We know it’s been a LONG time since we posted, and it probably seems as though we’ve abandoned this project, but that is not so. We’ve had to step back for an incredibly good reason — Liana took on the challenge of running for State Representative of District 66 in Rhode Island!
As most campaigns are, the challenge of getting elected was incredibly demanding in time and energy, but we’re excited to say that it was a success! And now that Liana IS District 66’s State Representative, the demands on her time continue to be … well, demanding! She’s fighting the good fight for her community and for the women and families that live in it; and Deb is so proud of her!
We talk frequently and women’s health is still, and always, a favorite topic. We’re eager for when we can both give this project of capturing the stories of women’s health journeys, and how it impacts relationships, community, and finances our full attention. But for right now, Liana must focus on doing the job her community elected her to do. And Deb will continue to help business owners tell their stories and reach their people through her Message Artist business.
So, we’ll be back! Til then, we wish you good health.
When you first asked me to dig deeper and bring the story of pelvic pain due to endometriosis down to individual stories — Jessamyn, Aileen, and Esmerée — even with my own experience, I didn’t quite know what that was going to look – or feel – like. It’s made me realize, more than ever, that women need to share their stories. Women need community and support around their reproductive health because our culture and system are too often not there for them. Women need talking about menstruation and the myriad complications that can exist for a woman’s reproductive system to no longer be taboo because there are so many more stories to tell.
What I want to focus on in this post are the witnesses to pelvic and endometriosis pain. I want to share some of the conversations I’ve had with the mothers, partners, sisters, and caregivers about what it’s like to helplessly witness someone they love be in severe, cyclical and chronic pain.
Sara Sprague Knight is Esmerée’s mother and a force of both support and advocacy. She herself has never had debilitating period pain. But, she’s found herself the mother of two daughters who suffer from severe menstrual pain, assumed to be endometriosis (neither daughter has had surgery to definitively diagnose).
The first time Sara witnessed the severe pain was when Esmerée called Sara at work requesting her to come home. Esmerée is a creative artistic young woman with a flair for drama, so Sara initially thought Esmerée was exaggerating. But, Sara agreed to come home and when she did and saw her condition, it was obvious to her that Esmerée was in true pain.
“I was shocked! I’ve never experienced anything like that. I’ve never had cramps that sent me home from anything that I was doing.”
Sara didn’t know what to do other than to take her to the ER because it was clear she needed help managing the pain. However, at the ER for the first time, Sara felt like they weren’t listening to her. She felt they were being dismissive by treating Esmerée as if she was just being an overly-dramatic teen who couldn’t handle her period cramps. “I felt I needed to say, ‘I’ve been working as a doula for 13 years. I’ve helped women in childbirth and seen a lot of women in pain around their reproductive organs. My daughter is in a LOT of pain.’”
The entire experience was frustrating for both of them. Sara is sure Es had thoughts and feelings like, ‘You’re my mom. What do you mean you don’t have the answer?!’ And as her mother, Sara was frustrated to not be heard and to experience feeling helpless around her daughter’s pain. Sara understood there was little to nothing, in reality, that she could do other than get her medical attention, so she had to make peace with that frustration.
Mike, my own partner and husband, freely admits he thought I was being dramatic and exaggerating when he first witnessed me experiencing a menstrual cycle. I am a dramatic woman, which, in Mike’s words, is one of the (many) reasons he loves me … but it did allow him to initially doubt the severity of the pain.
He told me, “I come from an interesting family full of people who actively try to prove just how well they can ignore their pain. That naturally made it harder for me to really understand the kind of pain you were in, and just how debilitating it was. I slowly learned better.”
And over the years and unable to offer a real solution to my pain made Mike feel helpless:
“I, like so many other men, are goal-oriented and solution-focused. If there’s a problem, there’s a responsibility to fix it, right? In this case, there was nothing I could fix, nothing I could offer to make the pain stop. When you love someone, whatever the relationship, watching that person suffer is excruciating. The fact that I had no experiential knowledge of similar pain made it difficult to understand the variances in what you experienced. The fact there was really nothing I could do to ease your pain added to the helplessness I felt.”
Although we didn’t meet until I was 40, Mike’s been around long enough to have witnessed and supported me through a couple pelvic surgeries, one of which was my complete hysterectomy. When I was ready to contemplate that surgery, Mike accompanied me to my consult and heard from the doctor’s own mouth that my experience was long and difficult and a hysterectomy made sense; I think that moment truly drove it home for him. I know he was concerned about surgery as it’s always a risk, but hearing from the doctor made him fully support the decision — he didn’t want me in pain anymore, either.
A Medical Caregiver
I also talked with Christy Caputo Ciesla, the Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital in Providence, RI, to get her perspective on living with and managing pelvic pain. I learned enough that I wish I’d met her 15+ years ago! I met Christy after my hysterectomy and I almost wept at our first appointment because she gave me hope I could get past my post-op pain, which was a combination of a lot of scar tissue, stuck fascial tissue, and a hip injury (due to my surgery having me in stirrups for over 5 hours.)
When I spoke with Christy for this post, one of the facts she shared both fascinated and floored me. She explained how chronic pain “gets stuck in the nervous system.” It’s called centralized pain and when the brain and body are used to firing in response to pain, we “catastrophize” it and get to a point where a pain that is less severe may feel worse because the entire nervous system is on edge. Christy calls it the “anxiety monster” because it won’t leave you alone and you can’t turn off the thoughts which leave you feeling like the pain will never end.
Christy firmly believes that if someone is going to treat chronic pain—be it a doctor, physical therapist, mental health therapist, etc—then that person needs to educate him/herself in what works and what we know about pain and the brain connection. She feels we need to get better about referring patients out to the right people, especially primary care docs who are often the first stop, which means the medical profession needs to know their community so they know other resources that might be a solution for their patients—and refer out first before making the decision to have a major, invasive surgery. The surgery may be needed, but there are also women who may be helped with pelvic pain from the right pelvic floor physical therapist.
She also knows that too many women do not feel understood or heard when it comes to talking about pelvic pain. This is a problem because there are ongoing studies out there that show that if someone isn’t believed around their pain, or if they feel belittled, it can make the pain level increase.
Christy treats a LOT of different women—70% of her practice is treating women with pelvic pain. She doesn’t know the exact percentage of her patients who have endometriosis. She says endometriosis is so common that she doesn’t think about numbers, she just focuses on their pelvic pain in general that her patients are experiencing although many of her female patients with pelvic pain may be impacted by endometriosis … she’s seen many women post hysterectomy and/or post laparoscopic-discovery surgeries.
Christy wants women to understand how complex pelvic pain can be. Treatments are different for different situations and providers need to look at it as a whole woman issue—physical, mental, and emotional.
Effects of endometriosis can present as a lot of scar tissue in the pelvis which affects physical mobility and function in general. Excessive tissue overgrowth, multiple surgeries, and adhesions can affect pelvic alignment, abdominal muscles, and the diaphragm, resulting in discomfort or pain beyond the pelvic area.
With chronic pelvic pain, Christy advises patients to think about how we guard against pain … think about how one’s posture changes, or the results of muscle spasms, or laying curled up fetal like, etc. … it will all affect pelvic function.
Treatment of pelvic pain can also bring complications: in surgery, women can be kept in positions for too long, creating muscular problems, as well as developing the scar tissue that will inevitably follow any surgery. These things coupled with all the other effects from endometriosis can affect a woman in unexpected ways.
Christy is committed to treating her patients to ideally get them past and out of pain, but at a minimum, never releasing them until they can manage their symptoms. She’s fortunate in her practice to be able to spend quality time with her patients and truly listen to them. She’s found that empathy is a key component. She finds that sharing—from both herself and her patients—help them feel validated in their experience. She will be involved in a research study that is combining physical therapy with mindfulness. Christy wants to explore this because there are studies that suggest that mindfulness based stress reduction (MBSR) can help manage chronic pain; when patients learn how important self-care can be for helping manage their pain. Essentially, loving and nurturing our bodies even when they’re not making us happy, can be of immense help.
Christy reports that once she starts talking to people about how to love their bodies, they can think about their body cooperating with them versus being the enemy; it’s a HUGE part of pain management because it can help change the hypersensitivity. Christy understands that with chronic pain, the instinct is to curl up and not move. “People become afraid of movement because when we injure ourselves, we know we need to rest and heal, but chronic pain is different and not moving is the worst thing you can do because it creates additional problems.”
“One thing I do for my patients is empower them to start doing things again so they learn how to move and manage around pain when it flares up, but also helping them understand that they can get to a place in which pain is lessened or eliminated. I also know one of the biggest things I can do is to simply let them know I’m there to support them—when they’re experiencing pain and when they’re not. This helps people stop feeling like they’re in a downward spiral and that they’ll never get better. They learn to understand that although their body is ‘misbehaving’, it can still work; it may be different, but they can do it and achieve a balance in their lives. I work to support the entire process.”
Treating the Whole Person
I think the bottom line is, when endometriosis moves a woman outside of simple menstrual discomfort into actual pain, we—women, doctors, families—have to have a long-overdue conversation … and thus our blog. 😊 This is a common problem. Sara wrapped it up for me quite well:
“From a mental health perspective, we consider something diagnosable when it affects how you socialize, work, or care for yourself. If someone can’t meet that criteria, there is a diagnosable problem. It’s about impairment, so if you have pain that is a true impairment, we must talk about it, study it, and come up with better solutions. Yes, menstruation shouldn’t stop a woman from being out in the world and many women only experience minor discomfort, maybe a decrease in energy, or experience a change in appetite. But when menstrual symptoms go into a pathological arena, it’s time for a conversation.”
Sara also pointed out that it’s not just about how a doctor would assess a woman’s impairment, but rather about how a patient assess herself because pain is relative. If a woman says, ‘I’m not bleeding that much but the pain is so intense I can’t hardly stand up’ we have to believe them. It’s that simple. If we believe them, then we can start the process of healing the whole person.
As we’ve discussed, our conversation around endometriosis is clearly not complete. There are a LOT more stories to discover and hear. As women, we can share, listen, and support and hopefully start leading these conversations into our medical system and help more caregivers and support people insight as well as a desire to further study and come up with all around better treatment for endometriosis.
I will admit that when I talked to Esmerée (“Es,” age 19), I was sincerely hoping I’d hear something new. She’s young and she has access to the Internet (which wasn’t much of a gleam in anyone’s eye when I was a teen back in the 80s), so I thought she might have more information or at least have found better support, etc.
Sadly, her experience was fairly similar to my own, leaving her feeling lost, with little good information and simply doing what she needs to do to function in the now.
The Beginning of Endometriosis Pain
Esmerée was 11 when she first got her period. She remembers experiencing pain before her menstrual cycle officially began. Starting about three months before her bleeding began, she felt monthly, cyclical pain that in hindsight was related to her periods.
For Esmerée, discomfort and pain showed up physically in different ways. Sometimes it was classic cramps — really bad cramps — but cramps just the same. Other times, cramping became intense pain. She describes spending hours curled up or laying on the floor hot and sweaty as she tried to manage the pain. Es was fortunate in that she was home-schooled, so on bad days, she didn’t actually have to drag herself to school or be penalized for missing class. Es and her mother could work around those times when she was incapable of doing schoolwork.
Until she was about 15, Esmerée thinks her Mom probably didn’t really know that her experience was something more than just bad cramps, which her Mom experienced sometimes, too. She says her Mom was always very open, but she but didn’t have any first-hand experience with which to understand what was occurring.
Esmerée says the turning point for her and her Mom occurred when she was 15. She experienced one of her worst menstrual episodes. Her period lasted eight days, was terribly heavy—practically hemorrhaging—and she was vomiting from the intense pain. She ended up in the ER.
“I was in the ER three times in three months for my period. I was sheet white, puking, and I couldn’t talk. Mom didn’t know what else to do but take me someplace that might be able to help me with the pain.”
After that, her Mom started asking the doctors what could be done. The ER was simply pain management and certainly not an actual solution. Es endured a lot of physical exams, blood work, questions, and ultrasounds, but nothing conclusive was showing up … it was a whole lot of questions with very few answers.
Endometriosis Pain & the Need for Advocacy
When Es first went to the ER, she says her Mom was the only one with a head on her shoulders. She herself was delirious with pain and really unable to communicate effectively with the medical personnel. And once she was given pain killers, even less able to communicate.
“Mom was always great about it. She always took me seriously and that was the biggest help. Having someone next to you taking you seriously is HUGE. She was able to tell the doctors, firmly and seriously, ‘No, she’s not being dramatic and this is a serious physical issue.’ But there’s only so much my Mom can do. She’s not a doctor, she’s my Mom … and, I think the bottom line is, I don’t think people listen to women when it comes to women talking about this part of our bodies.”
Esmerée understands that part of the communication and advocacy problem is that endometriosis is difficult to diagnose. She pointed out that it must be hard for a doctor or nurse to be helpless … they literally can’t solve this problem at this time. She thinks it must be tough for a doctor to recommend surgery to a teen as the only diagnosable option. It’s a hard choice from the surgical event, recovery, and cost perspectives.
Chronic Pain IS Isolating
I found it interesting that Esmerée, too, just like Aileen and Jessamyn, initially kept her pain to herself; she didn’t share it with her friends. I think I had the thought that because Esmerée is of a younger generation, she’d be much more open about it. It turns out, pain is isolating no matter one’s age.
Esmerée acknowledged that she kept it to herself partly because she felt helpless and fell back on blaming herself. She was mired in frustration because she couldn’t have the same social life her friends had. Not only were her periods painfully debilitating, they were irregular, so she didn’t always have notice that she would be in intense pain in a couple hours. She avoided the beach, parties … she was always afraid she’d be someplace and have a problem and be unable to manage it.
She says that her friends really didn’t understand what she was experiencing until they witnessed her pain directly. Esmerée shows a depth of understanding of how people think and react to difficult situations, and endometriosis is difficult.
“It freaks people out to see someone they know in that kind of pain. They don’t know what’s going on, and they don’t know how to figure it out, so they panic. I’ve had people behave worse to me when just talking about it, but when they see what’s actually happening, they’ve been supportive.”
Esmerée mentions she’s had interactions with the medical system and those who work in it that range from dismissive to supportive. On her first ER visit, the nurse assigned to her didn’t appear to be taking Esmerée’s pain seriously, treating her as though she simply didn’t know how to handle some bad cramps. She felt belittled and dismissed. Her second visit was quite different. The nurse was supportive, but also blunt and upfront with her. The nurse explained that she couldn’t give Es any real good answers. She said that, ‘the system doesn’t take this seriously’ and that she could provide Es pain killers, but that was about it.
After the ER visits, Es and her Mom found her an OB/GYN doctor with whom they could establish a relationship and have some consistency in care, optimistic that the doctor could find something that would help better manage her pain.
Managing Endometriosis Pain
Because Esmerée hasn’t had a laparoscopy, she doesn’t actually have a definitive diagnosis, but at this point, Esmerée, her doctor, and her Mom are pretty sure that Es is living with endometriosis. Even without a diagnosis, she has severe, life-disruptive pain on a regular basis that must be managed. The human body is so layered and complex it can be seriously tricky business finding the right thing, or combination of solutions that will mitigate pain to a manageable level and still allow a person to function.
Es tells me that over the years she’s tried everything from over-the-counter (OTC) pain medications like Advil, to medicinal marijuana, to the prescription drugs she was given at the ER. She is quite self-aware and her Mom has raised her to trust her experience, which proved to be highly valuable when dealing with some serious negative side effects of various treatments.
OTC meds not only didn’t begin to touch her pain, they upset her digestive system so those weren’t a solution she used for very long. She says that medical marijuana helped her relax but didn’t really address her physical pain effectively enough, so it wasn’t a solution she could rely on. She was given Vicodin, but found that began to make her feel suicidal, so that was definitely not a viable solution.
Esmerée expresses concerns with the potential results of the combined experience of being given opioids while being an adolescent with out-of-balance hormones. She wonders how many women and girls find themselves not only struggling with pain, but with mental and emotional distress or even suicidal thoughts. It is frightening when a solution might become more debilitating than the original problem.
A complicating factor in Esmerée’s health, besides endometriosis is that Esmerée has Lyme disease. She has found that it exacerbates all symptoms, physical and emotional. This is compounded by the fact that she has yet to have a doctor take her Lyme disease experience seriously. She’s had over 40 blood tests for Lyme, but somehow doctors continue to express disbelief around the symptoms. She finds it difficult to have doubt thrown her way when she talks about her pain — incurring mental and emotional anxiety.
Once established with her OB/GYN doc, Es wanted to release reliance on pain meds and began to explore a variety of birth control and has, like many women, found it to be the most effective solution. It took a little time to land on one that helped lessen her pain and decrease anxiety. Once she and her doctor identified the right pill for her, Es had some relief on both the physical and emotional levels because she had a better balance of hormones.
Esmerée is now trying a birth control implant called Nexplanon, a progesterone-only birth control method, that can be effective for three years. She wanted something she didn’t need to think overly much about because her life right now includes a lot of travel and variability in her schedule —worrying about taking a pill every day at exactly the same time became more problematic than she wanted. With the implant, Esmerée rarely gets her period and when she does, it’s distinctly lighter. The implant hasn’t eliminated bad cramping completely, but it’s considerably better. She can function and live her life as she wants. Esmerée has developed a committed yoga practice and her heightened body awareness, combined with a mindful approach to life, has offered additional relief.
Fertility and the Future
Esmerée is a young woman and because of her endometriosis pain she’s been forced to think about fertility and motherhood in a way that most 19-year-old women would not. She believes that she is infertile … she doesn’t see how she could be fertile with the severity of pain she’s endured. She loves the idea of being a mother someday but feels that adoption may be the better route. The thought of not birthing her own child makes her sad, but after learning recently that there may be a genetic component to endometriosis in which her daughters could be susceptible to the condition—it’s not a risk she’s willing to take. The pain she’s endured in her life so far isn’t something she would want her child to experience.
Esmerée’s found a solution that works for her for at the moment. Her choice of birth control allows her to function, work, and live a fairly full life not consumed by pain. Esmerée’s quality of life has, “changed dramatically.” She said it was totally consuming and all she thought about even when not actively experiencing symptoms. She calls the birth control a “quick fix for now” but knows that could change. But now that she’s managing her symptoms, it’s as though the problem doesn’t exist. Esmerée feels a little resentful that our world/culture/medical system doesn’t make space for her to fully understand and know what is going on with her body.
At 19, Esmerée is working with what she knows and has — supportive family and friends, her music, her yoga, and her travel (currently in Hawaii!), and an insatiable desire to explore and live as she chooses.
Thank you, Esmerée, for talking with me and sharing your story! I’m sorry you have struggled so much, but am grateful to know you and hear your story. You are helping other young women understand they are not alone and that there is support and understanding available … and life beyond the pain.
Thank you, Liana, for once again witnessing a women’s endometriosis pain journey.
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.
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.
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.
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.”
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,
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.
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.”
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.
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,
Genetics Bring Concerns
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.
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.
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.
As I explained in my last post, I need to tell each woman’s story individually. They’re too important to sum up … it’s humbling to hear and read what each person has gone through and I want to do their stories justice. Today, I’m writing to tell you Jessamyn’s endometriosis story.
Like many endometriosis sufferers, Jessamyn experienced bad periods right from the start at age 12. Her Mother didn’t have experience with the severe pain that endometriosis brings with each menstrual cycle. She didn’t believe it was as bad as Jessamyn said it was. Jessamyn remembers an instance when she passed out at school. Her boyfriend took her to the nurse and she was sent home, sweating and sick from pelvic and back pain.
“I was a good student, I didn’t want to miss school, but my Mom hadn’t experienced this herself. It wasn’t until I missed enough school and my Aunt intervened, yelling at my Mom that it was really bad for me, that she was convinced it was a real and serious problem. I feel like if my Aunt hadn’t intervened, it would have taken longer [for my Mom to understand.] There needs to be understanding adults around when kids are having these problems.”
Jessamyn’s Roller Coaster of Pain
Jessamyn generally chooses a natural solution over prescription drugs and spent years trying anything and everything to mitigate her pain. She tried following a specific way of eating, drinking, and exercising according to her cycle. She tried yoga for PMS. She tried herbal remedies. She tried Maya abdominal massage with belly wraps … which made her feel worse. Like many endo sufferers, Jessamyn found any pressure on her abdomen unbearable. She couldn’t use tampons, so tried alternatives like flannel rags and the diva cup. She tried birth control pills and IUDs.
To compound her discomfort, in her 20s, she was diagnosed with Irritable Bowel Syndrome (IBS), which exacerbated all of her PMS symptoms. She found it hard at times to distinguish between the two. There is discussion within the endometriosis care community (here and here for examples) suggesting that endometriosis is more often the cause of digestive symptoms versus IBS. And an IBS diagnosis can actually delay a correct diagnosis. Jessamyn continues to have a sensitive digestive system and manages her food quite carefully to keep symptoms at bay.
When Solutions Worsen the Problem
Side Effects of Birth Control Pills
The most commonly prescribed solution for painful periods is birth control pills. Jessamyn has been on and off them most of her life. She started at about age 15 and stayed on until her 20s. It allowed her to not miss school, but as she got into her late 20s she realized birth control pills were messing with her libido and her emotions.
“They (birth control pills) made me a lunatic. I had mad, extreme mood swings resulting in a lot of arguments and emotional meltdowns, often with only the smallest provocation.”
When she was younger, she didn’t understand what was happening. “I didn’t know. Boyfriends or friends would just respond as anyone would when someone’s acting like a lunatic … either fighting or dismissing. I couldn’t blame them because the emotional storm would come out of nowhere.”
It was an exhausting way to exist and not conducive to achieving mutually satisfying and successful relationships. As she’s gotten older and has developed a clearer understanding of what occurs, she’s able to explain her experience to friends and partners. This helps create a much different experience from her younger years when there was simply a lot of pain, anguish, and misunderstanding.
Let’s Try an IUD
At 30 years old, while attending veterinary school, she decided to forgo the hormones hoping to achieve some mental and emotional balance.Working with a male GYN she chose to try a copper IUD hoping it would provide solutions without systemic hormones. She expected it to mitigate pain and other symptoms and provide a better backup birth control method to use with condoms; as a vet student, she didn’t want to risk pregnancy. The doctor tried to insert the IUD and couldn’t manage it with her tipped uterus; he gave up. Jessamyn said that the attempt was excruciating. A female GYN managed to insert the IUD with a bit more ease, but unfortunately, not only was the insertion painful due to the need to stretch the cervix for this procedure, it made her monthly pain extend to two weeks out of every four and the bleeding got worse.
Amazingly, she persevered for six years with the IUD, determined to cope and avoid birth control pills and the subsequent mood swings, but there just wasn’t any relief and things were getting physically worse.
Out of that desperation, at the age of 36, when told it would take 60 days before she could get an appointment to remove the IUD, she had her medically trained boyfriend remove it.*
Finding Answers & Return to the Pill
At this point, Jessamyn needed more answers and did her own research as many women do. Using 28 Days Lighter Diet: Your Monthly Plan to Lose Weight, End PMS, and Achieve Physical and Emotional Wellness as a guide, she began to track EVERYTHING about her cycle in order to really see what was happening. She tracked bleeding, pain, energy levels, moods, digestion, sleep patterns, etc. and learned “how much of a brutal beating I was taking” each month. Armed with this knowledge, at the age of 39, she went back to a GYN to ask, “Is this normal? What’s going on?” Not only was she in frequent and intense pain, but she was, in essence, losing her life for two weeks every month. She was willing—and desperate enough—to try birth control pills again.
Unfortunately, birth control pills also meant a return of anxiety and 4-hour long panic attacks. After unsuccessfully trying Xanax and Zoloft to mitigate those side effects (the meds interfered with Jessamyn’s ability to do her job), Jessamyn wasn’t sure what to do. She then had a conversation with a woman about the differences of generic versus brand name birth control pills. This other woman saw a marked difference, and Jessamyn was determined to try so she brought this anecdotal story to her GYN. The request wasn’t well received by her doctor at all, but Jessamyn insisted. She asked the doctor to humor her and tell the insurance company ‘no substitutions.’ Her insistence seems to have paid off as fortunately, the brand name pill seems to be helping—she no longer experiences anxiety, panic attacks, or wild mood swings. Additionally, the pill has drastically reduced her pain levels.
“I can still get a little emotional. For example, I’m hyper-reactive to adorable things. But if this is the worst side effect, I’m ok with it. I’m not raging. There are no train wrecks. Crying over cute puppies and kittens? I’ll take it.”
Endometriosis Causes Painful Isolation
Aside from the physical challenges, Jessamyn has also found difficulty in areas of her social community—a generally warm, open, and supportive group—because her experience has been so different from most of the women she spends time with. She has many friends who are both participants and/or facilitators of Red Tents, a movement to bring women together to foster community and reconnect with their core womanhood within a safe and supportive forum. While other women called their menstrual cycles “moon cycles” and discussed ways to honor their experiences, Jessamyn felt left out.
“I felt really guilty because I’m friends with so many hippie earth mama’s … I was afraid to tell these women I was going on a birth control pill so I wouldn’t bleed. They were all Red Tent mamas who bleed into the earth. I was ashamed to give up the holistic approach. It took me a few months to admit I went on the pill because I thought it was a betrayal.”
The Impact of Endometriosis Pain
Jessamyn’s endometriosis experience impacted every part of her life. She is a runner, but couldn’t run for two weeks of every month. “I felt like I could never get into good physical shape.” It impacted how she was at work, too.
“I remember right before I went back on birth control pills, I got a wave of pain through my abdomen—everything spasmed at once. I got faint, so I bent over the treatment table. I lay my forehead on it and just kept breathing as I broke into a cold sweat. I had no choice but to breathe through it as best I can. I had to continue to do my job that day.”
Jessamyn is still on the brand-name birth control pill because it works for her for now. She’s concerned about what happens when it’s time to go off and let menopause happen.
“How does someone with endometriosis do it? Go back to pain for some time?”
“We don’t understand how much pain influences our lives until it’s gone. Now, the smallest twinge is a big deal. My nervous system is hypervigilant. I wish people would understand just how painful periods can be. People joke, but no one gets it unless they’ve experienced it.”
The other common solution for women with severe endometriosis is a hysterectomy, which brings its own challenges (instant menopause, being one!) And the truth for Jessamyn is that a major surgery would be an incredible hardship for her to manage. She lives on her own with most friends and family too far away to be of assistance. She has pets to care for and she works full-time in a veterinary office and she is getting her new business off the ground. All this means that being out of commission for the generally expected 6-8 weeks needed to recover from this elective procedure just isn’t an option.
Jessamyn shared her story because she sincerely hopes young women who experience these symptoms get answers earlier than she did. She wants other women to receive needed support and understanding to help them through their experiences. She expressed that she’d like to see women and women’s communities like the Red Tent create space and be inclusive of women with the hard and messy stories like hers.
THANK YOU, Jessamyn, for sharing your story with me and with Heard. Healed. Honored. And, thank you, Liana, for bearing witness to her story and helping create the space for it to be told.
*Please do NOT allow someone without medical training to remove your IUD.
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
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.
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, 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.
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.
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.
I 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.
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
It’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.
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!
Your point about the nursehelping 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 yourcomments 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 aleaky 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 triedmaya 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
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 aPaige 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.
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.
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.
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…
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. 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.
The 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.
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.
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.
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.
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.
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.
Thank you!, Liana, forthe 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.