Endometriosis. Just like menstrual cramps, right? Wrong. Not very painful, right? Wrong. Only occurs in your reproductive organs, right? Wrong. It’s not like a big deal, right? Wrong.
Endometriosis is a condition where tissue that is similar to the lining of your uterus grows on other parts of your body. When this tissue grows in the wrong places, it can cause painful symptoms that can impact not only your menstrual cycle but also your daily life. Some people with endometriosis have trouble getting pregnant due to scarring and fallopian tube blockage as well. Did you know that endometriosis can be found in your rectum, vagina, bladder, intestines, diaphragm, and lungs? (Photo credit: Endometriosis Foundation of America)
Way back in 1988 (yes, that’s 37 years ago), after I had our first child, I began to experience pain. It felt like a deep menstrual cramp. Big deal, right? Yet, it continued for more than a few days, and I wondered what it was. I eventually made an appointment with my OB/GYN who did some blood tests and ruled out some possibilities. He eventually said he thought it might be endometriosis. He could do a rather new minimally invasive procedure called a diagnostic laparoscopy and excise (remove) any endometriosis he saw.
Although I didn’t know it, it’s important that he said “excision” and not “ablation” (see graphic at right). He did that, found endometriosis, and removed it. The pain went away!
Detail image from “The Endo-Graphic” copyright Sarah Soward 2017 https://sarahsoward.com/blogs/blog/the-endo-graphic
That was the first of eight laparoscopies I’ve had. These surgeries were for endometriosis excision or removal of scar tissue and adhesions from previous surgeries. That’s thirty-seven years of debilitating right-sided pelvic pain and surgeries that removed endo, but not permanently.
In 2010, I began menopause after being on birth control pills for about a dozen years. The pills were for controlling my endometriosis and menstrual cycles. We hoped menopause would reduce or stop the endometriosis. However, that was not the case. In December 2012, I had a full hysterectomy at age 57.
About six weeks after the hysterectomy, I began to feel the familiar pain of endometriosis. It was on the right side of my pelvic area. My gynecologist said, “It’s not possible.” He put me on prednisone to treat possible inflammation from the hysterectomy, but that didn’t help. He tried a sacral nerve injection, but that didn’t help either. Eventually, I begged him to do a laparoscopy to see if there’s endo there. He did the procedure in August 2013. During the procedure, he found one spot of endo deep in my pelvic cavity. It was right near and touching a nerve that corresponded with my pain. He was amazed, but relieved to find it. I was too!
I went on to have laparoscopies in 2015, 2017, and 2021, finding endometriosis in all but the last one. Since late 2019, I’ve had right-sided pelvic pain that feels like endometriosis, but none was found in my 2021 laparoscopy. I’ve been referred to and seen two pelvic pain specialists and three pain management specialists. I had a repair for a right inguinal hernia. I traveled to Portland, Maine, to see a neuropelveologist (an endometriosis surgeon trained in the pelvic nerves) for evaluation and treatment. I had two different injections by a specialist at Penn Medicine in Philadelphia. I also had a 30-minute Zoom consult with the top neuropelveologist in the U.S., located in Oregon. At this point, the neuropelveologists believe the femoral branch of the genitofemoral artery is compressed. This could be caused by scar tissue, adhesions, or mesh from the hernia repair. Both have said it would be difficult to surgically repair or decompress that nerve. The nerve could be permanently damaged. One recommended I try a spinal stimulator for nerves related to that area.
So, I am at a crossroads that so many women with endometriosis and resulting pelvic pain find themselves. What do I do next? Can I live with the pain? What can I afford to do? How far am I willing to travel for treatment? Is there really an answer and treatment out there that will relieve my pain?
I pray as I always do. I ask God for a path that will bring long-lasting pain relief, if one exists. And I wait for an answer. For direction. For His path. “Remember your word to your servant, for you have given me hope. My comfort in my suffering is this: Your promise preserves my life.” Psalm 119:49-50
“Listen, accept what I say,
and the years of your life will be many. I instruct you in the way of wisdom and lead you along straight paths. When you walk, your steps will not be hampered; when you run, you will not stumble”.Proverbs 4:10-12
So I covet your prayers as I search, research, and wait. Need more information on endometriosis?
–Websites: Endometriosis Foundation of America, Endo What?, The Endometriosis Summit
— Facebook groups: The Endo Space – Endometriosis Support Group, Endometriosis and Me, Nancy’s Nook Endometriosis Education
Instagram: the_endo_space, lifewithendometriosis, and me–hopethroughchronicillness
HOPE through chronic illness 