How to Get an Endometriosis Diagnosis

Across the globe, there is a delay of between seven and nine years for endometriosis diagnosis. Endometriosis is an often painful inflammatory disease in which tissue similar to the endometrium (the tissue that lines the uterus) grows elsewhere in the body. Both patients and researchers agree that the road to endometriosis diagnosis is rife with barriers and potential misdiagnoses.

Receiving an endometriosis diagnosis is essential whether you are symptomatic or asymptomatic. Diagnostic delays can lead to physical complications like infertility, poor quality of life, mental health, and financial impacts.

In this article, learn more about how to get an endometriosis diagnosis.

How Do Healthcare Providers Usually Diagnose Endometriosis?

The gold standard for endometriosis diagnosis is a laparoscopic excision surgery, with confirmation via histopathology (looking at the tissue under a microscope).

During surgery, the surgeon cuts out suspected endometriosis lesions and sends the tissue to a pathologist who looks at it under a microscope to confirm whether it is endometriosis or not.

If you suspect you have endometriosis, consider these steps:

• Keep a symptom log: Write a daily note recording any symptoms and how they impacted your ability to engage in everyday tasks. Healthcare providers often look for objective information, so consider rating your pain and other symptoms on a scale of 1–10 and recording symptom location and adjectives describing the sensation.

• Advocate for yourself: Women's pain has historically been dismissed. Research on individuals with endometriosis reveals that pre-diagnosis, healthcare providers often told them their pain was "normal" or to "tough it out." It is important to advocate for yourself to your healthcare provider about the severity of your symptoms and how they impact your life. Consider writing down notes before your appointment to aid in this difficult conversation.

• Bring a patient advocate: Another way to advocate for yourself is to bring along a trusted person, such as a parent, partner, friend, or even a board-certified patient advocate who can speak to how your symptoms impact you.

• Learn your family history: Endometriosis runs in families. Before your appointment, ask your family and note anyone else diagnosed with endometriosis, experienced infertility, or has endometriosis symptoms.

These steps may help you feel more comfortable and confident when approaching your healthcare provider to seek an endometriosis diagnosis. It is also always OK to seek a second (or third) opinion.

Possible Warning Signs of Endometriosis

Stay alert to possible warning signs of endometriosis.

Some endometriosis warning signs include:

• Pelvic pain

• Abdominal pain

• Painful periods

• Painful bowel movements

• Abdominal bloating

• Pain radiating down legs

• Painful urination

• Painful sex

• Constipation and/or diarrhea

• Infertility

Everyone experiences endometriosis symptoms differently. Some people have gastrointestinal symptoms, like constipation and "endo belly" (bloating). Others have painful periods, whereas others may have endometriosis pain all month. Having advanced endometriosis with no symptoms at all is also possible.

Endometriosis Questions to Ask a Healthcare Provider

If you suspect that you have endometriosis, it is important to receive care from a healthcare provider specializing in endometriosis, particularly excision surgery for endometriosis.

Many gynecologists can perform endometriosis surgery, but not every gynecologist is an endometriosis expert in endometriosis expert. Most perform a procedure called ablation, in which they burn the surfaces of suspected endometriosis lesions, leaving behind underlying tissue and not allowing for diagnosis by a pathologist.

Research has also found that one year after surgery, those who had excision surgery had significantly improved menstrual pain, painful bowel movements, and chronic pelvic pain compared to those who had ablation surgery.

Some questions to ask your potential endometriosis surgeon include the following:

• Do you recommend a surgical diagnosis, imaging, medical suppression, or something else?

• How often do you perform endometriosis surgery?

• Is your practice dedicated solely to endometriosis care?

• Do you collaborate with a colorectal surgeon or any other specialty surgeon?

• Do you use the excision or ablation technique, or both?

• Will you send tissue samples to a pathologist for diagnosis?

• What experience do you have with endometriosis outside the pelvis (diaphragmatic, thoracic)?

• Are you skilled in excising endometriosis, no matter the location?

• Are there situations in which you would leave endometriosis behind?

• What methods do you use to prevent adhesions (scar formation) from surgery?

• What do surgery preparation and recovery entail?

• What is the recurrence rate of endometriosis, or repeat surgery rate, in your practice?

• Are there potential complications I should be aware of?

• Is there any possibility of organ removal (appendix, ovary, uterus)? What is the plan if you find endometriosis in these organs?

• If we don't find endometriosis during surgery, what are my next steps for diagnosis?

• What health insurance do you accept?

Remember that if your surgeon's answers are unsatisfactory to you, it is OK to seek another opinion elsewhere.

Endometriosis Diagnosis: What Do Providers Look For?

Your healthcare provider might bring up the possibility of endometriosis if you report symptoms like pelvic pain, pain with sex, painful periods, painful bowel movements, and more. They may become particularly alert to the possibility of endometriosis if the disease runs in your family.

Endometriosis Diagnosis Considerations for Adolescents

Teenagers can have endometriosis, too. Missing school or activities due to period pain or chronic pelvic pain may indicate that your teen has endometriosis. However, diagnosing endometriosis in teenagers is particularly difficult, and medical professionals disagree on the best course of action.

In some cases, they may prescribe birth control for "period pain" before they investigate endometriosis. Birth control is essential in treating symptoms and helps many people experience symptom improvement without the necessity of surgery.

Adolescent endometriosis can also have a different appearance than adult endometriosis, leading to a risk of missing endometriosis during surgery entirely or partially if an expert doesn't perform it. Some providers may advise against surgery due to fear of endometriosis progressing and repeat surgeries required in later years, although there is no evidence to support this approach.

Diagnostic Criteria for Suspected Endometriosis

There are currently no diagnostic criteria for suspected endometriosis. The decision to pursue laparoscopic surgery to diagnose endometriosis is typically personalized depending on your surgeon's recommendations, your personal health history, and preferences.

However, a standardized scoring system for "staging" any endometriosis found during surgery exists. The oldest and most common scale is the American Society of Reproductive Medicine (ASRM) staging system. A critical drawback of this system is that it scores endometriosis based on its potential impact on fertility and is unrelated to the severity of symptoms.

Which Diagnostic Test Confirms Endometriosis?

No singular test detects endometriosis. Scientists are currently investigating possible biomarkers of endometriosis. This is an ongoing area of research, but to date, they have found no definite biomarker.

Diagnostic Laparoscopic Surgery Confirms Endometriosis

The only way to definitively diagnose endometriosis is by histopathology after surgery.

Endometriosis surgery is typically laparoscopic, which means only tiny incisions are made. It is minimally invasive and considered very safe, with rarer complications.

According to endometriosis specialists, laparoscopy remains "irreplaceable" and is the only true way to diagnose endometriosis when combined with biopsies and pathology.

However, some experts debate whether surgery is necessary to diagnose endometriosis because medication can manage some suspected cases without any surgery required.

Endometriosis Diagnosis From Ultrasound: Is It Possible?

It is not possible to diagnose endometriosis from ultrasound or magnetic resonance imaging (MRI). However, transvaginal ultrasound and MRI may still apply throughout the diagnosis process.

Both imaging methods may show certain forms of endometriosis, such as advanced deeply infiltrating lesions or endometriomas (ovarian cysts). Knowing the locations of possible endometriosis can aid your surgeon in planning your surgery.

Neither ultrasound nor MRI typically shows superficial endometriosis, which can cause as much pain as (and sometimes more than) deeper endometriosis. "Negative imaging" (in which no endometriosis is found) does not mean you do not have endometriosis and shouldn't justify forgoing surgery.

The average yearly cost of endometriosis in the United States is $12,118 per patient. Testing, misdiagnoses, and surgery (especially with out-of-network endometriosis excision specialists) can cost a great deal.

However, delaying endometriosis diagnosis can be even more expensive. In 2016, the average indirect yearly cost of endometriosis relating to the loss of productivity due to untreated symptoms was $15,737 per patient.

Misdiagnosed Conditions Instead of Endometriosis

The symptoms of endometriosis can mimic those of other conditions. This combined with normalizing women's pain and the invasiveness of endometriosis diagnosis can lead to misdiagnosis.

According to one study, 75% of people with endometriosis were misdiagnosed with another physical health condition, and 50% were misdiagnosed with a mental health condition. In that study, the diagnostic delay was an average of 8.6 years.

Some conditions that may be misdiagnosed instead of endometriosis include:

• Irritable bowel syndrome (IBS)

• Large intestine tumor

• Colon or rectal cancer

• Ovarian cancer

• Anxiety or depression

• Urinary tract infections (UTIs)

• Sciatica

• Migraine

• Fibromyalgia

• Pelvic inflammatory disease (PID)

• Pelvic floor dysfunction

• Appendicitis

• Fibroids

• Painful periods

What Happens After an Endometriosis Diagnosis

The first step after receiving an endometriosis diagnosis is to recover from surgery. Immediate surgery recovery time will vary from a week to over a month, depending on the severity of the case.

Because endometriosis diagnosis also involves treatment in the form of removing endometriosis lesions and correcting internal anatomy, some people find they feel much better and don't require additional treatment.

When symptoms persist, a surgeon may refer you to a pelvic physical therapist or prescribe suppressive medications.

Finally, you may benefit from seeking support from a counselor or therapist; endometriosis is an incurable, potentially painful disease, and a diagnosis can come with many feelings. Talking about how you feel with a supportive professional isn't going to treat your endometriosis, but it could help relieve stress and improve your mental health.

Summary

Endometriosis is a potentially painful condition that can significantly impact your quality of life. Getting an endometriosis diagnosis can be a long process involving testing, misdiagnoses, and eventually, surgery. Finding an endometriosis excision is ideal for receiving a proper diagnosis and treatment. Due to various factors, including a diagnosis that requires surgery and pathology, there is a long diagnostic delay of seven to nine years.