Reflections from a therapist: Endometriosis Collective Documentary

Recently, I decided to watch the new documentary about endometriosis created by the Endometriosis Collective. It features several famous figures who live with endo and openly share their experience with symptoms, surgery, diagnosis, and beyond. They come from a variety of backgrounds and fields, and include Amy Schumer, Brittany Brown, Janel Parrish, Folake Olowofoyeku, Julianne Hough, and stories of Marilyn Monroe. The documentary was created by filmmaker Sammy Jaye, co-founder of the Endo Collective.

As a therapist who works with clients living with endometriosis, hosts endometriosis support groups, and lives with endo myself, I wanted to share some reflections about my big takeaways from the film. This film brings up so many important and powerful points that must be understood better by the general public.

Chronic Pain & The Brain

The most impactful moment in the documentary for me was the discussion of how chronic pain shows up in the brain. The filmmaker, Sammy, receives a series of brain scans while looking at visual stimuli. These scans are then compared to the brain of someone without chronic pain. You can visually see the different areas of Sammy’s brain that light up, which in a “healthy” brain, do not. This demonstrates that on a physiological level, when you live with chronic pain, your brain literally works differently.

For people with endometriosis, there is often pain in the body occurring for many years, typically starting in the teenage years. Individuals diagnosed with endo as adults, often looking back, report such significant pain with their periods that they missed school due to such intense pain. Many develop other pain and symptoms as well that may flare or be consistent outside of their periods. This amount of pain and suffering does not occur in isolation and can have deep and pervasive impacts on a person’s quality of life. To see this film address the changes that occur in the brain and body is incredibly validating and empowering to those living with chronic pain.

Medical Gaslighting

Another thing that really stood out to me from the documentary is the amount of medical gaslighting that women often experience surrounding period pain. Multiple individuals speak to this- their pain being dismissed as normal, medical recommendations that totally ignore the root causes, and an overall lack of understanding from the systems they exist in. Most people living with endo symptoms go years without diagnosis or even having a doctor take them seriously. By the time someone finally listens and provides excision surgery, their endometriosis lesions are growing throughout the body on multiple organ systems and have significantly impacted their life.

Many living with endometriosis, chronic pain, and chronic illnesses also report a lot of overthinking, self-doubt, and questioning their own bodies. They’ve been told repeatedly that their pain is normal, their pain is not cause for concern, or even that their pain is in their head. Those responses can really get in their heads and cause them to doubt whether they’re actually experiencing these symptoms. They might become less likely to share what they’re feeling and even try to hide pain/symptoms from the people around them due to shame or fear of not being understood.

Range of Experience

While so much about endometriosis is a shared experience, every individual’s symptoms and pain can show up differently. In the film, we see Julianne Hough perform a very physical dance only days after her endo excision surgery. We also see Brittany Brown, an Olympic athlete, take several months to fully recover from her surgery. And we also see the filmmaker, Sammy Jaye, struggle so significantly with her endometriosis pain that she has to leave college. A huge takeaway here is how truly different each person’s experience is despite living with the same diagnosis. Some people with endo may experience symptoms so pervasive that their functioning is completely impacted and they cannot work, live independently, or contribute to their own life in the ways they want. This can be such a dark place and can come with a lot of mental health difficulties as well. Other people may experience primarily painful periods and don’t feel that their daily functioning is impacted. The most complicated part of this is the intensity of symptoms don’t even accurately represent what’s actually going on internally, and sometimes those with the most progressive cases of endo may experience the least intense pain/symptoms.

Societal Judgement

Hearing more about Marilyn Monroe’s story was very powerful. The sense of judgement and expectation she received is so shameful and disappointing. For someone so much in the public eye, it can be devastating to be viewed in such a way when you’ve worked so hard for your success. Despite always fighting through her pain, being seen as “dramatic” completely invalidates the way she had to hold it together at every turn. I can only imagine the internal struggles she had to live with and how much she was pretending to be okay. This also makes me truly wonder how many women with chronic pain and illness have received this type of treatment both in the past, and unfortunately still today. Many women experience painful periods, without acknowledging that no amount of pain is normal, but the body’s way of signaling that something is wrong. Instead of being listened to, believed, and evaluated, most women are told that they need to take a painkiller and deal with it. I can only imagine how much pain could be prevented if we were just heard and believed the first time, and given adequate care and treatment.

The Power of Women

The most emotional impact from this documentary was the absolute strength and power of the women involved. They survived so much, pushed through the pain, and accomplished truly incredible things. Witnessing what this filmmaker was able to put together despite everything she was going through was amazing. Not to mention the performances that many of the involved professionals were able to do when they were in pain. They should never have had to do this. And yet, they succeeded in huge ways. While that standard is unrealistically high, it does serve as a powerful reminder of what women can accomplish despite the most difficult physical circumstances. It also reminds us that so much can be going on behind the scenes for someone that we might never know.

This documentary should serve as a reminder to all of us that women’s pain should be believed and taken seriously… every. time.

Therapy for Endometriosis

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Elizabeth Allen, LCPAT, LPC, ATR-BC

Creative Pathways Counseling