Medications

Endometriosis on your skin

| Bloomin' Uterus
Diagram of human skin

It’s about time I research more about Endometriosis being found in places other than your pelvic region.  We’ve already covered lungs, spine, and eyes, and today we’re going to delve into cases of Endometriosis and skin.  Skin? Yes, skin.  I’ve read that it’s rare, just like the other areas outside of the pelvic cavity…but, it does occur.  Some theorize it is implanted via the lymphatic orpro vascular systems; others think the cells are transplanted via surgery.

There seem to be two common categories of Endometriosis and the skin : spontaneous Endometriosis and scar Endometriosis.  Spontaneous Endo simply appears in random places on healthy skin (cutaneous or subcutaneous).  Scar Endo is found within scar tissue from prior surgeries or injuries.  It appears that surgical excision/removal of the Endometriosis lesions from the skin is the most common and effective way of handling the lesions.  Some surgeries may leave defects, which may (or may not) be repaired or rebuilt with a surgical mesh.  Some studies suggest that hormonal treatment may be too harsh for the patient for solitary lesions.

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Endometriosis & the Eyes

| Bloomin' Uterus
Potted barrel cactus with googly eyes

During my recent research regarding Endometriosis growing on the lungs and spine, I’ve also bumped into references to incredibly rare cases where it’s been found on the eyes, or the structures near the eyes.  THE EYES!  Ugh.  Makes my skin crawl.  So I figured I’d delve a bit into that today.

Most of all of the books and webpages I’ve read that talk about Endometriosis say it can grow on the eyes, but I’m having an extremely difficult time finding case studies or reports online about it.

In 2008 a case report was published of a 13-year-old girl would bleed from her tear duct during her menstrual cycle.  After imaging studies and other tests, it was suspected that she had Endometriosis inside her nasolacrimal canal (it houses the tear ducts); however, due to the location of the tissue, biopsies (and a confirmed diagnosis) were “impossible.”  For treatment, she was put on birth control.  If that didn’t control her symptoms, she would undergo hormone therapy.  I cannot find any follow-up studies on this poor girl (see photograph below).

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Endometriosis & the Spine

| Bloomin' Uterus
human spinal column

Endometriosis and THE WHAT?  You mean to tell me that this disease can be found on your…spine?  A disease typically diagnosed by gynecologists can grow there?  Okay, now this is like some bad sci-fi horror film…But alas…it’s true.  A girlfriend dropped the bomb last week that she has it on her spinal cord.  So now it’s time to pick my jaw up off of the ground and hit the books.  What the hell, Endo.  Really? Is nothing sacred?

Spinal Endometriosis:

Endometriosis on or in the spinal cord, vertebrae, or nerves is considered extremely rare.  However, it has been found to be wreaking havoc for many women.  It can cause symptoms of back pain, weakness, incontinence, sciatica pain, radiating leg pain, groin pain, and monoparesis (weakness to the point of near-paralysis), just to name a few.  These symptoms may always be present, may only be present during your menstrual cycle, or may worsen during your menstrual cycle. On top of those symptoms, the Endometriosis also does it’s usual thing: inflammation, scarring, creates pain, etc.

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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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Going to the ER : “You Junky Pill Popper!!!”

| Bloomin' Uterus
521869846_1ebcd9c564_o

I’m one of the lucky ones: I’ve never had to to go the Emergency Room because of my Endo pain.  Before my surgery, I’d always just sucked it up, endured, lumped into a ball, hugging my heating pad, crying.  Never had I thought to go to the ER; I figured it was normal period cramps.

But many of my fellow EndoWarriors routinely do.  Their uncontrolled pain is so horrible that they take the trip to the ER, fill out the forms, pay the co-pay, wait for hours, and are poked, prodded, and screened…some may receive the help they seek.  But others are denied relief and are accused of being a pill-popping addict, a junky, a liar.  Others are screened for STDs or yeast infections.  Others subjected to embarrassing pelvic exams.  This is unfortunate and outrageous.

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Share Your Story : Lisa

| Bloomin' Uterus
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 : Ginny

| Bloomin' Uterus
A blonde woman smiling

Ginny was diagnosed when she was 31.  Now 37, Ginny lives in Arkansas with her wonderful husband.  Despite this happy ending, she continues to suffer from the pain and effects of Endometriosis, and continues ongoing treatment…and a hunt for answers.

Ginny’s Journey: My first hospitalization for severe abdominal pain happened at age 16. The intensity of the pain and internal bleeding had caused my blood pressure to drop to 70/30 and my body to go into shock. It was the first of many ER visits for similar symptoms but the only one taken seriously enough to admit me to the hospital overnight.

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Share your Story : Aubree

| Bloomin' Uterus
A woman with brown hair sitting cross-legged in a park

Aubree was 29 when she was diagnosed with Endometriosis.  Now 33, she lives in Colorado and has found not only acceptance of her disease, but peace.  And she’s found her healing through self-love and a natural holistic approach.  She has even written a book about her journey and her path to inner-peace and healing.

Aubree’s Journey: I suffered with extremely painful periods from the very beginning. I complained about them for years to my doctors, but nobody really paid them much attention. One of my family doctors prescribed me Ibuprofen, but this didn’t touch the pain.

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Lupron Depot : My Experience

| Bloomin' Uterus
Syringe and needle for Lupron Depot injection

Many of you know I fondly refer to my Lupron Depot treatments as “Liquid Crazy injections.”  I’m happy to say that January 19, 2015, was my last Lupron Depot injection for my Endometriosis!  I had a total of six months treatment; 1 injection per month.  I was also taking the “Add Back” pill, Norethindrone, on a daily basis.

I figured I’d write about my side effects and symptoms, just in case anyone else was going to be starting or has started, the same injections. I’d love to compare notes and see how you’re feeling if you had Lupron.  Most of the side effects I experienced vanished in about 2 months…but I did suffer from insane night sweats for a year-and-a-half afterward!  And my fingernails have never recovered…I’m also wondering if you have any long-term side effects that you attribute to the Lupron Depot injections…

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