Share Your Story : Marixsa

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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 : Nadia

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

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

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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The Wurn Technique : Improve Infertility and Adhesion Pain?

Logo for Clear Passage Physical Therapy

Have you heard of the Wurn Technique?  I hadn’t until a few weeks ago when I received an email from Clear Passage with links to a recently-published study showing the Wurn Technique can improve infertility issues, as well as reduce Endometriosis pain.  Are they claiming to cure Endometriosis?  Not at all.  But they are claiming their technique may help reduce your pain and may increases your chances of becoming pregnant.  So, curious as I was, I read up on it, asked questions, and now I present this information to you!

Personal Note: I am not endorsing Clear Passage or the claims made in these studies or their webpage.  I am simply pointing you, the curious reader, in a direction you may not have located otherwise.  Always, always, ALWAYS do your own research.  And choose a treatment that feels right for you.  If you have any questions about the Wurn Technique, please reach out to Clear Passage by email or 1 (352) 336-1433.  They will answer your questions and, if you so desire, schedule a phone consultation with one of their therapists (for free) to see if this is a viable treatment option for you.

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Endometriosis & The Heart

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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Share Your Story : Michelle

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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Endometriosis on your skin

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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Meet Dr. Idhaliz Flores Caldera

Dr. Idhaliz Flores Caldera
Idhaliz Flores Caldera, Ph.D.

Many of you have read my blog entry Stress Levels May Affect Endo. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research.  Dr. Appleyard and Dr. Flores Caldera have agreed to answer some questions I’ve posed to them.  Both doctors are incredibly busy; however, have still managed the time to answer these questions!

Q&A Session with Idhaliz Flores Caldera, Ph.D.

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