March was endometriosis awareness month. And in order to raise awareness about endometriosis, a crippling, chronic gynaecological condition affecting 10% of women worldwide. Despite the condition being nearly as common in the UK as diabetes, not much is known about this condition. Not only that, but it takes forever to be diagnosed with it, despite numerous visits to the doctors and hospitals.
I have been suffering from it for a number of years and wanted to help a friend who was told she will have to have an operation soon. Being a woman biologist, I wanted to also get to know the devil inside me and learn about it as much as I could. The more recent knowledge, the better. Not just so I can help myself, and hopefully my friend to make a decision, but also to be able to write about it and spread the word.
So, logically the first thing to do is to go to is PubMed Health, right? If you’re not a bookworm and don’t want to know and learn EVERYTHING you possibly can about endo, down to molecular mechanisms and gene expression, than that might be enough. If you’re like me and you need to know every bloody (no pun intended) detail, then you might want to go to PubMed and look up some good Nature Reviews and see what’s new in the endo field.
I found what I thought would be a really good review to read. And tried to access it. With my university Athens account. Then through Wellcome Library. I even called a woman there at the library desk and asked if she could help me find it and download it. For some reason, this review isn’t accessible. You want it? You buy it! I had a little rant about it on my Facebook page the other day, then decided to write a ranting post about it, too; after I was unable to attend the Endo March in London this past Saturday (28th March); because it still really irritates me.
We can still spread the word about endo and raise awareness, but for endo sufferers, spreading the word is not enough. It would be nice to be able to educate ourselves and others who look at us uncomfortably and dismiss our crippling symptoms as just period pain and tell us it’s all normal or all in our head. How are we to help ourselves if we can’t even access the current knowledge about it?!
Yes, there are other papers and other reviews and books, but that’s not the point. The point is that if we want it, we have to pay for it. Which makes it a lot more difficult to raise awareness with a lot of other people, like professionals who should know about it more than we, the patients, do. So if you don’t have access to certain publications, tough. It’s life, deal with it! The more I ruminate on it, the more I think that someone wants us endo sufferers to spend a lifetime in pain and depression, so we’d continue buying painkillers and contraception meds and antidepressants and HRT. Why on Earth would anyone need #freeaccess to #scientificpapers and knowledge out there?!? Why have open access, when we can all be painfully kept in the #Dark Ages. If it weren’t for our pain, there’d be no someone else’s gain.
I wish I was able to attend the London Endo March on Saturday, I’d have met some great people, walked this frustration off, and had more cheerful material to write about and some great pics to share with you. To those who went: thank you for going it. I was with you in my thoughts.
Do you suffer from endometriosis? Or do you know someone suffering from it? Feel free to vent your endo thoughts with me here.