What No One Tells You About Endometriosis—But You NEED to Know

Welcome, warrior. 💛 If you’ve ever left a doctor’s office with more questions than answers—or googled your symptoms at 3 a.m. wondering “Is this normal?”—you’re not alone. Endometriosis is wildly misunderstood, and most women are left piecing together clues by themselves. That ends here. I’ve gathered the most common (and most important) questions women like you are asking—and I’m answering them with honesty, heart, and a whole lot of hope.

1.      What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus (endometrium) grows outside of the uterus, in areas like the ovaries, fallopian tubes, and pelvic cavity. It has also been found on the diaphragm, lungs, and brain.  It is not just a period disease.

2.      Current theories that cause endometriosis?

a. Retrograde Menstruation: During a woman's period, instead of all the uterine lining leaving the body, some of it flows backward into the pelvic area. This could allow pieces of this lining to attach and grow elsewhere, forming endometriosis. However, there's debate about this theory because the cells found in endometriosis are not exactly the same as the normal uterine lining.

b. Metaplasia: This is the idea that the tissue or cells lining the pelvic area can transform into endometrial tissue. This change might be triggered by hormones or the body's immune system.

c. Hormones: The hormone estrogen seems to fuel the growth of endometriosis tissue. Additionally, this tissue may not respond properly to progesterone, which normally helps control the growth of the uterine lining.

d. Oxidative Stress & Inflammation: When there's an imbalance in the body leading to "oxidative stress," it can trigger inflammation. This inflammation involves immune cells releasing substances called cytokines, which can encourage endometriosis tissue to grow.

e. Immune Dysfunction: Normally, the body's immune system helps clear away menstrual debris. If the immune system isn't working correctly, it might fail to eliminate this misplaced tissue, allowing it to implant and grow into endometriosis.

f. Apoptosis Suppression: Apoptosis is a natural process of cell death. In endometriosis, the cells might be resistant to this process, meaning they survive longer than they should. The pathways that normally trigger cell death might be turned down.

g. Genetic: Changes in a person's genes could affect how their cells function. These changes might make it easier for endometrial cells to attach in the wrong places and avoid being destroyed by the immune system.  Notably, 9% of fetuses with uteruses present with endometriosis lesions, suggesting it is a genetic disease that may be exacerbated by environmental triggers.

h. Stem Cells: Stem cells are basic cells that can develop into different types of cells. It's possible that these undifferentiated cells, which have a natural ability to regenerate, could start the growth of endometriosis deposits.

3.      How is endometriosis diagnosed? How does a doctor test for it?

a.      Symptom Based Diagnosis: relying on reported symptoms such as pelvic pain and heavy menstrual bleeding, but these can be subjective and overlap with other conditions.

b.      Imaging Tests: techniques like transvaginal ultrasound, MRI and CT scans can help visualize endometriotic lesions, but have limited accuracy in detecting all types of endometrioses and its location.

c.       Biomarker Testing: Blood, urine, or tissue tests to detect specific proteins or molecules associated with endo, but currently lack sufficient sensitivity and specificity.

d.      Laparoscopy: surgical procedure used to visually inspect the pelvic organs and diagnose endometriosis. Considered the gold standard, but is invasive and carries surgical risks.

4.      The future of endo diagnosis

a.      Improved biomarker detection

b.      AI for image analysis

c.       Using a special real-time microscope (confocal laser endomicroscopy) to get a detailed view of the tissues while they are still inside the body. This can help them identify potential endometriosis lesions on the spot., pathologic findings during laparoscopy

d.      Multimodal diagnostics: Imaging, biomarkers, genetics and AI

e.      Genetic testing

f.       Wearable sensors: that monitor biomarkers may enable real-time, personalized endometriosis tracking.

5.      What does endo feel like?

a.      Sciatic nerve endo is one of the most common causes of leg pain from endo. Lesions can infiltrate or compress the sciatic nerve in the pelvis or along its path causing pain radiating down the buttock, thigh and even into the foot, numbness or weakness in the leg, pain that worsens during menstruation

b.      Burning stabbing or electric pain

c.       Numbness or hypersensitivity in the pelvic region worsen when sitting, relieved when standing or lying down.

d.      Endo lesions on the pelvic organs or peritoneum can cause chronic inflammation and irritate the pelvic muscles such as the piriformis, obturator internus and Iliopsoas which sends pain to the thighs or hips.

e.      Painful intercourse

f.        GI issues: bloating, IBS symptoms, constipation and diarrhea

g.      Chronic fatigue

h.      Anxiety, depression & emotional distress

6.      Can you get pregnant with endometriosis?

a.      Yes, some women are still able to conceive naturally. But this is not true for everyone woman. Sometimes excision surgery is helpful to remove the lesions, allow the body to rest and reduce inflammation making it a healthier environment for the pregnancy to go full term. Please remember, all of our bodies are different and will experience this differently.

7.      What if I have laparoscopy surgery and nothing is found?

a.      It could be the surgeon didn’t recognize it.

b.      It could be very deep lesion that wasn’t found by any instruments.

c.       It could be something else- ask for the report.

d.      **This is when AI and some testing of the proteins is really going to come in handy pre-surgery.

8.      Will it come back after surgery?

a.      Up to 28% of patients may require a repeated surgical procedure during the 10 years after complete excision of endometriosis. Conservation of the uterus is followed by an increased risk of repeated surgery. The study is based on outcomes resulting from a single surgeon, which limits the generalizability of results.

b.      Hysterectomy is not a treatment of endo for this reason.  The lesions procreate from themselves, they don’t all come out of the uterus nor the ovaries.

9.      What is the difference between excision surgery and ablation of endometriosis?

a.      excision aims to completely remove the endometriosis, like pulling out a weed by the roots, while ablation aims to destroy it on the surface, like mowing a lawn.  Excision is often preferred for more severe or deep endometriosis and for a more lasting solution.

b.      Both are coded and paid the same from the insurance company.  Many surgeons struggle with this because excision, being the ideal procedure, it much more time consuming.

10. What do you know about AI in endometriosis from JMIG?

Based on the search results, here's what we know about AI in endometriosis from the Journal of Minimally Invasive Gynecology (JMIG) and related research:

Key Themes and Applications of AI in Endometriosis Discussed in JMIG and Related Literature:

Improving Patient Education and Information Access:

o    AI tools, particularly large language models like ChatGPT, are being explored for their ability to provide accurate and comprehensive answers to frequently asked questions about endometriosis.  

o    A systematic review in JMIR AI (related to JMIG) found that AI chatbots offer accurate responses, although the sufficiency varied across different categories.  

o    AI's integration with social media can help identify patients' needs and improve how information is shared.

Enhancing Diagnosis:

o    AI is being investigated to reduce the significant diagnostic delays associated with endometriosis (often 8-12 years).  

o    AI algorithms are being developed to analyze imaging data (like ultrasound and MRI) to identify endometriosis lesions more accurately.  

o    Machine learning models are being trained on various parameters (biomarkers, clinical data, imaging, genetics) to predict the presence of endometriosis.  

o    One study developed a neural network algorithm for detecting deep rectosigmoid endometriosis with good accuracy.  

o    Researchers are creating AI models that can interact with patients and make early predictions of endometriosis based on their responses.  

o    The IMAGENDO model, developed by researchers in Australia, aims to analyze ultrasound and MRI scans for real-time assessment of endometriosis.  

o    AI is being used to analyze pain-related features and other symptoms to identify patterns indicative of endometriosis, potentially leading to less invasive diagnostic methods.  

Aiding Surgical Management:

o    AI has the potential to be integrated with robotic surgery systems to improve the detection of anatomical structures and enhance surgical outcomes by combining pre-operative imaging with intra-operative findings.

o    The FEMaLe project aims to develop augmented reality experiences using AI to provide better organ visibility and guide surgeons during endometriosis surgery.

Predicting Treatment Outcomes and Other Aspects:

o    AI can analyze patient data to predict the success of assisted reproductive techniques (ART) like IVF for women with endometriosis.  

o    AI may be used to predict treatment effectiveness and potential side effects.  

o    It could also help predict reproductive prognosis and cancer risk associated with endometriosis.  

Facilitating Research:

o    AI technologies like natural language processing and machine learning are revolutionizing data analysis, allowing researchers to extract meaningful insights from large amounts of unstructured data, including social media.  

o    AI can help identify patterns in complex datasets related to endometriosis, potentially uncovering new aspects of the disease.  

Important Considerations and Challenges:

·         Data Quality and Quantity: The effectiveness of AI algorithms heavily relies on the quality and amount of data used to train them.

·         Bias and Interpretation: It's crucial to address potential biases in data and ensure proper interpretation of AI-driven insights.

·         Validation and Clinical Trials: AI models need rigorous validation through extensive clinical trials before they can be routinely used in medical practice.

·         Ethical and Safety Concerns: The ethical implications and safety of using AI in healthcare need careful consideration.

·         Standardized Evaluation: There's a need for standardized approaches to evaluate the impact of AI on patient education and its integration into clinical practice.

In summary, JMIG and related research highlight a growing and promising role for AI in various aspects of endometriosis, from improving diagnosis and surgical management to enhancing patient education and facilitating research. While there are challenges to overcome, AI holds significant potential to improve the lives of individuals affected by this complex condition.