How I Manage My Endometriosis Symptoms

Endometriosis Excision Surgery

For my body, I do not believe this protocol would have made anywhere near the difference it has without expert excision surgery first (not the laparoscopy with my regular gynecologist, the excision with my specialist who treats endometriosis full time).

My endometriosis had fused every organ from my rectum to my ribcage together. I was not managing a difficult condition, I was fighting for my life. Excision gave my body a fighting chance. Everything on this list is what I do to protect that chance. For a list of endometriosis specialists in the United States, see the "Find Care" page of this website. To learn how to vet your surgeon and ask great questions, see the "Resources" page.

Hormones and Estrogen Metabolism

Hormones are the area of my protocol I am still learning the most about, and honestly the most complex. What I know is that my symptoms follow my cycle in ways that took me years to start mapping. My acne would flare on a schedule I eventually learned to predict. My breasts were so painful during my luteal phase that I stopped sleeping on my stomach (probably better for preventing wrinkles, anyways). My hair was thinning. My cycles were unpredictable, anywhere from 34 to 45 days. Ovulation knocked me flat. There were points in my cycle where my sense of smell became so heightened that I had to leave rooms. And I had this intense, gripping pain in my uterus during my luteal phase that I now know is connected to adenomyosis, but for a long time I had no name for it and no one who could explain it.

The DUTCH test and blood panel I got with my functional doctor gave me more clarity than anything else had. It revealed a methylation deficit, an androgen conversion issue, a cortisol pattern that explained my energy crashes, and a confirmed Vitamin D deficiency. None of that showed up in a standard blood panel. I am still connecting dots, and I expect this section of my protocol to keep evolving.

Histamine and Immune Response

This one surprised me more than almost anything else. I had developed what felt like new food allergies out of nowhere, random itching with no rash, swollen lymph nodes that came and went, full body inflammation that would spike and then ease off. I did not connect any of it to histamine until I started going deeper into how the immune system behaves in chronic inflammation.

When your body is in a constant state of low-grade immune response, it produces more histamine than it can break down. The enzyme responsible for clearing it, called DAO, gets overwhelmed. So foods that are perfectly fine for most people, things like avocado, bananas, leftover meat, or fermented foods, can send me into a flare. My environment matters too. Scented products, fragrances, and synthetic chemicals all trigger a response my body cannot handle the way it used to.

Gut and Bowel

If I had to pick the system that caused me the most daily suffering before I figured it out, it would be this one. Chronic constipation that left me feeling like I could never fully empty, a lower belly that stuck out dramatically no matter what I ate, bloating after doing almost anything, a tugging sensation in random parts of my abdomen, that golf-ball feeling to the side of my butthole. Intestinal pain that moved with gas and only relieved after passing it. Diarrhea at ovulation. The tearing feeling I came to dread when pooping. Nausea.

I eventually understood that much of this was connected to adhesions from endometriosis pulling on my bowel, combined with a pelvic floor that had been clenching in response to pain for so long it had forgotten how to let go. Pain signals the body to protect itself, and the body protects itself by bracing. Do that for years and the bracing stops being a response and starts being the default. A clenched pelvic floor cannot move waste through properly, which creates more pain, which creates more clenching. It is a loop that nobody warned me about and that took me a long time to break. The bowel work has been some of the most unglamorous and most impactful work I have done.

Bladder

Most people do not connect bladder symptoms to endometriosis. I did not either, for a long time. I spent years being treated for UTIs that were not UTIs. I had a burning sensation when I urinated, a feeling that my urethra was too small, a stream that would point sideways or barely get started at all. Constant pressure, pain with a full bladder, needing to go urgently and frequently. Ovary pain that spiked specifically when I was peeing around ovulation. And that particular misery of not being able to pee at all after sex.

What was actually happening was a combination of adhesions pulling on my bladder, pelvic floor dysfunction keeping everything in tension, and a bladder lining that had been chronically inflamed for so long it was hypersensitive to almost everything.

Pelvic Floor

By the time I got to pelvic floor PT, my therapist found significant restriction throughout my entire pelvis and abdomen, including my ribcage. My pelvic floor had been in protective mode for so long that the bracing had become structural. I had jaw tension my PT told me was directly connected to pelvic floor tension, tooth grinding, foot pain, sciatica down my right leg, buttock spasms, and pelvic floor dysfunction that was contributing to my bladder symptoms, my bowel symptoms, and my pain with sex.

Pelvic floor PT at Lake City PT in Spokane, WA was one of the most important things I have done, full stop. The manual mobilization of adhesions that my PT was able to do changed things for me in ways I did not expect. If you have not seen a pelvic floor physiotherapist, this is the part of the post I really want you to take seriously.

Adhesions

When disease grows on organs and the body responds with inflammation and scar tissue, things that should move freely start to stick together as if caught in a spiderweb. My bowel, my bladder, the left side of my ribcage. That tugging feeling when I coughed deeply, or when something under my ribs pulled hard during exercise, was adhesions. The restriction my PT found in my left ribcage confirmed it.

You cannot fix adhesions with supplements or diet. But you can keep them pliable, reduce the inflammation that drives more scarring, and address them directly through surgical excision and physical therapy.

Nervous System and Trauma

This is the piece most people skip, and I understand why. When you are in pain, you want to fix the physical cause. You are not thinking about your nervous system. But years of chronic pain, medical dismissal, and traumatic experiences inside the healthcare system do something to the body that does not resolve on its own. My nervous system had learned to treat almost everything as a threat.

I had anxiety that felt more physical than emotional, nightmares every single night, sensitivity to loud sounds that felt disproportionate, dizziness when I stood up, cold hands and feet that never seemed to warm up, lightning bolt sensations through my pelvis and down my legs, burning pain across the front of my thighs, random abdominal zings, buttcheek spasms. My nervous system was not misfiring. It was doing exactly what years of unaddressed pain had trained it to do.

EMDR therapy was the thing that finally started to move this. It processes medical trauma in a way that talk therapy alone could not reach for me. If you have been through what many of us have been through in this system, I want you to consider it seriously.

Systemic and Whole-Body Support

Some symptoms do not fit neatly into one system. Brain fog that made me feel like I was thinking through wet concrete. Fatigue that was not just tiredness but a full-body depletion. Puffy face. Always thirsty. High and low energy that did not match what I had eaten or how much I had slept. These are the symptoms that remind you that endometriosis is a whole-body disease, not a pelvic condition.

Supporting the whole body means reducing the total inflammatory load. The liver, the gut, the immune system, the lymphatic system, and the hormones all need to be working together for any of them to work well. When one is overwhelmed, the others feel it.

A Note on How I Got Here

This protocol did not appear fully formed. It was built slowly, through elimination diets, lab tests, PT appointments, late nights reading research, and a lot of trial and error. I still adjust it and find things that do not work and remove them. The muscle relaxer I was prescribed is not on this list because it worsened my constipation and I stopped it. The laxative teas I used to rely on are gone because they were damaging the very system I was trying to support.

I am not a doctor, I am someone who spent years being failed by a system that did not understand my disease, and who eventually decided to become the most informed person in the room about my own body. That is what I want for you too. Not my protocol, your protocol. Built on an understanding of your own biology, your own triggers, and your own goals.

If this gave you a framework to start from, or helped you understand why certain symptoms might be connected to systems you had not considered, that is enough. Keep learning, keep tracking, and keep asking questions until you get real answers.

Disclaimer: Nothing in this post is medical advice. This is my personal experience managing my own endometriosis. Please work with qualified healthcare providers who understand this disease before making changes to your own care.