Witnessing Pain & Holding Space

Women supporting women. Witnessing Pain and holding space. Pelvic pain and endometriosis needs support.

Witnessing Pain & Holding Space

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.

The Mother

Sara Knight, LMHC counselor and mother to an endometriosis pain sufferer.
Sara Knight, LMHC offers concierge-style counseling to people in their homes, in the community, or through video meet-up. Sara specializes in mindfulness-based practices for a variety of issues including anxiety, depression, peri- and post-partum depression, borderline personality disorder, sobriety and couples counseling. She is also passionate about connecting her clients to the natural world in ways meaningful to each individual.

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.

The Partner

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.

Mike and I playing in the rain at King Richard’s Faire … where we met and where we celebrate “us” with our good friends every year.

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

Christy Ciesla, Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital, treats pelvic pain and endometriosis pain.
Christy Ciesla, Clinical Coordinator of the Women and Men’s Health Rehabilitation at The Miriam Hospital says that 70% of her practice is treating women with pelvic pain. She wants women to understand how complex pelvic pain can be and that treatments are different for different situations. She strongly feels that providers need to look at pelvic pain as a whole woman issue —physical, mental, and emotional.

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:

If women say they're in pain, we must believe them. Pelvic pain is real.“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.

Here’s hoping …

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.