ENDO WARRIOR - I went into this experience with a lot of hope…read more
I had struggled with symptoms of endometriosis for well over a decade, and when I first consulted with Dr. Paul MacKoul, I honestly felt like I had finally found my saving grace. I felt heard. I felt believed. He reassured me that what I had been experiencing was real and not "all in my head," and he felt strongly that I had endometriosis, adenomyosis, or possibly both.
At the time, I wasn't ready for a hysterectomy. My MRI had not shown adenomyosis, and I didn't feel comfortable removing my uterus without a clear reason. So in April 2025, I agreed to laparoscopic surgery to look for and treat endometriosis.
I was told afterward that some endometriosis had been found and removed and that everything had gone well. My operative report documented only Left sided endometriosis and a fibroid.
My recovery initially went very well. I truly thought I had finally turned a corner. Then the pain came back.
My bleeding became significantly worse, and I couldn't understand why I was still feeling so bad after surgery. I contacted the office again, and after discussing my symptoms with Dr. MacKoul, he recommended another surgery. This time, he believed adenomyosis could be contributing to my symptoms and recommended a supracervical hysterectomy.
So only about six months after my first surgery, I went back for a second surgery in October 2025.
After that surgery, I was told that more endometriosis had been found and removed that had not been seen during the first surgery.
The pathology from that October surgery confirmed endometriosis in the right pelvic sidewall, left pelvic sidewall, and left uterosacral area. Also, fibroids on uterus but no Adenomyosis.
Despite having now undergone two surgeries, with removal of my uterus and tubes, I continued to have significant pelvic pain. The pain became more constant and was affecting my everyday life.
Then the pain became even worse.
I contacted Dr. MacKoul again, and this time I was told there was concern that I could be experiencing ovarian torsion and that I should consider emergency surgery. I decided to wait for an ultrasound first. Thankfully, the ultrasound showed normal blood flow and no torsion.
At that point, I knew I needed another opinion.
After two surgeries with the same surgeon in less than seven months and still being in significant pain, I couldn't shake the feeling that something wasn't right. I sought out another surgeon, and in June 2026--just over seven months after my second surgery--I underwent a third surgery.
What was found during that surgery left me with more questions than answers.
The surgeon documented extensive pelvic adhesions, with bowel and multiple loops of small intestine adhered throughout the pelvis. Both ureters were surrounded by significant retroperitoneal fibrosis and required complete ureterolysis. Endometriosis was found on both pelvic sidewalls and near the bladder. The surgeon spent extensive time freeing the bowel, opening both retroperitoneal spaces, freeing both ureters, and excising the endometriosis.
The pathology confirmed endometriosis involving fibroconnective tissue on BOTH the left and right pelvic sidewalls.
This is the part I struggle with the most.
The first surgery documented bilateral disease and right ureter involvement and stated that all disease had been resected. Six months later, the same surgeon performed my second surgery and again documented bilateral endometriosis and complete removal of retroperitoneal implants. Yet less than eight months later, a different surgeon found significant bilateral retroperitoneal fibrosis, extensive adhesions, and pathology-confirmed endometriosis on both pelvic sidewalls.
I understand that endometriosis can recur and that no surgery can guarantee that endometriosis will never return.
But after reading my own operative reports and pathology reports, I am left with very difficult questions.
Was this truly new/recurrent disease? Was some of the disease missed? Was some left behind? Was the extent of the disease underestimated during either of the first two surgeries?
I don't claim to have the medical expertise to answer those questions. I only know what happened to me, what my records say, and what was ultimately found during my third surgery. And after everything I've been through, I believe I have every right to ask those questions. I went into this process after more than a decade of pain believing I had finally found someone who would help me. Instead, I have undergone three surgeries, dealt with continued pain, missed time from normal life, endured the physical and emotional toll of repeated procedures, and am still trying to understand how I got here.
I give 2 stars because on a positive note the postop nurse was absolutely AMAZING and so caring.
It felt rushed with CIGC & was not made aware of out of network insurance.