EP.365/ Study Spotlight: Dietary Modification and Supplement Use For Endometriosis Pain

Podcast

3 Oct

Today we’re starting a new series and that’s looking into a major new endometriosis study, and doing a deep dive into the dietary changes and supplements it analysed and individually investigating each of them, so that we have a broader understanding of each of these tools.

I won’t necessarily be doing one episode on the series every week, as there are many components of the study we’ll be looking at, so I don’t want to bore you guys with the same topic over and over, but expect us to dip in and out of this series over the next few months.

Now, the study in question is: Dietary Modification and Supplement Use For Endometriosis Pain

The study was a survey study, with 2858 participants, out of which 2388 had endometriosis. It is the largest international survey study we have to date, which is one of the reasons why it’s such a big deal.

Overall, the study found:

The majority of patients reported pelvic pain and abdominal bloating, with 2313 (96.9%) experiencing pelvic pain and 2177 experiencing bloating (91.2%)
2001 participants (83.8%) had tried 1 or more diets, out of that number, 1339 (66.9%) felt that these dietary changes had improved their pain
And those who tried dietary changes and reported pain improvement had lower pain scores than the who did not
1404 had tried supplements (58.8%), with 609 (43.4%) reporting pain improvement with these options
And again, those who tried supplements and reported pain improvement had lower pain scores than those who did not

We’re going to get into the individual findings in the series, but here are some of the top lines, starting with dietary modifications. Before I continue, I will say that whilst some of the percentages are exactly quoted in the study, the others are based on a graph and it’s hard to tell the exact percent, but I would say that my estimation if incorrect, will only be different by 1-3%. I’ve linked to the study and the graph so you can look yourself, and I will say ‘roughly’ on the ones I am estimating from the graph:

53% experienced a reduction in pain with reducing alcohol intake
45% experienced a reduction in pain with going gluten free
45% experienced a reduction in pain with going dairy free
43% experienced a reduction in pain with reducing caffeine intake
Roughly 42% experienced a reduction in pain with avoiding processed sugar
Roughly 38% experienced a reduction in pain with no processed food
Roughly 37% experienced a reduction in pain with no soy
Roughly 34% experienced a reduction in pain with no onions or garlic
Roughly 34% experienced a reduction in pain with the low FODMAP diet
Roughly 32% experienced a reduction in pain with no red meat
Roughly 32% experienced a reduction in pain with a vegan diet
Roughly 31% experienced a reduction in pain with a whole food diet
Roughly 28% experienced a reduction in pain with a Mediterranean diet

Now, there are other dietary changes listed but they come in at under 25%, so I wanted to focus on the ones that had greater impact and on those which have other studies on endo that we can explore together in future episodes.

Now let’s look at the supplement findings:

Roughly 33% experienced a reduction in pain with magnesium
Roughly 33% experienced a reduction in pain with serrapeptase
Roughly 26% experienced a reduction in pain with peppermint
Roughly 24% experienced a reduction in pain with turmeric
Roughly 23% experienced a reduction in pain with curcumin
Roughly 22% experienced a reduction in pain with ginger
Roughly 19% experienced a reduction in pain with probiotics
Roughly 18% experienced a reduction in pain with prebiotics
Roughly 17% experienced a reduction in pain with fibre
Roughly 16% experienced a reduction in pain with omega 3
Roughly 16% experienced a reduction in pain with pycnogenol
Roughly 15% experienced a reduction in pain with vit D
Roughly 15% experienced a reduction in pain with vit B6

Now again, there were more supplements studied but they fall below 15%, so I’ve decided to focus on the ones above that line. You can have a look at the graph yourself, I’ve linked to it in the show notes.

So, these are some really interesting and exciting statistics, but what are the limitations of the study?

Firstly, the authors of the study acknowledge that there could be a possible selection bias. This means that it’s possible that the population studied in this survey, are not representative of the larger population of people with endometriosis, because it could have attracted participants who already had an interest in dietary changes for endometriosis.

Another limitation is the nature of the study itself. A survey study is considered an observational study, and observational studies rely on participants recalling, in this context, what they tried and whether it helped them or not. There is a chance that people may not remember these details clearly.

There is also no controlled measurements for comparison and no parameters - for example, one person may have gone entirely gluten free, another may have just reduced gluten, one person may have taken a supplement for one week and one may have taken the same supplement for three months. One may have taken a high dose of a supplement, and one may have taken a low dose, and so on.

Additionally, in a randomized placebo controlled trial the participants would not know if they’re taking a real supplement or a placebo. This is the gold standard of studies, and the good news is, there are randomized placebo controlled trial studies on supplements for endo, some of which we’ll be covering in this series. This type of study allows us to see whether patients are actually responding to the supplement itself, or are just experiencing improvements because of the placebo effect. For those who aren’t aware, the placebo effect is a phenomenon where people experience improvements from something because of their own positive beliefs and expectations of feeling better from that drug/supplement/diet, etc. So, it’s possible that some of the participants who for example, tried serrapeptase, may have experienced a reduction in pain because they expected to.

Despite the limitations, I think this survey study is really helpful, because we’re relying on real people with endo, not just experiments in the lab, to tell us how they feel - and for one of the first times, we have thousands of patients sharing their experience of diet and supplements changes, not just a select few in a small study.

Something we have come up against historically with endo management and endo in general is patients not being believed. Society and medical professionals not believing their pain, and yet equally, not believing what helps or what doesn’t help them.

For example, a patient may report that’s something helped them, but will be met with dismissal by a doctor because there isn’t any evidence or enough evidence that the method they tried helps improve endo symptoms. Ironically, this is still true even with methods that are fairly well studied for endometriosis, like NAC, and I suppose that would be due to lack of awareness on the doctor’s side and also a bias of the doctor to dismiss other methods outside of conventional treatments for endo.

However, just because there isn’t research or enough research on a method like a supplement or a nutritional change, doesn’t mean it doesn’t work - it just means there’s not enough research yet. And I think that’s a really dangerous trap a lot of people fall into and believe, they hear doctors say “oh there’s no research on XYZ” so they are persuaded not to try something, and yet, that method could have been the thing that actually helped them to reduce their need for pain killers, or frequent sick leave.

And I have seen this happen time and time again. Endo is under researched, it just is, and getting funding for dietary changes, lifestyle changes or supplements is even harder, so of course we don’t have enough research on these - but that doesn’t mean the research that we have to date is all bad, or can’t be learnt from, or doesn’t give us potential treatment options to explore.

Providing something is done safely, and with guidance when needed, an endo patient should have the right to explore dietary, lifestyle and supplement changes in order to experience relief and an improvement in quality of life, if they want to. To be told that nothing else will help them other than hormonal treatments, pain medications and surgery, is vastly limiting someone's ability to feel better with endo, and is a disservice to the endo community.

Does that mean we all should go gluten free? No, but it does mean that we should have the option to explore it safely and with guidance, if we’re interested in trying it. Especially without being laughed at, dismissed or belittled, as many of us are, when we decide to try alternative methods to manage endo, outside of the usual conventional treatments.

My personal stance is that I will believe people over data. What I mean by that is if a client tells me something helped them, I will believe them and we will explore it further together. I will not shut them down because there’s no research, or not enough research. I will choose to hear what they’re sharing with me, believe they know their body and help them to investigate why this method may have helped them, and what its telling us about their root causes and what else they might respond well to. For example, a client who experiences improvements in pain with peppermint and probiotics, or the low FODMAP diet, may be experiencing improvements because a root cause of their pain and inflammation is gut problems. A person who experiences pain improvements with removing gluten, may need to be tested for coeliac disease, non-coeliac gluten sensitivity or a wheat allergy. A person who responds to pycnogenol and curcumin, or the Med diet, may have high levels of oxidative stress.

To dismiss someone’s experience, is to ignore what their body is communicating to us, and robs them of potential improvement in symptoms.

So, yes, there are limitations to this study, but for the first time, researchers, charities, specialists are finally paying attention to what individual endo patients have been trying to share with their doctors for a long time. This large scale study is being taken seriously by the endometriosis space, and it opens up avenues for more research into areas like diet and supplements, with studies such as randomized placebo controlled trials. So, I think this study is something to be celebrated.

Now, of course, as I shared earlier, there are limitations, and so that’s why in this series, I am going to be looking at each method and analysing it further. For example, let’s look at gluten - I will share with you if there are any other studies on gluten and endo, and why changes to gluten intake may affect endo, and what I have seen with my clients, and so on.

Now, finally, I do also want to acknowledge some of the concerns that the endo community have about this study.

Whilst some are celebrating this research, some of the other feedback I’ve heard from my audience is a fear of victim blaming. They’re concerned that because this data has peaked the interest of specialists and researchers, that now, if they don’t cut down on alcohol or gluten or caffeine, they’ll be seen as not trying hard enough to manage their endo, that their pain is their fault. They’re concerned that family members and colleagues will ask them if they’ve tried cutting out this or that.

A retort to share in these specific cases, is that based on this survey study alone, we can see that dietary changes and supplements didn’t help everyone who tried them. Now, that might be because they didn’t cut out something for very long, or maybe they cut out gluten but were drinking a lot of alcohol and that was actually increasing their pain as well, so they didn’t see improvements - so there are definitely variables to consider here. But, there is also the possibility that for those who tried removing gluten and didn’t feel any improvements, that gluten is just not the issue for them, and it’s not affecting their inflammation levels or gut microbiome like it does in others.

And I will say based on my work with clients, it takes a very tailored approach to identify what helps each individual. Not everyone will respond to the same changes, because we all have different biology, so our approach to managing endo needs to be individualised.

So, going back to that concern that a colleague, for example, believes you should try removing let’s say dairy, you could say that you tried it and it didn't help, and that the study also found that around 50% of those who tried removing dairy, didn’t experience improvements.

Now another concern I’ve heard in my audience is that endo patients already feel so unwell and their quality of life is already so poor, that they feel totally overwhelmed by having to now consider dietary changes or takings supplements, or that having to remove certain food groups, for example, takes away some of the joy they do have.

And these are absolutely legitimate concerns. And I think if you’re one of the people listening who experiences these concerns, I would say to you, firstly, you don’t have to try any of these. These are all options and choices, and you are well within your right to focus on conventional methods like pain killers and hormonal therapies. This is your endo management journey, and you get to choose what goes into your toolkit.

However, if you are interested in making few changes, you firstly, don’t need to start with all of them. You don’t have to cut everything out at the same time, and you may find it only takes one small thing to see improvements, and you may well not need to go entirely cold turkey on a food group to reap rewards. For example, you might find that going from 5 drinks a week to 2 drinks a week is enough to improve your pain levels. You might find that reducing your gluten intake from daily to a couple of times a week is enough to improve your bloating and abdominal pain. You might find that just one of these supplements is enough for you to not have to call in sick on your period. It doesn’t have to take every change, it may only take one, or a small handful of changes combined, over time, with support, to see a difference.

Now, with that being said, I do recommend that you undertake changes with the guidance of a doctor or a practitioner, especially if you’re looking to make nutritional changes. This is to ensure that you make changes safely and don’t miss out on vital nutrients, and that you don’t run the risk of over restriction and triggering disordered eating behaviours. But it’s also to ensure that if you remove a food, that you do so strategically, so we can actually measure whether that change specifically helps you, and the best way to do this is with an evidenced-based elimination diet.

Now, if you can’t afford to work directly with a practitioner, I recommend you at least follow a book and seek guidance from your doctor. In terms of book recommendations for dietary changes, if the bloating is your biggest problem, I would say read Dr Megan Rossi’s Eat Yourself Healthy. If it’s pain you’re struggling with the most, I would recommend reading Dr Jessica Drummond’s book Outsmart Endo.

In terms of supplements, the brand and dose really matters with endo, so I don’t recommend you just pick anything up and start taking it, because often supplements are just too low a dose to move the needle. And the good news is, many of the supplements explored in this study, and others not mentioned, have studied, therapeutic doses both for endometriosis, period pain and chronic pain in general. So, stay tuned for this series to learn about them, and then check with your doctor to ensure they’re safe for you, as it’s important to note that some have interactions with certain medications, for example.

Now of course, this kind of work is exactly what I do in my endo coaching, and I offer a six month and a 12 month coaching programme, but if that’s out of your budget, I also offer single coaching sessions and mini-coaching packages that get you set up with the right dietary changes and supplements specifically for you. So, if you’re interested in learning about those, the links to those are in the show notes. I only have two spaces available at present for the longer term coaching, so if this is something you’re interest in, I do recommend you apply soon as September and October are the months I get the most enquires - I don’t know, maybe it’s some kind of back to school vibe!

Okay, so now we have a base understanding of this study, moving forward we’ll start looking into each management strategy individually. I can’t wait to get started and to share this all with you!

Show Notes:

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2831953

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Single sessions and mini coaching packages

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