exercise for a while, ease into your exercise program and gradually build up your fitness levels.

Pelvic floor physiotherapy

A pelvic floor physiotherapist can help you to reduce pelvic pain symptoms. They will assess your pain and teach you gentle stretches and exercises. You do not need a doctor’s referral to see a pelvic floor physiotherapist.

Sleep

Quality sleep will help your immune system to function at its best.

Try to:

  • have regular sleep and waking times
  • reduce or stop drinking alcohol and coffee
  • avoid eating heavy meals late at night.

Diet

While there is no direct evidence that nutrition influences endometriosis, a healthy diet is important for overall wellbeing. This includes lots of plant-based foods (e.g. fruit, vegetables, nuts, seeds, legumes) and fish. Fish oils (omega-3 fatty acids) in dark fish, such as tuna, may help with pain relief.

Getting enough magnesium, vitamins B1 and B6, and consuming a low-fat vegetarian diet may also help reduce pain.

If you experience bowel symptoms, learning what foods may trigger these symptoms can be helpful. Keeping a food diary is the best way to track how your diet affects you. If you find you are sensitive to certain food types, ask your doctor to refer you to a dietitian with experience in this area.

Emotional wellbeing

Living with endometriosis can affect your emotional wellbeing, especially if you experience pain. Depending on your diagnosis and situation, you may have different emotions, ranging from shock and anger to sadness and depression.

It takes an average of seven years to get a diagnosis of endometriosis. This is a long time to suffer without knowing the cause or getting the right treatment. When you get a diagnosis, you may feel relieved or you may feel worried about the journey ahead, especially if you plan to get pregnant in the future.

Your feelings may vary depending on:

  • the severity of your symptoms
  • how long you’ve had symptoms
  • how long it’s taken to get a diagnosis
  • your treatment options
  • your stage of life
  • your support networks.

Body image

Body image is the way you think and feel about your body.

Some women with endometriosis have a negative body image due to physical symptoms such as pain, fatigue, bloating, painful sex, irregular periods and bladder and bowel problems.

If your body image is negatively affecting your emotional wellbeing, seek help from a counsellor or psychologist who specialises in endometriosis and body image.

Stress

The symptoms and pain of endometriosis are often unpredictable and distressing. It can be especially stressful and frustrating prior to diagnosis, as many women are misdiagnosed or told their period pain is normal and that it will get better as they age. Finding a doctor who listens and understands can make a huge difference.

Too much stress, particularly over a long period of time, can take its toll on your health and wellbeing. For example, ongoing stress can cause physical reactions such as nausea, diarrhoea, overeating and undereating.

It’s important to understand what is causing you stress and find ways to manage it.

For example:

  • try gentle yoga or mindfulness therapy
  • find time in your day to do things you love
  • seek help from a psychologist or counsellor if needed.

Anxiety

Women with endometriosis may experience anxiety. Anxiety involves extreme feelings of fear and worry. Physical symptoms might include a racing heart, rapid breathing and sweating. Psychological symptoms can include worry, over-thinking things and avoiding situations. Anxiety can lead to a loss of confidence and avoidance of people and places.

Read more about anxiety.

Depression

Some women with endometriosis get depression. Depression is more than feeling sad. It involves constant and intense negative thoughts and feelings. If you have depression, you might:

  • feel tired all the time
  • lose confidence
  • lose interest in things you used to love doing
  • find it hard to concentrate
  • have different eating and sleeping patterns.

When to get help

Knowing when to ask for help is important and can assist in understanding and coping with endometriosis.

If you often feel sad or anxious, you can ask your doctor for a referral to see a psychologist or counsellor. You should be able to get a Medicare rebate for a set number of sessions with psychologists and allied health professionals.

You can also find an endometriosis support group in your area. It can be helpful to talk to other women going through a similar experience. Visit Endometriosis Australia to find a support group near you.

Relationships and sex

It’s common for women with chronic pain to have a lowered sexual desire (libido).

Sexual desire varies from woman to woman and can be influenced by different factors. For example, your health, stress levels, mood and relationship.

Many women with endometriosis experience pain during sex. This pain is often deep in the vagina but can also be near the vaginal entrance and in the lower tummy. Pain with sexual intercourse can come from endometriosis lesions, an overactive pain system and overactive muscles (including pelvic floor muscles, which go around the vagina). Lifestyle factors can affect how the pain is experienced. For example, stress and poor sleep can make the pain feel worse.

When you experience pain, your pelvic floor muscles can be hard to relax. This can cause more pain and, understandably, a lowered sexual desire.

If you experience pain during sex, don’t just put up with it. The good news is, there are many treatment options available. And remember, you can enjoy intimacy in many ways, not only sexual intercourse.

Pelvic floor physiotherapy can teach you how to relax your muscles. It can also help with pain-relieving methods and teach you how to manage persistent pain.

Physiotherapy may involve gentle muscle treatment and nerve desensitising techniques, exercises and equipment. Medicines and ointments may also be helpful to reduce the pain.

Physical and emotional symptoms of endometriosis may change the sexual intimacy in your relationship. It’s important for you and your partner to discuss your feelings and seek help from a psychologist or relationship counsellor if needed.

This web page is designed to be informative and educational. It is not intended to provide specific medical advice or replace advice from your health practitioner. The information above is based on current medical knowledge, evidence and practice as at January 2023.

This con­tent has been reviewed by a group of med­ical sub­ject mat­ter experts, in accor­dance with Jean Hailes pol­i­cy.

1
Armour, M., Sinclair, J., Chalmers, K. J., & Smith, C. A. (2019). Self-management strategies amongst Australian women with endometriosis: a national online survey. BMC complementary and alternative medicine, 19(1), 17. doi:10.1186/s12906-019-2431-x
2
Ramin-Wright A, Schwartz ASK, Geraedts K, Rauchfuss M, Wölfler MM, Haeberlin F, von Orelli S, Eberhard M, Imthurn B, Imesch P, Fink D, Leeners B. Fatigue - a symptom in endometriosis. Hum Reprod. 2018 Aug 1;33(8):1459-1465. doi: 10.1093/humrep/dey115.
Last updated: 
25 September 2024
 | 
Last reviewed: 
31 January 2023

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