I was 26 years old the first time I experienced endometriosis symptoms. I was driving to work (I’m a nurse) and I felt a really bad pain on the upper right side of my stomach, right under my rib. It was a sharp, stabbing pain. It was the most intense pain I had ever felt; it took my breath away.
When I got to work, they sent me to the emergency room and ran a bunch of tests. In the end, they gave me pain meds and told me to follow up with my OB-GYN. I did, but she didn’t understand the location of the pain and only told me to keep an eye on it.
It was a few months into this pain coming and going when I realized that it would start about four days before my period and stop around four days following it. After about a year though, it became more frequent, and I knew that it wasn’t normal. I decided it was time to get a second opinion.
This OB-GYN asked me more pointed questions: for instance, if I had ever experienced pain with sex. (Which I had, I just didn’t think the two were connected. I merely thought I was someone who had pain with sex.) Then she asked me if I had ever heard of endometriosis; I had been a nurse for eight years, but this was the first time I heard of it.
She didn’t make it seem at all like a big deal, so I didn’t see it as one. It was like she was telling me I had the flu. I was given birth control and ibuprofen to manage the symptoms, and that was it. It was nice to have a name for it though. That put me at ease.
Looking back, it makes me laugh to think how casual she was about it. This disease is such a bigger deal than she made it seem. I wish the conversation had been more in-depth; then I would have done more research and paid closer attention to my symptoms.
After about two years of symptoms, I decided to seek a third opinion and went to see an OB-GYN who was recommended to me. When I told him about my symptoms (pain on the upper right side of my stomach), he told me it could be from having endo in my chest cavity (which only a very small percentage of women have). He referred me to a surgeon, and I had eight biopsies done. One came back positive for endometriosis — my first official diagnosis.
After that, I was prescribed leuprolide (Lupron), which basically puts you into medically induced menopause. The plan was to be on it for six months, but the side effects were so bad that I could only tolerate three.
I wasn’t feeling any better. If anything, my symptoms had gotten worse. I was experiencing constipation and gastrointestinal (GI) issues, nausea, bloating. And the pain with sex had gotten a million times worse. The pain in the upper right side of my stomach became shortness of breath, and it felt like I was suffocating. The symptoms were so bad that I was put on medical disability from work.
It’s astonishing what your mind does to you when you’re looking for a diagnosis. It becomes your job. At that point, my OB-GYN basically told me that he didn’t know what to do for me. My pulmonologist told me to try acupuncture. It got to this point where their attitude was: Find a way to cope with this because we don’t know what it is.
That’s when I finally started to do research. I started with a simple Google search on the disease and learned that the hormones I was on were just a bandage. I found that there were specialists for endometriosis.
And I found an endometriosis page on Facebook (called Nancy’s Nook) that just about saved my life. On that page, I read comments from women who had experienced similar chest pain. This eventually led me to find out about a specialist in Atlanta. I traveled from Los Angeles to see him. Many women don’t have specialists that are local to them and will have to travel to find good care.
This specialist not only listened to my story with such compassion, but also helped successfully treat the condition with excision surgery. This type of surgery is the closest thing we have to a cure at this point.
If you’re a woman who thinks she has to suffer from this disease in silence, I urge you to educate yourself and reach out to support groups. Pain is never normal; it’s your body telling you something is wrong. We have so many tools at our disposal now. Arm yourself with questions to ask your doctor.
Raising the awareness of this condition is important. Talking about endometriosis matters so much. The number of women who deal with this condition is astounding, and the lack of treatment is almost criminal. We have a duty to say it’s not OK, and we won’t let it be OK.
Jenneh is a 31-year-old registered nurse of 10 years working and living in Los Angeles. Her passions are running, writing, and endometriosis advocacy work by way of The Endometriosis Coalition.