Iatrogenic Endometriosis a Cesarean Risk
I was just 30 years old when a complicated pregnancy led me down the path of a cesarean section delivery. What I thought was a common and safe practice has now left me with lifelong pain, a permanent disability, and over $200,000 in post-operative medical costs. Through my painful journey, I discovered the many risks of cesarean deliveries and uncovered a serious, hidden cesarean complication that no one in the medical field wants to talk about: iatrogenic endometriosis.
This is my story.
Going in Blind
My last month of pregnancy I had kidney stones which led me to the hospital on May 11, 2010 with kidney infection with a high temperature. The doctors recommended that I elect for a cesarean delivery to save my kidney and increase my chances for a healthy baby delivery. I proceeded with my doctor recommendations without asking too many questions. I assumed my doctor knew what was best for me.
On May 12, 2010 I was blessed with a beautiful, healthy baby boy and following the delivery I was able to resolve the kidney stones and health issues which had made the pregnancy so difficult. I thought all the pain was now behind me and looked forward to the many adventures I would soon have with my growing family. But something wasn’t right…
Is This Normal?
Once home from the hospital, I started feeling like I wasn’t healing properly. I was experiencing nearly constant aching abdominal pain, swelling and bloating, and lower back pain. My left abdominal muscle felt weak and I had trouble rising from a sitting position.
I expressed concerns to my doctors. The doctors told me not to worry, a lot of women have trouble with the recovery from Cesarean deliveries and that any lump I was feeling was probably just scar tissue hardening. I trusted their opinions but I wasn’t convinced – the pain was just too great. As I spoke with friends who had cesarean deliveries and started to research more about the topic, I grew increasingly concerned that the pain I was experiencing wasn’t typical. Nearly 4 months after the delivery, I visited the emergency room with intense abdominal pain, hip and low back radiating pain and stabbing sharp pain in my left abdominal muscle. I described the pain to be as intense as passing kidney stones but not similar. I told them that I feel something is wrong with my abdomen muscle. I even joked “did you leave a sponge in there?” Doctors asked me about the past few days’ activities, and when did the pain start. I told them the pain started two days prior and have intensified; I was in severe pain, I haven’t been doing any type of physical activities lately. I said I first noticed the sharp stabbing pain in my muscle was when I was getting out of the car. Doctors tested my blood and urine for kidney stones but found no evidence and discharged me with a diagnosis of “musculoskeletal pain” from twisting getting out of the car.
I knew from the start, something went wrong…
I knew some of the potential complications, like bleeding and infection, which were briefly presented to me. From the first few weeks after my cesarean I knew that there was something wrong with my abdominal muscle. I kept searching for symptoms and signs of muscle being positioned wrong, infection in the muscle, and the possibility of doctors forgetting a sponge or instrument in my abdomen. As the weeks turned into months and I was still experiencing pain I knew something was definitely wrong. I noticed a lump growing beneath my skin in the area just above my cesarean incision scar. Any daily activity that involved my abdominal muscle, such as exercising, coughing, sneezing, and laughing, would create discomfort and pain. The situation was growing increasingly concerning and I was becoming depressed and anxious.
I scheduled multiple follow-up appointments with both my OB-GYN and primary care physician to discuss the new symptoms and growing lump, but both doctors continued to dismiss the lump. They reassured me that my body had just changed after having a baby and that the lump was the result of hardening scar tissue or even stubborn fat. My OB-GYN recommended I see my urologist to investigate my kidneys and also a plastic surgeon to pursue the issue further. I was told that I’m a beautiful, skinny woman, with no stretch marks and no lose belly skin. A little bump above my cesarean scar and some inflammation are nothing more than a cosmetic issue that I will have to live with. To stop “stressing too much” and to just be thankful I have a beautiful baby at home. It was hard for me to accept the doctors’ recommendations because I was in far much pain.
The Pain Gets Worse
By the fall of 2011 my frustration was growing. The pain I was feeling was affecting my ability to work, socialize and play with my new baby boy. None of my diagnoses seemed to be close to any of my symptoms. Frustrated, I started keeping a daily journal to see if I can create a pattern of my pain. I continued visiting my primary physician, OB-GYN about the growing lump and my monthly symptoms. The doctors kept telling me that my symptoms are not in any way related to the lump above my cesarean incision scar. Doctors even suggested that might have “Munchausen syndrome” and was feigning the illness. Wanting to eliminate all the diagnoses that the doctors have given me so far, I went beyond what anyone would do, to rule each one out. By the fall of 2012, my symptoms and lump increased and my health was slowly deteriorating. Few more ER and doctor visits and still my concerns continued to be dismissed. They suggested I should have neurological tests done so we can see if my brain is getting false pain symptoms. They expressed their concern; that they can’t find anything wrong with me, and still I’m continuously at the doctor’s office and end up in the emergency room.
A Possible Solution
Growing increasingly distressed by my symptoms and getting little support from my doctors, I turned to the Internet to try finding an explanation for my growing pain and lump. Why none of doctors ever seemed concerned to figure out what my lump was frustrating me more than ever. So I reached out via an online video conference and called an OB-GYN in Europe. I described my abdominal intense monthly symptoms and the growing lump. I told him that I only started having symptoms and lump after my cesarean. I had no previous symptoms or lump, I currently had or ever had pelvic pain, normal menstrual cycle and no fertility problems.
After listening to my story, the doctor said that my symptoms sounded like “incisional scar endometriosis” also referred to as “iatrogenic endometriosis”. I had never heard of this condition before. The doctor explained that sometimes during a cesarean section, the endometrium tissue can be implanted outside the uterus. This can lead to the sudden emergence of endometrioma masses in a woman who has not experienced any pelvic endometriosis prior to her cesarean.
The doctor recommended having an ultrasound in the abdominal muscle area. Since my US doctors have been only focusing on my pelvic area, never of my abdominal wall region they kept on missing it.
Knowing Where to Look
In February of 2013, nearly three years after my original cesarean section operation had occurred; I visited my primary care physician again and demanded an ultrasound. The doctor was hesitant to order the test but seeing me resolve he referred me in for testing.
Finally, an ultrasound was performed on my abdominal region with the results exactly as the European doctor predicted: I had a mass in my left rectus abdominal muscle. A biopsy and a CT scan of the mass were ordered and the results confirmed that I now had an endometrioma mass in the rectus muscle or iatrogenic endometriosis brought on from cesarean. After more than 30 doctor visits in 32 months I finally had an answer!
A Diagnosis Is Only the Beginning
Finally discovering a diagnosis brought me a great relief and affirmation that my pain and concerns was not just “in my head” as so many doctors had tried to convince me. Unfortunately, the fact that it took several years to achieve the iatrogenic endometriosis diagnosis left me with even more battles to fight.
Leaving my condition untreated and ignored for so long had let the endometrium cells grow and extend over my muscle. I would now have to undergo significant abdominal surgery once again to remove the mass that caused me so much pain, money and mistreatment by all of my doctors.
Surgery and its Effects
In August 2013, I underwent surgery to remove the endometrioma mass in my left rectus abdominal muscle. Once in the operating room, doctors had to do a radical excisions of 8 centimeters of my left abdominal, muscle sheath, vein complex and epigastric artery. They repaired the muscle sheath with a 10 x 16 cm of FlexMD mesh.
While this surgery was necessary to remove the growing mass from my abdomen, it left me with permanent life changing issues. I now suffer chronic low back and buttocks pain, a permanently herniated stomach, making any actions that require abdominal strength, like exercising or lifting my own child nearly impossible.
I face the possibility of future surgeries to reinforce the mesh and fascia which could easily break at any moment by lifting heavy objects or straining the area. Even simple actions, like breathing, coughing, talking, walking standing, lifting, pulling, carrying and arising from a seating position will remain a challenge. I can’t pick up my son or do basic activities I enjoyed in the past.
I’m left with huge medical costs incurred searching for an answer, current treatments and future ones. I’m currently searching to find a doctor to help me with my current condition (missing the 8 cm of my abdominal rectus muscle). And perhaps most devastating for me, the results of the surgery has made it impossible for me to carry another child. My dream of growing my family and giving my son the little sister he always asks for are gone now.
We all can learn something from my story. My endometrioma mass in my rectus muscle was the direct implantation of my uterus lining during my cesarean. There was nothing in place to prevent this event from happening or to diagnose me at earlier stage.
My doctors completely ignored my lump and symptoms. They refused to believe me and all along I was pointing at the problem. They didn’t want to hear it. Doctors thought they knew better but nobody knows my body better than I do. Doctors failed to provide me with the care I deserved and paid for.
Thank you for reading!
While I just started on my journey to raise awareness to this issue, I’m committed to making sure that my story doesn’t happen to any other new moms.
We hold the power to help prevent and change the outcome for many women! Please help me bring awareness of iatrogenic endometriosis an under-appreciated cesarean risk!