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 claw@dmu.ac.uk 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!
