If you've just been diagnosed with endometriosis or suspect you may have the disease, it's important to know exactly how it's affecting your body. For those who are unfamiliar, "endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes," according to the NHS. Over time, this can lead to pain, heavy periods, and many other symptoms. There is currently no cure for the condition, although there are many treatments that can help to relieve symptoms, including birth control, laparoscopy (keyhole surgery), and hormone therapy.
When discussing endometriosis, there are specific types and stages of the disease that if you're able to identify can help to determine what course of action can be taken in terms of treatment. Because — particularly when it comes to women's health — knowledge is power. That's why we spoke to two top gynaecologists on exactly what the types and stages of endometriosis are, so that you can better understand what's happening to your (or a friend or loved one's) body.
It's no secret that endometriosis, which affects on average 1 in 10 women in the UK, is an underfunded disease. It's worth noting that, for this reason, when discussing endometriosis, there are a lot of uncertainties and unanswered questions. This includes the information currently available on both the types of endometriosis and the varying degrees of the disease — there are plenty of gray areas and "in betweens". Regardless of this, it's still important to understand what information is out there.
The Stages of Endometriosis
When it comes to the severity of endometriosis, it's often broken down into four main stages: minimal, mild, moderate, or severe. These are the commonly used stages established by the Revised American Society for Reproductive medicine (r-ASRM): Classification For Endometriosis, which aims to break down the disease into categories, explains Mr Matthew Erritty, consultant obstetrician and gynaecologist at Ashford and St. Peter's Hospitals. He notes that this classification has been criticised by surgeons and patients as there is "little correlation with symptoms and an overall lack of clinical information." However, it is still used as a wide indicator of severity and also signifies steps that may subsequently need to be taken.
According to the r-ASRM, the severity of endometriosis can be broken down using a point-based system, which takes into account the four main stages, including adhesions (which are bands of scar tissue that can — if severe enough — bind two organs together) and the size of the endometriosis.
The Types of Endometriosis
Three main types of endometriosis have been established: "Superficial endometriosis, which is mild endometriosis overlying the peritoneal surfaces (or, in layman's terms, the lining of the abdominal cavity); ovarian endometriosis, which leads to formation of ovarian endometriomas (chocolate cysts); and deep infiltrating endometriosis," explains Mr Narendra Pisal, consultant gynaecologist at London Gynaecology. "Deep infiltrating endometriosis can involve the uterosacral ligaments (these lie behind the uterus and can sometimes be felt at the top of the vagina), the space between the rectum and the vagina (rectovaginal septum), or other organs such as the bladder, bowel, or ureter." Additionally, Erritty notes that there is a huge range in severity that isn't necessarily recognised within the types listed.
The Types and Stages of Endometriosis in Relation to Treatments
When it comes to treatment options for endometriosis, understanding the types and stages of the disease are important for determining the course of action. Both superficial and ovarian endometriosis can be treated by general gynaecologists with expertise in keyhole surgery. Deep, infiltrating endometriosis needs further assessment, often through "an MRI scan and management involving a multidisciplinary team of surgeons and specialist nurses in specialised endometriosis centres," Erritty explains.
The most important aspect when it comes to the severity of the condition is a "detailed description of the location of the disease and depth to which organs are affected," Erritty says. "It is crucial that a woman understands where the disease is located and the different options for treatment, including the potential complexities of surgical treatment. Women with severe endometriosis should be referred to a dedicated Endometriosis Centre," he says.
This is something Professor Tim Child, who is a consultant gynaecologist and subspecialist in reproductive medicine and surgery at Oxford University Hospitals, also advises. "There are national endometriosis centres now that have to show they've got a certain skill level of surgery, so patients can always be asked to be referred to an endometriosis centre."