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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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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Share Your Story: Kimberli

Smiling woman dressed in yellow

After a long battle for answers, Kimberli was finally diagnosed with Endometriosis at 27 years old. Four years later, she’s forging ahead with the disease, spreading awareness, raising hopes and spirits, and supporting EndoWarriors everywhere!

Kimberli’S JOURNEY:  

I remember getting my period at age 11, one of the first out of my group of friends. Besides heavy bleeding, I didn’t think too much about anything being ‘wrong’. I was athletic, I played all sorts of sports, ate fairly healthy for a kid and was always playing outside or doing things with my friends. My immune system was pretty crappy though, I got sick a lot. Just your typical strep throat and flu type sicknesses. It wasn’t until high school, where I really started to notice some more symptoms. Bowel issues, severe headaches, horrible cramps.

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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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Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

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I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

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Share Your Story: Melanie

Melanie standing in front of a cart of fresh baked artisan breads

Melanie Rossiter is writing a book about Endometriosis (which is available on Amazon) and wanted to share her Endo journey with us today.

Melanie’s Journey:

This story is taken from the introduction of my book ‘Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis’.

My struggle back to health began two weeks after the birth of my second child. I had to have postnatal emergency surgery for a retained placenta, which was followed by pain, adhesions (scar tissue sticking tissues or organs together), and endometriosis.

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Share Your Story: Mollie

Quote: Her doctor told her she had sorted it out. That it was done. The end was gone!  But when she complained of ongoing pain her doctor said the pain was all in her head and she had some type of PTSD

Mollie was diagnosed with Endometriosis when she was 20.  Now a year later, she shares her journey with us.

Mollie’s Journey: It all seems full circle to me after about 7 years.

At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.

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Excision vs Ablation

Graphic depicting excision vs ablation
Detail,”The Endo-Graphic” by Sarah Soward.

So, you may be reading this because you have a surgery pending, or you’ve had surgery and want to know if it was the “right” one.  Well, when it comes to Endometriosis, there are typically two ways of dealing with the lesions that I’ve read of. If there’s more, share with me, please!  Whichever way your surgeon opens you up : laparotomy or laparoscopy, robotic-assisted or not – your surgeon will still need to decide how best to handle the lesions he or she finds within your body.

  1.  Excision – removing the entire lesion by cutting a margin of healthy flesh around the lesion – see the graphic above, scooping the healthy soil around the flower to get the roots, and then some.
  2. Ablation – destroying the lesion by burning the surface away.  Like freezing off a mole or wart, but burning away the Endo.  The graphic above with the flamethrower may leave the roots of the lesion, and unhealthy Endometriosis tissue, behind…
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My upcoming surgery

DaVinci robot for surgery
Photo courtesy of Wikipedia

So, Wednesday is the big day.  I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed.  Figured I’d share it in case you didn’t know.

Endometriosis lesions (also called implants) grow wherever they damn well please inside the body.  My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow.  However, much like an iceberg, more than just the visible tip exists beneath the surface.  Some people liken it to an invasive cancer, although not fatal.

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