What I Know Now About Endometriosis

Dear Liana,

Thank you for your continued support as I tell my endometriosis story. My delayed response to your post is due to being up to our eyeballs in moving boxes and questions that always seem to start with, “Where the heck did I put …?” along with the fact I needed to process the telling of my own story and absorb your response. Your thoughtful questions required I step back and give some serious thought to what I want to express in order to help other women.

Having a Voice & Using It

Endometriosis statisticsIt’s amazing to experience how our voice, or lack thereof, can impact our health stories. As an adolescent my voice was fairly timid or nonexistent. There were certainly “taboo” topics about which I was quite uncomfortable talking, but in reality, I didn’t know what I didn’t know — our teen years occurred well before the internet was available! Looking back, I’m not sure I had enough knowledge, or even language, to ask the right questions. All I knew was my period hurt … I’d never even heard the word “endometriosis.” It occurs to me now that rather than me asking the doctors, the doctors should have been asking a lot more questions of me to get a broader and more comprehensive picture because how could I know, at the age of 16, what I don’t know?

Finding the right ob/gyn doc for me was critical — it changed my experience of my healthcare visits. I finally found the doc I stuck with somewhere in my early to mid-30s. Once I found her, I felt confident I’d be heard. In my 30s, I was much more apt to ask questions and push back, so we could actually dialogue, which wasn’t what happened when I was younger. And my doc was always running late on her appts because she did take time to talk with her patients — I never felt rushed. I do feel that my doc tried very hard to approach any of the options we discussed and attempted (including getting rid of the pre-cancerous cells) with the eye to not destroying my fertility because she knew I desired to become pregnant at some point.

As I got older, she’d always check in to see where my thoughts were on the fertility/pregnancy topic because that informed our approach. And it wasn’t until in my early 40s that the conversation changed. At that point, I made it clear that I felt that window had closed. My doc had always indicated that pregnancy wasn’t impossible, but it was highly likely it wouldn’t be easy for me, and the older I got, the more true that statement. And the fact remained, I had never been interested in a lot of the fertility options available to women today. I never wanted to spend a fortune in money and emotional/physical effort to go through fertility treatments, etc on the chance I could have a child in my mid-40s. It’s a choice many women make, and I congratulate those that do so successfully. I even have a couple dear friends who chose that route, but that path wasn’t one I wanted to take myself and my husband down.

Pre Endometriosis surgery pic
Not the most flattering of photos, but since I’m laying it all out anyway … me pre-surgery, high on something, and giggling because I looked like a purple Stay-Puft marshmallow man due to the “warming machine” blowing warmed air into my hospital johnny!

I think my experience around my hysterectomy (almost a year ago!) leads me, once again, to confirm we need advocates with us in these big moves. My husband came to several of my appointments with me, helping me ask the questions we needed answered — How was it to be done? What were the short and long-term implications? How do we handle sudden surgical menopause? What were the implications of hormone therapy? How long was a typical surgery? How long was recovery? Etc — because we were contemplating a momentous change in my body and health and life experience. But in truth, out of ignorance, there were some things neither of us thought to ask or even consider. In hindsight, my post-surgery challenges make sense, but at the time, I didn’t consider the possibility of a strained hip or adductor muscle due to the surgery itself: my five-hour surgery was longer than most hysterectomy surgeries. As my PT subsequently said, five hours in stirrups is more than my hips could manage. And I didn’t realize it’d take me so long to get an appointment with a specialist in pelvic floor rehabilitation and helping women recover from hysterectomies. It was three and a half months before my first appointment, which left me quite uncomfortable and limited in movement for several months after surgery. I’m pleased I’m making so much progress, but it’s astonishing to realize I’m 11 months past surgery and 7 months in PT and only now beginning to get things truly back on track.

At my first annual ob/gyn appointment post-surgery (about 4 months after), I found it perplexing and somewhat disheartening that when I used the words “hip injury” with my doc, she shut down. I didn’t understand what was happening in the moment, but I was confused. Later, when describing it to my husband, he stated that she probably thought I was going to sue her, which NEVER entered my mind. I simply wanted a conversation that might make it better for another woman after me. I wanted another of her patients to be told, “hey, be prepared to see a PT afterward as you might need it”. Our system makes it so difficult for doctors to be holistic with their patients!

Being Heard

Your point about the nurse helping me when I got my period is a great one. Nurses, without question, have almost always been a great resource for comfort in some uncomfortable moments. (I do remember one nurse holding my hand during one of my first pelvic exams.) But nurses are sometimes held back by their position — there’s always some information that must come only from the doctor’s mouth, and if a nurse isn’t present throughout an exam or for a discussion, she/he can’t really add more to the conversation because they don’t have all the information either. I’d like to see nurses further empowered because I think they make a phenomenal “bridge” between patient and doctor in our over-stressed healthcare system.

I read your comments about listening and being heard and I think that’s partly why I did attempt holistic and alternative care in addition to visiting with my ob/gyn to manage my endometriosis symptoms. There was a BIG difference between working with traditional western docs versus the herbalists or a naturopath. Although my ob/gyn was open to me working with other folks to find some relief — she knew her limitations — her gaze was still quite laser focused on my reproductive system. The naturopath and herbalists looked at my reproductive system and then asked me what else was going on? They wanted to know, how was my digestion, energy levels, emotional and mental well-being, etc? They worked from the premise that these other things could be both a cause and an effect of what was going on with my reproductive system.

My naturopath listened to my entire history (from childhood on) and immediately set about creating a protocol to heal a leaky gut (which caused my food intolerances), build up my immune system, calm my adrenals, and shore up my abused and exhausted liver. Treating these separate, but intertwined parts of the complex body systems DID help, in its own way, to bring some balance to my body. Somewhere in my late 30s, I had a regularly-timed period for first time ever w/o birth control pills. Pain management was a bit trickier … over the years I’ve used with varying degrees of success chiropractic, massage (although I never tried maya massage), Reiki and other energetic modalities, herbal medicines, and topical essential oil balms, all in an attempt to mitigate pain and take back some control over my life/body.

What I Want Other Women to Know

Tips for endometriosis doctor appointments.

I want any woman, especially young or adolescent women, with whom this endometriosis story resonates, to find their voice so they can ask the questions they need answered. I want to give them the opportunity to ask *me* questions so I can offer some insight and information as they navigate their own reproductive health journey. I want women to be empowered to advocate for themselves and to reach out a hand to their Liana when they need support. My entire objective of sharing this journey is so that others know they are NOT alone! So that they know what questions to ask, what expectations to temper, what challenges they may face … and to understand how many different options for treatment are available to them. And to walk away with a thorough understanding that their care and treatment choices must work for them and it very well may look different woman to woman.

I suspect young women today have more info than I did because Google exists, but it’s terribly difficult to know what sources to trust. And with definitive diagnosis so difficult to obtain, it makes it even harder for women to know what to do. And the bottom line is, every woman’s body is different and every woman’s body will respond uniquely to different modalities and treatments. We have to remember that at any given time in a health journey, sometimes it’s our bodies that need help, and sometimes our emotional or mental well being needs attention first — and women have the right to choices in the options.

Today, I’d say to any woman facing endometriosis, to write down their questions and define their places of confusion. Ask for help from a beloved friend or family member … someone who can help advocate to come up with these questions. If you’re a mother, talk to your daughters and hear what they’re saying about their particular menstruation experience so doctor appointments have more chance of being productive. Write down concerns, fears, and goals because those will help inform treatment choices. Go into every appointment with questions! And bring a trusted friend/family member/partner to write things down and help track the questions, or record the appointment so you capture everything, because it’s HARD to remember afterwards.

Cracked and Beautifully Strong … Not Broken

I LOVED that you referenced Kintsugi, that beautiful Japanese pottery tradition of mending broken pieces with gold or silver! I’ve always thought that was a beautiful practice and it’s a phenomenal metaphor for all of us women … in our lives and health journeys, we may get cracked, bruised, and sometimes broken, but we mend stronger and ultimately more beautiful for the knowledge, strength, and wisdom we gain. My current favorite image that represents that practice is a Paige Bradley sculpture called Expansion. It’s my laptop desktop wallpaper and I’ve a purchased print of it I’m eager to hang in my new house. It speaks so beautifully to the concept of Kintsugi.

Paige Bradley's Expansion Sculpture

Thank you for holding space for me in years past and again now as together we begin this health stories telling journey. I can be open and strong because I have support from you and others in my life. I’m deeply grateful for it.

Love,
Deb

 

 

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