EMDR Therapy Quarterly

Introduction: What is endometriosis?

The endometrium is the tissue that lines the inside of the uterus (from the Greek endo, ‘inside,’ plus mētra, ‘uterus,’ related to mētēr, ‘mother’). Endometriosis is commonly described as when endometrium-like tissue grows outside of the uterus, often around the fallopian tubes, ovaries, or other locations in the abdomen. These cells can bleed internally, but without anywhere for the blood to go, they can cause debilitating internal pain. However, a more accurate description of the disease would be that it is a systemic inflammatory condition that is both chronic and progressive and whose presentation and symptoms vary widely; no two cases are identical (Heather Guidone, personal communication, April 16, 2021).

An astounding one in ten women and transgender individuals who menstruate suffer from some degree of endometriosis, and it is a leading cause of infertility (Harris et al., 2018). This is the same percentage of people who have diabetes, equating to 176 million people worldwide, larger than the size of the eighth largest country. Yet, endometriosis is rarely talked about. As a result, it takes an average of seven to 12 excruciating years for individuals to receive an accurate diagnosis, often experiencing medical trauma in the process (Jackson, 2021). With such high rates, the economic impact on society is enormous. It is estimated that the cost to the U.S. economy, alone, is a staggering $119 billion per year (Fischer et al., 2012).

A clear understanding of the causes of the condition or an outright cure has not yet been established (see here for relevant papers). What is known is that there is a strong relationship between childhood physical and sexual abuse and endometriosis. Research shows that individuals with severe to chronic abuse have a 79% higher risk of developing the condition (Harris et al., 2018).

EMDR for pain

Eye Movement Desensitization and Reprocessing (EMDR) was originally developed to treat posttraumatic stress (Shapiro, 2018). However, there is now a significant body of research on using EMDR to treat different kinds of pain. EMDR’s effectiveness has been researched on specific kinds of pain, including phantom limb pain, chronic pain, cancer, and medically unexplained symptoms (see here for relevant papers).

However, despite their wide prevalence, there has been little research focusing on dysmenorrhea and endometriosis (Valedi, 2020; Fletcher, 2018).

Method

This paper will offer a narrative description of the client’s evolving cognitions, self-concept, and consciousness regarding her relationship with pain, shame, and self-care. The methodology used in presenting this narrative is portraiture, a qualitative research method developed by sociologist Sarah Lawrence-Lightfoot (Lawrence-Lightfoot & Davis, 1997). Portraiture combines elements of traditional ethnographic methods with literary narrative principles, including the goal of providing a systemic perspective; the use of ‘thick description’ designed to immerse the reader in the individual’s experience and meaning making; the inclusion of the researcher’s first-person experience as data; exploring the universal in the particular; and identifying potential causes of positive outcomes in the system.

Portraiture was selected as the methodology because its narrative structure is well-suited for presenting an individual’s evolving psychological experience as well as the inherently relational nature of psychotherapy. From the perspective of a general audience, portraiture can be thought of as ‘research as storytelling’.

My client’s details have been changed to protect anonymity, but she has given her consent for this report to be written and published. The narrative portions have been published online previously (Pruyn, 2021).

Client history

The client was referred for adjunctive EMDR treatment by her primary therapist after several years of talk therapy. The client’s presenting issue for EMDR was extreme anxiety while driving as a result of an accident she had at the age of 18. She had been a passenger, and she thought a family member had died. History-taking also revealed complex developmental trauma that included: her mother was an alcoholic and had an affair; her parents divorced; a younger sibling had a chronic, life-threatening medical condition; she had an undiagnosed learning disability in school; as well as multiple, diverse medical traumas. It was only in the course of treating these childhood traumas that she disclosed she had suffered from acute endometriosis pain since her teenage years, resulting in frequent missed days from work.

The client’s treatment began with 17, 50-minute sessions, which was focused on history-taking, psychoeducation and resourcing. These sessions occurred at the start of the COVID-19 pandemic, so some sessions focused on general psychological support. Developmental trauma targets then began to be reprocessed over 12, 50-minute sessions using the standard EMDR protocol. At that point, the client mentioned her acute period pain and history of endometriosis as an issue for the first time. Her period pain was then targeted using EMDR pain treatment principles based on Grant (2010) for six sessions. After these six sessions, standard reprocessing of her original trauma history resumed.

Narrative

Shauna initially came to me for the anxiety she experienced while driving. She works as a school teacher, and is in her early 30s. During her intake, she mentioned that she also had a variety of chronic health issues.

Seven months into treatment, she disclosed that one of these chronic issues was period pain. But it wasn’t until she described bracing herself for her upcoming ‘pain day’ that I understood just how bad the pain was. She then explained her life-long history of endometriosis, often having to leave work because the pain was so bad. Before receiving a diagnosis, she described being given the equivalent of a shrug by most of her male doctors and labelled ‘sensitive’.

Trying EMDR

I then suggested we try EMDR on this pain. I reminded Shauna that I was not a medical doctor and there could be no guarantee that EMDR would work on physical pain. However, based on what she had told me, I thought it might lessen the pain. Having suffered so long and found EMDR already helpful in other areas of her life, she was eager to try anything that might help.

We decided to use her worst memory of her lying on the bathroom floor in pain as the starting point for reprocessing. Shauna identified that the negative belief underlying how she thought about her pain in that moment was, ‘my body is bad.’ A positive belief she would prefer to have instead was, ‘my body is good.’

Over the course of the session, Shauna began to piece together her personal history of menstruation. She recalled how, growing up, menstruation was a taboo topic in her home. The first time she talked about it in depth with her mother was after she got her first period – and then she waited two days to tell her mother because she was embarrassed and afraid that she had done something wrong. Like many women, she was raised to be ashamed of menstruation and that one of her jobs as a woman was to make sure that no man ever knew when she was having her period. Some characterise this as a ‘culture of concealment’ around menstruation that exists in most societies around the world (Fabianova, 2010). As Shauna put it, “I didn’t know I needed to talk about this.” Adding endometriosis pain to this picture only intensified her feelings of isolation, self-blame, and self-loathing.

At one point during reprocessing, Shauna spontaneously saw an image of her present-day self, bending over her past self, lying on the bathroom floor trying to comfort herself. I asked, “Is there anything you’d like to say to your past self?” She said, “Be gentle.” At the end of the session, I asked her what her main takeaway from today’s processing was. She said,

If the body I’m in now is good, then the body on the bathroom floor is good too.

The next week, I asked if anything felt different about her period pain this month. She said that while her pain had been average this week, what felt different was giving herself permission to be gentle with herself. All her life, her strategy for dealing with period pain had been to try and ‘push through’ her day as if nothing was wrong. It was a novel idea that there were other ways to cope available to her.

After a second reprocessing session, she said she was beginning to believe that her body was good.  As a result, she was paying more attention to what her body was telling her, including in other areas of her life, for example, when it was telling her to go to sleep. An unexpected result of this shift in mindset towards self-care was that she said she was beginning to believe “I matter.” As she said this out loud, she teared-up. So did I.

Progress

A few weeks later, right at the start of the session, she blurted out that she was in pain and wasn’t sure if she would be able to make it to the end of the session. I asked her again if she would be willing to try processing the pain, and she agreed. After a brief breathing exercise, I asked, “If the pain had a colour, what colour would it be?” She said, “red.” “And if you characterised the pain with a single word, what word would you use to describe it?” “Fiery.” I then asked, “If the pain had a shape, what shape would it be?” She said it was like “pointy triangles.” This time we used the “red, fiery, pointy triangles” in her abdomen as the starting point for reprocessing.

During this reprocessing session, for the first time, she had an image of putting a sheepskin rug on the bathroom floor so it would be more comfortable. By the end of the session, she said there was still pain, but it had lessened and it felt duller and more spread out than a single point of spiky pain. When I asked what insight she would take from the processing today, she said she realised for the first time that the pain wasn’t punishment for something she did wrong; it was just something that was happening to her body.

The next time she experienced an onset of pain at work, she went to ask her department head how she could lighten her workload that day and gave herself permission to go home if she needed to. At home, she had a ritual of eating her favourite kind of chocolate with a weird-tasting herbal tea that was supposed to help. While she didn’t end up leaving work that day, she was surprised at how much better she felt simply having had that conversation and having a specific plan to take care of herself if she needed to.

The next week, we processed the pain again. This time she described the pain as being “purple, triangular, scratchy and hot.” After the first set of eye movements, she said she now saw the pain as little toy soldiers attacking her. On the next set, she imagined telling the soldiers that she was not the enemy.

Her ending insight for this session was that taking care of herself is scary for her, but she now understands its importance. She reminded herself to be gentle with herself and that “the pain feels like it’s a part of me rather than attacking me.” This resulted in a shift: “I feel like taking care of my body somehow, rather than being mad at it.” She felt like giving herself a hug. She concluded: “Before the session, it felt like the pain was first and I was second. Now I’m first, and the pain is just something that’s happening.”

New insights

Shauna began a subsequent session by launching into a cascade of new insights. She started by sharing that she had accumulated a large amount of unused personal time at work and, for the first time, was giving herself permission to use it whenever she wanted to. One day this week, she spontaneously decided to arrive at work an hour later than usual. She had never done that before.

She had also uncovered a critical, unspoken belief from her family that she had internalised so deeply that it had been a barrier to engaging in self-care all these years. Growing up, she was taught that being weak was the worst thing a person could be. As a result, “listening to my body would have meant acknowledging that I’m sick, and sick people are weak.” Having desensitised and reprocessed the memories associated with her period pain, she was now able to see, “I’m not ‘a sick person’. I’m a person who sometimes has pain. It has nothing to do with anything else.”

Finally, she realised that one reason her shame around menstruation had persisted all these years is that period products are not available in many public bathrooms. What society hides, we are taught to be ashamed of. She felt inspired to advocate for making them available for free at her workplace.

Looking back over the full arc of our work together, Shauna reflected, “When I first came to see you, I didn’t think I could do EMDR. I didn’t think I was strong enough.” “So, what do you think now?” I asked. “I’m a lot stronger than I thought” was the reply.

Shauna still experiences period pain, but she appears to have fundamentally altered her relationship with the pain as well as her body as a whole. She realised, “I will have choices even when the pain is worse.” She said this felt empowering and liberating. Regarding her relationship with her body, before processing, “I thought it was against me.” After our work together, she said, “My body feels like being at home.”

I ended the session with my favourite question: “So what’s your self-care plan for the week?” Shauna paused thoughtfully for a moment and then said with renewed conviction, “I’m going to listen to my body when it’s trying to tell me something.”

Treatment outcomes

In the year prior to treatment, Shauna reported that her peak period pain averaged eight on a scale from 0 to 10. For the 18 months after reprocessing her period pain, she reported that her peak pain averaged at four. Prior to treatment, it was normal for her to spend some portion of her period curled up on the bathroom floor in pain. Following treatment, she has been able to remain off the floor. Most recently, in addition to peak pain levels being lower, Shauna is reporting that the duration of the peak pain is also decreasing. Prior to treatment, she reported that it was not unusual for her peak pain to last as long as five hours, never less than a few hours. For her last two periods, she rated her peak pain a three and a four out of 10, with durations of the peak pain lasting 10 minutes and 30 minutes, respectively.

I asked Shauna if there was anything she would like to say to others who were suffering from the disease. This is what she said:

You didn’t do anything wrong. It’s OK to talk about it. It doesn’t have to be private. You can talk about it with whoever you want to. It would be cool to be connected with other people who have it, to have clinicians facilitate a community to talk about all the other ways it impacts your life, not just how many days you’re in bed. And to talk about the shame piece, naming how it’s viewed in society. Endometriosis is not the same as having diseases in other parts of your body, there is added shame. One of the things I’ve learned is: my body is good, healthy, and whole – and that is a drastically different way to view my body than a year ago … it’s so much easier to be me.

Discussion

Limitations to drawing conclusions in this report include the use of only one individual’s retrospective self-reports of pain; conflation of treating her complex trauma with her period pain; and conflation of adjunctive EMDR treatment with treatment by her primary therapist. Despite these limitations, the narrative suggests that the mechanism behind her reduction in pain was a shift in her consciousness regarding her relationship with the pain, her body, feelings of shame, and self-care that occurred during and after EMDR reprocessing of her pain. Given the prevalence and severity of the disease, its high correlation with trauma, the challenges of medical treatment and resulting medical trauma, and the strong track record of EMDR in treating different kinds of pain, these results suggest that using EMDR to treat endometriosis pain is a worthwhile avenue for further research.

Reflecting on Shauna’s treatment, a few points emerged that may be helpful in future research:

• Firstly, when offering trauma therapy to clients with endometriosis, it is important that clinicians make explicit that they are not implying that the pain is ‘all in your head.’ It should be made clear that the goal is simply to give clients more options for managing their pain by specifically treating the psychological component of the pain (Pruyn, 2024). This distinction is important because many individuals with endometriosis have experienced exactly such invalidating messages from medical providers over the course of their journey to a diagnosis.
• Secondly, to help therapists screen for endometriosis, we have developed three intake screening questions in collaboration with Heather Guidone, surgical program director at The Center for Endometriosis Care in Atlanta, Georgia. While in no way meant to provide an actual diagnosis of endometriosis, these questions are designed to serve as a conversation starter as to whether the client has pain issues that correlate with endometriosis. When I shared these questions with Shauna, she said she would have found them helpful during an intake because it would never have occurred to her to talk about her periods with a therapist. As a result, the hope is that by asking these questions at the start of treatment, clients would feel more supported in disclosing their period pain with their therapist, even if the therapist is male.

There are two additional reasons why I think this research is important. The first is to raise awareness within the EMDR and medical communities that EMDR can be a viable treatment for period pain. Second, given the EMDR community’s long history of advocacy for trauma survivors, I believe it is well positioned to help reduce the silence, stigma and shame surrounding endometriosis.

Acknowledgements

I would like to express my profound gratitude to Deborah Korn, Heather Guidone, Heena Chudasama, Nicola Pinder, and the multiple EMDR colleagues who have encouraged this article’s journey to publication. A very special thanks to Shauna for her courage to share her story.

Peter Pruyn ("prine"), LMHC, is an EMDR Consultant and Facilitator in private practice in Western Massachusetts who works with female survivors. He has a research interest in using EMDR for women's health and is the author of Peter's Psycho-Ed Handouts for Trauma, EMDR, and General Psychotherapy, 3rd Edition. He writes about trauma recovery, women's health, and gender equality at peterpruyn.medium.com. He would enjoy hearing from colleagues who are doing related work at pwp04 [at] icloud [dot] com. Positionality Statement: "I identify as a White, European-American, heterosexual, cis-gendered, middle-class, able-bodied male. I am drawn to qualitative research because I believe stories are the most effective means for building bridges between disparate lived experiences. I see my purpose as a researcher to tell the stories of those whose stories aren't being heard. As a male trauma therapist working with female survivors, I have come to believe that gender equity is the most potent lever for positive change for our species. A fundamental challenge of my conducting this research has been overcoming my imposter syndrome as a man doing this work and trying my best to be an ally."