Photo: A self-portrait of Canadian artist and poet Rupi Kaur, released as part of a photography project exploring menstruation, and all that can come along with it.

What endometriosis and polycystic ovary syndrome feel like, and how to support the women in your life who may be suffering

Rashida Dungarwalla

I wake in the night with a searing pain ripping through my lower abdomen.
I feel nauseous, my legs start to go numb, it feels like something is clotting the blood from flowing freely through my thighs. My vision starts to get hazy, and I feel faint. I notice a surge of emotion, knocking me about like a wave. Whether it’s sadness or anger, I’m unsure. My lower back is tightening like a coil. I am tired.

Pain experienced from various physical health conditions and the implications it has on our mental health are staggering. With a view of shining light on pain points for women in particular, I want to talk about the emotional and social impacts of endometriosis and polycystic ovary syndrome (PCOS).

For those who don’t know, endometriosis is a condition in which tissue similar to the lining of the uterus, grows outside of the uterus. On average, it takes 6.5 years to be diagnosed with endometriosis. There are nearly 1 million Australians with endometriosis. Polycystic ovary syndrome (PCOS) is a complex hormonal condition that affects about one in 10 women.

Research indicates we do not experience one type of pain without the other. The implications of physical pain on our emotional and social health overlaps and the comorbidity between physical (specifically pelvic pain) pain and depression is as large as 86 percent. Major Depressive Disorder and Generalised Anxiety Disorder are the most common comorbid conditions related to chronic pain.

We also now know that social and emotional pain registers in many of the same brain regions as physical pain. Neuroimaging suggests an anatomic overlap in the pathway of chronic pain and depression/ anxiety. Our body and mind often finds it hard to tell the difference between what is being experienced physically or cognitively - resulting in a compounding effect of overall pain. The typical trope ‘it’s all in your head’ can be challenged with this evidence.

To add a layer into the mix, we also experience ‘interoception’. Interoception is the sense of the internal state of the body. It involves the perception of physiological signals arising from within the body, such as heartbeat, hunger, thirst, breathing and the need to urinate. This sense allows for individuals to experience the interpret bodily sensations that contribute to the regulation of vital function and homeostasis.

The internal fluctuations and system changes within our body send a bi-directional message back and forth from our brain alerting the alarm to something being ok or not ok. This means that when something changes physically and internally within our bodies, our mind attempts to interpret what that shift means and then acts accordingly.

Interoception is crucial for maintaining bodily balance and overall well-being. It helps individuals respond to internal cues like when to eat or drink or understanding emotional states. The brain processes these internal signals which can influence emotions, decision-making, and behaviour.

Impaired interoception can be associated with various health conditions such as anxiety, depression, and eating disorders.

If we consider then that a gynecological condition such as Endometriosis or PCOS creates such fluctuating internal signals - we can understand why the spike in emotional and cognitive impairment or the development of a mental health condition may arise.

If your body is internally shifting in a way that is making you sick, and it signals you need rest, however you have to go to work or school - you are going to find it difficult to get what your body needs to feel ok and therefore likely notice an increase in anxiety, or low mood.

We can also acknowledge that being in severe physical pain does not make for a great foundation of wanting to socialise or be around people. Typically when people experience pain they want to withdraw, stay at home in bed, draw the blinds and sleep. Women report feeling a level of fatigue similar to going through Cancer treatment whilst experiencing hormonal fluctuations and pain associated with these conditions. To be expected to function as those in society not facing these symptoms can result in immense pressure and additional levels of stress. For some there is no other option but to continue on with their days as if functioning pain free.

The implications of physical pain and emotional/social pain costs our economy billions per year and costs those suffering not just a financial toll but also depletes most areas needed to function well. With recent research indicating that conditions such as Endometriosis results in 4 days per month off work or school. Leading to social isolation, feelings of loneliness and increase in suicidal ideation. The experience of feeling like your body is failing you, can result in symptoms of dissociation through derealisation or depersonalisation.

According to pain overlap theory and the social pain theory, social pain could also trigger numbness in the body. A feeling that your body is no longer yours. A research study conducted by in… found that women reported ‘experiencing a sense of betrayal from their own body or compared their body to a prison’.

Then there is the damaging societal pressure to ‘look a certain way’ and with conditions such as Endometriosis and PCOS resulting in excess hair growth and fluctuation in weight, mental health professionals life myself are seeing an increase in conditions such as body dysmorphia and disordered eating.

Another study indicated that ‘many women with chronic pelvic pain or gynecological pain believe their medical practitioner did not understand the extent or seriousness of their pain, and gave them the impression that they were hysteric, neurotic and the pain was “all in my head”…’

So that’s the not so great news. The good news is there are a number of tangible ways to support those living with endometriosis and polycystic ovarian syndrome.

Believe them. Believe them when they speak of their pain, exhaustion, fears, loneliness, nausea and lack of motivation. Support in ways that you would want to be supported if you were physically unwell and feeling immobilised by the symptoms your body was facing.

Validate and provide reassurance. Be open and curious and understanding.

In time, with more advances in research, awareness, and acceptance we hope to see new innovation in the care for those experiencing both physical and emotional pain to ensure these percentages drop and people are able to function without having to face additional challenges when facing such horrible health conditions.

If you are suffering and need support - please reach out to a medical practitioner that has experience working with these conditions and who can provide holistic care for the ecosystem that is our physical and emotional health.