Endometriosis is a very complex and often misunderstood condition. It oftentimes takes 10 years to be diagnosed (that was my story!). Getting diagnosed and preparing for surgery can be intimidating and confusing – especially when the medical gaslighting is insane.
Let’s dive into what you need to know about endo. Send this to someone you know who may be going through this journey too.
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Author: In On Around Founder & CEO, Catherine Power.
- Published On:
- Updated On: April 23, 2026
Table of Contents
First and Foremost - About Endometriosis
Endometriosis isn’t just gynecological. It is a full-body, inflammatory, chronic disease.
The name itself is technically incorrect. The endometrium is the lining of the uterus. Endometriosis lesions are not made of the endometrium (this has been debunked). Instead, they’re made of a different kind of cell (that can even create its own source of estrogen and nerves). It hijacks our nervous system, immune system, inflammation, and so much more.
And newsflash: it acts similarly to cancer.
It impacts (at least) 1 in 10 women… I suspect these numbers to be seriously underreported.
- It has been found in nearly every area of the body – not just the reproductive organs
- It can affect the bowels, bladder, diaphragm, lungs, and even more distant areas
- It does not only cause “bad periods” – it can cause daily, systemic pain and dysfunction
- Pain level does not correlate with severity – someone can have severe disease with mild symptoms, or debilitating pain with less visible disease
- It is often progressive if not properly treated
- Imaging (like ultrasounds or MRIs) frequently misses endometriosis, especially deep infiltrating disease
- There is no cure, but proper surgical excision can significantly reduce symptoms and progression
- Hormonal treatments may help manage symptoms, but they do not eliminate the disease
- It can impact fertility, but it is not just a fertility disease
- It affects quality of life, mental health, energy levels, and overall functioning
Most importantly:
- Endometriosis requires a highly skilled, specialized surgeon – not just a general gynecologist
- The goal should be complete excision (removal at the root), not burning or suppressing lesions
This is a complex, whole-body disease that deserves far more awareness, research, and proper treatment than it currently receives.
Classic (And Oftentimes Overlooked) Symptoms
Imaging can be normal. Labs can be normal. Symptoms can still be very real. You do not have to have all of these symptoms to have endo. Sometimes you’ll have 1 or 2, other times you can have “silent” endometriosis (or only find out about it if you’re going through fertility struggles or having GI issues).
- Heavy Menstrual Periods
- Painful Periods
- Very common symptom, but not the only one! Many doctors will ask “do you have painful periods?” and if the answer is no, they can sometimes rule out endometriosis, which is not best practice.
- Fatigue
- Brain Fog
- Pelvic Pain
- Pain doesn’t always correlate with stage. Someone with Stage 1 can have severe debilitating symptoms, while someone with Stage 4 can have “silent” endo.
- Infertility or Recurrent Miscarriage
- Over 50% of “unexplained infertility” is really endometriosis
- FIGHT for a root cause if you’re experiencing fertility issues
- Gastrointestinal Issues – Bloating, Gas Pains, Diarrhea, Constipation
- If you have “IBS,” you should highly consider endometriosis. IBS is a nonsensical umbrella-term diagnosis.
- Kidney or Bladder Issues
- Not-so-fun fact – endometriosis on the ureters can potentially cause issues with kidney function, so if your kidney blood markers are off, this is something to look into.
- Painful Bowel Movements (or Severe Gas Pains)
- Painful Urination
- Frequent Urination
- Ovulation Pain
- Bleeding or Spotting Between Periods
- Painful During or After Intercourse
- Low Back Pain
- Pain Radiating Down the Legs
… And MORE. This is not an exhaustive list.
There is also a significant amount of overlap with autoimmune conditions, POTS, MCAS/hives, EDS, Interstitial Cystitis, Pelvic Floor Dysfunction, Ovarian Cysts, and more. If you have other autoimmune conditions or symptoms, you should consider endometriosis, in my opinion.
Endometriosis Diagnosis
- Goal standard: laparoscopic surgery
- This is currently the only definitive way to diagnose endometriosis. A surgeon visually identifies lesions and may remove and send tissue for pathology.
- Other scans:
- Transvaginal Ultrasound
- Pelvic MRI with and without contrast
- Sometimes: CT Scan to review kidney/bladder involvement
- Pelvic Exam
- Symptom review with an endometriosis specialist
Important Limitations in Diagnosis:
- Imaging can be normal even in severe disease
- There is often a significant delay in diagnosis (commonly 7–10 years)
- Severity of pain does not correlate with stage
- “Negative tests” do not rule it out
- The surgeon must be highly experienced in endometriosis, as lesions can be subtle, clear, or missed entirely by non-specialists.
- Some clinicians may also use bloodwork like CA-125, but it is not specific or reliable enough to diagnose or rule out endometriosis.
Down the line, there may be better tests (like menstrual blood biomarkers, saliva or blood-based inflammatory markers, epigenetic testing, etc) to diagnose this in a better way besides relying on surgery. We can hope!
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Tips for Getting Surgery - Red Flags to Be Aware Of
- Focus on excision, not ablation
- Ablation is especially common outside of the United States.
- You must use an endometriosis-specialized surgeon, not a typical OBGYN – even if they say they can perform the surgery, get an expert. This is a highly specialized field.
- “Diagnostic surgery” is also common (just going in to take a look, without removing anything). Personally, I think this is exposing someone to unnecessary surgery. Instead, consult with an endo specialist who can diagnose and treat in the same surgery.
- The right surgeon should be able to remove all the disease
- Some doctors (especially those within the fertility/IVF space) will say that IVF bypasses endometriosis, and they can just “suppress” you with medicines like Lupron. While this has been successful for some people, this is not necessarily true, especially for more advanced disease.
- If they push the birth control pill or IUD without further discussion, be wary. Those medications have side effects that you need to be aware of.
- Major red flag: “We’ll only know once we go in” with no pre-op planning discussion
- Experienced surgeons usually discuss possible locations of disease, risks, and surgical strategy beforehand.
- You want to discuss the full-body impact (bowel, bladder, diaphragm, nerves). Do they need additional support from a colorectal surgeon? These scenarios should be discussed.
Finding A Surgeon & Questions To Ask
** Note – some of the big surgeons in major cities (like NYC) can have a two-year waitlist. Personally, I couldn’t wait this long. Be sure to interview multiple surgeons to find the right fit for you. Don’t know where to start with potential surgeon options? Nancy’s Nook is a good starting point.
Print These Questions Out For Your Surgeon Consult:
Surgical Technique & Precision
- Do they perform excision or ablation… or both? In what situations?
- Do they send all removed tissue to pathology for confirmation?
- How precise are they with using the robot? Are they getting all lesions?
- How do they identify deep infiltrating endometriosis?
- How deep can the robot go?
- How many layers deep into tissue have they operated on? What’s the deepest?
- If endometriosis is multiple layers deep, how do they ensure it’s fully removed?
- What is the approach if disease is found in unexpected or high-risk areas?
- Do they use specialized imaging (MRI with endometriosis protocol, expert ultrasound) before surgery?
Areas Examined & Treated
- Do they check the diaphragm and thoracic cavity?
- Do they treat deep-infiltrating endometriosis in all locations?
- Do they work with a team (colorectal surgeon, urologist, thoracic surgeon) if needed?
Organ Preservation & Reconstruction
- Do they correct/reconstruct or save a misaligned uterus?
- Do they typically remove or preserve the uterus and ovaries?
- Are they able to restore anatomy when organs are stuck together?
- How will surgery affect fertility?
Ovarian & Related Conditions
- Have they removed chocolate cysts (endometriomas) on the ovaries?
- Do they treat adenomyosis and fibroids, or only endometriosis?
- Can all conditions be treated in one surgery, or are multiple surgeries needed?
Advanced/Complex Procedures
- Do they perform bowel resections if needed?
- What level of complexity are they comfortable handling in a single surgery?
Outcomes & Recurrence
- What is the recurrence rate after 1 year? 5 years?
- Do patients typically need multiple surgeries, or is one often sufficient?
Surgeon Experience & Volume
- How long do surgeries typically last?
- How many endometriosis surgeries have they performed:
- Per day
- Per week
- Per month
- How many total patients have they treated?
- Do they specialize in endometriosis or perform it occasionally?
Training & Qualifications
- How many years have they been using the robotic system?
- What type and extent of robotic training have they received?
Risks & Safety
- What potential complications or adverse outcomes have patients experienced post-op?
- How are complications managed if they occur?
Logistics, Cost & Planning
- How soon can surgery be scheduled?
- What is the recovery timeline (realistic, not ideal)
- Will an operative report and photos or video of surgery be provided?
- What is the pain management plan for after surgery?
- Are any medications or antibiotics required before surgery? After surgery?
- What is the total cost of surgery? Do they take insurance?
Tips for Surgery
- Prepare that you will need help for at LEAST a few days to get up, walk around, feed yourself, go to the bathroom, and more. Even if you think you’ll be okay post-surgery, please do your best to have help from family or friends to support you during the healing process.
- REST – like, a lot. More than you would think.
- Between rest, try to gently walk – even if it’s just for 5 minutes around the room. This can help with the gas pains.
- Hydrate. Hydrate. Hydrate.
- Take your meds according to your doctor’s/surgeon’s instructions! There’s a time to be “crunchy” and holistic, but there’s also a time to take your meds, so you’re not in severe pain.
- Take pictures of incisions (only if they’re uncovered) or bruising every day to track healing
- Sit up slowly. Your body just went through a lot – take it slow.
- Give yourself grace and time to heal. Don’t compare yourself to other people’s healing.
- Wear loose, comfortable clothing
- Watch for constipation and plan ahead with stool softeners
What To Buy For Surgery
- Heating Pad
- Miralax
- Pads
- Easy to digest foods (broths, applesauce, crackers, bananas)
- Grabber/reacher tool
- Nightgown (helpful to not have a pants waistband on any incisions)
- Red light therapy device
- Wet wipes (helpful if showers are difficult in the first few days)
- Peri Bottle
- If needed, a cane or walker – this was helpful during days 1-2 while in the hospital (I didn’t use it outside of the hospital)
Lifestyle Tips If You’ve Been Diagnosed with Endometriosis
- Live a non-toxic lifestyle – Learn more about how to do that HERE.
- We have a ton of low-tox products linked HERE.
- This is one of the BEST things I have ever done for myself, and significantly reduced the amount of inflammation in my body.
- Cut out plastic
- Eat low-inflammatory – Learn more about that HERE.
- Cut out or limit: alcohol, ultra-processed foods, processed sugar, excessive caffeine, gluten, dairy (if it bothers you)
- Stabilize blood sugar
- Support your liver and gut function – Learn more about that HERE.
- Regulate your nervous system
- Avoid burnout
- Work with a naturopathic doctor to improve gut health, like with a GI-MAP
- Focus on regular, consistent movement
Additional Resources
- In On Around – for everything related to non-toxic product swaps
- Nancy’s Nook – for community-recommended endo specialists
- Dr. Brighten – Podcast – in-depth information about the disease
- Endometriosis Facebook Groups – to learn from others experiencing the disease (great places to ask questions)
If you’re going through an endometriosis journey, know that you’re not alone. It can be scary. Overwhelming. Painful. Traumatic. But you’re not alone – and there’s a large community of endo warriors online that are here to support you.
Let me know your thoughts and key takeaways in the comments below!
xoxo,
Want to read more? Check out our other articles here!
Other references on endometriosis from: Endo Found, Mayo Clinic, The Endometriosis Foundation, ACOG, Yale Medicine
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