I’m starting to stir as I begin to come to and my eyelids flutter open. I’m in recovery and I see my doctor striding over. A soft smile spreads over my face as I realize I’m out of surgery and seemingly fine. My doctor says, “what took you so long to get to me? You’re one tough chick. From what I found, on your good days your pain was at a five or a six and on your bad days your pain was at a 10.”
Tears began to silently fall from my eyes. I was upset that I didn’t have more faith in myself and that I let this go on for too long. Yet, I still felt vindicated. This whole time I wasn’t crazy or over exaggerating. Everything I thought was just confirmed. I have endometriosis and this is my story.
Let’s start from the beginning. The first time I went to the gynecologist I was 14 years old. I was hospitalized from a cyst that ruptured on my left ovary and at the time of the rupture there was another cyst present. The hospital insisted I follow up with a gynecologist. My first period came at age 11 and after a few months of regularity I was going months without a period and then when I did get one it was as if all the missed periods rolled into one.
I went to my mom’s gynecologist and was put on the birth control pill in an effort to regulate my periods and stop future cysts. The cyst I was left with after the rupture eventually went away. While my period began to regulate, the intensity of each period only got worse. From excruciating cramps to relentless bleeding the pain became more extreme.
Years went by and pills were constantly switched in an effort to improve my periods, but nothing seemed to work. I would say I was around 16 years old when my mom first brought up endometriosis to my gynecologist. She asked, “do you think this could be endometriosis?”
At the time I wasn’t even aware of what endometriosis was, but I knew that there was no one in the world who knew me better than my mom and that if she thought I might have this then it was something to explore. For those who don’t know, endometriosis is a disease where tissue that normally lines the inside of your uterus grows in other places in your body.
According to the World Health Organization (WHO), endometriosis affects roughly 10% of reproductive aged women and girls globally. WHO defines endometriosis as a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.
My gynecologist seemed to think otherwise. She brushed off the idea without a second thought and we continued down the road of trying different pills and methods of birth control to no avail. Unfortunately, I have since learned that girls and women being dismissed and undiagnosed for years is very common.
The number of different birth control pills I have been on seems countless. I went on the patch, the Nuva Ring, Seasonique, lower hormone birth control pills, higher hormone birth control pills and so on and so forth. As years passed by my mom and I continued bringing up the possibility of endometriosis. My gynecologist once said, “We don’t like to test you for endometriosis unless you’re trying to get pregnant and having difficulty.”
At this point in my story you may be wondering why I didn’t change my gynecologist and I’ll admit that looking back on it the fact that I didn’t seems tragic. But at the time I was young and I went to the same gynecologist as my mom, one that took my insurance and knew my entire history. I didn’t even think about switching to someone new. At some point you begin to question whether there is even something wrong when your own doctor doesn’t believe you.
Each year I would go to my annual exam and have what felt like the same conversation. I would express that I suffered from extremely difficult periods, ovary pain, cramps, pain with sex and more. My pill would be changed and my ovaries would be checked for cysts, but everything would check out fine. For those who are unfamiliar with endometriosis, it is not something that can be seen on an ultrasound and that is why the only way to test for it is through surgery.
Once I hit my mid twenties I fought harder. I recall sharing my fears with my mother. What if I do have endometriosis? What if in the future I try to get pregnant and can’t conceive because of something that my doctor wouldn’t test me for? I decided I wanted to know before that time. I wanted answers and when I hit 26 I was determined to get them. In addition to my menstrual pain, I would endure stomach pain that couldn’t quite be diagnosed.
I went to a gastro doctor and explained my symptoms. I was tested for everything: celiac, chrones, IBS, lactose intolerance and the list went on. Everything came back clear. We brought up endometriosis once more. One night my pain was so excruciating that I called my mom to drive me to the emergency room. I was sure something was wrong. We received a similar answer as we did at the gastro. It’s possible it’s endometriosis, but our tests won’t show that. You should follow up with your gynecologist.
I went to my annual exam with my gynecologist and I, for what seemed like the millionth time, expressed my concerns. I explained my difficult periods, cramps, ovary pain and pain from sex. I again told her that I thought it could be endometriosis. My doctor responded that I should follow up with a gastro doctor. I came prepared. I quipped that I had seen one and was tested and ruled out for everything and the gastro doctor as well as emergency room doctors informed me that it could be endometriosis.
She finally agreed to test me. She said I could get bloodwork done that day and that we could move forward with scheduling the surgery. She told me she thought there was a 50% chance that she would find something. To me it seemed that she was finally appeasing me by agreeing to perform the surgery, but that she didn’t think I had endometriosis at all. I left my appointment feeling uneasy.
My pain was seemingly getting worse. I decided to get a second opinion from a different gynecologist. I brought my mom with me so we could both get our questions answered.
He brought us into his office first so we could talk before he examined me. I instantly felt at ease. After five minutes of talking to him about my history, showing him my profile from speakendo.com and sharing that my current gynecologist said she thought there was a 50% chance she would find something he stopped me. He proceeded with, “I wouldn’t do surgery if I thought there was a 50/50 shot. I think that it’s an 80/20 chance that you have it. Actually I think it’s 90/10.”
I informed him of my current doctor telling me she didn’t like to operate unless the patient was having difficulty conceiving. I shared that I could accept that when I was a teenager, but couldn’t accept it at this point in my life. He said he had operated on 15 year olds with severe enough symptoms. I felt like my world was turned upside down. Everything my doctor of 13 years had told me was just dismissed. I became angry that I waited so long, but hopeful for the future.
When we left the appointment my mom asked me what I thought I wanted to do. I said that this doctor made me feel more comfortable in five minutes than my other doctor had made me feel in years. I cancelled my surgery with my prior doctor and scheduled a surgery with my new one. My new doctor explained that when he went in for surgery he wouldn’t leave a stone unturned and that he would check every possible area for endometriosis.
I began to feel that if I continued with my former gynecologist she wouldn’t be as thorough since it was evident she didn’t believe me. I thought what if I go in for surgery and she only checks one area and informs me I don’t have endometriosis? That thought was all I needed to move forward with my new doctor.
On the day of the surgery I was incredibly nervous, but ready to know once and for all what was going on with my body. I recall saying to my boyfriend what if I don’t have it? What if after all of this I don’t have endometriosis and I look like an idiot? He told me that even if I didn’t have it, getting checked was the right thing to do and that we would figure out what was wrong whether it was endometriosis or not. He said I was right to schedule the surgery. He reassured me through my uncertainty.
After surgery my doctor came to talk to me. He explained that my entire uterus was covered with endometriosis, but he was able to laser it off. He also said that the endometriosis hadn’t reached my ovaries and that moving forward if and when I did ever want to conceive it shouldn’t be a problem. Even though years of endometriosis being untreated was on display in the pictures in front of me, I felt relieved because my future was not being limited from the diagnosis.