Melissa is from New Zealand and was 19 years old when she was diagnosed with Endometriosis. She shares her story with us today. As well as tips that have helped her cope and overcome.
Melissa’s Journey: It all began with a dreadful case of a bladder infection. I remember the pain like it was yesterday. Intense swelling and no amount of going to the toilet alleviated the pain.
Worst part about it was that I was on holiday and there was no way I could get treatment without the long drive home. I had never experienced such intense pain while driving over a road bump in my life. I knew something else was going on.
On October 21, 2020, I went in for my tag-team surgery with my fellas: Dr. Mel Kurtulus and Dr. Matthew Schultzel. Each had their own specific tasks while they worked together to make sure I was happy, healthy, and well:
Dr. Mel Kurtulus was going to peek around inside to see if I had any new Endometriosis growths since May or any scarring or other things that may need to be cleaned up.
If this sounds familiar, we did a similar tag-team effort with these two amazing surgeons back in November of 2018, but for the opposite side of my colon.
The best part? I have had ZERO, zilch, nada, no pre-op pains! The only pain I’ve had since October 21st has been healing from surgery! My November pain journal screamed of the difference in my symptoms and Endometriosis pain!
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.
Our Endometriosis Family Support Group meeting will be on Wednesday, September 20, 2017, at 7 p.m. Our scheduled speaker for this month is Devra Densmore, Associate Director of Advocacy Relations at Continuum Clinical. If you have ever wondered about joining a clinical research study, this will be a wonderful opportunity to learn!
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!
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.
Patricia was only 16 years old when she was diagnosed with Endometriosis. Now 42, she lives in Montreal, and tells her tale now. It includes a progressively worsening diagnosis, a full hysterectomy, ongoing medical treatment, and 32 surgeries! Despite her medical efforts and treatment, she continues to suffer with the illness.
Patricia’s Journey: I was diagnosed with endometriosis at the age of 16. It wasn’t too bad at that point, but between the age of 16 to 21 it went to stage 4. So it was decided at the age of 21 to have a full hysterectomy, thinking it would be a cure. I also had tried all the medications that were available at the time to treat it. Nothing worked not even the full hysterectomy.
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.