What's in a Name
Does endometriosis need to be diagnosed? This may seem like an obvious question, yet there are still a few people, even within the medical community, who believe that a diagnosis is not necessary. The thinking goes that if someone is suspected of having endometriosis and they are given some form of hormonal treatment that they respond well to (like contraceptive pills or GnRH agonists), then there is no point performing further tests or surgery to confirm the diagnosis, because the treatment is working and surgery would only drive up medical costs. I’d like to immediately point out that I do not agree with this stance, I think there are many problematic reasons why it would be deleterious to women with endometriosis and I’m going to spend this blog post outlining those reasons below.
Endometriosis is not a static disease
Were endometriosis a disease that didn’t change over time in the symptoms it presented or the actual physical nature of the lesions themselves and associated problems like adhesions or other comorbid conditions, then treating endo would be a simpler affair. Unfortunately we live in a world where endometriosis can be a complex and ever changing condition, symptoms may get worse, and the disease may advance to a higher stage. Certainly if we look at data on adolescent and adult stages of endometriosis (that I’ve written about previously), we see that younger women have a higher incidence of stage I and stage II disease than adults, while adults have a higher incidence of stage III and IV than young women. This clearly indicates that endometriosis can progress to higher stages over time and the subject of whether or not medical therapy prevents this or slows it down needs much more research.
Additionally, the position of just using medical therapy without diagnosis assumes medical therapy works as effectively, over the long term, on all forms of endometriosis. The disease falls into different substypes depending on location, extent and severity of the disease. A suitably experienced physician would not treat deep infiltrating endometriosis of the bowel in the same manner as peritoneal endometriosis of the pelvic ligaments. Granted, both of those types of endo may have different symptom profiles and responses to medication, but a doctor would not know for certain what type they were dealing with unless further investigation and diagnosis was carried out.
Aside from pain symptoms, one of the major factors impacting women with endometriosis is fertility problems, with 30-50% of women with endometriosis experiencing fertility issues. Many of the medical therapies for endometriosis, in particular the hormonal therapies, also act in a contraceptive manner. Therefore, any woman being treated medically for endometriosis would need to cease medical treatment in order to attempt to conceive. There are two problems with this; firstly, endo symptoms are known to rapidly recur following the cessation of treatment, so whatever symptomatic relief the patient was experiencing during treatment would disappear during the time they were trying to get pregnant.
Secondly, if medical management alone is used then how is endometriosis associated subfertility or infertility supposed to improve? There is evidence that surgery to remove endometriosis improves fertility, both naturally and using assisted reproductive techniques like in vitro fertilisation (IVF). Although scant, there is also evidence to suggest that early surgical intervention for symptomatic early stage endometriosis in young women results in very good fertility outcomes later on. Now, I’m not going to pretend that surgery for endo doesn’t also come with downsides related to fertility. Some studies have found that repeated surgeries for endo (particularly involving the ovary) can result in ovarian damage leading to decreased ovarian reserve and stimulation, and the benefit of surgery on fertility seems to be mostly limited to women with stage I and II disease. Again though, fertility success rate is dependent on the type of surgery used and the type of endometriosis it is trying to treat and the only way any assessment of this can be made is if a diagnosis has already been made.
The impact on mental wellbeing of patients
One of the statements that comes up a lot when I talk to women with endo about their journey to being diagnosed, is the sense of uncertainty and fear before they had a diagnosis of endo. It’s perfectly understandable too; living in pain, sometimes every day without knowing what the cause is would be is a fear and anxiety inducing prospect for anyone. Studies into the impact of diagnosis on women with endometriosis found that delayed diagnosis was a major factor contributing to reduced quality of life and mental health wellbeing. Other studies found “symptomatic women frequently reported that they felt a sense of relief, legitimation (i.e. confirmation that their symptoms were genuine), liberation and empowerment, replacing feeling of fear and self-doubt”.
Suspected endometriosis is not the same as confirmed endometriosis, there is still doubt and fear associated with that uncertainty, particularly if symptoms start to recur. Therefore it is not only about the physical benefits of diagnosis (i.e. knowing the extent and type of disease and being able to plan treatment), but the psychological impact of being validated as a person with a recognised chronic health condition that impacts their everyday life.
Women with endometriosis have been shown to have a far higher incidence of mental health issues such as anxiety and depression, and that effective treatment of their endo symptoms significantly improves their mental wellbeing. Only by diagnosing endometriosis and revealing to someone the cause for their suffering, can the journey towards holistic healing of both mind and body begin.
The impact on awareness, research funding and surgical training
Despite endometriosis being a common condition, named by the British National Health Service as one of the most painful conditions to live with and costing countries billions in health care costs and lost work productivity, it still does not have a profile as high as conditions with comparable health impacts like diabetes and Crohn’s disease.
If rates of endometriosis diagnosis were to drop because women were simply not being referred for surgical diagnosis, what impact do you think this would have on policy makers prioritising endometriosis awareness and funding organisations putting money into endo research? With numbers of confirmed endo cases dramatically reduced, funding for education and research into endometriosis would plummet and raising awareness about endo would also become more difficult than it already is. We would lose so much knowledge and understanding about the disease and leave those with the most difficult to treat forms of endo with little hope.
Another factor to consider is the effect on the quality of surgery that was offered for endometriosis. The consensus among medical professionals is that highly skilled surgeons are needed to offer the most effective pain relief and fertility management of endometriosis related symptoms. If we were to not diagnose and surgically treat women who initially responded to medical therapy, then the need for, and number of, surgical specialists would fall as the number of women referred to surgery would also fall. The knock on effect being that the overall quality of treatment that women who were referred to surgery would be reduced.
In summary then, there needs to be a balanced approach to the treatment of endometriosis, diagnosis should be made as early as possible and the stage, extend and severity of the disease and its symptoms be taken into consideration when choosing the correct management of the woman’s current condition and their future decisions on having a family.