Here's What You Need To Know About Diagnosing Endometriosis

Endometriosis is an inflammatory condition characterized by the growth of endometrial glands and cells outside the uterus. These cells are hormone-dependent, just like the endometrium from which they came, so they function the same way, with cyclical bleeding which often causes pain. 

Endometriosis affects 5-10% of women¹ of reproductive age. However, this prevalence is higher among women with infertility. This condition is accompanied by various symptoms such as intense pelvic pain, chronic fatigue, infertility, pain associated with sex, urination, and constipation. 

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Is endometriosis hard to diagnose?

Endometriosis is difficult to diagnose because some of its symptoms like dysmenorrhea or painful menstrual periods are common in other gynecological conditions. 

Diagnosis also becomes particularly difficult because many women don’t seek a diagnosis² for their pain due to the belief that nothing can be done about it. Moreover, it normally takes between 4-11 years³ to receive a diagnosis, which makes the path to answers difficult and painful. 

Other symptoms associated with endometriosis, such as heavy periods, pelvic pain, painful sex (dyspareunia), painful urination (dysuria), painful defecation (dyschezia), and chronic fatigue can be very generic and attributable to a range of other conditions. These include irritable bowel syndrome (IBS) and pelvic inflammatory disease (PID), and makes identifying endometriosis without surgery a very difficult task. 

How is endometriosis diagnosed?

Patient clinical history and physical examination

In every clinical diagnosis, a thorough clinical history should be taken. This is to assess a wide range of things, including what symptoms are present, when they began, factors that caused them, and possible lifestyle or environmental causes. Given the similarities of endometriosis to several other conditions, a thorough clinical assessment, including a physical exam, is essential. The physical examination will help your doctor assess whether or not there are any endometriosis deposits in your vagina or deep deposits in your rectovaginal area. However, a physical examination will not detect any abnormalities when the endometriosis is in the ovaries or other areas of the pelvic cavity. 

This is why the physical exam should be performed in conjunction with ultrasound imaging for a thorough assessment of symptoms that may be due to endometriosis. 

Imaging

Transvaginal ultrasound (TVS) is often the first method used to pursue a diagnosis of endometriosis. This method is particularly useful in detecting endometriomas in the ovaries (cyst-like structures filled with brown blood, thus they are given the name “chocolate cysts”). 

TVS is readily available, cheap, non-invasive, and has a specificity and sensitivity rate of nearly 90%.⁴ A unique element of ultrasound is that it performs dynamic imaging, where the sonographer applies pressure to your abdomen and/or internal structures with the transducer. 

This allows the sonographer to record the free movement of the tissues away from the pressure. If the tissues do not move, then adhesions⁵ are the likely culprit. Adhesions are where structures are fused or tethered due to the formation of scar tissue, often as a result of endometriosis-derived local inflammation or surgical scarring. 

Pain during the ultrasound exam⁴ can also point to endometriosis. You may experience the pain over the site of the endometriosis deposits, and, if ovarian cysts related to endometriosis are present, you can feel the pain with pressure on the ovaries from the transducer. 

MRI is also another option for diagnosis and is highly accurate in detecting ovarian endometriomas (OMAs) and deep infiltrative endometriosis (DIE), two of the three subtypes of endometriosis. MRI can also be used to identify adenomyosis, which is when the endometrium grows into the muscle layer of the uterus.

MRI is less sensitive and specific⁴ when diagnosing endometriosis compared to TVS. However, it has added benefits of being less invasive and less operator dependent, albeit more costly and harder to access. 

Laparoscopy

The gold standard for the diagnosis of endometriosis is laparoscopy (keyhole surgery), which is used to look for and identify lesions within the pelvic cavity. 

The added benefit of this method, despite it being invasive, is that it can result in the visualization of the entire pelvis, removal of the endometriosis lesions, and the accurate staging of the disease, all of which helps with its management. 

Disease biomarkers (bloodwork)

A lot of research is now focused on non-invasive methods of diagnosis which include the analysis of biomarkers, specific biological compounds that the endometriosis tissue releases or causes to be generated. 

However, the evidence is not conclusive yet, which is likely due to the complex nature of endometriosis and the diversity of its types. 

Who are the medical professionals involved in diagnosing endometriosis?

The path to a diagnosis of endometriosis can be complicated but that shouldn’t make you delay seeking help from the proper medical professionals if you’re struggling with the symptoms mentioned above. 

Your first option is to see your general practitioner who can perform an initial assessment and start the ball rolling in terms of which specialists you should see. 

Your family physician may need help diagnosing or treating your symptoms, in which case they will refer you to an obstetrics-gynecologist (OB-GYN). An OB-GYN is a doctor who specializes in care related to women’s reproductive systems. The OB-GYN will take your detailed medical history and perform a pelvic examination., You can also request the OB-GYN to perform a TVS on you. 

A sonographer, or ultrasound technician, is the person who normally performs the TVS. 

Results from the TVS can aid your OB-GYN in the diagnosis of the OMA and DIE endometriosis phenotypes and assist you in surgical planning. 

Your doctor may send you for an MRI scan to better quantify any pelvic involvement but not everyone needs to have this test.Once your gynecologist has the information they need, they will discuss your treatment options with you. Some women may benefit from a trial of medical management, which usually involves the use of hormonal contraceptives like the pill or an intrauterine device to treat their symptoms. 

However, your specialist may recommend that you have surgery to formally diagnose endometriosis and treat the condition by removing any deposits identified during your laparoscopy. 

Part of what is needed³ to reduce the delays in endometriosis diagnoses are accurate and comprehensive stages. These stages are internationally adopted and take into consideration a multitude of factors that comprise the clinical picture, as well as any histological results from surgery. 

There is ongoing research in this field, which will add a lot of value to timely diagnosis and treatment. 

Why is misdiagnosis common?

Endometriosis takes a long time to diagnose. One study⁶ found that it took an average of 8 years for patients to be diagnosed from when they first experienced symptoms. 

These misdiagnoses are thought to occur for several reasons:

  • Symptoms of endometriosis are very similar to other common conditions such as IBS, PID, and ovarian cysts. 

  • Some general practitioners may not fully understand endometriosis and inappropriately normalize pelvic pain.

  • Oral contraceptives are commonly used and they can inadvertently provide symptom relief to endometriosis sufferers. Their intermittent use also changes the clinical picture. 

  • Patients are concerned about discussing menstruation with their doctor, and some normalize the pain they experience so they don’t seek help.

  • The diagnostic approach of the doctor doesn’t adequately assess for endometriosis. For example, when your doctor does not use TVS in conjunction with a physical pelvic exam. 

Helping yourself through the diagnosis process

If you are stuck in the process of trying to obtain an endometriosis diagnosis and feel like you’re at the mercy of the healthcare system, there are things you can do to facilitate the process and provide more information for your specialist. 

You can track your cycles and the symptoms you experience, particularly how they are related to your periods and note if they are alleviated by medication, certain foods, or oral contraceptives. 

You can also research gynecologists who specialize in endometriosis and go straight to the expert who can hopefully help you. 

The diagnosis process can be hard and grueling, so it is also vital to be kind to yourself and seek support where you feel comfortable. There are many endometriosis groups (in-person and online) who will understand what you are going through and may be able to provide real-world advice. 

Once you have your diagnosis, what’s next?

Once you have your endometriosis diagnosis, the next step is to start your chosen treatment option. Generally, these include medical treatment, surgery, and assisted reproductive techniques (ARTs) if you are trying to treat infertility. 

Medical treatment

Medications can be prescribed to alleviate your endometriosis symptoms. These include analgesics such as non-steroidal anti-inflammatory drugs (NSAIDs), low-dose oral contraceptives, progestins, androgens, and gonadotropin-releasing hormone analogs (GnRHa).

Oral contraceptives alleviate pain by preventing ovulation and suppressing the growth of endometrial tissue. They can be a great option for women who are not trying to conceive. 

Another common medical treatment is the levonorgestrel-releasing intrauterine system,⁷ which is inserted into the uterus and releases a low dose of the progestogen levonorgestrel for up to five years. Studies have shown this method to be very effective in reducing pelvic pain related to endometriosis and, for some women, stopping their menstrual flow. 

If you don’t respond optimally to one medical treatment, you can change plans or try a combination of options. Make sure you ask your specialist about this if you are still struggling while on treatment. 

Surgical treatment

The gold standard for the diagnosis of endometriosis is laparoscopy, which is a surgical treatment. A laparoscopy is also a therapeutic option since the surgeon can remove the lesions at the time of surgery. 

For many, this treatment provides instant relief. Recurrence can happen, but this treatment option — depending on disease location and severity — can be better at preserving fertility. 

Herbal supplements

Some women choose not to pursue standard treatments and instead rely on non-medicated options. 

Approximately 10-20% of women⁷ with endometriosis find that taking NSAIDs and/or the combined contraceptive pill does not alleviate their pain, so they may turn to alternative treatments or add them into their medical regimen.

There are a multitude of products offered to address endometriosis symptoms, but research shows that only a few are beneficial. These include thiamine, pyridoxine, vitamin E, fish oil, and magnesium. 

Even though these supplementsare readily available without a prescription, it’s wise to talk about it with your specialist, as you can experience adverse side effects. 

Diet and exercise

Following specific diets⁸ (such as a low-FODMAP diet) is thought to alleviate the symptoms of endometriosis by minimizing the exacerbation of inflammation through food choices. 

Likewise, exercise is thought to decrease the pain⁷ experienced in endometriosis, possibly due to increased blood flow into the pelvic region and through the release of endorphins, which are natural analgesics. 

Assisted reproduction techniques (ARTs)

ARTs can be very effective in helping couples conceive when they’re suffering from endometriosis-related infertility. Two predominant options are intrauterine insemination (IUI) and in vitro fertilization (IVF). 

IUI

IUI is beneficial for couples where sperm counts are normal, as sperm is then prepared in a laboratory and introduced directly into the uterus. What works best is IUI combined with drugs such as clomiphene to stimulate egg production. 

IVF

IVF is used for assisted reproduction as the eggs can be harvested and safely fertilized in a laboratory, away from the free radicals and peritoneal fluid commonly associated with endometriosis-derived infertility. 

The fertilized embryos are then transferred back to the uterus once they are established to increase the odds of successful implantation. 

The lowdown

Endometriosis is a debilitating condition, made worse by the delay in diagnosis of approximately 10.4 years. 

Even though it can be challenging to receive a proper diagnosis and management, it is important to seek help from a gynecological specialist as the long-term effects of undiagnosed endometriosis can result in debilitating pain, infertility, and reduced quality of life.

Have you considered clinical trials for Endometriosis?

We make it easy for you to participate in a clinical trial for Endometriosis, and get access to the latest treatments not yet widely available - and be a part of finding a cure.

Joining community groups and exercise programs for my condition made me feel empowered – but I want to be part of finding a cure.
Peter, 64

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