Endometriosis: My Long Awaited Diagnosis + What It Means

My heart longs to make this post really eloquent. To labour over the words and the phrases because it feels really significant to me. But really, I know deep down, that what I want to accomplish here isn’t to be eloquent, it’s to be honest.

When I set out to create this platform a year ago, my deepest desire was to fill a space with resources that I wished I’d had, that would have helped me to feel less alone on my own health and wellness journey. I wanted to share recipes + tips + tricks, but I also knew that some of what I wanted to share would be a bit darker + harder too. And that’s because real life carries space for both. Real relationships carry space for both.

I hesitate to share some of this with you because I don’t want to sound like I’m complaining. I really don’t want to be negative, but I do want to be realistic. I do want to be transparent. I want to share all of the parts of my story so that maybe they can shine light on some of the hidden corners of your story too.

Before I can explain where we are today, I have to take you back to where we’ve been.

The Past

If you’ve been with me for any length of time, particularly over on instagram, you’ll probably have heard me mention my stomach, or rather my struggle with my stomach, ha! For as many years as I can remember, I have been in a constant belly battle between wellness + illness.

For most of my teenage years and into my 20’s, I had aggressive diarrhea multiple times a week. It was debilitating and embarrassing. My fear around getting sick in public kept me from going out + even from completing college exams on time (thank goodness I had understanding professors). Removing gluten at age 21 made it better, but it didn’t go away.

In 2013, a switch flipped, and I’d suddenly go weeks without going to the bathroom. Over a few days my belly would grow bigger + I’d become more uncomfortable. By the end, my pants wouldn’t even fit. I was scared to eat anything and began self treating with laxatives. I developed anorexia in a feeble attempt to cope with a digestive system that had just seemed to give up on me.

In 2015, I moved to Uganda and things slowly improved…for awhile. I flipped and flopped between the two digestive extremes + was graced with the presence of gas that could peel paint off of walls. My roommates used to burn candles in every single room because the smell permeated the entire house. It was horrible + I was so embarrassed.

Before I got married in 2016, my digestive system was so messy that doctors tested me for worms and irritable bowel disease. I was put on the low fodmap diet + told to remove food group after food group, all while fighting my way through my continued eating disorder recovery.

When I moved to England in 2017, I started on birth control and things seemed to improve. My digestion normalised, but I started getting all sorts of bladder infections. After 4 courses of antibiotics (yikes) in our first 7 months of marriage, I had my iud removed and tried to move on with my life…but then the tummy stuff came back.

I was convinced I had an autoimmune disease. I was tired all of the time. I had diarrhea or constipation constantly and my stomach just HURT. I was bloated and gassy after everything I ate. A round of Whole30 brought me some relief, but as always, the symptoms eventually returned.

In 2018, I was tested for Celiac’s Disease (after a semi-traumatic Gluten Challenge), for parasites, for IBD, Hashimotos, hypothyroidism…only to come up empty handed.

And then I gave up.

The Present

After spending so many years, seeing so many doctors, hearing so many people tell me that there wasn’t anything wrong with me, I began to believe them. I thought that maybe this was normal, maybe other people just coped with their pain and their problems better than I did. Maybe I was weak.

And so, I’ve done my best over the last few years to really manage my symptoms as best as I can through diet and lifestyle. And let me tell you, they are both incredibly powerful. I really do dread to think where my body would be if I didn’t feed it well, move it often + rest when it needs. I am a firm believer in all of those things.

But I was still the sickest healthy person that I knew.

About 6 months ago, my health started changing again in ways that I couldn’t ignore. My diarrhea was coming back with vengeance…in confusing cycles. I’d be fine for weeks + then knocked down for the count. It felt like I was passing knives. I started experiencing random bouts of nausea, lasting from a few hours to entire days. If I managed to eat, it was bone broth or soups only. My abnormal periods were getting longer + heavier and more + more painful, even waking me up in the night in tears. I had yet another bladder infection + my bloating was so intense I often couldn’t wear anything without a stretchy waistband.

I remember lying in bed, just 2 months ago, clinging to my husband in absolute despair. I felt desperate. I felt alone. I felt broken. And I felt like I was absolutely out of options. I wondered if it was just time to come to terms that this is what my life was going to look like…painful.

My Diagnosis

But then a few days later, I woke up to a Facebook message from my brother. It simply read, “I read this article and the entire time I just kept saying, This is Jess. This is Jess. This is Jess.“

I hesitantly clicked on the article.

I read it + sobbed. It was me. All of it.

And so, even though I was terrified of what would happen, I booked another doctor’s appointment + I printed out the comic. I folded it up in my bag + I took it with me.

I sat in the waiting room, and I prayed. I prayed for a female doctor. I prayed for someone who wouldn’t dismiss me. I prayed for an answer.

She called me in to her office, asked me to sit down + to explain why I came in. I struggled to get the words out, but she was so kind, so patient and so gentle with me. I started at the beginning, rehashing the last decade of my life, like I’ve done with every single other doctor I’ve seen. And she listened.

Halfway through my spiel, she stopped me and said, “Have you ever been tested for Endometriosis?” I tearfully pulled the folded comic out of my purse and handed it to her. By the time she had finished asking me questions, she told me that she was 100% confident diagnosing me based purely on my symptoms and prior medial history.

I was overwhelmed.

The Misinformation that leads to Misdiagnosis

For those of you who, like past me, have no real idea what Endometriosis is, here’s a little summary:

Endometriosis is a disorder where the tissue that normally lines the inside of the uterus grows on the outside. It usually involves the ovaries, bowel, or the tissue lining your pelvis, though sometimes it can spread beyond the pelvic region. During your menstrual cycle, this displaced tissue thickens, breaks down, and bleeds. Because this tissue has no way to exit the body, it becomes trapped. This can lead to inflammation, cyst formation, adhesions, and pain.

It is believed that 1 in 10 women have Endometriosis, but it takes roughly 10 years and 8 doctors to be diagnosed. It’s taken me 16 years.

And I think part of the reason for that is, most people think Endometriosis is just a “period disease”, which on one hand is true. But, the reality is, a huge portion of the symptoms and impacts of Endo seem to have nothing to do with your periods. In fact, many sufferers (including me) experience them for significantly longer each month than just during their menstrual cycle. For some women, the symptoms are constant.

The most common, but often missed, symptoms of Endometriosis are:

• Painful periods (cramping, pelvic and leg pain, lower-back and abdominal pain)
• Bloating
• Painful bowel movements or urination
• Fatigue and chronic pain
• Excessive bleeding
• Diarrhea and constipation
• Nausea and vomiting
• Urinary frequency, retention, or urgency
• Pain during or after sex
• Blood clotting
• Infertility (though many women can still have children)
• Allergies and other immune-related issues are also commonly reported including food sensitivities.

My Future with Endometriosis

Since leaving the doctor’s office in December, I’m kind of in a place of waiting. Sadly, the treatment options for Endometriosis are relatively extreme + many are in direct opposition to my future desires and current values. There is no cure.

But, I’m really not going to get into the nitty gritty of what’s next yet. When we do a deeper dive, I want to do it from a place of real information, not gut reaction. I’m also never going to claim that there is one right or wrong way to go about treating any health issue or disease. Every single body + heart is different – so our decisions will be too.

At the moment, I’m waiting for an ultrasound that will help us to understand a bit more about where I’m at currently and what I can expect moving forward.

In the meantime, please know that I’ve been so touched by those of you who’ve reached out to me with your own illness struggles. I know how lonely + scary this process can be. For me, it has weirdly held a sacred space of both connection + isolation. In the moments of intense fear, I’ve felt deep loneliness. But, in the sharing of these feelings, I’ve been met with compassion, understanding + encouragement.

Please know if that’s you – if you’re struggling through, searching for answers + trying to make the best of a crappy situation, keep going. Reach out! Send me a DM or an email. Comment below + I’ll get in touch. You are strong + you are far from alone.

I firmly believe if its not good, it’s not done. I feel so encouraged to have a name to attach to my symptoms, for a body that’s healthy enough to work on healing + to have access to a wealth on information from those who’ve gone before me. There is so much good here!

My story (and yours) is still being written, Endo + all.

Endometriosis Resources

Because I don’t claim to be an expert in any way, shape or form on Endometriosis, here are some resources that I’ve found helpful in beginning to navigate my own journey.

Books: The Doctor Will See You Now by Tamer Deckin MD, One Part Plant by Jessica Murnane

Podcasts: This Endo Life, One Part Podcast, The Heavy Flow Podcast

P.S. This diagnosis has made me even more aware of what I’m putting in + on my body. I’m hyper focusing on cleaning up my personal care + cleaning products and will share more as I learn. Here’s a little post on Why I Cleaned Up My Makeup Bag along with what cleaner beauty I’m using now.

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