gnrh

Endometriosis & the Diaphragm

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Courtesy of Wikimedia

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, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

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Relugolix: An Up-and-Coming Treatment for Endometriosis Symptoms?

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a pill

You’ve more than likely heard of Elagolix, but have you heard of Relugolix? It’s a GnRH antagonist. And, yes, it’s the same classification of drug as Abbvie’s Elagolix (aka Orlissa). It’s being groomed to treat fibroids, prostate cancer, and (yep, you guessed it) Endometriosis pain.

Although not yet approved here in the United States, Japan approved Relugolix in January 2019 to treat uterine fibroids under the name Relumina. According to an Amsterdam company, TheSocialMedNework, Relumina is available for $1,400 for a box of 100 tablets (the standard dosage is one 40-mg tablet per day). I’m curious how that price rate would change in the United States if it were ever approved. It is expected that the FDA will receive an application for approval to treat uterine fibroids later this year.

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A beautiful breakdown of treatment options for Endometriosis

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A pile of open books
Photo by Amanda George from Pexels

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.

Resources:

Journal of Education, Health, and Sport (Article, 2019) – Available Treatment Methods for Endometriosis

Endometriosis & the Kidneys

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A doodle of a human kidney pointing at a diagram of the renal system

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.

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Lupron Depot: Q&A

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Text that reads "Q&A" with a blue lotus behind it

As many of you know, I was on Lupron Depot for six months for my Endometriosis.  I wrote about my personal experiences and also how my life had changed after my last injection (and have also shared other’s experiences).

Recently, a friend of mine learned he will be starting Lupron Depot to treat his prostate cancer.  My husband was surprised this morning when I told him.  He didn’t realize the drug’s original purpose was to treat cancer…in men!  And it’s because of the connection with cancer that many people think Lupron Depot is chemotherapy.  It isn’t.

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Reader’s Choice: Pudendal Nerve Pain

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A diagram of the pudendal nerve in a female human

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!

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Endometriosis & the Appendix

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Diagram of the appendix

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.

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An alternative to Lupron Depot, Letrozole, or Danazol?

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Syringe for Lupron Depot injection

The Journal of Restorative Medicine has published an article by Dr. Edward Lichen in their December 2016 compilation about non-surgical treatment of Endometriosis.  You can read the article, in it’s entirety, by clicking on the link under “Resources,” but I wanted to give a brief overview of my interpretation:

Causation:

  • Causation continues to be a mystery.  An overview of the nine theories of causation is given.
  • DNA research is ongoing.
  • Estrogen plays a role.  Many women with Endometriosis cannot opt for estrogen replacement therapy (even if post-menopausal) due to high recurrence rates of estrogen stimulation.
  • Xenoestrogens, dioxins, and endocrine disruptors increase inflammation and can cause Endometriosis to develop/recur.
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Reader’s Choice : Endometrial Polyps

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Tiny mushrooms growing on a log

One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about.  So what happens when I know nothing? I research!

What is a polyp?

A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above).  They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal.  There can be just one polyp…or there can be lots.

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