Surgery

Peggy, Roy, & The Endo Inn

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Husband and wife cutting a cake together
Peggy & Roy cutting their birthday cake –  July 2015

You may have heard about Peggy Santa Maria on CBS-TV, LA or read about her in the Contra Costa Times or various online blogs.  I bumped into the CBS-TV LA link, which was aired on their 5pm news on December 25, 2015, and just had to know more about her.  The e-mail address on their site didn’t work, so I reached out to my friend, Margaret, at The Vital Health Institute, who got us in touch.

If you don’t know about Peggy and her husband Roy, they host The Endo Inn.  The what?  As Roy says, “Stay at the Endo Inn while you have your Endo taken out.”  They have converted their guest bedroom into The Endo Inn, a room where a woman and her guest can stay while she recovers from surgery for her Endometriosis, free of charge and for several weeks, if needed.  This includes access to all of the house for cooking, doing laundry, entailing everything that covers “living,” and The Endo Inn becomes “their home.”  Roy and Peggy have been doing this since January 18, 2000.

More about The Endo Inn shortly…but right now I want to focus on the beautiful people behind it:  Peggy and Roy.  I had the pleasure of speaking with Peggy several days ago, spending over an hour on the phone with this purely delightful woman.

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Share your Story : Sarah

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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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Share Your Story : Marixsa

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EndoWarrior logo

Marixsa is a fellow blogger and Endo advocate.  She was diagnosed when she was 28 years old.  Now 33, her story is a heartbreaking, yet encouraging, one.  Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage.  Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination.  She continues to fight, for herself and for other EndoSisters.    And I hold her among my heroes.

Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:

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Share your Story : Tine

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African American woman smiling

Tine is the co-captain of Team Zimbabwe’s 2016 EndoMarch.  She and Nadia are seeking to raise awareness regarding Endometriosis, menstrual health, education the medical community, and letting women in their country know that they are not alone…and this pain is not normal.  Tine is also heavily involved in the NGO As I Am Foundation, a foundation that creates projects that are sustainable for the disadvantaged.  Nadia and Tine have shared their stories in the hope that it will encourage other African girls to be aware and not ashamed.  Tine’s story follows:

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Share your Story : Nadia

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Nadia is the team leader for Team Zimbabwe.  They’re putting together the first ever EndoMarch in their country and are hoping it will be a great success.  They are also hosting a February 27, 2016, awareness campaign with guest speakers to try to not only raise awareness of our illness, but hold in-depth conversations about possible causes and future treatments.  Nadia and I have been talking for the past several days and she’s allowing me to share her story with you today.

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Share Your Story : Amy

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A woman at a music concert

Amy was 29 years old when she learned she had Endometriosis.  Now 38 and living in New Jersey, she has turned her personal battle with Endometriosis into a campaign to help others.

Amy’s Journey: My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

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Bladder & Endometriosis

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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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Is there a link between Endometriosis and Endometrial Hyperplasia?

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Bloomin' Uterus logo surrounded by question marks

One of my readers recently contacted me asking if I could do some research for her.  Her physicians suspect she may have hyperplasia.  What is that, you may ask?  It’s the changing or enlarging of cells or organs which may develop into cancer.  Specifically, she is undergoing tests to see if she has endometrial hyperplasia.  Now what’s that?  It’s when the uterine lining (the endometrium) is too thick.  Her question?  Is there a link between Endo and hyperplasia?

I found this to be very interesting as I had an MRI before my diagnostic surgery which found I had abnormally thick uterine lining.  The first part of my surgery last year was to go in and perform a D&C (dilation & curettage) to remove some of the thick lining.  So now I’m not only researching for my reader, but for myself (although my D&C biopsy came back normal).

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Endometriosis & The Heart

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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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