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.
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!
What an incredible Journey leading up to my fifth surgery! Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.
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.
On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health). As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.
Before I go on, I just want to take a moment to express my joy in the above-photograph. I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man. Thank you, Brandy, for capturing this. And thank you, Dr. Kurtulus, for being so marvelous!
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!
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.
So, Wednesday is the big day. I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed. Figured I’d share it in case you didn’t know.
Endometriosis lesions (also called implants) grow wherever they damn well please inside the body. My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow. However, much like an iceberg, more than just the visible tip exists beneath the surface. Some people liken it to an invasive cancer, although not fatal.