Luckily, I enjoy quinoa and kale...

March 23, 2010 7:38 AM

EndoFilter: Have you followed an Endometriosis Diet? Did radical changes to your diet mitigate your symptoms?

My new doc is pretty sure I have endometriosis (sonogram scheduled to confirm, yadda yadda...) This news was a complete surprise to me, and I feel a powerful need to Do Something. (Away! To teh Intarwebs!) My research has taken me to various sites that recommend (what for me would be) extreme dietary changes to lessen the symptoms of endo -- no caffeine, no meat, no gluten, no dairy, no soy, etc.

Before I break the news to my fellow omnivore spouse that I am now the Special-est Snowflake in Snowflakeland diet-wise, I wanted to see if my fellow Endos of Metafilter could give me a grounded, realistic perspective on which changes really work, which ones don't, and how you live with these restrictions on a daily basis. I know, "Less Pain" is a powerful motivator, but I don't even know how to begin cutting so many things out of my diet at once... If I buy a gluten-free vegan cookbook, am I good to go? (Oh, wait, the soy...) Can I ever eat out again? Does cutting way back on all of these things (but still having the occasional grilled chicken sammich) still help, or is it all/nothing? Can I maybe eat seafood other than just "white fish"?

Rambly questions, I has them.

Also, thank you so much to everyone who posted/contributed to the previous Endo-related questions -- you have no idea how much those helped me in the last few days...

posted by somanyamys to Health & Fitness (13 answers total)

I have endometriosis and this is the first I've ever heard about their being an endo diet. The best success I had was going on the Pill, which changed my world so much for the better that it is not even funny. Has your doctor suggested that, or are you already on the Pill?

That said, I went off the Pill several months ago and have been surprised that my body has been behaving very, very well indeed. For a frame of reference, before going on the Pill, I regularly passed out from the pain (even after pain medication kicked in), had ten-day hemorrhage-like periods, for the entire ten days (ugh), and, at age 21, had a large ovarian cyst that decided to burst and nearly kill me. That was when I got on the Pill.

I've often wondered - anecdotally, not scientifically, of course - whether there is indeed a link between gluten and casein intolerance and endo. As it happens, I was diagnosed with a gluten and casein intolerance eight years ago, and am wondering if my diet has something to do with how well I'm doing off the Pill now. There are confounding variables, however: I'm older and had been on the Pill for 11 years straight. Nonetheless, I am really, really surprised at how regular and non-painful my cycle is now.

There are pre-made gluten-free foods available in stores, you don't necessarily have to cook everything. My favorite gluten-free baking book is "Special Diet Solutions" by Carol Fenster PhD. As the title implies, it also accounts for other food intolerances/allergies. Bob's Red Mill makes some great gluten-free flour mixes.
posted by fraula at 8:41 AM on March 23, 2010

about there being an endo diet. Oops.

Also, have you asked whether you can be tested for a gluten intolerance/allergy/celiac disease? Might be something to look into. If you are celiac/gluten intolerant, you won't be able to have the occasional grilled chicken sammich, unless it's on gluten-free bread.
posted by fraula at 8:52 AM on March 23, 2010

Best answer: The pill didn't help me much -- only in the first few months -- though everyone is different I guess. I started exercising regularly and that has helped a lot. I also cut out food/products that can act like a hormone on the body: dioxins (like chlorinated bleach) and parabens. Some people swear by supplements like evening primrose oil, though I haven't tried it. Check out this site for diet (particularly the Foods to Avoid section), YMMV: http://www.endo-resolved.com/diet.html
posted by bunny hugger at 8:54 AM on March 23, 2010

Best answer: Even if you can just cut back somewhat, there should be improvement in your symptoms. The next thing, if it were me, would be to determine which of the dietary restrictions make the biggest difference and spend most of your energy there. For me, milk is the biggest problem. I tried drinking raw milk for a week and couldn't believe how it turned my cycle into a nightmare.

I've done gluten-free. caffeine-free, sugar-free and vegetarian, but not necessarily at the same time. No lie it is hard. You have to find a few staples to get you through until you get familiar with labels. Brown rice and veggies are your friend. Find a good grocery... Whole Foods etc.... and then talk to people and read labels. There are bread products that fit the criteria, you have to try them. Find the brands you can trust. You'll find your way.

Unfortunately eating out is really hard. There is cheese in everything and the explanation of gluten is way beyond most people.
posted by kgn2507 at 9:20 AM on March 23, 2010

Response by poster: I was on the pill for 13 years, with about an 18 month break in the middle because we thought it would help my migraines. During that break, my cycle was short and my periods were brutal. I was a dummy and never thought that that was a sign of Something Wrong - I just told my GP I wanted to go back on the pill. Now that I'm seeing an actual OBGYN, and am off the pill again, endo was the first thing he said while taking my history. In retrospect, the pill did help immensely, but I pay for it in an uptick in migraines. I might go back on at some point, but right now I'd like to try and go without.

I'm not actively trying to conceive (yet), but we do probably want to have kids in the near-to-mid-term, and I'm getting the sense that the Endo will get worse over time (possibly leading to infertility if I'm not already). Some people seem to think that these extreme dietary changes will slow the process, and I am very willing to give it a shot if it means a) I can avoid surgery(-ies), and b) I can stay off of Lupron, c) I can buy myself some time on the babymaking. If any of that is not true, I want to hear that too.

I have seen endo-resolved.com and other endo blogs and forums, but there seems to be conflicting info... some say cut out all soy, others say miso and tofu are ok. Some say peanuts are TEH EVIL, others make no mention. Some say no animal flesh except white fish, others say just cut out red meat. A lot of "endo recipes" actually contain types of ingredients that they say to avoid. Hence my confusion, and my desire for some real-world perspective.

Obviously I intend to discuss these kinds of things with my doc next time, but this whole thing has been such a shock that I really need to smarten up before I can ask him intelligent questions. Also, I am already seeing an acupuncturist for my migraines, and I intend to discuss potential endo treatment with him as well.

Thanks for the answers so far... more please! :)
posted by somanyamys at 9:56 AM on March 23, 2010

Best answer: First, you should know that there's a good chance that an ultrasound is not going to diagnose - it can rule out fibroids and cysts, and it can detect VERY bad endo, but that's not typical. The only surefire diagnosis is laproscopy. The advantage to that is that if they DO find endo, they can clear it out while they're there.

I had the surgery just over two years ago, and that, in combination with the pill, has now made me have short periods with the kind of pain that can be dealt with by taking a couple of Advil - which is nothing short of a complete 180 from where I was before.

Now, I'm not thrilled about being on the pill, so after the surgery I saw a women's health-focused naturopath briefly to look at other options. She did have me try an elimination diet (no caffeine, no sugar, no dairy, no white flour, only less-fermented types of soy - so miso was fine, and limited amounts of tofu were okay - and various other restrictions). I'm already vegetarian and am almost vegan at home because my partner's vegan, so on those counts it wasn't so bad (but the no sugar was brutal!). However, the interesting thing was that she told me that she could not actually advise me to go off the pill, because while drastically changing my diet COULD help, there was no guarantee, and she didn't want to be responsible for making me have surgery again sooner than necessary.

My surgeon told me that I was probably looking at 5 years between surgeries if I keep taking the pill, and about 1 year between with no pill. However, as I'm sure you've found, the research on endo is painfully sparse, and every case is different, so it's impossible to know. I'm sometimes tempted to go off of the pill and just see what happens, but I obviously don't want to put my body through surgery more often than necessary.

Anyways, all that to say that I would actually recommend surgery (of course, IANAD, IANYD) in terms of getting good results (although I'm in Canada, so YMMV vis-a-vis insurance), and from what I understand, there are no conclusive results on dietary changes. Sorry if some of this is off-topic from your original question; feel free to memail me if you want more info on any of it!
posted by sabotagerabbit at 10:23 AM on March 23, 2010

I have seen endo-resolved.com and other endo blogs and forums, but there seems to be conflicting info... some say cut out all soy, others say miso and tofu are ok. Some say peanuts are TEH EVIL, others make no mention. Some say no animal flesh except white fish, others say just cut out red meat. A lot of "endo recipes" actually contain types of ingredients that they say to avoid. Hence my confusion, and my desire for some real-world perspective.

Step back for a minute and look at what you wrote. Doesn't it smell a little, umm pardon the choice of words, fishy to you? While it's certainly possible that some as yet poorly studied dietary or lifestyle change out there may help your symptoms, (as always) the pleural of anecdote is not data. So you have to ask yourself if you are willing to go down the road of all manner of extreme lifestyle/dietary changes based on the guidance of random anecdotes you read on the internet. Do you really think that will yield you anything other than an occasional placebo effect? It's hard for me to see this as anything other than another case of the road to hell being paved with good intentions.

When you were on the pill were you on continuous OCP's or did your pill have a placebo week? Many if not most women who get migraines on OCP's do so as a result of estrogen withdrawal during the placebo week, and there are multiple approaches to managing that without stopping the pill entirely. A GP may or may not be familiar enough with hormonal therapies to deal with this sort of stuff but your OBGYN should know better.
posted by drpynchon at 10:27 AM on March 23, 2010 [3 favorites]

sabotagerabbit brings up a good point, the ultrasound won't diagnose, only a laparoscopy can do that for certain. (I had one for that burst cyst, which is when they cleaned out my system. However, my GP had often said I had all the signs of endo before that, what with the pain and etc.)

I'd second what drpynchon points out too, after your clarification... sounds quite iffy.

And to balance out the anecdote given in my first post with some more anecdote, I just returned from my GP (like, ten minutes ago) and... strong suspicion of, you got it, an ovarian cyst. I've had pain for a couple weeks and thought it was something else (been stressed lately), but nope, it's right where my left ovary sits. There ya go, a few months off the Pill and for the first time ever since going on it 11 years ago, I've probably got Yet Another Cyst. (Ultrasound set for Monday.) So about the only thing I can say for certain is that if you have a gluten intolerance, going off gluten helps :o) Same for lactose, peanuts, soy... but it's the intolerance, not necessarily the endo. Ever wonder how many of those people giving their stories actually just happen to have food intolerances and endo? That's what seems most likely.
posted by fraula at 11:29 AM on March 23, 2010

I don't know that I have endometriosis (because I haven't had the laproscopy) but I do have PCOS & interstitial cystitis, so I am somewhat familiar with things going wrong Down There. I highly recommend a book called Heal Pelvic Pain by Amy Stein. She's a physical therapist, and I saw this book recommended on the IC Network forums. I have to admit that I haven't followed the recommendations of the book exactly - I usually spend about 10 minutes stretching as opposed to 30 - but even so, I have found relief from the exercises outlined in this book. Maybe it will be helpful for you, also.

Also, to chime in on the OCP issue - one of my close friends does have endometriosis, and she has found that taking continuous OCP - specifically, a tri-phasic pill - has been very helpful for her.
posted by rikhei at 12:57 PM on March 23, 2010

Response by poster: To clarify: I am not interested in going back on the pill right now.

drpynchon: Step back for a minute and look at what you wrote. Doesn't it smell a little, umm pardon the choice of words, fishy to you?

That would be why I'm asking the question. In the absence of any other data (or in the presence of conflicting data), I don't think it's so horribly unreasonable to check with other women to find out what did/didn't work for them before deciding for myself how to proceed.
posted by somanyamys at 1:29 PM on March 23, 2010

That would be why I'm asking the question. In the absence of any other data (or in the presence of conflicting data), I don't think it's so horribly unreasonable to check with other women to find out what did/didn't work for them before deciding for myself how to proceed.

While it's not horribly unreasonable, I do think that that is not an entirely rational course of action. Survey enough people and you will get a list of potential dietary changes that might cover a fairly large subset of all possible changes, not to mention all manner of supplements to your diet that some might suggest. As you've done your own surfing, you already know that. Beyond the classic fallacy of assuming causation in the setting of temporal correlation, this is akin to jumping into a haystack to find a needle that may or may not be there. For what ailments would you draw the line on this sort of thinking? What makes your symptoms any more amenable to dietary changes than say someone who has headaches from brain cancer or a cough due to pneumonia?

Again, it's your haystack. But you did say: "If any of that is not true, I want to hear that too." Noone can disprove a negative. So here is my personal anecdote for you: as a physician trained in internal medicine who has seen a fair number of patients with endometriosis, I have yet to hear one swear by any particular dietary changes that alleviated their symptoms. The best supported dietary modification to date for symptoms of dysmenorrhea is probably fish oil. But it hasn't done a lick to help a multitude of women I've known with such symptoms.
posted by drpynchon at 4:24 PM on March 23, 2010

Best answer: I hadn't heard about a specific "endo-diet" but I was directed by my doctor to make changes to reduce the reoccurrence rate. It seemed to have helped, but it's not as if I had a control. I do, however, feel better in general after the changes I made (less meat to avoid naturally occurring hormones, more soy, adding fish oil).
posted by _paegan_ at 9:43 PM on March 23, 2010

Late to the party, but .... longtime endo sufferer here. There is no scientific proof that any diet change can affect endometriosis symptoms. When I asked my doctor about it, he shook his head and said that the body cannot produce any "extra" estrogen, from food or anything else. Reducing the estrogen output using hormone medications such as birth control pills, Lupron or Depo Provera can slow estrogen output while in use, but nothing makes more estrogen, period (ha). Nor can you reduce the estrogen production in your body by any means other than medication.

So, go ahead and change your diet if you like, because it certainly won't hurt, and they're all healthy food choices. Your overall health will improve, but any change in endo symptoms will be purely coincidental.
posted by Koko at 5:59 PM on May 4, 2010