Who are we? How did we meet?
Content Creator and Show Host
At 17, I started to have continuous abdominal pain that felt like menstrual cramps, even when I wasn’t on my period. My legs ached nonstop, too. And the nausea… oh man. Out of the blue, I suddenly felt so sick.
Soon, I was carrying around plastic bags in my purse in case I suddenly needed to urgently puke or poop – could be either! – and there was no bathroom in sight. I was having diarrhea literally 25 times a day. That brought about a whole new range of problems: chronic fatigue, chronic dehydration, annual kidney stones, and a persistently weakened immune system.
Not to mention the actual period cramps – debilitating, out-of-this-world-pain that caused me to writhe on the floor, scream out in pain, throw up, and go to the ER. No medicine helped it, so I was absolutely terrified of my period. A major focus for me over the years has been learning how to get through insane amounts of pain.
Left on my own
Yet despite all this, no doctor could find anything wrong with me.
Two colonoscopies, an upper endoscopy, a laparoscopy, countless ultrasounds, neurological tests, allergy tests, stool samples, blood work, and more, confirmed over and over again by 11 different doctors that I was in excellent (yes, excellent!) health.
So, for years, I thought – in spite of my crippling menstrual pain and all my other symptoms – that I had nothing wrong with me. After all, that’s what I’d been told by every doctor I saw. Actually, I had been told by countless gynecologists that I couldn’t have pain like that, that those symptoms were psychosomatic, and that I should see a psychologist for anxiety.
I realized it was up to me to figure out what was causing my symptoms. I spent years researching, reading, and educating myself on the body, learning how it’s a complex system influenced by a multitude of factors, like food choices, sleep habits, environmental toxins, and even thought patterns. After years of trial and error, I found a combination of diet and lifestyle changes that helped lessen my symptoms. By my mid-twenties, I had become well enough to work full time – something that wasn’t possible for many years when my symptoms controlled my life!
In spite of all my progress, the one thing that never improved was those debilitating period cramps. In fact, those only got worse as the years passed. Around 30, I also had started having those debilitating cramps away from my period, during intercourse. Soon it was also triggered by foods that were previously “safe” for me. Or when I drank something cold. Even when I sneezed.
Surprise! It’s endo
Once again, I went to multiple gynecologists, until one finally said she suspected I had endometriosis.
After learning about the importance of seeing an actual endometriosis specialist, I was lucky enough to find one in my city and get an appointment with him. The ultrasound he did showed I had a grapefruit-sized endometrioma on my left ovary. Two surgeries later (one with a gynecologist oncologist to remove the mass which they originally thought could be cancer, and one with an excision surgeon), I lost my ovary and was diagnosed with stage IV endometriosis, with adhesions, fused organs, cysts, bowel involvement… You know, all the good stuff.
Getting diagnosed has solved the mystery that has been hanging over my health for over half of my life! I couldn’t even believe it.
I feel grateful that I finally have a diagnosis of endometriosis. Yet it saddens me that for years I lived such a poor quality of life, and it breaks my heart to think that my endo story is similar to that of millions of people. We struggle to be diagnosed, believed, heard.
We endo warriors are in this together. Since being diagnosed, I have met so many incredibly strong people who are also searching for answers, trying to live their best lives, and learning to get through the really dark moments that having endo can bring. The endo community has brought me so much comfort and strength. While it’s awful that we have endo, it’s so fortunate that we can learn from and support each other.
Through Amy, I have seen the struggles firsthand that you endo warriors can go through, and I want to tell you how strong you all are and how happy I am to be here to help support you.
I don’t have endo, at least that I know of, but I do have my own hormone problems. While I don’t have debilitating period pain like some of you do, I have lived around enough menstruators to know that my period pain isn’t normal. I have a lot of cramping, a very heavy flow, and terrible nausea, so Amy and I bonded over the fact that we dread getting our periods.
What’s really influenced me is that at 9 years old, I was diagnosed with Celiac disease. I had been sick before that with bronchial infections, pneumonia, allergies, and skin problems, and when I went gluten free all of that cleared up. So from a very young age, I had to learn that what I ate affected my health and how I feel.
My mom also has Celiac’s disease, so living at home made it easier to follow a gluten free diet. Once on my own in college however, I found it much harder to follow my strict diet. This was 10 years ago, when being gluten free wasn’t a thing like it is now, and gluten free options were not widely available. Also, in many ways I just wanted to be a typical college kid. So I ate pizza, pasta, and a lot of other typical college foods, and I saw my health problems skyrocket again. Sometimes, it’s hard to do the things we know are good for us! Do you ever have that trouble?
For the past few years, I have been back on track with my lifestyle and health habits. This has also really helped with my other problems of anxiety and IBS. I love learning the psychology of making habits stick and reframing your mindset and even your language to better support your priorities and goals. Stay tuned to hear more in future episodes!
How We Met
Brittany and I met at work three years ago and instantly clicked. We have so much in common: we are both gluten free, from the Northeast, and have made the choice to laugh instead of cry when ridiculous/ difficult/ frustrating stuff happens to us. And those kinds of things seem to happen a lot when you have all these health conditions!
Within the first few weeks of friendship, I called her work extension to come rescue me from an endoflare. Once someone sees you trapped in the building manager’s office, sobbing hysterically from pain and curled up on the floor puking in a trashcan, it either makes your relationship really uncomfortable or even stronger. We became best friends, and Brittany also became my work “emergency driver.”
In Brittany, I have found so much support in facing my health challenges, and Brittany says I have given her inspiration in hers. Both of us are trying to feel better, not be limited by our health conditions, and ultimately be happy with who we are and the lives we have.
When I decided to start this podcast, it was obvious that I needed Brittany and her hilarious jokes, practical tips, and life perspective on the show. Brittany has played such a huge role in my life since I met her, and I know you will learn as much from her as I have!
Want to learn more about us?
Definitely listen to Episode 1: Introducing a Dragon that Ate My Ovary, a hilarious episode in which we introduce ourselves (and all of our health woes!) and talk about why we started this podcast.