Endometriosis research

[kaloust]

Does anyone know where I can find out what research is being done into endometriosis? I've just been having a look online and I found the list of priorities for research relating to endometriosis, which look great. ed.ac.uk/files/atoms/files/...

Does anyone know what's happening now though? Has there been a study estimating the impact of the disease on the UK economy? If so, this surely supports a strong business case for funding - has a good level of funding already been secured or are there ongoing campaigns to secure funding? What research programmes have been approved and what are the time-frames for these? What organisation is co-ordinating everything?

Thanks for any info.

[HH87]

I’ve briefly looked into the same questions and couldn’t find any answers. This was admittedly a long time ago so there might now be answers that I didn’t find. I felt frustrated at the lack of research, awareness and even government interest into this condition that impacts so many women’s lives.

I would also argue that, for the reasons you mentioned, that there is strong case for funding and it is a public health issue. Imagine the total annual cost of lost hours in the workplace due to women taking time off to manage chronic and debilitating pain.

My view on the lack of interest in campaigns would be that helping to increase diagnosis could be seen negatively by the government as this would increase cost to the NHS through increase in diagnostic laps, treatment etc. Although I believe this to be a short sighted view.

Again, sorry that I don’t have any answers; just wanted to share some of my thoughts and you raise some very important points.

[kaloust in reply to HH87]

Yeah, I was recently diagnosed and I'm staggered at how little is known about it, even by gynaecologists. Frustrated is definitely the word!

There's been a study into the cost in Australia that put it at $7.7 billion annually. Multiplying up for population, we're probably looking at about £11-12 billion in the UK. The Aussie government has put an action plan together, which looks pretty good: health.gov.au/internet/main...

[Sazle]

Hi, I just wanted to make you aware of an event taking place. If you go to a website called Endometriosis-UK.org and go to the ‘events’ part you will see in November something is taking place. Only sticking point is that it is in London so for me it would mean traveling and if on that date I’m struggling with my health I wouldn’t be able to attend. Also, I know a while ago a petition was created to get Endometriosis as s disability do you know anymore on that? It was titled Teresa May recognises Endometriosis under the 2010 Equality Act'. I work full time but am struggling with juggling work and my health but also have the worry of earning money.

[kaloust in reply to Sazle]

Thanks! Would love to go to the conference in London, but unfortunately can't make it on that day. I've just found this though - an online information session about the latest endometriosis research: endometriosis-uk.org/suppor....

There is an update on the petition you mentioned on the Endo UK website: endometriosis-uk.org/news/e...

[Sazle in reply to kaloust]

Hi, Many thanks I missed this bit of info on the website and even better the online is taking place today, so I haven’t missed it. If you find any further information out in the future please can you let me know and I will do the same for you. Thank you again.