My Endometriosis Struggle Lasted 15 Yrs — Here's How I Finally Took Control
I was 13 years old when I first got my period, and I was so excited because my twin sister had already had hers for a year — I didn’t have to feel left out anymore.
That excitement sure didn’t last because my periods quickly became painful. This wasn’t the mild cramping I had expected, the pain felt like someone was crushing my internal organs from the inside. Unfortunately, like most menstruating individuals, I thought I just had to cope, so I managed the pain with feelings of dread and a fairly reliable regime of Advil. With each subsequent period, coping became harder as I experienced progressively worsening symptoms that I wouldn’t learn were endometriosis for 15 years. You read that right: 15 years.
To jump right to the happy ending, things have gotten better — much better. Thanks to the encouragement of my wonderful pelvic PT, the surgical wizardry of my OBGYN, and the compassionate care from the nursing team (which included nurses who had gone through the same operation!), I was finally able to get to the bottom of my symptoms and get relief from my pain.
Refusing to “just deal” with pelvic pain
My symptoms were pretty classic: Persistent abdominal bloating, persistent low back pain, limited tolerance to foods like dairy and gluten, unexplained fatigue, and pain during ovulation, with bowel movements, and with sex. The pain during my period would become so severe that I would often have nausea and vomit. Although it was not my experience, other symptoms of endometriosis can include spotting or bleeding between periods, infertility, and persistent pelvic pain.
The pain during my period would become so severe that I would often have nausea and vomit.
Hormonal birth control had some positive effects — significantly less pain and bleeding during by periods and less fatigue overall — but the side effects of low libido and increased pain with sex weren’t great either. My symptoms continued to worsen off of birth control and, at a certain point, left me unable to do anything except lay in bed for several days because of pain, and then recover from the coinciding fatigue.
Throughout the years, no one ever mentioned endometriosis as a possible cause of my pain, bloating, and sexual dysfunction, but I knew something was off. My friends were not impacted by their periods in the same way. I was not willing to let these symptoms affect me anymore, so I started researching my symptoms on my own.
Pursuing my diagnosis of endometriosis
I first sought treatment for my painful sex symptoms from a pelvic floor physical therapist (PT). In physical therapy school, I learned how effective pelvic physical therapy was at decreasing pain with sex, and even if I was sure I could deal with the painful periods, I was not willing to put up with painful sex. My amazing pelvic PTs helped to identify some of the muscular causes of my pain, and helped me learn that I was not only holding tension in my pelvic floor muscles, but my abdomen, lower back, and hips.
Even if I was sure I could deal with the painful periods, I was not willing to put up with painful sex.
They also encouraged me to find answers for my other symptoms, because this cluster of symptoms that I have been struggling with for years without an explanation — the painful periods, painful bowel movements, bloating, and pain with sex — was not new or unheard of to them and they connected me with other trusted healthcare providers to further get to the bottom of my pain.
As is true for most people with endometriosis, my quest for a diagnosis was anything but straightforward. In fact, it took almost 5 years of actively seeking answers: 3 pelvic PTs, over 6 OB/GYNS, several nutritionists, 2 urogynecologists, numerous pelvic exams, vaginal ultrasounds, and 2 laparoscopic pelvic surgeries, but I was finally diagnosed with endometriosis and provided a more targeted and effective treatment plan. I continue to be grateful for the encouragement and care from my pelvic PT, as it may have been impossible to figure out my symptoms without their support.
How pelvic PT & laparoscopic surgery relieved my pain
After finding clues in my abdominopelvic muscles and pelvic health history, my pelvic PT teamed up with a urogynecologist to eliminate my painful sex once and for all. My painful sex symptoms significantly improved with hands-on treatments in the clinic with my pelvic PT, and at-home exercise program designed specifically for my pain. My urogynecologist provided a topical ointment for some very specific tissue pain I had at the vaginal entrance (aka vestibulodynia). I was finally closer to getting my quality of life back!
I was a little scared to pursue a diagnosis of endometriosis.
After finally meeting with an OBGYN who specializes in endometriosis, it was recommended that I undergo an exploratory laparoscopic surgery, which allowed the physician to visualize the abdominal and pelvic areas, to try and locate any endometrial lesions. If any were found, they would remove them. To be completely honest, I was a little scared to pursue a diagnosis of endometriosis and even more scared leading up to the surgery. But also, I felt hopeful — I finally got the explanation I was searching for.
The surgery was successful and confirmed that I had Stage 1 endometriosis, with endometriosis found along ligaments in my pelvic organs, on my rectum, ovaries, ureter, and along my colon and pelvic walls — all successfully removed during the surgery. With the endometrial lesions removed, my body has begun to experience some relief.
Intentional recovery and hope for the future
Recovery was definitely gradual. It took about two weeks of rest and recovery before I was able to start my normal activities such as getting in and out of bed, taking short walks, and doing light activities around the house. I was fortunate to have a trusted partner to help with things like dressing, showering, and cooking. Each day, I took the time to assess my pain and energy levels, and adjusted my activities to accommodate my body’s recovery. It took about 6-8 weeks for significant healing but as the inflammation eased, I could really start to appreciate how this surgery changed my symptoms for the better.
I no longer have low back pain, pain with sex, unexplained fatigue, pain with ovulation, or pain with bowel movements.
I no longer have low back pain, pain with sex, unexplained fatigue, pain with ovulation, or pain with bowel movements. My periods are still a bit painful, but so much more manageable, and I actually have dependable energy to get me through my day. As I continue to recover, I feel so much more hopeful about how my body will continue to heal as I learn to trust my body again.
While I understand that removing the endometriosis is not a cure (it’s common for additional endometrial lesions to grow, which will probably require another surgery someday), I finally have the care team I need to help me if my symptoms return, and am excited about the advances in endometriosis care that are finally being prioritized.
And it goes without saying, but I am grateful that my pelvic PT had the endometriosis expertise that was needed to treat my pelvic floor dysfunction, and advocated for my health along the way. I will never forget how this care has impacted my life and it will continue to inspire me as a pelvic PT, as I care for others with endometriosis related pelvic pain.