Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist, Endometriosis Pain Sufferer. No official diagnosis.
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.