uterus

Endometriosis & The Heart

| Bloomin' Uterus
Diagram of human heart

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.

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Reader’s Choice : Can Men Get Endometriosis?

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Male symbol

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 THE question…), “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:

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Share Your Story : Lauren

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black and white photo of a glamourous woman in a gown and wearing diamond jewelry

Lauren was diagnosed in 2011.   She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits.  Her story is a heartbreaking one.

Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.

On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.

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Share Your Story : Lisa

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A red-headed pirate laughing and holding her tankard of ale

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…

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Share Your Story : Cyntelle

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African American woman sitting in a car

Cyntelle was diagnosed with Endometriosis when she was 29 years old.  Now 32 and living in Savannah, GA, Cyntelle is the mother of a beautiful son. She loves dancing and music, and has recently begun a blog of her own.  Cyntelle’s Endo journey is quite a bumpy one…

Cyntelle’s Journey: After I had my son (October 2008), I was still vomiting and had terrible abdominal pain. My belly was swollen to the point that people were asking if I was pregnant again (impossible). December 2008 I went to the ER. The ER doc said I had a kidney infection and possibly an STD. I was a single, black, young mother so of course I had an STD? Right? Wrong. No STD was found and I was 25. Not as young as the high school age they thought I was. I digress. :)They performed lots of tests, I had an ultrasound, everything. The PA suggested I had a small cyst on my left ovary. ER doc stuck with kidney infection. What do I know? I’m no doctor.

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Share Your Story : Andy

| Bloomin' Uterus
text that reads Live every day to its fullest

Andy was diagnosed with Endometriosis when she was 23.  Now 29, Andy hasn’t let her diagnosis slow her down:  She’s earned her Ph.D., is always active and continues to increase her physical activity.  She also loves to bake and spend time with her family and fur-babies on the coast of Australia.  Her positive attitude is an inspiration!

Andy’s Journey: I was diagnosed with endometriosis in 2008, during the first year of my PhD at the age of 23, after five years of severe pain and being bounced around from one doctor to another. Some doctors told me I was overacting and that it was “just period pain”, whilst one doctor told me it was PCOS. From the age of 18 I was taking Yasmin for the control of a few cysts a scan had found on my ovaries at that age. However Yasmin did nothing to control my pain and in fact after five years I developed more cysts and horrible headaches.

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Share Your Story : Courtney

| Bloomin' Uterus
A woman with brown hair wearing sunglasses

Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old.  Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.

Courtney’s Journey:  I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!

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