Report into the impact of endometriosis on women, their male partners and couple relationships

[Endopart]

Researchers have recently completed a research study into the impact of endometriosis on women and their male partners. This study was funded by the UK Social and Economic Research Council (reference ES/J003662/1) and was carried out by researchers at De Montfort University, Leicester, Birmingham City University and the University of Nottingham. This was the first UK-based study of endometriosis to include male partners and to explore the impact of endometriosis on women, men and couple relationships. The study has now been completed and the summary report and recommendations can also be downloaded from dmu.ac.uk/endopartreport . If you have any comments on the summary report and recommendations or on the study more generally, we would love to hear them – please email Caroline Law at [e-mail].

[Brownlow]

Sounds interesting and thanks for posting. Alas, the link doesn't seem to work!

[Endopart]

Hi,

My apologies, and thanks for letting me know, I'll speak to our webteam. In the meantime, the longer link should work (I hope!): dmu.ac.uk/documents/researc...

Caroline

[Endopart]

I think the problem was that the full stop had been included in the short link - should work now.

[Hidden in reply to Endopart]

Very interesting.

I think the sexual side (or lack of ) of life with Endo, is often overlooked by doctors.

Endo also affects my

family, if I'm in pain we can't do family activities and I also worry about the impact that seeing me in pain, has on my children.

Financially we struggle too. I can't do the job I was trained to do, due to the physical side of my job. My pain and fatigue limits my capability for work. I need to work full time but I physically can't. I only work 25-30 hours each week,

And don't even get me started on the guilt I feel !

[Impatient]

Nothing new there- every element of the research results is borne out by the comments on this forum. Still for those researchers and academics who don't have experience of living with endo haven't the time to read through endo forus, it may prove eye opening to have the facts condensed in that format.

[Scooteeder]

Weirdly, I find this research both fascinating - and disappointing! It is good to know that someone, somewhere is finally interested in considering the impact of having Endo; and has written a report about this. However, what I find desperately sad, is the fact that this information has to come from a team of researchers, most (if not all) of whom probably have NO experience whatsoever of living personally with Endometriosis.

There is NOTHING in the report that has not ALREADY BEEN SAID by women living with Endo - women who use this forum. Why is it that society, and the medical professions in particular, can listen to researchers, but not to patients? Why should more attention be paid to what is said by people with NO personal experience (just textbook knowledge), as compared to what is said by women who live every day of their lives with Endo?

Yes, the researchers interviewed couples (but only 22 in total - and all were heterosexual). However, what NEEDS to be recognised is that even these couples who were interviewed, will only be voicing what has already been said hundreds, thousands of times over by women who actually have Endo - BUT TO DATE HAS NOT BEEN LISTENED-TO.

If anything, what this research DOES prove CONCLUSIVELY is that the voices of ACTUAL PATIENTS - real, live women living with Endo - are NOT listened-to. Women with Endo (and possibly their partners) can voice their concerns, explain their symptoms, ask about treatment, comment on standards of care; to little avail. Their words seem to disappear into the "ether". Instead, the only way they get even a chance at being heard is if they are "lucky" enough to be participants in somebody else's research. The sad truth of this, is that the researcher gets all the glory, and the women (and men) who actually provided all the information, insights, knowledge, understanding... remain UNKNOWN and UNACKNOWLEDGED.

This would tend to confirm the strong suspicion that, even today, in an NHS that claims to be changing (and has produced a Patients' Charter to prove it!) PATIENTS' VOICES ARE THE LAST TO BE TRULY HEARD. Research is all very well and good - but when it is doing little other than telling us what women with Endo try to tell the medical professions on a daily basis, we must ask ourselves some BIG questions...

WHEN WILL US WOMEN WITH ENDO ACTUALLY BE LISTENED TO? WE CAN SPEAK FOR OURSELVES, YOU KNOW!!

[Endopart]

Thank you for all your comments on the Endopart study and the Summary Report and Recommendations. We understand the frustration many women with endometriosis feel as a result of not feeling listened to and taken seriously, and know this is a common experience in endometriosis. We entirely agree that the voices and experiences of women with endometriosis are paramount, and should be listened to and acted upon within healthcare.

We are working to ensure the study has impact and we hope it will advance some change; for example we are sending the report out widely including to all organisations who are named in the ‘recommendations’ sections, working with organisations such as Endometriosis UK and the Royal College of Nursing to try to improve care and support, and seeking to visit centres to talk about the findings and how the recommendations can be implemented. We know that improving care and support is an ongoing long term challenge that many patients and organisations are working towards, and hope the patient voice can get the recognition it deserves.

We wish you all the best, and thanks again for your feedback,

The Endopart study team