Hysterectomy

Whether partial or full, a hysterectomy is not a cure for Endometriosis. It may help relieve some symptoms (and in some women: all), but there is no guarantee.

Share Your Story : Jen

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Smiling Caucasian woman in a big floppy white hat and sunglasses

Jen reached out to us to share her story about her diagnosis with Endometriosis.  Now seven years after she found out she had the disease, see how she’s doing today…AND if you’re in the Sarasota, FL, area and hosting any Endo events or need a local EndoSister, here’s your gal!

Jen’s Journey: I was 23 when I was diagnosed with endometriosis, it took Doctors 5 years to diagnose me, I was lucky it wasn’t longer like most. I never had bad periods, but I did have extreme cramping & headaches. I feel pregnant a lot of the time & unfortunately I have to deal with that feeling knowing I’ll never have another child because I had a complete hysterectomy when I was 28.

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Share Your Story : Donna

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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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Share Your Story : Kristina

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flaming text that reads "my body has been through hell"

Kristina was 24-years-old when she was diagnosed with Endometriosis, after the birth of her beautiful daughter.  Nearly a decade later, she tells us her story…

Kristina’s Journey: I received my diagnosis weeks after having my daughter in 2009. Turns out I could have been dealing with this since I had started having cycles but none of my doctors thought to even test and I had no idea what Endo was until I got pregnant. After having beautiful Kara my period started like normal but the pain was so intense. I went to my OB and she had me try the pill first, but that didn’t help.  Then we tried Depo and that made it worse. In the mix of all this I also have been dealing with multiple hernia repairs so one could imagine my hell some months.

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Adenomyosis

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The word Adenomyosis covered in little spots and lesions

April is Adenomyosis Awareness Month.  Ado-what-o?  A disease, similar to Endo; some say Ado is the cousin to Endometriosis.  And many people with Endo also suffer with Adenomyosis.  So, I figured I’d spread a bit of awareness of Ado during this month and learn something in the process.

A few folks who attended our Endo walk suffer also from Adeno.  And one who showed up to our last Endo support group meeting suffers from Ado (but not Endo).  It’s a term I’m beginning to hear a lot more about.  But, what is it?

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Share your Story : Kyla

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Text that reads "I don't know how to proceed at this point..."

Kyla is 34-years-old.  Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…

Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.

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Share Your Story : Hailey

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A husband, wife, and two sons standing in a doorway

Hailey lives in Okalahoma.  When she was 22 years old, she received her Endometriosis diagnosis.  Now, over a decade later, she offers some stellar words of advice!!

Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.

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Endometriosis & The Bowel

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Diagram of human bowels

As you may know, Endometriosis is not limited to just your reproductive bits & pieces.  It can implant, grow, and fester in many places; the bowel included.  But what does that mean? How do you know if it’s on your bowel?  Today’s blog will go into that…Read on, dear Reader…read on.  Word of warning : I will be using words like fart and poop! Why dance around the subject with flowery words when I feel like I’m a giggly 12-year-old girl?

It is estimated that between 5-15% (and some even doctors guess it’s actually between 3-34%) of women with Endometriosis suffer from Endo on their bowels.  Bowel Endometriosis may affect the colon, the rectum, the large intestine, the small intestine, the colon, or the sigmoid colon.  The implants may be physically located on the bowels, or even just located adjacent to them in areas like the Pouch of Douglas, uterosacral ligaments, or rectovaginal septum. The close proximity of the inflamed and irritated lesions may be enough to induce bowel Endometriosis symptoms.  And these symptoms may also be caused by adhesions pulling or twisting the bowels.

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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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Endometriosis & The Heart

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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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