Diagnosis Pathway

A pathway is a step-by-step guide for doctors to help them identify or treat a particular disease. It lets doctors know what options are available to their patient and where patients might need to be referred next.

Endometriosis can be very difficult to diagnose because it doesn’t show up in the same way for all patients.

The National Institute for Health and Clinical Excellence (NICE) produced comprehensive new guidance on endometriosis diagnosis and management. The finalised guidance was published in September 2017.  In Wales, we have pathways that are based on the NICE recommendations but with some extra advice specific to Wales, recommended by the Welsh Government-funded Endometriosis Task & Finish Group in their 2018 report.

It is important to remember that if any of the early steps in the diagnosis pathway give normal results you may still have endometriosis. The examinations and scans can only prove that you do have endometriosis, not that you don’t and so you should then move on to the next step in the pathway.

  1. You have some symptoms of endometriosis

    Endometriosis is a difficult condition to diagnose as so many of the symptoms associated with the disease can be symptoms of other diseases.

    If your symptoms get worse at particular times throughout your monthly cycle, this could be a sign that you have endometriosis.

    Keeping a log or a diary can help you spot how your pain and symptoms might change over your cycle. It can also be very helpful when it comes to talking about your symptoms with a doctor.

  2. Abdominal or pelvic exam

    An abdominal or pelvic examination to check for unusual swelling or tenderness as well as any visible signs of the disease.

    Remember that if these examinations appear normal, it does not mean you don’t have endometriosis – just that it’s not visible from this examination.

  3. Ultrasound

    Even if your pelvic or abdominal examination was normal, your doctor may recommend an ultrasound to identify endometriomas or deep endometriosis. Their focus here will be on the the bowel, bladder and ureter.

    Remember that if the ultrasound appears normal, it does not mean you don’t have endometriosis, just that it’s not visible from this examination.

  4. Pelvic MRI

    A pelvic MRI is a type of scan that takes a number of images of inside your pelvic area. It’s able to show organs such as your womb, bladder and bowel. The scan is painless and doesn’t involve any radiation.

    Patients will usually be asked to lie still on their back on a narrow table that will then slide inside the MRI machine to start taking the images. A pelvic MRI can help identify the extent of deep endometriosis involving the bowel, bladder or ureter. The MRI scanner will make loud tapping noises at certain times during the procedure. You’ll be given earplugs or headphones to wear. More information about the procedure can be found here.

    Pelvic MRI scans should be interpreted by a healthcare professional with specialist expertise in gynaecological imaging.

    Remember that if the MRI appears normal, that does not mean you don’t have endometriosis – just that it’s not visible from this examination. For that reason, if the MRI appears normal your doctor may still refer you for further assessment if the suspicion of endometriosis remains or your symptoms persists.

  5. Diagnostic Laparoscopy

    A laparoscopy is keyhole surgery where a camera is used to see inside your pelvis. A laparoscopy is the most reliable way to diagnose endometriosis. You will usually be put to sleep (”under anaesthetic”) while the surgery takes place, which means you won’t be able to see or feel anything as it happens.

    A gynaecologist with training and skills in laparoscopic surgery for endometriosis will carefully examine inside your pelvis, as well as checking the organs that sit inside it.

    During a diagnostic laparoscopy, your surgeon might take a small sample of cells from your pelvis and have them tested for endometriosis later.

    Remember, occasionally it can be difficult for surgeons to spot endometriosis, especially in younger patients who may not show some of the typical signs of endometriosis (e.g., endometriomas). For example, lesions in adolescents may be less pronounced therefore more difficult to see. This difficulty doesn’t mean that your symptoms aren’t real or having an impact on your life. You might benefit from trying other treatment options or seeking a second opinion later on and continue to have discussions with your doctor or healthcare professional.

  6. Is it endometriosis?

    Endometriosis can be a tricky disease to identify, especially if you haven’t been seen by an endometriosis specialist or are a younger patient who may present differently than adults. For example, lesions in adolescents may be less pronounced therefore more difficult to see. If a thorough check of your pelvis is performed by laparoscopy and everything appears normal, your doctor will conclude that you do not have endometriosis.

    You may be feeling confused if, after a laparoscopy, you are told you do not have endometriosis, especially if you’re still experiencing symptoms with no definite cause. It’s worth remembering that there are other health conditions with symptoms in common with endometriosis. It’s important to discuss alternative diagnoses and ways of managing symptoms with your doctor.

    You may wish to seek further advice or a second opinion if you continue to experience symptoms with no clear idea of what is causing them.

  7. Staging

    If endometriosis is diagnosed, your gynaecologist should produce a detailed description of any abnormalities they found. This will include where in your body adhesions, spots or areas of endometriosis were found. Sometimes the surgeon may record this as stages from 1 to 4. These stages relate to a classification system developed to impact o fertility. These stages relate to the amount and thickness of any adhesions or scar tissue, inside your pelvis, especially on the ovaries.

    • Stage 1 indicates that the extent of the disease is less severe with minimal impact on fertility.
    • Stage 4 indicates thicker adhesions or scar tissue and that you are more likely to experience infertility.

    The staging system assesses the impact of the disease on your ability to fall pregnant, not the extent of your symptoms. It is very important to remember that these stages do not correlate to the amount of pain you experience. A patient with Stage 1 endometriosis can sometimes be in a lot more pain than a patient with Stage 4 endometriosis. Importantly, staging does not cover some forms of severe disease, for example when the bowel, bladder or diaphragm are affected. Because of this, many doctors are moving away from using the staging system to describe the impact of endometriosis symptoms