I wrote this after I was inspired by Katie Lemons (@twist_of_lemons on IG) to share my journey with Endometriosis. She compiled stories from 5 ladies and their struggles with hormone issues, infertility, miscarriage, etc. to create a space of community, love and empowerment. Check out FEMpowerment Fridays on her blog. Nobody wants to feel alone in their struggle ❤️
As I sit here on my couch tonight, nursing my 7 week old daughter, I have a beautiful moment of realization. Of how the world works in mysterious, meaningful ways, and how I truly have the diagnosis of an “incurable” disease to thank for this whole divine experience.
Recently I wrote about my decision to start tracking my monthly cycle, and I briefly touched on my journey with Endometriosis. I saw this as an opportunity to share my personal history with others. I hope women find comfort in relating to my experience and encourage themselves to research health options. I also hope to challenge medical professionals to stop the habitual “treatment” and instead explore the power of nutrition.
My junior year of college I lived in a house with three of my girlfriends. I remember waking up one night with excruciating pain in my abdomen. I wasn’t sure if I was had to vomit or if my insides were exploding- then, I woke up on the cold tile. I had passed out on the bathroom floor from the pain. I was so confused and slightly concerned, but decided to go back to bed. The next day my abdominal aches reminded me this was something I needed to get checked out. I was nearly 5 hours away from my primary doctor, so I went to a local urgent care facility. I explained what happened and the woman seemed confused. She tapped my abdomen, asked me some questions, then told me to get some laxatives because I was probably “backed up.” 🙄 Personally, I had never passed out from constipation before, nor have I heard of others doing so, but, sure thing lady.
Weeks later, as I had almost forgot about this freak incident, it happened again. I ran to the bathroom again with nauseating pain, but this time I threw up. It was miserable. My lower abdomen ached horribly for two days and I knew something was wrong, something much more than “constipation.”
After a bit of internet research (yeah, I’m THAT girl), I realized my symptoms were similar to a ruptured cyst. I mean, the signs were pretty obvious, so how the medical PROFESSIONAL couldn’t figure it out is still beyond me. I immediately contacted my gynecologist back home and set up an appointment.
My OBGYN ordered an ultrasound to look at what could potentially be an ovarian cyst. What they did find was a mass on my ovary, but unlike ordinary cysts (which can be common) this one seemed abnormal. The mass appeared to either be an endometrial cyst, or a tumor. Off to a great start, obviously..
After monitoring the mass for months and noticing its’ growth, we decided surgery was the best way to go. One of two things would be discovered: a tumor which would be sent for a biopsy, or an Endometriosis diagnosis.
I was terrified. I had never experienced anything that required surgery. Although this was an outpatient procedure, it was still scary. It all seemed to happen so fast. Unexpected AND under-explained.
This timing was terrible; my senior year had just begun, and I had to schedule my surgery within a few weeks. This meant traveling back to school and starting the semester with a heavily distracted mind, just to travel back home and take time off for surgery.
The day came and I went into surgery with such unclear expectations. I could wake up and be diagnosed with cancer, I could have a total hysterectomy, or “best” case scenario, Endometriosis. This uncertainty paired with my anxiety disorder – quite the cocktail.
When I woke up, I was reassured my reproductive organs still called the inside of my body home. My gynecologist then confirmed the diagnosis, Endometriosis. During the laparoscopic procedure, they found a cyst attached to my ovary that was larger than a lime. The cyst was then ruptured, and removed by laser along with the scar tissue that was wrapped around my pelvic organs. These lesions are notably what causes the pain associated with this disease.
Prior to my follow-up appointment, I obviously did diligent research on the disease- my disease. What I found was little to no answers. A whole lot of possibilities, but no real answers. And I didn’t get much more from the doctor.
Basically, it’s like this:
What causes it? Don’t know.
How do we cure it? Can’t.
What are the side affects? Possibly infertility, possibly cancer, possibility of reoccurrence, and probably surgery again.
The purpose of the surgery is more diagnosis and maintenance, than a cure. The Endometriosis can only technically be diagnosed through surgery, where the endometrial cell growth can be seen outside of the uterus. And any “treatment” for Endometriosis is only treating the symptoms, not the disease itself.
Now at the time I was 22, and a full-time college student with no plans for children in the near future- but I was devastated. I’ve always had an innate desire to be a mother. It just felt like it’s what I was meant to do. And now I felt hopeless. Hopeless and useless. I felt that I, as a woman, was put on this earth with ovaries, a uterus and a natural obligation to bear children. And I was told that my reality might not include that opportunity.
I had a really, really hard time with this. It was difficult to talk about because it involved my lady parts, and that made people uncomfortable. And because everything was still so unclear. I mean, I went into surgery not knowing if I would have ovaries when I woke up. Seriously?!
Following surgery, I was put back on birth control pills and told that we would do follow up ultrasounds to monitor the cysts. When I asked if I’d be able to ever get pregnant, he said we won’t know until it’s time to try. The fact that there was essentially no way for me to prevent or treat this disease drove me nuts.
Understandably, I wasn’t content with hormone therapy and a waiting game. So, I got back online (seeing a pattern yet?) and searched everything I could about endometriosis, hormones, and how I could manage this. So began my journey for a healthier diet. I started with anti-inflammatory foods, avoided endocrine disrupting foods, adopted a vegetarian diet, then vegan, but eventually I began to give up. It just felt like a struggle with too much uncertainty. I couldn’t find a perfect fit for what I was dealing with.
Soon after, I also experienced a series of irregular blood work. I was pushed back and forth between labs and CT scans that were just useless. I was suspected to have a thyroid issues because my TSH (thyroid stimulating hormone) would spike, but then appear normal in the next test. It was such a damn headache. After the thyroid seemed to be a bust, next up was the pituitary gland. They suspected I may have a tumor that was messing with my hormones. Wrong again. Looking back, those symptoms (along with my irregular cycles, extreme Premenstural Syndrome, heavy clotting menses, and terrible back pain) were all such CLEAR signs of hormone imbalance. Something that I now believe could absolutely be managed with diet.
So after years of just dealing, I made the decision to find another way to manage my symptoms that didn’t involve artificial hormones. Since the diagnosis, I had modified my diet to avoid dairy and meat from cows pumped with hormones as well as soy products. I also cut out toxic cosmetic products that disrupt the endocrine system, but I was still taking this little pill every single day. It seemed so backwards. I had been on hormonal birth control for 9 years, and if endometriosis wasn’t going to hinder my fertility, I believed that these pills sure would do it. So about a year ago I quit oral contraceptives . I decided after those pills ran out I’d let my body do its’ natural thing. It was time to find another way to prevent pregnancy and manage my symptoms of Endometriosis.
Those birth control worries were soon halted when I found out I was pregnant. This pregnancy was a surprise, but a very welcomed one. I believe that if I would’ve been complacent, and taken hormone pills every day until I wanted to try to get pregnant, it would’ve been too late. I think even another year of those pills could very well have hindered the function of my reproductive organs. I’m not certain of the long term affects of hormonal contraceptives, but this is purely the way I felt. I am grateful in every way for my chain of events.
My pregnancy was very special to me. I don’t think I realized it at the time, but Endometriosis was the reason I chose a natural birth. I got a lot of questions throughout pregnancy like “what’s the point?” in denying an epidural or labor induction. I didn’t know my answer at the time (pregnancy brain?) but it was because of my diagnosis. What if this was my ONLY chance to experience birth? What if I never got this opportunity again? I felt lucky to be pregnant and I wasn’t going to take it for granted.
During this pregnancy I tried my very hardest to keep eating healthy and avoid those hormone-hating foods. My body was responsible for developing the fragile reproductive organs that would serve my daughter for her lifetime, and I was conscious of that.
Then on April 2nd, I delivered a healthy baby girl out of a hospital, without the use of medication, into a pool of water. Exactly the birth I DREAMED about (and you can read about it here 😉).
Now that my body has been “reset” by this natural birth, I will continue the trend. I plan to practice the Fertility Awareness Method, and track my cycle, avoiding hormonal contraceptives. Fertility gurus like Alisa Vitter and Toni Weschler have inspired my newfound appreciation for the female body, and I look forward to learning about what goes on in there. I will continue to adjust my diet to work in sync with the phases of my cycle, and support my natural hormone production.
During one of the most stressful years for an undergraduate, I was given a lifelong diagnosis, little hope and almost no support. This created a lot of stress that I battled alone. I realize now that I’ve suppressed these emotions associated with my disease. I’ve pushed these memories deep down and tried to move on. But I want women who are struggling with similar issues to find support and know their options. To know that they can talk openly about what they are experiencing, and it not be an uncomfortable conversation. Sharing my story has been a part of an emotional healing long overdue. But my strength was found in the stories of women courageous enough to make their voices heard, and I hope to pass that on.