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Whole30 and endometriosis and adenomyosis


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Hello there -

I'm currently on R1 Day 17 of my first Whole30 (started feb 27). 

What motivated me to post is I've been having intense pain flare ups especially during this current week 3 but also week 2. This is my third day in bed since starting the whole30 and I'm not sure if it's just a detox reaction? Or perhaps just regular endo/adenomyosis progression, as these are such insidious conditions. It's difficult being in chronic pain to begin with and then have it get worse  thoughtout.I've been 100% compliant throughout except my regular tramadol/liver and immune supplements/and limited medical cannabis (approved by my medical team).I've had two surgeries so far and they want to do a hysterectomy next; the whole30 is my attempt to reduce inflammation and oxidative stress to try and help us conceive and avoid a hysterectomy for the time being. 

Is anyone currently doing the whole30 who also has endo etc? What's your experiences been? I'm aware that with autoimmune conditions such as these, it may take up to 3 months to see results, so patience and self discipline is the name of the game. I'm trying to be patient waiting for my tiger blood to kick in, it's hard lol! But how to manage that with escalating pain control?

In addition, as I'm sure it's somehow related but I had the absolute worst cracked and chapped lips from day 5-9 and then it cleared up. Another detox reaction? 

Thanks for reading and I look forward to hearing from others on this same path. 

 

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Detox reactions are generally headaches, some bathrooming issues, feeling sluggish... intense pain from existing conditions and chapped lips is not usually a sign of detox... that said, I don't have your conditions but good for you for trying this before surgery.  I"m glad you mentioned that you're aware that improvements can take a while... not sure where the specific '3 months' comes from but it can take a while as your body heals so be patient, eat to the template, rest and give it time.

I also just wanted to mention that I had to edit your post to remove your swear word... this is a family friendly all ages site :)

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I have endo. Started making diet changes 7 years ago to manage the daily pain and it was successful (in addition to pelvic PT and thyroid management).  Haven't been on pain meds, hormones, or needed surgery since. I started doing Whole30s maybe 4 years ago and found the most success. I'm currently doing a modified one during the last trimester in preparation for delivery of my first child.  Granted, I have a mild case of endo as of my lap in 2009 and I don't have adeno, but there's hope. 

A few things... I can eat compliant foods that make me absolutely miserable. I had food allergy testing done with a functional doc and found I had negative reactions to many whole foods. Oranges, almonds, cranberries, eggs, etc. Doing a Whole30 wasn't enough - I had to cut out even more. You may need to play around with it to see what triggers things for you. 

On another note, I HIGHLY recommend pelvic physical therapy for endo. Our bodies get so wound up and our organs get squeezed and can't function as properly because of it. I found an amazing PPT years ago that helped immensely after my surgery. I could literally feel adhesions pop and release. When ttc last year, I found an amazing massage therapist that does similar work. The relief I feel when I leave her is amazing. If it's something you're interested in, I can give you more info as to what to look for. There are some places that bring you there for a week of intense therapy (Clear Passages) if you're in an area with less options. 

My 2 cents. Good luck! You can do this!

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Hi Karen,

Thanks for your support and sharing some of your story. It's encouraging to hear that diet was able to make a positive difference in managing ongoing pain. It's also encouraging you've found the most success through the Whole30. I've tried other elimination diets in the past, but have so far found the Whole30 the easiest to stick to because of how much structure and support is available. 

I appreciated too your comments on compliant vs. non-compliant foods; I think that's an important point. You're right - everyone is so different and you need to find what works for you individually. I did similar testing with a naturopath two years ago, so this has inspired to go back over that list and see how that will guide the re-introduction phase. However, I'm starting to realize that I'll likely have to stick with the Whole30 beyond the regular 30 days to see any meaningful changes.

Finally, interesting about PPT! I'm working with a physio right now but it's more on pain desensitization, etc and doing acupuncture too. I've never met someone yet who has used PPT and massage for endo though, so I'd love to get more info from you! 

Thanks again!

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6 hours ago, Bulkychameleon said:

Hi Karen,

Thanks for your support and sharing some of your story. It's encouraging to hear that diet was able to make a positive difference in managing ongoing pain. It's also encouraging you've found the most success through the Whole30. I've tried other elimination diets in the past, but have so far found the Whole30 the easiest to stick to because of how much structure and support is available. 

I appreciated too your comments on compliant vs. non-compliant foods; I think that's an important point. You're right - everyone is so different and you need to find what works for you individually. I did similar testing with a naturopath two years ago, so this has inspired to go back over that list and see how that will guide the re-introduction phase. However, I'm starting to realize that I'll likely have to stick with the Whole30 beyond the regular 30 days to see any meaningful changes.

Finally, interesting about PPT! I'm working with a physio right now but it's more on pain desensitization, etc and doing acupuncture too. I've never met someone yet who has used PPT and massage for endo though, so I'd love to get more info from you! 

Thanks again!

I hadn't heard of pelvic PT until someone online mentioned it. The hard part is finding someone that does it. Depending on the state you're in (assuming US), PTs can do it and massage therapists can as well. A few sources to look into: 

Clear Passages - you travel to them for a week and they work you a lot. This is intensive. May or may not be covered by insurance. 

Do a search in your area for pelvic PT.  They'll often advertise working with incontinence, among other things. Some PTs are only trained in soft tissue mobilization and don't have extensive training.  You want more than that. Look for visceral (work with organs) or myofascial release (work with connective tissue).  You may need a referral and a good one will have a long wait list. Well worth it. When I asked for a referral years ago I got it, but was brushed off by my doc that it wouldn't do anything... Needless to say, she was wrong.

John Barnes trains people in myofascial work. His website lists practitioners that you can look up by area. My massage therapist is an expert in the Barnes method. I had cervix pain after a miscarriage and d&c last year. TTC was unsuccessful until she did some work on me. Not only did the pain go away, but I was fertile and conceived within days. Coincidence? Maybe. But maybe not. 

If you need help finding someone, please send me a note. I'm happy to help. I was able to help a friend with vulvodynia find a therapist (she was ttc for a long time) and this seemed to be the missing link for her. There are no guarantees, of course, but one more thing to try. Endo and adeno need to be addressed by multiple angles. 

Oh, and I'm curious if any of the food sensitivities you tested positive for are making your body unhappy now. It'll be a good experiment for you!

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Hi Karen - this is great information! I'll definitely do some searching and see what I can find in my area. It's encouraging to hear how much this has helped you. 

The food sensitivity testing was interesting; a lot of low grade sensitivities with the usual culprits: gluten, dairy, etc. Also some surprising ones: green tea, walnuts, cranberries, etc. This will definitely help me tweak where needed. 

Thanks again!  

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