EndoWarriors: Research Company is Looking for Your Feedback

Video conference image with six different men and women
Image by mohamed Hassan from Pixabay

A clinical research company, LaGrippe Research, is looking for participants in the USA to offer feedback regarding prescription medication and Endometriosis. If you’ve been prescribed and taken any medication to manage your symptoms and are interested in providing either positive or negative feedback, please follow the instructions below.

My understanding is it will be in the form of a 60-minute web assisted interview to discuss topics related to treatment and overall management of this condition. Those who qualify and participate will be compensated $150 as a thank you. These discussions will take place October 8th – 13th. I do not have information on their client or what pharmaceutical company may be funding this. But, you know me: I will always share opportunities for you, my dear readers and fellow EndoWarriors.

If you are interested, please fill out the preliminary questions online here:  https://www.surveymonkey.com/r/N7XJQL5

If you have any questions, please contact Maggie at (847)-373-4104 or email maggie@lagripperesearch.com  

And, as always, full disclosure: for every person that qualifies and participates, LaGrippe will compensate me a small referral fee, which I have directed them to instead donate to the Endometriosis Foundation of America. A fun way to spread the word AND help fund my favorite Endometriosis organization.

Endometriosis & the Diaphragm

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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The “Band-Aid Treatment Plan” Strikes Again

Bandaids crossing into an X

If you’ve followed my blog for a while, you may have already seen the entry about c-section scars developing lumps of Endometriosis. If you haven’t already read it, you can follow the link or just know there are a lot of women that develop a painful mass in or around their c-section scar that turns out to be Endometriosis. It’s not just limited to c-section scars, but those are mostly the reported instances of scar Endo. Most of the time, that lump is removed and the symptoms fade; recurrence seems rare.

An article hit my inbox this week that had me breathing heavy. I had to take a few days to calm down before I wrote today’s entry.

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New Clinical Trial for Endometriosis: Edelweiss

Doctor standing next to man

Most of you know how I feel about clinical trials, but my own personal thought aside: another one has hit my inbox and is currently recruiting. I wanted to share it with you in case YOU wanted to look into it deeper and apply.

The Edelweiss Study is for Endometriosis.  From what I can research, it appears to be medicine-based and may be a pill-form.  If you’re totally cool with participating in a drug-based clinical trial, give it a go. I will never judge or try to talk you out of it. ❤

There are locations conducting the study in both Los Angeles and San Diego, as well as other locations around the United States.  For more information and to enroll in the study, please visit the Edelweiss site for more information.

IF KNOWING MORE ABOUT THE DRUG AND THE HISTORY OF TESTS MAY PRECLUDE YOU FROM THE STUDY, please don’t read this last paragraph:

From what I can gather from clinicaltrials.gov, the Phase2 of the OBE2109/Edelweiss study started in 2016 and ended in July of 2019 for women with Endometriosis pain. No results were posted.   Studies are currently going on with the same drug regarding fibroids (with and without the Add-Back pill).  And a safety study was conducted of a drug named “Linzagolix” (aka OBE2109) on women with impaired liver function.  No results were posted. Linzagolix is made by Obseva and is a GnRH receptor antagonist.  According to Obseva’s webpage, Clinical Trials Phase 3 are looking to enroll 900 women. A quick google search of Linzagolix & Edelweiss confirms it’s one and the same.   I’m no medical doctor, but I know that Orilissa (AbbVie’s pill similar to Lupron Depot) is a GnRH antagonist.  I am assuming the risks and side effects may be similar. Please do your research, make an informed decision, and never be afraid to opt out of a study once you’ve already enrolled.

Resources:

ClinicalTrials.gov

Edelweiss Study

Obseva

~ 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

Inguinal Hernia & Endometriosis

Inguinal canal in female courtesy of https://www.slideshare.net/vernonpashi/surgical-anatomy-of-the-inguinal-canal

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.

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A beautiful breakdown of treatment options for Endometriosis

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

New Study: Elagolix vs. Lupron (Cost Effectiveness & Quality of Life)

Red apple and green apple
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…

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New Clinical Trial for Endometriosis Pain

Icon of doctor and patient for clinical trial

An EndoSister shared a page with me describing a new clinical trial for women suffering with Endometriosis pain. It’s a vaginal ring that delivers *some type* of medication. There wasn’t much information on the site about what type of medication…

If you’re interested in seeing if you qualify for the clinical trial, you can submit your application by answering a few questions on ResearchMyEndo’s site. Once you’re talking to a representative, be sure to ask questions like what type of medication is it (pain medication? GnRH agonist? GnRH antagonist? potential side effects? options to leave the study, etc.) AND (most importantly), you may not want to read any further of this blog entry because I don’t want to reduce your chances of being accepted if researching the product is a disqualifying factor.

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Research OutSmarts Endometriosis Study is ongoing

ROSE-logo-FINAL1

The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help.  They received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!!  I’ve participated in the study and so can you. Yes, you!!  But you must be over the age of 18 and NOT pregnant or breastfeeding.   Don’t live in the New York area and feel like you can’t help in any way? That’s not true!  You can work via e-mail and express mail.

What’s the study all about?  Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”

What do you have to do?  You sign a consent and answer a few questionnaires.  Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional). When I first participated in the study in late 2014, they only used a diva cup for collecting menstrual blood (which, due to my double cervix, I couldn’t do). But now they’ve offered the use of a small sponge to collect menstrual fluid, too. SO I GET TO DO IT NOW! 😀

I’ve also kept in touch with my contact with the ROSE study and sent them the op reports, pathology reports, and photographs from my 2016 and two 2018 surgeries. If you’ve already participated in the ROSE study and have had subsequent surgeries, please feel free to keep them updated!

Also, the folks at ROSE still need the help of parents, siblings, or children of someone who suffers from Endometriosis.  This goes for men and women!  I know I’ve poked my brothers and mum to help with this one!  Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would).  I always hear, “I wish there was something I can do to help…” and now they can!

Don’t have Endometriosis?  YOU CAN STILL HELP!  The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis.  You’d go through the same process:  questionnaire, DNA sample, period sample (again…this last bit is totally up to you).

Reach out to someone on the ROSE team by contacting them:

Telephone: (516) 562-ENDO (3636)

Email: ROSE@northwell.edu

Webpage: https://www.feinsteininstitute.org/rose-research-outsmarts-endometriosis/how-get-involved/

A flyer for the ROSE Study can be read here if you’d like more information: ROSE Endo Flyer 2018_0522

*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*

Together we can help push for a better understanding of Endometriosis…and one day: a cure.