I Might Have Endometriosis. Here’s Why I’m Not Scared

Growing up in a mostly female family with my mom, older sister, seven aunts, and over a dozen female cousins, I thought I had heard all there was to hear about a woman's body and experience. At our annual family reunions, they discussed contraceptives, compared birthing stories, and even shared relationship advice. As I transitioned into womanhood, I felt prepared for anything these years could throw at me.

Then, about six months ago, I began having pelvic pain, especially during intercourse with my partner. I was definitely not prepared for that — or the realization that it could be caused by something called endometriosis. Now that I know more about this condition, especially how common it is, I have one question: Why is no one talking about endo?

Managing Pain & Uncertainty

At first, I didn’t have the slightest idea what could be causing the pain, which was frustrating and a little scary. I received all the standard STI tests and even had a transvaginal ultrasound, but the medical professionals could not find the culprit.

Eventhough I didn’t know the exact cause of my pain, I was grateful to learn that I could still treat the symptoms, so I started pelvic floor physical therapy. Physical therapy has been shown to be very effective in treating pelvic floor dysfunction and the effects of chronic pain that can develop in those with endometriosis. My PT combines various techniques to relieve the pain, including using biofeedback to train me to relax my pelvic floor muscles. She also assigns personalized exercises for me to help gently stretch them. And she performs both internal and external manual therapy techniques to help improve the flexibility of my pelvic muscles and help to reset the complicated mind-body loop involved in pain perception and response.

I have experienced substantial relief by implementing all of these methods, but intercourse can still be painful. Thankfully, my pelvic floor physical therapist works closely with my OB/GYN and together they are considering endometriosis, “endo” for short. Six months ago I had never heard of endometriosis. I remember when my pelvic floor physical therapist first informed me of the condition, I couldn’t even pronounce it. Now, I think about it all the time.

So what is endometriosis? Simply put, it is when tissue that is similar to the lining of the uterus, grows outside of the uterus, and onto other neighboring organs. This chronic condition affects 1 in 10 people with a uterus and typically takes years to diagnose. Pelvic pain, including pain with intercourse is a common symptom.

The tricky thing with endometriosis is that a true diagnosis requires surgery. After much hesitation and indecisiveness, I scheduled laparoscopic surgery for this coming summer to diagnose and potentially remove any endo lesions that may be present. Luckily, waiting until summer gives me some additional time to prepare, and in the meantime continue physical therapy. I would be lying if I said I am not nervous, but both my physical therapist and OB/GYN have been incredibly supportive.

Getting Over the Fear of Endometriosis

Perhaps the main factors contributing to my fear of endometriosis and the surgery, are that the diagnosis feels so foreign to me, and at times I can feel so alone in my experience. I had made it midway through my twenties without ever even hearing the word endometriosis, let alone knowing someone who had overcome it… or so I thought. I was puzzled. With so many women in my life, why was it that I had never heard of endo?

As I began preparing for the laparoscopic surgery with my physical therapist and physician, I started mentioning it to a few close friends — and the ripple effect exploded from there. It turns out, I have many female friends and family members who have dealt with endo, and everyone’s story is different. I have an aunt who discovered she had endo when she was trying to have children. I have girlfriends who underwent the laparoscopy only to find other pelvic issues. And I have acquaintances that are able to manage their endo symptoms purely through pelvic floor physical therapy so have never had to undergo the surgery. Every experience is unique, just like every woman in my life is unique.

Now that I am having open conversations with other women about endometriosis more regularly, I find myself feeling more comfortable with the idea of it and with the upcoming surgery. I truly believe we need to normalize pelvic health by discussing it openly. As I have become more comfortable discussing these topics within my community, I have found that so many women in my life are on their own pelvic health journey. I no longer feel so alone, and I finally feel that there is a light at the end of this endometriosis tunnel.