From Diagnosis to Treatment: Creating Your Personal Endometriosis Care Plan

Disclaimer: This blog is intended for informational purposes only and is not a substitute for professional medical advice. Always consult with a qualified healthcare provider regarding your personal health needs.

Written By Nicole Notar, Endo Excision for All 

Living with endometriosis requires a personalized approach to care. This guide will help you navigate the journey from diagnosis to developing an effective treatment plan that addresses your specific needs.

Endometriosis affects at least 190 million girls, women, and people assigned female at birth (AFAB) worldwide [1]. It is characterized by tissue similar to the uterine lining growing outside the uterus, often in various locations throughout the body. While commonly considered a reproductive disorder, endometriosis is a whole-body disease that can affect multiple organ systems. Lesions have been found not only in the pelvic region but also in the thoracic cavity, diaphragm, lungs, heart, lymph nodes, and other distant sites [2, 6].

This systemic disease can cause severe pelvic pain, infertility, and a wide range of symptoms depending on the location of the tissue growth. Although symptoms often correlate with menstrual cycles, endometriosis can occur before menarche (the first menstrual period) and persist or recur after menopause [2, 6]. Despite its high prevalence and significant impact on quality of life, diagnosis is often delayed—many patients suffer for years without receiving appropriate care.

Recognizing the Signs

Common Signs of Endometriosis Include: 

• Severe Menstrual Cramps

• Abdominal or back pain during or between periods

• Heavy menstrual bleeding

• Pain during sex

• Infertility

• Pain or discomfort during bowel movements [3]

Some individuals may also experience gastrointestinal issues like bloating, diarrhea, or constipation. Others may have no symptoms at all [3].

Getting a Proper Diagnosis

Doctors may suspect endometriosis based on your medical history and a physical exam. While imaging tests like ultrasound and MRI can help identify signs, a definitive diagnosis often requires laparoscopy—a minimally invasive surgical procedure that allows direct visualization of tissue in and around the uterus [4].

Unfortunately, access to early diagnosis and effective treatment is limited, especially in low- and middle-income countries [2]. On average, patients wait 7–10 years from the onset of symptoms to diagnosis [5], which can result in disease progression and worsening symptoms.

Creating a Comprehensive Care Plan

Once diagnosed, developing a personalized treatment plan is crucial. Here's how to get started:

1. Assemble Your Healthcare Team

Because endometriosis can impact multiple systems and cause a wide variety of symptoms—pain, fatigue, infertility, gastrointestinal and urinary issues [6]—a multidisciplinary team may be needed:

• A gynecologist or reproductive endocrinologist who specializes in endometriosis. Look for those trained in excision surgery (complete removal of lesions), which is more effective than ablation (burning the surface). Many general gynecologists claim expertise without proper training, so vet carefully.

• A pain specialist

• A pelvic floor physical therapist

• A mental health professional

• A dietitian or nutritionist

2. Understand Your Treatment Options

There is currently no cure for endometriosis. Treatments aim to manage symptoms and vary based on effectiveness, side effects, cost, and availability [2].

Medications:

• NSAIDs (e.g., ibuprofen) for pain relief

• Hormonal therapies (birth control pills, patches, hormonal IUDs)

• GnRH agonists and antagonists (which reduce estrogen levels)

• Aromatase inhibitors (used in stubborn cases or postmenopausal endometriosis)

Surgery:

• Laparoscopic excision surgery is the gold standard for removing lesions, adhesions, and scar tissue [2, 4].

• Complex cases may require collaboration between gynecologists, colorectal surgeons, and urologists [3].

Fertility Treatments:

• Options include laparoscopic surgery, ovarian stimulation with intrauterine insemination (IUI), and in vitro fertilization (IVF) [2].

Complementary Approaches:

• Pelvic floor therapy and central sensitization treatment

• Acupuncture, which may reduce pain and inflammation

• Diet changes, especially anti-inflammatory diets and identifying trigger foods (e.g., gluten, dairy)

• Exercise, particularly gentle activities like yoga

• Stress management, including meditation, breathing techniques, and mindfulness

3. Track Your Symptoms and Treatment Responses

Use a journal or symptom-tracking app to monitor:

• Pain patterns: Rate pain (0–10), describe location and timing, and note the type of pain (sharp, dull, cramping, etc.)

• Symptom changes: Track fatigue, digestive issues, urinary symptoms, sleep, mood, and menstrual cycle impact

• Medication effects: Note relief timelines, duration, and side effects

• Treatment responses: Document improvements (e.g., "Pain reduced from 8/10 to 4/10 after 3 months on hormonal therapy")

Identifying symptom triggers—such as certain foods, stress, or physical activities—can guide care adjustments.

4. Become Your Own Advocate

Early diagnosis leads to better outcomes [7], but lack of awareness continues to delay care [7]. To advocate for yourself:

• Prepare questions before appointments

• Bring your symptom tracker

• Speak honestly—don’t downplay your pain

• Bring a support person

• Seek second opinions if needed

5. Plan for Long-Term Management

Endometriosis is a chronic condition. Symptoms can recur even after surgery [4]. Regular follow-ups are essential to monitor for tissue regrowth and adjust your treatment plan.

Promising Developments in Endometriosis Care

New advancements are on the horizon:

• Maraciclatide, a radio-labeled imaging agent developed by Serac Healthcare, helps detect lesions that are hard to see with MRI or ultrasound. It binds to the αvβ3 integrin molecule and has received FDA Fast Track Designation for its potential in diagnosing superficial peritoneal endometriosis [8].

• Medical cannabis is under investigation for its anti-inflammatory properties. Western Sydney University is currently conducting clinical trials [8].

• Non-hormonal therapies from companies like FimmCyte are in development. These aim to help the ~30% of patients dissatisfied with current hormonal or surgical treatments due to side effects or lack of efficacy. Clinical trials are expected to begin in 2025 [8].

You’re Not Alone

Many people with endometriosis find valuable support through community groups and nonprofits. Organizations like the Endometriosis Foundation of America, SHE+ Foundation, and Endo Excision for All offer educational resources, specialist referrals, advocacy tools, and peer support.

Creating a personalized endometriosis care plan is an evolving process. As your needs change and new treatments emerge, stay informed and work closely with your care team. You deserve to live a life with less pain and more peace.

References

1. Mayo Clinic. (2024, August 30). Endometriosis - Diagnosis and treatment. https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661

2. World Health Organization. (2023, March 24). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis

3. Cleveland Clinic. (2023, September 1). Endometriosis: Causes, Symptoms, Diagnosis & Treatment. https://my.clevelandclinic.org/health/diseases/10857-endometriosis

4. Johns Hopkins Medicine. (n.d.). Endometriosis. Retrieved May 21, 2025, from https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis

5. AJMC. (2023, May 19). Racial Disparities Associated With Endometriosis Diagnosis. https://www.ajmc.com/view/racial-disparities-associated-with-endometriosis-diagnosis

6. ScienceDirect. (2024). Endometriosis: recent advances that could accelerate diagnosis and improve care. https://www.sciencedirect.com/science/article/pii/S1471491424001667

7. EndoFound. (2025, February 13). Early Diagnosis Changes Endometriosis Care: Conference 2025. https://www.endofound.org/early-diagnosis-changes-endometriosis-care-2025-conference

8. Labiotech. (2024, July 3). Endometriosis: How biotech is pioneering new patient options. https://www.labiotech.eu/best-biotech/endometriosis-research-latest-advancements/