Endometriosis UK
36,867 members32,547 posts

Our Action Group NEEDS YOU!! :-)

Hi all,

It's wonderful that we can all offer each other support on this site. Thank God for it at times, as its been my only avenue to vent my feelings honestly. After 20+ years of suffering and another night of pain, I've had enough (again!). We all say that at some time don't we?

Anyhoo a few of us are keen to raise awareness nationally and are looking to set up an Action/Steering Group to organise our campaign. It would be fantastic if you'd get involved whether a teenager or older, there's a whole spectrum of psychological and emotional effects relating to this life-destroying disease. Let's show that it affects any age, shape size and profession indiscriminately.

I do think we need to get properly organised and have a key objective to achieve. For instance, I'm extremely passionate about lobbying government to recognise this disease and help set up consistent health care across the UK, not to mention the benefit issues for those of us who struggle to hold down a career because of it. Some of the other members have some fantastic marketing ideas.

Come on ladies, let's unite and try. It'd be great if you'd email my personal address below.

My email: lindascyprus@hotmail.com

Sorry if I sound a bit driven this morning, I've been awake all night in pain. Feel better for that rant - thanks for reading ;-) xxx

6 Replies

Hiya, just wanted to double check that we will be working on this together? And that I will get all details through e-mail if someone contacts you? As I am making a list of people who are helping with this and where they are to make things easier and more organised.



Hi everyone

Thanks for using the Endometriosis UK Health Unlocked forum. Actually raising awareness is exactly what Endometriosis UK is set up to do - as well as providing support and information. However as we are only a small charity one of the things we lack is 'hands' to get involved. Information, campaigning materials and Awareness Week activities are all available on the website - endometriosis-uk.org and I hope you will visit there, sign up for our regular monthly e-newsletter (joining 21,000 others) to find out what else is happening.

I hope that we could all work together on these things rather than separately as there are a number of things in the pipeline that could benefit from enthusiastic volunteers.

Many thanks



Helen take this down because you've done the same to mine...only fair!! You didn't even give me chance to see if anyone else posted today, you are ridiculous!


Hi Helen,

Just wanted to say what a fantastic job you and Endometriosis UK do in campaigning for women with endometriosis. Awareness seems to have improved during the last 10 years and it is great to hear about new initiatives such as accredited centres for endometriosis and the work done by the BSGE. Your newsletter is brilliant and very informative - thanks so much! Would definitely recommend it to others.



Hi I am totally confused, probably because I am fairly new here. I was about to email to say yes I am definitely available to join a support/action group and then read all of the comments. We are all wanting the same goal so why are there separate campaign groups. Tell me what to do and I'll join just am confused.com here!


Hi SusiePg,

This support forum is officially affiliated with Endometriosis UK.

Endometriosis UK is a charity that is committed to providing much needed support and information for anyone affected by endometriosis. Our support groups across the country and free helpline service offer support on a wide scale to those affected by endometriosis and enable them to understand the condition. We also work incredibly hard to increase understanding of endometriosis through campaigning, research and awareness raising activities.

However we are a small charity and could benefit from having enthusiastic volunteers that really want to get involved.

For more information please see our website:


All the best,

Endometriosis UK


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