Endometriosis Diagnosis

Diagnosis of endometriosis

The Undetected Disease

Obtaining a true and correct diagnosis for Endometriosis can be one of the most drawn out, frustrating, and distressing experiences for many women.

These women know there is something wrong with their health, but in most cases they are dismissed by their doctors as being neurotic, or told that their symptoms are normal or given an inaccurate diagnosis, which in many cases is that of Pelvic Inflammatory Disease.

If you are suffering from any of the symptoms associated with endometriosis, you need to get diagnosed to find out what is causing your pain.

If your doctor appears unsympathetic or dismisses your symptoms, then you need to assert your suspicions of the seriousness of your health problems.

You may need to consider changing your doctor to get a second opinion if you own GP is not helpful. The longer that this disease goes undiagnosed the more damage it can do. It is well documented that for many women, it can take anything up to ten years to finally get a true diagnosis.

Keeping a journal or diary of your symptoms will really help when going to see your doctor. GP's and consultants rely on your medical history. By documenting your pain and other symptoms, you can provide them a clearer picture of your health and hopefully speed up diagnosis.

‘When I was a teenager, my GP told me “It will all go away after you have a baby, it will reset your hormones’.

Part of the problem that causes the delay in diagnosis, is that many people in the medical profession are not fully aware of the extent of this disease today. It is suspected that between 10 to 20 percent of women of reproductive age have the disease.

Also, many women have not even heard about Endometriosis, so they do not seek help when they do have symptoms, because many of them think their symptoms are normal. In fact a lot of women have only found information about endometriosis from the internet and from friends rather than from their doctor.

Another reason there is a delay in diagnosis relates to the fact that the symptoms may initially be attributed to a variety of other health problems like fibroids, kidney stones, irritable bowel syndrome, as well as pelvic inflammatory disease.

Methods of Diagnosis

There are a variety of methods that can be used to assess whether a woman has Endometriosis, but the only reliable way to confirm the presence of the disease is by visually inspecting the abdominal organs by a procedure called a laparoscopy. Before a laparoscopy is done a full gynaecological evaluation should be done covering the patient’s medical history.

Diagnostic methods can include:

Physical examination

A pelvic examination involves the physician feeling and looking for abnormalities that are associated with endometriosis. Physical findings depend on the severity and location of the disease. There may be palpable nodules or tenderness in the pelvic region, enlarged ovaries, a tipped-back (retro-displaced) uterus, or lesions on the vagina or on surgical scars.

Laparoscopy for diagnosis

A laparoscopy is an exploratory procedure that allows the physician to see inside the pelvic region to observe and check for endometrial growths. The procedure involves making a small incision near the navel and inserting a laparoscope (a long, thin, lighted instrument) into the abdomen.

The abdomen is distended with carbon dioxide gas to make it easier to see the abdominal organs. Usually, the endometrial growths can easily be seen. Because Endometriosis implants or growths vary in appearance and can be mistaken for other conditions, the lesions should be surgically removed and examined under a microscope to confirm the presence of the disease.

Imaging tests

Imaging tests (e.g. pelvic ultrasound, magnetic resonance imaging) may be used to identify individual endometrial lesions, but they are not used to determine the extent of the disease. The implants are not easily identified using this method.

Biochemical markers

There has been extensive investigation of a membrane antigen called CA-125 in women with Endometriosis. Several reports suggest that levels of CA-125 are elevated in women with Endometriosis, particularly those in the advanced stages of the disease.

A recent study of this antigen level, showed it to be high in 90 percent of women with Endometriosis. Possible diagnosis with a blood test to check levels of CA-125 could be used to check for the disease.

New Non-invasive Tests for Endometriosis

Two non-invasive tests can now be used to speed up the diagnosis of endometriosis in primary care while further evidence of their accuracy is collected, following a recommendation from the National Institute for Health and Care Excellence (NICE). People in England and Wales who think they may have endometriosis will soon be able to ask their GP for these tests for quicker diagnosis.

It is hoped this will be a game-changer and will cut the 7 to 10 years wait that women currently face.

One is a spit test that looks for genetic material. The other measures electrical signals in the gut using sensor pads on the abdomen. Both are being recommended under new guidance for the NHS in England and Wales, alongside regular checks, to help identify the disease.

Endosure and Endotest

The saliva test, called Endotest, is already being used in a pilot NHS study, while Endosure - the gut electrical signal test - is part of a clinical study at the Worcestershire Acute NHS Hospital Trust, UK.

The Endotest analyses tiny molecules called microRNAs in your saliva using advanced technology and artificial intelligence (AI). Women with endometriosis have unique patterns of microRNAs in their saliva, like a molecular fingerprint that can be detected and analysed. The test examines 109 different microRNAs to create a comprehensive picture of what’s happening in your body.

How Accurate is the test?

96.7-97% sensitivity: This means the test correctly identifies endometriosis in nearly all women who have it.

93-100% specificity: The test accurately rules out endometriosis when it’s not present.

This test will really speed up the process of obtaining a diagnosis of endometriosis which is simple and non-invasive. The results are available in 10 to 14 days and the test can be repeated if necessary.

There may be limitations to the accuracy of this new saliva test which will only come to light after continued use. A voluntary open web-based survey was conducted in Germany in November 2023 requesting feedback among endometriosis specialists and the endometriosis research foundation of Germany, assessing the quality and viability of using the saliva test.

In terms of specific questions, more than 90% found the costs high; almost 85% did not believe that the test replaces standard diagnostic tools.

The concern with a test like the saliva test remains that a misdiagnosis may still occur as there is still room for error. No biomarker, even the most advanced one, can replace what an experienced doctor can determine during a thorough consultation in the office.

Endometriosis is often misdiagnosed

In a survey of over 10,000 women conducted by the UK All-Party Parliamentary Group (APPG) on endometriosis, over half reported visiting their GP more than 10 times before receiving a diagnosis.

Endometriosis is frequently misdiagnosed, with an average delay of 7 to 10 years and a misdiagnosis rate exceeding 75%

If you suspect at all that you may have endometriosis and are not getting any answers from your doctor it is advised to obtain a second opinion.

RISK FACTORS FOR ENDOMETRIOSIS

Factors that raise the risk of endometriosis include:

Never giving birth.
Starting your period at an early age.
Going through menopause at an older age.
Short menstrual cycles — for instance, less than 27 days.
Heavy menstrual periods that last longer than seven days.
Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces.
Low body mass index.
One or more relatives with endometriosis, such as a mother, aunt or sister.

Note - these are RISK factors and not definite reasons that may lead to developing endometriosis

Endometriosis is measured in stages:

Stage 1 - minimal disease, superficial and filmy adhesions
Stage 2 - mild disease, superficial and deep endometriosis
Stage 3 - moderate disease, deep endometriosis and adhesions
Stage 4 - severe disease, deep endometriosis, dense adhesion

Note - The severity of the disease does not equate to the stage of the disease. Some women with stage 1 can have severe symptoms and women with stage 4 can have mild symptoms.

A further explanation of the stages of endometriosis can be found HERE

What does the disease look like!

Endometriosis can develop in almost any colour, shape, size and location. This includes clear, microscopic implants that can lodge themselves on the underside of organs or beneath the skin. The implants can be black, blue, red, brown, clear, and vary from microscopic to clearly visible in size.

The implants or growths can be spread throughout the entire abdominal cavity including the bowel, bladder as well as the outer walls of the uterus, the ovaries and fallopian tubes. One of the most common sites for endometrial growths is on the ovaries.

To conclude

Endometriosis is a complex and serious whole-body inflammatory disease that has far reaching effects on the entire body with disabling symptoms. It is a serious disease and can be found in nearly every organ of the body and can cause a lot of damage if left untreated. Therefore you need to assert with your doctor the need for a diagnosis if you suspect you have endometriosis,

Diagnosis of endometriosis

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