I remember way back when I first started studying endometriosis, it must have been around seven years ago when I properly got into it. When it comes to studying a subject, seven years isn’t very long, but I already had a bit of a head start in understanding endometriosis because I grew up with a mother who had endometriosis, so I got to see the effects of the disease first hand. That said, even with a fair degree of background knowledge, there was still a lot I didn’t know about the disease and trying to find information about endometriosis was quite difficult as there were very few studies that explored how the disease affected women. There have been a few small scale studies in the meantime that have addressed the issue and given us some of the common statistics we hear about endometriosis (like average diagnostic delay, average age of suffer etc etc. But these studies have tended only to focus on a single country or population which limits their scope.
In order to address this issue the Global Study of Women’s Health (GWSH) have recently completed a study looking at the effect of endometriosis on 1,418 women in 16 different countries around the world. One of the key findings of this study I have mentioned before in a previous post, but more data has been released, which highlights some other important information about endometriosis that everyone should know. I’ll go through what else has been found so far and give a little comment on each finding:
• “Women with endometriosis experienced an average delay of 7 years from symptom onset until they were finally diagnosed and treated”
The delay in diagnosis is one of the points that needs addressing most urgently in women with endometriosis. I’ve heard other statistics that say the average time to diagnosis is around 7-9 years and frankly this is totally unacceptable. In my humble opinion, the best way to shorten these diagnostic delays is to get more education about endometriosis to young girls and medical professionals.
• “Two-thirds of women sought medical help for their symptoms before the age of 30 (one-fifth below the age of 19)”
It’s interesting to know when women are seeking help for their symptoms. I know a lot of women get put off seeking help because they continually get unhelpful medical advice, which is another reason why better education about endometriosis is needed.
• “65% of women with endometriosis presented with pain, and one-third of these women were also infertile”
Nothing massively surprising with this finding. However this is exactly the sort of information that, although it seems obvious to you and me, needs to be shoved in the faces of those with enough power and money to do something about it.
• “Infertility alone, without pain, was reported in 14% of women with endometriosis and 29% of those who did not have endometriosis”
When I looked at this, at first I thought it was saying women with endometriosis had less infertility than those without. Looking at it though, it’s saying women with endometriosis experience more pain with infertility than those without endometriosis. OK, that may have been obvious to you, but it had me scratching my head for a minute.
• “The severity of endometriosis (r-AFS disease stage) did not reflect the severity of a woman’s symptoms”
This is another finding that definitely needs to be reiterated to everyone everywhere. It is an important piece of information because it seems to counterintuitive. Anyone who was new to endometriosis may think that minimal disease equals minimal symptoms, but endometriosis is not a simple, logical disease. That is why studies like these, which turn assumptions on their head, need to be done.
• “Women with endometriosis suffer a 38% greater loss of work productivity than those without endometriosis – this difference was mainly explained by a greater severity of pain symptoms among women with endometriosis”
• “Reduced effectiveness at work accounts for more loss of work productivity than time missed from work”
• “Non-work related activities, such as housework, exercising, studying, shopping and childcare were also significantly impaired by the painful symptoms of endometriosis”
These all seem pretty obvious. But anyone reading this probably has the power of hindsight. When I first started out researching endometriosis this is exactly the sort of information I needed to know and is exactly the sort of information politicians, policy makers and anyone ignorant to the plight of endometriosis sufferers need.
• “The pain symptoms of endometriosis reduce quality of life, with the impact being mainly on physical, rather than mental, health. As symptoms become more severe, quality of life is further reduced”
Well, Duh. But in all seriousness, studies like this are great for highlighting the problems faced by women with endometriosis and the more awareness we have the more support we can get.
