Genevieve felt the symptoms of Endometriosis since her first period. She was diagnosed when she was 21 years old, and is now 28. She shares her story with us today.
Genevieve’s Journey: I thought I was dying.
I was on a family holiday, lying in our camper trailer bed with my mum and my little brother. I was 12. I think my poor mum, who was a nurse, was at her wits end by sunrise, and had given up trying to diagnose me after an hour or so. The pain in my abdomen had me convulsing, crying and curled up into a ball clinging my legs to my chest for dear life while I rocked back and forth. I was given some Panadol, and while my mum and brother proceeded to sleep, I made the cold, windy walk up the hill to the campsite toilets over a dozen times throughout the night thinking, “This is it. I’m going to be one of those news articles, where a young girl dies a mysterious death in a caravan park”. I remember sitting in the showers in the middle of the night, on my thongs (so I didn’t get butt tinea from the shared bathroom) and just feeling like I should have been at a hospital. But I was so desperate not to cause a scene or be put on to a helicopter in front of the entire Robe Caravan Park.
After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis. Two years later, she shares her story with us.
Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didn’t do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.
Here I go again, once more intrigued by Endometriosis growing in odd places inside the body. Today I’m going to focus on the appendix. I’ve read that many Warriors have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis. But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.
Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo. Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery. Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix. But…knowledge is power.
Nathaly was diagnosed with Endometriosis, Adenomyosis, and fibroids when she was 26 years old. A year later, she shares her story with us. And, Nathaly will be walking on March 25th with friends and family at our Endometriosis Awareness walk! Looking forward to meeting her ❤
Nathaly’s Journey: My story starts when I was only 11 years old. I often found myself curled up in a ball waiting until I would finally pass out so the pain could be over. My mother was very strict growing up so birth control was out of the question, even if it was for medical purposes.
Patti was diagnosed with Stage IV Endometriosis when she was 21 years old. Today she is 52 years young and lives in Ontario, Canada. She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family. Fight on, Patti. Fight. On. ❤
Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young
One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…
Melinda lives in Guyana in South America and was 35-years-old when she was diagnosed with Endometriosis. Now 40, she has started an Endometriosis Support Group in her country. May she bring the government, the women, and the medical professionals together to raise Endo awareness and improve healthcare for the Guyanese citizens!
Let me begin by thanking Lisa Drayton from Bloomin’ Uterus for giving me that little nudge I needed to start this Endo conversation in Guyana. My journey with Endometriosis has been a long and very painful one.
During the latter half of my teens I started having severe pains, heavy bleeding, bloating, lower back pain and constipation during my menstrual cycle. The pain was so intense I would sometimes faint.
Well, here I am, alive and doing well! Surgery was on September 21, 2016, and today is my 3-week surgiversary.
In a nutshell : my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions. Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it). AND it disappeared from my liver (doc couldn’t find any there this time). He was able to cut out all of my Endometriosis, except for a lesion that is on my diaphragm. He cut away all of my adhesions and put my organs back where they belong. I’ve still got both my ovaries and fallopian tubes. My uterus was stuck to my bowel, my ovaries and tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall. It just sounds like such a mess…But, he did confirm that my bladder’s exterior AND interior were completely healthy and Endo-free.
So, surgery took place on Wednesday, September 21, 2016. It’s main intent was to take a look inside to see if my Endometriosis had returned, to excise any lesions and free any adhesions. The official list of procedures to be possibly done that day, “Robotic Assisted Right and/or Left Ovarian Cystectomy, Excision of Endometriosis and Lysis of Adhesions, Possible Enterolysis, Urethrolysis, and Cystoscopy.”
The surgery took a little over two hours. I did not get to meet with my surgeon afterward, unfortunately, but did have the pleasure of speaking with him on the telephone before I left the hospital that day. What I remember:
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.