“Women with endometriosis commonly suffer from heavy periods.” “Period pain is common in women with PCOS or endometriosis.” “Women with endometriosis commonly suffer from pain, chronic fatigue, headaches, and bloating.”
I lived in “common” for a long time. It made me feel safe, when in reality, it was avoidance. At some point, unfortunately a very low point, I realized I wasn’t interested in being “common” anymore. I wasn’t interested in being a number in those studies that my doctor had recited off to me many times, over many years.
Quite the contrary, actually. I was interested in getting to the root of the issues.
You see, as someone who previously suffered daily from an autoimmune issue, you get used to hearing things such as “management of symptoms” or “new trials with this medication seem to help alleviate x, y, and z.” And when you are desperate, and riddled with physical pain, alleviation seems like the answer, but it’s really just a band aid over a gaping wound.
Your identity starts to shift. You start believing that there is never going to be hope of remission, because remission isn’t talked about. But I have always been a curious soul, the kind who asks all the questions. I’m the person at the front of the class with a notepad ready to take color-coded notes. So, in hindsight the notion that I was going to become this detective-like in regards to my health isn’t shocking.
Six years ago, after four surgeries, my doctor told me, “there isn’t much more we can do for you. You know people with long term issues start to really let the pain get inside their heads.” I believe it was at this moment that I knew I was going to be a warrior, so I got a new doctor. But it was also the moment that I adopted a new identity.
You see, I bring this up because I believe verbiage is important, especially when it’s something you repeat over and over to yourself. I also believe that for my journey, I had to go through this phase. This phase is what adapted into where I am at now, but in reality what got me away from believing that someone else knew what was best for me.
Before I was an endo warrior, I was the person who did everything my doctor said. I let them try “new things,” experiment with every single kind of birth control and hormone therapy there was. And in fairness, I’m not really shocked that this didn’t work. Not now at least.
What you tell yourself matters. I can’t say it loud enough, but you have to want to heal. You have to believe that whatever faith you have, whether that’s the Universe, Karma, or a “man in the clouds,” you have to know there is something bigger than you. Because this is where the change happens. This is where the outside noise gets dulled and the voice of your intuition can speak.
Healing happens, when you decide to believe that it will.
It happens when you decide to start to trust your intuition. I promise you always know what you need. You just have to listen.
I’ll share an example.
By the end of 2018 I had had five laparoscopic excisions. In layman's terms, I had been cut open five times, and had the insides of my reproductive tracks cleared of endometrial adhesions and scar tissue, and in the last surgery, my bladder as well. When I went in to see my specialist, I was beside myself. I was on more medications than I can recall, and I knew I only had one more option, Lupron injections. The option I really didn’t want to do, because the side effects were heavy. I started the first series of injections regardless, what other options did I have? By this point I spent most of my days in pain.
I knew instantly that my body was rejecting it. Horrible night sweats-but all throughout the day, dry mouth, fatigue, severe vaginal dryness, and worst of all, no pain relief. In the Western world, I would have started more medications to counteract those side effects, but I said no. From here I started trauma work. I didn’t get immediate pain relief. In fact, everything got substantially worse before it started to get better.
Slowly I started to become more curious about why my body might not have responded to the injections as planned. Was it actually working for me, and not against me? Is this what the mind+body connection really was? When I started the injections I never thought that the rejection of the Lupron could have been my body trying to signal to me; I just thought I needed to fight harder. As any true codependent, I went from avoiding the suppressed emotions of my shame that I had internally been carrying for years to attaching myself to the notion that I must not be fighting hard enough.
I wasn’t “warrior enough.”
When I went back to my specialist I remember asking, “What if I just don’t do any medications, what if I just see what happens?” Ultimately I was deterred from trying this because the answers I received led me to fearing my own body even more, and I was quickly back to the path of “common consequences that other women with endometriosis had experienced.”
It would not be until another year later that I finally took a chance on my intuition, and chose to trust in myself.
In November of 2020, I anxiously went into my doctors appointment requesting them to remove my IUD which was the last form of hormones I had in me. I had already started to taper all of the other medications I was on, and to this day after 27 months I am finally pharmaceutical free. During my appointment I was met with hesitation, but I know it was out of good intent. I wholeheartedly expressed my intentions, and that I was no longer interested in being on medications. I myself was reluctant. I had never trusted my gut, led by intuition, or ultimately believed that I knew what was best for me.
Recently, I walked into my annual exam with the same specialist. He looked at me, and said, “You don’t even look like the same person. I know that you are, but what have you done?!” Tears welled in my eyes, and with a chuckle replied, “What have I not done?”
I went on to explain the modalities of functional medicine that I had started to implement, quickly referencing all the books, masterclasses, doctors’ work I’d studied, additional testing I’d done, and then I got to the place of therapy. I looked at him and said, “Do you remember when I met you, how upset I was about being told the pain was in my head?” He nodded and I carried on. “The pain was never in my head sir, the pain was in my heart.”
He nodded, and said. “You know Ali, I haven’t seen many patients willing to do the work you have, and it’s admirable.” For the first time I had felt truly seen by Western health. I sat with that feeling, and honestly I am sitting with it. Tears form as I write this because there is an amount of isolation that went into my healing journey, and there is still the humanistic fear of ever being that sick again. No doctor, specialist, therapist, or friend could tell me the right answer, and as a warrior I constantly felt that I needed support to continue fighting the good fight.
I know now that my flight path has changed, and I’m no longer interested in fighting. Being a warrior is exhausting, debilitating, and quite frankly kept me sick for years. At the root of almost all autoimmune issues is chronic inflammation, but how is constantly existing in fight mode an anti-inflammatory?
I had to actively choose to believe that my body wanted my soul to exist in it. It was never about the autoimmune system attacking itself, it was always about connecting to the body’s needs and deeply listening. I still find myself in bouts of anxiety, and when it comes I recite to myself, “the body is designed to heal.”
I don’t share this to disempower anyone with a chronic disease who is in the warrior phase. I was there. I lived there for many years. I share this to provide hope for peace in your body. For you to know that at one point, not too long ago, I didn’t believe that I would heal. This is why I challenged the “common"—hell, I even challenged my own reality. There is hope for a less inflamed system, a body that knows peace, a mind that believes in balance, and an enlightened intuition that will lead to healing.
Ali Ramos is a mental health and wellness coach, with additional training in functional diagnostics and nutrition. She focuses her private practice on helping women pursue the connection between the mind + body in hopes to promote self-healing through coaching with a trauma informed lens. Ali was diagnosed with Endometriosis at the age of 17, and underwent 5 laparoscopic surgeries, medical interventions, and even Lupron therapy. After struggling for 11 years, she started trauma therapy, and found that with the right approach and functional support, her symptoms started to diminish. Now, at the age of 32 she has been in remission for 16 months and lives with her husband, dog and cat in Costa Rica. She shares her resources and story in hopes to show women that there is hope and that even with decades of suffering you can heal.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.