Diagnosing endometriosis can be a complicated, lengthy process. Doctors usually start by evaluating a person’s symptoms and ordering tests, but surgery is the only way to definitively diagnose the condition.
If a healthcare professional suspects endometriosis, they may order blood tests and perform a pelvic exam. They may also use medical imaging techniques such as ultrasound and MRI. While these cannot always identify endometriosis tissue, they can rule out other conditions and aid in reaching a diagnosis.
Laparoscopy, or keyhole surgery, is the only way to diagnose endometriosis. Doctors use it to both identify and treat the condition.
Read on to learn more about the stages of endometriosis diagnosis, what to expect, and questions to ask a doctor. It also includes the firsthand experience of Gabby Craig, who reached her own endometriosis diagnosis after seven years.
People with endometriosis have endometrial-like tissue growing outside the uterus. This can cause symptoms such as severe pelvic pain, pain during sex, heavy menstrual bleeding, and pain when going to the bathroom. The pain is often long lasting, cycling with the menstrual cycle and worsening over time.
If a person has endometriosis symptoms, a doctor will typically
Symptom evaluation
First, a healthcare professional will take a detailed family history and ask about a person’s symptoms. They may ask a person to keep a symptom journal to determine how they relate to their menstrual cycles.
Gabby’s story: Early symptoms
“At age 17, I started the discussion surrounding the severity of symptoms I experienced with my menstrual cycle. Hormonal issues, weight gain, and emotional issues were brushed off as I was a teenager taking antidepressants with a prior history of anxiety and depression.
After starting birth control, my pain would continue but the severity of the bleeding was a rollercoaster. I remember bleeding for three weeks, and the only explanation the doctor could provide was that ‘my body was adjusting to the pill.’ The pain was dismissed as pelvic floor myalgia, and if I would just work out and train my core a little bit more, I wouldn’t have so much pain with my period.
From the time I was 18 to the time I was 20, I had tried a variety of hormonal birth control – from the pill to the NuvaRing. Nothing worked.”
Initial tests
If a person’s doctor suspects endometriosis or another gynecological condition, they may order blood tests and perform a pelvic exam.
Currently, no blood test can definitively diagnose endometriosis, so further tests are needed regardless of the results. However, certain biomarkers in the blood
Imaging tests
When diagnosing endometriosis, a healthcare professional will try to rule out other potential causes of a person’s symptoms, such as ovarian cysts, fibroids, and more. They can use imaging tests such as ultrasounds and MRIs to see a person’s uterus, ovaries, and pelvic area.
While these tests can be useful, they cannot always see endometriosis tissue. They may be able to identify endometriomas, which are present in more advanced endometriosis, but they cannot detect endometriosis tissue and adhesions. Therefore, the absence of endometriosis on an MRI does not rule out endometriosis.
Laparoscopic surgery
The gold standard for diagnosing endometriosis is laparoscopy, which is a type of keyhole surgery.
A surgeon will insert a scope into a person’s abdominal cavity to look for endometriosis tissue. If they find any, they will insert another probe to remove some of the tissue. Then, they will perform a biopsy.
Usually, laparoscopy is a last resort for diagnosing endometriosis.
Gabby’s story: Laparoscopic surgery and finding endometriosis
“The month after I turned 19, I had a 6.7-centimeter cyst removed from my left ovary. This had been my first laparoscopic surgery, and I didn’t know what questions to ask. I went to follow up with my gynecologist, but he refused to see me so I found another doctor.
13 months later I went in for a second cyst removal. It was then that the doctor explained that he found endometriosis covering both ovaries and my uterus, and they had removed it.
Six months later, I was once again experiencing severe pain with no relief. The doctor I was seeing had explained to me that there was no way my endometriosis had grown back — after getting yet another second opinion, I went in for my third surgery to then have it removed again.
It was during this surgery that I lost my ovary to cyst and endometriosis complications. After another six months when my pain returned yet again I was referred to a specialist.”
There are two main types of surgery for endometriosis: laparoscopy and laparotomy.
Laparoscopy
With
In some situations, doctors can diagnose endometriosis by simply identifying lesions in the pelvis or abdomen during laparoscopy. However, if a person has small lesions, doctors may need to take a sample for biopsy testing.
Studying the sampled lesion under a microscope can confirm an endometriosis diagnosis.
In addition to being a diagnostic tool, surgery is also a treatment for endometriosis. During the procedure, a surgeon can cut out endometriosis tissue.
People who are diagnosed with endometriosis and trying to conceive may also have surgery to improve their fertility.
Learn more about laparoscopy for endometriosis.
Laparotomy
A laparotomy is a major surgery of the abdomen. The goal is to remove endometriosis lesions, but sometimes doctors also remove the uterus, ovaries, and fallopian tubes.
However, complete removal of the sex organs does not guarantee that endometriosis lesions will not grow back.
People who have surgery for endometriosis should follow their doctor’s postsurgery instructions to avoid or minimize complications. One
Endometriosis is notoriously difficult to diagnose. On average, a person experiences a delay in diagnosis by
The reasons for this are:
- a lack of specific diagnostic tests for endometriosis
- a variety of nonspecific symptoms, such as pain and discomfort
- a wide range of symptoms that suggest other conditions of the genitals or gastrointestinal tract
One major barrier to diagnosing endometriosis is the similarity of endometriosis symptoms to those of menstruation. Many people experience significant pain before and during their menstrual periods, and they may not know this is a sign of endometriosis. They may think severe pain is typical.
Additionally, many people assigned female at birth take hormonal birth control for a range of reasons. This is also a treatment method for endometriosis that can lessen symptoms. Therefore, people with undiagnosed endometriosis who take hormonal birth control may be unknowingly treating their condition.
As they are somewhat reducing their symptoms and may also be taking pain relievers, a person may not know they have endometriosis symptoms.
Many people also have difficult experiences with healthcare professionals. They may tell a person that their pain is usual, or they may diagnose them with another condition, such as premenstrual dysphoric disorder (PMDD) or irritable bowel syndrome (IBS).
Due to endometriosis diagnosis being a complicated and lengthy process, some doctors may not take the time to consider a person’s symptoms and perform all the necessary tests. If a person has endometriosis symptoms and feels their doctor is not taking appropriate action, they should seek a second opinion if possible.
Gabby’s story: Ignored pain and accidental diagnosis
“Prior to my second laparoscopy, endometriosis was brought up as a possibility for my continued pain. At this point, I knew nothing about the disease and thought it best to just listen to the doctors. I didn’t know to push for a laparoscopy to be diagnosed.
Because my mother was not diagnosed it was never taken into serious consideration. My diagnosis was essentially an accident during the second surgery.”
Each person’s experience with endometriosis may differ, and it can be difficult to diagnose.
As symptoms can be general and subjective, many people may not know how to discuss these with a doctor and feel overwhelmed. However, it is important to ask questions during a doctor’s appointment — preparing questions in advance can help a person get the most out of their visit.
Questions to ask a doctor about how endometriosis is diagnosed may include:
- Will a pelvic exam or ultrasound be painful? What should I expect, and how can I prepare in advance?
- Is hormone therapy a long-term treatment for endometriosis? What are the side effects?
- What are the risk factors for delaying the diagnosis of endometriosis?
- Are there other conditions that may be causing my symptoms, and if so, how are those diagnosed or ruled out?
- What are the next steps after this test, and what do the possible results mean?
- If this imaging test does not show endometriosis, what does that mean? What are the next steps in reaching a diagnosis?
- What is the difference between painful menstruation and pain from endometriosis?
- What treatment options are available, and what are their side effects? Is it safe for me to take these medications long-term?
- What should I know about potentially getting pregnant in the future, and how can I preserve my fertility?
Gabby’s story: Seven years to diagnosis
“My pain became so consistent and severe that I had to stop dancing. I was in school as a dance major, looking to become a dance movement therapist specializing in pediatric autism, but I had to give that up.
The stress that I was under from not knowing what was going on with my body and the stress of the disease itself caused me to gain around 40 pounds that I am still unable to lose. Mentally, I was disconnected, waiting for the next time that I couldn’t get out of bed because of pain and nausea.
I was exhausted from fighting with myself to try and understand what was happening. I was sick and tired of going in and out of doctor’s offices with no answer as to why this was happening to me.
Even after my official diagnosis, the disease weighs heavily on me. My heart breaks every time I have to remind myself that children may not be in my future because, for some unknown reason, my body has gone through the process of a disease that makes me more likely to be infertile or experience a miscarriage or ectopic pregnancy.
I look at myself in the mirror not feeling positive toward my reflection because no one told me that the foods I enjoy exacerbate the disease and cause more issues. I struggle with flare-ups and wonder if I will ever find true relief from something that has taken over my life.”
The Endometriosis Association is an international organization with members worldwide, including people with endometriosis, families, doctors, and scientists.
The mission of the Endometriosis Association is to provide education and support to those affected by endometriosis. The organization is also working on finding a cure for endometriosis.
Research funded by the Endometriosis Association explores possible preventive measures and treatments for the condition.
Learn more about endometriosis in our dedicated hub.
Gabby’s story: Advice for others
“Do your own research and fight for yourself. No one knows your body the way you do, and you will be the first to know.”
Endometriosis is a gynecological condition that doctors may find challenging to diagnose. People wait an average of 4–11 years for a diagnosis. There are several tests doctors use to rule out other conditions, but laparoscopy is the only way to definitively diagnose endometriosis.
Laparoscopy is a surgery that doctors perform to diagnose and treat endometriosis. If a person with ongoing endometriosis symptoms is unable to get a diagnosis, they should seek a second opinion.