Endometrioma

Endometriosis & The Lungs

| Bloomin' Uterus
Graphic of human lungs

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.

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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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Endo & Ovarian Cysts

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Illustration of an ovary and fallopian tube

Many women with Endometriosis suffer from recurrent cysts on their ovaries.  But why? And what exactly is a cyst?

What is a cyst?

A cyst is an abnormal sac inside your body, completely enclosed, and it may contain liquid, gas, pus, fluids, semi-solid, or solid materials.  Imagine a blister, full of puss, tight and ready to be popped.  Now imagine that inside your body : a cyst is kind of like that.  However, if a cyst is full of puss, it is known as an abscess.  Cysts are typically non-cancerous, although some may lead to cancerous growths or tumors.  They are usually caused by an infection or clogging of the glands, although they may be caused by genetics, chronic inflammatory conditions, injury, cellular defects, or even parasites.

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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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EndoInvasion : Stages

| Bloomin' Uterus
A stage with the Bloomin' Uterus logo centered on it in a spotlight
Our Uterus : center stage!

So there are four “Stages” of Endometriosis.  It’s the doctors way of categorizing the depth of the EndoInvasion in our bodies.  It was developed by the American Society of Reproductive Medicine.   Diagrams of the various stages can be in an article published in Fertility & Sterility back in 1997.

I didn’t know my Stage level and had to ask my doctor.  My Endometriosis was Stage 4, the most severe it can get. Probably because it was brewing inside me undetected for nearly 2 decades. Ugly disease. (Update: As of June 6, 2019, I’ve now had a total of four excision surgeries; each one classified my illness as Stage 4).

The interesting things about Stages: the Stage Level doesn’t necessarily dictate our symptom or pain levels.  Someone with Stage 1 can have severe pain, while someone with Stage 4 may not even realize it.  Just one more mystery o’Endo.

So what are these Stages?  Here ya go:

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