How many women with endometriosis experience infertility?
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| Image by the amazing designsbyduvetdays.com |
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 10-15%
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.
Kate xx
*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