Excruciating Pain – My Story with ENDOMETRIOSIS

My Story with ENDOMETRIOSIS  by Maria Elena Basile, CSN, BSN, RNBC

 As I reflect on life as a young pre-teen girl, I remember thinking something was wrong with me.  I wondered  why most of the girls in my grammar school class had already gotten their periods, as I still waited desperately for mine to “arrive”. I eventually entered high school feeling like a little girl amongst young women.  It wasn’t until mid freshman year that it finally came.  While most girls complained of its inconvenience, I rejoiced in my newfound womanhood.  I zealously carried around my sanitary napkins, feeling so proud of myself for learning how to utilize them.  This of course, was a blessing; one which I had been eagerly anticipating, or so I thought…

By sophomore year in high school, I was experiencing a phenomenon, which was completely foreign to me-  pain. EXCRUCIATING PAIN.  The kind of pain you can’t even label on a pain scale because it goes beyond the numbers 1-10.  As I looked around at the other girls in school, I noticed that they were not experiencing what I was.  In fact, I didn’t hear anyone else complaining of such pain during their menstrual cycle. I began suffering from severe cramps every month. The blessing I waited for, had become a curse. Once again I felt something must be wrong with me.  I told my mother, my friends, and my school nurse.   Being an immigrant from rural Spain, my mom gave me emotional support and hot teas to ease my monthly agony, but did not coddle me by any means.  My friends joked with me that I wasn’t allowed to go out with them during that time of the month unless I took my Midol.  The school nurse reprimanded me for missing school time if I went to see her. She would give me 2 Tylenol tabs and send me back to class ignoring my cries for help.  There were many days where going back to class was just simply impossible.  These were the days I spent skipping class and hanging out in the girls’ bathroom, or staying at a friend’s house.  However, the hot water bottle became my real best friend.  I was labeled a “bad student” and a “bad kid” by some, I assume.

Throughout my high school years, I continued to suffer from very painful & irregular periods; heavy bleeding; constipation; rectal pain; pain when urinating; headaches; bloating; fatigue; nausea; and back pain. Although I now met other girls who had “bad cramps”, it was rarely discussed in detail.  I still felt as if no one around me felt as I did.  Countless people told me to “get over it” and “toughen up” because “everyone has cramps”. “What the hell is wrong with me?”  I pondered.

At age 16, my mother took me to my Pediatrician who prescribed Anaprox (an anti-inflammatory pill for the pain) upon my request. Diagnosis: Dysmenorrhea.  A colleague had given me one of hers after seeing me crying in the school bathroom stall. The pill took my pain away and I wanted it for myself.  This medication seemed like it was heaven-sent at first, as it enabled me to get out of bed on most period days and make it to school.  It was somewhat helpful for about 5 years, and then suddenly, it just stopped working.

It was at that time that I had my first GYN appointment. I was diagnosed with Dysmenorrhea once again; which basically means painful menstruation. I was in nursing school during the next few years of countless trial and error prescriptions. I was given several different birth control pills that would regulate my periods and ease some of the pain, yet I never felt “right”.  I mastered the art of ‘Disassociation’, and learned how to compartmentalize my pain. I simply put it away, somewhere else, to deal with later. But I did not deal with this incredible monster in my life.  Somehow, I managed to graduate as the class Salutatorian, despite my shabby academic high school past. The effectiveness of the hormonal drugs was always short-lived. I could never be without high doses of Ibuprofen and a heating pad during my period.  Some days, nothing worked at all and I was unable to function, even bedridden.  I can’t begin to list all the school days, social events, family obligations, etc. that I have missed because of my “horrible periods”. I wondered why God would do this to me, and prayed for him to “fix whatever was wrong with me.”  Sadly, things went from bad to worse…

To outsiders, it appeared as if my life was great. I began working as a Registered Nurse and absolutely loved my profession. I went back to school to attain my BSN and graduated as the class Valedictorian.  I later became certified as a Psychiatric/Mental Health nurse and started taking graduate classes. I had a close group of girlfriends and a loving boyfriend. No one could imagine that on the inside, I was falling apart.  Again I concluded that something was wrong with me.  I was having pain during and after sex. My friends looked at me as if I was insane when I tried to explain this to them. They couldn’t relate. I kept this bottled up inside for years; even trying to ignore it altogether. It only grew worse with time, and destroyed my romantic relationships in the future, including my marriage. I disassociated much of the pain away, but the issues escalated. After many failed attempts to get pregnant with my husband, I felt hopeless. Emotionally, this took a toll, and I began to disassociate from him as well.  The sense that ‘something was wrong with me’ was a constant. I felt different; weak; defective; overly dramatic; and sad.  I believed I had a low tolerance for pain.  I believed what ignorant people told me.

I saw a total of 5 gynecologists in my lifetime.  No one ever mentioned the word Endometriosis.  In fact, while in nursing school, I believed I met the criteria for a diagnosis of Endo.  My doctor at the time thought I was being a “typical nursing student” and feeling paranoid because of my studies.  Deep down, I knew there REALLY was something wrong with me, but it seemed that no one would listen.  I went to other doctors as time passed, hoping someone would find something, but nothing ensued.  I saw the last gynecologist in August of 2012, at a prestigious medical facility in Summit, NJ.  I was well prepared for my appointment and brought with me a list of my history and schedule of my periods.  “This time will be different“, I thought. I was older now and ready for answers. I explained my symptoms and all the pain I had felt for so long. I told her I believed I had Endometriosis. She appeared annoyed with my lengthy lists and explanations. An ultrasound was done which “showed nothing abnormal”. Blood work was normal. She told me “there was nothing wrong with me” and that I may be “depressed.”  She looked at me and said, “you do not have Endometriosis, or uterine thickening would be visible on ultrasound.” She also acted like I was insane, and after that visit I was starting to believe it.  Diagnosis- CRAZY.  This is how I went through life feeling for many years anyway… 

It was in September of 2012, when I received a flyer in the school mail.  I am a now a certified school nurse in a high school in Jersey City, NJ.  The flyer was for an educational conference on Endometriosis. I didn’t even bother reading it because these workshops are usually during the week and expensive. For starters, I can’t imagine taking off a school day for anything other than illness or an emergency.  So in the trash it went.  Hours later, I noticed a butterfly looking up at me as I walked by the recyclable bin. (I love butterflies).  I pulled out a paper with a butterfly printed on it.  It was the workshop invite so I read it.   To my disbelief, it was on a Saturday AND IT WAS FREE! AND PADMA LAKSHMI (Host of Top Chef) WAS GOING TO BE THERE! Now I KNEW I HAD TO GO! I had to Google the sponsor- the Endometriosis Foundation of America, because I had not heard of it prior. I saw that Padma Lakshmi was the Co-Founder of this organization because she herself was an Endo sufferer.

On September 29, 2012 I attended this conference for school nurses at Lennox Hill Medical Center. It emphasized the vital role school nurses have in detecting Endometriosis in young girls. I remembered how coldly my high school nurse treated me, when I would run into her office crying from cramps. I listened to countless stories of women who were continuously misdiagnosed, ignored, belittled and depressed. Some had been addicted to pain medication; many were incapable of having children. I listened to Padma share her own painful story with Endo. I cried and felt great empathy. At that moment, I knew for sure I had it too. In fact, I had known all along.  I then heard Dr. Tamer Seckin, M.D., gynecological surgeon at Lennox Hill Medical Center, speak of this complex and misunderstood illness. As the president and founder of the Endometriosis Foundation of America, he is a leader in detection, treatment and advocacy of Endometriosis. He is also the physician who operated on Padma, ultimately saving her life. I immediately decided I wanted to see him as a patient…

On November 12, 2012, I had my first appointment with Dr. Seckin. Within minutes of my exam he found a cyst on my left ovary via ultrasound and detected a need to speak with me further. I asked him if there was something wrong with me.  He replied, “Yes, I believe something is wrong with you. ” My mother, best friend and I met with him. He asked me when I wanted to schedule laparoscopic surgery.  I was shocked.  “Surgery for what?” I asked him; thinking he probably meant excision of the cyst.  “For removal of Endometriosis“, he replied. His words felt surreal to me. “I have it??” I asked.  “Well, you are telling me you do”, he stated.  “And you believe me?” I questioned.  He said, “Of course I do”.  I couldn’t believe his demeanor, bedside manner and trust of my knowledge.  But what if I was wrong? What if I was crazy? Could 5 doctors be wrong and me right? What makes me think I know more?  I had so much self-doubt…

Nonetheless, on December 14, 2012 I underwent surgery to definitively see if I had Endometriosis and to remove my left ovarian cyst. What would have been a half hour to hour long procedure took 4 hours. I woke up in the recovery room of Lennox Hill Medical Center and saw my mother standing by my stretcher.  I immediately asked her if I had Endo, and I saw her eyes water.   “Yes, yes, you did, but it’s gone now…it’s over!” she shouted. 

I soon learned that I had Stage 3 Endometriosis in my bladder; ureters; intestines; rectum; ovaries; cervix, and elsewhere within different areas of my abdominal cavity.  Dr. Seckin had removed an Endometrioma (blood/endometriosis filled cyst) from my left ovary, and two fibroids from my uterus. A Urologist had to be called into the Operating Room to perform special surgery on my bladder and ureters. I had tough scar tissue and adhesions requiring excision from all the years of build up in my pelvic cavity. My fallopian tubes were intact, but my cervix was covered in bands of Endometriosis that would have prevented the possibility of ever getting pregnant. I woke up to find my ovaries held back within my pelvis by slings, and my ureters kept open with stents.  Surprisingly, I wasn’t upset to see this. It was a liberating, validating and life-altering discovery.  I knew then that there wasn’t anything wrong with me, besides a medical condition that had gone undetected for 22 years. Dr. Tamer Seckin gave me my life back and instilled hope within me.  He was able to successfully remove all the Endometrial implants, in spite the surgery’s difficulty. A mini miracle.

I silently vowed to assess all my female students who suffer from “bad cramps”, and never judge like my school nurse did me, so many years prior.  I promised myself, and God, that I would promote awareness of this disease. I swore that none of my students, or anyone I came in contact with, would ever feel the isolation, despair, and rejection of having to suffer excruciating pain alone.  Since my surgery, I have referred 4 students from my school who were found to have Endometriosis. I know this has saved them from years of pain; poor school performance; broken relationships; missed life events; medical and emotional complications, and possibly infertility.  For these moments, the 22 years of pain seemed worthwhile. To save another life from this dreaded illness is worth it!

Endometriosis is a chronic, undermined and often debilitating medical condition that robs its sufferers of a normal quality of life. This disease causes the lining of a woman’s uterus to abnormally grow outside of the uterus. This material implants itself on the outer uterine wall, and on other organs and areas within the pelvic region. It has even been found in lungs, the heart, arms, eyes and brains of severe cases.  Each month, this tissue responds to normal hormones of menstruation by sloughing and bleeding as the normal uterus does during menstruation. However, there is no place for this blood to go. Sores and pooling of blood form on the affected areas and scarring occurs.  Time and time again of scarring leads to the development of adhesions, which are thick bands of tissue that create pulling of pelvic contents and cause pain. Unfortunately, the typical length of time it takes to be diagnosed is 11 years. By then, organs are usually affected.  Endo is also the leading cause of infertility in women. It has even been linked to uterine and ovarian Cancer. It is not visible on an ultrasound. It does not show up in blood tests. It can only be diagnosed with laparoscopic surgery. It is a life-long illness with no cure.  Each girl/woman who bears this cross, does so for life. This is why early detection is pivotal.

My story isn’t over yet, as my journey continues. I am still battling the aftermath of Endo, and all the damage it caused within my body, mind and heart. I can’t erase the past, but I can look forward to my future. I can do this because a guardian angel had led me to Dr. Seckin. Now, divorced from my husband and 38 years old, I proceed on an unknown path. Most recently I was diagnosed with a right ovarian mass, a bladder prolapse and Interstitial Cystitis (I.C.) I learned that I.C. has been dubbed Endo’s ‘evil twin’ and can also be debilitating. This condition can cause bladder spasms and severe pain with urination or sex.  Urinary frequency, urgency, hesitancy and other symptoms of a chronic Urinary Tract Infection are most common. There is no cure for I.C. and serious cases have a quality of life compared to those of Cancer patients and those on dialysis treatment.

Although I am still actively fighting this ‘war’ against Endo, I have gained incredible insight. As a nurse, my life purpose has been validated. I believe I am meant to advocate for other girls and women suffering from a frequently missed condition that destroys lives. For this, I am forever grateful.

The question that I had silently asked myself for a lifetime had finally been answered.  I now comprehend that I am not crazy or hypersensitive, and never was. I am actually stronger than I ever could have imagined. What was wrong with me all along has a name…

I thank  God for coming across the brilliant Dr. Seckin who successfully freed me from excruciating pain and also educated me on how to recognize Endo in my own patients.