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Endometriosis UK
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Article about endo in New Scientist

newscientist.com/article/21...

Interesting that they're saying more extensive disease does seem to be linked to higher levels of pain. I know in my case my pain progressed over the years, I was an 8/9 on the pain scale at it's worst and my disease was very severe.

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I read this last night too. I was a bit bemused to be honest. When I was first diagnosed 20 years ago the pain was constant, horrific, I was bed bound for 9 months with constant high dose painkillers. At the lap they said I had mild Endo. As the years have passed more recent laps have stated it's become more severe. The pain would be horrific during period but for the rest of the time I was well. When bad it was debilitating but I really couldn't compare it to utterly horrific it was the first year. I know it's usually said that the severity of Endo doesn't always correlate with how much pain you're in so the New Scientist research is different. I guess there's so many factors involved - the amount of women they tested, their individual Endo and pain levels, whether or not at my first lap all Endo was found as it was under general gynaecology. As ever, it's all so confusing.

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It definitely is something that needs more research, we really are only looking at the tip of the iceberg. I've heard as well that there's not always a correlation between extent of disease and pain, but I wonder looking at this if they will find that actually there's a general trend of increasing disease severity = more pain with a minority of outliers, perhaps due to location of disease so the problem isn't how much you have, but where you have it, therefore having more extensive disease means you are more likely to have it in a painful location. I also think that pain can be somewhat subjective - I know that for me childbirth redefined what I thought of as severe pain. But I really hope that articles like this will help get the message across to GP's that pelvic pain is something that needs to be taken seriously.

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Yep, I've often wondered whether people feel more pain if Endo is on certain organs. And yes, you can only gage pain levels from your own personal experiences, what has been the worst pain you've experienced as in maybe childbirth for you and the first year of 24/7 horrendous Endo for me. For those who have not experienced the exact same pain (and how could they? Every individual is different) they are obviously going to have a different idea of 10/10 pain. So much more research is needed and I hope something like New Scientist will make Drs take it seriously but I also hope it doesn't make Drs think if a patient presents themselves with mild-moderate pain then they don't have severe Endo. I'm thinking of my friend who hasn't experienced the totally debilitating pain I have with vomiting, blacking out, no painkiller controlling it but discovered she was riddled with Endo after not being able to conceive. So many factors involved. It really is an incredibly tricky disease.

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Thanks for the link! Both of you ladies are so right: there needs to be so much more research done.

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