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:
There are many usual signs and symptoms of Endometriosis. If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.” What’s that? She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis. Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all. She suffers from the same invasive disease as the rest of us. Just in a different way.
A whole slew of questions were raised, which we’ll look into:
Why do some people present with classic symptoms like crippling pain and some don’t?
And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
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.
Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THEquestion…), “Are there any reports of men having Endometriosis?” I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses. So, we have our topic for today!!
In rare cases, cis-men develop Endometriosis. Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment. Here’s what I could find:
So there’s an article that was recently published that has a lot of the EndoCommunity in an uproar today on Facebook. The article was title, “How your sex life may influence endometriosis,” published on May 1, 2015, by MedicalXpress. My initial knee-jerk reaction last night was to be furious.
I interpreted the article as saying that sex can cause and affect Endometriosis growth; to be more precise: seminal fluid can affect Endo growth. Semen. Baby-MoJo. I’ve had my Endo pain since my early years in high school. And I did not have sex until I was 21. And my cramps were pretty damn bad back then. How dare a study suggest that sexual activity had anything to do to heighten my endo symptoms or progression. And my outrage was further fueled by others’ reactions about the same conclusion.
I’ve decided to take my time, read the study slowly, and try to digest what it is the study is trying to tell us. Wait. Step back. Breathe, breathe. Relax. Now go read the study…