Despite affecting 1.5 million people across the UK, endometriosis remains notoriously difficult to diagnose
New Victoria Hospital’s leading consultant obstetrician and gynaecologist surgeon, Mr Andrew Pooley, offers advice on how the process really works by answering a few commonly-asked questions…
Endometriosis (a condition that causes tissue similar to the uterine lining to grow outside the womb) currently affects up to one in 10 women in the UK*, causing everything from chronic pain to heavy periods and even infertility, yet it remains notoriously difficult to diagnose.
Whether due to a lack of research funding or because it’s an ‘invisible’ condition most often indicated by pain, it can currently take several years and up to 10 GP trips to get that all-important diagnosis.
What’s the typical pathway to a diagnosis?
“The usual pathway to a diagnosis of endometriosis is to visit the GP then get a referral to a gynae clinic, where if symptoms are suggestive enough the patient is placed on the waiting list for a laparoscopy, which is the procedure needed to get a diagnosis.
“Essentially the patient has to approach their GP to discuss their symptoms and concerns. It is common to offer a symptom based approach initially, with pain relief and possibly hormonal contraception, as these are often effective, and most women who do approach their GP about such symptoms do not have endometriosis. If initial options are not fully effective then a referral to a gynaecologist is the next step. There are no diagnostic tests for endometriosis except a laparoscopy, which allows treatment at the same time.”
Why can it take so long to diagnose?
“There is an often quoted figure of ‘8 years to a diagnosis’ but this is misleading. The problem with endometriosis is that there is a huge overlap between the symptoms of people with and those without it.
The most common symptom – painful periods – is very common in people who have periods, regardless of whether there is an underlying condition. While those shown to have endometriosis often have the worst pains, some do not have any pains at all.
“In up to one third of people whose symptoms are bad enough to have a laparoscopy, endometriosis is not actually found in the results. Most people found to have endometriosis have always had more painful periods from puberty.
“When they rightly say they have had painful periods for 8 years, this does not mean that they have had endometriosis for all that time. The main problem is that it takes an operation to find endometriosis so there is a hesitancy to do this amongst doctors and patients.
“The issue is that a laparoscopy is the only way to see if someone has endometriosis or not and, as it is a day case operation that needs a general anaesthetic, most medical practitioners and patients will treat it as a last resort.”
What does a laparoscopy involve?
A laparoscopy is an operative procedure which is performed under general anaesthetic. A small telescope-like instrument is inserted into your tummy via a small cut below the belly button. If there are any patches of endometriosis, they can be found and treated at the same time. If necessary, the fallopian tubes can also be examined during the procedure to test for any effects on fertility.
Can endometriosis be genetic?
“It can be, but isn’t always. If a women has one or more first degree relatives (sister, mother, aunt) with endometriosis then her chance is higher of having it, but even if an identical twin has it, it is not certain that the other will get it too.”
What are the biggest ‘red flag’ symptoms?
“There is no group of symptoms that is diagnostic it’s a case of having sufficient symptoms to consider doing a laparoscopy. As mentioned, the worst symptom is painful periods, but painful intercourse and pain with bowel movements at period time can also be relevant.”
* Up to 10% of women at any time might have some endometriosis if they had a laparoscopy, most of whom will have no symptoms.