How many women with endometriosis experience infertility?
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Happy Endometriosis Awareness Month! My social media is pretty much a wall of yellow this month (great to see!) but something that has been frustrating me—there is always something—is the frequent claim that 50+% of women with endometriosis experience infertility.
So how many women with endometriosis do experience infertility?
The short answer is: a lot less than you’re probably thinking.
If you’re a woman with endometriosis (or a loved one has it), chances are you’ve Googled the crap out of endo. A lot of supposedly reputable websites state that about 30-40% of women with endometriosis experience infertility. I call b.s.!
This statistic is derived from studies who looked at small groups of women attending specialised treatment clinics and endometriosis support groups. These women are much more likely to experience things like infertility; it’s why they are attending those services in the first place. It’s much more useful to look at women in the general population and see what’s going on for those who have been diagnosed with endometriosis. Lucky for us, some clever bunnies (I have Easter eggs on the brain) have done just this.
These studies tend to analyse data from surveys completed by lots of people who are similar to the entire population (e.g. the Australian Longitudinal Study on Women’s Health) or health databases that include most of the population (e.g. everyone who has been issued a Medicare number). And it is these studies (including this Australian paper) that suggest 10-13% of women experience infertility.
THAT’S A LOT LOWER THAN 30-50+%!
It’s also not that much higher than the amount of people in the general population (i.e. everyone) who are thought to experience infertility which is 9%.
Let’s also think about what ‘infertility’ even means. The World Health Organisation defines it as the “inability of a sexually active, non-contracepting [i.e. not using condoms or the pill, for example] couple to achieve pregnancy in one year”. So of those diagnosed with infertility, some will still go on to have one or more children with treatment (e.g. IVF) and/or time.*
Sometimes people point to the observation that up to 50% of women diagnosed with infertility are also diagnosed with endometriosis and claim that this is evidence of endometriosis-associated infertility. This is problematic. Having endometriosis may not explain their infertility – it might have been caused by something else. Further, these women may never have even been diagnosed with endometriosis had they not tried to conceive; some women have endometrial disease but with no symptoms and are not thought to benefit from treatment.
Now all this does not mean the experiences of women who have both endometriosis and infertility are any less important or valid. Nor does it mean that it’s not legitimate for women to worry about potential infertility should this be of concern to them.
Women are entitled to accurate information to assist their fertility choices; this includes the choice to not have children (either for now or ever). Endometriosis information sources need to ensure they are informing women and doctors that a diagnosis of endometriosis is NOT a death sentence for one’s fertility – far from it.
*It's difficult to find a statistic about how many will go on to have one or more children due to so many factors being involved such as age, reason for infertility, treatment/s used, etc. Also, I want to make it clear that I don't mean to be callous about how shit infertility can be to experience. If you are going through this, I'm so sorry and hope that you have a mountain of support to get you through to The Other Side.
Image via Death to the Stock Photo