It’s the classic tale of many other endo sisters. Years and years of unexplained pain and horrible periods. My abdominal pain and bloated endo belly were constant during my childhood… and then I got my period at 11 years old and everything changed. This unleashed heavy bleeding and clotting, severe menstrual cramps, bloating, nausea, lower back/pelvic pain and leg cramps. My mother and grandmother both suffered the same way, I thought this was my new normal and part of being a woman. You were supposed to get your heating pad out, take some pain medication and deal with it.
Flash forward to 2012, my college graduation day. I had a searing abdominal pain that ripped right through me unlike any other pain I’d felt before. I somehow got through the ceremony, I’ll chalk it up to years of practice of pretending everything was OK on the outside when I was actually dying of pain on the inside. After the ceremony I laid down in the car and told my mom it felt like I had been shot in the shoulder… and the pelvic pain had not subsided at all. I finally went to the ER the next day and MRI imaging showed I had grapefruit sized cysts (endometriomas) in both ovaries and they had ruptured. The fluid had reached my diaphragm causing the referred shoulder pain.
After my first surgery in 2012 I was diagnosed with Stage IV endometriosis and that it had all been removed. I was sent on my merry way with the idea that my endometriosis was gone and would stay suppressed as long as I took my birth control pill. My symptoms only got worse. Sound familiar? I had another endometrioma rupture in 2014 which meant another surgery and a new pill to try but this time I was told it was 100% gone.
In 2017, I had surgery number three. I felt worse than ever, I was gaining weight from the birth control pill and inflamed all over. I could hardly make it up the stairs or get out of bed. I took matters into my own hands and decided that I was going to make the switch to an anti-inflammatory diet and incorporate light exercise. I lost 35 pounds over the next 2 years and felt somewhat back to normal but was still suffering from endometriosis symptoms.
One of my biggest complaints through my endometriosis journey has been constant mystery hip pain that radiates down my leg into my foot and worse during my period. I thought it was sciatica but was unable to find any answers with testing. I researched for years all that I could about endometriosis and sciatica hip pain and the doctors never believed me when I asked if there was a correlation between the two.
One day at an appointment, my pelvic physiotherapist suggested I get a referral to see a new endometriosis surgeon who specializes in endometriosis and nerves. This changed everything. My new doctor ordered an MRN (an MRI that focuses on nerves). The results came back and he told me that the endometriosis tissue attached to my sciatic and pudenal nerves and will need to be removed. I was also diagnosed with Adenomyosis which explains the hard bloated belly and pelvic pain I frequently experience. A sense of relief washed over me, I wasn’t crazy, I wasn’t making it up. My pain is real.
As I wait for my excision and nerve dissection surgery in 2021, I am doing all I can for my body to be prepared. Follow along with me as we get real about all things endometriosis.