My Endometriosis Diagnosis Journey
I have at least 8 blogs sitting there in my draft folder that I've been excited about writing, but this story I'm here to tell today is why it's taken me so long to get another blog out. This week I was officially diagnosed with endometriosis. After years of various issues, medications, struggles, and pain I finally have a definitive diagnosis to guide me towards finding relief. That being said, I don't suspect this blog post is for everyone. I am writing it for those who are experiencing the same sorts of pain, symptoms, and struggles that I have and can find comfort in knowing what steps they can take to hopefully get answers. (Or for folks that are just curious about my life and story I suppose.)
The History
When I was a teenager, I had plenty of health issues as it related to my menstrual cycle. I had multiple ovarian cysts rupture, incredibly painful periods, trips to the emergency room, and more. I was put on birth control around then and always had a terrible time remembering to take the pills or even understanding what it was doing or how it helped. In time, it became a natural part of my life -- being absolutely miserable on my period and having to shape my life around it. As I got older, and had more control over my medical care, I was able to see a better gynecologist who was truly dedicated to helping me navigate this awful experience. He was the first to tell me about endometriosis and that he suspected I had it. Back then, it was believed the only way to diagnose endometriosis was to have surgery and look around for it. The doctor told me that a simple option would be to use the Nuvaring for a bit and see if it helped. Over time, he encouraged me to start skipping periods by taking the Nuvaring frequently. This worked for a while in reducing my period related issues, but then I started experiencing pain and firmness in my breasts. It grew to be so much that I had to stop taking the Nuvaring for a while.
Once my lovely gynecologist in Austin retired, I was forced back onto the market trying to find answers and help to no avail. When I moved up to New York City, I continued to bounce around between different doctors and eventually settled back on the Nuvaring again, but this time with a changed schedule of 3 months of skipped periods and one month of having a period in order to try to avoid the breast pain and minimize the endometriosis damage and discomfort. Unfortunately, in the past 6 months, I began to experience some of the worst periods I've ever had. Ones so bad they reminded me of my trips to the emergency room as a teenager for the ovarian cysts. I was devastated to be completed trapped at home within my flesh vessel suffering continuously.
The Experience
For me, not only is the pain awful, but the forced limitation. If you get stuck with a terrible day in an unpredictable way, you lose your agency with your free time. You still have to show up to work, school, wherever and keep on keeping on. But how can you crack a smile when you feel like your insides are being ripped apart? Not only that, but it feels like pressure and pain pulling on your other organs. Your trips to the bathroom can also be quite painful and... well... eventful. My periods can be extremely heavy, the cramps can be unbearable, and sometimes I don't even feel strong enough to walk.
So, you lie there on the couch with a heating pad and plenty of pain meds just begging, hoping, and wishing it would pass -- or worse -- you're stuck at your work desk, having to grin and bear it through a meeting while your insides feel like they're mired with barbed wire.
Getting the Diagnosis
For the longest time, I was fine enough with expressing that I had "suspected" endometriosis and a history of ovarian cysts. But, as my periods started getting worse again, I was hitting my limit. Enter my lovely dietitian, Laura Iu. As someone who had also suffered from endometriosis, she was able to relate to me and help me navigate getting help. With her encouragement, I went back to my current gynecologist armed with confidence and information. My gynecologist suggested we start with an MRI and potentially start an endometriosis specific medication. It was the first time hearing that endometriosis could possibly be diagnosed with an MRI. I was nervous because either answer would feel bad in a different way. Getting the diagnosis would be helpful but upsetting while having an inconclusive MRI would feel like maybe everything was in my head. But, that's the thing! You can still have endometriosis even if it doesn't show up on an MRI.
Days went by and my doctor called to give me the news: there was definitive proof that I had endometriosis in 3 places within my pelvic area. To imagine just how bad it had to be for it to show up on an MRI in three separate places was shocking. As I mentioned before, I was relieved to finally have a solid answer but also terrified of what that would mean for my future.
My doctor has been working with me to get me set up on some medication; however, United Healthcare decided to deny my authorization for the medication so that is where we sit today. A diagnosis, but no current treatment.
In Conclusion & Next Steps
Marching into any health journey is terrifying. You have to have fight for yourself, trust and confidence in your experience, resilience to keep going, willingness to learn, ability to adapt, time, energy, and patience to get through it all and not to mention, as an American, the damn money to do it. And here I sit with a terrible insurance organization doing everything within it's power to make my life difficult. So what happens now? What's next?
Well, my first step is to take a day of rest. I've been fighting and dealing with the pain at the same time -- so today I'm taking the day to feel my feelings, write them out here, and rest. After today, I will pick up the fight again. I will search for an endometriosis specialist within the city that can help me navigate this new perspective that I have. There are a few options for treatment like surgery, hysterectomy, medications, and more. What's important to me is to find the best right fit for me specifically. I want to understand details and make an informed decision. Once I know, I'll do my best to circle back here and write about what I learn and what direction I take. So for now, I'll rest, but tomorrow I'll fight.
So, if you too are suffering from endometriosis, I would love to hear from you. What did you do? Where are you in your journey? Any information or recommendations that you have? And if you suspect that you might have endometriosis, I hope this post helped validate your experience and gives you some encouragement to fight for yourself. I don't have a perfect happy ending, but the more visible this issue becomes, the more help we can all get.
Reccomendations
I'm still young in my exploration of endometriosis, but I want to give you the same information that I have. Check these folks out and see if the information helps you. And if you have additional recommendations you think I should add, please let me know!
- My Amazing Dietitian Laura Iu and her amazing Instagram: Laura is the reason I finally buckled down and started seeking more explicit help. She tells about her own endometriosis journey and encouraged me to get better help. I went from accepting my pain and suffering to actively seeking answers and support. Additionally, she has helped me navigate many crazy changes in my life from dental problems to managing prediabetes. She has been, far and away, the most helpful practitioner I've ever had. I cannot recommend her enough. Having a dietitian has radically changed my life for the better. Whether it's diet or endometriosis related, Laura is well worth the follow!
- Dr. Melissa McHale was recommended to me via one of my cosplay connections. Her videos are helpful, fun, and informative. She breaks down the various symptoms and treatments in a way that is easy to understand.
Wrap Up
So that's where I've been: in the endometriosis trenches. I have every intention of putting out more posts, getting back to my activism, and exploring more fun topics. I'm hoping my next posts will involve some of my pixel art too! Thanks for reading :)
One last thing: oh my god we literally need project managers for your health. That feels like a service everyone could use. Shouldn't that be your primary care doctor? Or perhaps someone at that office? It feels like we just need someone to keep track as well as help find next steps. There has to be a better way!!!