Oh, the pain!

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Essencerose3
Essencerose3 Posts: 9 Member
It's been a long time since any posts have been made here, but I'm hoping people are still around.

A touch of back story, in short form: Diagnosed with endometriosis and PCOS in 2011. Had surgery, helped with the pain for almost a year, symptoms slowly started to come back. Fast forward: It's 2015 and the pain and symptoms are worse than ever. I know the endo has come back worse than before based on the extreme hormone fluctuations and pain, plus changes in my cycle that even the Mirena no longer has much effect on.

I've decided that I do NOT want another surgery! I want to handle this naturally. I've done research upon research upon research and I've finally settled on what is known as an "anti-inflammatory" diet (diet meaning lifestyle change, not short term thing). It basically consists of eating clean and staying away from inflammatory foods (anything packaged/processed, excess dairy, etc).

The pain is the worst part... I'm ready to get this under control, and I think that managing naturally is the only life-long way to live with it. I don't want to be on medication for the rest of my life.

My question .... has anyone else managed this? If so, HOW (specifics such as foods to avoid, types of exercise you do, etc would be really helpful)? What difference has it made? What are the "down sides" of it? Thanks in advance.

Replies

  • erinichristine
    erinichristine Posts: 1 Member
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    Hi! How's the anti-inflammatory diet going?

    I've changed my eating habits since my initial hospitalization with endo. It's helped some, but not completely. I'm off my meds now, and have been for a year. I'm still pretty bloated every day (even with a changed diet) and consistently uncomfortable -- though, as is often the case with conditions like ours, you sort of get used to the "new normal."

    As far as my diet: I limit dairy to cheese and occasional ice cream. Unless it's chocolate, I only do decaf or caffeine-free. I try to refrain from processed or fried. And outside of it's fermented form, I don't do soy. (Almond milk FTW.) And unintentionally, I rarely drink alcohol. (No beer, as hops makes me feel sick.)

    I tried going low gluten, no caffeine, no dairy, no eggs, no soy, no alcohol... and basically I had a panic attack because I felt like I couldn't have anything. (I was also traveling at the time, which is not a great time to make changes like this.) The idea of trying that again doesn't really appeal to me. For me, it begins to associate more guilt with food when I'm that restrictive.

    Mostly now I'm trying to find balance. Increasing my fruits and veggies, being stable with proteins, and reducing sugars and fats. I'm also trying to get much better at drinking water, which has its own challenges since having a full bladder presses up against the uterus causing more pain.

    Anyway. Hope you're having more good days than not, and that you find a nutritional plan that works for you!
  • SalishSea
    SalishSea Posts: 373 Member
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    Hello. I was plagued with debilitating endo pain from the time I was 16 years old to 40 years old. I could go on and on about my struggle with endo. I am telling everyone I know, endo can be helped. The key is SURGERY BY SOMEONE WHO KNOWS ENDO. Almost any surgeon will tell you they can remove endo. But endo is a sneaky little devil. It really can only be fully removed by a surgeon who specializes in endo removal. When I had my surgery 6 years ago there were only 10 truly qualified endo surgeons in America. The surgery was extensive. She went everywhere in my body. Retroperitoneal, cul-de-sac, and I mean everywhere. Even after that surgery by one of the world's top endo surgeons, I had pain return in one year. I went back to her and she said lets do it again. From that second surgery on I have had NO PAIN. I am telling you, IF YOU STILL HAVE ENDO PAIN AFTER SURGERY IT WAS NOT ALL REMOVED. Go back, see another surgeon, do not give up. IT MUST BE SURGICALLY REMOVED.

    Special diets will help, mayan abdominal massage will help, ibuprofen will help. The only CURE IS TOTAL SURGICAL REMOVAL. Do not give up. Have further surgery. It is the only way. Honestly. Please feel free to contact me by MFP message. I can discuss this with anyone if they would like.

    Life without endo pain is amazing. And possible.