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Bladder & Endometriosis

| Bloomin' Uterus
Diagram of the urinary system in humans

You’ve likely heard that Endometriosis can grow in all sorts of places inside the body.  Well, the bladder and urinary tract are no exception.  Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.

Symptoms

Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee.  Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…).  This urine-blood may not be perceptible to the naked eye and require a lab test.  And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.

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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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Endometriosis : An Economic Machine

| Bloomin' Uterus
meme with Fry from Futurama holding up money. Text reads Shut up and take my money!

There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis.  And it’s estimated that 5 million in the United States have Endometriosis.  1 in 10 supposedly have, or will have, this disease.  One. In. Ten.

An incurable, recurring disease which causes pain and infertility, among many other symptoms.  A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both.  And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before.  And the only tried and true way to diagnosis the disease with with surgery!

So one thing hit me today.  This disease is a driving economic force!  What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices.  If you live elsewhere and are curious, I encourage you to figure this out.  For all of you living in the States, let’s find out together!

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Have you heard of scanxiety?

| Bloomin' Uterus

Scanxiety…?  It’s a term frequently used in the cancer community.  An overwhelming sense of anxiety before a scheduled scan to check if your cancer has come back.  Am I comparing cancer to Endometriosis? No.  I’m simply stealing their well-coined term.

For any of us Endometriosis sufferers who have had any type of relief either from surgery or medicine, there’s always an underlying fear that it will recur at any time.  The doctors tell us there is no cure.  They tell us it will grow back.  There are a few doctors and patients out there who swear that if you remove all of the Endometriosis during an excision surgery, it will not return. But even the best Endo surgeons out there have documented cases of their patients having recurrence of Endo growth.

Perhaps some get lucky and it doesn’t return.  But for many of us, it does.

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Reader’s Choice : Can Men Get Endometriosis?

| Bloomin' Uterus
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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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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Endo & Liver Function

| Bloomin' Uterus
Diagram of human digestive system

Most of my blogs are started out of my own curiosity, and this one is no different.

I’ve read in numerous sources that people with Endometriosis need to keep our livers in tip-top condition; well-greased and in proper working order.  I’ve seen a few Facebook posts from other EndoWarriors that they have heightened levels of *something* when they have a liver panel blood test done, and they wonder if their Endometriosis may have something to do with that.  That struck a chord with me because I have Gilbert’s Syndrome, which is a liver disease diagnosed through heightened liver panel results.

Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome? My liver blood panel test results?

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Share Your Story : Josi

| Bloomin' Uterus
text on a chalkboard that reads Don't Give Up!

Josi is 19 years old and lives in Torrington, WY.  She was diagnosed with Endometriosis just two months ago.  Like so many women, just knowing there was a cause to her pain gave her a little bit of peace of mind and she has begun her journey toward relief.  Josi hasn’t let this pain stop her from living, as she recently married the love of her life and is moving forward with hers!

Josi’s Journey: I started vomiting constantly and experiencing bad pain at 11 years old. I thought it was anxiety, and didn’t get it checked out for a couple years. At 14, I finally had a scope done to reveal a hiatal hernia. I thought, “finally, this is the cause!” And began taking prescribed medicines for acid reflux and IBS. Nothing helped. Another scope. Nothing new.

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