What To Do If You Think You Have Endometriosis

What to Do If You Think You Might Have Endometriosis

If you think you might have endometriosis, I want you to know something right away. You are not crazy. You are not weak, dramatic, or overreacting. You are paying attention to your body, and that takes strength.

Most people with endometriosis spend years being dismissed before getting answers. You don’t have to wait that long. Here’s how to start learning about your body, gathering information, and moving toward real care.

1. Build Your Care Team

Endometriosis is complex, and no single doctor can handle every part of it. Your goal is to build a care team that listens, believes you, and works together to help you heal.

• Primary Care Provider (PCP)

• Your first stop to get the process started

• Can order basic labs, imaging, and referrals

• Helps coordinate your overall health and care plan

• Many insurance plans require you to start here

• Gynecologist

• Focuses on reproductive health and menstrual symptoms

• Can rule out other conditions and provide early testing

• You may need a referral from your gynecologist to see a specialist, depending on your insurance

• Most gynecologists are not trained to diagnose or treat endometriosis fully, so use this as a starting point, not your destination

• Endometriosis Excision Specialist

• The most important person on your care team!!!

• Treats endometriosis full time and performs excision surgery (not ablation)

• Can identify and remove disease from multiple organs

• See the Find Care page of this website for more information on how to find this specialist
  

• Pelvic Floor Physical Therapist

• Absolutely essential for most people with endometriosis!

• Helps retrain muscles affected by years of pain and inflammation

• Supports pain relief, bowel and bladder function, and post-surgery recovery

• Mental Health Provider (optional)

• Supports you through the emotional impact of chronic pain and medical dismissal

• EMDR or trauma-informed therapy can help regulate your nervous system and rebuild trust in your body

• Additional Support Specialists

• Gastroenterologist for bowel symptoms (optional)

• Urologist for bladder issues (optional)

• Nutritionist familiar with anti-inflammatory or low-histamine diets (optional)

You don’t have to find everyone right away. Start with one appointment, then keep adding the right people over time. Each step brings you closer to a team that truly understands and supports you.

2. Learn About Endometriosis

While you wait for appointments, start learning everything you can about endometriosis. Understanding what’s happening in your body helps you ask better questions, recognize misinformation, and notice when a doctor may not fully understand the disease.

• Begin with the basics

• Read the What Is Endometriosis page on this site for a clear overview

• Visit the Resources page for my most trusted educational links and communities

• Explore trusted online communities

• The Endometriosis and Endo pages on Reddit are full of real patient stories and lessons from women who’ve been through it

• Pay attention to patterns in what helped others and what red flags they wish they had caught sooner

• Learn directly from specialists

• Watch videos from top excision surgeons on YouTube who treat endometriosis full time

• Look for doctors who talk about excision surgery, multidisciplinary care, and the importance of treating disease on every organ

• Focus on these key topics

• What endometriosis is and where it can grow

• Why it doesn’t show up clearly on imaging or ultrasounds

• Why specialized treatment is necessary

• Common myths and misinformation that delay diagnosis

The more you understand your body, the harder it is for anyone to dismiss your pain. Knowledge turns confusion into clarity and helps you make confident, informed choices about your care.

3. Track Your Symptoms

Start tracking your symptoms as soon as possible. It doesn’t have to be perfect or fancy. The goal is to spot patterns over time and understand what your body is trying to tell you.

• Choose a tracking method

• Use an app like P Tracker or any other period and symptom tracker that lets you log by date

• You can also use a simple spreadsheet if that feels easier

• Track as many details as you can

• Pain (location, type, and intensity on a scale of 1-10)

• Bloating and digestive changes

• Fatigue or energy crashes

• Mood or emotional changes

• Bladder symptoms

• Food sensitivities or reactions

• Anything else that feels off, even if it seems small!

• Look for patterns across your cycle

• Note how you feel around ovulation and during your period

• Track what improves or worsens throughout the month

• Endometriosis often follows hormonal patterns, so spotting these changes helps connect symptoms to your cycle

• Review your notes regularly

• The more data you have, the easier it is for doctors to take you seriously

• Patterns help rule out other conditions like IBS and strengthen your case for further testing or specialist referrals

Symptom tracking gives you proof of what your body already knows. It builds confidence in your own awareness and gives you the language to advocate for yourself.

4. Compile Your Notes for the Doctor

When you have a doctor appointment coming up, start organizing your notes. This helps you communicate clearly and makes it harder for doctors to overlook what you’re experiencing.

• Summarize your main symptoms

• Write down each symptom, when it occurs, how long it lasts, and how severe it feels

• Note how your symptoms affect your daily life- work, sleep, relationships, or exercise

• Include related body systems

• Digestive issues such as constipation, bloating, or nausea

• Bladder problems like urgency, pain, or frequency

• Fatigue, body aches, or pain that spreads beyond your pelvis

• Organize your timeline

• Record when symptoms started, what changes you’ve noticed, and what makes them worse or better

• Keep everything in one place, like a document or app, so it’s easy to update before appointments

• Bring a printed or digital copy to appointments

• Having clear notes keeps you grounded and helps guide the conversation

• It also signals to your doctor that you’re serious, informed, and paying attention

You can click here to see the actual notes I gave to my doctor before my specialist appointment. Use them as inspiration or a starting point when creating your own.

Having your notes ready turns uncertainty into clarity and helps you take control of your healthcare story. It also keeps documentation in the doctor's records, which can help you later.

5. Support Your Body

While you’re learning and waiting for care, there’s often a long stretch of time between appointments. The waiting can feel discouraging, but there’s a lot you can do during that time to support your body. You don’t need to change everything overnight. Start with small, consistent habits that reduce inflammation and help your system work more smoothly.

• Stay hydrated

• Drink plenty of water throughout the day

• Hydration supports digestion, energy, and hormone balance

• Eat a nutrient-rich diet

• Focus on whole foods, fruits, vegetables, and lean proteins

• Reduce added sugar and processed foods when you can

• Move gently every day

• Stretch, walk, or do light movement to keep muscles and fascia flexible

• Listen to your body and rest when you need to

• Limit fragrances and harsh chemicals

• Choose fragrance-free or naturally scented products for your skin and home

• Avoid synthetic fragrances and endocrine disruptors when possible

• Get enough rest

• Prioritize sleep and create calm routines before bed

• Give yourself permission to slow down when your body needs it

Your body is already working harder than most people’s just to function. The less you overload it, the more it can focus on healing and keeping inflammation down. Small changes really do make a difference over time.

6. Regulate Your Nervous System

Endometriosis doesn’t only affect the body- it impacts the nervous system too. Years of pain, stress, and medical trauma can leave your body in a constant state of alert. Calming your nervous system helps reduce pain perception, lower inflammation, and support overall healing.

You don’t need complicated routines to start. Focus on small, consistent habits that remind your body it’s safe. Here are some ideas:

• Practice deep breathing or grounding exercises

• Try slow, intentional breaths to calm your body and mind

• Use grounding techniques like the 5-4-3-2-1 method to bring yourself into the present

• Spend time in nature

• Take short walks, sit outside, or even open a window for fresh air and sunlight

• Nature helps signal safety and calm to the nervous system

• Add gentle movement

• Light yoga, stretching, or dancing can help release stored tension

• Keep it simple and focus on how your body feels, not performance

• Use your senses to self-soothe

• Try humming, listening to calming music, or using touch and scent to relax

• These small signals help your body shift out of survival mode

• Create a bedtime routine that supports rest

• Limit screen time before bed and choose calming activities like reading or journaling

• Try to keep your sleep and wake times consistent when possible

The goal isn’t perfection, it’s consistency. The more often you show your body that it’s safe, the easier it becomes to relax, rest, and heal.

7. Trust Yourself and Keep Going

You know your body better than anyone. After you’ve done your research and gathered information, trust your instincts. People will give you advice, and many doctors will sound confident even when they don’t fully understand endometriosis. Take what resonates, verify it with credible sources and common sense, and leave the rest.

• Listen to your intuition

• If something feels off, it probably is

• Keep asking questions until you find real answers

• Believe your own experience

• Pain and symptoms are valid even if tests look “normal”

• You deserve care that investigates, listens, and takes you seriously

• Keep learning and advocating

• Healing from endometriosis is a journey, not a straight line

• Keep learning, tracking, and adjusting as you go

Healing starts when you believe yourself and refuse to settle for less than real care. You are not alone in this. Keep learning, keep pushing, and keep trusting yourself.

🐺