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.
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!
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.
If you’re in the Southern California area and need a colonscopy, may I recommend The Endoscopy Center in Encinitas with Dr. Seeger? Everyone there was incredible and super friendly! What I was afraid would be a painful experience wasn’t painful at all. And it was sooo easy. Truly the hardest thing is drinkin’ the bowel prep and enduring a few hours on the toilet.
Why did I need a colonoscopy at 40 years old? My colo-rectal surgeon sprung it on me: one is needed a year after a bowel resection; just to make sure everything is okay inside.
Okay, on with the findings: a small polyp was discovered inside my sigmoid colon and removed for biopsy. The rest of my guts looked great! Wanna see?
In the past, I’ve researched how Endometriosis can affect the renal system, specifically the bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.
Today, I’m going to talk about Endometriosis and the actual kidney.
A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine. Imaging studies found a mass on her left kidney. A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion. It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.
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.
New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years. Today, a year later, she shares her long and difficult Journey with us.
Sarah’s Journey: I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.
It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.
One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research!
What is a polyp?
A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal. There can be just one polyp…or there can be lots.
D.M. was 37-years-old when she was diagnosed with Endometriosis. Nearly three decades later, she tells us her story.
D.M.’s Journey: Ovarian cysts removed on both ovaries in my mid twenties. By 37 I had Exploratory surgery to discover why I was infertile, and they discovered endometriosis and the ovaries had adhered to the bowel. The surgeon cleared out the area and wrapped the ovaries this time. Since then I have had colonoscopies and polyps removed. This last time, I’m 64 now, they biopsies the polyps and discovered endometriosis tissue inside the bowel.
I want to send a special Thank You out to D.M. for being brave enough to share her personal story with us today. You are a beautiful, brave, and strong woman. Thank you!!! We are sorry they’ve found it within your bowel, but hope that you are no longer in pain or suffering from your symptoms.
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.