Stories of Others

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 : Rebecca

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A young woman in a hospital bed giving two thumbs up

My Journey with Endometriosis & Adenomyosis by Rebecca L. Gibson

I was always healthy and active in sports while growing up. In 2008, I married my childhood sweetheart and we began our life together. Everything changed in 2009 when I developed symptoms of endometriosis. Endometriosis (en-doh-mee-tree-oh-sis) is an extremely painful condition where tissue resembling – but not the same as – the endometrium (lining of the uterus) is found elsewhere in the body, outside the womb. Although symptoms may indicate endometriosis, an official diagnosis can only be made through surgery. Common symptoms include, but are not limited to –pelvic pain apart from menses, debilitating menstrual pain, backache/leg pain, painful intercourse or pain associated with sexual activity, painful bowel movements, fatigue, bloating, constipation/diarrhea, which may worsen during menses, pain with exercise, painful pelvic exams, painful urination, sciatic pain, infertility/pregnancy loss.

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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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Share Your Story : Nat

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Yellow awareness ribbon with text that reads I'm a Non-binary Endo Warrior

Nat was 22 years old when diagnosed with Endometriosis.  Now 33, Nat wants to share a very important message to the Endo Community, crossing gender barriers and reaching out to an often-neglected group of EndoWarriors.

Nat’s Journey: We need to stop making illness about gender – a.k.a I’m a boi with endo. Under my list of illnesses/disabilities, I mark endometriosis as being one of the most debilitating pain wise. I mean yes I’ve been pretty much out of action this past week thanks to vertigo, but that pales in comparison to the pain of a first full day of menstrual bleeding that chose this morning to kick in and sent me crawling back under the covers. I’ve gone from anti-vertigo meds to the strongest painkillers I have in the flat that aren’t codeine and a heat pack being applied across my tummy in order to just sit up. And believe me when I say that I WISH I lived in America and could go buy a tub of Aleve rather than a tiny pack of NINE of the same effing tablets for £5 (around $8 USD), yes that’s right for NINE of them.

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Share Your Story : Michelle

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Text that reads don't be fobbed off

Michelle had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 21.  Now 52, she lives in Bury, Lancashire in the UK. Her story is one of the more dramatic ones I’ve read so far:

Michelle’s Journey:  I had excruciating period pain from being 16. My doctor at the time told my mum I was hypochondriac and could not take pain. We all believed him.

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