Endometriosis Blog
It has been estimated the 90 million women globally suffer from Endometriosis but in fact the figure could be much higher. Perhaps even three times that figure. Many people with Endometriosis feel that not enough relevant research has been conducted into the area.
The Patients Voice is preparing a rolling study on Endometriosis to take place later on this year. To help us frame the research (that is creating the discussion guides and questionnaires) we need to find out what are the “hot buttons” or key issues for Endometriosis sufferers and their families. Thus we have created this Blog to help address the challenge. This will allow you to tell your Endometriosis story and bring up the issues which are most important to you which we can include in the research programme.
We are particularly interested in the following questions:-
- How long did it take and by what process were you or your family member diagnosed?
- How well prepared were you or they for the outcome? What kind of support were you or your family member given by healthcare professionals, patient support groups, family and the community around you generally?
- Do you feel there is a stigma attached with Endometriosis? If so why and what can be done to overcome it?
- How effective is the treatment you or they are provided with?
- What advice would you give to a woman who had just been diagnosed with Endometriosis?
Bear in mind this is only a guide so please fell free to bring up any pertinent issues. Also do add any resources you may feel are useful to fellow members of the Endometriosis community.
Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.
To participate all you need to do is type a nickname of your choice and then put your comments into the box. Your comments are anonymous of course!
Best wishes
Belinda
