Aileen’s Endometriosis Story

Dear Liana,

Aileen McDonough, Writer & Communications Professional and endometriosis pain sufferer.Today, I’m introducing you to another woman who has spent her life suffering from, living with, and thriving despite endometriosis.

Aileen McDonough is a 42 years old writer and communications professional who owns and runs 3 am Writers. She’s also a wife and a mother of two children who was definitively diagnosed with endometriosis in her mid-30s.

Early Endometriosis Pain

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 was a nurse, took her to a doctor pretty early on. She was put on prescription Naprosyn (the brand name for naproxen, an NSAID: nonsteroidal anti-inflammatory drug.) Although she felt her Mom was generally supportive, she approached it pragmatically, as in, ‘this is the problem and this is what I (as a nurse) know about dealing with it.’

Her Mom also had the perspective that, “we’re women, monthly pain is just what we deal with,” leaving Aileen resigned to the pain because she trusted her Mom and figured that was it; there weren’t any other answers. As a teen, it never occurred to her that her Mom, the nurse, might not know all the answers.

She has distinct memories of throwing up from the pain and then also being sick after starting Naprosyn because she wasn’t told to take it with food. Because the drug wasn’t doing enough and she was missing school, Aileen went on birth control for the first time in her late teens, well before her first sexual experience. It was the best option available to help mitigate her painful periods and keep her in school.Birth control pills are favored solution for severe menstrual pain and endometriosis.

The pills did help, although she needed to try a multitude of them before finding one with somewhat manageable side effects. She continued this way for years up until she got married. Aileen stopped using birth control pills so she and her husband could start a family.

Endometriosis and Pregnancy

Aileen received a diagnosis of endometriosis when she was older, after a procedure called a laparoscopy. When Aileen looks back at her pre-laparoscopy health history, things begin to make more sense. While Aileen was pregnant the first time, she had a scary experience. She started to experience such severe abdominal pain that she ended up in the hospital—at the time the doctors thought Aileen had kidney stones. Now, years later, after the laparoscopy, her acupuncturist theorized the pain was caused by endometrial adhesions, her OB/GYN agrees.

 “The pain was intense enough they put me on morphine while pregnant—they couldn’t do an ultrasound to confirm because of the fetus. I was in the hospital for five days and I was terrified for my baby … I was so worried he’d be born prematurely.”

Aileen’s pain abated and she was sent home. Although it came back briefly, it subsequently and mysteriously disappeared. Doctors surmise that the pain she experienced was due to lesions and adhesions breaking down or adhesions on the kidneys “unsticking” due to her pregnancy.

Thankfully, Aileen gave birth to a healthy son.

Aileen and her husband wanted a third child, and her doctor recommended it. Pregnancy is one of the solutions recommended for dealing with endometriosis because it can, but does not always, help the body rid itself of the unwanted endometrial tissue. Aileen thought there wouldn’t be any issues; she’d had two relatively uneventful pregnancies, kidney-stone scare aside. Although her daughter required a c-section, there’s no way to know if endometriosis played any part in that scenario. Endometriosis likely played a part in the fact that while attempting to get pregnant again, she miscarried twice.

Ultrasound was ordered early due to Aileen's history of endometriosis.Due to her endometriosis diagnosis, an ultrasound was ordered earlier than normal. Somewhere around week 8, Aileen discovered that the fetus was without a heartbeat. The doctors scheduled a DNC to avoid any life-threatening infections rather than wait to see if Aileen’s body would naturally release the pregnancy.

“It was such a shock. I didn’t expect it. I was still experiencing morning sickness!”The second attempt, what would be her fourth pregnancy, was a similar experience, but she miscarried further along, right at the start of the second trimester, making the loss even harder for Aileen and her family. Reaching the end of the first trimester and thinking the pregnancy was safe, she and her husband had told her two other children about the baby. They brought the kids with them to the ultrasound ready to share and celebrate the experience as a family. Instead, they discovered that the fetus was without a heartbeat. When the doctor came in to read the results (because the technician is not permitted to give a patient this news), it hit hard.

“We had to tell the kids. They were waiting to see an ultrasound photo of their baby brother or sister and instead, we’re spirited out the back door. They get you out as fast as they can … and you want to get out because everyone around you is pregnant and all you want to do is break down and cry.”

Aileen loves her doctor, but she feels that there’s a definite need for more sensitivity. During one of the miscarriages, Aileen had to see an on-call male doctor who clearly hadn’t read her chart. She was put in a curtained “room” next to someone who was having an ultrasound for a healthy and successful pregnancy. The experience was emotionally excruciating.

Overall, Aileen’s experience does offer hope for women with endometriosis navigating pregnancies. “I had two healthy pregnancies and I got pregnant the first two times easily. I had NO real trouble carrying my first two children.”

Endometriosis doesn't mean you can't get pregnant have birth a healthy baby.

The Diagnosis

In her 30s, and after her two successful pregnancies, Aileen was prompted by her acupuncturist to talk with her OB/GYN doctor about endometriosis. Her acupuncturist hadn’t talked with Aileen before because she assumed Aileen knew that was what she was dealing with was endometriosis pain. The truth was that Aileen didn’t know; all she knew was that something was wrong. At this point, Aileen was missing work, losing 3-4 days each month. As a self-employed woman, the interruptions had significant financial impact. So, Aileen made an appointment to see about getting some definitive answers.

Her doctor and Aileen decided things were bad enough that surgery, called laparoscopy, was warranted. The surgery would be to definitively diagnose and remove any endometriosis that was found. Even though the results were pretty stark, she felt relieved because before surgery she was thinking,

Endometriosis pain brought fear of cancer

Instead, she was told, “You are full of endometriosis. Your insides are stuck and so full of adhesions, it’s as though someone poured crazy glue in there. It’s even on your kidneys.” This actually was helpful information because Aileen had also been diagnosed with Irritable Bowel Syndrome (IBS), which turned out to be endometriosis wreaking havoc with her bowels. Read more about IBS and endometriosis.)

Aileen remembers being horrified at the extent of her endometriosis. “I remember thinking, ‘how can something this invasive, this intrusive, be going on in my body without me really realizing it?”

The diagnosis gave her a sense of validation as well as relief. She’d been saying all along something was wrong, that it was more than just typical period pain, but she wasn’t really heard until this time. She was grateful it wasn’t cancer and although she received needed validation, the diagnosis didn’t offer any easy solutions to ending her endometriosis pain.

Side-Effects & Ongoing Pain Management

Over the years, Aileen has been on a large number of different birth control pills, sometimes feeling desperate to find the right one. They’ve helped mitigate her endometriosis pain, but too often have come with unmanageable side effects. At one point, she was not only experiencing endometriosis pain, but also getting intense and severe headaches as a side effect of the birth control pills.
I told my doctor, if I could take arsenic, I would. Endometriosis pain sufferer.

Aileen currently still takes birth control pills and she still gets headaches, but she is managing them with her acupuncturist’s treatments and herbal remedies . Aileen isn’t ready a permanent solution like a partial or complete hysterectomy. She wanted to try acupuncture first because it’s less invasive, and for now, although she isn’t pain free, it IS manageable. She regularly sees an acupuncturist and, in her words, “will forever.”

“It’s the one time I can sit and talk and feel listened to, wholly. My acupuncturist looks at the whole picture of my endometriosis, digestion, and miscarriages as well as the rest of my life … disagreements with my husband, stressful work, etc. It all gets considered.”

Endometriosis pain as painful as heart attack.Finding someone who hears Aileen—and all women—when it comes to pain shouldn’t be so hard, but it’s the result of a culture that is only just beginning to discuss women’s health—and pain—in deeper and more comprehensive ways. Just recently, in a February 2018 Quartz interview (then picked up by Marie Claire magazine, John Guillebaud, professor of reproductive health at University College London, said that patients have described the cramping pain as “almost as bad as having a heart attack.” For a doctor to repeat this … well, it’s a long-overdue validation for women everywhere who experience severe menstrual pain.

Social Isolation & Eliminating Shame

Aileen, who went to an all-girls Catholic school, was alone in her adolescent experience. She remembers times in which she felt “blown off” by friends when she had to decline an invitation, or back out of a plans. Aileen would call and say she couldn’t make it and her friends would always express surprise and give her the ‘No, you have to come out!’ response. Although no one actually said, ‘You’re being overly dramatic,’ that’s how her teen-self interpreted the interactions, and it didn’t feel good.

Aileen felt as though her endometriosis pain was minimized

It was isolating because none of her peers were experiencing the same level of intensity with their periods. She does remember a male friend from that time whose girlfriend had endometriosis. That was the first time she heard the word but didn’t connect it to her own experience. She said she was thinking more about that girl and whether she’d be able to have children one day versus connecting it to her own monthly agony.

As an adult, Aileen’s surrounded by friends who are in her words, “pretty cool” about it all. She feels she has more supportive relationships now and is met with understanding and support when she cannot join her friends for events due to her symptoms. Aileen thinks that she has had it better than most women struggling with endometriosis. Between her current support, the attending of an all-girls school, and having women in her family who were able to advocate for her, she has had advantages. Despite those odds, she still experienced shame over the years as a result of her pain and endometriosis. Even now, a little shame is still there, much to her chagrin—and she wants to change that for herself and others.

“For my daughter, I have to create a feeling of NO SHAME around my period and my endometriosis. I want to be part of making it better for her. If we’re not talking about it, if we’re hiding behind shame, it’s not going to get better.”

Aileen knows it helps to talk about our experiences with other women—especially those close to us. She understands that open dialogue and being held in our vulnerability allows women to feel heard and provides much-needed support. The act of sharing our experiences can reduce the shame and stigma surrounding women’s periods. She says,

Women need to talk about their periods and endometriosis pain

Genetics Bring Concerns

Red heads are more sensitive to pain. Image from Illustrator Elizabeth Graeber's book A Field Guide to Redheads
Image from Illustrator Elizabeth Graeber’s book “A Field Guide to Redheads.”

Aileen’s use of birth control pills since after her children were born, means that while she’s been a parent, her children haven’t seen her outwardly experiencing debilitating endometriosis pain, which is a good thing. However, Aileen is concerned for her daughter, because research has recently shown a genetic component to endometriosis.

Watching daughter for signs of endometriosis pain.

Aileen is determined to be there for her daughter, to help her through whatever her menstrual experience will be. Although she hopes her daughter won’t have the same painful experience, she believes it’s a real possibility. When I asked her how that made her feel, her response was clear and heartfelt.

Aileen worries her daughter will experience endometriosis pain

She’s determined to be “hypervigilant” to ensure her daughter gets what she needs for pain. It’s telling that the problem hasn’t yet presented itself, but she’s already gearing for battle.

Aileen knows that if she sees signs that her daughter is dealing with endometriosis pain, she’ll push for an earlier diagnosis. She knows she’ll have to fight on her behalf because there just aren’t great solutions available yet, and women’s pain is still too often dismissed or diminished. The fact of the matter is, she doesn’t want her daughter isolated and waiting 10-15-20 years to know what’s going on in her body. Even so, Aileen’s leery because she knows that the only way to achieve a diagnosis is an invasive procedure. Putting her daughter, whether as a young girl or woman, through surgery just isn’t something she wants to do.

Aileen does takes some small comfort from the fact that if her daughter does have endometriosis, she has a parent who can be fully empathetic and who can provide compassionate support—she’ll know exactly what her daughter is experiencing. Of course, she still hopes and prays her daughter will have an easier time.

THANK YOU, Aileen, for sharing your story with me and with Heard. Healed. Honored. And, as always, thank you, Liana, for bearing witness and holding space for the stories to be told.

With gratitude,
Deb

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

Happy and Healthy 2018!!

Hello Readers –

Thank you so much for tuning in to Heard. Healed. Honored in 2018 for more insight into women’s health experiences. We hope that this year is off to a great start for you!!

This project started during 2017 as a labor of love in an effort to share the power of supportive friendship and it’s impact on health since we’ve found it so beneficial in our lives. We plan to continue the women’s health storytelling and to grow in 2018 with a more regular publishing schedule for the blog posts, along with a podcast where you can benefit from hearing women’s voices discussing being heard, healed and honored and the stories of women’s health experiences

We’ll be piloting an online community and journaling project in the first half of 2018 as we have seen the benefit of sharing stories and the healing that can come from being in community and having that support. More to come on what that looks like.

We will be picking up Deb’s story over the next few days. The thread will begin to include the experiences and voices of other women Deb has interviewed to provide more clarity around the power of the endometriosis experience to shape and impact women’s lives.

2018 is a year of growth for Heard. Healed. Honored., and we’re glad you’re along for the stories and the community!!!

In happiness and health,

Deb and Liana

 

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 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

 

 

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