Through research conducted by King Edward VII’s Hospital, there are around 6 million women in the UK currently struggling with symptoms of undiagnosed women’s health problems, including endometriosis.
Mr Kuhan Rajah, Consultant Gynaecologist at King Edward VII’s Hospital, is a specialist in the condition and says that the problem is multi-faceted.
“The delay in diagnosis is due to several reasons including the normalisation of symptoms by both patients and healthcare professionals. The fact that endometriosis symptoms are wide ranging and may be attributed to other conditions, also causes a delay in a referral to a gynaecologist.”
“I think the most important factor is that an ultrasound scan, which is almost always performed as an initial screening test, can only accurately diagnose endometriosis if performed by an expert operator and unfortunately this is often not the case.”
In this article, Mr Rajah talks about how endometriosis is diagnosed and what steps you can take to help speed up your diagnosis.
What is endometriosis?
Endometriosis results in the cells of the lining of the womb (called the endometrial lining) to migrate into the pelvic cavity and beyond. These cells behave in the same way as when in the womb, by bleeding during the menstruation phase of each menstrual cycle.
But unlike when in the womb, this blood cannot leave the body through the vagina, and instead builds up in the pelvic cavity. This leads to scarring, inflammation and severe pain, especially around the time of a period.
The scarring caused by endometriosis can become so severe that it begins to fuse the pelvic organs such as the bowel and bladder together or to the womb, leading to further complications.
Endometriosis causes gynaecological symptoms including painful, heavy periods, cramping and painful sex. However, it can also cause non-gynae symptoms, including painful bowel movements and pain on passing urine, bowel symptoms including constipation, diarrhoea and bloating, lower back or leg pain and fatigue.
What information will my doctor need before diagnosis?
If you’re experiencing the symptoms of endometriosis, the first step in getting a diagnosis is speaking to your GP. It will be helpful for both you and your GP to arrive at your appointment armed with information about the symptoms you experience, how severe they are, how long they last and how they might vary at different points of your menstrual cycle.
In order to gather the most valuable information, it’s advisable to keep a diary of your symptoms and how they coincide with your period and menstrual cycle.
Aim to keep this diary for around six weeks, to include at least one full cycle and include how your symptoms affect your day to day life, including how they might affect you emotionally as well as physically.
From there, your GP will be able to arrange an appointment with a gynaecologist who specialises in diagnosing and managing the symptoms of endometriosis.
What tests are used to diagnose endometriosis?
Your consultant will arrange one or more tests and investigations to help them confirm that you have endometriosis (or attribute your symptoms to something else). Each test is looking for the presence of endometrial tissue or scar tissue within the pelvis.
The initial investigation is usually a transvaginal ultrasound. An ultrasound creates an image of your internal organs by using high frequency sound waves.
A transvaginal ultrasound is an internal investigation and involves your specialist passing a long, thin ultrasound device into your vagina. They will then be able to view images of your womb, ovaries, fallopian tubes, cervix, vagina and bowel on a screen.
This shouldn’t hurt, but it may feel uncomfortable, and the whole procedure should only last a few minutes. Your specialist will use a jelly-like lubricant to make the process more comfortable, and you’ll be lying back on a special bed, with your legs apart and covered by a paper sheet or blanket.
You may also have an MRI, or magnetic resonance imaging scan, to allow your consultant a better look at the inside of your pelvis.
An MRI scan creates images of the soft tissues using radio waves and magnets and is an external procedure that will involve you lying down and being passed slowly into a ring-shaped machine, fully clothed.
You may find the noise of the machine disturbing, but it’s a short procedure that lasts around half an hour. You will be offered headphones to help distract you as you’ll need to lie still throughout.
Some patients require a surgical procedure called a gynaecologic laparoscopy. This is a minimally invasive procedure carried out whilst you’re asleep under a general anaesthetic and usually takes around 30 to 60 minutes.
Your surgeon will make two or three small surgical cuts in your abdomen, including one through your belly button, and will then pass a long, thin instrument called a laparoscope into your abdomen. This instrument has a light and a camera on the end and allows your surgeon a clear and direct view of your pelvic organs.
This procedure may take longer if your surgeon decides to treat any endometriosis or scar tissue found at the same time.
How is endometriosis confirmed?
Endometriosis is confirmed by the detection of endometrial tissue outside of the womb, most commonly within the pelvis on ultrasound, MRI scan or during a laparoscopic procedure.
The results of an ultrasound scan may be discussed with you at the time of the scan, if it’s performed by a gynaecologist with expertise in ultrasound. If not, then you may have to make an appointment with your consultant shortly afterwards.
MRI scan findings are usually discussed after being looked at by a radiologist. Your surgeon will normally discuss the findings of a laparoscopy on the same day as surgery, once the effects of the anaesthetic have worn off.
Either way, your consultant will then discuss your next steps with you and how to best manage your symptoms.
Is there a grading system for the severity of endometriosis?
There is no grading system for endometriosis based on the severity of symptoms. Broadly speaking, endometriosis can be divided into superficial and deep disease.
There are grading systems that grade the severity of endometriosis based on surgical or imaging findings including the revised American Society for Reproductive Medicine, the American Association of Gynecological Laparoscopists and ENZIAN classifications.
However, the severity of the symptoms you experience will not necessarily correlate to the severity of your endometriosis diagnosed through these classifications. For example, someone with deep endometriosis may experience mild symptoms and someone else with superficial endometriosis may experience severe symptoms.
Ultrasound and MRI scanning can accurately diagnose deep endometriosis if performed by an expert scanner who can also map out the areas affected. However, you may still have superficial endometriosis even if an ultrasound and MRI scan don’t highlight a problem. It may only be diagnosed during a laparoscopy.
If you’re unsatisfied with the findings of a transvaginal ultrasound and an MRI scan, speak to your consultant about the possibility of a gynaecologic laparoscopy.
● If you’re experiencing the symptoms of endometriosis, speak to your GP about a referral to a specialist. (Don’t have a GP? Book a same day appointment with a KEVII private GP)
● The King Edward VII’s Hospital Endometriosis Centre is fully equipped with the latest medical assessments, diagnostics and treatments for endometriosis. Make an enquiry.