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.
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.
Mollie was diagnosed with Endometriosis when she was 20. Now a year later, she shares her journey with us.
Mollie’s Journey: It all seems full circle to me after about 7 years.
At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.
Aly was diagnosed when she was 15 years old. Now 21, she shares her Journey with us, and she has been through so much. She does, however, continue to fight and push ahead and raise awareness. She’s an incredible woman. And one hell of a Warrior.
Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.
One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” So, here I go off to learn things and hopefully share a bit of that newfound knowledge. And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).
Where’s the Pudendal Nerve?
The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. There’s two: a right and a left pudendal nerve. One or both pudendal nerves may cause issues, which we’ll get into right now!
A bird’s eye view of the pelvic floor muscles
Have you heard of pelvic floor dysfunction? I hadn’t; not before meeting women who suffer from it. And I’d never heard of a pelvic floor before that, either. We’re going to focus today on pelvic floor dysfunction in women (although men can get it). But what is it?
The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function. Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side. Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina. When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction. It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.
We made it through another week!
Today’s quote comes from Lara, a fellow blogger. She suffers from Endometriosis, Adenomyosis, Pelvic Floor Dysfunction, and Interstitial Cystitis. And I fell in love with her writing…With permission, she allows me to share it with you today. Even if you don’t suffer with the pain and issues of these conditions, her words are powerful to every struggle:
“But I won’t give up. Not today. Not tomorrow. I’ll always fight my hardest to embrace my normal. To not let it anger me, but to let it empower me. Because what other choice do I have? Nada.”
And have a wonderful weekend.
Kelly was 15 years old when she was diagnosed with Endometriosis. Nearly a decade later, she shares her journey with us.
Kelly’s Journey: Hi! My name is Kelly; I was diagnosed with endometriosis while I was in high school at the age of 15. I had problems with my period but was too scared to tell my mom because I didn’t want to go to the gynecologist. Needless to say, she eventually found out and I was forced to go. My period would last a month at a time, then a week free, then it would be back. While this was happening, I was losing tons of blood so I would see my primary doctor to be put on iron pills because they didn’t know how or why I was losing so much blood. Like I said my mom found out and I was put on birth control which regulated my period.
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.