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.
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.
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.
Even if your pelvic and/or abdominal examination was normal, your doctor may recommend an ultrasound to look for signs associated with endometriosis.
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.
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.
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.
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.
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. But 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.
If endometriosis is diagnosed, your gynaecologist will produce a detailed description of any abnormalities they found. This will include where in your body abnormalities were seen and how much endometriosis was found. Sometimes the surgeon may record this as stages from 1 to 4 that relate to the amount and thickness of any adhesions or scar tissue, inside your pelvis.
- 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 may well be in a lot more pain than a patient with Stage 4 endometriosis.