L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.
L.’s Journey: This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.
If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.
We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsayand Tabitha, share their own stories about endo on their diaphragm.
Lyndsay was 32 years old when she was diagnosed with Endometriosis. Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us. Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!
Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.
On April 6, 2017, Oncotarget published an article which I’ll be briefly discussing here today.
Researchers took mice and implanted Endometriosis cells inside of of their pelvic regions wanting to see if the Endometriosis cells would migrate to extra-pelvic organs. They later analyzed the organs for microscopic Endometriosis-derived cells throughout the mice and found that it had migrated to the lungs, spleen, livers, and brains in many of the mice.
Well, here I am, alive and doing well! Surgery was on September 21, 2016, and today is my 3-week surgiversary.
In a nutshell : my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions. Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it). AND it disappeared from my liver (doc couldn’t find any there this time). He was able to cut out all of my Endometriosis, except for a lesion that is on my diaphragm. He cut away all of my adhesions and put my organs back where they belong. I’ve still got both my ovaries and fallopian tubes. My uterus was stuck to my bowel, my ovaries and tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall. It just sounds like such a mess…But, he did confirm that my bladder’s exterior AND interior were completely healthy and Endo-free.
So, Wednesday is the big day. I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed. Figured I’d share it in case you didn’t know.
Endometriosis lesions (also called implants) grow wherever they damn well please inside the body. My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow. However, much like an iceberg, more than just the visible tip exists beneath the surface. Some people liken it to an invasive cancer, although not fatal.
I’ve read bits and pieces here and there that Endometriosis can grow on your heart (or the lining of your heart). And have heard from a friend that she may have it on her heart. That’s scary business!
Which got my juices flowin’ to find the documented cases of Endometriosis on the heart, how it was excised (if at all), etc. Here goes ( PS – there’s not a lot out there…)!
Endometriosis is usually found within the pelvic cavity, but has also been known to travel northward and latching onto the liver and diaphragm. It has also been found on the membranes surrounding the lungs. Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes. But today, we focus on the heart…which is also SO INCREDIBLY RARE. Please, I’ll preface it by saying this is so super duper rare.
Most of my blogs are started out of my own curiosity, and this one is no different.
I’ve read in numerous sources that people with Endometriosis need to keep our livers in tip-top condition; well-greased and in proper working order. I’ve seen a few Facebook posts from other EndoWarriors that they have heightened levels of *something* when they have a liver panel blood test done, and they wonder if their Endometriosis may have something to do with that. That struck a chord with me because I have Gilbert’s Syndrome, which is a liver disease diagnosed through heightened liver panel results.
Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome? My liver blood panel test results?
I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!). I was diagnosed when I was 35 years old in 2014.
My Journey: I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal. I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow. I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this. Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…