Endo isn’t the Endo-o Y’all: How Moving to Texas Changed My Endo Journey
Photo: Melissa Persia, Endo Fighter
by Melissa Persia
Before I knew “better,” before I had done any research or advocacy of my own, I thought I was one of the lucky ones. The ones who got diagnosed early and received the treatment to “cure” endometriosis! What I really found out was just how ill-informed most people are about this disease.
I was diagnosed in 1999 when I was 17. I was having severe pain with all my periods, pain between my periods, spotting, fatigue, bowel issues, irregular bleeding–all the earmarks that I now know point to endometriosis. With these symptoms in mind, I made my first-ever appointment with a gynecologist in my hometown in New Jersey. He was the doctor who delivered me, which should tell you a little something about how long ago he went to medical school. My whole family vouched for him, so of course I trusted him. When I told him about the pain, he did an internal exam, finding a cyst on my ovary so large that he could feel it with his bare hands. He sent me for an ultrasound and put me on birth control, saying that would ease my pain and shrink my cyst. It didn’t. We kept an eye on the size until my pain became unbearable. I told him we needed to do something. Growing tired of my constant complaints of pain, he finally agreed to surgery.
As I recovered from surgery, I did start to feel better–not so much pain or bloating or fullness. During my follow up visit, my doctor told me that he also found endometriosis on my abdominal wall. He said, “but don’t worry about it. I cut it out so it's all gone.” “Endo…what?” I asked. He told me, “Don’t worry about it. I took care of it.” According to him, I was lucky that I had that cyst. It allowed him to find the endo, cut it out, and free me from years of pain and infertility!
Photo: Melissa at a community event
At that moment, I was incredibly thankful, but being the science nerd I am, I decided to research this disease for myself. From the start, I read over and over that endometriosis has no cure. Confused, I thought, “but my gynecologist told me he cured me, that I was lucky. Maybe he knows more than everyone else.” I was thankful I had a doctor who was so knowledgeable. So I thought it very odd, and very concerning, when my pain returned 6 months later, and this time more intense than before.
I immediately scheduled another appointment. After another internal exam, the doctor said he didn’t feel a cyst so he didn’t know why I was having so much pain. “Maybe you have a low pain tolerance,” he suggested. Undeterred, I asked him some questions about endometriosis and the surgery he did since I had done a little more research by that point, and he again told me he took it all out. He said that I was fine and shouldn’t be in pain. He prescribed 800mg Ibuprofen, assuring me that would help with period pain. As he left the room he joked about how labor was so much worse; I should make sure to get an epidural when the time comes.
Unsurprisingly, the pain kept getting worse and worse and the ibuprofen did not touch it. I went back to the office to find the doctor’s demeanor toward me entirely changed. He accused me of drug- seeking before telling me I needed to go see a gastroenterologist. The abdominal pain could not be from anything to do with gynecology. He did everything right and I was fine.
Upset, disappointed, and not knowing what else to do, I took his advice to see a GI doctor. I got a colonoscopy, endoscopy, and an ultrasound. When I met with the doctor to get the results, he said he was surprised to find a very large cyst on my right ovary, and while they are normal, this one was so large that it was probably causing my pain and should be checked out.
Photo: Melissa with cofounders Denetra Bell and Alison Landolt
This started the cycle we are all too familiar with: find a new OBGYN, get offered birth control, still in pain, ineffective surgery, still in pain. Wash, rinse, repeat. I’ve heard all the lines too many times. “It’s gone! We took care of it! You’re cured!” Except, it’s not, you didn’t, I’m not, and I don’t know how much more I can take.
Nearly 13 years after my initial diagnosis, I finally found a doctor willing to stick by me. He understood my pain and knew enough about endometriosis to know he was not a specialist and that I needed to seek one out. He told me about some foundations and a symposium that was going on in New York that year. I was so excited to meet others like me, and to be validated felt like a weight was lifted. He worked with me on pain management and looking for groups I could join until his retirement in 2015. That was the year I moved to Texas. While I was very sad to lose him as a doctor, I learned through our relationship that I could fight for myself. He empowered me to walk away from the doctors who would continue to dismiss me in my journey ahead, and that it was ok to walk away in search of someone better.
One fateful day in 2017, while looking for things to do in Houston, my boyfriend and I stumbled across an event for a screening of “Endo What?”. I was really excited to go! The events I attended in New York offered me knowledge, but I needed a support base. I had tried to find or start one prior to moving to Texas with no success. There was a group of women at the Houston screening, amazing women who I connected with on another level due to our understanding of each other and what we go through day after day. We decided at that first meeting that something needed to be done for people just like us who need the support and need to learn how to advocate for themselves. Thus through many meetings, phone calls, strategic arrangements, the Endometriosis Foundation of Houston was formed.
Photo: Melissa Persia, Cofounder and Director of Fundraising and Business Development
This has been the most fulfilling venture I have ever pursued. I am so lucky to have found my people, and to form an organization that is dedicated to helping others like me. Bringing a screening of “Below the Belt” to Houston, in partnership with Baylor College of Medicine, feels like we’ve come full circle. It feels like a homecoming of sorts. Endo What? is where we began, and Below the Belt is where we are going.
I hope you will join us on March 4th at 1 pm for a special screening and Q&A session with some of Baylor’s finest. Together, we can build a stronger community. Together, we can be the change needed to break the cycle.
Melissa Persia is one of the co-founders of the Endometriosis Foundation of Houston. She currently serves as the Director of Fundraising and Business Development. She enjoys spending time with her husband and their cat and taking long trips camping in their sprinter van. She is also a co-host of a horror podcast called Imported Horror.