Pelvic Pain & Endometriosis at 19

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

Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist and endometriosis pain sufferer.Dear Liana,

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.

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.

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.

By the time she was 13, the pelvic pain was unbearable.

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.

Esmeree SkyeUntil 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.

Esmeree Skye Pain is isolatingEsmerée 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.

Esmeree Skye - The pain was totally consuming.

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.

It's frightening when an endometriosis or pelvic pain solution might become more debilitating than the original problem.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.

This pain is so scary. It feels like your body is attacking you. It’s impossible to relax, so anxiety levels go up right along with the physical pain.

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.

Esmeree developed a yoga and mindfulness practice which helps bring relief for her anxiety around pelvic and endometriosis pain.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.

Esmeree Skye Yogi in Hawaii and managing endometriosis and pelvic pain.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.

With love,
Deb

Aileen’s Endometriosis Story

Dear Liana,

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

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

Early Endometriosis Pain

Aileen, too, had bad periods almost from the start. Her first period was at age 14, and she remembers it being painful enough in high school that her mom, who was a nurse, took her to a doctor pretty early on. She was put on prescription Naprosyn (the brand name for naproxen, an NSAID: nonsteroidal anti-inflammatory drug.) Although she felt her Mom was generally supportive, she approached it pragmatically, as in, ‘this is the problem and this is what I (as a nurse) know about dealing with it.’

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

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

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

Endometriosis and Pregnancy

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

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

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

Thankfully, Aileen gave birth to a healthy son.

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

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

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

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

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

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

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

The Diagnosis

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

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

Endometriosis pain brought fear of cancer

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

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

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

Side-Effects & Ongoing Pain Management

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

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

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

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

Social Isolation & Eliminating Shame

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

Aileen felt as though her endometriosis pain was minimized

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

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

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

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

Women need to talk about their periods and endometriosis pain

Genetics Bring Concerns

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

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

Watching daughter for signs of endometriosis pain.

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

Aileen worries her daughter will experience endometriosis pain

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

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

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

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

With gratitude,
Deb

Jessamyn’s Endometriosis Story

Dear Liana,

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.

Dr. Jessamyn Kennedy, Veterinarian and endometriosis pain sufferer.
Dr. Jessamyn Kennedy, Veterinarian and Owner/Operator of Peaceful Shores Veterinary Hospice.

Jessamyn Kennedy is 42 years old, a working Veterinarian at Court Street Animal Hospital, and the Owner/Operator of Peaceful Shores Veterinary Hospice. At age 39, she received a tentative endometriosis diagnosis. Without surgery, she isn’t able get a more conclusive diagnosis.

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.

If anyone said this thing will help, I tried it. I did all of it and it never made a difference in my endometriosis pain.

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.

I was experiencing severe pain two weeks out of every four-week cycle. I grew desperate.

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.Cute puppy and kitten

“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.

“It used to piss me off. Women were waxing poetic and my response was, this is hell and beyond awful. I don’t want to celebrate it."

“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.

With gratitude,
Deb

*Please do NOT allow someone without medical training to remove your IUD.

Wild Ride of Endometriosis Pain

Dear Liana

You asked in your last post if I’d dig a little deeper into the topic of endometriosis pain: my experience trying to describe it to the various health care individuals, my friends, and family; what I tried in my attempts to manage it; the impact of it; my experience of being heard—or not. It’s complicated and difficult for myriad reasons to talk about it. Because of this, I’ve reached out to other women who suffer with endometriosis and who both are living with it and thriving despite it to help tell the pain story.

But, before I introduce you to these women, I want to share and highlight the commonalities in all our stories …

The Wild Ride of Endometrosis Pain

  • Meanwhile, in my uterus, a nuclear bomb just went off.Extreme pain began, if not immediately upon first menstruation, pretty darn soon after that.
  • All of our mothers provided varying degrees and styles of support, but unless the mother had endometriosis, the initial reaction was doubt and some sense that we were exaggerating because, “women have bad periods; it’s just what women have to live with” (which is really a whole other post on its own!)
  • The only women who are officially diagnosed are those who have gone through surgery.
  • Endometriosis ruled our existence. We all gave up going out for social events. We missed workouts, yoga classes, school, and work because we couldn’t pull ourselves off the floor, the couch, or out of a fetal position.
  • We’ve all tried a LOT of different things (legal, illegal, prescribed, OTC, holistic, etc) in an attempt to manage pain and continue functioning.
  • What may help one woman, may not help at all for another.
  • Recommended solutions quite often bring additional—and sometimes severe—problems.
  • And last, but certainly not least, women need to be heard. Every single woman with whom I talked expressed gratitude for being able to share their story without shame, judgement, or dismissal. Having someone truly hear them and understand what they’ve gone through and continue to face was clearly impactful.

The Faces of Endometriosis

The women with whom I spoke moved me often to tears … and laughter. There was understanding and commiseration. Unless one has experienced endometriosis pain, it’s truly hard to describe it adequately enough to do it justice. And the fact we’ve all born the pain, white knuckled and breathless, while still doing our jobs and functioning in the roles we’ve chosen in our lives … well, in my humble opinion, it puts a spotlight on just how freaking strong women are.

These women have my respect as well as my empathetic sorrow that they’ve had to endure this kind of pain at all. So … lets start with a brief look into these women’s stories, which will unfold over my next several posts.

Jessamyn Kennedy, age 42

Veterinarian and Owner/Operator of Peaceful Shores Veterinary Hospice. Tentatively diagnosed at age 39.

Jessamyn Kennedy, Veterinarian and endometriosis pain sufferer.Like many women, Jessamyn experienced bad periods right from the start, at age 12. Her Mother didn’t have experience with the level of pain that endometriosis brings with each menstrual cycle. She didn’t really believe it was as bad as it was. Jessamyn remembers an instance in high school in which she passed out. Her boyfriend took her to the nurse and she was subsequently sent home, sweating and sick from pelvic and back pain.

“I was a good student, I didn’t want to miss school, but my Mom hadn’t experienced this herself. It wasn’t until I missed enough school and my Aunt intervened, literally yelling at my Mom that it was really bad for me, that she was convinced it was a real and serious problem. I feel like if my Aunt hadn’t intervened, it would have taken longer [for my Mom to understand.] There need to be understanding adults around when kids are having these problems.”

Aileen McDonough, age 42

Writer & Communications Professional, Owner of 3 am writers. Diagnosed in mid-30s.

Aileen McDonough, Writer & Communications Professional and endometriosis pain sufferer.Aileen, too, had bad periods almost from the start. Her first period was at age 14, and she remembers it being painful enough in high school that her mom, who worked as a nurse, took her to the doctor. She was put on prescription Naprosyn (brand name naproxen, an NSAID: nonsteroidal anti-inflammatory drug.) Although she felt her Mom was overall supportive, she approached it as a nurse (as in, this is the problem and this is what I know about dealing with it) and with the view that, “we’re women. Monthly pain is just what we deal with.”

Aileen was glad to be part of this project because she sees how embarrassment and shame isn’t helpful and stresses that it helps when women can talk about their health trials with other women. “It’s who we are as women. Women need to talk it out. We need to reduce the stigma and eliminate shame” around endometriosis pain so we can talk about it and find the support and understanding we need.

Esmerée Skye, age 19

Yogi, Writer, Singer/Songwriter, Artist. No official diagnosis.

Esmerée Skye, age 19, Yogi, Writer, Singer/Songwriter, Artist and endometriosis pain sufferer.I will admit that when I talked to Esmerée, I was sincerely hoping I’d hear something new. She’s young and has access to the Internet (which wasn’t much of a gleam in anyone’s eye when I was a teen back in the 80s), so I thought she might have more information or at least have found better support, etc. NOPE. Sadly, her experience was fairly similar to my own, leaving her feeling lost with little good information and simply doing what she needs to do to function in the now.

Esmerée told me how grateful she was for the chance to talk about it without shame and to have someone truly understand how hard it is.

Deb Goeschel (Me!), age 48

Communications Professional, Owner & Creative Director of Message Artist. Diagnosed in mid 30s.

Deb Goeschel, Communications Professional and endometriosis pain sufferer.And, of course, there’s my story of endometriosis and the pain it causes. It’s similar to the women above, but like all of us, our journeys are still unique in their own way. My period started rough and it just never got better. I made choices around and because of my monthly endometriosis pain. I had boyfriends, partners, husbands who run the gamut on their support. I have friends and family who never quite understood just how bad it was. There’s no blame or shame in that. Sometimes, when in the midst of it, there’s simply no words because it’s so much effort just to keep breathing; there’s nothing left to try and explain.

Christy Caputo Ciesla (PT, DPT, PRPC)Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital in Providence, RI

Christy Ciesla Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam HospitalI spoke with Christy, to get her perspective on living with and managing pelvic pain. I learned enough that I wish I’d met her 15+ years ago!

70% of her practice is working to help women with pelvic pain. A large part of what she sees every day are complex issues. A LOT are endo related, but may not always be the current diagnosis (could be post hysterectomy or menopause, or that her patient hasn’t been officially diagnosed.)

Christy reports that the effects of endometriosis are vast … a lot of scar tissue in the pelvis which effects functioning in general. The tissue repeatedly overgrows, creating adhesions, sometimes requiring multiple surgeries which creates more scar tissue and adhesions which, in turn, effects the pelvic floor, abdomen, and diaphragm muscles’ ability to work properly, which impacts pelvic alignment, which causes more issues. “Think about what happens when you’re guarding against pain … posture changes, muscle spasms occur, more curving/slouching, etc. — all interferes and affects pelvic function.”

Witnessing and Honoring

It was more than a little overwhelming to hear these stories and then try to capture them adequately for a blog post. What I’ve concluded is I can’t “sum it up.” I can’t do it in one post. It’s TOO BIG. (Especially when reality clicks in and I remember that we’re working in a blog format – it’s great content, but no one reads a blog post that’s 4,000 words long!) So, I’m going to follow this post up with each woman’s story. Please bear with me and bear witness. I hope our readers are willing to do the same.

I will say, I am finding an immense amount of compassion and support talking about endometriosis pain. Hearing these women as they tell their personal stories was powerful. To be able to understand and be understood was moving … and, in its own way, healing.

Thank you for reading. Thank you for listening. Thank you for understanding how important it is for women to share their stories.

Love

Deb