When I first visited a gynecologist, I was nineteen. I had always accepted the pain as part of being a woman, something biological, but now the pain was too intense to ignore. Discomfort gave way to agony, it was disrupting my life. Sharp, piercing pain was the only driving force behind this appointment, but I had no clue where to start. All I knew about gynecologists was that one had delivered my brother and sister, so I made an appointment with that doctor, instead of taking a chance with an unfamiliar face.
For the next year and a half, I was prescribed several birth control brands, including one that caused me to gain twenty pounds. The doctor insisted that the series of ovarian cysts he found were the source of my suffering. My quality of life didn’t improve, and I knew that something was wrong, so I started reading up on my symptoms. The first time I mentioned that I suspected endometriosis, the doctor laughed.
Endometriosis is a disorder in which the endometrium, or lining of your uterus, continues to grow outside of your uterus. The tissue then implants itself into other organs in your body, which are commonly referred to as lesions. Symptoms include severe lower back pain, pelvic pain during activities like exercise and intercourse, abdominal bloating, chronic fatigue, heavy bleeding during menstruation, diarrhea or constipation and sharp pelvic cramps. Research and family history pointed to the undeniable similarities in my own life.
The doctor thought I was over-reacting, insisting that my affliction was gastrointestinal. Back and forth I went between GI doctor and the GYN, all the while wasting money on prescriptions that did nothing but produce awful side effects. Exasperated, the GI doctor sent me to the GYN with a note stating he felt that my problem was of the woman’s health variety. Finally, the doctor scheduled a laparotomy, the surgical procedure necessary to properly diagnose endometriosis.
All that I really knew about endometriosis I learned from my female relatives, and a particularly sad episode of 90210. My young mind kept playing the scene where Kelly is told she would never conceive, over and over. Plans for children had never occurred to me, I had different goals, but somewhere in the deep recesses of my mind lurked the guilt of being a woman who didn’t want kids. I wasn’t sure if I wanted a child just yet, but I was terrified of the prospect that I may never have one.
Part of the treatment plan was a series of injections following the operation, a hormone drug that puts your body into false menopause. Instead of opting for the drug that had been around for years, my doctor offered me the chance to try an experimental drug. The injection was administered, and my body reacted immediately. The intense pain was magnified, I felt it in my bones, and I had a blinding migraine. Subsequent weeks were filled with hot flashes, mood swings, extreme bouts of anxiety and insomnia, and clumps of hair loss.
At this point I decided to find a female doctor. With a desperate attempt to find compassion, I made an appointment with my first doctor’s former Physician’s Assistant. After pointing out the errors in my previous treatment, she laid out a new plan. One that was extremely similar to the last, except that she included pregnancy this time around. I was to have another laparotomy, followed by a series of Lupron, and then try very hard to conceive. Being that I was only 22, I hadn’t really factored a child into my life, but my doctor stressed that it was now or never.
Bolstered by a false sense of hope, blinded by fear, my then fiancée and I followed orders. When I finally got pregnant, I wasn’t sure how to feel, but I knew something wasn’t right. A few months in I started bleeding heavily, and I called my doctor in a panic. She assured me that bleeding was normal, but to call if it continued. It did continue, and so she finally took a look at the sonogram, only to realize that there wasn’t much of a heart beat to begin with.
My search for a different doctor started again, because I couldn’t accept that my only choice was immediate childbirth. During this time I spent countless hours waiting on specialists and getting tests. One pelvic pain specialist insisted that the source of all of my problems was my uneven hip bones. Another specialist told me to have a baby, and then get a hysterectomy. I was 24 years old.
It is important to note that I am what doctors lovingly (most of the time) refer to as a Type A patient. In all my research, I could not find one solid example of pregnancy helping women with endometriosis in the long term. But uncertainty still remained, so I kept trying.
Following my second miscarriage, I took control of the reins. The procedure put me over the edge, and I was fired up. I found an endometriosis specialist, with considerable experience performing excision surgery, an operation shown to significantly decrease the recurrence of implantation. For the first time, I had found a compassionate physician, one who didn’t treat me like I was crazy. Ten years after embarking on this journey, and I finally understood that the litany of other medical problems I had were somehow connected to this disease. But even he had limitations, stating that he was afraid to do the procedure because he believed past treatment had done irreparable damage. So instead, he settled on managing my pain with prescriptions and monitoring my progress.
I found myself visiting his office every month due to state regulations regarding painkillers. After some time, I took stock of my life. I realized that I was wasting so many hours of my precious free time just for the sake of pain management. This wasn’t the life I want, I decided, and did research on how to treat myself naturally.
Every woman’s journey with endometriosis is different, and I can only speak to what I experienced and what did and didn’t work for me. What I do know is that 1 in 10 women are affected by the condition, and even more go undiagnosed. I learned to trust my instincts, listen to my body, and do my research, but there is still so much that is a mystery.
To learn more about endometriosis, check out endometriosis.org.