Diet for endometriosis?

[GingerGirl2258]

I recently had a laparoscopy for my endometriosis, and I'm incredibly lucky that they were able to remove all of the lesions and significantly reduce the scar tissue in my abdomen. After 9 years of pain, with the last 2 years being constant pain and cramping (every day, 24/7), I am now pain free! I know that it's highly likely that my endometriosis will come back, and even my specialist said it was quite likely to come back sooner than later. I'm working with her to try to slow it's growth (and hopefully prevent it from coming back altogether, but at least slow it), so I'm now on hormonal birth control pills, as well as doing some light hormone therapy.

I've heard that there are certain foods that can worsen endometriosis, or that can help with endometriosis. I feel like it does make sense that our diet could have an affect on our health. While looking online, I've found quite a few "endometriosis diets", but they all seem to be different, while many even directly conflict with others. Really the only thing I could find that everyone seems to agree on is that you should stay away from caffeine (which I've completely cut out of my diet). I'm willing to do just about anything to keep this pain at bay for as long as possible, but I honestly just don't know where to begin.

I do have a consultation with a dietitian in a couple weeks, but in the meantime was wondering if anyone has had any experience or luck with any specific diet. Anything that you've cut out of your diet that you feel like might have helped, or something you added?

Thank you in advance for your help!

[Hidden]

hi GingerGirl2258,

It's inflammatory foods, that when they are absorbed into your bloodstream irritate the endo.

Here's the Fodmap diet for IBS, but you can pick and exclude the ones that affect you.

bbcgoodfood.com/howto/guide...

The general list is gluten, dairy, sugar, caffeine, alcohol and red meat. You can probably find a balance that means you can exclude/include as you go.

There's a post on here called "Diet and immune system boosters" which has more info.

Some foods like green tea, ginger, tumeric, cranberry, help!

[Hidden]

I've cut out gluten and reduced dairy and I feel that this has helped me x

[Loulou24]

I found that gluten and caffeine are my triggers that cause bloating and the most pain but meat is ok for me. People are different so I would try one thing at a time. Hope this helps x

[endo180909]

What birth control pills are you on?

[GingerGirl2258 in reply to endo180909]

Alyacen 1/35. I take them continuously, skipping the sugar pills.

[endo180909 in reply to GingerGirl2258]

Has it helped?

[GingerGirl2258 in reply to endo180909]

It stops me from having my unbearable periods, so yes. Though it also requires me to take anti depressants (all birth controls do). At this point my pain is pretty minimal since my surgery, but I'm worried about it coming back since endo has such a high recurrence rate.

[endo180909 in reply to GingerGirl2258]

When did you have your surgery?

[GingerGirl2258 in reply to endo180909]

April of this year.

[endo180909 in reply to GingerGirl2258]

have you had any pain since your surgery?

[GingerGirl2258 in reply to endo180909]

My daily, constant pain is gone, but my pain with my period is still severe (though not as severe as it was before the surgery). That's part of why I'm skipping the sugar pills.

[endo180909 in reply to GingerGirl2258]

so by skipping the sugar pills, do you have no/reduced pain?

[GingerGirl2258 in reply to endo180909]

Yes, much reduced. I'll have a period force it's way through every few months, but it's definitely reduced by a lot.

[endo180909 in reply to GingerGirl2258]

Where did they remove lesions of endometriosis from?

Ive got to have surgery on the 22nd december. Did you have to stay in hospital for a long time?

I dont know what to take to try and keep it at bay but I know that I dont want to keep having surgery

[GingerGirl2258 in reply to endo180909]

Mostly the outside of my uterus with one on my bladder. I also had some scar tissue that was removed adhering to my abdominal wall.

My surgery was about 2 1/2 hours, and I stayed in the hospital most of the day, but didn't stay overnight. They just kept me until I was able to stand up, drink, and pee on my own with minimal help, which took a few hours.

I was in constant 24/7 pain before my surgery, and honestly the pain I felt from the surgery itself was actually less than what I was used to. You'll be sore for sure, but it's honestly not that bad (in my experience at least).

As for what to take, obviously I'm not 100% sure about what foods to avoid, but I know my surgeon / endo specialist told me that the right birth control can help to slow the growth of endometriosis. Basically you want to avoid estrogen as much as possible since estrogen grows endo. I completely cut out caffeine before my surgery and definitely noticed a difference, and now I've completely cut out soy and noticed some difference with that, too. I've reduced my meat and dairy intake, too.

I'd recommend talking to your doctor about a game plan to hopefully slow the regrowth as much as possible.

[Ecb20201298 in reply to GingerGirl2258]

I did try talking to my doctor but got no sense it seemed like she was in a rush and answered some questions but thinking about her answers had led to more questions, I have googled natural remedies for endometriosis and it comes up with aromatherapy oils and supplements

I have also googled foods and it came up with fruit and veg and avoid dairy red meat non organic chicken etc etc there’s a few books on amazon if you type in endometriosis so I think I may buy them

I really don’t want to keep having surgery so I’m going to start changing things now

Have you ever heard/been on of cerazette/cerelle?

I have been prescribed it but I’m scared of taking it 🤔

[GingerGirl2258 in reply to Ecb20201298]

Natural remedies, at least in my experience, don't work to relieve the pain, but it doesn't hurt to try them to help slow the regrowth!

As for foods, I've since been to a nutritionist and have spoken to my specialist / surgeon and have decided that caffeine and soy are definitely good to cut out completely. Dairy, meat, and gluten are a bit more of a person - to - person thing. Gluten intolerance can certainly add to Endometriosis pain and other autoimmune issues, so it might be good to cut out gluten and see if it makes a difference. If you do have a gluten intolerance, you'll notice a difference in how you feel when you cut it out. If you notice no difference, it probably means that you don't have a gluten intolerance and you're probably fine still eating it. As for dairy and meat, I've found that cutting down, but not completely out, has worked well for me. I've basically cut out milk in all of my drinks, cut out butter when I cook, and only rarely have cheese in my foods. I also have also done my best to only buy dairy and meat that is organic and good quality. Obviously I'm not sure if it will have any long term affects yet, since I'm not even a year after my surgery yet. Hopefully it will! The caffeine and soy have definitely made me feel better overall, though, so even just for that I think those are good to cut out.

It might be good to call around to nutritionists in your area and see if they have any experience with endometriosis diets. That's what I ended up doing, and we were able to work with my doctor to create a diet that worked for my lifestyle and for my endo.

As for the pill, I've never taken it specifically, but I've heard of it and have had a friend that has taken it and really liked it. I've personally been on the depo provera shot, which if I remember correctly doesn't have any estrogen and is similar to that pill. It didn't work for me personally, but it wasn't the worst thing in the world. I tried it for about a year and then switched to what I'm on now. It doesn't seem to have much different side effects than a usual estrogen + progesterone pill, but the fact that it doesn't have estrogen is definitely a good thing for your endometriosis. The only thing that I've experienced with the depo and with a pill that had very, very low estrogen (so similar, but not the same, as what you've been prescribed) was I was more likely to have breakthrough bleeding, but we fixed that up by taking an estrogen pill for a week to help level out my hormones. After that I was fine. Of course everyone is different. Try it for 3 - 4 months and if you have issues still after that trial period, call your doctor and see if they have a recommendation for another pill to try. I wouldn't be nervous to take that specific pill, just try it and see if it works for you, it might be wonderful!

Good luck with your surgery! I really do hope it helps, and that you're able to slow or completely stop the regrowth so you don't have to do the surgery again!