Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!
I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.
Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!
On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.
Today I’d like to talk about something that a lot of my EndoSisters suffer from: Interstitial Cystitis, also known as IC.
Interstitial what? That’s what I thought the first time I heard of it a few years ago. Heck, my doctor even suspected I had it (we check every time I go in for surgery, and so far: no tell-tale signs). I’ve been telling myself for a few years now that I needed to research and write about it…so today I am!
What is it?
Let’s start off with: it’s been around for quite a while. The first written description of IC was back in 1836 by Philadelphia surgeon, Joseph Parrish.
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.
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:
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: