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.
Many of you EndoSisters may have heard, or are following, the use of the biomarker CA-125 as a possible indicator of the presence of Endometriosis. I had my annual pap smear appointment this week and figured I’d ask my doc to see if they’d run blood tests with my usual annual bloodwork.
I went in fully aware and understanding that CA-125 is considered an unreliable test for Endometriosis for many reasons: it could be elevated due to other factors, it may read a false positive, or CA-125 levels may vary naturally throughout our menstrual cycles.
An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis. This study found Endometriosis growing within a muscle: the psoas major muscle.
I have heard from several EndoWarriors that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s). Today we delve a bit deeper into leg pain complaints and Endo. Have upper leg pain? Lower back pain? Tailbone pain? So do a lot of people…but so do a LOT of women with Endometriosis. A 2011 study surveyed 94 people with Endometriosis. Of them, 51% complained of leg pain. Cysts may also be contributing to leg and lower back pain. And although you may have some of these symptoms and think you have sciatic Endometriosis…please be aware that it is considered incredibly rare. And it may just be that your symptoms are a result of pelvic floor muscles being too tight (pelvic floor therapy may help) OR that adhesions and/or Endometriosis has pulled your anatomy out of whack. But, please, do read on:
You may have read some of my previous blogs about biomarkers…blood tests for things which may help doctors diagnose Endometriosis without surgery, such as CA-125 levels. There are a lot of hopes that indicators may help save costly diagnostic surgeries, surgical risks, and painful recoveries.
A study published on May 1, 2016, reviewed 141 past studies and analyzed the data.
Marixsa is a fellow blogger and Endo advocate. She was diagnosed when she was 28 years old. Now 33, her story is a heartbreaking, yet encouraging, one. Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage. Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination. She continues to fight, for herself and for other EndoSisters. And I hold her among my heroes.
Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:
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.
So it’s Sunday, which is Reader’s Choice day, and a friend of mine asked if doctor’s can tell a person has Endometriosis by abnormal blood test results. I know the answer is “no,” but wanted to delve into the different ways Endometriosis may be diagnosed, and the future efforts of modern medicine to help diagnose Endometriosis.