Table of ContentsView AllTable of ContentsHow Do Healthcare Providers Usually Diagnose Endometriosis?Possible Warning Signs of EndometriosisQuestions to AskEndometriosis Diagnosis: What Do Providers Look For?Which Diagnostic Test Confirms Endometriosis?Diagnostic Laparaoscopic SurgeryEndometriosis Diagnosis From Ultrasound: Is It Possible?Misdiagnosed ConditionsAfter an Endometriosis DiagnosisNext in Endometriosis GuideEndometriosis Treatment Options
Table of ContentsView All
View All
Table of Contents
How Do Healthcare Providers Usually Diagnose Endometriosis?
Possible Warning Signs of Endometriosis
Questions to Ask
Endometriosis Diagnosis: What Do Providers Look For?
Which Diagnostic Test Confirms Endometriosis?
Diagnostic Laparaoscopic Surgery
Endometriosis Diagnosis From Ultrasound: Is It Possible?
Misdiagnosed Conditions
After an Endometriosis Diagnosis
Next in Endometriosis Guide
Across the globe, there is a delay of between seven and nine years for endometriosis diagnosis.Endometriosisis 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.
Zorica Nastasic / Getty Images
The gold standard for endometriosis diagnosis is alaparoscopic excision surgery, with confirmation viahistopathology(looking at the tissue under a microscope).
During surgery, the surgeon cuts out suspected endometriosis lesions and sends the tissue to apathologistwho looks at it under a microscope to confirm whether it is endometriosis or not.
If you suspect you have endometriosis, consider these steps:
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.
Stay alert to possiblewarning signs of endometriosis.
Some endometriosis warning signs include:
What Does Endometriosis Feel Like?Everyone experiencesendometriosis symptomsdifferently. Some people have gastrointestinal symptoms, like constipation and “endo belly” (bloating). Others havepainful periods, whereas others may have endometriosis pain all month. Having advanced endometriosis with no symptoms at all is also possible.
What Does Endometriosis Feel Like?
Everyone experiencesendometriosis symptomsdifferently. Some people have gastrointestinal symptoms, like constipation and “endo belly” (bloating). Others havepainful periods, whereas others may have endometriosis pain all month. Having advanced endometriosis with no symptoms at all is also possible.
Endometriosis Back Pain: Causes and Treatments
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, particularlyexcision surgeryfor endometriosis.
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:
Remember that if your surgeon’s answers are unsatisfactory to you, it is OK to seek another opinion elsewhere.
It Took a Ruptured Cyst for Me to Get the Endometriosis Care I Needed
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 theAmerican 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.
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
Endometriosis surgery is typicallylaparoscopic, 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 whencombined 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.
How Laparoscopic Surgery Treated My Endometriosis Pain
It is not possible to diagnose endometriosis fromultrasoundormagnetic 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 orendometriomas(ovariancysts). 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 Cost of Endometriosis DiagnosisThe 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.
The Cost of Endometriosis Diagnosis
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.
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:
Endometriosis vs. Fibroids
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 involvestreatmentin 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.
19 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Agarwal SK, Chapron C, Giudice LC, et al.Clinical diagnosis of endometriosis: a call to action.American Journal of Obstetrics and Gynecology. 2019;220(4):354.e1-354.e12. doi: 10.1016/j.ajog.2018.12.039Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371Cromeens MG, Carey ET, Robinson WR, et al.Timing, delays and pathways to diagnosis of endometriosis: a scoping review protocol.BMJ Open. 2021;11(6):e049390. doi: 10.1136/bmjopen-2021-049390McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Drabble SJ, Long J, Alele B, O’Cathain A.Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain.Br J Pain. 2021;15(3):345-356. doi:10.1177/2049463720961413Cleveland Clinic.Endometriosis.Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Saridogan E.Adolescent endometriosis.European Journal of Obstetrics & Gynecology and Reproductive Biology. 2017;209:46-49. doi: 10.1016/j.ejogrb.2016.05.019Shim JY, Laufer MR.Adolescent endometriosis: an update.Journal of Pediatric and Adolescent Gynecology. 2020;33(2):112-119. doi: 10.1016/j.jpag.2019.11.011Alimi Y, Iwanga J, Loukas, Tubbs RS.The clinical anatomy of endometriosis: a review.Cureus. 2018;10(9):e3361. doi:10.7759/cureus.3361Irungu S, Mavrelos D, Worthington J, et al.Discovery of non-invasive biomarkers for the diagnosis of endometriosis.Clinical Proteomics. 2019;16(1):14. doi: 10.1186/s12014-019-9235-3Mak J, Leonardi M, Condous G.‘Seeing is believing’: arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117The American College of Obstetricians and Gynecologists.Endometriosis.Soliman AM, Yang H, Du EX, et al.The direct and indirect costs associated with endometriosis: a systematic literature review.Hum Reprod. 2016;31(4):712-722. DOI: 10.1093/humrep/dev335Johnston JL, Reid H, Hunter D.Diagnosing endometriosis in primary care: clinical update.Br J Gen Pract. 2015;65(631):101-102. doi: 10.3399/bjgp15X683665Bontempo AC, Mikesell L.Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.Diagnosis. 2020;7(2):97-106. doi: 10.1515/dx-2019-0020Chiaffarino F, Cipriani S, Ricci E, et al.Endometriosis and irritable bowel syndrome: a systematic review and meta-analysis.Arch Gynecol Obstet. 2021;303(1):17-25. doi: 10.1007/s00404-020-05797-8Bong JW, Yu CS, Lee JL, et al.Intestinal endometriosis: diagnostic ambiguities and surgical outcomes.World J Clin Cases. 2019;7(4):441-451. doi: 10.12998/wjcc.v7.i4.441
19 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Agarwal SK, Chapron C, Giudice LC, et al.Clinical diagnosis of endometriosis: a call to action.American Journal of Obstetrics and Gynecology. 2019;220(4):354.e1-354.e12. doi: 10.1016/j.ajog.2018.12.039Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371Cromeens MG, Carey ET, Robinson WR, et al.Timing, delays and pathways to diagnosis of endometriosis: a scoping review protocol.BMJ Open. 2021;11(6):e049390. doi: 10.1136/bmjopen-2021-049390McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Drabble SJ, Long J, Alele B, O’Cathain A.Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain.Br J Pain. 2021;15(3):345-356. doi:10.1177/2049463720961413Cleveland Clinic.Endometriosis.Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Saridogan E.Adolescent endometriosis.European Journal of Obstetrics & Gynecology and Reproductive Biology. 2017;209:46-49. doi: 10.1016/j.ejogrb.2016.05.019Shim JY, Laufer MR.Adolescent endometriosis: an update.Journal of Pediatric and Adolescent Gynecology. 2020;33(2):112-119. doi: 10.1016/j.jpag.2019.11.011Alimi Y, Iwanga J, Loukas, Tubbs RS.The clinical anatomy of endometriosis: a review.Cureus. 2018;10(9):e3361. doi:10.7759/cureus.3361Irungu S, Mavrelos D, Worthington J, et al.Discovery of non-invasive biomarkers for the diagnosis of endometriosis.Clinical Proteomics. 2019;16(1):14. doi: 10.1186/s12014-019-9235-3Mak J, Leonardi M, Condous G.‘Seeing is believing’: arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117The American College of Obstetricians and Gynecologists.Endometriosis.Soliman AM, Yang H, Du EX, et al.The direct and indirect costs associated with endometriosis: a systematic literature review.Hum Reprod. 2016;31(4):712-722. DOI: 10.1093/humrep/dev335Johnston JL, Reid H, Hunter D.Diagnosing endometriosis in primary care: clinical update.Br J Gen Pract. 2015;65(631):101-102. doi: 10.3399/bjgp15X683665Bontempo AC, Mikesell L.Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.Diagnosis. 2020;7(2):97-106. doi: 10.1515/dx-2019-0020Chiaffarino F, Cipriani S, Ricci E, et al.Endometriosis and irritable bowel syndrome: a systematic review and meta-analysis.Arch Gynecol Obstet. 2021;303(1):17-25. doi: 10.1007/s00404-020-05797-8Bong JW, Yu CS, Lee JL, et al.Intestinal endometriosis: diagnostic ambiguities and surgical outcomes.World J Clin Cases. 2019;7(4):441-451. doi: 10.12998/wjcc.v7.i4.441
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Agarwal SK, Chapron C, Giudice LC, et al.Clinical diagnosis of endometriosis: a call to action.American Journal of Obstetrics and Gynecology. 2019;220(4):354.e1-354.e12. doi: 10.1016/j.ajog.2018.12.039Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371Cromeens MG, Carey ET, Robinson WR, et al.Timing, delays and pathways to diagnosis of endometriosis: a scoping review protocol.BMJ Open. 2021;11(6):e049390. doi: 10.1136/bmjopen-2021-049390McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Drabble SJ, Long J, Alele B, O’Cathain A.Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain.Br J Pain. 2021;15(3):345-356. doi:10.1177/2049463720961413Cleveland Clinic.Endometriosis.Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Saridogan E.Adolescent endometriosis.European Journal of Obstetrics & Gynecology and Reproductive Biology. 2017;209:46-49. doi: 10.1016/j.ejogrb.2016.05.019Shim JY, Laufer MR.Adolescent endometriosis: an update.Journal of Pediatric and Adolescent Gynecology. 2020;33(2):112-119. doi: 10.1016/j.jpag.2019.11.011Alimi Y, Iwanga J, Loukas, Tubbs RS.The clinical anatomy of endometriosis: a review.Cureus. 2018;10(9):e3361. doi:10.7759/cureus.3361Irungu S, Mavrelos D, Worthington J, et al.Discovery of non-invasive biomarkers for the diagnosis of endometriosis.Clinical Proteomics. 2019;16(1):14. doi: 10.1186/s12014-019-9235-3Mak J, Leonardi M, Condous G.‘Seeing is believing’: arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117The American College of Obstetricians and Gynecologists.Endometriosis.Soliman AM, Yang H, Du EX, et al.The direct and indirect costs associated with endometriosis: a systematic literature review.Hum Reprod. 2016;31(4):712-722. DOI: 10.1093/humrep/dev335Johnston JL, Reid H, Hunter D.Diagnosing endometriosis in primary care: clinical update.Br J Gen Pract. 2015;65(631):101-102. doi: 10.3399/bjgp15X683665Bontempo AC, Mikesell L.Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.Diagnosis. 2020;7(2):97-106. doi: 10.1515/dx-2019-0020Chiaffarino F, Cipriani S, Ricci E, et al.Endometriosis and irritable bowel syndrome: a systematic review and meta-analysis.Arch Gynecol Obstet. 2021;303(1):17-25. doi: 10.1007/s00404-020-05797-8Bong JW, Yu CS, Lee JL, et al.Intestinal endometriosis: diagnostic ambiguities and surgical outcomes.World J Clin Cases. 2019;7(4):441-451. doi: 10.12998/wjcc.v7.i4.441
Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217
Agarwal SK, Chapron C, Giudice LC, et al.Clinical diagnosis of endometriosis: a call to action.American Journal of Obstetrics and Gynecology. 2019;220(4):354.e1-354.e12. doi: 10.1016/j.ajog.2018.12.039
Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371
Cromeens MG, Carey ET, Robinson WR, et al.Timing, delays and pathways to diagnosis of endometriosis: a scoping review protocol.BMJ Open. 2021;11(6):e049390. doi: 10.1136/bmjopen-2021-049390
McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519
Drabble SJ, Long J, Alele B, O’Cathain A.Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain.Br J Pain. 2021;15(3):345-356. doi:10.1177/2049463720961413
Cleveland Clinic.Endometriosis.
Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008
Saridogan E.Adolescent endometriosis.European Journal of Obstetrics & Gynecology and Reproductive Biology. 2017;209:46-49. doi: 10.1016/j.ejogrb.2016.05.019
Shim JY, Laufer MR.Adolescent endometriosis: an update.Journal of Pediatric and Adolescent Gynecology. 2020;33(2):112-119. doi: 10.1016/j.jpag.2019.11.011
Alimi Y, Iwanga J, Loukas, Tubbs RS.The clinical anatomy of endometriosis: a review.Cureus. 2018;10(9):e3361. doi:10.7759/cureus.3361
Irungu S, Mavrelos D, Worthington J, et al.Discovery of non-invasive biomarkers for the diagnosis of endometriosis.Clinical Proteomics. 2019;16(1):14. doi: 10.1186/s12014-019-9235-3
Mak J, Leonardi M, Condous G.‘Seeing is believing’: arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117
The American College of Obstetricians and Gynecologists.Endometriosis.
Soliman AM, Yang H, Du EX, et al.The direct and indirect costs associated with endometriosis: a systematic literature review.Hum Reprod. 2016;31(4):712-722. DOI: 10.1093/humrep/dev335
Johnston JL, Reid H, Hunter D.Diagnosing endometriosis in primary care: clinical update.Br J Gen Pract. 2015;65(631):101-102. doi: 10.3399/bjgp15X683665
Bontempo AC, Mikesell L.Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.Diagnosis. 2020;7(2):97-106. doi: 10.1515/dx-2019-0020
Chiaffarino F, Cipriani S, Ricci E, et al.Endometriosis and irritable bowel syndrome: a systematic review and meta-analysis.Arch Gynecol Obstet. 2021;303(1):17-25. doi: 10.1007/s00404-020-05797-8
Bong JW, Yu CS, Lee JL, et al.Intestinal endometriosis: diagnostic ambiguities and surgical outcomes.World J Clin Cases. 2019;7(4):441-451. doi: 10.12998/wjcc.v7.i4.441
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