My experience with endometriosis did not start the way it does for many women. I was not the teenage girl with the abnormal monthly cycles or debilitating pain. I was a normal girl who was healthy and active. My experience with endometriosis began when my husband and I made the decision to have children, and I stopped taking hormonal birth control for the first time since I was 16 years ago.
On Thanksgiving a few years ago, I was not feeling very thankful. No, in fact, I was feeling a constant discomfort in my right side. I found myself using a heating bad for this pain constantly, as it was the only thing that seemed to make it feel better. I visited my doctor, who ran tests, but nothing came back abnormal. I thought I was imagining things.
In December 2012, in an emergency room visit after a sleepless night of discomfort, I was diagnosed with ovarian cysts, and tests showed that the cysts appeared to be blood-filled. I was prescribed prescription pain killers and told to see an OB/GYN. Having had no family history of such a thing, I began researching what was going on with my body and took recommendations for friends for a good OB/GYN to seek out some real answers.
In January, I had my first appointment with my new doctor, who ran more tests and expressed that she felt the cysts may actually be endometriomas, cysts caused by the build-up of endometrial tissue and one of the symptoms of endometriosis. She asked about previous symptoms and found it odd, just like I did, that there were none.
My doctor decided to monitor the cysts for a few months to make a determination on what type of cyst they were and what our course of action would be. She prescribed me some pain killers for the days when the discomfort was consuming and encouraged me to continue with heating pads and hot showers.
Unfortunately, by the time I attended a check-up in March, the discomfort had become much more than that, and the cysts on my ovaries were growing. I was finding it difficult to function in everyday life. My cysts had become so large that they were causing my ovaries to twist, and I was experiencing pain during periods that would make child labor feel like a walk in the park. My quality of life was a fragment of what it had been only a year before.
My doctor put me on birth control pills to control my cycle and alleviate some of the cycle-related pain while we scheduled surgery. While this temporary fix made an impact, I was still only a shadow of my former self. My cysts were making me uncomfortable constantly. I was constantly tired, and I had to stop taking the prescription-strength pain relievers because I was beginning to notice struggles with my focus and concentration and was afraid of relying upon the medications.
In July 2013, I underwent robotic laproscopic surgery. The surgery was outpatient and the recovery was short. I felt better after only a few days, and within a few weeks, I was actually feeling like my old self. When I left the hospital, my diagnosis had been confirmed: I had very severed endometriosis.
When I went to my post-op appointment, the news was worse than I was expecting. My husband and I would have to put off our hopes of a family for a while in order to begin another round of treatment, as the surgery was not as successful as my doctor had hoped. She was not expecting me to be the worst case of endometriosis she’s ever seen in someone my age — and I was, with a Stage IV diagnosis and with no previous symptoms.
She prescribed six one-month injections of Lupron Depot, a medication that turns off estrogen at the brain level, putting a woman into a temporary state of menopause. The idea is that because endometriosis is fueled by estrogen, a lack of estrogen prohibits growth and actually kills off existing endometrial tissue. Reviews of the medication are shady at best, and I was intimidated by the side effects that many women had reported experiencing, but I decided that I needed to try it for myself, first.
It is now February 2014, and I have finished my Lupron series. I only did five of the six shots due to a noticeable effect in cognitive ability and memory that was causing me to struggle in my professional and personal life. While I was physically feeling normal, having had the surgery and was fortunate not to have any physical side effects from the Lupron, I could not stand the idea of another month were I couldn’t mentally be myself.
Now, we wait. We wait for the opportunity to move back to the path my husband had original set upon, and I can’t help but feel that many women who experience endometriosis must feel the same way — lost and afraid. With limited research on the disease and even more limited respect for the symptoms or cases like my own where things have a sudden onset, it is difficult for women to find the help they need. My advice to everyone is to find a doctor who will listen to you and care about your treatment, your goals, and your options — and, maybe even more importantly, reach out to other women for support. When I was officially diagnosed in July, I did just that, and I have found that much of what has helped me with this fight is hearing other women tell their stories. It gives each of us perspective on our own battle.
Endometriosis is more than just cramps. It is a debilitating, life-changing diagnosis, and I hope that as the women that suffer from this disease and the people that love them push to inform those around them of the condition, more research may result in more answers for all of us.