So, what is endometriosis?

By Dr Emma Rees

Endometriosis affects 1 in 9 women and people assigned female at birth in Australia.  Think about that. For every 9 women and people assigned female at birth that you know, 1 of them has endometriosis.  That may not mean much to you, because it is a long Latin sounding word that is hard to pronounce, but believe me, for the individuals that it affects, it means a lot.  It governs most of their time and a lot of their energy for various reasons.  Imagine what it would feel like if there was something affecting you physically all the time.  Consider the drain that would have on your emotional and psychological health.  Piling on top of this physical and psychological fatigue is the stigma and shame associated with endometriosis. How would you feel if you felt too embarrassed to talk about it, or worse, that people didn’t believe you when you did? Now, hold that thought…

Let’s talk about endometriosis in more detail because only then can we begin to understand the reality 1 in 9 women and people assigned female at birth live with every day.  It is hard to divorce emotion from any discussion about endometriosis because the indiscriminate nature of the condition, coupled with the fraught pathway to diagnosis and chequered prognosis lend themselves to a deep and justified sense of injustice for sufferers.  Firstly it is important to say that the cause of endometriosis is unknown.  Nobody gives themselves endometriosis.  No one would choose to have painful periods or pelvic pain, or fatigue and anxiety.  Although there does seem to be a correlation with family history (if you have a close relative with the disease, you are 7-10 times more likely to develop it yourself) and other factors which have been linked to developing endometriosis, such as starting your periods before the age of 11, there are no definite causal relationships identified as yet so this is an area still under review.

Endometrial cells are the cells which line the uterus.  In endometriosis, these cells start to grow in other places and most often, this happens at other places in the pelvis such as on the ovaries or on the lining of the pelvis.  You can have endometrial cells growing outside of the pelvis but this is very rare.  The natural menstrual cycle is the body’s response to hormonal changes which ultimately leads to a shedding of endometrial lining and cells in a monthly bleed.  Most of this flow goes through the vagina to exit the body but some of this flow will go into the fallopian tubes, known as retrograde flow.  When this happens, some endometrial cells will also flow into the fallopian tubes and into the pelvis.  Usually this should not be a problem as small numbers of endometrial cells should be processed by the body’s immune system. There are theories that if there is a large volume of retrograde flow containing higher numbers of endometrial cells, this may contribute towards the development of endometriosis as those cells attach themselves to other areas of the body. At present this remains a theory.

So what are the symptoms? For a person, this means that when they have their menstrual bleed, these areas of cells will also respond and cause bleeding.  There is no natural outflow in the pelvic cavity and this bleeding irritates the surrounding tissue causing inflammation and pain during the period.  The pain increases in intensity as the area becomes more inflamed and irritated.  Over time, the inflamed areas scar and scar tissue begins to connect parts of the pelvis and organs, including the bowel. Over time, structures which are usually mobile in the pelvis, like the uterus become stuck, intensifying the problems of inflammation and irritation and the frequency of pain increases, not limited to during menstruation.  Whilst the potential to bleed exists is an ever increasing cycle, intensified if structures become stuck in place.

Treatments are focussed upon either altering hormones or trying to remove scar tissue.  If we try to reduce the oestrogen produced by the body, this will affect fertility which has a huge psychological impact, even if it’s a reversible change.  If it is reversed, and levels are allowed to rise again the fear of the potential pain associated with increased oestrogen takes its toll. Not to mention the unknown impact of the condition on fertility itself and the question each person has over whether they are allowing themselves to experience the pain and possible damage associated with rising oestrogen for the potentially unachievable goal of fertility.

Consider these questions in the context of an averaged  6 and a half year journey to diagnosis, a road that may have been overshadowed by people telling you that ‘period pain is normal’, ‘to get on with it’ and ‘it’s all in your head’.  Add the fact that achieving a diagnosis is only the first step in the battle many people have with endometriosis and try and put yourself in the shoes of someone living with this every day.  It’s not just a long latin sounding word that isn’t easy to say any more is it?