Politics - organising to beat the shit out the disease

[yonder]

Dear all,

My second post! Like most, I've been appalled by the lack of funding that is invested into research into endometriosis. As a woman in the documentary 'Endo What' says, "Endometriosis puts a burden of an estimated $190 billion annually. So this isn't just a disease of women with painful periods, this is a societal disease". Or, one women out of ten, as they say.

Although marathons and cake-selling events have their purpose, I have a hunch that women that need to organise more effectively for politicians to hear them. Have there been demonstrations in front of Westminster? Mass-rallies against endo?

How best do you think we grab society's attention to give endometriosis the funds it deserves? I'm a journalist. Would have any compelling stories to tell me so as to raise awareness?

All the best,

Natalie

p.s: the trailer for the documentary "Endo what?"

theguardian.com/society/vid...

[urgley]

trouble is, we'd all be too tired to protest!

[yonder in reply to urgley]

Dark humour Urgley! Well perhaps we could push hospital beds then? That would make for impacting imagery!

I like your previous post of writing to MPs. Do you know if there's been any mass action of that type?

Reading the Guardian review of 'Endo What?', I see that the director is trying to take inspiration of AIDS campaigns to raise awareness around the disease:

"Having been through misdiagnoses and multiple surgeries, Cohn wanted to do something that would put pressure on the medical establishment to change things. She started researching successful social change movements and studied HIV and Aids campaigns.

There were three important lessons, she told me. “One, patients became experts in their disease; two, they organised incredibly well; and three, they weren’t afraid to make people in power uncomfortable.”

Endo What? is Cohn’s attempt to enable lesson one – patients becoming experts – and brings together the US’s leading endometriosis specialists as well as women with the disease to ram home some simple truths."

Perhaps we could all start by hosting screenings of the documentaries at our homes? Alongside with marches and MP letters?

[Hidden]

I'm making a video at my about it and I also made an essay a few weeks ago.

Perhaps it could be something a long the lines of "Leters to my younger self" "to doctors"

I may be exhausted but I won't stop fighting for this do you want me to message you my story or just write it here?

I'm awaiting diagnosis but I've been cleared for all other illnesses, so I'm not sure if I would be good for it.

[happyseal in reply to Hidden]

Good idea actually...

[urgley]

I keep considering writing to my doctor, when I go to see her I'm so exhausted, embarrassed and self conscious that I forget all the things I was going to say.

I think it would be a great idea if we could all write open letters to our GPs, explaining what it's really like to "live" with. Especially before diagnosis.

I also got a response from my mp with the response of the health mp, basically saying that all GPs are trained in knowledge of Endo!! She is also contacting the dwp to ask why it is not counted as a disability.

[Hidden in reply to urgley]

I want to write a letter to my doctor, I was 8 when I first came to her about my periods with bowel issues and she told me they couldn't be related and gave me antiacids which made me lose wieght b/c I had no appetite b/c they were so strong so I was referred to a physch for hypochondria and anorexia at 14!

When the physch got mad at her and sent an angry letter basically telling her to do her job she told me I had to live with it...

Then this year I'm 17 and she apologized to me and siad "Well in the medical field we don't know enough about endometriosis"

But the ER drs told her to send me to a Gynacologist due to free fluid in my abdomen during an ultrasound at 12 and the pain kept spreading.

I also found out the doctors in the clinic do know about the symptoms.

So I told her "Sorry isn't gonna fix this mess"