Emotional impact of a diagnosis of endometriosis

Many different reactions can occur when you find out you have endometriosis, and often the feelings are similar to the grief reaction. Shock, disbelief, anger, frustration, sadness, numbness, fear, anxiety, acceptance and determination may be experienced – not in any particular order and not by everyone. 

It can take up to 10 years to get a correct diagnosis of endometriosis because the symptoms can vary between women, and can change over time. It is a long time to be suffering and not know why, or to not have access to the correct treatments.

The time it takes to get diagnosed will contribute to how you feel. You may have a sense of empowerment and relief when you understand your condition. On the other hand, your experience, your circumstances and any fertility problems may mean you could also experience depression and anxiety.

Your feelings may be affected by the:

  • length of time you have had symptoms
  • time it has taken for a diagnosis to be made
  • the way you were told about the diagnosis
  • information you got when you were diagnosed
  • symptoms you have
  • treatment options available to you
  • type of personality
  • life situation
  • people available to support you
  • social and cultural background you come from and live in
  • impact of the disease on your lifestyle, your socialising and your plans for the future.

You may have a strong sense that your everyday life has been changed and that you have moved into the ‘unknown’.

Seeking help

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

If you notice you are:

  • having difficulties managing
  • always sad
  • often anxious

and you would like some extra support, there are many places you can get help. Below are suggestions that may be helpful.

Professional help

Talking with your doctor can be a good place to start. Your doctor may refer you to a psychologist or counsellor. Ask your doctor if they can find you a psychologist with an interest in endometriosis, or visit www.psychology.org.au and look up the referral section of the Australian Psychological Society.

There is now a Medicare rebate available for psychologists and allied health professionals for a specified number of sessions. Your doctor (GP) must write the referral for you to obtain a rebate.

Support groups

Endometriosis support groups give you the chance to talk to other women who are experiencing the same ups and downs as you. If there aren’t any support groups in your area, consider joining an online group, or even starting a group of your own.

For patients in or around Melbourne, there is an endometriosis support group that meets at the Epworth Freemasons Hospital. For more information visit Epworth Freemasons Endometriosis Support Group

Depression, anxiety & endometriosis

Some women with endometriosis get depression and/or anxiety.

This can be for many reasons including:

  • taking a long time to receive a diagnosis
  • coming to terms with the diagnosis
  • changes to your lifestyle
  • dealing with chronic pain and other symptoms
  • hormonal treatments, which can affect mood and emotional wellbeing
  • unsuccessful treatments and recurrences that require ongoing treatments
  • dealing with the possibility of infertility or being infertile
  • lack of support/understanding
  • financial problems, such as taking time off work for surgery, treatment costs
Depression & endometriosis

Depression is more than feeling sad. It involves more constant and intense negative thoughts and feelings. It can mean changes to your eating and sleeping patterns, trouble with concentration, feeling tired all the time, losing confidence and losing interest in the things you used to love to do.

Anxiety and endometriosis

Anxiety involves extreme feelings of fear and worry. Physical symptoms might include a racing heart, rapid breathing and sweating, while psychological symptoms can involve worry, over-thinking things, and avoiding situations. It can lead to a loss of confidence that makes decision-making difficult, and can lead to withdrawal and avoidance of people and places.

Coping with depression & anxiety

The effects of depression and anxiety can feel overwhelming, but there are things you can do to help manage the symptoms.

Body image

Body image is the way we think and feel about our body. From childhood through to adolescence and adulthood, body shape changes, and sometimes so does body image.

For women with endometriosis, negative body image can be a problem as physical symptoms such as pain, fatigue, bloating, painful sex, irregular periods and bladder/bowel problems can affect the way you feel about your body.

Some women with endometriosis may feel their body has failed them somehow.

“The pain, and the not knowing what impact endometriosis is going to have on my life, not only from day-to-day, but in the future. How will my body feel tomorrow? Will I be so bloated I look pregnant? Is my body going to allow me to have children? I don’t feel like I can trust my body.” – Jane

How to improve your body image

If you don’t feel good about your body image there are some things you could try to help improve the way you feel, so visit our webpages to find out more.

If your body image is negatively affecting your day-to-day emotional wellbeing, seeking professional help may be useful. Look for a counsellor or psychologist who is trained in the area of body image, and even better, endometriosis as well.

Stress & endometriosis

Stress occurs when you feel threatened, or feel you cannot cope with a situation. While a little stress can provide motivation to act, too much stress, particularly over a long period of time, can take its toll on your health and sense of wellbeing.

There are different levels of stress from a little bit, to stress that is so overwhelming it causes physical reactions such as nausea, diarrhoea, overeating and under eating.

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

Living with endometriosis can cause stress in a number of ways:

  • dealing with physical symptoms, especially pain
  • coming to terms with lifestyle restrictions
  • undergoing treatments/surgical procedures
  • the strain placed on relationships
  • the possibility of infertility
What you can do about stress

What works for one person may not suit another. However, there are some helpful ways to deal with stress.

To manage stress you need to:

  • know what causes you stress – the stressors
  • if possible, eliminate the stressor
  • find ways that suit you to manage the stress
  1. Dunselman GA, Vermeulen N, et al. ESHRE guideline: management of women with endometriosis. Hum Reprod. 2014;29(3):400-12.
  2. Wykes CB, Clark TJ and Khan KS. Accuracy of laparoscopy in the diagnosis of endometriosis: a systematic quantitative review. BJOG 2004; 111:1204–1212.

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