by Lauren Kraig, GoodTherapy.org Content Editor

Endo Warriors: What We Wish Our Therapists Knew

March is many things: college basketball playoffs, the beginning of spring, Women’s History Month, and spring break season. But it’s also Endometriosis Awareness Month, making now a great time to talk about the connection between endo and mental health.

Endometriosis, or “endo,” is a medical condition that occurs in about 11% of American women between 15 and 44.[i] On average, it takes 6-11 years from the onset of symptoms for someone to be diagnosed with endometriosis.[ii] Definitive diagnoses are only possible through surgery, which is done laparoscopically. There are two major ways to remove endo during a laparoscopic procedure: ablation and excision. Excision is considered the gold-standard treatment for endometriosis[iii].

Awareness

Eleven percent is a lot of women. Many celebrities and influencers with endo make a point of speaking out about their experiences endo, including Mae Whitman, Emma Roberts, Kayla Itsines, and Halsey, who have all been in the news this month for Endometriosis Awareness Month 2021.

Endometriosis Awareness Month was created as a way to improve outcomes for people with endo. By raising awareness, we can reduce stigma, increase the likelihood of someone being diagnosed in a timely manner, equip women to advocate for themselves, and create opportunities for people suffering from these symptoms to connect.

It’s Personal: My Story with Endo

Many of us experience debilitating endometriosis pain at least once a month. For some, like me, the pain can be debilitating for most or all of each month. My experience with endo was exhausting, heartbreaking, and traumatic. I suffered from endometriosis-related pain from ages 12-31. I was unable to work a full-time job for five straight years. At times, I was unable to drive or even sit in a chair.

I had four surgeries for endometriosis, and, although they helped alleviate my symptoms temporarily, only the final one (an expert excision) restored me to full functioning: working and playing every day without pain for the first time since I was 11.

You don’t need to know all the details about my condition to understand that, from 2012-2016, I was in tremendous pain most days. Not surprisingly, being in intense pain so much of the time led to overwhelm, exhaustion, anxiety, and depression — mental health concerns are common in people who suffer from endo.

A Mental Health Crisis for People with Endo

Endo is an invisible illness. Sufferers often hear, “But you look fine!” from well-meaning friends and family. Combine that with the debilitating pain, difficulty working or accomplishing tasks, and social isolation that often accompany endo, and you’ve got a recipe for a mental health crisis. In 2019, BBC UK published its findings after talking to more than 13,000 women with endometriosis, which included the shocking discovery that about 50% of them had experienced suicidal thoughts as a result of their symptoms related to endo[iv].

It’s clear that the mental health concerns surrounding endometriosis are significant. Therapy with a supportive clinician can make a huge impact on the lived experience of endo warriors (which is what we call ourselves, because, hey, this is a battle).

If you’re struggling with endometriosis or another chronic illness and would like support, please search for a therapist near you who can help you navigate this difficult journey. You don’t have to do this alone.

5 Things We Wish Therapists Knew

1. It’s not just about fertility.

The implications of endo for fertility vary from person to person, but it’s not uncommon for women with endometriosis to have issues around fertility. That said, endo isn’t just awful because of the way it impacts our reproductive capabilities. Some of us do have to grieve that we will never be able to have biological children we carry to term, true, but many of us are able to become pregnant and deliver babies. And there are plenty of us who aren’t interested in ever having children, completely independent of their endometriosis. It’s not uncommon, though, for the way we talk about endo to center on fertility issues.

The truth is, endo presents hardships beyond infertility for many of us. It can affect our sex lives, our work lives, our social lives, our independence, and our emotional state. It can mean persistent, incapacitating pain, a constant threat of having to change plans last minute because of worsening symptoms, and feeling overwhelmed by even the smallest tasks. These are things we want to talk about.

2. We feel betrayed by our bodies.

One of the most frustrating things about living with endometriosis is the disconnect we feel between ourselves and our bodies. When it seems like your body has betrayed and is trying to hurt you, when nothing you’re doing puts a dent in your symptoms, it’s hard not to feel like Sisyphus, doomed to strive for a rest you cannot reach. You may — like I did — even grow to hate your body for its brokenness. Talking about and healing our relationships with our bodies may be challenging, but unless we do, we’re likely to be our own enemies for life.

3. We have to vigilantly advocate for ourselves.

Historically, women have been regarded as melodramatic, over-the-top, emotional basket cases who make a big deal out of nothing. Traces of this attitude persist in the medical field, and many struggling with endometriosis symptoms are not diagnosed for many years because their doctors don’t believe they’re reporting a real problem. Call it medical gaslighting.

On top of this, the medical field at large has not caught up with the research on endo. This means we have to be the ones doing our homework and advocating with our medical care team on our own behalf. We have to be experts, and we sometimes have to go toe to toe with doctors to get the care we need. This is hard, because, by nature of their extensive training, doctors are often intimidating. We want you to understand what we’re up against and how important it is for us to be brave.

An Uphill Battle for Endo Warriors

According to retired nurse Nancy Petersen, who experienced endo firsthand and runs an endometriosis educational and advocacy group, the medical field has a long history of not taking women’s medical concerns seriously. She gave me an example of this from her own experience:

When I was managing the endometriosis Treatment Program in Bend, Oregon (now closed due to retirements), 75% of the patients who came for care had been dismissed as neurotic in a survey I was running. This was consistent with Kate Weinstein in her book Living with Endometriosis. Yet they all had endometriosis diagnosed by independent, board-certified pathologists on samples submitted by Dr. David Redwine. This attitude that pelvic health is a mental health issue is offensive, misogynist, and clearly off the mark. Transgender patients report even greater pressure to be taken seriously. The attitudes in medicine cause us to doubt ourselves in the face of serious, severe peritoneal quality pain.

Petersen is spending her retirement vetting specialists for her famed Nook Doctor list and equipping people around the world who have endo with the knowledge needed to advocate for themselves and their care.

4. Our medical options are often limited by physicians.

Physicians hold the keys to the kingdom when it comes to medical interventions. There are good reasons for this, but sometimes this gate-keeper status is problematic because even doctors make mistakes and have biases. Here are a few examples of how this affects women with endo:

• Endo patients are often counseled to postpone surgery until they’re ready to start trying to conceive, even if they’re experiencing debilitating pain.
• Women with endo are often counseled to have their healthy appendices removed. This is to mitigate risk: in multiple instances, ER doctors have misdiagnosed appendicitis as pain due to previously diagnosed endometriosis and the patients died.
• Some doctors refuse to perform fertility-affecting procedures for some patients with endo, often citing the patient’s youthful age and/or their lack of a partner as the motivation for this denial. Even women who intend to never develop long-term relationships or have children are deemed unable to make these decisions for themselves.

Whether we came to this struggle with resilience like armor or had to grow it along the way, we endo warriors tend to be plucky and determined. We are strong, capable, intelligent women who can make medical decisions for ourselves.

5. We face unique challenges because endo is invisible.

We often feel defined by our medical condition. In many ways, the chronic pain of endo limits our lives. We may be isolated, feel useless, and despair because this feels never-ending. We want you to know that we may need help understanding and valuing ourselves outside of this limiting pain.

The invisibility of endometriosis may also put us in a defensive position. We may feel the need to justify our current activity level, pain, or exhaustion to colleagues, bosses, partners, friends, and family. Constantly being told, “You look fine,” can be perceived as judgment because we don’t feel fine.

3 Ways Therapists Can Support People with Endometriosis

1. Take us seriously.

One of the best ways to help us is to remind us that we have the right to be heard and that our experiences and feelings are valid. Suffering alone, especially when the medical support we should be able to rely on isn’t providing the help we need, makes us doubt ourselves. Help us learn to trust ourselves by not just listening to us but by believing us.

2.  Inspire us to define ourselves in ways that transcend our illness.

Living a life limited by our endo can make us feel trapped. It’s hard to see past our pain. Ask those probing questions you’re so good at to help us think about our whole selves, to see our value and worth, to reorient our self-definition so it’s not bound by our suffering.

3. Help us create an emergency plan.

Chronic pain can make anyone desperate. If you deem it appropriate, help us create a plan for what to do when we feel overwhelmed by desperation or despair. For me, the plan was to drink a Dr. Pepper I kept in the fridge and call my therapist. Just having a plan — however simple — can stave off the need for it, and, if we get to the point where we need to use it, we’ll know what to do.

You Can Make a Difference

The difference you can make in the life of someone suffering from endometriosis is significant. We need to be heard and accepted, we need to be encouraged that we are more than our pain, and we need to be met with deep compassion. Thank you for being there for endo warriors like me and helping us survive our struggles and grow.

References

[i] Office of Women’s Health. (2019, April 01). Endometriosis. Retrieved March 16, 2021, from https://www.womenshealth.gov/a-z-topics/endometriosis#:~:text=Endometriosis%20is%20a%20common%20health,the%20United%20States%2C%20have%20endometriosis.

[ii] Mackenzie, M., MD, & Royce, C., MD. (2020, June). Endometriosis: A common and commonly missed and delayed diagnosis. Retrieved March 25, 2021, from https://psnet.ahrq.gov/web-mm/endometriosis-common-and-commonly-missed-and-delayed-diagnosis

[iii] Treatment: The gold standard. (n.d.). Retrieved March 16, 2021, from https://www.efhou.org/treatment-the-gold-standard

[iv] Endometriosis: Women ‘taking their own lives’ due to lack of support. (2019, October 07). Retrieved March 16, 2021, from https://www.bbc.com/news/uk-wales-49933866

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