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.

Feel Good Fridays

Friday! The last Friday of September…already? Time just goes so quickly.

This week has been rough for me. My period started 15 days late. Ha. I was certain I was going to skip September. And the only pain I’ve had on my period has been intense lower left abdominal pain and mirrored back pain. Been living on NSAIDs, pain pills, TENS unit, and herbal pain spray this week.

I received word that they may be able to schedule my bowel resection for mid-October, but still waiting on confirmation. I would love it if it could be sooner rather than later, but we’ll see.

And now? Now we wait…

“As long as I fight, I am moved by hope; and if I fight with hope, then I can wait.”

― Paulo Freire, Pedagogy of the Oppressed

May we keep hoping and fighting ❤ Have a wonderful weekend.

Blogs I updated this week:

Endometriosis & the Appendix: a 2020 study of a 45-year-old woman whose imaging studies of her appendix appeared normal, but once in surgery was found to not only have deep-infiltrating Endometriosis on her appendix, but a carcinoma! The appendix was removed and two years after her surgery, she was still symptom-free

Orilissa: if you’ve been on Orilissa and want to share your experience, whether it be positive or negative, please follow the link to the blog entry and leave a comment! We’re hoping your experience can help others deciding to start treatment

Feel Good Fridays

Image by Alexas_Fotos from Pixabay

Happy Friday, Readers. How was your week? Let me know in the comments below. 🙂 Let’s get to know each other a little more, eh?

I’m in surgery-scheduling limbo right now; which is totally okay. I will be patient. I will wait. And I will take heart and build courage knowing it will be scheduled soon and on the books.

I’ve had a very painful week. I met with my colo-rectal surgeon to discuss surgery plans on Tuesday. He also performed a rectal exam because I was complaining of some additional pain. Just having finger and that butt-speculum (is there a technical term for it?) in there for an instant caused an intense flare of my lower left abdominal pain that lasted for a few days. I’ve popped NSAIDs and Tramadol all week. Today seems to be the first day since without *much* pain.

I know it can be hard to stay positive when all you’re doing is hurting. It can be frustrating, demeaning, and downright depressing.

But hold on tight. Talk to someone. And don’t let go.

“The only real battle in life is between hanging on and letting go.”
― Shannon L. Alder

You are definitely strong enough to hang on. And if you feel like you can’t, I’ll be right here to grab your hand and help. Just let me know.

Feel Good Fridays

This week has been a good one, full of appointments and phone calls!

I met with my Endometriosis surgeon on Tuesday morning has agreed to pursue the second bowel resection to remove the Endometriosis on my sigmoid colon. Then just 30 minutes later, I had a telemedicine appointment with my primary care provider who submitted the insurance authorization request for the referral to my colo-rectal surgeon.

That same afternoon, I scheduled my consultation appointment with my colo-rectal surgeon, even though we hadn’t received insurance approval; a step that may take one to two weeks.

I woke up Wednesday morning to an email from my medical group approving the colo-rectal surgey consult, surgery, and several post-op visits!

It’s in the works! So quickly! I currently am scheduled to see my colo-rectal surgeon on September 22nd, but have asked to be put on the cancellation list in case his calendar opens up sooner. We shall see! Then? Get that surgery on calendar to deal with my guts!

Fight. Push forward. Do what you need to do for YOU. Whatever it may be.

So today’s quote:

“Don’t just seek out help when you are suffering. Every day is a good day to learn, grow, and help yourself. Every day is a good day to invest in bettering the quality of your life.”

― Akiroq Brost

We can. We will. We’ve got this!

Feel Good Fridays

Candles Dark Light Black Fire Flame Fire

Welcome to the first Friday in September. I hope that you’re all doing well. And if you’re not doing well, I hope that you find something happy to cling onto to get you through today. If you need to talk to someone, I’m always around.

For anyone feeling alone, struggling, fighting…you are not alone.

This disease often makes us isolated. We may lose friends or loved ones because of our inablity to attend events, cancelling at the last minute, always “complaining” of our pain, etc. I’ve been there. I’ve lost people, too.

But do you what what? We’ll always have each other. Always.

“So what if the sun isn’t shining? Fearing the darkness won’t make it go away, the only way is to fight it with light, come, let’s all light our candles and stand together, the darkness will vanish…”

― Shahenshah Hafeez Khan

I’m serious: if you need someone, email me.

Blogs I Updated This Week:

Bladder & Endometriosis: Added Nov. 2020 (we jumped ahead to the future!) study released in the Urology Case Reports journal is of a woman who complained of painful urination, difficulty voiding, incontinence, and a frequency to urinate.

Cervical Endometriosis: Added a 2019 study of cervical endometriosis to our ongoing entry of Endo and the cervix. A 24-year-old woman had an abnormal pap smear, chronic pelvic pain, infertility, and painful periods. She had visible violet nodules on her cervix, and surgery confirmed a big ol’ lesion on her cervix…which was discovered only after they “unstuck” her rectum from her cervix in surgery. No other Endo in her pelvic cavity.

Endometriosis & the Appendix: Added a June 2020 study of a 45-year-old woman with Endo on her appendix and cecum to our ongoing blog about endo on the appendix. Have you been diagnosed with appendiceal endometriosis? What were your symptoms, if any? Suspect you have it? Make a note of your symptoms to talk to your doctor.

Endometriosis & the Lungs: added a study to our ever-growing Endometriosis & the Lungs blog entry. This one of a post-menopausal woman who suffered from a collapsed left lung due to Endometriosis lesions. Don’t even try to convince me Endo goes away for everyone after menopause.

Orilissa: Abbvies’ New Drug to Manage Endometriosis Symptoms: Updated our post about Elagolix by adding four Abbvie-funded studies ranging from August 2019-August 2020. They covered Endometriosis-related fatigue, initial dosing, Add-Back therapy, and bone density risks of fractures and osteoporosis. Have you tried Orilissa? What are your thoughts? Did it help? Hinder? Did you feel any side effects? I’d LOVE to add testimonials from EndoWarriors who have been on Orilissa to this blog. I can keep it anonymous if you wish; just shoot me an email or a comment below.

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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