Podcast Host:
Lisa Hendrickson-Jack is a certified fertility awareness educator and holistic reproductive health practitioner with over 20 years of experience teaching fertility awareness and menstrual cycle literacy. She is the author (and co-author) of two widely referenced resources in the field of fertility awareness and menstrual health, The Fifth Vital Sign and Real Food for Fertility, and the host of the long-running Fertility Friday Podcast. Lisa’s main focus is her Fertility Awareness Mastery Mentorship (FAMM) Certification — an evidence-based fertility awareness certification program for women’s health professionals.

Today’s Guest: Jenneh Rishe, RN
Jenneh Rishe is a registered nurse, author of Part of You, Not All of You, and founder of The Endometriosis Coalition. Through her own experience navigating multiple chronic illnesses and surviving open-heart surgery, she offers a powerful voice for patient advocacy, education, and empowerment in the chronic illness and endometriosis communities.
Episode Summary: Living with Diaphragmatic Endometriosis
In this powerful episode, Lisa speaks with Jenneh Rishe, RN, about her long and often isolating journey to an endometriosis diagnosis. Jenneh shares how her symptoms — including chest pain, shortness of breath, and upper abdominal discomfort — were repeatedly dismissed by doctors, delaying effective treatment. She opens up about the emotional and physical toll of misdiagnosis, the limitations of hormonal management, and the eventual surgical intervention that led to real answers. Her story underscores the importance of early diagnosis, specialist care, and self-advocacy when navigating complex chronic illness.
Listener Takeaways for Understanding Endometriosis Beyond Pelvic Pain
- Endometriosis can affect organs beyond the pelvis, including the diaphragm and bowels
- Symptoms like chest pain, shoulder pain, and shortness of breath may be cyclical and hormonally driven
- Misdiagnosis and dismissal by providers are common, especially with atypical symptom presentation
- Hormonal suppression may mask symptoms without stopping disease progression
- Excision surgery by a skilled endometriosis specialist can be life-changing
Full Transcript: Episode 496
Lisa:
As a follow-up to last week’s episode with Dr. Sinervo, all about endometriosis surgical intervention for diagnosis and treatment, I wanted to share the episode that actually sparked this interview. Jenneh came on the podcast to share her personal story of endometriosis, and her symptoms were quite atypical—not what you’d tend to expect. She had a very difficult time getting an accurate diagnosis and treatment, and she went to many doctors before ending up in Dr. Sinervo’s office, which is unfortunately common given how long it takes, on average, for women to receive a diagnosis. Without further ado, let’s jump into today’s episode with Jenneh.
Jenneh:
Thank you so much for having me.
Lisa:
Thank you for being here. I’m glad we were able to work it out. I’m really looking forward to hearing your experience and what prompted you to write your book. Let’s start there—can you tell us a little about your history and what led you to write your book?
Jenneh:
Sure. People are usually surprised to hear that my periods were always really normal—short, light, not painful. I went on the pill at 18 for birth control. My period basically disappeared while on it. When I was 26, I got off the pill and switched to an IUD, and that’s when everything changed. One day I developed intense pain in the upper right side of my stomach, which kept recurring in a cyclical pattern tied to my period. Eventually, I found out it was endometriosis affecting my diaphragm.
Lisa:
That’s such an unusual symptom presentation. What were your next steps?
Jenneh:
I went to my gynecologist, but my symptoms—chest pain, shortness of breath, pain in my scapula—were dismissed. I lived with it until the pain worsened and other symptoms like constipation and pain with sex appeared. Another gynecologist asked if I’d heard of endometriosis—this was the first time I’d heard the term. She suggested birth control and pain management. I was already on an IUD, so we added birth control pills. I went through several with no improvement. Eventually, it was my primary care provider—not a gynecologist—who recommended diagnostic surgery.
Lisa:
It’s frustrating that your primary care provider was the first to recommend actually confirming what was going on. Can you walk us through your birth control history?
Jenneh:
I started with the Ortho Evra patch, then switched to the pill (Yaz). I didn’t have issues with it and stayed on it for years. At 26, I chose the Skyla IUD. It was marketed as lower dose and better for women who haven’t had kids—but the insertion was excruciating. I was rolling on the floor in pain afterward. No one prepared me for it, and I wasn’t offered anything for the pain.
Lisa:
I’ve heard that from many women. It’s so common that it should be standard to offer pain medication. Do you think the IUD played a role in triggering your symptoms?
Jenneh:
I believe the combined pill suppressed my symptoms. When I switched to the IUD, which is localized and doesn’t suppress ovulation systemically, it allowed the disease to progress. That’s when my symptoms intensified. Despite already having an IUD, I was put on pills again—so I was flooded with hormones.
Lisa:
That combination is concerning, especially with so little informed consent. What happened after your primary care provider recommended surgery?
Jenneh:
I had a diagnostic surgery with a surgeon who wasn’t an endometriosis specialist. He found disease on my diaphragm, but nowhere else. The next recommendation was Lupron. As a nurse, I knew what it was—originally for prostate cancer—and that it came with serious risks like bone loss. My doctor didn’t explain any of that. I tried it for three months. It made me feel worse—angry, psychotic, and in constant pain.
Lisa:
That’s horrifying. What did you do next?
Jenneh:
I was told by a specialist that because Lupron didn’t work, I probably didn’t have endo—despite a positive biopsy. That’s when I realized I had to start researching. I found a Facebook group, Nancy’s Nook, where I learned about true endometriosis specialists. I consulted with a surgeon at the Center for Endometriosis Care in Atlanta. He suspected diaphragm, bowel, and pelvic floor involvement and confirmed everything with a second, far more extensive excision surgery.
Lisa:
What did he find?
Jenneh:
Endometriosis everywhere—bowel, bladder, uterosacral ligaments, pelvic sidewalls. My previous surgeon just hadn’t recognized it. That was the turning point. Since the excision surgery in 2016, I haven’t had any endo pain. Recovery included dietary changes, pelvic floor therapy—it was full-body healing. Early diagnosis and the right surgeon make all the difference.
Lisa:
Tell us about your book and why you wrote it.
Jenneh:
It’s called *Part of You, Not All of You*. I wrote it for people living with chronic illness, especially those navigating identity loss and emotional fallout. I journaled through the entire journey. The book offers guided prompts, affirmations, and shared wisdom for anyone struggling with their new normal. I wanted something that was honest and supportive—something I wish I’d had.
Lisa:
That’s an incredible resource. Where can listeners connect with you?
Jenneh:
You can find me on Instagram @lifeabove_illness and at my nonprofit @endocoalition. My book is available wherever books are sold, and my website is jennehrishe.com.
Lisa:
Thank you for sharing your story, Jenneh. It’s incredibly important. Stories like yours remind us how essential it is to self-advocate and push for answers. We deserve better care, and hearing stories like this helps others find the courage to demand it.
Peer-Reviewed Research & Resources Mentioned
- A Bird‑Eye View of Diaphragmatic Endometriosis: Current Practices and Future Perspectives
- Diaphragmatic Endometriosis and Thoracic Endometriosis Syndrome: Review on Diagnosis and Treatment
- Part of You, Not All of You | Jenneh Rishe
- The Fifth Vital Sign (free chapter!)
- Real Food for Fertility (free chapter!)
- Fertility Awareness Mastery Mentorship (FAMM)
- How to Interpret Virtually Any Chart — For Practitioners! (complimentary eBook)
- Jenneh Rishe Official Website





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