EndoWhat? Review

I’ve received multiple Facebook messages as to my opinion of this film, so I’ve decided to pen my thoughts. If my inbox is any indication, I’m apparently far from alone in my feelings.

I’m fairly certain my review will ruffle some feathers, but um, quite frankly, I don’t care.
I pride myself on being incredibly truthful and forthcoming and well, as a woman with a history of surgically confirmed endometriosis, this is my honest opinion of the film.
Take it or leave it.

About the movie:
EndoWhat? is a film that touts itself as an up-to-date, fact filled, science backed documentary that will educate the viewer on the epidemic that is endometriosis.

And it is.

Or rather, the first half of it is anyway.

The film gets off to a great start. Symptoms of endometriosis are discussed, the average diagnostic delay is brought to light and the need for early detection is highlighted. Personal stories give the viewer an emotional connection to endometriosis. The viewer is told that it is important to have expert excision surgery with a specialist as opposed to repeated, superficial and incomplete surgeries with an everyday OB.
The first half of the documentary is all round excellent – and then …

We are thrown into a lengthy portion in which autism pseudoscience, shampoo, and bath towels become the focus. A helping of why you should be sure to exercise really drives home the point: surgery is good, do sorta kinda try to see a specialist, but the REAL problem is your shampoo and your amount of physical activity. If you would just get out of the fetal position and go for a run…. (As a former martial artist (Black Belt) who was forced to quit martial arts because, at one time, I was PHYSICALLY UNABLE TO GET OUT OF BED UNASSISTED, let me tell you how feasible it can be to continue to exercise)….

To quote my husband who attended the screening with me “did we take a left turn somewhere?”

Now, don’t get me wrong. I’m all for any woman doing whatever she has to do to find relief from the hell on earth that is endometriosis. The issue, however, is that this film is supposedly SCIENCE based, and THERE IS NO LITERATURE (to my knowledge) that shows that swapping out your shampoo and taking fewer showers will keep you from getting nor get rid of your endometriosis. None. Endometriosis has been found in the autopsy of female fetuses at the same rate as it is found in the general population. I’m a sleep deprived mom, but I don’t recall the film discussing the very high likelihood that we are born with it. The actual fact is that women in third world countries also have endometriosis. This is a WORLDWIDE epidemic, it is not limited to those with higher environmental exposure to evil toxins.  The movie glosses over this with a selected sampling of commentary – including one physician who states that in his country, you “didn’t see” women with higher stage endo back decades ago. Goodness at the data cherry picking here. Endometriosis is a SURGICAL DIAGNOSIS. Prior to the invent of using laparoscopy for endometriosis, pelvic surgeries were performed via laparotomy. This means that, to spare you from a hip to hip incision, you simply didn’t get surgery. So absolutely. Yes. You didn’t see women with higher stage endo. Heck you rarely saw women with endo at all. BECAUSE YOU WEREN’T BOTHERING TO LOOK. Not because women weren’t doubled over in pain. Not because it wasn’t there to find.
Somewhere around here in the film, we are shown a graph on autism with the same premise. Gawddddddd. Just stahp. For the love of all things science, can someone please call it a wrap already??

This is where the film gets personal for me. And not in a good way.
You see, I was raised very “natural”. “Crunchy”. In fact, when my symptoms first presented, I didn’t start with a visit to a doctor. Nope. I went to my trusted herbalist. Then to, nope, still not a MD, but instead to a chiropractor. Only when it became clear that I, at a minimum, needed to know what was wrong with me did I visit a MD. Even then, when the OB/GYN suggested endometriosis as a strong possibility, I did not pursue Western treatment. I thanked her for her time and informed her I would be “curing it naturally” as “doctors don’t help”. True story.
I would spend the next 10 months getting worse every month. Within a few weeks, I was dependent on my husband for his assistance in normal daily routines. You know, things like walking from our bedroom to a basically adjacent bathroom. Despite this, I spent the last half of 2009 and the first half of 2010 forking over hundreds (if not thousands) of dollars for an impressive arsenal of herbal remedies, dietary changes, chiropractic visits, massage visits, you name it, I can almost guarantee I tried it. When I finally broke down and had surgery, the surgeon informed my husband that, as a direct result of endometriosis which was found in multiple locations in my pelvis, my appendix was grossly abnormal and would have resulted in emergency surgery by that weekend. My surgery was on a Thursday. 48 hours away from emergency surgery. That’s how effective the “natural” raising and a year’s worth of natural remedies and the “endo diet” were for my pelvis. And yet, I still went through a period of “self blaming” complete with a sense of “failure” and “if I had only tried harder”, before growing as an individual and realizing that I DID do everything I could. Including seeking out actual treatment for my medical condition. Expert excision on June 24, 2010 completely, totally, wonderfully forever changed my life. Imagine my disdain when, years later, I watch the film that is the “best thing yet” and, instead of having my experiences validated, I am given a message that I should have swapped out my shampoo and exercised more. Shut. the. front. door.

I truly wish the filmmaker could have seen the look on my husband’s face.
Because it wasn’t only my experience, but also his that were invalidated by this film.
My amazing, supportive husband was my caregiver for a year during what was the beginning of our marriage, and he saw things no husband should have see his wife go through. Years later, he attended this screening that is marketed as bringing awareness to endo, and well, let’s just say he was pretty pissed off when we left.

Honestly, the biggest issue for me with EndoWhat? is really simple:
The first half CRAMS a basic description of the condition, a few personal stories,  the need for earlier diagnosis/intervention, the suggestion to see a specialist … and then an amount of time equal (possibly greater than? it certainly felt that way) to ALLLLLLLLLL of those topics COMBINED is given to what could arguably be called “woo”. (And that’s coming from a former wooer). The ratio of time spent on each topic is what leaves the viewer with the overall takeaway of how important that individual aspect is, and in this case, the ratio is horribly unbalanced. This is the reason that the parting message is so disappointing. The film could have been easily improved by spending more time on awareness, key facts about the disease, and more on what SCIENCE has shown us is effective, with a shorter block of time allowed to include dietary, herbal, and alternative *complimentary* therapies.
It all comes back to the fact that this documentary claims to show us the most up to date, science backed information on the disease and it spends more time on (admittedly understudied) aspects than focusing on what we do actually know as FACT. Plain and simple. Do those alternative aspects deserve more research? Certainly. Until that research is done, however, if we are going to have a movie that purports to show us what science knows, then that film need to focus on ya know, science.

Now, surgery is not a cure all. To be fair, natural remedies do help lower symptoms and inflammation for some, so they are worth a mention in the conversation. I am a huge yoga fan. I’ve also been through pelvic floor physical therapy which I recommend for every woman in existence – pelvic conditions or no. Alternative methods are excellent “add ons”. But that’s what they are. Add ons. I’ve never seen literature that would suggest that any “diet” or herbal remedy has the ability to eradicate the disease itself. The absolute best possible scenario with dietary or herbal measures is a reduction in *symptoms*. This means that while you may feel better, the disease is still inside ruining your pelvis/organs. And, if you’re like me, you might not even get symptom and inflammation reduction.

I’m not convinced that this documentary really does that much good for awareness given the (fairly heavy?) implications that women not only somehow caused themselves to have the condition, but that they can magically fix it themselves. Certainly seems like for each step forward, we possibly took a step backwards. I’ve already met quite a few women who have spoken of family members watching the film, running with the “woo” and using it to justify their lack of support for the endo warrior in their life. I can easily see this repeating itself globally. Anyone who knows me knows that I am a HUGE proponent of patient involvement, in being an educated and informed patient, in patient responsibility, but this takes it too far. The term “below the belt” comes to mind. Pun acknowledged.

Final Thoughts:
EndoWhat? left me feeling sad. Overall, my husband and I left the screening with an immense feeling of overwhelming disappointment that it’s 2016 and this is the best that we can do. I’ve heard that there is a follow-up film in the works. Fingers crossed. As a community, we deserve better.

About the author:
Rebecca Gibson is a surgically diagnosed endometriosis warrior who calls it like she sees it. She’s a wife and a mommy to a post excision miracle baby. She previously spent nearly a year curled up in the fetal position – all while steadfastly insisting that there must be a natural “cure” – before finally having her life restored with expert excision surgery in 2010. Nearly 5 years after her excision, she developed symptoms of another condition and had pelvic surgery – there was no endo to be found. She remains 6 years endo free today – despite living in the USA, dying her hair and occasionally using bath towels.