In the “Resources Section” of each of these blog entries are links to medical literature that you can review, print out, and give to your healthcare providers!
In January of 2021, the Journal of Medical Primatology published an article about a hooded capuchin (a primate) that developed Endometriosis. They were able to “successfully” treat it with surgery and medical management.
This is only one case of a growing list of cases of spontaneous Endometriosis developing in non-humans: including several other primates and a dog. Animals with Endo break my heart: they cannot fully express any pain they may be in, or offer opinion or consent for medical procedures…and it just makes me want to weep.
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.
Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!
What is AN inguinal hernia?
An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.
A new study about Endometriosis is out regarding the modern treatment of the disease. This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.
The study closes with this beautiful phrase:
“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”
It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed. AND that each case of Endometriosis must be reviewed on an individual level.
“Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.
Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).
Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.
I encourage you to read the study for yourself and share it.
Comparing apples to…apples? Image by Freestocks.org
This will be a highly-charged opinion piece for me…so as you read what I am writing, please know that I am seething and upset and just needed to vent.
A study of Elagolix (aka Orilissa) hit my inbox recently and I just opened it today. It was run by Abbvie, of course. And it compares Elagolix to Lupron to see which is more cost-effective in possibly giving women with Endo a greater quality of life. So, it’s win-win for Abbvie since they make both of those drugs…
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
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.
Last year I wrote about a study involving Endometriosis being found in Cynomolgus monkeys. Recently, a new study was published in Human Reproduction about those monkeys and Endometriosis, and here I am to regurgitate it to you in my layman understanding.
At the Tsukuba Primate Research Center in Japan, 614 female cynomolgus monkeys were evaluated between 2008 and 2012. Of those, 29 were chosen to be screened on a routine basis, including monitoring menstrual cycles, fertility, bloodwork (including CA-125 levels), and physical examinations. Surgeries were performed and 15 of the 29 monkeys had surgically confirmed cases of Endometriosis.
Let me repeat that: fifteen of the 29 monkeys had surgically confirmed cases of Endometriosis. These monkeys were not implanted with Endometriosis as lab rats often are. It grew on its own.
These 15 monkeys ranged in age from 8 years old to 20 years old. They discovered that CA-125 levels tended to be elevated in the monkeys that had chocolate cysts present and lower in those who did not have endometriomas. They also discovered that painful palpation examinations and abnormal feces were both commonalities with these monkeys. Also of note, the monkeys ate less food during their menstrual cycles, which may be attributed to increased pain and a decreased quality of life.
During the time of the study, the remaining monkeys who did not have Endometriosis were monitored to make sure they did not develop the illness. Four of them DID develop Endometriosis!
Even though the monkeys were small in comparison to humans, the surgeons were able to easily identify Endometriosis lesions (and their various colors: red, pink, brown, blue, black or white), endometriomas (chocolate cysts), and adhesions while performing the laparoscopies.
Based on these findings, the authors suggest that screening, diagnosing, and monitoring Endometriosis in monkeys should include palpations, fecal monitoring, and CA-125 testing.
The findings of the study were that cynomolgus monkeys with spontaneous endometriosis may prove to be a good model to evaluate the disease, as well as drug efficacy. I would hate to think that that means they may one day end up as lab rats for drug companies. My animal-lovin’ brain takes me down that dark path, though.
I am constantly amazed by the presence of Endometriosis in non-humans. And saddened at the thought that these animals cannot vocalize the pain I know they feel. But knowing that the illness affects other species makes me hope that it may one day get the attention of the scientific and medical communities that it deserves.
RESOURCES:
Human Reproduction – (April 2018) – Spontaneous Endometriosis in Cynomolgus Monkeys as a Clinically Relevant Experiment Model (entire article)
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
A recent study published in New Scientist magazine discovered that mice with Endometriosis proved to be more anxious and depressed than mice that did not have Endometriosis. Behavioural changes in the mice with Endometriosis led to this conclusion. It is believed by the authors that Endometriosis actually reprograms the brain, but it’s unknown as to how these changes occur.
Others believe that the anxiety and depression women with Endometriosis experience may be tied to their pain and infertility issues. They believe that the way the body perceives pain has been altered, which affects anxiety and depression.
The authors hope that their findings now instigate more research as to how Endometriosis affects the central nervous system; not just reproductive health.
I myself will be doing more research into this topic, too! Expect more ahead!
Resources:
New Scientist (November 2017) – Endometriosis Affects the Brain
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Bloomin' Uterus 