My story left off in January 2014 following my radical hysterectomy in November of 2013. My abdominal pain never really stopped following those drastic measures. Sure, some of the stabbing and burning, cat-scratch like pain inside that I knew to be endo-related was gone, but my lower left abdomen was still riddled with the nerve damage and scar tissue pain that I had experienced throughout my endometriosis journey as a result of the many procedures I had undergone.
This pain interfered with life and work a little bit, but luckily, my hours were flexible so I was able to work around my illness. I missed out on a few things socially, but overall I felt okay and the pain was manageable. I bought into the fact that my endo was dying off from lack of estrogen and that all of the pain I felt was related to pelvic floor dysfunction, scar tissue and nerve damage to my abdomen from all of my surgeries and procedures. This was my new normal and for the most part, it worked.
Over the course of the next 2 or 3 years, as a result of finding a pain management solution that helped me maintain a busy and somewhat active and healthy lifestyle, I lost over 100 pounds and began to work full-time again! I had a new-found lease on life and I was ready and raring to go!
In early November of 2017, I was at an event for the community health and wellness program that I run when a familiar foe made its return in a noticeable way. Occasionally in the past few years, I had terrible pelvic floor disfunction flares that correlated with extra busy, stressful seasons or times where I knew I had gone overboard with physical activity or lifting. This was different. This was the same pain in the same places where I had suffered with endo for decades before. But how could it be? I didn't have those parts anymore! The endo had no estrogen source anymore. Wasn't it dying off?
I crawled home and into my bed after my event and tried to "sleep it off." Maybe it was a fluke? The pain subsided a bit through that initial sleep, but got progressively worse over the next few day until I ended up in the ER for abdominal pain for the first time since early 2013.
In my heart, I knew what it was, but I went through the proper channels and testing anyway...in a state of numbness and shock as one by one, things were ruled out.
✅ PRIMARY CARE - Result: Can't be endometriosis. You had a hysterectomy. You should see an OB/GYN, get a colonoscopy, an MRI and an ultrasound.
✅ Ultrasound - all good
✅ MRI - all good
✅ Colonoscopy - clean as a whistle
✅ OB/GYN - Result: Can't be endometriosis. You had a hysterectomy. You need to see a urologist
✅ Urologist - Result: Can't be endometriosis. You had a hysterectomy. You need to relax and take valium (not even kidding) and a few other wonderful things that I won't share here, but let's just say that he equated the tightness in my lady parts to the chemical symbol, Ti. MY RESPONSE: "You need to get out so that I can get dressed and leave because we are finished here." #YouAreFired
At this point, I had no idea what to do or where to turn, I mean what do you do when you have pain that correlates with parts that you no longer possess? So I did what every confused person in pain does when they have exhausted every possible option in dealing with a chronic problem... I turned to the internet.
