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

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.

Wild Ride of Endometriosis Pain

Dear Liana

You asked in your last post if I’d dig a little deeper into the topic of endometriosis pain: my experience trying to describe it to the various health care individuals, my friends, and family; what I tried in my attempts to manage it; the impact of it; my experience of being heard—or not. It’s complicated and difficult for myriad reasons to talk about it. Because of this, I’ve reached out to other women who suffer with endometriosis and who both are living with it and thriving despite it to help tell the pain story.

But, before I introduce you to these women, I want to share and highlight the commonalities in all our stories …

The Wild Ride of Endometrosis Pain

  • Meanwhile, in my uterus, a nuclear bomb just went off.Extreme pain began, if not immediately upon first menstruation, pretty darn soon after that.
  • All of our mothers provided varying degrees and styles of support, but unless the mother had endometriosis, the initial reaction was doubt and some sense that we were exaggerating because, “women have bad periods; it’s just what women have to live with” (which is really a whole other post on its own!)
  • The only women who are officially diagnosed are those who have gone through surgery.
  • Endometriosis ruled our existence. We all gave up going out for social events. We missed workouts, yoga classes, school, and work because we couldn’t pull ourselves off the floor, the couch, or out of a fetal position.
  • We’ve all tried a LOT of different things (legal, illegal, prescribed, OTC, holistic, etc) in an attempt to manage pain and continue functioning.
  • What may help one woman, may not help at all for another.
  • Recommended solutions quite often bring additional—and sometimes severe—problems.
  • And last, but certainly not least, women need to be heard. Every single woman with whom I talked expressed gratitude for being able to share their story without shame, judgement, or dismissal. Having someone truly hear them and understand what they’ve gone through and continue to face was clearly impactful.

The Faces of Endometriosis

The women with whom I spoke moved me often to tears … and laughter. There was understanding and commiseration. Unless one has experienced endometriosis pain, it’s truly hard to describe it adequately enough to do it justice. And the fact we’ve all born the pain, white knuckled and breathless, while still doing our jobs and functioning in the roles we’ve chosen in our lives … well, in my humble opinion, it puts a spotlight on just how freaking strong women are.

These women have my respect as well as my empathetic sorrow that they’ve had to endure this kind of pain at all. So … lets start with a brief look into these women’s stories, which will unfold over my next several posts.

Jessamyn Kennedy, age 42

Veterinarian and Owner/Operator of Peaceful Shores Veterinary Hospice. Tentatively diagnosed at age 39.

Jessamyn Kennedy, Veterinarian and endometriosis pain sufferer.Like many women, Jessamyn experienced bad periods right from the start, at age 12. Her Mother didn’t have experience with the level of pain that endometriosis brings with each menstrual cycle. She didn’t really believe it was as bad as it was. Jessamyn remembers an instance in high school in which she passed out. Her boyfriend took her to the nurse and she was subsequently 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, literally 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 need to be understanding adults around when kids are having these problems.”

Aileen McDonough, age 42

Writer & Communications Professional, Owner of 3 am writers. Diagnosed in mid-30s.

Aileen McDonough, Writer & Communications Professional and endometriosis pain sufferer.Aileen, too, had bad periods almost from the start. Her first period was at age 14, and she remembers it being painful enough in high school that her mom, who worked as a nurse, took her to the doctor. She was put on prescription Naprosyn (brand name naproxen, an NSAID: nonsteroidal anti-inflammatory drug.) Although she felt her Mom was overall supportive, she approached it as a nurse (as in, this is the problem and this is what I know about dealing with it) and with the view that, “we’re women. Monthly pain is just what we deal with.”

Aileen was glad to be part of this project because she sees how embarrassment and shame isn’t helpful and stresses that it helps when women can talk about their health trials with other women. “It’s who we are as women. Women need to talk it out. We need to reduce the stigma and eliminate shame” around endometriosis pain so we can talk about it and find the support and understanding we need.

Esmerée Skye, age 19

Yogi, Writer, Singer/Songwriter, Artist. No official diagnosis.

Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist and endometriosis pain sufferer.I will admit that when I talked to Esmerée, I was sincerely hoping I’d hear something new. She’s young and 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.

Esmerée told me how grateful she was for the chance to talk about it without shame and to have someone truly understand how hard it is.

Deb Goeschel (Me!), age 48

Communications Professional, Owner & Creative Director of Message Artist. Diagnosed in mid 30s.

Deb Goeschel, Communications Professional and endometriosis pain sufferer.And, of course, there’s my story of endometriosis and the pain it causes. It’s similar to the women above, but like all of us, our journeys are still unique in their own way. My period started rough and it just never got better. I made choices around and because of my monthly endometriosis pain. I had boyfriends, partners, husbands who run the gamut on their support. I have friends and family who never quite understood just how bad it was. There’s no blame or shame in that. Sometimes, when in the midst of it, there’s simply no words because it’s so much effort just to keep breathing; there’s nothing left to try and explain.

Christy Caputo Ciesla (PT, DPT, PRPC)Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital in Providence, RI

Christy Ciesla Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam HospitalI spoke with Christy, to get her perspective on living with and managing pelvic pain. I learned enough that I wish I’d met her 15+ years ago!

70% of her practice is working to help women with pelvic pain. A large part of what she sees every day are complex issues. A LOT are endo related, but may not always be the current diagnosis (could be post hysterectomy or menopause, or that her patient hasn’t been officially diagnosed.)

Christy reports that the effects of endometriosis are vast … a lot of scar tissue in the pelvis which effects functioning in general. The tissue repeatedly overgrows, creating adhesions, sometimes requiring multiple surgeries which creates more scar tissue and adhesions which, in turn, effects the pelvic floor, abdomen, and diaphragm muscles’ ability to work properly, which impacts pelvic alignment, which causes more issues. “Think about what happens when you’re guarding against pain … posture changes, muscle spasms occur, more curving/slouching, etc. — all interferes and affects pelvic function.”

Witnessing and Honoring

It was more than a little overwhelming to hear these stories and then try to capture them adequately for a blog post. What I’ve concluded is I can’t “sum it up.” I can’t do it in one post. It’s TOO BIG. (Especially when reality clicks in and I remember that we’re working in a blog format – it’s great content, but no one reads a blog post that’s 4,000 words long!) So, I’m going to follow this post up with each woman’s story. Please bear with me and bear witness. I hope our readers are willing to do the same.

I will say, I am finding an immense amount of compassion and support talking about endometriosis pain. Hearing these women as they tell their personal stories was powerful. To be able to understand and be understood was moving … and, in its own way, healing.

Thank you for reading. Thank you for listening. Thank you for understanding how important it is for women to share their stories.

Love

Deb

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

What a Journey!!

Dear Deb,

Goodness gracious!!! I mean, I do remember many inflection points of the story and I knew most of what you went through, but when you put it out there in the order of events – from period to hysterectomy – whoa!!!! What a flippin’ journey, lady!!!

There was lots of pain, many lost days of school and work, a ridiculous amount of effort to figure out a livable (and tasty) diet and a bit of a wounded heart. My heart goes out to the girl, the young woman who I met in college and the friend I have had in you, for having needed to be so brave and patient. It sounds like it’s been exhausting and an exercise in endurance. What amazes me is that you have thrived despite this path and its uncomfortable and difficult days.

I’ll have to admit that working in the healthcare field clouded my reading of your story.  I kept thinking, “Who were these doctors you went to?! Were they always listening for the right information?! What is their experience with pelvic pain, complicated periods and endometriosis? Would they think they’d made the right choices if they could hear your story now?”

Your Voice
The reality is that when you were an adolescent, I bet that like any of us in our evolving adolescent bodies and brains, the LAST thing you wanted to talk about was taboo subjects like your period and your ‘development’. It was quite likely that you were just trying to figure out the right words to express what was happening, not thinking about developing a voice for advocating for help and defining for yourself what help should look like. You didn’t know what parts of the experience were ‘normal’ and what parts weren’t. That’s a tough starting point.

I know from experience that the people in our healthcare interactions who are often best at hearing patients are the nurses and nursing staff, as opposed to the doctors (I know this is a generalization – there are pretty fabulous docs out there – but nurses as a general rule rock at listening). The first nurse you mentioned in your letter was your school nurse in 8th grade. What you couldn’t have known was that you probably weren’t her first adolescent girl in crisis and she seemed to hear you without you needing to say much, whereas I expect that plenty of the other providers on your journey were not quite as adept at listening.

The way you navigated the system to get the care you needed probably changed over the years and your voice developed from that of an adolescent to a woman advocating for care, pain management, surgical solutions and information.

Listening
It struck me that your account of the experience included references to different types of listening. First and foremost it was you listening to your body. But beyond that you move from your mother listening to you, to you listening to the experience of others and finally, to health care providers listening to you.

The difference between hearing and listening stands out in what you shared. One example is in your discussions with your doctor after the operation to remove the ovarian cysts. That was the juncture when the endometriosis was confirmed. I remember that was around when my kids were small and you were still planning to have a family. I wonder if your GYN doctor really was hearing your desire to start a family and if she considered alternative therapies at that time.

Over the course of the journey, your health goals were to live without pain, maintain your plans for children and to manage digestive issues that were exacerbated by your diagnosis. You seemed to cobble together answers about how to live those goals. I’m convinced that worked more because you began to find the balance between listening to healthcare practitioners and listening to your body and your own wisdom.

In hindsight, it’s easy to question the extent to which providers, especially during the early years, adequately heard you and developed long-term solutions to help you get comfortable enough for activities of daily living, in accordance with your life’s aspirations for a family, or if they focused primarily on solving the immediate symptoms.

Heard So You Can Be Healed
Ultimately, I am impressed by your faith in the health care system as you continued to turn to doctors and surgeons for answers. I know that there were times between the instances you recounted in your letter when your faith in the health system was waning. You tried a few alternative healing methods over these years and I know that you had some success with pain management working with a chiropractor.

I understand that your hysterectomy decision was difficult to come to as it was a decisive and symbolic step. I know it was a carefully considered decision and you were able to make it with the support and care of your sweet husband and family. I appreciate that your doctor was consultative and could talk with you and hear you through the process, so that you were at peace about the decision.

That said, the surgery was clearly no picnic and the road to recovery has been, of course, longer than desired. There were symptoms that you were never told about until you had them, though they would have been great to understand ahead of time.

We’re old enough to have our self-advocacy impacted by the arrival of the internet. We started getting the chance to browse the web during our early ’20s and over the years it has exploded with information, but not always as informative as we’d hope and not always consistent with what doctors would advise. I still wonder, if a young woman today had the symptoms you experienced, would she end up with a different endometriosis narrative. If so, some of that will be due to the access to information that was not available to you.

So Others Will Be Heard
When you reflect, Deb, on your conversations with various health care professionals through your journey, what are some highlights of when you thought providers were really hearing your story and using that information and understanding of you to help come up with solutions? How would it have made sense for health care providers to assist with the related gastrointestinal and food sensitivity issues? Did you find that the chiropractors or herbalists that you worked with approached your symptoms and the interactions differently than the physicians and physical therapists that you saw?

Thinking of a young woman today who is living with endometriosis or having the first signs of problems, how can she benefit from hearing your story? Are there ways you hope that her health care providers hear her so that they can honor her near-term and long-term goals and help heal her to their best ability? Are there ways to talk about abdominal pain that help get the point across?

 

As I have been writing back to you I have had in mind the Japanese pottery tradition of Kintsugi, the mending of broken pieces with gold or silver.

I hope that the vulnerable places that have emerged from your story can be mended with the valuable power of connections, sharing and community.  I know that for me, sharing my stories and challenges, health or otherwise, with you – have done exactly that and I have consistently emerged stronger.

Thank you again for being willing to be go back through the years and remember the challenges and bring them back into the light. You impress me with your openness, endurance and strength, my friend.

Always,

Liana

 

Friendship Forms Heard. Healed. Honored.

Dear Liana,

Liana and Deb at UCONN Graduation, ready to take on the world.
Liana and Deb at UCONN graduation (a photo salvaged from one of Deb’s neglected photo albums.)

I love that the friendship that began in UCONN’s McMahon Hall—while we learned to balance the responsibility of being RAs with being curious, exploring, idealistic, and sometimes silly college students—carried us forward through almost 30(?!) years of love, laughter, tears, and growth.

I can’t help but laugh when I think about our “future plans” conversations in college and realize that, in some ways, my planned life became yours and your planned life became mine. You gave birth to two amazingly lovely individuals, creating a family with your husband and partner and still managed an impressive and often demanding career. Although I had fervent plans for children and fully expected I’d be a mother long before you, those plans were completely derailed by my disastrous first marriage and what became a lifetime of reproductive health issues. Instead, I dove into several entrepreneurial and creative ventures before settling into a more corporate track, only to find my way back to being an entrepreneur!

I am fully conscious of how our personal journeys intertwine with our health stories. We’ve both had life take us in unexpected directions providing life and health experiences that run from sublime to anguish. While I know that where I am now is exactly where I want to be, I am also aware that it is quite far from what I expected or planned in those long-ago college conversations. Regardless, your presence has been a steady constant. You’ve held me, both literally and figuratively, through some of the best and worst times in my life. Embarking on this project with you seems like the most natural and fitting way to honor our friendship, goals, and life views.

Liana and Deb at baby shower for Liana's first child.
Celebrating the impending birth of Liana’s first child.

Witnessing your pregnancies, the birth of your children, and the raising of them has been for me both a source of utter joy and poignant pangs because that experience—one I fiercely wanted for many years—was ultimately denied me. I remember sitting next to you as you nursed Jamie, so tired but lit and smiling with new Mother love. You put your hand on my arm and said, “I can’t wait for you to experience this!” Even now, post-hysterectomy, my memory of that statement pulls on my deep heart strings and can usher in the tears. But, you’ve been there for me through it all, advocating for me when I wouldn’t or couldn’t, holding my hand and asking the important questions in doctor’s appointments, shaking me up when I needed it, and always, offering support.

Looking back at the health stories of our lives thus far, I’m grateful we had each other. Whether we were seeking care from a traditional western medicine source, a naturopath, or herbalist, one thing rings true—support was and is crucial. It’s vital to our whole selves to have someone by our side to help in all the myriad ways, large and small, that health issues, large and small, require.

People start to heal the moment they feel heard. Heard. Healed. Honored. 2 Friends invite women to share their health stories and journeys.Hearing each other’s stories and validating the experience provided a safe framework to manage whatever we faced. The compassion, sympathy, and support honored the experience. And, of course, true healing only occurs when the whole person—body, mind, heart—are addressed. I think we’ve always strived to make sure that we both saw each other as a whole person, understanding that each step in the road had multiple and comprehensive layers that all needed attention. It makes perfect sense to me that we now turn our attention to helping others receive the same. As we embark on creating a platform and forum to hear and share our health stories, and the health stories of other women, it strikes me that we’ve been practicing this for our entire friendship. Our almost 30 years of organic conversation has naturally lead us to create Heard. Healed. Honored.

It is my fervent hope that as we talk with women from all walks of life, they feel our genuine desire to hear their stories, and offer them validation and compassion. I want them to feel honored and respected for their courage and endurance. I hope they understand that while their health stories may impact their life, they do not have to be defined by them. I want women to connect with what they read and hear on this forum, and to find the support they need so true healing can occur.

Grateful for our friendship which lead us to create Heard Healed Honored.Thank you!, Liana, for the years of friendship and for taking our conversations to this point where we get to work together on something that is gratifying, important, and in alignment with our passions and concerns. I’m honored and grateful to be starting this next chapter in our story.

May the women who share their stories on Heard. Healed. Honored. know it’s a labor of love that will truly hear them, honor them, and hopefully bring them some measure of healing.

With love,
Deb

The Beginning of the Story

Dear Deb –

I had no clue when we met at McMahon Hall at UCONN that we’d still be friends nearly 30 years later. We’ve seen each other through richer and poorer, through good times and bad, and in sickness and in health.

Probably the reason I describe our friendship with words that are reminiscent of vows is that we’ve shared so much over the years. We’ve survived plenty of adventures. You even humored me and let me talk you into joining the rugby team when we needed more players.  We’ve hiked together, cooked together, helped each other move, been a part of each other’s family events (including weddings and funerals), laughed for hours on end, and supported each other’s creative and professional endeavors.

The thread of our health stories has woven through our times together. Along with our shared interest in herbals and alternative healing, you’ve been with me and held my hand through health problems and I’ve done the same for you. We’ve worked with allopathic and alternative health practitioners and seen each other recover and move on.

When I think back to sitting together in Gampel Pavilion on graduation day, I think of two healthy women ready to face what life was about to dish out. I don’t think we realized that we’d be each other’s health care advocates, but somehow over the years our conversations about our health have been a constant and have shaped this friendship. Looking back on it, it’s clear that when I’ve need to make health choices, manage news about my health, or navigate the health system, it has been better to have a friend there to help me make sense of it.

We’ve both experienced myriad health challenges and know what it’s like to feel isolated and alone working through appointments, treatments and side effects. Our lives have been shaped by some of these health scenarios – for both of us, having children or not being one of the most impactful – and we know from experience that our health has shaped our work opportunities, our relationships and our families. Your food allergies have, unfortunately, reduced how frequently we’ve gone out to eat over the years and certainly my having kids has changed my ability to spend time with you (thanks goodness for social media, though).

What I’ve found is that when I’ve talked with you about symptoms, pain, fear or health risks, I’ve become more resilient in my ability to deal with them. Having gone through various health care visits with you, I’ve learned how much it matters when someone truly listens. You and I have often lamented when we’re not being listened to by doctors or nurses and we’ve speculated about how there was a better or worse outcome and how that impacts whether or not we feel like we’ve been understood and treated with dignity.

Last fall when you were navigating doctors’ visits while dealing with the complications of endometriosis, it was a privilege to hold your hand and ask the questions of the doctor checking you out after your surgery. It felt like I was able to make sure you were heard during that encounter and I could be sure that you got what you needed and didn’t feel alone. It’s the importance of moments like that and the wisdom that we, as friends, can share with others that really inspires me to work with you on this project.

We started this effort on a hunch that we weren’t the only women with a close friend who has accompanied her on a health journey, and that our health stories were worth sharing. While talking with women and interviewing them about their health stories during these past few months, three themes emerged; that women need to be heard when they talk about their health issues; that they need to be honored by being understood and treated with dignity; and that they need to be healed or receive solutions or curative care for the health problems and symptoms they are experiencing. These themes are our project’s foundation, though as we know from experience, and heard from the dozen women we have spoken with so far; being heard, healed and honored isn’t always what happens on our health journeys. Explicit or not, these ARE the expectations we all have when facing a health issue.

It’s the power of women’s’ health storytelling that we’re hoping to capture and share as we create this blog and podcast. I hope our work can help others know that they’re not alone, that overcoming health challenges is an accomplishment, that while health does shape our lives, we have the power, together, to shape our health.

Thank you, Deb, for these years of friendship, and for starting this storytelling journey with me. Thank you, also, for having the courage over the next few weeks, to share your story about your decades-long challenges with endometriosis, to kick off our first series of posts. Through sharing the story, I hope that other women with similar experiences can find comfort, wisdom and support.

May the women who share their stories with us know that we hear and honor them and their stories. May they see that through the telling of their stories, they may find their way to healing.

Always,
Liana