Simone's Story: The Hidden Illness That Stole Her Organs Episode Release Date: February 26, 2025 Podcast: The Medical Detectives Hosts: Dr. Erin Nance and Anna O’Brien

Introduction: A Ray of Sunshine Amidst Medical Struggles

The episode begins with Host 1 expressing how deeply moved they are by Simone’s story, highlighting her unique blend of positivity and authenticity. “This episode spoke to me a lot because our guest Simone, literally reminded me how important it is to just find the positivity of the situation. I feel like you're all gonna feel her energy immediately. She was like a ray of sunshine” (00:10).

Early Life: An Active Youth Marred by Chronic Pain

Simone recounts her vibrant and active childhood, where she thrived as an athlete, finding joy in various sports and activities. However, her life was overshadowed by severe menstrual pain that began unusually early. “I started my period when I was in the third grade, so I was around nine years old, earlier than most. And they were always extremely painful” (02:22).

Misdiagnosis and Religious Influence

Growing up in a Southern Baptist environment, Simone's painful periods were dismissed and attributed to religious curses. She shares, “When I would go to gynecologists and tell them of these painful periods, it was often downplayed. Sometimes there was religion kind of brought into it jokingly, which was like, well, this is just the curse of Eve that you have to deal with” (02:59). This led her to internalize the pain, thinking she was being weak.

A Life on the Move: Ignoring Alarming Symptoms

Living full-time in a van, Simone’s situation took a dire turn in November 2022 when she experienced abnormal bleeding outside her regular period. The presence of “black tar” like blood was alarming, but circumstances delayed her seeking immediate medical attention. “I was living out of a van full time... I decided to just put a pin in it and say, okay, we're just gonna note this” (03:25). Her condition worsened in Mexico, prompting her to finally consult an OB GYN upon returning to the United States.

First Surgery: A Frustrating Misstep

On June 10, 2023, Simone underwent diagnostic laparoscopy to investigate endometriosis, a condition she suspected based on her symptoms. However, the surgery yielded disappointing results. “I woke up being told, yeah, we found some things. We burned the Bartholin cyst off... but she said, you don't have endo” (08:58). The discovery of scarring without a clear diagnosis left her feeling dismissed and frustrated.

Ongoing Pain and Ovarian Cysts

Despite the surgery, Simone continued to suffer from painful, hemorrhagic ovarian cysts, particularly on her left ovary, leading to frequent ruptures. These episodes caused severe abdominal pain and other distressing symptoms. “I'm getting monthly ovarian cyst on my left ovary as well... every month. It's about 5 centimeters and will rupture” (10:16).

Second Surgery: Unveiling the Hidden Truth

Determined to find answers, Simone underwent a second laparoscopy where Dr. Muldoon unexpectedly diagnosed her with stage four endometriosis. “I woke up being told, she's like, you have stage four endo deep infiltrating on your bladder” (13:12). Feeling betrayed by her initial OB GYN's oversight, Simone sought out specialists trained specifically in endometriosis, leading her to Dr. Muldoon.

Discovery of Nutcracker Syndrome: A Vascular Culprit

Dr. Muldoon’s expertise extended beyond gynecology, introducing Simone to the possibility of a vascular condition known as Nutcracker Syndrome—a compression of the left renal vein. This discovery was pivotal in understanding the root cause of Simone’s chronic symptoms. “Specifically may thurner syndrome, which is a compression of the left iliac vein... and Nutcracker Syndrome, which is a compression of the left renal vein” (23:02).

Diagnostic Challenges and Emotional Toll

Diagnosing Nutcracker Syndrome was fraught with uncertainty and emotional strain. Simone describes her appointment with Dr. Spencer, the interventional radiologist, where she was informed of severe Nutcracker Syndrome, leading to an overwhelming sense of dread. “I just got into the grieving phase... like, why are you talking to me about Nutcracker? That sucks for these people” (26:02).

Surgical Intervention: The Kidney Auto-Transplant

Facing the reality of her condition, Simone opted for a kidney auto-transplant to alleviate the vascular compression. This complex surgery involved relocating her left kidney to prevent the left renal vein from being pinched. “I chose the auto transplant route... I had to do the traditional kidney auto transplant at University of Wisconsin Health” (33:25). The procedure was successful, and two months post-operation, Simone experienced significant improvement in her health and quality of life.

Post-Surgery Reflections: Renewed Life and Advocacy

Two months after her kidney auto-transplant, Simone feels revitalized and grateful for the surgery’s impact. She shares a profound realization of her bodily functions: “I intimately am aware of what life feels like and what it feels like to be corroding you to death” (38:42). This newfound clarity has fueled her passion for advocacy, aiming to empower others with similar struggles. “My story can empower people to know what surgeons to seek out, what helps give them voice and to advocate for self” (40:07).

Mental Health and Emotional Resilience

Simone emphasizes the mental toll of chronic illness, discussing the grief and anger that accompany such a journey. She reflects on her resilience and the importance of maintaining hope: “The grief that's involved, we don't talk about that grief that's there. The anger that comes with it” (35:00). Her experience underscores the critical intersection of physical health and mental well-being.

Conclusion: A Journey of Hope and Awareness

Simone’s story is a testament to persistence, self-advocacy, and the vital role of specialized medical professionals. Her journey from chronic pain and misdiagnosis to effective treatment and advocacy highlights the complexities of navigating the medical system. As Host 2 aptly puts it, “It's really about finding that person who's going to go the extra mile to say, okay, I'm going to find the person who's going to be your end doctor” (43:43).

Simone concludes with a call for awareness, emphasizing that Nutcracker Syndrome is likely underdiagnosed and urging listeners to seek comprehensive evaluations when facing unexplained medical symptoms. “I don't believe it's rare. I believe it's just under diagnosed... I think that that's my main reason for doing this, is just awareness” (44:19).

Notable Quotes

• Host 1 on Simone’s Positivity:
  “This episode spoke to me a lot because our guest Simone, literally reminded me how important it is to just find the positivity of the situation. I feel like you're all gonna feel her energy immediately. She was like a ray of sunshine.”
  (00:10)

• Simone on Living with Chronic Pain:
  “And I was still gaslighting myself until two years ago, when one alarming day in November 2022... I decided to just put a pin in it and say, okay, we're just gonna note this.”
  (03:25)

• Simone on Misdiagnosis:
  “I woke up being told, yeah, we found some things. We burned the Bartholin cyst off... but she said, you don't have endo.”
  (08:58)

• Simone on Discovering Nutcracker Syndrome:
  “Nutcracker Syndrome, which is a compression of the left renal vein... So, what was happening is because this compression, the blood has to go somewhere.”
  (23:28)

• Simone on Mental Health:
  “The grief that's involved, we don't talk about that grief that's there. The anger that comes with it... Why me?”
  (35:00)

• Host 2 on Medical Advocacy:
  “It's really about finding that person who's going to go the extra mile to say, okay, I'm going to find the person who's going to be your end doctor.”
  (43:43)

Takeaways

Simone’s journey underscores the importance of:

• Self-Advocacy: Persistently seeking answers beyond initial misdiagnoses.
• Specialized Expertise: The critical role of specialists in uncovering complex medical conditions.
• Holistic Understanding: Considering the interplay between different bodily systems when diagnosing.
• Mental Health Awareness: Acknowledging and addressing the emotional impact of chronic illness.
• Raising Awareness: Sharing personal stories to illuminate underdiagnosed conditions like Nutcracker Syndrome.

Simone’s resilience and proactive approach serve as an inspiring guide for individuals navigating similar medical uncertainties, emphasizing that hope and perseverance can lead to meaningful solutions.

Timestamp References

• [00:10] Host 1 introduces Simone’s positive energy.
• [02:22] Simone discusses early onset and painful periods.
• [02:59] Simone explains misdiagnosis influenced by religious beliefs.
• [03:25] Simone’s decision to postpone addressing abnormal bleeding.
• [08:58] First surgery results and frustration.
• [10:16] Ongoing issues with ovarian cysts.
• [13:12] Second surgery reveals severe endometriosis.
• [23:02] Introduction to Nutcracker Syndrome.
• [26:02] Emotional impact of vascular diagnosis.
• [33:25] Decision to undergo kidney auto-transplant.
• [35:00] Mental health struggles related to chronic illness.
• [38:42] Post-surgery reflections and newfound clarity.
• [43:43] Importance of medical advocacy.
• [44:19] Simone’s call for awareness about Nutcracker Syndrome.

This summary is intended for informational and educational purposes, capturing the essence of Simone’s compelling story as featured on The Medical Detectives podcast.