One of the major problems with living with endometriosis (and that is a long list of things to choose from), is the inconsistency in effectiveness of medical therapy. Some medications work well, others don’t, some work well in certain people, others don’t, some people experience severe side effects, others don’t, and so on – none of them are perfect and it can be a lot of trial and error before determining the right treatment for the right person. In addition, the symptoms of endo are often quite varied. There is pain (obviously), but there is also fatigue, bowel and bladder symptoms, sexual symptoms and psychological symptoms to name a few. Medical therapy may be able to treat one or two of these, but there is no magic bullet that can treat all endo symptoms, so people naturally look elsewhere for relief.
For this reason many women with endometriosis opt for self-management strategies for their symptoms. If you are someone with endometriosis reading this then chances are you have tried some form of symptom self-management, such as certain exercises, diets, alternative therapies etc. However, many of these self-management strategies also are highly variable in their effectiveness between individuals.
Despite the widespread use of self-management strategies there has been little research into their use and effectiveness in people with endo. One such study, published in 2017, gives a good overview of the current evidence surrounding the rationale and use of management strategies for pain, psychological and sexual symptoms of endometriosis – you can read the free full text of this article by following this link.
For this week’s blogpost though I’m going to be discussing a new paper on the results of self-management in endo. This article gives the results of an online survey of Australian women with endo, who were asked to rate the type and effectiveness of self-management they have used.
To begin with 484 women’s responses were included in the study, of which, 371 (76%) had used some form of self-management in the last 6 months. The graph below shows what types and how popular each self-management strategy was.
We’ll talk about the different methods in a bit, but before that we need to take a look at a second set of results. These were the rating women gave (on a scale of 0-10) on how effective each self-management strategy was at reducing pain.
Another way to measure the effectiveness of a self-management strategy is whether or not it reduces the need for medication. The authors did collect this data, but it isn’t presented in the main body of the article (it’s in the supplementary data). There’s a lot of data there so I’ll focus on the percentage of people who rated each treatment as ‘significantly reducing the medication usage i.e. by 50% or more’.
Now we can make some meaningful interpretation about these strategies. Interestingly, despite cannabis being used by 13% of the participants, they rated it as the most effective form of pain relief, and was rated the highest at significantly reducing other medication use. Similarly, although CBD oil was only used in 3% of those surveyed, it also rated fairly highly on the effectiveness scale and was the second strategy that significantly reduced the need for other medications. According to the authors of this study, the use of cannabis as a therapy for female reproductive disorders can be traced back as far as 2700 BCE China, so the precedent for using it is fairly strong. While some studies have shown that certain chemicals found in cannabis (like CBD, THC and THCV) have pain relieving and anti-inflammatory effects, studies in recreational use (like this one), don’t specify what strain was used and the difference in effects.
Certainly cannabis use isn’t as straight forward as it was a few decades ago: more potent strains, availability and the rise of incredibly harmful ‘synthetic cannabinoids’ make choosing cannabis as management option tricky. Given the illegality of cannabis in most places there is little to no public education as to which forms are best suitable for pain relief, so people will likely look to websites and blogs that give personal advice. If cannabis (or products derived from it) is a legal option where you live it may be something worth considering, but there is still very limited scientific investigation into how it works. There is a free full-text article on the rationale for cannabinoids and endometriosis pain relief at this link if you would like to learn more.
A similar percentage of people used alcohol and herbal medication, yet their effectiveness was far lower down the scale and did not really make any significant impact on needing to take other meds. Heat seemed to be the most consistent in terms of usage and pain relief. Despite how common and effective the application for heat is, there is very little research looking into why it works. Some research suggests that it increases blood flow, or that the activation of heat sensors blocks the activation of pain sensors. There is a downside to both heat and alcohol though - side effects. This study also asked women to rate the occurrence of adverse effects associated with their chosen self-management strategy. The results are shown below
I can attest to the adverse effects of alcohol myself, so these results are none too surprising. I’ve seen many reports advocating for exercise for the self-management of endo pain. This is a double edged sword though, because while exercise therapy is essential for chronic pain recovery (and has been shown to have a positive effect on endo pain), it can also lead to fatigue, symptom flare up and muscle spasms. This study did not differentiate between women who underwent rigorous exercise or moderate/mild exercise, but the authors did point out that a gradual work into exercise needs to be done for people with chronic health conditions - starting with very mild exercise and working your way up.
Although the authors of this study included diet modifications as a self-management strategy, the variability of this answer makes it difficult to judge its value. Many, many diets exist, some that are tailored specifically for women with endo or chronic pain conditions, so their effectiveness is likely going to vary quite considerably too. When talking about diet for endo you must also consider other conditions that the person might have. IBS for example, is very common in women with endo, so are bowel problems in women with endo affecting the digestive system. Therefore individual food triggers and intolerances will play a huge role in which diet option works best.
Because there is no universally effective medical therapy for endometriosis, people with the condition are always going to seek out ways to manage their own symptoms. Endo is a very individual condition, so person’s choices will reflect their own experience of endo and any accompanying conditions. Hopefully research like this helps people to make informed decisions about their self-management options and improves their quality of life.