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.
The authors suggest, “…that endometriosis in locations distant from the pelvis may be more common than previously recognized. Endometriosis should be considered a systemic disease that is often subclinical.” They suggest that these Endometriosis-derived cells residing in other organs may influence symptoms of Endometriosis, such as fatigue, eating disorders, sociopsychological issues and other symptoms which lessen our quality of life. It also discusses thoracic Endometriosis and Endometriosis on the liver, and those side effects. Further research, of course, is always needed.
The entire published study is free for us to read and is very, very interesting. I fully encourage you to click here and read the study and the conclusions. And please feel free to correct me if you feel I’ve misread the science-y bits. ❤
Oncotarget – (Article; April 2017) Micrometastasis of Endometriosis to Distant Organs in a Murine Model
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Kyla is 34-years-old. Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…
Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.
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.
I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs. An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood. Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month. Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc. Here goes! This is NOT meant to scare you. Just educate us all, including myself.
Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver and diaphragm. It has also been found on the membranes surrounding the lungs and heart. Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes.
Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart. It was first medically documented in 1953. Today, we focus on the lungs.