Witnessing Pain & Holding Space

Women supporting women. Witnessing Pain and holding space. Pelvic pain and endometriosis needs support.

Witnessing Pain & Holding Space

When you first asked me to dig deeper and bring the story of pelvic pain due to endometriosis down to individual stories — Jessamyn, Aileen, and Esmerée — even with my own experience, I didn’t quite know what that was going to look – or feel – like. It’s made me realize, more than ever, that women need to share their stories. Women need community and support around their reproductive health because our culture and system are too often not there for them. Women need talking about menstruation and the myriad complications that can exist for a woman’s reproductive system to no longer be taboo because there are so many more stories to tell.

What I want to focus on in this post are the witnesses to pelvic and endometriosis pain. I want to share some of the conversations I’ve had with the mothers, partners, sisters, and caregivers about what it’s like to helplessly witness someone they love be in severe, cyclical and chronic pain.

The Mother

Sara Knight, LMHC counselor and mother to an endometriosis pain sufferer.
Sara Knight, LMHC offers concierge-style counseling to people in their homes, in the community, or through video meet-up. Sara specializes in mindfulness-based practices for a variety of issues including anxiety, depression, peri- and post-partum depression, borderline personality disorder, sobriety and couples counseling. She is also passionate about connecting her clients to the natural world in ways meaningful to each individual.

Sara Sprague Knight is Esmerée’s mother and a force of both support and advocacy. She herself has never had debilitating period pain. But, she’s found herself the mother of two daughters who suffer from severe menstrual pain, assumed to be endometriosis (neither daughter has had surgery to definitively diagnose).

The first time Sara witnessed the severe pain was when Esmerée called Sara at work requesting her to come home. Esmerée is a creative artistic young woman with a flair for drama, so Sara initially thought Esmerée was exaggerating. But, Sara agreed to come home and when she did and saw her condition, it was obvious to her that Esmerée was in true pain.

“I was shocked! I’ve never experienced anything like that. I’ve never had cramps that sent me home from anything that I was doing.”

Sara didn’t know what to do other than to take her to the ER because it was clear she needed help managing the pain. However, at the ER for the first time, Sara felt like they weren’t listening to her. She felt they were being dismissive by treating Esmerée as if she was just being an overly-dramatic teen who couldn’t handle her period cramps. “I felt I needed to say, ‘I’ve been working as a doula for 13 years. I’ve helped women in childbirth and seen a lot of women in pain around their reproductive organs. My daughter is in a LOT of pain.’”

The entire experience was frustrating for both of them. Sara is sure Es had thoughts and feelings like, ‘You’re my mom. What do you mean you don’t have the answer?!’ And as her mother, Sara was frustrated to not be heard and to experience feeling helpless around her daughter’s pain. Sara understood there was little to nothing, in reality, that she could do other than get her medical attention, so she had to make peace with that frustration.

The Partner

Mike, my own partner and husband, freely admits he thought I was being dramatic and exaggerating when he first witnessed me experiencing a menstrual cycle. I am a dramatic woman, which, in Mike’s words, is one of the (many) reasons he loves me … but it did allow him to initially doubt the severity of the pain.

Mike and I playing in the rain at King Richard’s Faire … where we met and where we celebrate “us” with our good friends every year.

He told me, “I come from an interesting family full of people who actively try to prove just how well they can ignore their pain. That naturally made it harder for me to really understand the kind of pain you were in, and just how debilitating it was. I slowly learned better.”

And over the years and unable to offer a real solution to my pain made Mike feel helpless:

“I, like so many other men, are goal-oriented and solution-focused. If there’s a problem, there’s a responsibility to fix it, right? In this case, there was nothing I could fix, nothing I could offer to make the pain stop. When you love someone, whatever the relationship, watching that person suffer is excruciating. The fact that I had no experiential knowledge of similar pain made it difficult to understand the variances in what you experienced.  The fact there was really nothing I could do to ease your pain added to the helplessness I felt.”

Although we didn’t meet until I was 40, Mike’s been around long enough to have witnessed and supported me through a couple pelvic surgeries, one of which was my complete hysterectomy. When I was ready to contemplate that surgery, Mike accompanied me to my consult and heard from the doctor’s own mouth that my experience was long and difficult and a hysterectomy made sense; I think that moment truly drove it home for him. I know he was concerned about surgery as it’s always a risk, but hearing from the doctor made him fully support the decision — he didn’t want me in pain anymore, either.

A Medical Caregiver

Christy Ciesla, Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital, treats pelvic pain and endometriosis pain.
Christy Ciesla, Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital says that 70% of her practice is treating women with pelvic pain. She wants women to understand how complex pelvic pain can be and that treatments are different for different situations. She strongly feels that providers need to look at pelvic pain as a whole woman issue —physical, mental, and emotional.

I also talked with Christy Caputo Ciesla, the Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital in Providence, RI, to get her perspective on living with and managing pelvic pain. I learned enough that I wish I’d met her 15+ years ago! I met Christy after my hysterectomy and I almost wept at our first appointment because she gave me hope I could get past my post-op pain, which was a combination of a lot of scar tissue, stuck fascial tissue, and a hip injury (due to my surgery having me in stirrups for over 5 hours.)

When I spoke with Christy for this post, one of the facts she shared both fascinated and floored me. She explained how chronic pain “gets stuck in the nervous system.” It’s called centralized pain and when the brain and body are used to firing in response to pain, we “catastrophize” it and get to a point where a pain that is less severe may feel worse because the entire nervous system is on edge. Christy calls it the “anxiety monster” because it won’t leave you alone and you can’t turn off the thoughts which leave you feeling like the pain will never end.

Christy firmly believes that if someone is going to treat chronic pain—be it a doctor, physical therapist, mental health therapist, etc—then that person needs to educate him/herself in what works and what we know about pain and the brain connection. She feels we need to get better about referring patients out to the right people, especially primary care docs who are often the first stop, which means the medical profession needs to know their community so they know other resources that might be a solution for their patients—and refer out first before making the decision to have a major, invasive surgery. The surgery may be needed, but there are also women who may be helped with pelvic pain from the right pelvic floor physical therapist.

She also knows that too many women do not feel understood or heard when it comes to talking about pelvic pain. This is a problem because there are ongoing studies out there that show that if someone isn’t believed around their pain, or if they feel belittled, it can make the pain level increase.

Christy treats a LOT of different women—70% of her practice is treating women with pelvic pain. She doesn’t know the exact percentage of her patients who have endometriosis. She says endometriosis is so common that she doesn’t think about numbers, she just focuses on their pelvic pain in general that her patients are experiencing although many of her female patients with pelvic pain may be impacted by endometriosis … she’s seen many women post hysterectomy and/or post laparoscopic-discovery surgeries.

Christy wants women to understand how complex pelvic pain can be.  Treatments are different for different situations and providers need to look at it as a whole woman issue—physical, mental, and emotional.

  • Effects of endometriosis can present as a lot of scar tissue in the pelvis which affects physical mobility and function in general. Excessive tissue overgrowth, multiple surgeries, and adhesions can affect pelvic alignment, abdominal muscles, and the diaphragm, resulting in discomfort or pain beyond  the pelvic area.
  • With chronic pelvic pain, Christy  advises patients to think about how we guard against pain … think about how one’s posture changes, or the results of muscle spasms, or laying curled up fetal like, etc. … it will all affect pelvic function.
  • Treatment of pelvic pain can also bring complications: in surgery, women can be kept in positions for too long, creating muscular problems, as well as developing the scar tissue that will inevitably follow any surgery. These things coupled with all the other effects from endometriosis can affect a woman in unexpected ways.

Christy is committed to treating her patients to ideally get them past and out of pain, but at a minimum, never releasing them until they can manage their symptoms. She’s fortunate in her practice to be able to spend quality time with her patients and truly listen to them. She’s found that empathy is a key component. She finds that sharing—from both herself and her patients—help them feel validated in their experience. She will be involved in a research study that is combining physical therapy with mindfulness. Christy wants to explore this because there are studies that suggest that mindfulness based stress reduction (MBSR) can help manage chronic pain; when patients learn how important self-care can be for helping manage their pain. Essentially, loving and nurturing our bodies even when they’re not making us happy, can be of immense help.

Christy reports that once she starts talking to people about how to love their bodies, they can think about their body cooperating with them versus being the enemy; it’s a HUGE part of pain management because it can help change the hypersensitivity. Christy understands that with chronic pain, the instinct is to curl up and not move. “People become afraid of movement because when we injure ourselves, we know we need to rest and heal, but chronic pain is different and not moving is the worst thing you can do because it creates additional problems.”

“One thing I do for my patients is empower them to start doing things again so they learn how to move and manage around pain when it flares up, but also helping them understand that they can get to a place in which pain is lessened or eliminated. I also know one of the biggest things I can do is to simply let them know I’m there to support them—when they’re experiencing pain and when they’re not. This helps people stop feeling like they’re in a downward spiral and that they’ll never get better. They learn to understand that although their body is ‘misbehaving’, it can still work; it may be different, but they can do it and achieve a balance in their lives. I work to support the entire process.”

Treating the Whole Person

I think the bottom line is, when endometriosis moves a woman outside of simple menstrual discomfort into actual pain, we—women, doctors, families—have to have a long-overdue conversation … and thus our blog. 😊 This is a common problem. Sara wrapped it up for me quite well:

If women say they're in pain, we must believe them. Pelvic pain is real.“From a mental health perspective, we consider something diagnosable when it affects how you socialize, work, or care for yourself. If someone can’t meet that criteria, there is a diagnosable problem. It’s about impairment, so if you have pain that is a true impairment, we must talk about it, study it, and come up with better solutions. Yes, menstruation shouldn’t stop a woman from being out in the world and many women only experience minor discomfort, maybe a decrease in energy, or experience a change in appetite. But when menstrual symptoms go into a pathological arena, it’s time for a conversation.”

Sara also pointed out that it’s not just about how a doctor would assess a woman’s impairment, but rather about how a patient assess herself because pain is relative. If a woman says, ‘I’m not bleeding that much but the pain is so intense I can’t hardly stand up’ we have to believe them. It’s that simple. If we believe them, then we can start the process of healing the whole person.

As we’ve discussed, our conversation around endometriosis is clearly not complete. There are a LOT more stories to discover and hear. As women, we can share, listen, and support and hopefully start leading these conversations into our medical system and help more caregivers and support people insight as well as a desire to further study and come up with all around better treatment for endometriosis.

Here’s hoping …

Love,

Deb

Reflecting on Three Women’s Stories

Deb,

Deep thanks for interviewing Esmerée, Aileen, and Jessamyn and sharing their endometriosis stories.They’ve been courageous to share such difficult and intimate experiences. Over the years, when hearing the details of your experience, it left me feeling disappointed in our healthcare system that a condition so severe and so common didn’t have real solutions.

Hearing the stories of these three women only amplifies my disappointment. Although the interviews gave them the chance to finally tell their stories, they’d all had challenges being heard and believed by family and health care providers. None of them particularly felt ‘healed’ in any sustainable way and clearly we heard examples of where they were not honored and their dignity not preserved during help-seeking encounters. These three women highlighted for me how the standard for being heard, healed, and honored for endometriosis patients may be very hard to meet. It’s not that all providers are purposefully avoiding addressing those needs, but rather it’s because endometriosis itself presents in ways that our health system is clearly not designed to address.

As you were working on the interviews and posts, we discussed how heartbreaking it was for you to hear what they’d gone through, especially as their experiences were similar to your own. You also mentioned that each woman saw the opportunity to share her story to help inform others, but discovered in the process that they themselves felt some relief from having their stories heard.

I remember sitting in our college dorm rooms years ago talking about these topics — often realizing we had nobody else with whom to discuss these challenges, and how relieving it was to be able to share with each other. The three entrepreneurial women you interviewed amazed me with their creative problem solving and impressive navigation of their relationships, schedules, and lives while very few options were available that could reliably address their symptoms and experiences.

I’m blown away by each woman’s journey to get the help necessary to simply function throughout a monthly cycle and how precarious the solutions were across their lives. For me, with a relatively traditional cycle, there are highs and lows to manage that seem burdensome at worst and inconvenient at best. Imagining anything worse, as well as needing to communicate with friends, family, and coworkers about any bodily function sounds overwhelming.

Getting my head around the stories and experiences was a bit more awkward and uncomfortable than I expected. Hearing the realities these women face and bearing witness to someone else’s pain — even second-hand, took a bit of getting used to. It’s hard to look pain in the face — it makes me, and probably most of us, feel helpless.

I’ve worked in women’s health services on and off for years. I was sure I could handle any story, but your interviews gave me pause and the chance to really start to hear the stories differently, not just as a litany of symptoms, but to hear the stories in such a way that I could truly understand the experience, to understand how a woman’s chronic health issue affects her quality of life and to hear how isolating it can be to live with chronic pain, even if predictable on a monthly basis.

I feel deep empathy for women dealing with endometrial pain and symptoms — diagnosed and undiagnosed — because of this new understanding. When I had my two kids, I experienced postpartum depression and through it I learned, from watching those around me, especially my husband, that it takes unexpected effort to live with and support a person in chronic distress. The partners, family, and friends of women with endometriosis likely have equally important experiences and stories we should hear.

Most of us believe our health care will be directed by health-care providers, but the fact is, for these women, they needed to be the problem-solvers, finding and having agency where the health care system failed to provide true solutions for their chronic debilitating pain and they needed to enlist those around them to be advocates for when they are incapacitated; they needed to do that to simply function with predictable frequency.

The people who can truly hear these women’s stories are critical — those are the people who can and will honor women’s experiences. I think that as we progress with this project, it will be meaningful to delve deeper into what it’s like to be the partner, parent, or friend of someone experiencing pelvic pain and endometriosis. I’m curious to get more perspectives on the whole picture and I expect the voices of family, friends, and community can be a source of solutions — or at least support — for women with endometriosis as well.

The whole reason we started this project together is that we’ve witnessed each other’s health journeys and I’d like to explore the experience of partners, friends, and family if we have the opportunity. I think it will be helpful for us to interview the witnesses to women’s experience.

Thank you for completing the interviews and sharing Esmerée’s, Aileen’s, and Jessamyn’s stories and for exploring the power of sharing women’s health stories with me — your posts honor their experiences and your own.

With gratitude and admiration,

Liana

Pelvic Pain & Endometriosis at 19

Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist, Endometriosis Pain Sufferer. No official diagnosis.

Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist and endometriosis pain sufferer.Dear Liana,

I will admit that when I talked to Esmerée (“Es,” age 19), I was sincerely hoping I’d hear something new. She’s young and she has access to the Internet (which wasn’t much of a gleam in anyone’s eye when I was a teen back in the 80s), so I thought she might have more information or at least have found better support, etc.

NOPE.

Sadly, her experience was fairly similar to my own, leaving her feeling lost, with little good information and simply doing what she needs to do to function in the now.

The Beginning of Endometriosis Pain

Esmerée was 11 when she first got her period. She remembers experiencing pain before her menstrual cycle officially began. Starting about three months before her bleeding began, she felt monthly, cyclical pain that in hindsight was related to her periods.

By the time she was 13, the pelvic pain was unbearable.

For Esmerée, discomfort and pain showed up physically in different ways. Sometimes it was classic cramps — really bad cramps —  but cramps just the same. Other times, cramping became intense pain. She describes spending hours curled up or laying on the floor hot and sweaty as she tried to manage the pain. Es was fortunate in that she was home-schooled, so on bad days, she didn’t actually have to drag herself to school or be penalized for missing class. Es and her mother  could work around those times when she was incapable of doing schoolwork.

Esmeree SkyeUntil she was about 15, Esmerée thinks her Mom probably didn’t really know that her experience was something more than just bad cramps, which her Mom experienced sometimes, too. She says her Mom was always very open, but she but didn’t have any first-hand experience with which to understand what was occurring.

Esmerée says the turning point for her and her Mom occurred when she was 15. She experienced one of her worst menstrual episodes. Her period lasted eight days, was terribly heavy—practically hemorrhaging—and she was vomiting from the intense pain. She ended up in the ER.

“I was in the ER three times in three months for my period. I was sheet white, puking, and I couldn’t talk. Mom didn’t know what else to do but take me someplace that might be able to help me with the pain.”

After that, her Mom started asking the doctors what could be done. The ER was simply pain management and certainly not an actual solution. Es endured a lot of physical exams, blood work, questions, and ultrasounds, but nothing conclusive was showing up … it was a whole lot of questions with very few answers.

Endometriosis Pain & the Need for Advocacy

When Es first went to the ER, she says her Mom was the only one with a head on her shoulders. She herself was delirious with pain and really unable to communicate effectively with the medical personnel. And once she was given pain killers, even less able to communicate.

“Mom was always great about it. She always took me seriously and that was the biggest help. Having someone next to you taking you seriously is HUGE. She was able to tell the doctors, firmly and seriously, ‘No, she’s not being dramatic and this is a serious physical issue.’ But there’s only so much my Mom can do. She’s not a doctor, she’s my Mom … and, I think the bottom line is, I don’t think people listen to women when it comes to women talking about this part of our bodies.”

Esmerée understands that part of the communication and advocacy problem is that endometriosis is difficult to diagnose. She pointed out that it must be hard for a doctor or nurse to be helpless … they literally can’t solve this problem at this time. She thinks it must be tough for a doctor to recommend surgery to a teen as the only diagnosable option. It’s a hard choice from the surgical event, recovery, and cost perspectives.

Chronic Pain IS Isolating

I found it interesting that Esmerée, too, just like Aileen and Jessamyn, initially kept her pain to herself; she didn’t share it with her friends. I think I had the thought that because Esmerée is of a younger generation, she’d be much more open about it. It turns out, pain is isolating no matter one’s age.

Esmeree Skye Pain is isolatingEsmerée acknowledged that she kept it to herself partly because she felt helpless and fell back on blaming herself. She was mired in frustration because she couldn’t have the same social life her friends had. Not only were her periods painfully debilitating, they were irregular, so she didn’t always have notice that she would be in intense pain in a couple hours. She avoided the beach, parties … she was always afraid she’d be someplace and have a problem and be unable to manage it.

Esmeree Skye - The pain was totally consuming.

She says that her friends really didn’t understand what she was experiencing until they witnessed her pain directly. Esmerée shows a depth of understanding of how people think and react to difficult situations, and endometriosis is difficult.

“It freaks people out to see someone they know in that kind of pain. They don’t know what’s going on, and they don’t know how to figure it out, so they panic.  I’ve had people behave worse to me when just talking about it, but when they see what’s actually happening, they’ve been supportive.”

Esmerée mentions she’s had interactions with the medical system and those who work in it that range from dismissive to supportive. On her first ER visit, the nurse assigned to her didn’t appear to be taking Esmerée’s pain seriously, treating her as though she simply didn’t know how to handle some bad cramps. She felt belittled and dismissed. Her second visit was quite different. The nurse was supportive, but also blunt and upfront with her. The nurse explained that she couldn’t give Es any real good answers. She said that, ‘the system doesn’t take this seriously’ and that she could provide Es pain killers, but that was about it.

After the ER visits, Es and her Mom found her an OB/GYN doctor with whom they could establish a relationship and have some consistency in care, optimistic that the doctor could find something that would help better manage her pain.

Managing Endometriosis Pain

Because Esmerée hasn’t had a laparoscopy, she doesn’t actually have a definitive diagnosis, but at this point, Esmerée, her doctor, and her Mom are pretty sure that Es is living with endometriosis. Even without a diagnosis, she has severe, life-disruptive pain on a regular basis that must be managed. The human body is so layered and complex it can be seriously tricky business finding the right thing, or combination of solutions that will mitigate pain to a manageable level and still allow a person to function.

Es tells me that over the years she’s tried everything from over-the-counter (OTC) pain medications like Advil, to medicinal marijuana, to the prescription drugs she was given at the ER. She is quite self-aware and her Mom has raised her to trust her experience, which proved to be highly valuable when dealing with some serious negative side effects of various treatments.

It's frightening when an endometriosis or pelvic pain solution might become more debilitating than the original problem.OTC meds not only didn’t begin to touch her pain, they upset her digestive system so those weren’t a solution she used for very long. She says that medical marijuana helped her relax but didn’t really address her physical pain effectively enough, so it wasn’t a solution she could rely on. She was given Vicodin, but found that began to make her feel suicidal, so that was definitely not a viable solution.

Esmerée expresses concerns with the potential results of the combined experience of being given opioids while being an adolescent with out-of-balance hormones. She wonders how many women and girls find themselves not only struggling with pain, but with mental and emotional distress or even suicidal thoughts. It is frightening when a solution might become more debilitating than the original problem.

A complicating factor in Esmerée’s health, besides endometriosis is that Esmerée has Lyme disease. She has found that it exacerbates all symptoms, physical and emotional. This is compounded by the fact that she has yet to have a doctor take her Lyme disease experience  seriously. She’s had over 40 blood tests for Lyme, but somehow doctors continue to express disbelief around the symptoms. She finds it difficult to have doubt thrown her way when she talks about her pain — incurring mental and emotional anxiety.

This pain is so scary. It feels like your body is attacking you. It’s impossible to relax, so anxiety levels go up right along with the physical pain.

Once established with her OB/GYN doc, Es wanted to release reliance on pain meds and began to explore a variety of birth control and has, like many women, found it to be the most effective solution. It took a little time to land on one that helped lessen her pain and decrease anxiety. Once she and her doctor identified the right pill for her, Es had some relief on both the physical and emotional levels because she had a better balance of hormones.

Esmeree developed a yoga and mindfulness practice which helps bring relief for her anxiety around pelvic and endometriosis pain.Esmerée is now trying a birth control implant called Nexplanon, a progesterone-only birth control method, that can be effective for three years. She wanted something she didn’t need to think overly much about because her life right now includes a lot of travel and variability in her schedule —worrying about taking a pill every day at exactly the same time became more problematic than she wanted. With the implant, Esmerée rarely gets her period and when she does, it’s distinctly lighter. The implant hasn’t eliminated bad cramping completely, but it’s considerably better. She can function and live her life as she wants. Esmerée has developed a committed yoga practice and her heightened body awareness, combined with a mindful approach to life, has offered additional relief.

Fertility and the Future

Esmerée is a young woman and because of her endometriosis pain she’s been forced to think about fertility and motherhood in a way that most 19-year-old women would not. She believes that she is infertile … she doesn’t see how she could be fertile with the severity of pain she’s endured. She loves the idea of being a mother someday but feels that adoption may be the better route. The thought of not birthing her own child makes her sad, but after learning recently that there may be a  genetic component to endometriosis in which her daughters could be susceptible to the condition—it’s not a risk she’s willing to take. The pain she’s endured in her life so far isn’t something she would want her child to experience.

Esmeree Skye Yogi in Hawaii and managing endometriosis and pelvic pain.Esmerée’s found a solution that works for her for at the moment. Her choice of birth control allows her to function, work, and live a fairly full life not consumed by pain. Esmerée’s quality of life has, “changed dramatically.” She said it was totally consuming and all she thought about even when not actively experiencing symptoms. She calls the birth control a “quick fix for now” but knows that could change. But now that she’s managing her symptoms, it’s as though the problem doesn’t exist. Esmerée feels a little resentful that our world/culture/medical system doesn’t make space for her to fully understand and know what is going on with her body. 

At 19, Esmerée is working with what she knows and has — supportive family and friends, her music, her yoga, and her travel (currently in Hawaii!), and an insatiable desire to explore and live as she chooses.

Thank you, Esmerée, for talking with me and sharing your story! I’m sorry you have struggled  so much, but am grateful to know you and hear your story. You are helping other young women understand they are not alone and that there is support and understanding available … and life beyond the pain. 

Thank you, Liana, for once again witnessing a women’s endometriosis pain journey.

With love,
Deb