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.
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
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.
CS was diagnosed with Endometriosis when she was 34. Now a year later, she shares the story of her diagnosis with us.
CS’s Journey: I didn’t think I could have endometriosis because I didn’t have bad menstrual cramps or heavy bleeding. What I did have, were bouts of pretty severe-left-sided pelvic pain. I first started noticing it a few months after I had my child, and I don’t think I have to tell you that I was repeatedly misdiagnosed.
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.
You’ve likely heard that Endometriosis can grow in all sorts of places inside the body. Well, the bladder and urinary tract are no exception. Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.
Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee. Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…). This urine-blood may not be perceptible to the naked eye and require a lab test. And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.
Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THEquestion…), “Are there any reports of men having Endometriosis?” I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses. So, we have our topic for today!!
In rare cases, cis-men develop Endometriosis. Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment. Here’s what I could find:
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…