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

Jessamyn’s Endometriosis Story

Dear Liana,

As I explained in my last post, I need to tell each woman’s story individually. They’re too important to sum up … it’s humbling to hear and read what each person has gone through and I want to do their stories justice. Today, I’m writing to tell you Jessamyn’s endometriosis story.

Dr. Jessamyn Kennedy, Veterinarian and endometriosis pain sufferer.
Dr. Jessamyn Kennedy, Veterinarian and Owner/Operator of Peaceful Shores Veterinary Hospice.

Jessamyn Kennedy is 42 years old, a working Veterinarian at Court Street Animal Hospital, and the Owner/Operator of Peaceful Shores Veterinary Hospice. At age 39, she received a tentative endometriosis diagnosis. Without surgery, she isn’t able get a more conclusive diagnosis.

Like many endometriosis sufferers, Jessamyn experienced bad periods right from the start at age 12. Her Mother didn’t have experience with the severe pain that endometriosis brings with each menstrual cycle. She didn’t believe it was as bad as Jessamyn said it was. Jessamyn remembers an instance when she passed out at school. Her boyfriend took her to the nurse and she was sent home, sweating and sick from pelvic and back pain.

“I was a good student, I didn’t want to miss school, but my Mom hadn’t experienced this herself. It wasn’t until I missed enough school and my Aunt intervened, yelling at my Mom that it was really bad for me, that she was convinced it was a real and serious problem. I feel like if my Aunt hadn’t intervened, it would have taken longer [for my Mom to understand.] There needs to be understanding adults around when kids are having these problems.”

Jessamyn’s Roller Coaster of Pain

Jessamyn generally chooses a natural solution over prescription drugs and spent years trying anything and everything to mitigate her pain. She tried following a specific way of eating, drinking, and exercising according to her cycle. She tried yoga for PMS. She tried herbal remedies. She tried Maya abdominal massage with belly wraps … which made her feel worse. Like many endo sufferers, Jessamyn found any pressure on her abdomen unbearable. She couldn’t use tampons, so tried alternatives like flannel rags and the diva cup. She tried birth control pills and IUDs.

If anyone said this thing will help, I tried it. I did all of it and it never made a difference in my endometriosis pain.

To compound her discomfort, in her 20s, she was diagnosed with Irritable Bowel Syndrome (IBS), which exacerbated all of her PMS symptoms. She found it hard at times to distinguish between the two. There is discussion within the endometriosis care community (here and here for examples) suggesting that endometriosis is more often the cause of digestive symptoms versus IBS. And an IBS diagnosis can actually delay a correct diagnosis. Jessamyn continues to have a sensitive digestive system and manages her food quite carefully to keep symptoms at bay.

When Solutions Worsen the Problem

Side Effects of Birth Control Pills

The most commonly prescribed solution for painful periods is birth control pills. Jessamyn has been on and off them most of her life. She started at about age 15 and stayed on until her 20s. It allowed her to not miss school, but as she got into her late 20s she realized birth control pills were messing with her libido and her emotions.

“They (birth control pills) made me a lunatic. I had mad, extreme mood swings resulting in a lot of arguments and emotional meltdowns, often with only the smallest provocation.”

When she was younger, she didn’t understand what was happening. “I didn’t know. Boyfriends or friends would just respond as anyone would when someone’s acting like a lunatic … either fighting or dismissing. I couldn’t blame them because the emotional storm would come out of nowhere.”

It was an exhausting way to exist and not conducive to achieving mutually satisfying and successful relationships. As she’s gotten older and has developed a clearer understanding of what occurs, she’s able to explain her experience to friends and partners. This helps create a much different experience from her younger years when there was simply a lot of pain, anguish, and misunderstanding.

Let’s Try an IUD

At 30 years old, while attending veterinary school, she decided to forgo the hormones hoping to achieve some mental and emotional balance.Working with a male GYN she chose to try a copper IUD hoping it would provide solutions without systemic hormones. She expected it to mitigate pain and other symptoms and provide a better backup birth control method to use with condoms; as a vet student, she didn’t want to risk pregnancy. The doctor tried to insert the IUD and couldn’t manage it with her tipped uterus; he gave up. Jessamyn said that the attempt was excruciating. A female GYN managed to insert the IUD with a bit more ease, but unfortunately, not only was the insertion painful due to the need to stretch the cervix for this procedure, it made her monthly pain extend to two weeks out of every four and the bleeding got worse.

Amazingly, she persevered for six years with the IUD, determined to cope and avoid birth control pills and the subsequent mood swings, but there just wasn’t any relief and things were getting physically worse.

I was experiencing severe pain two weeks out of every four-week cycle. I grew desperate.

Out of that desperation, at the age of 36, when told it would take 60 days before she could get an appointment to remove the IUD, she had her medically trained boyfriend remove it.*

Finding Answers & Return to the Pill

At this point, Jessamyn needed more answers and did her own research as many women do. Using 28 Days Lighter Diet: Your Monthly Plan to Lose Weight, End PMS, and Achieve Physical and Emotional Wellness as a guide, she began to track EVERYTHING about her cycle in order to really see what was happening. She tracked bleeding, pain, energy levels, moods, digestion, sleep patterns, etc. and learned “how much of a brutal beating I was taking” each month. Armed with this knowledge, at the age of 39, she went back to a GYN to ask, “Is this normal? What’s going on?” Not only was she in frequent and intense pain, but she was, in essence, losing her life for two weeks every month. She was willing—and desperate enough—to try birth control pills again.

Unfortunately, birth control pills also meant a return of anxiety and 4-hour long panic attacks. After unsuccessfully trying Xanax and Zoloft to mitigate those side effects (the meds interfered with Jessamyn’s ability to do her job), Jessamyn wasn’t sure what to do. She then had a conversation with a woman about the differences of generic versus brand name birth control pills. This other woman saw a marked difference, and Jessamyn was determined to try so she brought this anecdotal story to her GYN. The request wasn’t well received by her doctor at all, but Jessamyn insisted. She asked the doctor to humor her and tell the insurance company ‘no substitutions.’ Her insistence seems to have paid off as fortunately, the brand name pill seems to be helping—she no longer experiences anxiety, panic attacks, or wild mood swings. Additionally, the pill has drastically reduced her pain levels.Cute puppy and kitten

“I can still get a little emotional. For example, I’m hyper-reactive to adorable things. But if this is the worst side effect, I’m ok with it. I’m not raging. There are no train wrecks. Crying over cute puppies and kittens? I’ll take it.”

Endometriosis Causes Painful Isolation

Aside from the physical challenges, Jessamyn has also found difficulty in areas of her social community—a generally warm, open, and supportive group—because her experience has been so different from most of the women she spends time with. She has many friends who are both participants and/or facilitators of Red Tents, a movement to bring women together to foster community and reconnect with their core womanhood within a safe and supportive forum. While other women called their menstrual cycles “moon cycles” and discussed ways to honor their experiences, Jessamyn felt left out.

“It used to piss me off. Women were waxing poetic and my response was, this is hell and beyond awful. I don’t want to celebrate it."

“I felt really guilty because I’m friends with so many hippie earth mama’s … I was afraid to tell these women I was going on a birth control pill so I wouldn’t bleed. They were all Red Tent mamas who bleed into the earth. I was ashamed to give up the holistic approach. It took me a few months to admit I went on the pill because I thought it was a betrayal.”

The Impact of Endometriosis Pain

Jessamyn’s endometriosis experience impacted every part of her life. She is a runner, but couldn’t run for two weeks of every month. “I felt like I could never get into good physical shape.” It impacted how she was at work, too.

“I remember right before I went back on birth control pills, I got a wave of pain through my abdomen—everything spasmed at once. I got faint, so I bent over the treatment table. I lay my forehead on it and just kept breathing as I broke into a cold sweat. I had no choice but to breathe through it as best I can. I had to continue to do my job that day.”

Jessamyn is still on the brand-name birth control pill because it works for her for now. She’s concerned about what happens when it’s time to go off and let menopause happen.

“How does someone with endometriosis do it? Go back to pain for some time?”

“We don’t understand how much pain influences our lives until it’s gone. Now, the smallest twinge is a big deal. My nervous system is hypervigilant. I wish people would understand just how painful periods can be. People joke, but no one gets it unless they’ve experienced it.”

The other common solution for women with severe endometriosis is a hysterectomy, which brings its own challenges (instant menopause, being one!) And the truth for Jessamyn is that a major surgery would be an incredible hardship for her to manage. She lives on her own with most friends and family too far away to be of assistance. She has pets to care for and she works full-time in a veterinary office and she is getting her new business off the ground. All this means that being out of commission for the generally expected 6-8 weeks needed to recover from this elective procedure just isn’t an option.

Jessamyn shared her story because she sincerely hopes young women who experience these symptoms get answers earlier than she did. She wants other women to receive needed support and understanding to help them through their experiences. She expressed that she’d like to see women and women’s communities like the Red Tent create space and be inclusive of women with the hard and messy stories like hers.

THANK YOU, Jessamyn, for sharing your story with me and with Heard. Healed. Honored. And, thank you, Liana, for bearing witness to her story and helping create the space for it to be told.

With gratitude,
Deb

*Please do NOT allow someone without medical training to remove your IUD.

Telling the Difficult Story

Dear Deb,

Thank you for writing about finding your voice and being heard by healthcare providers. I think of you as someone who is always able to articulate your perspectives so easily. Your letter showed me that even people who can articulate their thoughts easily don’t necessarily have an easy time doing it in situations like this.  I know from working in healthcare that communicating when we feel vulnerable is complicated and I’m sure that has impacted your experiences as well. Being in a healthcare setting at any age, with even the slightest, most benign health condition, makes us feel vulnerable. In addition, in a medical office we feel like we’re not experts about our own bodies and that creates a power dynamic that can go unacknowledged.

Geez!! The Statistics!!

I appreciate and am appalled by the statistics you shared about endometriosis. The incidence of endometriosis and the complexity (and journey) of reaching a diagnosis, in particular, struck me as completely staggering. The idea that 1 in 10 women are diagnosed with endometriosis and that it takes on average 10 years (10 YEARS!!!) from symptom onset to diagnosis, amazes me. These statistics show that whether or not we acknowledge it, the experience of endometriosis shapes many women’s lives. If, generally (statistically, on average), a woman is experiencing symptoms during her ‘average’ menstrual cycle,, then that is a minimum of 10 weeks out of the year that she has, according to the Mayo Clinic , anywhere from mild gastric discomfort to debilitating pain or excessive bleeding.  Over 10 years that means that a woman can be experiencing these symptoms for a cumulative 2 years. That is a ridiculous amount of time being uncomfortable without reliable answers and more importantly, without reliable solutions or safe options for relief. Amazing.

Talking about Pain
When I think about the idea of spending that amount of time uncomfortable, let alone, experiencing uncontrolled pain, I go back to the theme of being heard. I know that I, as your friend, heard you loud and clear when you were experiencing these symptoms, but I wonder about how health care providers heard you.

I would appreciate if you could say more about the discussions you had with health care providers specifically regarding pain. I know that when I’ve had injuries, which is the best comparison I can describe for a chronic pain experience, I’ve found it hard to articulate the experience and I tended to downplay it. Depending on who I am talking with, the way I describe pain can vary. I notice I tend to understate what’s going on when talking with my husband, but when talking with my sister, I feel like I can be more clear, because we (as women, as siblings, as close friends) have a different understanding about our bodies. It see how this dynamic could play out when communicating about pain and discomfort to health care providers. A more sympathetic listener probably gets a more complete and accurate picture of the experience, while a provider who seems to be short on time, unfamiliar, uninterested, or distracted, would likely get less detail and a less clear picture of the pain. Unfortunately, that less clear understanding could lead to a less effective solution, leaving you with less trust about the recommendations, no matter what they would be.

Editing Your Pain Story
You and I both know that it doesn’t make perfect sense to edit the experiences we communicate to health care providers, but that doesn’t stop us from doing it. I’m curious to know, in your experience, what were the situations that made you more and/or less precise when it came to describing your pain or discomfort with health care providers? Do you think there were people who were easier to talk with and why? In situations where it was difficult to get your point across about what you were experiencing what happened and how did that impact the outcomes? Were you still able to get what you needed to address  your pain and discomfort?

Will you dig a little bit deeper into your experience to explain how you communicated with health care providers about the physical experiences you were having to help me understand the different ways that providers heard you and how you found them helpful or you understood that they just weren’t hearing you? I think this will lead us to understanding where along your journey you found healing and how providers honored you and treated you with dignity.

I am also thinking about your experience from the point of view of knowing that you are an articulate, not-shy, self-aware, white woman seeking health care services. Even having all of those factors working in your favor to make it so that you are able to be seen and heard within the health system, I know you have had challenges getting your needs met. As you and I have discussed, after seeing what you’ve gone through, I can’t help but consider the experiences of women who may not be as able to communicate for whatever reasons, or who are in any way underestimated by healthcare providers, and I imagine that their paths are only that much more complicated.

Thanks for your willingness to be open and share your story, I believe you are by no means the only one who has faced these challenges. When we started this project we interviewed other women. I’ll be curious to hear from you if any of the women you spoke with had similar experiences that they shared with you.  I believe your openness, and theirs, can help others understand the impact of endometriosis.

Always,

Liana