How Endometriosis Is Diagnosed [and Why It’s Often Misdiagnosed]
Learn how endometriosis is diagnosed. Endometriosis can go undiagnosed for years, but understanding the diagnosis process can help you access treatment sooner.
·November 6th, 2021
How endometriosis is diagnosed is determined by your doctor. Methods include pelvic exam, ultrasound, and surgery.
Endometriosis is easy to mistake for something else.
Confirming endometriosis is tricky, as surgery is the only way to be sure.
Complementary treatments may help you get relief of endometriosis symptoms.
Sound Cycle can help you find the right treatment and practitioner for you.
Understanding how endometriosis is diagnosed can speed up treatment. Endometriosis is a tricky disease that can be hard to detect, easy to misdiagnose, and difficult to treat. Understanding the diagnosis process can help speed things along, and several alternative and complementary therapies can help to manage painful symptoms in the meantime.
How endometriosis is diagnosed
Endometriosis is an illness of the female reproductive system, although, very rarely, persons with male reproductive organs can get it too.
Doctors can use several methods to confirm a diagnosis of endometriosis:
Gynecological exam. A physician manually examines your pelvis, through the vagina and the rectum. It’s a way to discover big lesions (clumps of tissue or cysts that grow on your internal organs).
Imaging techniques.Ultrasound is one of the most common ways to confirm the presence of endometriosis. This is done through the vagina or externally through the belly. Sometimes an MRI is necessary to detect deep endometriosis.
Hormonal medication. Sometimes, doctors diagnose endometriosis by a trial of hormonal birth control or other hormonal medications to find out if the therapy helps relieve pain.
Surgery. Laparoscopy is currently the most accurate option to diagnose endometriosis. Under general anesthesia, the doctor makes a small cut in the abdomen, near the navel. With a very thin probe, they examine the pelvis from the inside. If they find endometrial tissue, they remove it.
Criteria to diagnose endometriosis
When do doctors make an endometriosis diagnosis?
If you arrive at the clinic with certain symptoms, your physician may suspect endometriosis and order some tests.
Pain is the most common symptom in people dealing with endometriosis. In one review of seven studies, approximately 25 percent of individuals who had laparoscopic surgery because of pelvic pain were confirmed to have endometriosis.
Getting definitive confirmation of endometriosis can be challenging. Visualizing abnormal tissue growing in places it shouldn’t through laparoscopy is the most reliable method. Tissue samples are then tested in the lab to confirm the diagnosis.
Doctors have found endometrial lesions in surprising places. While they mostly develop on ovaries, fallopian tubes, and around the uterus, there have been confirmed cases of endometriosis in the intestines, rectum, and even the brain.
While researchers are working on less-invasive ways to confirm an endometriosis diagnosis, for now, laparoscopy is the gold standard.
Why does it take so long to diagnose endometriosis?
Getting an early diagnosis of endometriosis is crucial. By starting treatment early, you can avoid severe pain and other health complications. If you’re thinking of getting pregnant in the future, it’s especially important to get endometriosis under control.
Endometriosis can go undiagnosed for years
Data on delayed diagnosis of endometriosis is shocking. In Germany and Austria, the average time from symptom start to a definitive diagnosis is over 10 years.
Statistics from the United States are a bit more optimistic; however, the mean time from symptoms to confirmation is still a staggering 4.4 years. Americans wait approximately two years before seeking consultation for endometriosis symptoms.
Sometimes people don’t go to the doctor for years because their condition doesn’t cause discomfort. This can be dangerous because people can have extensive endometriosis with only mild symptoms.
Doctors may also have a hard time connecting endometriosis with difficulty getting pregnant. In some cases, small endometriosis changes lead to serious consequences.
Another thing to consider is that endometriosis develops over time. For some people, the early symptoms are mild, and they won’t seek medical assistance for a few years. This delays diagnosis and treatment.
Why is endometriosis often misdiagnosed?
Statistics from Austria and Germany from the study mentioned earlier reveal another worrying fact about endometriosis: Approximately 74 percent of study participants had had at least one misdiagnosis.
So, why is endometriosis so often incorrectly diagnosed?
Endometriosis is hard to recognize because many of its symptoms are present in other conditions. Even if your doctor notices lesions on an ultrasound, they will not know for sure what they are until they take a look during surgery.
For some people, endometriosis doesn’t show up in the usual ways. For example, they may not have much menstrual pain, but they may suffer from digestive problems, such as constipation. Doctors may begin treatment for a gastrointestinal issue like irritable bowel syndrome (IBS), leaving the real cause undetected.
What can you do to speed up diagnosis?
Educate yourself about endometriosis. The more you understand your body, the better you can explain your symptoms to your doctor. Track your symptoms and make connections between pain and phases of your cycle.
Get regular checkups. Because for some people, endometriosis doesn’t cause much discomfort for years, it’s important to do regular checkups with your OB-GYN.
Don’t underestimate your symptoms. Some experts point out that the delay in endometriosis testing and treatment can be exacerbated by our society’s attitude toward women and femme presenting people.
For example, many people think menstrual pain or painful sex are normal and there’s nothing to be done about it. Don’t accept pain as a normal part of life. Get help if symptoms persist.
Find an endometriosis specialist. Look for doctors with a strong track record of treating endometriosis. An OB-GYN specializing in this condition is a good starting point. Consider getting additional treatment from a complementary medicine practitioner.
Complementary and alternative medicine treatments for endometriosis
While Western medicine has the tools to diagnose and treat endometriosis, complementary medicine and alternative remedies can be helpful in managing symptoms. Here are some of the complementary therapies people often use for endometriosis symptoms:
Acupuncture. This ancient method of treatment with fine needles can help reduce period pain connected to endometriosis.
Herbal medicine. Plant-based remedies have been used for centuries to treat menstrual cycle disorders and promote fertility. Modern studies suggest that certain plants, such as curcumin (or turmeric) may have a positive impact on hormones and development of endometrial tissue.
Nutritional therapy. A nutritionist or dietitian can help you choose foods and supplements that are beneficial for endometriosis. For example, fish oil combined with B12 vitamins has shown a positive impact on symptoms. Further studies are needed to give us a better understanding of the link between nutrition and endometriosis.
Behavioral therapy. Not all the damage that endometriosis can do is to your body; your mind may suffer as well. Behavioral therapy, including cognitive behavioral therapy (CBT), can teach you techniques to combat the emotional effects of chronic pain. It can also teach you to reframe pain to better manage it. Behavioral therapy can be particularly valuable if you’re experiencing fertility challenges.
Empower yourself on your endometriosis journey
Endometriosis is a difficult disease, but it’s not hopeless. Getting an accurate diagnosis and starting treatment early will help you get things under control. Follow our blog to learn more about endometriosis and alternative therapies that can help manage symptoms. Find a menstrual wellness provider to help you manage them by visiting our provider directory today.