Endometriosis & the Eyes

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

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

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

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

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

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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Share Your Story : Cyntelle

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 : Dimples

A smiling baby and text that reads People with dimple have a divine role in this universe: smile

Dimples, who wishes to remain anonymous, was diagnosed with Endometriosis when she was 20.  Now 21 and living in Cincinnati, Ohio, she’s started her EndoJourney last year.  She’s also recently started her Blog, EndoAnonymous.  And now she shares her story with us .

Dimple’s Journey: Hi! My code name is Dimples. ( my blog is anonymous). Starting to write this post has made me realize that sometimes I still operate in the “denial” stage of acceptance. Anyway it’s pretty obvious my diagnosis is still rather fresh, my Endo was found because my body has a surprising ability to produce large cysts on a whim. My periods had always been a little… off. My mother being the only female in the house and uncomfortable talking about these things assured me, the pain was normal even as it got worse, that the large clots happen, that some women’s periods were simply heaviers.

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Share Your Story : Andy

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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