I’d been anticipating the arrival of Endo what for many months. Back when I donated to it on Indiegogo I hoped it would go some small way to explain the difficulty of living with endometriosis. I couldn’t have imagined that it would hit each of the notes and nuances of endometriosis so perfectly.
What endo what does well
It does a great job of packing in a great deal of really helpful and clear information about endometriosis in a short amount of time (54 minutes).
Part of the reason I’m so pleased with what the films creators have done is the films tone. It mixes patient stories, with statistics and advice from accredited endometriosis specialists. Its aim is to improve patient confidence and understanding so that we as patients can be more informed and empowered to instigate our own individual change.
Also endo what was very emotive, and very moving – I didn’t expect to be so moved. The film hit the points and the issues perfectly. As someone who accepts my diagnosis of endometriosis I was surprised by how much it moved me in places. It reminded me of how much of a burden we simply carry around and get on with.
It was so nice to see patient testimony standing alongside expert knowledge. This is the sort of vindication that one of the patients explains she receives with her diagnosis – that we are also the experts of endometriosis, we are through practical experience.
Endo what also helps us understand how far we’ve come together as a community and how much more there is for us to come.
Who would find Endo what useful?
Everyone, but namely:
- Newly diagnosed patients or patients still seeking diagnosis
- Patients who have had endometriosis for a long time and need some new ideas
- Friends, family and partners of endometriosis patients
- Clinical practitioners who wish to improve their knowledge.
What endo what covers
Here’s s top line summary of the information you can expect to hear in endo what.
What is endometriosis?
It starts out with a great definition of what endometriosis is – it’s a great definition. The first part of the film alone works as a introduction to endometriosis and its core themes.
Crucially it gets across how endometriosis whole body disease – that affects everyone differently, not just bad period pain. it explains the genetic implications of why you may have ends.
It does a great job of explaining the staging system and how there’s no correlation to pain levels and severity. It also does a good job of explaining why diagnosis takes so long, and how difficulty it can be to spot endometriosis.
Endo what give details and evidence for each of the following myths:
- Young people don’t get endometriosis. (difficulty of endometriosis when younger, early intervention)
- It’s a careers woman’s disease (women who work, who have not had children) the implication being the best treatment being to have a child
- Pregnancy doesn’t cure endometriosis – some people may get an improvement, but it’s not guaranteed
- Hysterectomy cures endometriosis – there are some stats on possible reoccurrence if all traces of the disease are not removed.
Explains the main medical strategy is to control endometriosis using hormonal surprising treatments including;
- Birth control pills
- Pros and cons for treatment
- Side effects
- The flaws of hormonal medicine and the lack of endometriosis-specific medicine.
- Surgery – and what to get out of it, questions to ask your surgeon, what type of surgeons to look for
- How to confirm endometriosis
- How laparoscopies should be about treatment and not just diagnosis.
Endometriosis and fertility
- How many women with endometriosis are infertile
- How endometriosis impacts infertility
- How treatment for endometriosis may improve infertility
- How endometriosis doesn’t necessary mean infertility
- How endometriosis and inflammation are linked
- How inflammation is a bodily defence for infection
- How to manage inflammation and through nutrition, exercise and mind and body links.
- Using western and eastern medicine separately or together
- Figuring out what treatments work for you
- Improving sleep
- Digestion issues
- Immunity issues
- Nutrition (issues with sugar, fat, processed food, chemicals in food, additives in food and how good diet may improve endometriosis symptoms).
- Endometriosis diets – how there’s not one diet that will help everyone, but it’s very individual
- Supplements and some ideas for how to start
Prevalence of endometriosis
- How endometriosis cases and the severity of cases has increased in the last 100 years
- How the improvement of western culture has increased types of lots of different illnesses
- External environmental influences on endometriosis
- Hormone disruptors
- Pesticides and how to avoid them
Taking charge of your own health
This was the key part of the documentary for me, best summed up by this quote from Mary Lou Ballweg of the Endometriosis Association:
This is not a disease where you can throw yourself at the feet of a doctor and say “cure me”. Only you know your body, the disease is highly individual. So what might have worked for your friend may very well be the worst thing for you.
The topics here were:
- Doing your homework on the disease
- Doctors may not have all the answers and you have to find some the information out for yourself
- Being persistent – getting as many medical opinions that you can/want
- Being your own advocate
- How things can get better once your find the right help.
Some of the information given is US-centric. For example the information cited for processed food/cosmetic ingredients and external environmental elements will be different for those watching the documentary outside the US. Rules for food labels and domestic chemicals are much stricter in the UK and other EU countries, but the information is still relevant and interesting and worth taking on board.
The other thought I had upon my first viewing is that is isn’t completely clear that some women are in pain all the time (every day) and not just during periods. This was less of an issue as I watched it subsequently, but it’s a minor quibble on an otherwise excellent film.
A must watch
Endo what does a magnificent job of summing up a very difficult subject in simple language and visuals.
It ends by explaining how there is life after endometriosis. Even the most experienced endometriosis patient will learn something.
You can buy the film on the Endo what website. It’s highly recommended watching from me.