2018 was one of the roughest years of my life. But before I elaborate, please allow me to take you back to 1988, when I got my first period at age 11. I am 43 today, and it is finally starting to make sense why I always had such horrendous periods. Starting at age 11, and through my adolescent years and into my adulthood, I had extremely heavy periods; I mean periods so heavy that I would bleed through a super-sized tampon and a heavy flow pad within 45 minutes. I had to wrap myself up in a towel at night while I slept; otherwise, I would bleed all over my bed sheets, even while wearing a heavy flow pad. Two events that I’ll never forget that illustrate my heavy menstrual flow: 1) In high school, 1994, I was taking a French class final exam, and when I rose from my seat, the seat was covered in blood. I was mortified, sat back down, and waited for every student to leave the room. Once the coast was clear, I shyly motioned for my teacher to meet me at my seat. Luckily I had a female teacher, Madam Jabour, who was empathetic and arranged for me to get a change of clothes so I could leave the classroom, and 2) In college, 2013 (yes, I went back to school at 30-something), I finished a marketing exam, got up from my chair, and it was covered in blood. I had changed my tampon and put on a fresh pad immediately before the exam started, and it only took me about 45 minutes to complete the exam! This time I had a male professor, so I quickly gathered my things, turned in my exam, and walked out of the room. Once I was out of the classroom, I had to walk down a hall, through a common area where students congregated, out that door, through a breezeway, and to the parking lot to my car. I had to laugh at the situation just so I wouldn’t have a complete meltdown.
In addition to a heavy flow, I had painful cramps, and because of the heavy flow, I was left feeling light-headed during my cycle, and it sometimes felt like it was hard to breathe because of anemia due to the excessive blood loss. I also had huge blood clots; so large that I would be concerned when I saw them in the toilet. There were always a few days where my period was heaviest, and those mornings, before I would get up out of bed, I would put a towel down there to catch the huge amounts of blood and blood clots that would come out of me; otherwise, there would be a huge mess on the floor. I learned that the hard way.
Fast forward to 2015. In 2015, I went for my annual gynecological exam where, at first, all looked well. But because of reported pain with sex (my fiancé could actually feel something sharp inside me and was getting scratches), a second look was taken and a nodule could be felt. With a worried look in his eye, the doctor told me that I needed surgery ASAP.
Endometriosis was found during this surgery. The endo was everywhere, including my bowels (pouch of Douglas), and a colorectal surgeon shaved it off laparoscopically. They also performed a partial hysterectomy. At the time of this first surgery in 2015, I knew virtually nothing about endo and certainly had no idea it could eventually come back. At every subsequent, annual appointment after surgery, I was told everything looked fine. I sincerely believed that I had no reason to think about endometriosis ever again. I thought it was taken care of. I thought everything was okay.
2017, 2.5 years after surgery to remove the endo from my bowels, I started burping all the time, became excessively gassy, and felt extremely bloated on a daily basis. I felt the odd need to spit all the time. Initially, I thought I had IBS; again, not thinking anything about endometriosis. In 2017, I was also training to qualify for the Boston Marathon. I thought, well, if I’m well enough to train for a marathon, then I’m fine. When I started experiencing extreme pain, like seeing-double-type pain, and finding blood in my stool, I went to my primary care doctor who I knew could refer me to a gastroenterologist. After all, a gastroenterologist is who I thought I needed to see. When I told my PCP about my CYCLICAL symptoms, however, she was the one who suggested it could be endometriosis but that I needed to get a colonoscopy. Note, I’m still training for Boston, pushing through all of the pain. It is worth noting again that I did not have pain every day. It was cyclical pain. On the days that I had rectal pain and went running, in the actual act of running, the pain strangely subsided. I felt great in those moments, and that’s probably what kept me motivated to keep training. At the very moment I stopped running, the pain/tenesmus (the feeling that you need to have a bowel movement) came back, just like that...poof! I would run to the toilet, and tiny bits of stool and blood would come out. I told the gastroenterologist that and he was baffled. He couldn’t believe I was running under those conditions.
Anyway, I had a colonoscopy and it showed a mass in my rectum. I spent 1.5 grueling weeks waiting on the results as the docs had never seen anything like it; they were thinking I had colon cancer. I’ll never forget my doctor personally calling me on a Monday night, while I was watching The Bachelor (lol), to give me the news that it wasn’t colon cancer. In a way, he was relieved and I was relieved. But unfortunately, something had invaded my colon, and it was endo. A later pelvic MRI would show just how big the mass was.
May 2018. Sadly, I wasn’t able to run the marathon that would enable me to qualify for Boston. The marathon landed on a weekend that I was having debilitating pain, so I had to cancel my flight and accept the fact that I wouldn’t be running in the Boston Marathon anytime soon, if ever. Many tears were cried that day.
October 22, 2018. Long story short, I ended up needing a colon resection. Endo had penetrated my colon, my left colon had to be removed, along with most of my rectum, and I had an ileostomy bag for 2 eye-opening months while everything healed. At the time of the colon resection, I also had a total hysterectomy. The endo had actually dragged my left ovary into my rectum! In this surgery, 3 surgeons operated, including a gynecological oncologist because my regular OB/GYN felt it was too risky to do the hysterectomy because of how deeply infiltrated the endometriosis was, a colorectal surgeon (who saved my life), and a urologist who put stents in my ureters while endo was excised from areas around my bladder. There were also five other doctors who were there observing the surgery, learning from it. My case was fairly rare in that endometriosis had worked its way through my colon walls, so I had a bit of an audience that day, which I gladly signed a consent for.
Before my surgery, I was told that there was a 50/50 chance I would require a temporary ostomy. I was so scared at the thought of that, that I did not Google anything about ostomies, ask anyone about them, etc. My anxiety levels were already through the roof and I could not handle any more stress. When I woke from the surgery, the first thing I did was reach to my side, and as soon as I felt a bag, I chuckled and thought, okay, here we go! I got a crash course in ileostomies. I went through 7 bags in one day; felt like mile 22 of a marathon. It turned out, marathon training prepared me for the hell I would endure in 2018.
After the ileostomy bag was surgically removed in December 2018, I had no more endo pain, but I had new challenges, like I could not defecate without the help of laxatives. It was like my colon would not wake up after going through so much trauma.
Fast forward to 2020. I haven’t had any endo pain since the excision in 2018, thank goodness, but I do have LARS, Low Anterior Resection Syndrome, and have had it since my bag was removed. I’m on the constipated side of LARS, and have to use a natural laxative in order to evacuate each day. Things are definitely not the same pre-surgery and probably never will be. I am at peace with that. I’m happy to be alive.
Jennifer lives in Oklahoma with her husband and two Black Labs, where she owns a contracting company, an editing company that supports the court reporting industry, and she’s also a licensed real estate agent. Although she is still unable to run long distances, i.e., a marathon due to the strain it causes to her intestinal tract, like internal bleeding and occasional pain where her remaining healthy colon was reconnected to her remaining rectum, she gratefully runs about 5.5 miles three to four days a week with her dog, Murphy. She has an Instagram account, @endendo.now, where she shares snippets of her journey with bowel endometriosis and reports how she’s doing to this day after her life-changing surgeries.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.