Getting involved by sharing your patient perspectives on endometriosis

Why are you asking patients to provide their perspectives?

Firstly, thank you for showing an interest in helping us make this site better. We are looking for patients (and their partners) to come forward to provide a candid 'insiders view' of how it is to live with this disease. The scientific articles and the facts behind endometriosis only reveal half of the picture. It is the stories of the countless women who have struggled for years getting a diagnosis and effective treatment for this disease that truly brings the reality of endometriosis alive to all those concerned.

So what do I have to do?

Simply download the Endo Stories pdf, pick out one or more topics you'd like to cover in your bio (or choose your own topic) and start writing or recording (you can use the example questions to help guide you). When you are done, please send your patient perspective to endopaedia@gmail.com along with any photos you'd like to have included with your piece. If you are willing to film or record your bio then please let us know via email and we'll discuss with you how best to forward your work on to us so that we can upload it to the site.

How long does it have to be?

It can be as long or as short as you like.

What types of photos could I include with my piece?

Again, this is up to you - a current photo or one of you as a young girl... hospital photos, surgery pictures... whatever you feel comfortable with and, in your opinion, best brings your story to life. Of course, you don't have to provide any photos if you'd rather not.

Do I get to see the product before it goes 'live'?

Yes! We will let you know once it has been compiled and send you a private link so that you can have a look before it is added to the site and can have a final say and make any last minute changes. It is our intention to include all the submitted pieces verbatim because these are your personal perspectives and you are best placed to tell them.

What if I later want my piece taking down again?

You can always contact us with any requests and if you do change your mind about having the piece online we will immediately oblige by removing it. Any work submitted remains yours. It will only be used (with your permission) on Endopaedia and not elsewhere.

What's the deadline?

There is no deadline - take your time while compiling your patient perspective. This is an ongoing evolving project. Stories will be added as we receive them. Obviously it would be nice to have some ready to publish on-line in the next month or two, if anything to inspire others to do so too.

Any more questions?

Send them to endopaedia@gmail.com and we'll gladly answer!

Thanks again for your help!