Question from our Reader, Candace

Candace needs your help, feedback, and advice!  She writes:

Hello, I have been an “endo” sufferer for MANY years….many, many, MANY surgeries and a hysterectomy with surgeries to follow! I don’t ever pretend to be an expert on the topic and this question certainly has thrown me for a loop….I’m hoping one of you can help!

I have had a “mystery illness” since February. Extreme fatigue, hoarseness, and right side facial pain, numbness. I have had a slew of tests all of which come back “ok”. Just this past weekend, I started with my “typical” “endo” pain. I am just wondering if this all could be related to “endo.” Anyone else ever experience facial issues related to endo?

I am looking forward to any and all responses. I have been debating on calling my specialist…. Thank You in Advance!

If you comment below, I’ll pass it on to Candace. ❤

Share your Story: Nathaly

Woman standing holding a box that reads "Happy Birthday"

Nathaly was diagnosed with Endometriosis, Adenomyosis, and fibroids when she was 26 years old.  A year later, she shares her story with us.  And, Nathaly will be walking on March 25th with friends and family at our Endometriosis Awareness walk! Looking forward to meeting her ❤

Nathaly’s Journey: My story starts when I was only 11 years old. I often found myself curled up in a ball waiting until I would finally pass out so the pain could be over. My mother was very strict growing up so birth control was out of the question, even if it was for medical purposes.

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Endometriosis in Captive Critters?

monkey in a tree
Female Mandrillus Sphinx

So we’ve previously read about a German Shepherd being diagnosed with Endometriosis. Today we’re going to talk about Mandrills (a form of primate that used to be considered a Baboon) who had been diagnosed with Endo. I’ve read a lot of previous studies where Endometriosis was purposely implanted into critters for study and dissection, but these primates weren’t for study.

There was a study from 2012 about a Mandrill that had died after showing signs of weakness and peritoneal bleeding.  Upon autopsy they found her uterus was covered in blood clots and it was stuck to her ovaries and pelvic wall.  The biopsy confirmed she had Endometriosis.  This is considered the first confirmed case of Endo in a Mandrill.

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Chronic pain affects your brain

drawing of a human brain in a jar

So a lot of people with Endometriosis suffer from chronic pain…hell, a lot of people without Endometriosis suffer from chronic pain.  There are theories and studies out there that suggest chronic pain affects memory, cognitive function, and mental health.  Not only does Endometriosis present painful symptoms, but it’s also incurable.  And there are many people who do not get any symptom-relief from any of the treatments available.  You can see where this may cause some “mental health” issues.  Here’s some interesting tidbits on how pain affects brain activity and function.

What is gray matter all about?  It maintains memory, sight, hearing, emotions, speech, impulse control, and executive functions (reasoning, problem solving, cognitive functions, etc.).  Gray matter volume naturally decreases with age.  So…it happens naturally.  Chronic pain may just spur it along a bit more.  Studies have indicated that children who suffer from chronic pain have a greater loss of gray matter volume when they are adults.

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Share Your Story : Alexandra

Woman with brown hair wearing a shirt that reads "Fight like a (yellow ribbon) girl."

Alexandra is a fellow blogger out of Brisbane, Australia.  Today she share’s her Endometriosis journey with us.  She was diagnosed when she was 20, and now five years later here she goes, starting us out with a *bang*:

Alexandra’s Journey: “Uterus.” There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. Awkward.

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Endometriosis & Iron Levels

two iron dumbbells
(…no, not that kind of iron)

So, if you’re reading this you probably already know a little bit about Endometriosis.  Recently at our support group meeting, the question of iron levels and anemia came up.   With all that bleeding, can we suffer from anemia or an iron deficiency?

And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk: could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?

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Share your Story : Sarah

Sarah’s symptoms began when she was 13 years old…but her diagnosis not until she was 34! Why not? How is that possible?  It happens more than it should…curious? Read on, Dear Reader, read on.

Sarah’s Journey:  I don’t think I’ve had a single day where my female reproductive organs were active and NOT pissing me off. I got my period one day in summer when I was thirteen years old. And it just … didn’t stop. For the first year of my menstruating life, I bled for 25 days out of thirty. It was ridiculous, and led to me having anemia and needing fluids almost all the time. My well meaning GP at the time said my body was just “adjusting”.

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Endo & Liver Function

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 : 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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