Share Your Story : Donna

donna

Donna lives in Britain and was in her early 20’s when she was diagnosed with Endometriosis. Nearly 20 years later, she tells us her story…including something that happened to her eyes about 10 years ago.  She continues to live with Endometriosis and her eye-issue.  

Donna’s Journey: Hi my name is Donna, it all started when I was nine years old when I started my periods. My childhood was ripped away from a very young age. I never had normal periods my cycle was every 14 days. When I would bleed I would often drench the bed with blood. My Mum took me to my doctor and he decided to put me on hormone replacement tablets to begin with. The pain I would experience was unreal yet no one really understood. Year in and year out my periods stayed at a 14 to 19 day cycle.

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Silent Endometriosis

Woman holding her index finger to her lips to shhh someone

There are many usual signs and symptoms of Endometriosis.  If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.”  What’s that?  She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis.  Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all.  She suffers from the same invasive disease as the rest of us.  Just in a different way.

A whole slew of questions were raised, which we’ll look into:

  1. Why do some people present with classic symptoms like crippling pain and some don’t?
  2. And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
  3. Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
  4. Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
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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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Reader’s Choice : Can Men Get Endometriosis?

Male symbol

Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THE question…), “Are there any reports of men having Endometriosis?”  I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses.  So, we have our topic for today!!

In rare cases, cis-men develop Endometriosis.  Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment.  Here’s what I could find:

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Share Your Story : Lauren

black and white photo of a glamourous woman in a gown and wearing diamond jewelry

Lauren was diagnosed in 2011.   She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits.  Her story is a heartbreaking one.

Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.

On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.

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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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