Share Your Story: Leidy

A woman standing in front of a grassy lawn wearing a pink sweater, gray hat, and sunglasses

Leidy lives in Germany and was 35 years old when she was told she had Endometriosis. Now 42, she would like to share her story with everyone cares to read it. A battle which literally spans the globe in search of answers, a series of numerous misdiagnoses, and Leidy is one hell of a Warrior.

Leidy’s Journey:   I am now 42 years old but since my first period, I have had problems. 

My main problem is in my bowels. Which misled my specialists to find the correct diagnosis. The only issue I had, related to my period, was irregular bleeding. 

Each month I bled during my ovulation. My period lasts sometimes more than a week. And I bled during sexual intercourse. The pain during the period was not severe and Ibuprofen usually was enough to alleviate the pain.

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Share Your Story: Melissa

Man and woman standing side by side

A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…

Melissa’s Journey:   I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.

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Endometriosis & the Diaphragm

Courtesy of Wikimedia

If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.

We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

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Inguinal Hernia & Endometriosis

Inguinal canal in female courtesy of https://www.slideshare.net/vernonpashi/surgical-anatomy-of-the-inguinal-canal

Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!

What is AN inguinal hernia?

An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.

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Share Your Story: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

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Endometriosis & the Pancreas

Diagram of liver, stomach, pancreas, and gallbladder

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

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Share Your Story: Diane

Tattoo that reads "Start Somewhere"

Diane shares her Endometriosis journey with us today.  And she’d like to remind us all when life hits us too hard and we’re stuck or immobile…we have to start somewhere. One step at a time.

Diane’s Journey:  So, I’m officially diagnosed with chronic pelvic pain, recurrent peritoneal cysts, and precancerous cervical cells. I did have an exploratory lap in 2016, to remove suspected ovarian cysts. They turned out to be peritoneal, and I also had “extensive adhesive scar tissue”. Endometriosis was added to my records at that point, but I was seen at a teaching hospital. The residents that saw me and performed my surgery never sat down and discussed what they found.

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Share Your Story: Pam

quote: A hysterectomy doesn't resolve endometriosis.  I guess I was naive in 1999; were the doctors also?

Pam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

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Share Your Story: Janis

Black and white photograph of blonde, smiling Janis

Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

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