Endometriosis and diet: Do what you want

This blog post is written with women who have endometriosis only in mind (not those with separate diagnosed conditions such as coeliac disease, etc).

Like many women with endometriosis, I took years to be diagnosed. I don’t wish to go into detail but basically I was very unwell and losing weight quickly.

I was in the fortunate position of being able to afford to consult various health professionals about what may be causing my symptoms and what could be done to improve my health.

Many of these health professionals suggested various diets believing that food intolerance may be causing my symptoms. Even after I was diagnosed with endometriosis many continued to recommend various diets believing it could help with the disease symptoms.

I have tried many different diets* for years at a time (and sometimes in combination). Among others, I was gluten free for over 5 years, salicylate free for almost a year, and FODMAP free for almost three years.

None of these diets made even the smallest difference to my physical symptoms. And yet I persisted. Why would someone not eat bread for that long if they had no benefit from it?!

Even though it didn’t make my physical symptoms better, adhering to these diets made me feel like I was actively working to make myself feel better. It made a (sometimes) helpless situation feel a lot less so.

Also, I never really consciously thought about whether these diets were actually helping my physical symptoms. Surely dietitians and doctors wouldn't have recommended them to me unless they were sure it would help? And then one day (about four months ago) I finally thought about it.

I thought about how when I have been ‘naughty’ and eaten foods that I’m ‘not supposed to’ I don’t always feel sick from it. I thought about how when I’d been strict with myself and not strayed from the diet at all, I often still got very sick.

I thought about how the health professionals who recommended those diets only really suggested them to me. They didn’t prescribed them or tell me I would feel terrible without it or that I’d be a ‘bad patient/person’ if I decided that I didn’t want to follow them (although this was often implied).

So I started eating whatever I wanted. And do you know what happened? Nothing!

I did not feel worse but I also didn’t feel better (at least not physically. Mentally, I feel much better now that I don’t have to ask a waiter a million questions when ordering at a restaurant).

Based on what little understanding I do have of the physiology of endometriosis this outcome did not surprise me. As physiology really isn’t my field I’m reluctant to elaborate on this (sorry!) for fear of giving false information. I’m hoping someone for whom this is their field will publish on it soon and I can then summarise it for you all here on the blog. Fingers crossed!

While the focus of my PhD is on the psychosocial aspect of endometriosis I read widely to ensure I have a broad understanding of the condition and the research that has been conducted on it. A small amount of research has looked at whether diet can help alleviate symptoms of endometriosis. 

The majority of these studies have been poorly conducted. For example, few studies included a ‘endometriosis free’ comparison group to ensure that the diet being tested was something that could specifically help women with endometriosis and many used questionable methods to ‘measure’ women’s symptoms. 

One of the better studies was a review on period pain and diet in women with endometriosis which concluded, “No clear recommendations on what diet to eat or refrain from to reduce the symptoms of endometriosis can be given.”

Stories of how various diets have helped women with endometriosis fill many websites and self-help books. Just because these stories have not yet been supported by scientific evidence does not mean they are false or less worthy. It’s simply means they show a different perspective to that currently being told by Science.

I write this blog post to share my experience and perspective only; not to tell others about how they should or shouldn’t eat.

A part of me wishes I could travel back in time and tell myself to think critically about whether any of the diets were actually helping my symptoms and remind myself that I don’t ‘have’ to be on them. This is my body and I can treat it how I please.

But I can’t and the truth is the experience wasn’t entirely negative; I learnt a lot and now have the useful talent of being able to design a dinner party menu that can accommodate almost every possible food intolerance there is.

May you all have your cake (be it gluten free, sugar free, dairy free, etc) and eat it too!

Kate xx

PS You know what food does have a fair bit of evidence to support its magnificence? Coffee!

PPS I highly recommend checking out this hilarious YouTube series on food intolerance and an intolerant foodie.

*When I say ‘diet’ I am referring to that which is created by health professionals to address food intolerance or to relieve symptoms of an illness. I am not referring to ‘fad diets’ or those for weight loss.

Image via Death to the Stock Photo