A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…
Melissa’s Journey: I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.
Holly was clinically diagnosed with Endometriosis when she was 15 years old,and received surgical confirmation two years later. Now 33 years old (and nine excision surgeries later), she shares her Endometriosis story with us today:
Holly’s Journey: Some would say I was lucky. I was 15 the first time I heard the word “endometriosis”. I had no idea what that meant for me or for my or exactly how unlucky I would be. I was a sophomore in high school and my mom had taken me to my pediatrician because I was missing time from school and complaining of pain and severe nausea surrounding my period. My pediatrician immediately said “That sounds like endometriosis.” and referred me to a gynecologist. I went to the gynecologist and he stated my symptoms were likely endometriosis and decided to put me on a birth control pill to try and help with my pain.
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.
An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis. This study found Endometriosis growing within a muscle: the psoas major muscle.
So we’ve previously read about a German Shepherd being diagnosed with Endometriosis. Today we’re going to talk about Mandrills (a form of primate that used to be considered a Baboon) who had been diagnosed with Endo. I’ve read a lot of previous studies where Endometriosis was purposely implanted into critters for study and dissection, but these primates weren’t for study.
There was a study from 2012 about a Mandrill that had died after showing signs of weakness and peritoneal bleeding. Upon autopsy they found her uterus was covered in blood clots and it was stuck to her ovaries and pelvic wall. The biopsy confirmed she had Endometriosis. This is considered the first confirmed case of Endo in a Mandrill.
I have heard from several EndoWarriors that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s). Today we delve a bit deeper into leg pain complaints and Endo. Have upper leg pain? Lower back pain? Tailbone pain? So do a lot of people…but so do a LOT of women with Endometriosis. A 2011 study surveyed 94 people with Endometriosis. Of them, 51% complained of leg pain. Cysts may also be contributing to leg and lower back pain. And although you may have some of these symptoms and think you have sciatic Endometriosis…please be aware that it is considered incredibly rare. And it may just be that your symptoms are a result of pelvic floor muscles being too tight (pelvic floor therapy may help) OR that adhesions and/or Endometriosis has pulled your anatomy out of whack. But, please, do read on:
When I was getting ready to get wheeled into the Operating Room back in 2014 for my cystectomy, my Doc tells me that if he gets in there and there’s extensive damage, he may need to perform an oophorectomy (pronounced oh-uh-fuh–rek-tuh-mee). I signed the permission slip/waiver without blinking and off we went. Luckily, he didn’t have to perform one. And this turned out to be my Endo diagnostic surgery. Quite the day.
One of our readers & fellow blogger, SnowDroplets, asked the other day if I could look into the pros & cons of oophorectomies, when to have them, and hormone replacement therapy after the ovary(ies) is removed (especially how it may affect with with Endo). You know how I love to learn about new things, so here goes! And thank you, SnowDroplets, for asking this question. I learned A LOT today.
Hailey lives in Okalahoma. When she was 22 years old, she received her Endometriosis diagnosis. Now, over a decade later, she offers some stellar words of advice!!
Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.