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