Twenty-Five Years for the Correct Diagnosis: Endometriosis
My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.
Early Childhood and Early Troubles
I was a very busy active, athletic, child growing up. I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.
By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.
The Pain of Endometriosis
I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”
My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.
Endometriosis and Migraines
My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.
By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.
I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.
For the next 15 years it became a blur. I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end. I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).
I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst. I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.
The Power of Patient Groups
I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.
I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.
My story continues. More next week.