Wednesday, February 28, 2024

REDEFINING TERMINOLOGY IN ENDOMETRIOSIS

Written by Dr. Tamar Zelovich exclusively for the Women's Health Collaborative
Edited by: Dr. Roberta Kline


Endometriosis (endo') is a chronic, multi-systemic, inflammatory, and estrogen-dependent gynecological disease affecting 10% of women worldwide. Its onset typically occurs between the ages of 20 and 40, with an estimated 170 million women affected. This condition is characterized by the presence of cells, similar to those lining the inner uterus (endometrium), growing outside the uterus, mainly in the pelvic area. These endometrial-like cells respond to hormonal changes, particularly estrogen, leading to symptoms mirroring the hormonal cycle. Bleeding from the endometrial tissue outside the uterus accumulates in situ and causes inflammation, scar tissue, and adhesions that attach pelvic tissues and organs. 


Diagnosing endometriosis is challenging, with an average delay of approximately 12 years. A definitive diagnosis requires laparoscopic surgery and a biopsy of endometrial tissues. Endo’, being a multisystem disease, manifests in diverse symptoms such as severe pain during menstruation and/or ovulation, chronic pelvic pain, lower back pain, pain during intercourse, dyspareunia, various digestive and urination issues, infertility, etc. Each woman experiences a unique set of symptoms that appear at different points in the hormonal cycle. Despite its high incidence, misdiagnosis and inadequate treatment are prevalent, leaving many women to carry the burden of the disease for years. 

The current primary classification and terminology system for endometriosis categorizes it into four stages (I-IV) based on the quantity of lesions and the depth of infiltration: minimal (Stage I), mild (Stage II), moderate (Stage III), and severe (Stage IV). Stage I is characterized as superficial or minimal endo', Stage II as mild with deeper implants, Stage III involves deeper implants and small cysts on the ovaries, while Stage IV is considered severe, featuring large cysts on the ovaries, deeper lesions, and numerous dense adhesions. These classifications solely focus on infertility, suggesting that Stage IV primarily affects infertility. However, they provide no insight into the pain levels experienced by patients and exhibit a poor correlation with symptom intensity, neglecting the broader impact on the body, the exacerbation of other medical conditions, the degree of inflammation, and the resulting disability. 

It is crucial to acknowledge that even Stage I or superficial endo' has a significant impact on infertility, leading to low Anti-Mullerian Hormone (AMH) levels and diminished egg quality. The terms "minimal" for Stage I and "severe" for Stage IV may inadvertently convey misinformation, implying that Stage I is a less severe case of the disease, which is far from reality. Moreover, it inadvertently creates the impression of a less burdensome condition that does not significantly affect the patient's life. Patients expressing severe pain despite having Stage I or superficial endo' may encounter dismissive attitudes that are contrary to the current understanding. It's noteworthy that there are cases where Stage IV only results in infertility issues without pain, while Stage I can lead to the highest level of disability due to endometriosis. This underscores the complexity and individual variability in the manifestation and impact of endometriosis across different stages. It is common to hear patients with endo’ Stage I say, “I suffer from severe pain even though I only have endo Stage I” or “I’m in so much pain even though I only have superficial endo”, or “I experience intense pain from endometriosis, even though it remains unseen in imaging studies”.

Moreover, it's essential to consider the diversity of endometriosis types when delving into imaging studies and surgical treatments. It is well known that deep endo’ has higher odds of being visible in imaging and a greater likelihood of being detected in surgeries. In recent years, the community believed that superficial endo’, or more specifically, non-pigmented endo’, was rare because it was challenging to identify in imaging and surgeries. Today, we know that it is more common than previously thought. The terminology of superficial endo’ is not only dismissive of patients' pain but also a barrier to research funding, as researchers tend to focus on exploring deep endo, believing it to be a more extensive or severe case of the disease that has a greater impact on pain and infertility. Current knowledge suggests otherwise.

It is now clear that the existing classification system fails to correlate with the intensity of pain experienced and provides a great disservice to women, researchers, and clinicians. To rectify this, our top priority should be to redefine the terminology in endometriosis. In my view, the new terminology should encompass the following considerations:


(1) Extent of Disease as a multisystem disease: The terminology should describe the multisystem nature of endometriosis. I propose categorizing the impact into three phenotypes: 

(i) Pain directly related to endometriosis, such as dysmenorrhea, dyspareunia, chronic pelvic pain, dysuria, gastrointestinal symptoms etc. 

(ii) symptoms, pain, or co-morbidities indirectly resulting from endometriosis, such as conditions flaring up due to endometriosis (e.g., autoimmune diseases, fibromyalgia, etc)  or affecting organs beyond the pelvic region (e.g., reflux disease ,foot drop, etc), and 

(iii) symptoms related to hormonal changes, such as migraines, depression, acne, etc. 


(2) Symptom Intensity and Pain Level: The terminology should reflect the intensity of symptoms and pain. 

(3) Disease Sites: Clearly describing the sites of the disease, including peritoneal, ovarian, bowel, ureter, bladder, etc.  

(4) Effect on Infertility: Describing the impact on infertility, considering effects on the ovary itself, AMH levels, and the quality of eggs.  

(5) Surgical Difficulty: Reflecting the surgical difficulty encountered relative to the disease location, whether it's deep endo (challenging to operate) or superficial endo with various characteristics (challenging to identify). 

(6) Level of Inflammation: Attempting to estimate the level of inflammation in the body because of endometriosis and its effects on the entire body.  

(7) Level of Disability: Estimating the level of disability the patient is experiencing due to the multisystem nature of the disease. 


EPILOGUE

I believe it's time to collectively acknowledge the existence of different endometriosis types that demand specific attention in terms of terminology. Understanding that we may need different imaging techniques and surgical approaches to detect and treat them is crucial. Reconsidering, and more importantly, redefining the classification/terminology we use, steering away from the generic endo I-IV or deep/superficial endo, could contribute to a more accurate and nuanced discourse. Embracing a more detailed and tailored classification system would not only better reflect the diverse nature of the condition but also pave the way for more precise diagnosis and effective treatment strategies. This shift in terminology could enhance communication among healthcare professionals, researchers, and patients, fostering a deeper understanding of the complex manifestations of endometriosis, a multisystem disease.


TAMAR ZELOVICH holds a Ph.D. in theoretical chemistry from Tel-Aviv University and the Weizmann Institute, with expertise in quantum chemistry. Following a postdoc at NYU in theoretical chemistry and the publication of nineteen papers in international peer-reviewed journals, she transitioned to computational health, focusing on endometriosis. Diagnosed with the condition herself, Tamar developed a methodology that aids in management of endometriosis symptoms. Today she is collaborating with KI, a non-profit research organization to study symptoms patterns in endometriosis, and she strives to transform her findings into a digital platform for physicians, aiming to revolutionize early diagnosis/treatment and improve the lives of women globally.


ULTRASOUND DIAGNOSTICS OF ENDOMETRIOMA

ENDOMETRIOSIS REVIEW 2023: FROM ESSENTIALS TO ADVANCEMENTS  By: Robert L. Bard, MD


According to the World Health Organization, Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally.  It is a chronic disorder that can result in life-disrupting pain during menstrual periods, sexual activity and urination.  Currently, there remains no known cure for endometriosis, whereby treatment is usually aimed at managing its known symptoms.  One objective of the medical community is to conduct early diagnosis and research continues to pursue effective treatments.

Endometriosis starts in the endometrium with abnormal cellular proliferation.  Through the use of 3D Ultrasound, this disorder can be measured through the monitoring of the widening or the increased tissue in the endometrium.  Another form of quantitative measure is by the study of blood flow in the endometrium. Its ability to spread can be recognized by the number of vessels in the active tissue.  The big problem with staging endometriosis (or endometriomas) are the cysts that follow it.  Because of its capacity to spread in most areas of the body, a strategic protocol for clinical management is to conduct IMAGE GUIDED treatments, whereby use of real-time scanning of or during therapeutic process helps navigate the focus the treatment area.  Imaging solutions include CT (which has radiation), MRI, or the 3D Doppler ultrasound. 

CASE REVIEWS: We recently had a case where the endometriosis had metastasized under the arm. We've seen it metastasize in post-op scars. We can see the endometrial tissue block the ureters- hence, blocking the kidneys and destroying the kidney function.  Moreover, the scars can cause bowel obstruction.

While it's not categorized as malignant, it certainly can be deadly (as well as a seriously painful and debilitating disease). Women (especially those in advanced age groups) have expressed being completely incapacitated for three out of four days during their menstrual cycle.  A vast majority of them also claimed experiencing mental health issues because of the pain and discomfort. 

The following slides are from Dr. Robert Bard's lecture presented in 2016 for the obstetrics and gynecology department at Mount Sinai Medical Center in New York City (ref: prior lecture from Harvard Medical School/the American Institute of Ultrasound in Medicine).


Use of the modern image guided treatment technologies offer non-invasive blood flow technology, which quantifies the aggression, either the aggressiveness of an inflammatory process like endometriosis or the invasive and metastatic potential of cancers such as endometrial cancer & cervical cancer.

FIG 1: Upon observation, this it is not a primary bladder cancer. This is an inflammatory mass because the vessels are smooth (cancer vessels are wrinkly)- and there is a visible difference between the two.  This is a three dimensional pelvic floor doppler study of the pelvis. If we start with scan A, we see the uterus on the bottom half and the bladder on the top, which is black, and within the black fluid is a mass. By looking below that, we see the (scan C and D) the abnormal blood vessels of the endometriosis. Hence, inflamed tissue is vascular and the same pattern of blood vessels from the abnormal endometrium is also in the bladder, indicating that the endometrial tissue has either invaded or metastasized into the base of the bladder. The two scans (B & D) show the bladder wall is intact. Hence, these are endometriosis that has metastasized or spread to the base of the bladder. 

FIG 2: In this image set, we have an endometrioma, which is (again) a large black area where the fluid is black, and within it, there's another nodule with the circle indicated by the red highlight.  We see that there's no blood flow in this- hence, it's not a primary cancer of the bladder.  In addition,  it is not particularly active inside the bladder, however, there is a stalk that is feeding blood vessels to the cystic area.  With the 3D Doppler, we can quantify the cyst in seconds, because 3D takes a dataset in 15, 20 seconds of a hundred, 150 pictures of the whole area, including the blood flow.  

Notice the 3D images on the left with the red circle (Scan A) is the endometrial cyst, which is black, and the circle shows a small nodule within the cyst. What's important with this as contrasted to the previous study is this is NOT VASCULAR, which means this is inactive or subclinical at this time. On the right (E,F,G,H), we see that the pedicle that's going to the cyst and feeding the cyst, the area has multiple blood vessels in it. Because we're using 3D volumetric technology, we are able to quantify the number of vessels in the pedicle. The more blood vessels in the pedicle, the more aggressive the disease is. So back to the cyst. The cyst, there were no vesicles, but the pedicle feeding the cyst had a 13% ratio of blood vessels to assisted tissue. 

EPILOGUE
Traditional medicine has not assisted with the mental depression, the anguish of the certainty that the pain will be monthly and the possible side effects including infertility. Since we've been using targeted therapies with lasers and focused ultrasound energies years ago, we are now globally using bioenergy treatments that is the near infrared laser and the pulse electromagnetic fields to calm down the, the inflammatory process of this inflammatory disorder.


ROBERT L. BARD, MD  (Diagnostic Imaging Specialist)- Having paved the way for the study of various cancers both clinically and academically, Dr. Robert Bard co-founded the 9/11 CancerScan program to bring additional diagnostic support to all first responders from Ground Zero. His main practice in midtown, NYC (Bard Diagnostic Imaging- www.CancerScan.com) uses the latest in digital Imaging technology has been also used to help guide biopsies and in many cases, even replicate much of the same reports of a clinical invasive biopsy. His most recent program is dedicated to the reporting of mental health diagnostic and innovative solutions including the use of modern neuromagnetic technologies and protocols in his MEDTECH REVIEWS program. 



EDITOR

ROBERTA KLINE, MD (Educational Dir. /Women's Diagnostic Group) is a board-certified ObGyn physician, Integrative Personalized Medicine expert, consultant, author, and educator whose mission is to change how we approach health and deliver healthcare. She helped to create the Integrative & Functional Medicine program for a family practice residency, has consulted with Sodexo to implement the first personalized nutrition menu for healthcare facilities, and serves as Education Director for several organizations including the Women’s Diagnostic Health Network, Mommies on a Mission. Learn more at https://robertaklinemd.com/



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