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 : Lisa

A red-headed pirate laughing and holding her tankard of ale

I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!).  I was diagnosed when I was 35 years old in 2014. 

My Journey:  I started my period when I was 12 or 13 years old.  I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal.  I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow.  I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this.  Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…

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Share Your Story : Ginny

A blonde woman smiling

Ginny was diagnosed when she was 31.  Now 37, Ginny lives in Arkansas with her wonderful husband.  Despite this happy ending, she continues to suffer from the pain and effects of Endometriosis, and continues ongoing treatment…and a hunt for answers.

Ginny’s Journey: My first hospitalization for severe abdominal pain happened at age 16. The intensity of the pain and internal bleeding had caused my blood pressure to drop to 70/30 and my body to go into shock. It was the first of many ER visits for similar symptoms but the only one taken seriously enough to admit me to the hospital overnight.

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Endometriosis Adhesions : what are they?

taffy pulling machine

A lot of women who suffer from Endometriosis also have adhesions.  You may have heard the term “adhesions” but just don’t know exactly what they are, or what they do. Well, I’m here to help!

After my first excision surgery in June of last year, I was told that I had adhesions which needed to be cut and/or removed. What the heck?  My doctor described it as scarring which acted like spider webs, stretching from organ to organ, entangling my organs, or even stitching two organs together.  These restrictions are known to cause intense pain if the organ’s movements or function are limited in any way. They may also cause infertility if the Fallopian tubes are blocked due to the woven-web of adhesions, preventing the egg from traveling to their wonderful, spongey, wet, warm home.

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EndoInvasion : Stages

A stage with the Bloomin' Uterus logo centered on it in a spotlight
Our Uterus : center stage!

So there are four “Stages” of Endometriosis.  It’s the doctors way of categorizing the depth of the EndoInvasion in our bodies.  It was developed by the American Society of Reproductive Medicine.   Diagrams of the various stages can be in an article published in Fertility & Sterility back in 1997.

I didn’t know my Stage level and had to ask my doctor.  My Endometriosis was Stage 4, the most severe it can get. Probably because it was brewing inside me undetected for nearly 2 decades. Ugly disease. (Update: As of June 6, 2019, I’ve now had a total of four excision surgeries; each one classified my illness as Stage 4).

The interesting things about Stages: the Stage Level doesn’t necessarily dictate our symptom or pain levels.  Someone with Stage 1 can have severe pain, while someone with Stage 4 may not even realize it.  Just one more mystery o’Endo.

So what are these Stages?  Here ya go:

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