If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.
We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsayand Tabitha, share their own stories about endo on their diaphragm.
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.
You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain. I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.
I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same. And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance). Orilissa is estimated to hit markets for prescriptions in August of this year.
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!
It’s that time, again! Time to pick a random country and analyze how they deal with Endometriosis. Today we’ve chosen Iceland (as of today, we’ve had 13 views from Iceland).
Iceland is a little bit smaller than Cuba (40,000 sq. miles) and sports roughly 329,000 people and has a 5% unemployment rate. I also learned that Iceland doesn’t charge for upper secondary education (think of this as a junior college with most attendees between 16-20 years old), nor does it charge tuition for university attendance! That’s just so awesome!
So, if you’re reading this you probably already know a little bit about Endometriosis. Recently at our support group meeting, the question of iron levels and anemia came up. With all that bleeding, can we suffer from anemia or an iron deficiency?
And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk: could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?
As you may know, Endometriosis is not limited to just your reproductive bits & pieces. It can implant, grow, and fester in many places; the bowel included. But what does that mean? How do you know if it’s on your bowel? Today’s blog will go into that…Read on, dear Reader…read on. Word of warning : I will be using words like fart and poop! Why dance around the subject with flowery words when I feel like I’m a giggly 12-year-old girl?
It is estimated that between 5-15% (and some even doctors guess it’s actually between 3-34%) of women with Endometriosis suffer from Endo on their bowels. Bowel Endometriosis may affect the colon, the rectum, the large intestine, the small intestine, the colon, or the sigmoid colon. The implants may be physically located on the bowels, or even just located adjacent to them in areas like the Pouch of Douglas, uterosacral ligaments, or rectovaginal septum. The close proximity of the inflamed and irritated lesions may be enough to induce bowel Endometriosis symptoms. And these symptoms may also be caused by adhesions pulling or twisting the bowels.
As you may recall, last week I shared how I have heard a lot of recent buzz about sexual abuse and Endometriosis sharing a causal link. As promised, I did some digging to figure this out for myself. Curious on my opinion? Read on! But, please remember : it’s only my opinion.
According to The National Center for Victims of Crime, 1 in 5 girls and 1 in 20 boys are a victim of child sexual abuse. In 2012 in the United States alone there were 62,939 reported cases of child sexual abuse. That same year, there were 346,830 reported rapes or sexual assaults of persons who were 12 or older.
There are many usual signs and symptoms of Endometriosis. If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.” What’s that? She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis. Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all. She suffers from the same invasive disease as the rest of us. Just in a different way.
A whole slew of questions were raised, which we’ll look into:
Why do some people present with classic symptoms like crippling pain and some don’t?
And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?