My Endometriosis Story

Give me all the details...

Warning: Pissed off energy and cussing - and you can probably so relate. :) & a little long, but how do you write about something that’s been a 10 year journey…

One day during class my freshman year of college I was barreled over in excruciating pain, carrying my stomach like it was going to split from my body at a minute's notice. I felt like my insides were trying to tear away from my body like I’ve been poisoned and it was trying to free away. A pain I’ve never felt before and left me feeling afraid as to what was happening to me.

A friend took me to the ER, I could barely walk, talk, losing my breath. It was hard to concentrate and fill out the necessary paperwork. I left the ER room with no clear answers, no medications, no pain relief, and told to increase my water intake as I was a bit dehydrated. An experience women face far too often. I went back to my dorm room and tried to sleep it off. The next day feeling much better like it was all just a dream. Telling my friend, “must have been a 24hour bug.”

But, then came the next time and the next time. All of which felt like it was growing in intensity. Over the years and after many doctor and late night ER visits, I brushed it off, believing it was all in my head, it’s just my cycle and I have painful periods. It’s what the doctors said, so why not believe them.

I had periods where it wasn’t present or wasn’t that bad and phases where it was present every month, rolling in like a storm, like clockwork, excruciating turmoil. I couldn’t escape from it. Simple over the counter medicines didn’t help. For years, it was just stomach/ovary pain. I didn’t notice much of the other symptoms, It was a time of my life where I was focused on schooling and less on my trauma healing, distant from my body emotionally. I didn't notice fully what was impacting me, other than I felt like shit and needed to go to the ER. The ER was the answer to everything back then. I had medical insurance from being in Foster Care, I had the luxury of trying to get answers, except none came. It was hard to not feel absolutely drained and worthy of being pain free.

How is this something women go through? How can women function daily and keep up with their professional and personal lives? Meet all our demands. We’re freakin warriors, I'll tell you. But why are we in so much pain we have to leave work and lay in the fetal position for hours until we magically fall asleep, hoping when we wake up it’s gone. For years, this was the game. Pain free, pain, ER, lay in bed for days, try medicines, sleep, it goes away and then it comes back. What boggles me the most is that doctors would tell me, “get more exercises, drink more water, eat healthier” like it was the magical answer for everything. Which I think is total bullshit.

Here’s why.

I felt defeated and absolutely crushed because you know what? Outside of the classroom and my jobs, I was in the gym! I worked out nearly 6 times a week, lifting weights, doing cardio, running stairs until I was out of breath. It was where I could let off steam, escape from all of the hard things, and just focus on one rep at a time. That was my medicine to being a survivor of sexual abuse and rape, a first generation, former foster youth, college student. So when the doctors told me this, I knew this wasn’t the answer but I believed them over myself. I let the months turn into years, believing doctors who had doctor degrees and years of experience, believing men doctors knew women's bodies.

p.s. I am in different bathrooms of my home but below you can see the timestamp. CRAZY!

Here’s a photo that shows the extreme bloating (#endobelly). I was in peak week of a bikini/bodybuilding competition, where I could see my abs in certain positions. Suddenly like 2 days before competition day, I was erupting, my stomach expanded, the pain unbearable, I wanted to die. I was irritated and angry this was happening before my competition day. A day I had prepped for 14-16 weeks, eating super clean, exercising 6 times a week, doing endless amounts of cardio, putting my heart and soul into this prep. The day of, the bloating was still present but better. The pain went away, thank god.

I share this journey of my life with bodybuilding preps and exercise because I was literally doing what the doctors said to do. Was it extreme at times and could I have added too much stress to my body, absolutely. The bodybuilding lifestyle isn’t an everyday lifestyle and I mean the lean and shredded kind (what’s necessary for the stage.). It’s unattainable for long periods of time. But that doesn’t equate to stomach and ovary pain.

Anyho, exercise and diet isn’t the answer to everything and it irritates me that doctors presume people are not doing these things.

Am I overreacting, being too needy?

I used to think maybe I'm overreacting. Maybe it’s not that bad. But, all I’ve done is try and rationalize to not be seen as another woman being “too emotional” and trying to play doctor. The narrative that women are too much, too emotional, needy, overreacting irritates me!! I was tired of succumbing to this narrative! When in reality women are just trying to be heard and be taken seriously and sorry, we’re actually connected to our emotions. And unfortunately people are left trying to diagnose themselves because sometimes we don’t get answers.

This is a simple reminder that not every doctor will have every answer, even if they like to believe they do. Most men won’t even know what endometriosis is, hell some women doctors don’t either which is sad because it’s not a rare illness. It affects 1 out of 10 women! If you are fired up and saying girl, yes, know you deserve to find answers. Keep trying, ask for new doctors, find people who specialize in endometriosis, tell your primary care physician to make a referral. They are there to serve you, to help you.

This too shall pass…

I remember an ER nurse saying, “this too shall pass” during an episode while I grunted here and there from the pain, while tears trickled down my cheeks. My insides were on fire physically and emotionally, “don’t you dare!” It made me feel like she was saying this to silence my voice, my pain. Like I wasn’t allowed to express frustration, share that I’m scared of what this could be because it happens every goddamn month and no one else seems to care enough. It made me feel so small. I know she was trying to comfort me with how she knew how but this too shall pass, but it always comes back!

I was drained!

I grew so tired. Tired of being silenced. Tired of being seen as someone searching for drugs in the ER (when for the longest time I refused them because I’ve seen what addiction does to people and it often starts with some sort of pain). Exhausted by the crude and invalidating comments by men and women in the ER room or doctors who don’t know what to do with me, or think I’m depressed and should be put on antidepressants, or doctors who wanted to throw birth control at me to silence my voice, pain, and emotional suffering. When all that is if your pain is endometriosis is a non helpful band aid. If a doctor immediately says, let’s get you on birth control or try a new birth control all before an endo surgery, run!

I grew angry at my body. Angry that my body was working against me. Playing victim to believe my sexual abuse and being raped created this mess.

I know it can feel like a never-ending experience and rabbit hole of information. To have to rely on women's stories because there is a lack of medical information and priority when it comes to women's health and reproductive systems. But, please keep advocating for yourself and let the support you do have, help you.

Where my husband and I said no more!

The most recent flare, 9 years into this journey of pain, ended up being present for 8 months straight, making it nearly 10 years of dealing with this chronic illness. A year prior, I had moved overseas, so the new fears with doctors were not being understood and fully heard due to language barriers. This pain was coming at a rapid pace almost 10 fold of what I had experienced before. Other symptoms arose outside of the stomach and ovary pain like painful bowel movements, constipation, extreme nausea, headaches, body aches, sharp hip pain, weird body/nerve sensations, the list goes on.

The pain and odd symptoms made me stop everything I was doing in my life, like it was shaking me literally to see, telling me to pay attention and make this a priority. To fully face my pain, my body, and the deathning like disease. I processed so much on the page (journaling), untangling beliefs, dissecting narratives we’re often left to take on due to societal pressures and lived experiences. Coming face to face with my body and how she was feeling. It was time to officially take my health and well-being seriously. To take my pain seriously and not believe pain is my fate due to a childhood conditioning of it.

It’s been tough advocating for my health and well-being in a country where the primarily language is German. (moved overseas a few years ago.) I often left appointments feeling defeated and unheard and with prescriptions for laxative and stool softeners and medications to “get ahead of the pain.” I’d leave crying, sharing everything with my husband who could speak German. As the episodes intensified, my well-being and mental health took a toll, the pain so excruciating, so paralyzing, my husband said no more! He stepped up for me, translating and explaining things in detail to doctors, making appointments and not taking no for an answer. It was beautiful to see him fight so hard for his wife. I felt/feel so loved and grateful he could see the amount of pain I was in and how it was impacting my mental health and my life, our life.

He found an endometriosis specialist clinic and from there we finally began to get answers. Within just a few visits, It was encouraged that the laparoscopic surgery would be necessary. Check out my blog post on what is endometriosis, how to get diagnosed and if surgery is necessary for you.

Prior to this procedure, I would also need a colonoscopy due to so many of my symptoms involved digestion, bowel issues.

Endometriosis Laparoscopic Procedure

I’m not gonna lie, these procedures scared me. Mainly because I’d have to go under anesthesia. With my childhood trauma of sexual abuse and rape, this was a real and scary concern for me. To have no control and at the mercy of people. Additionally the two overnight stays. On top of that, I would have to do this procedure quickly which meant during COVID times. That was a scary thought too. What if I catch COVID during the operation or in recovery, could it take me out because my body was in healing mode? It was a tough time to say the least but I knew it was necessary and I needed to find calm in the fact that I didn’t want to live with this pain any longer. To immerse in positive affirmations and gratitude for being taken seriously and finally getting answers.

During the operation, endo was found and removed by ablation. Endo was located in the ligaments and connecting tissue on both sides of my uterus/pelvic. Several lesions were found and removed on my bladder and the most surprising was that it was found and partly removed from my diaphragm.

It made me realize the loss of breath and struggle during recent hikes were also tied to this illness. It’s crazy how much is connected.

Check out my post on Endometriosis Surgery Preparations.

Concluding thoughts

So so much can be said about endo, my experiences, and often what women face. I’m still processing and untangling these stories and beliefs and learning to step up for myself and how to live with this illness. I’ll be working on a few other related posts, especially post surgery (1.5m post op now).

Please let me know if you have any specific questions and I’ll do my best to answer them. If you would like to chat about your experiences and you are needing support or want to talk about your concerns or worries, I’d love to be there for you. I’m also on Instagram at @Kelliembecker You are not alone in this debilitating chronic illness, you are not crazy and you deserve to be pain free and live the life you desire.

With love,