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.
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.
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.
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
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:
“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 …