What do I know about endometriosis?

I know my symptoms started when I was a teenager, about two years after beginning menses.

I know when, as a 19-year old, I brought my symptoms and concern for endometriosis to my attention of my OB/GYN, she dismissed my concerns because I didn’t have “enough” symptoms; since I wasn’t sexually active, I didn’t know if the symptom of painful sex was present, so it was apparently impossible to diagnose me. As if painful, debilitating periods, nausea, and gastrointestinal distress during my periods weren’t enough. (Forgive me for being a non-sexually active single teenager).

I know it took 14 years from the onset of my symptoms to get a proper diagnosis, when, at the age of 28, I established care with a new OB/GYN. I boldly announced to him that I thought I had endometriosis and to his credit, he believed me. My suspicions were confirmed 2 weeks later when I had a diagnostic laparoscopy, which I know is the only definitive way to diagnose endometriosis.

I know endometriosis is debilitating. When my symptoms quickly returned after my first surgery, worse than they had been prior to surgery, I spent my days curled up in the fetal position in bed, unable to do anything but exist on strong painkillers and wish to die so the pain would go away.

I know that oral contraceptives and GnRH agonists are only palliative therapies for endometriosis. They only treat the symptoms and not the disease itself, which I why I refused to even consider taking them.

I know that excision is the gold standard for endometriosis care. However, my OB/GYN is not an excision expert. There are few surgeons worldwide who are truly qualified to perform excision surgery. I decided that I couldn’t take the suffering anymore, so I sought a second opinion with the experts at the Center for Endometriosis Care in Atlanta, Georgia. The day after my 29th birthday, I had surgery with Dr. Sinervo, who excised all the endometriosis he found, which was still present even only 6 months after my first, non-excision surgery had supposedly removed it.

I know there is no cure for endometriosis. While removing the endometriosis lesions via excision removes the disease itself, there can be complications such as scar tissue that are impossible to 100% prevent.

I know my lingering pain is likely from adenomyosis and it is a pain I have to live with every day. But when I consider where I was and where I am now, I will take this pain over the pain of raging endometriosis any day.

I know that a hysterectomy is not a cure for endometriosis.

I know that traveling to have surgery with one of the world’s best excision experts was the best decision I have ever made in my life. Dr. Sinervo truly saved my life, and for that I am forever grateful.

I know I am one of only 176 million women and girls worldwide who is affected by this horrible disease that has no cure and not enough awareness. Together, with loud voices, we can respond with what WE KNOW about endometriosis and change the future for women with this disease.

This is why we fight.

🎗March is Endometriosis Awareness Month!!!🎗

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