Perspective from 20 Years of Experience

The other day, I received an email from the Endometriosis Association. It read:

Thinking back to the moment when you were first diagnosed with endometriosis, what do you wish you had known? This is the question at the heart of the “What I Wish I Had Known When I Was Diagnosed with Endo” initiative, which will allow you to share your valuable insights with people who are newly diagnosed. Sharing your perspective can help someone who is struggling with the disease and let them know they are not alone.

Participate in this project by creating a 30-second video explaining one thing you wish you had known at the time of your diagnosis. We will post the videos on the Association’s YouTube channel in their full forms; however, some might also be sampled for a longer “overview” video.

I’ve been living with endo for over 20 years; of course, I wanted to participate. I thought about what I wanted to say for the entirety of my hour-long drive home. There are so many things I wish I had known when I was first diagnosed. How would I narrow it down to only one thing AND condense that one thing down to 35 seconds? (The submission guidelines gave us an extra five seconds.) I finally narrowed it down to this: You have to be your own biggest advocate.

I had to stop at Walgreens to pick up a script before I went home, but I couldn’t wait until I got home to film. I parked the car at Walgreens and filmed my video right there in my car. I knew what I wanted to say, and I had to say it right then. Condensing it to 35 seconds was hard–I had to retake the video six times–but I did it. After I filmed, however, I knew I had to write about it, too. There was so much more to say than 35 seconds allows.

I was officially diagnosed with endo when I was 21 years old (which was 20 years ago) after six years of periods with debilitating pain, nausea, vomiting, and bleeding through my clothes because my menstrual products couldn’t keep up. There are so many things I wish I had known when I was first diagnosed, but the biggest one is that you have to be your own biggest advocate.

No one told me how uneducated doctors could be when it comes to endo and treating it. I was the one who had to learn this after I spent about three years with the doctor who diagnosed me trying birth control after birth control after birth control with no results, because he told me the only way to “cure” endo was birth control or pregnancy (spoiler: there is no cure). He highly recommended pregnancy from the beginning. I was 21 and in an incredibly abusive marriage. No way I was bringing a child into that. Not to mention the fact that I knew from a very young age that I never wanted children. I spent years begging him for other treatment options and being told that there were none. The internet of 2003 was not the internet of today. It was harder to find reliable sources of information on my treatment options. When he wrote me a script for opioids and then basically wrote me off, it was my mom who said to me, “Why don’t you see someone else and get a second opinion?” This was a revelation for me. I had no idea that was an option. So began my journey of getting a second opinion and then a third and then a fourth and then a fifth and so on–you get the picture.

No one told me that too many doctors think endo is just a bad period and will call you “dramatic.” I had to learn how to stand up for myself and actually say, “No. No, this is not just a bad period. This is debilitating pain that affects me even when I am not on my period.” I had to learn that I was not dramatic, but I damn sure could be if the doctor didn’t want to listen to me.

No one told me how dangerous birth control could be. No one told me that birth control was not a good option for every endo patient. They told me it was the “standard of care.” They told me that “it works for most patients.” And I listened to them, because doctors are supposed to be the experts, right? Wrong. And because of them, I spent about 10 years on every kind of birth control that existed back then, the entire time thinking that I was bipolar because of how those meds made my moods shift so suddenly and in such extreme ways. By that time, luckily, the internet had evolved, and I was able to do my own research. I discovered that while birth control can be effective for some endo patients, it is not the end-all be-all for endo treatment. I learned that hormonal birth control can make your moods shift like mine did. I saw another doctor who confirmed that hormonal birth control was not a good option for me because–guess what–my body doesn’t respond well to hormones. What that doctor couldn’t do, though, was offer me any other treatments. I was the one who took myself off birth control.

I spent years having surgeries that are still, in the United States, considered “standard of care,” even though they have been proven to be less effective than other types of surgery. I have lost count of how many times doctors have performed laparoscopies on me in which they go in and basically burn off the endo. The chances of it growing back after this type of surgery is high, hence my many surgeries. In the late 2010s, I finally learned about excision surgery and finally had a modicum of something resembling hope. But that hope was immediately dashed after I learned that most insurance companies will not pay for this surgery. I was in the bathtub during that initial conversation with the endo clinic that would do the surgery. I got off the phone and considered drowning myself.

I was out of hope. A few weeks later, I got a phone call asking me if I was interested in being part of a clinical trial for a new endo drug. Their timing could not have been better–I was desperate. So, I agreed to participate in the trial. Big mistake. After maybe two months on the drug, I knew that I had the actual drug and not the placebo, because my moods started to shift again. I was so desperate for relief that I hadn’t realized that what they were testing was a new hormonal drug. I had to end the trial early. My desperation returned.

I am lucky, though. In 2018, my late husband had mentioned my plight to his parents, and they offered to pay for the excision surgery. I am forever grateful to them. That surgery gave me years of relief that I thought I would never see. Has the endo returned? Yes. But even now, even though the pain is awful, it is still less pain than I had before the surgery.

But here, we come back to advocating for yourself. I had to advocate for me leaving the trial. They tried so hard to get me to stay. “You don’t know for sure that you have the hormonal drug,” they told me. “We don’t even know which one you’re being given.” But I know my body, and I know how my body reacts to hormones. I wasn’t being dramatic. “Is there anything we can do to get you to see it out to the end?” I told them no.

I had to advocate for me receiving the surgery. I had to seek out the Center for Endometriosis Care and go through their very in-depth application process for them to even consider seeing me and taking my case. They were lovely, by the way. Dr. Arrington was the first doctor to ever make me feel heard, to take my pain seriously, to consider treatments that do not work for me, and to include me in the plan of care. For once, I didn’t feel like I was fighting for care. Of course, when I went back to my regular doctor for follow-ups after the surgery, the first thing he recommended was birth control. I found myself fighting again.

And that’s the thing. No one tells you that you’re always fighting. While your body is fighting you, you’re fighting to be heard, to have someone take you seriously, to get even a little relief.

You’re going to be tired. I know you are. But you know your body better than anyone, and you are going to have to be your own biggest advocate.

Much love,

Robyn

Endometriosis Resources

Of course, there are many more than I’ve listed here, but I think these are good places to start.

• Endometriosis Association
• endometriosis.org
• Endometriosis Research Center
• Project Endo
• Below the Belt (film)
• Endo What? (film)
• Center for Endometriosis Care
• Endometriosis Foundation of America

Photo by me. All rights reserved.