At what age did the symptoms of your endometriosis appear? A lot of women I’ve spoken to have told me that their symptoms appeared not long after they started their periods, and certainly, a great deal of women with endo find their symptoms were in full force by the end of adolescence. Of course, no matter when the symptoms began, the most universal challenge women with endometriosis face, is getting those symptoms taken seriously so a diagnosis can be made. Therefore, wouldn’t it be great if there were a set of guidelines regarding pelvic pain that doctors could use to flag up potential cases of endometriosis in young girls to speed up the whole diagnostic process.
Hopefully that is a reality not far off. Several studies published over the last few years have tried to formulate a procedure that will increase accurate diagnoses of pelvic pathology in young girls. It goes something like this; if girl complains of excessively painful menses, first off give her non-steroidal anti-inflammatory painkillers (NSAIDs) for three months. If these fail to work give the patient oral contraceptives and suggest referral to a gynaecological specialist for further assessment. That’s about it really, pretty simple. Of course it’s not that simple, because we must educate the patient (and doctors) about the different kinds of pain girls can present with.
For example, the most common pain symptom in women with endometriosis is dysmenorrhoea, or excessively painful periods. But what classes as excessively painful? Yes, pain is subjective, but if the pain is becoming debilitating (i.e. it is forcing you to take time off from school/work on a regular basis) then this is excessive and needs to be taken seriously and investigated further.
Then there is also chronic pelvic pain (CPP). This is pain that occurs in your pelvic area, either with or without your period, that lasts for over 6 months. If a girl is presenting with both CPP and dysmenorrhoea, this should raise a red flag with any doctor worth his salt.
Then we come to the ‘dys’s’, these are other pain symptoms frequently associated with endometriosis, such as dyspareunia (painful sex), dyschezia (painful bowel movements) and dysuria (painful urination). Any of these pain symptoms, especially if they occur more frequently during menses, are all indicators for doctors to be aware of it they are to get a rapid diagnosis and prevent undue suffering.
But why might some doctors be reluctant to refer girls to specialists? There is the age old “I know better, just get on with it” ignorant attitude that many women have to deal with, but doctors are also being put under pressure, especially these days, not to refer girls to specialists because of the cost implications, but let’s think about it logically for a second. If a girl is presenting with pain symptoms indicative of endometriosis at a young age, surely it would be better to send her to a specialist as soon as possible to get the problem treated whilst she is still young, rather than waiting until she is older and more likely to need multiple surgeries/treatments.
Getting endometriosis treated quickly not only makes more sense from a patient centred approach, it also makes sense from an economic approach, especially when you consider the impact endometriosis in adult women has. Let’s put it in political (i.e. monetary) terms. A study from Canada estimated the cost of endometriosis to be $5,200 per patient, per year for surgically confirmed cases of endometriosis. This adds up to a hefty $1.8 billion annually in Canada just for surgically confirmed cases of endometriosis. Where are these costs being incurred though? Obviously there are the medical costs, but endometriosis is incapacitating, so it affects all aspects of a woman’s life. A study from Puerto Rico amply demonstrates this by assessing the quality of life and work productivity of women with endometriosis. What they found was that women with endometriosis presenting with quality of life scores “denoting statistically significant disability in the physical and mental health components”. I should probably point out that when they say significant disability in the mental health component, they are referring to mental aspects of the disease such as stress and depression, they’re not suggesting you’re all mentally handicapped!
The study goes on to say women with endometriosis lose, on average, one day a week in work time due to the disease symptoms. Lose 13% of work time, lose 64% of work productivity, have a 65% impairment of work and a 60% impairment of daily activities.
All those billions of dollars lost, all those hours of life spend needlessly suffering, all that time lost, all those lives ruined; where does all this lead back to? To the diagnostic and treatment delays in endometriosis. If the disease is diagnosed and treated early and effectively we can begin to eradicate the negative impact it has. So, to all those people, doctors, nurses, family, partners, anyone, who dismisses and marginalises the suffering women with endometriosis must endure, you are not only catastrophically harming the life of an individual, you are damaging society as a whole.