If you suffer from endometriosis then you are actually a goldmine of information, you are experts in the disease in your own right and there are several studies being done at the moment that would like you to share your collective wisdom about the disease with a view to improving awareness and understanding.
The first of these studies is a survey open to any woman who has been surgically diagnosed with endometriosis. Here is a summary of the research objectives:
The purpose of this research study is to understand the various ways endometriosis impacts women who are diagnosed, the pathways to obtain a diagnosis, and the effectiveness of different treatments. There are no direct benefits to you from participation. But, your willingness to participate will contribute to understanding the challenges of endometriosis sufferers and improving the quality of care for endometriosis patients.
I have taken part in endometriosis research myself and know several women who have and I can tell you it is a richly rewarded experience. Being able to tell your side of the story is almost therapeutic and the fact that this goes to helping other women with endo is a double bonus. If you think this is something you would be interested in taking part in have a look at this link https://endo-research.com:8443/EndoResearch/
The second study is one I have mentioned previously, but is still open to those able to participate. It is being conducted in the UK and is limited only to women in the UK with surgically confirmed endometriosis; the researchers are particularly interested in talking to South Asian couples. Here is a summary of this study:
Endopart - Endometriosis: Improving the well-being of couples
Researchers at De Montfort University, Birmingham City University and the University of Nottingham are carrying out research into the impact of endometriosis on couples in the UK. The team will use the findings to make recommendations about how women with endometriosis and their partners can best be supported and how care can be improved. The research, led by Prof Lorraine Culley, has been funded by the UK Economic and Social Research Council and has received ethical approval.
The team are interviewing heterosexual couples living in the UK:
. who have been living together for at least one year,
. where the woman has experienced endometriosis-related symptoms for at least one year and
. where the woman has a diagnosis of endometriosis following laparoscopy.
Each partner is interviewed separately. Findings from the study will be anonymous.
Please note, the team has closed general recruitment for couples to take part in interviews. However, they are still interested in hearing from South Asian (Indian, Bangladeshi, Pakistani) couples who may be interested in talking about their experiences.
If you and your partner would be interested in finding out more visit www.endopart.co.uk or contact Caroline Law, Research Assistant, at firstname.lastname@example.org or on 0116 2506124.
Both my wife and I have taken part in this study and I can highly recommend it to anyone who meets the criteria.
Most of the research into endometriosis is focused purely on the cold, hard scientific workings of the disease, which is great, but it’s also great to see research addressing the impact the disease has on the individual and those around them, and you can be part of it!