Growth in Mind
Living with endometriosis: the emotional impact of an invisible condition

Living with endometriosis can be so stressful. Endometriosis has spent much time in the media recently (see also Georgie’s film This is Endo), which is progress, as historically endometriosis has been poorly researched. If you are living with endometriosis you will already know that it’s way more than “just painful periods.”

Having endometriosis may mean you are experiencing chronic pelvic pain, fatigue, painful periods, digestive problems and fertility worries. Understandably, experiencing these symptoms can often have a psychological impact, due to endometriosis often disrupting work, relationships, social activities, and everyday routines. Also, not forgetting the efforts of advocating for yourself to health professionals, repeated appointments, tests, and procedures, combined with limited awareness - perhaps from friends, family, employers and the public.

Over time, it is understandable that feelings of sadness, anxiety, anger, grief, frustration, loneliness, or helplessness may develop. These feelings are an understandable response to living with such a demanding chronic condition, and not a reflection of poor coping styles.

The harsh inner voice

With the psychological impact, we may notice that those of us with endometriosis can struggle with a harsh inner voice or self-criticism. Have you noticed thoughts like “I should be able to cope with my pain better,” “I’m letting everyone down because I can’t always be reliable,” or “I’m being lazy, I should just push through the fatigue”?

These types of thoughts of berating yourself can create a persistent negative emotional state, perpetuating guilt, shame, low mood and/or anxiety. Sometimes, if these thoughts have been present for a long time, it can be hard to recognise them, as we normalise them. To help identify them, ask yourself: would you say this to a friend or loved one? Often, many of us can bring compassion to others more easily than we can to ourselves.

Grieving the life you expected

Endometriosis can involve losses that are not always visible to others. You may be grieving:

• The spontaneity you once had.
• Activities you can no longer do in the same way.
• Career opportunities that feel harder to pursue.
• Changes in relationships or intimacy.
• Fertility difficulties or uncertainty about the future.

These losses matter. Acknowledging them can be an important part of emotional adjustment and wellbeing.

For partners, family and friends

If someone you care about has endometriosis, it can sometimes be difficult to understand what they are experiencing. Pain and fatigue are often invisible. A person may look well externally while struggling significantly internally.

Offering curiosity rather than assumptions can be helpful. Listening, validating their experiences, and recognising that symptoms can fluctuate day-to-day can help reduce feelings of isolation. Try not to be solution focused - trust that they are the expert of their difficulties. The chances are they have tried everything within their means to support themselves, and just being alongside them is supportive enough.

How therapy can help

Therapy does not replace medical treatment; however, it can support you in navigating these emotional challenges and building coping strategies to reduce the emotional burden.

Working with a psychologist can help you:

• Manage the impact of chronic pain and fatigue: develop coping strategies for unpredictable pain flares, pacing activities, and managing energy levels to reduce stress and frustration.
• Reduce anxiety and health worries: learn to manage worry about symptoms, upcoming appointments, or fertility concerns without becoming overwhelmed.
• Address self-criticism and body image concerns: many people with endometriosis might feel frustrated with their bodies or blame themselves for their symptoms.
• Process grief and frustration: therapy provides space to work through the emotional impact of disrupted plans, fertility challenges, and life changes caused by endometriosis.
• Navigate trauma from medical experiences: surgeries, repeated medical procedures, or feeling dismissed by healthcare professionals can leave lasting emotional distress. Trauma-informed approaches can help process these experiences safely.
• Enhance emotional resilience and coping: to help you live in line with your values even when pain or uncertainty is present, supporting a sense of control and purpose.
• Strengthen social and relational support: therapy can help you communicate your needs with partners, family, or colleagues, improving understanding and reducing isolation.

If you are living with endometriosis, it is important to remember that the emotional impact of the condition is just as valid as the physical symptoms. You do not need to wait until you are “struggling enough” to seek support. Looking after your psychological wellbeing is not separate from managing endometriosis.

Resources

• Endometriosis UK - lots of helpful information and support.
• Emma Barnett: Fighting Endometriosis (BBC documentary) - this isn’t an easy watch, so please consider support for yourself if you choose to watch it.
• This is Endo, Georgie’s film - also watch with caution if you are feeling vulnerable.