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

Happy and Healthy 2018!!

Hello Readers –

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

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

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

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

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

In happiness and health,

Deb and Liana