My Journey with Endometriosis?

This blog has been on my mind for a very long time. I've even started writing it multiple times over the last 5 years but it's never felt like the right time. For some reason I thought I had to be at a better place with my pain before I shared my story. I guess I wanted to write an inspirational story with a happy ending. I don’t know when or if that will ever happen.

It took years but my intuition and determination helped me find the right surgeon, who removed most if not all of my endometrial tissue and made it possible to get pregnant. The physical and mental pain motivated me but my desire to experience pregnancy and motherhood pushed me to fight for the right care. Being told that I might have to manage chronic pain for the rest of my life and that I might not be able to have children of my own didn't sit well with me; I couldn't accept that.

WHAT IS ENDOMETRIOSIS?

(Information found at centerforendo.com)

Endometriosis is correctly defined as “a systemic, inflammatory disease characterized at surgery by the presence of endometrium-like tissue found outside the uterus, usually with an associated inflammatory process. It is a spectrum disease with a variety of presentations, and pain, inflammation, infertility, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), GI and other organ dysfunction, and much more are common with endometriosis” (Int’l Endometriosis Working Group, 2021).

Often found in the pelvic cavity, the disease can also be located in distant locations like the lungs. Unfortunately, misinformation about endometriosis persists, and its far-reaching, systemic effects often go unrecognized. Delayed diagnosis and poor management are common, with many patients suffering through ineffective (non-excisional) surgeries and inadequate medical therapies (i.e., GnRH analogs, etc.).

There are 5 stages of endometriosis. The diagram to the right was found at American Society for Reproductive Medicine ASRM.org

BEFORE MY DIAGNOSIS

My chronic pain journey started in 2016, but my endometriosis journey started much earlier; the pain started when I got my first period in 2005. I suffered for 12 years before I knew what was going on with my body.

The first couple years I dealt with extremely painful periods that would result in staying home from school, but I was frequently told that I was being dramatic, "every woman has to endure that pain.."

Things got worse for me in high school, I started getting frequent urinary tract infections, they started happening once a month and that lasted for three years. I was diagnosed with chronic UTI's and started to see different doctors and specialists when I started college. My doctor at the time recommended taking a daily antibiotic, but I didn't feel like that would solve anything (I'm so glad I listened to my intuition).

In 2012 I saw a urologist that looked inside my bladder, but there were no explanations for my pain other than assuming that I wasn't taking care of myself well enough. At this point in my life I thought that all of my doctors knew what I needed and how to help me. I felt like there was something wrong with me. I was so naïve.

I managed that pain along with major anxiety and minor depression for over 10 years. I think the anxiety and depression were brought on by birth control at first (I tried almost every kind of pill, ring or shot they recommended and suffered from side effects with every single one of them). It also came from feeling weak and lazy, like I was doing something wrong or I was too sensitive.

The physical pain has always affected my daily life and stress levels, but one thing I didn't really talk about is the mental and emotional pain I experience with the fluctuations in my hormones. I still deal with this today, It's much worse than regular PMS. Around my period I feel overly emotional (and that's putting it lightly), sometimes I feel like I'm loosing my damn mind. After a lot of research and talking to my doctor, I was diagnosed with PMDD (Perimenstrual Dysphoric Disorder). Most of my life I've only had to experience these symptoms for a week each month. Starting in 2016 though, these symptoms started happening more frequently. I felt like my mental and physical pain was getting worse every month, and eventually I felt like I was in unbearable pain three out of the four weeks.

MY FIRST SURGERY

In 2016 I moved to Longmont Colorado

with Phillip and his friend/roommate at the time. This is when my pain became excruciating, enough to make me quit my job and stay in bed most days (that killed my self esteem). I went to a new doctor and many different urgent cares for a little over six months. All they did for me was prescribe hydrocodone or oxycodone, even after explaining that I really didn’t want to be on these heavy pain killers all the time.

I ended up spending hundreds of dollars from my student loans to try to find answers as to what was happening to my body. Every evening for 3-4 months the muscles in my abdomen and pelvis were contracting so much that I felt like my ribs were going to cave in. I tried to tell my gynecologist at the time that I needed surgery to figure out what was wrong, but she kept gaslighting me.

The pain got so bad the night before my college courses started and I ended up having my grandmother take me to the Emergency Room. They did an ultrasound, gave me some pain killers and sent me home because they couldn't find any explanation. The following day I went back home and tried to find the energy to go to school. That evening the pain spiked again, it was so bad that I called a friend to rush me to the ER at 10pm. I ended up taking a pain killer on the way because I couldn't handle it anymore. Once I got to the hospital the meds started to kick in and the nurses didn't take me seriously. My friend stayed as long as she could but had to go home to sleep before work. The hospital did a CT scan, woke me up at 2am to tell me they didn't find anything and told me to find a ride home. I ended up having to order an uber to pick me up and bring me home. One of the absolute worst nights of my life!

The following day I felt extremely defeated. I didn't have an appointment or money to make an appointment, but I drove to my gynecologists' office and sat in their waiting room balling my eyes out. I had no idea what to do anymore. I needed someone to take me seriously. Eventually they sent a nurse out to console me and she took me to a small room in the back to ask what she could do for me. I eventually blurted out that I needed a surgery. They brought my doctor in and she very strongly recommended that I avoid getting surgery because I had never had one before but I signed a waiver and we started the process of getting on the waiting list. I had to wait a couple months but I was so happy that we had a plan to figure out what was going on. I was positive that they would find an explanation for my pain when they took a look inside.

This surgery took place on November 16th, 2017. This surgery gave me a diagnosis but I didn't find the relief I was hoping for. My surgeon was young and knew a little about endometriosis but she wasn't a specialist by any means. At this point in my journey I didn't think I needed someone that specialized in endometriosis. When she went in she found that I had an endometrioma cyst that had burst and the fluid was just floating around in my pelvis. My body was trying to protect itself by contracting all of my muscles and trying to get rid of the toxins but it couldn't. She drained the fluid and removed a small amount of endometrial tissue (missing so many lesions).

When I woke up from surgery she was very cold, I’m so thankful that one of my nurses gave me the extra care and kindness I needed. She set the pictures from my surgery on my stomach, told me I had endometriosis and said "see you in a month." I had no idea what this meant for my future. Unfortunately I went in a month later still experiencing extreme pain, it had improved enough that I could manage it with large doses of Advil or Aleve daily but I didn't want to keep doing that. My surgeon seemed shocked that I was still in so much pain, she recommended Lupron depo Provera (a shot that shuts down your ovaries for six months, like you’re in menopause) or a hysterectomy. When I turned those options down she told me that I would most likely have to deal with chronic pain the rest of my life. I am so thankful I didn't listen to her, I did my research and I asked her to refer me to a pelvic physical therapist. Which finally started to give me some relief from the muscular pain.

THE IN-BETWEEN

I spent the next two years managing moderate pain. Still having to call out of school and work frequently. Spending the entire week of my period in bed suffering from severe abdominal pain. Everyone in my life, myself included, felt like I should be feeling much better. I still felt like there was something wrong with me and not my body.

In 2018 I decided to go back to college to finish the last year of my bachelors degree. I still had student teaching to do after that year but I was determined to finish despite the pain. I tried working and taking classes for a couple months, but it was too much for me to handle. I had to focus on one or the other. The pain started to spike and became much worse half way through the school year, and I was so thankful for the staff at MSU (Metropolitan State University of Denver.) They helped me get into counseling, get accommodations for my classes, and their doctors listened to my symptoms and ran tests to see what they could do. They made a referral for an ultrasound and found an extremely large cyst in my left ovary (the same ovary that I had surgery on in 2017).

;In my free time I researched everywhere, but the only place I felt safe to explore and express myself was on social media. Instagram to be specific. I started searching through all of the endometriosis hashtags, memes and educational pages. Most of these pages led me to specialists in California, New York or Georgia. I thought I was going to have to plan a trip to have surgery in another state; which I was willing to do if I had to. Around the time that I received my results from my ultrasound, I found an #endosister (social media friend going through a similar experience) in Colorado. I reached out to her and she told me her whole experience. I researched the specialist she recommended and set up an appointment immediately.

MY SECOND SURGERY

That first appointment felt amazing, the nurse practitioner also suffered from endometriosis and she listened to ALL of my symptoms. That was a shock to me, and I knew I was in the right place. Being the only endo specialist in Colorado, Dr. Nelson's surgery waitlist was 8 months out with the chance of getting in sooner if someone canceled. Ironically, this surgeon was in the office across the street from my first surgeon...

This plan made it impossible for me to complete my classes and start student teaching, so I spoke to my advisors and came up with a plan to graduate with my bachelors in June of 2019 without my teaching licensure. This threw off my plans for starting a career, and that felt wrong at first, but looking back I wouldn't do it any differently.

This news also did major damage to my relationship with Phillip. Honestly I don’t know how he dealt with most of my pain, but he was a huge reason I kept going and didn’t let it bring me down. We fished almost every weekend to get my mind off the pain. When I found out about my second surgery I knew that we couldn’t live together anymore. I couldn’t make him pay my bills or be my caretaker. We couldn’t afford it, so I moved in with my grandfather about 3 hours away and we lived separate lives for a year.

The recovery from my second surgery was way more intense, but my family supported me through it. Dr. Nelson excised most of the tissue out; the lesions were covering the back of my pelvis, rectum, bladder and around my left ovary. After surgery he let me know that my endometrioma was left open by my first surgeon, so it continued to fill with fluid and burst each month.

Finally! There was an explanation for my pain, even my urinary tract pain and mental strain. I realized that I no longer had to shame myself for loosing motivation, getting grumpy or shutting down. My body couldn’t heal itself and I realized how strong I was for doing everything I could to keep moving forward in life. I started to act and feel grateful for everything, I slowed down a bit and started to enjoy myself as the pain subsided.

Warning: Graphic images from my 2nd surgery

THE HAPPY ENDING

(to my story, not my endometriosis)

Six months after my surgery Phillip and I started seeing each other again; fishing of course. I found out I was pregnant about a month later. I was in shock, for many reasons. I knew this was going to change the course of our lives.

Phillip had a great job in Grand Lake Colorado, guiding. I was offered a great teaching job in Elizabeth Colorado, near my grandfathers house. I knew that I would be the one to take the leap and move to the mountains, that’s where I wanted to go anyway. We started looking for housing immediately and I accepted a position at a childcare center in the grand county.

My pregnancy was the best nine months of my life up until I had Isabella. The pain was gone, my body and mind felt amazing. My life took a huge turn and I realized how grateful I was for everything I had gone through. I ended up helping other women from sharing my experiences, I learned to adapt and face challenges head on. I felt confident and comfortable in my own body.

The summer of 2020 felt like a dream. I was moving to the most beautiful place, in a cozy condo next to the river. I started guiding for Kirks Fly Shop and took out quite a few trips throughout my pregnancy. Most of my trips took place in Rocky Mountain National Park (such a magical place). I met some amazing people, got some great advice on parenting and gained so much knowledge from the time spent outside. Unfortunately the troublesome fire came through RMNP in October and ended our guiding season abruptly.

Isabella Rose was born on December 29th, 2020. The best day of my life by far. My pain stayed away completely until my cycles returned in August 2021. My pain is still minor, but there is no cure for endometriosis. I will keep fighting for the right care for this inflammatory disease.