Endometriosis: 23 Years of Searching for Answers
I remember waking up on the morning of my 13th birthday with an unexpected birthday present — my first period. Like many girls, I was unsure of what my period was supposed to feel like, and I was uncomfortable talking about it. Growing up, I had watched my mother struggle with period pain, so I assumed that was normal. I was accustomed to seeing her miss work each month due to pain, so when I started experiencing severe cramps and excessive bleeding, no one batted an eyelash.
As I got older, my symptoms continuously worsened. Bedridden every month because of my period, I missed out on family time, social engagements, and professional opportunities. I tried everything to help ease the pain — over-the-counter pain relievers, heating pads, exercise, dietary restrictions, teas, and even vitamin supplements — but nothing helped.
Even worse than not being able to find relief for my pain was that no doctor could tell me what was wrong. They poked and prodded, but no one could properly diagnose what was happening. I saw so many doctors, including some of the most highly regarded physicians in the country, yet I was repeatedly told that nothing was wrong.
It wasn't until I was 36, 23 years after my symptoms began, that I finally got some answers. I started bleeding at a photo shoot and was referred to gynecological specialist. The doctor suggested that the pain I had endured throughout all of those years might be the result of something I had never even heard of: endometriosis.
Having finally received the appropriate diagnosis, there was still an uphill battle to be fought. After a 4 ½-hour laparoscopic excision surgery, my disease was excised. During this recovery, I got angry. Why did I suffer from unrelenting pain all of those years when I could have been treated? Why did every doctor I saw miss this? Why didn't anyone take my pain more seriously? If I had been diagnosed at 13 or 20 or even 30, I could have had 12 weeks a year, every year since my period, back. I lost that time, but I resolved that no other girl should suffer like I did. This frustration led me to take action and co-found the Endometriosis Foundation of America, an organization that works to improve the lives of those affected by this disease.
I consider myself lucky. I found proper treatment, I was able to have a beautiful daughter, and I have relief from pain. However, so many women continue to be misdiagnosed and mistreated. Endometriosis affects 1 in 10 women of reproductive age and is one of the leading causes of hysterectomy and female infertility. I am no longer uncomfortable talking about this, and you shouldn't be either. We all need to work together to right this wrong, educate our physicians, and help each other as women.
The statements and opinions in this blog post are those of the author and do not necessarily represent the views of the U.S. Department of Health and Human Services' Office on Women's Health.