Endometriosis: Symptoms, Diagnosis, Treatment & Care

This guide explains endometriosis symptoms, diagnosis, treatment, and when to seek care.

Endometriosis is a long-term inflammatory disease involving uterine-like tissue outside the uterus ^1,3. This tissue can cause swelling and scar tissue in nearby areas ³.

Pain, heavy bleeding, fatigue, bowel problems, and trouble conceiving may occur ^1,3. However, some people have mild symptoms or none.

Symptoms do not always match the amount of disease present ^1,10. Care should reflect pain, pregnancy goals, costs, side effects, and personal wishes ³.

This guide explains symptoms, testing, treatment choices, and reasons to request more care.

About 10% of reproductive-age women worldwide have this disease ³. Its rate among gender-diverse people remains unknown ¹. It can affect transgender men and nonbinary people who menstruate ³.

The exact cause is not known ¹⁰. Symptoms may begin after the first period and continue through the reproductive years ^2,3. Some people still have pain after menopause ¹⁰.

No current treatment removes the disease permanently for everyone ^1,3. Medicines and surgery aim to ease symptoms and reduce their effects ^1,3.

The disease often affects the ovaries and other pelvic structures ^1,2. It can involve the bowel, bladder, diaphragm, chest, or surgical scars ¹.

Doctors group pelvic disease into three main types:

Endometriosis has more than one subtype ¹. Endometriomas often occur with deep disease ¹. Finding one may lead to more tests, especially when pain is severe ¹.

Deep disease can affect the bowel or urinary system ¹. Deep disease can invade the bowel, bladder or ureter ¹. Blocked urine flow can damage a kidney ¹.

This disease can disrupt work, school, sex, and other daily tasks ^1,3. Pain, fatigue, low mood, and fertility problems may reduce quality of life ^1,3.

Long delays before diagnosis are common ^1,3. Symptoms vary and can resemble other health problems ^1,7. Some people first learn about the disease after a delay in diagnosis ¹.

Pelvic pain is a main endometriosis symptom ^2,8. It can occur alongside heavy periods ^2,10. Period pain may become severe enough to stop normal activities ^1,7.

Common symptoms can affect many parts of daily life:

Infertility may be the main concern for some people ¹. Others may have pain without infertility being the only possible concern ^1,9. Many people with the disease can still become pregnant.

Deep lesions may grow into organs near the uterus ¹. Bowel or bladder symptoms can occur ¹.

Possible bowel symptoms include the following concerns:

Urinary symptoms can include pain while passing urine ⁴. Blood may appear in urine around menstruation ¹. These problems can overlap with signs of other health conditions.

For separate information, read our UTI symptoms and treatment guide.

Symptom strength does not reliably match disease extent ^1,2. Extensive disease can cause mild symptoms or none ¹. Small areas can still cause severe pain ¹⁰.

Symptoms may vary based on the affected body area. However, they do not always reveal the disease site or extent.

Patterns can also change over time ¹. Some teens have pain without a clear monthly pattern. Such variation can make endometriosis harder for health care providers to diagnose ^1,3.

Researchers do not know the exact cause of endometriosis ^3,8. Several processes may play a role instead of one single cause.

Researchers continue to study these possible processes:

Theories about how endometriosis develops are not definitive ^1,2. A close family history is linked with higher risk ^8,10.

The disease can form adhesions, which are bands of scar tissue ³. Scarring can block the fallopian tubes and make pregnancy harder ¹⁰. Long-term pain can also affect mental health and daily life ^1,3.

An endometriosis diagnosis often begins with a full health history ^1,2. A clinician may ask where pain occurs and how long it lasts. The timing, strength, and link with periods also matter ^1,2.

A detailed review may cover these topics:

Pain scales can help describe symptom strength. Health forms may show how pain affects daily life.

A pelvic examination may find tenderness, small firm lumps, or an ovarian mass. It may also find less movement between pelvic organs.

Small lesions often cannot be felt during an examination. A normal examination does not rule out the disease. Imaging may still help after normal examination findings.

Transvaginal ultrasound is often the first imaging test ^2,4. It uses a probe placed inside the vagina. The test creates pictures of pelvic organs.

Ultrasound can find ovarian endometriomas and some deep lesions. It may also find other possible causes of pelvic pain. The examiner’s skill can affect the test’s value.

Magnetic resonance imaging is commonly called MRI. MRI is another imaging choice for suspected disease. It can assess deep lesions and help with surgery planning.

Neither test finds every lesion. Imaging often misses superficial disease. Therefore, normal scans do not rule out superficial endometriosis.

No blood test can reliably diagnose this disease ¹. Researchers are studying signs in blood and other body samples ^1,3. These tests have not replaced a standard clinical review ¹.

Most current guidelines support diagnosis without surgery ^1,3. Clinicians can use symptoms, examination findings, and imaging results ¹. Treatment may begin without surgical proof ^1,3.

Laparoscopy uses a thin camera placed through a small abdominal cut ^8,9. It lets a surgeon look for lesions ^8,9. The surgeon may collect a biopsy, which is a tissue sample ^8,9.

Laparoscopy can confirm disease and treat visible lesions. However, surgery has risks and may not stop later disease return ^1,3. Doctors may use it when proof or surgical care is needed ⁴.

Treatment should reflect symptom strength and pregnancy plans ³. Side effects, long-term safety, cost, access, and personal wishes also matter ³.

A care plan may include pain medicine, hormones, surgery, or fertility care ^1,3. Physical and emotional support may also help some people ³.

Nonsteroidal anti-inflammatory drugs are often used for endometriosis pain ³. These medicines are also called NSAIDs ³. Ibuprofen and naproxen are two examples ³.

Other pain medicines may also be considered ^3,8. The choice depends on symptoms, health needs, and possible side effects ³. Treatment does not rely on a single approach for everyone.

Hormonal medicines may reduce pain strength or frequency for some people ³. Hormonal options include birth control pills and progestin therapy ^3,8.

Common hormonal choices include the following treatments:

GnRH agonists and progestins may offer similar pain relief. However, GnRH agonists can reduce bone density. Side effects and long-term safety should guide treatment choices ³.

Some hormone methods may not suit people trying to become pregnant ³. Symptoms can return after hormonal treatment ends ³. A clinician can help compare likely benefits and side effects.

Surgery can remove lesions, adhesions, and scar tissue ^3,4. Surgery can confirm an endometriosis diagnosis ⁸.

Pain and fertility results may depend on disease extent ³. Lesions or symptoms can return after surgery ^1,3. Pelvic muscle problems can also keep causing pain ³.

A hysterectomy removes the uterus ³. Doctors may consider it when other treatments do not work ³. It is considered for people who do not plan future pregnancy ³.

Pain can remain after this surgery ³. Endometriosis lesions grow outside the uterus ^3,9. Therefore, hysterectomy does not always remove all disease ³.

Endometriosis is linked with infertility ³. Still, many affected people can become pregnant. Pregnancy goals should help shape treatment choices ³.

Fertility care may include several possible options:

An ovarian endometrioma can make planning more complex. This point matters when fertility is a concern. Specialist care may help connect fertility plans with disease treatment.

Pain may continue after treatment for visible lesions ¹. Persistent pain may involve changes in how the nervous system handles pain signals ¹. Team care may address these added sources of pain ¹.

A wider care plan may include these services:

Treatment may change as symptoms, goals, or side effects change ³. A broad plan can support both pain control and daily well-being ^1,3.

Severe period pain deserves attention when it disrupts normal activities. Earlier assessment can reduce delays before suitable treatment begins ^1,6.

Consider requesting a medical appointment in these situations:

Testing and initial treatment may happen at the same time. This approach can reduce delays in symptom relief.

Normal examination findings do not exclude the disease. Normal imaging can also miss superficial lesions. Ongoing symptoms may need more assessment.

Gynecology referral may help when initial treatment fails or cannot be used. Referral may also help when symptoms keep returning. Harm to daily activities is another reason for referral.

Specialist services may be useful in these situations:

Complex disease may need help from several medical fields ³. Multidisciplinary care can help address persistent pain ^1,6.

Endometriosis can cause pain, heavy bleeding, fatigue, and fertility problems ^1,3. Symptoms may be severe even when disease appears limited ^1,10. Some people have no clear symptoms ¹⁰.

Diagnosis often uses symptoms, an examination, and imaging ^1,3. Normal scans may miss superficial disease. Surgery is not always required before treatment begins ^1,3.

Medicines, hormonal care, surgery, and team support may ease symptoms ^1,3. Disease or pain can return after treatment ^1,3. Ongoing care should reflect symptoms, treatment access, and potential pregnancy outcomes after surgery ³.