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

 

My Endometriosis Story

Dear Liana,

As we were discussing the other day, by the time we’d met as college sophomores, I’d already been through a painful adolescence, although not one represented by social angst or bullying or any of the other more typical issues.  Instead, I was alone among my friends with a period that would keep me out of school or activities due to overly heavy bleeding and what was too often excruciating pain.

Your suggestion of writing down my history, now executed, has proven a powerful one. Even I, who can be my harshest critic, can only find compassion for the woman dealing with this past. So, as requested, here’s my history. Grab your coffee or tea … it’s not a brief story!

Bad From the Start

I was one of the last of my friends to get her period … I literally felt like Margaret, wondering when it was going to happen already! (Wow … if I knew then what I know now, I would have been happy to wait a whole lot longer!!!) When the event finally occurred, I was in 8th grade and sitting in Mrs. Waller’s math class (my most dreaded and miserable class, I might add.) Mrs. Waller was a formidable and seemingly unbending woman and not too empathetic towards those of us who struggled with algebraic concepts.

Are you there God? It's me, Margaret by Judy Blume That day, I remember feeling vaguely sick. Of course, I didn’t recognize the sensations. Then, I felt a gushing, and when I shifted in my seat and looked down, I saw a bloody seat. WHAT?! It was late spring and I was wearing very light-colored khaki pants. I was absolutely horrified and frozen; I couldn’t move for fear of any of my classmates seeing it and none of my close friends were in this class with me to offer support. Given my intimidation of Mrs. Waller, when the bell rang, it never occurred to me to ask her for help. I just beelined for the nurse’s office, looking straight ahead, catching no one’s eye, and fervently praying no one could see the blood on the back of my pants. I was mortified as only a 13-year-old girl can be; I was sure my world was ending.

Thankfully, the nurse was sympathetic and kind, providing me supplies, and much-needed sympathy for my plight. Mom was called and arrived with a long jacket for me to wear on my escape home.

The Virgin On Birth Control

By the time I was a sophomore in high school, I was missing at least a day of school each month because of my period. It was always heavy and the cramping was fierce. At first, my mother thought I was exaggerating (my propensity for drama biting me in the ass here) because she had never had any major issues around her cycle so she simply had no frame of reference.

After some time, Mom could see I was truly in pain, so she made an appointment with a GYN—a male—which initially made me quite uncomfortable. Fortunately, he was kind and managed to make me as comfortable as any young woman could be with her legs in stirrups for the first time. If he said the word endometriosis, it didn’t register. What I do recall is his strongly worded recommendation for birth control pills as a way of lessening my symptoms.  So, years before I had sex, I was on the Pill. On top of that, he recommended Advil (or similar) at prescription quantities (800 mg doses) as needed. In hindsight, I can see he was focused on that present moment. He didn’t discuss repercussions of long-term NSAID use and he likely never considered the fact that I’d take his words to heart and take prescription level doses of Motrin for YEARS.

The First Time I *Heard* the Word Endometriosis

I was about six months out of college, newly married to an Air Force man working for NATO, and living in Meßstetten, Germany when I first heard someone mention “endometriosis”.  A woman, late 20’s to early 30s, and mother of two, told me she had it and was anticipating surgery for it.  By that time, I’d been on birth control pills for at least 6 years with much less pain.  Although I commiserated with her a little, it seemed very disconnected to my experience.

Although my first marriage ended swiftly—I was married at 22, separated right before my 24th birthday, and officially divorced by 25—I didn’t go off the Pill until facing 30. I decided to go off it because I wasn’t clear on what long-term use did to fertility and I was positive I wanted to get pregnant at some point (I still had a “Plan B” … if I hit 35 without a partner, I’d get pregnant and do it myself.) Within 6 months, I started experiencing bad periods again.

Living With It

Once I went off the pill, I just lived with the pain. There was always cramping and varying degrees of heavy bleeding. Inevitably, it seems, I ended back in the space of missing days in which I’d have to call in to work, or leave early because I just couldn’t function. I took gross quantities of Advil (or Pamprin, a popular PMS mitigator.) I also got into the habit of self-medicating with several glasses of red wine using the logic that the uterus is a muscle and alcohol is a muscle relaxant. This went on for YEARS. I shudder to think what I was doing to my liver…

Rare clear day on Franconia Ridge, NH
Me on one of the many NH hikes I did in my 30s, enjoying a rare, clear day on Franconia Ridge in the White Mountains.

In my 30’s, I spent all my free time hiking and practicing yoga, but I simply couldn’t when I was bleeding. I couldn’t make it through a 90-minute yoga class without bleeding through a super-duper tampon.  I found that dealing with my period on the trail was just too difficult, not to mention the fatigue I felt which would make me want to just sit down wherever I was on the trail and go to sleep. On top of that, because endometriosis (which I didn’t know I had at the time) gets everywhere, including one’s bladder, colon, and connective tissues in the deep pelvic floor, my digestion would go wonky each month, too. Between the intense pain, digestive discomfort, and the heavy bleeding there were times when it truly felt as if my life energy was draining out of my body. 

“Hello. Your Pap Results Are In. They’re Abnormal.”

As you know, Liana, having gone with me to most of these doctor appointments in my mid-30s, I got the call no woman wants—my pap smear results showed abnormal cells. This is when I learned about cervical dysplasia (pre-cancerous cells). My reaction was probably like many a woman’s in that moment … ‘I have what?! HPV?! WTF is that?!’ I found out I had pre-cancerous cells growing not only on my cervix, but down along the walls of my vagina, which apparently was not common.

Friendship support and love through hard times.
This was a time in my life fear took over. This was the first moment I faced the reality that I might not have children. You were my rock, Liana, when it felt like the waves of information would knock me down and swamp me. Having you accompany me to my appointments, holding my hand in the exam room while you asked the questions I couldn’t think to formulate, and holding me after the appointment when I was overwhelmed by fear was a level of support and comfort for which I’m still so grateful … I don’t think I could have gotten through it without you.

I don’t know if you remember, but it took 3 procedures and a topical treatment (all with weeks or months in between) to get rid of the dysplasia. I endured  a “cone biopsy”, which is when a cone-shaped piece of the cervix is removed from the location of the abnormal tissue, “cryosurgery” in which they freeze the abnormal cells off, and a loop electrosurgical excision procedure (LEEP) which uses electricity to remove affected tissue. And FINALLY, a topical treatment using a skin cancer treatment cream. For 5 days, I had to first cover my vulva with Vaseline (to prevent any burning of healthy tissue), then using a douche-type applicator, apply the cream vaginally right before bed. I was told to immediately lie down so no cream would drip out and potentially “burn” other skin. Upon waking, I took a bath and washed thoroughly to remove any excess. Not a fun week, but it did the trick.

Appendicitis? NOPE! Ovarian Cysts … AND Finally, Endometriosis!

Sometime in the year I was 38, I took myself out of work one day and to the emergency room. I honestly thought I had appendicitis. I was experiencing such an intense and focused pain in just the right spot for it. However, after several hours and some tests in the ER, I was told that’s not what I had, so an ultrasound was ordered; ovarian cysts were suspected.  Sure enough, the ultrasound revealed a couple of them, one particularly large, so surgery was recommended. Once the doc went in, she was able to definitively diagnose endometriosis. Endometriosis occurs when the endometrium (lining of the uterus) grows outside of the uterus on other areas in your body such as the ovaries, fallopian tubes, outer surface of the uterus, vagina, cervix, vulva, tissue that holds the uterus in place, bowel, bladder, or rectum.

Endometriosis

Severe endometriosisThe doc discovered a LOT of endometriosis in that first surgery. She removed the cysts, cleaned up what endo she could, closed me up, and delivered that diagnosis … which oddly, seems like the first time I had the word “endometriosis” applied to me … after 25+ years of living and managing the symptoms.

Post-op, we discussed options. At that time, even though I was 38, I hadn’t given up my desire to be a mother and was still hoping I’d meet a partner who wanted to be a father. (Plan B didn’t happen. At 35 I was old enough to know how much work being a single mother would be!) Because of this, we discussed Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists drugs, common as treatment for endometriosis, which block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation, creating an artificial menopause. However, after some research, I was reluctant to take this because when researching, there were a fairly significant percentage of women who stayed in menopause and at 38, I was definitely NOT ready for that!  

Birth control pills were the next choice because they had worked before. However, this time I tried two different pills over the course of about 6-8 months—they made me absolutely insane. I didn’t recognize myself … I had crazy mood swings, I was angry and volatile, and just felt all sorts of WRONG. So I stopped them and started trying to treat myself as holistically as possible. I talked to my doc about it and we discussed non-pharmaceutical methods to lessen estrogen, such as avoiding soy-based foods and exploring herbal remedies for endometriosis.  

Fini

Although a strong, intelligent, all-grown-up woman in my 40s, there were times in the last few years that had me feeling like that lost and confused adolescent. As I write this, I’m 48 and the last couple years were, simply put, brutal.

I was feeling ovulation when it happened, which I described as someone stabbing me with a knife, fast and hot. Once I started bleeding, the fatigue was debilitating and the pain was volatile, moving from cramping to sharp, excruciating shooting bursts of pain that would leave me whimpering and breathless with my husband looking on feeling helpless.

The digestive discomfort was growing worse around my period, too. I found that if my bladder or colon were full while I had my period, it just added another layer of pain. At this point, my system wouldn’t tolerate NSAIDs any longer, they made me so sick, so other than alcohol, I had no drugs to help. I used herbal remedies, which *sometimes* could take the edge off, but at the dose I needed, I gained dizziness … I was getting desperate.

I was wrung out in all ways. At 47, the spectre of menopause didn’t seem nearly as fearful as enduring another 5-10-15 years of a painful menstrual cycle based on whenever my body decided to enter menopause. The consistent physical stress was taking its toll in myriad ways – I didn’t sleep as well, I didn’t exercise as well, and I’d isolate myself for days.

Recovering from surgery on Captiva Island
Four and a half weeks after my hysterectomy, I got to finish up my recovery on a family vacation on Captiva Island.

And the reality was that soon after meeting my current, last, and best husband at 41, I went through the emotional and mentally painful realization that having children wasn’t in the cards for me.  Accepting this helped inform my final treatment choice.

At my annual exam, I came to the decision with my doc that a hysterectomy was what I wanted and needed. My symptoms were so bad again, I was looking at another surgery anyway, so I figured why not end it once and for all?

And Now …

Liana, you know there was, and continues to be, grief around the decision because it’s truly final—I’m not giving birth.  However, I have to admit there is a weight removed. (And I truly do love being the “cool Auntie!”) Although I’m still healing from surgery (PT is helping), it’s a revelation not to be held hostage by my own body.

I’ll also admit, and I’m somewhat surprised by, how vulnerable sharing this history makes me feel. You’ve witnessed it and been there with me, but now our choice to embark on this project and start it by sharing our personal stories leaves me in a tender space.

Revisiting this past of mine brings up old emotions and new. But, as vulnerable as I feel, I’m glad to share it. I want other women to know they are NOT alone. I want women who suffer from endometriosis to find support. I want young women who may not know what’s going on that endometriosis may be the problem. I want dialogue around it because I still find it ridiculous that I didn’t have a diagnosis for years and it’s something too many people aren’t comfortable talking about.

So, thank you for suggesting I do this exercise. Telling my story, having it heard and honored, does offer me a sense of healing.

With love and gratitude,

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