“The Tests Were Normal. I Was Not.”
What more than two decades with endometriosis taught one nurse about listening to patients—and trusting ourselves.
"The Tests Were Normal. I Was Not."
What more than two decades with endometriosis taught one nurse about listening to patients-and trusting ourselves.
For 68 days, I was in pain.
I couldn't sit comfortably. I had constant cramping. Something in my body was telling me that something was wrong.
I had already been diagnosed with endometriosis twice-once in 2012, when it was found on my bladder and colon, and again during my hysterectomy in 2019.
So when the pain returned this summer, I asked the emergency-room provider a very reasonable question: Could my endometriosis have come back?
I was told that because I no longer had a uterus, that was unlikely.
Yesterday, September 3, 2026, a surgeon operated on me.
She found endometriosis.
Again.
And she found something else: extensive pelvic adhesive disease involving my colon, pelvic sidewalls, bladder peritoneum, and vaginal cuff.
Today, for the first time in 68 days, the cramping is gone.
I'm sore from surgery. But the pain that brought me here is gone.
And that is why I'm telling this story.
Let me take you back to 1999.
I had my son Jacob just a month and a half after turning 21. Postpartum depression hit, along with increased menstrual flow and horrible menstrual cramps. Nothing was too bad for me to handle, but it was definitely worse than before Jacob was born.
In 2003, I had Kylee, and all hell broke loose. I would bleed through a super-plus tampon and a thick, diaper-like menstrual pad in an hour. I was miserable. The cramps were excruciating. I would pass blood clots the size of a clementine just walking from the toilet to the shower.
Then, as time went on, the migraines started, along with vomiting and a diagnosis of anemia. I had never experienced migraines before. When they hit, I had to remove myself from everything-a pitch-black room, complete quiet, and hours of sleep. Not exactly something you can do when you're a stay-at-home mom.
I started talking to my OB-GYN more and asking for help. We tried different birth controls, and while they helped with the cramping, the bleeding and migraines were still there. I started to think maybe I was the problem. Maybe I was overreacting. Maybe this was just how it was after you had children. I didn't know.
My mom did say she went through the same things I was going through, and it was just something we had to deal with as women. The one thing that stuck out to me was that my friends were not experiencing the same things I was every month, and they, too, had children.
As my kids grew older, I returned to the workforce and started working at their elementary school as a teacher's aide.
There is nothing more embarrassing than hearing, "Mrs. Greif, you sat in something."
No, I didn't sit in something. I was bleeding through my menstrual protection-and yes, I said protection, because I was using both a tampon and an overnight heavy-flow pad.
Teachers and teacher's aides can't simply use the restroom whenever they need to. Some don't even have bathrooms in their classrooms. Imagine knowing you need to change your tampon every hour and not being able to leave to do it.
I ruined clothes. I missed work. For seven days every month, my quality of life disappeared.
I was 25 years old when my symptoms became unbearable. For the next three years, my request never changed. I wanted a hysterectomy. Due to my age, they refused. Their reasoning? My age. What if I wanted more children? What if I divorced and my new partner wanted children? I was also told they didn't want to put me on hormone replacement therapy (HRT) at such a young age, so they finally offered to do a NovaSure endometrial ablation procedure instead.
In September 2006, I had the NovaSure ablation, and waiting for my period that October seemed like years. October, November, and December all came and went with no period. In September 2007, I had been period-free for a year. The best year ever. No missed days of work, no ruined clothes, no cleaning blood clots off the floor.
Occasionally, here and there, I would have a migraine, but it was not every month. I was able to once again enjoy life. Life was good.
Fast forward to December 2012.
I was finishing my first semester of nursing school and prepping for finals. I had menstrual like cramps. Ah hell. I am getting a period again flashed in my brain. Run to the bathroom. No blood. Buy pads on the way to work. Getting hot and sweating doubled over in pain. Thankfully, by this time I was working in the emergency room and my charge nurse sent me to a room to be seen. She thought maybe I had appendicitis. Labs were drawn, a CT was ordered and everything came back unremarkable. She sent me home and told me to rest up for my final the next day.
Getting hot and sweating, doubled over in pain. Thankfully, by this time, I was working in the emergency room, and my charge nurse sent me to a room to be seen. She thought maybe I had appendicitis. Labs were drawn, a CT was ordered, and everything came back unremarkable. She sent me home and told me to rest up for my final the next day.
The next morning, I was still in pain. When I got into the car, I could have cried.
But I had nursing school finals.
I took my finals standing up.
Afterward, I walked across campus to the main hospital.
They drew labs, did a CT, and again, everything was unremarkable. They sent me home. I went back to work that night, and the charge nurse sent me back to a room and ordered an ultrasound. She knew me well enough to know something was off.
The provider I saw suggested I be admitted, and since we did not have an OB-GYN at our campus, he had me transferred to another hospital.
I spent seven days lying in a hospital bed. I could not sit; it hurt too badly. I had X-rays, CTs, MRIs, and several ultrasounds. On the sixth day, the OB-GYN said something like, "I cannot find anything wrong with you. The only thing I can do is exploratory laparoscopic surgery, but I do not really want to do that. There are risks with surgery."
Well, I want you to.
There is something wrong with me, and I am not going home to two children and not be able to sit or drive them anywhere. She scheduled the procedure for the next morning.
Post-op, I went to the restroom, and while I was sore, I did not have any cramping. I was not sure what she did in there at this point.
I walked back from the restroom and sat on the edge of the bed. I looked at my mom.
"I don't have cramps. I'm sore, but I can sit."
Not long after, the OB-GYN came in, and she apologized to both me and my mom.
"You have endometriosis."
She handed me photos and explained that she found it on my bladder and my colon.
I went home later that day. Oh, and I still did not get a period, so far, the NovaSure procedure was working.
And then I lived happily ever after right…. nope. In March 2019, I noticed spotting. By then I had moved from Florida to Pennsylvania, and I worried that a new OB-GYN wouldn't understand everything I had already been through. I immediately requested my records and found a new provider.
She was surprised the NovaSure ablation had lasted nearly 13 years and suggested trying Depo-Provera. Within days of the injection, I developed headaches and abdominal pain, so we decided not to continue it.
All was well until September.
My boyfriend and I were going to hike the Pennsylvania Grand Canyon for my birthday. On the way there, I was nauseous and cramping. I felt a migraine coming on, and we cancelled the trip. We ended up in the ER. They did all the tests and came back to tell me I had uterine fibroids and needed to follow up with an OB-GYN.
I brought my records from Florida, and as soon as this woman looked at my records and my most recent ER visit, she said, "I think the best thing we can do for you is a hysterectomy." I could have cried. Finally!
She suggested we leave my ovaries to avoid early menopause, and I agreed. I was scheduled for a hysterectomy in October 2019. After the procedure, she told me she found endometriosis on my colon and bladder and removed it, which could have been part of my pain, as well as the fibroids.
I felt like a new woman. No pain. No cramping. No spotting. No headaches or migraines. Everything was great. Until June of this year. I woke up on a Sunday with horrible pain in my lower right quadrant, and as the day progressed, so did the pain. I waited on the couch for hours, and when I got up to use the bathroom, I could feel the pain radiating up my back. Ugh.
"Pyelonephritis-a kidney infection-was the first thing that came to mind because I'd had one before."
Off to the ER I went. The provider thought I had kidney stones and ordered morphine. It did not touch the pain. He ordered Dilaudid. It did not touch the pain.
The labs and CT came back unremarkable. He told me that I probably had a bad UTI and was ordering antibiotics and steroids. I questioned him about a recurrence of my endometriosis, and he told me I did not have a uterus, so it was not likely. I mentioned I still had my ovaries, and again, he told me that was far-fetched and maybe I had pulled a muscle.
I left feeling like a nutcase.
My body was telling me something was wrong. I was in so much pain I could not sleep. I made an appointment at 3:45 a.m. through my health portal with my PCP for the next morning.
She knows I do not schedule an appointment to see her just to say hi! She took one look at me and was like, "Girl! What is going on? You look miserable."
I told her I was miserable and felt like I was losing my mind. She ordered stat labs and another CT, thinking maybe I had appendicitis and it had not presented the day before.
Everything came back unremarkable, again. I asked her about endometriosis recurring and told her what I'd been told in the ER. She disagreed. She explained that endometriosis could still be possible after a hysterectomy and recommended that I see a gynecologist for further evaluation.
The provider who did my hysterectomy moved out of state, so I reached out to the PA at that office. The response I got back from the PA echoed the ER provider, so I started looking for a new provider.
The dates I started looking for a new provider were June 29 and 30, 2026. The first opening I found with a Minimally Invasive Gynecologic Surgery (MIGS) specialist was August 12. I took it. Then the next place I called was August 18. I took that one, too. I did not want the first one to cancel or reschedule and then have to wait another one to two months. I was desperate for answers.
I saw the provider on August 12 and cancelled the one for the 18th that same day. I told her what had been going on and that I was miserable.
She gave me lots of options: pelvic floor therapy, a women's midlife health group, surgery, and suggested that if we went in to look for endometriosis, we should consider removing my ovaries, too, as a preventative way to hopefully keep this from happening again.
She explained that even after a hysterectomy, endometriosis can persist or recur and that there is no guaranteed cure. She pointed out that I had made it seven years from my first diagnosis to my second, and nearly another seven years before symptoms led me back to her office.
After discussing my options with her, including the risks and benefits, I decided to move forward with surgery and removal of both ovaries. I opted for the surgery to remove my ovaries.
On September 3, 2026, surgery finally gave me an answer. My surgeon documented pelvic adhesive disease, with adhesions involving my colon, pelvic sidewalls, bladder peritoneum, and vaginal cuff. She also found nodular endometriosis on both uterosacral ligaments and superficial endometriosis in the posterior cul-de-sac and on the colonic epiploica. The lesions were excised, the adhesions were freed, and both ovaries were removed.
I did not have a uterus. I did have endometriosis.
I have spent more than two decades learning this lesson, first as a woman and then as a nurse: tests are important. Physicians are important. Medical expertise is important.
But so is the person living inside the body being evaluated.
You are allowed to keep looking for someone who will listen.
I did.
On September 3, a surgeon found the endometriosis I had been told was "far-fetched."
On September 4, for the first time in 68 days, I woke up without the cramping that had consumed my summer.
Sometimes advocating for yourself isn't about proving that you're right. It's about refusing to stop looking for the answer.
