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

Sponsor Highlight: Estey & Bomberger, LLP

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Estey & Bomberger, LLP.

Leading trial attorneys in San Diego, the firm of Estey & Bomberger litigates personal injury and sexual abuse cases from all over the United States. They have been recognized for their efforts recently in the media for sexual assault cases involving rideshare drivers assaulting passengers, coaches assaulting athletes, teachers assaulting minor students, and members of the clergy assaulting parishioners. While their sexual abuse cases may be emotionally inflammatory and memorable, E&B also handles personal injury cases such as auto v auto, pedestrian v auto, bicyclist v auto, etc.

Not only are they incredible attorneys with great skill and compassion, but they’re the employers of Lisa Howard, the founder of Bloomin’ Uterus. Although this may sound biased, it’s not: they truly do care about their clients and achieving the best outcome possible for each case.

We’d like to extend a HUGE thank you to Steve Estey, Mike Bomberger, and the whole E&B crew for their continuing support of not only our Walk but Lisa’s own personal Endo Journey.

Sponsor Highlight: Dr. Rosebudz

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Dr. RoseBudz.

A local supplier of CBD products, Dr. RoseBudz offered a public workshop a few years ago about how CBD products may help those who suffer with Endometriosis. Her products have helped several of our BU EndoSisters. This year not only is Dr. RoseBudz a sponsor of our event, but she will have a booth available at the Walk. Do you have questions? Check her out. And peruse her wares on the day of the event. She’ll offer CBD salves, lotions, full spectrum tinctures, nano tinctures, and suppositories for sale.

We’d like to extend a HUGE thank you to Dr. RoseBudz for her support of not only our Walk, but to the community and to those fighting Endometriosis.

Sponsor Highlight: Special Flower Oil Co

Special Flower Oil Co logo

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Special Flower Oil Company.

You may remember I wrote about Special Flower Oil Company last year. Not only are Raul and Yuliya friends of mine, but they have created a small business to bring handmade, healthier products into our homes. And with a world of toxins, chemicals, parabens, and who knows what else out there may affect the growth of Endometriosis: I truly appreciate their products.

Not only will Special Flower Oil Company be sponsoring this year’s walk, but they’ll have a booth at the event! You can feel free to pick up some of their hanmade soaps, lotions, perfumes, and other wares!

AND? They’ll be donating a care package gift basket for our opportunity drawing!

Raul and Yuliya, thank you from the bottom of my heart. Not only for your support, but for the wonderful products you create. You’re a glowing beacon of generosity, friendship, and you genuinely care about helping others. ❤

Our walk will take place on March 28, 2020, in San Diego, California. It has traditionally been paid by out-of-pocket expenses, but has grown so large that donations and sponsorships are now a thing! I’m truly honored and super excited to be able to do this walk yet again.

If you would like more information to be able to attend our walk, registration is free (although we are asking for optional donations). Or if you, or someone you know, would be interested in either sponsoring the event or hosting a vendor booth, please contact me! These donations, vendor fees, and sponsorships go toward paying for the cost of the event. And are tax-deductible as a donation to Gifts 2 Help.

Sponsor Highlight: Erin Curlee

headshot of Erin Curlee

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor our first sponsor, Erin Curlee.

Erin made an anonymous donation, which earned her a sponsorship title! She’s been a friend of mine for many years and has been so very supportive of my Endo journey, and the journeys of my EndoSisters. Although she doesn’t reside in San Diego, her presence is well-known in our group and her support is endless.

She’s been truly amazing. And her heartfelt donation took me by surprise and made me hug her all the harder.

Our walk will take place on March 28, 2020, in San Diego, California. It has traditionally been paid by out-of-pocket expenses, but has grown so large that donations and sponsorships are now a thing! I’m truly honored and super excited to be able to do this walk yet again.

If you would like more information to be able to attend our walk, registration is free (although we are asking for optional donations). Or if you, or someone you know, would be interested in either sponsoring the event or hosting a vendor booth, please contact me! These donations, vendor fees, and sponsorships go toward paying for the cost of the event. And are tax-deductible as a donation to Gifts 2 Help.

Pain Journal: November 2019

Summary of my November 2019 pain

November was gone in the blink of an eye, but while it WAS November, it felt slow! And this was my most painful month since last year’s excision and bowel resection.

I still get mild staple discomfort if I eat too much. And my bowels still react if I have too much cheese or alcohol.

On November 2nd, I started feeling some pain in my lower right abdomen area, but I figure that was bowel-related since I had some diarrhea that day. November 4th, however, brought pain to my lower left abdomen and the same mirrored location on my left lower back. Not pain at my uterus! That pain started as a 3 out of 10, but escalated to a 6 out of 10 as the day progressed. Heat didn’t help. I wasn’t allowed to take any Naproxen or other NSAIDs (Aleve, Advil, etc.) because of a colonoscopy I had scheduled for November 8th.

Why all the pain? November 5th: I started my period. Great. And the pain progressed. It now hurt when I went pee, the pain never ended the night before and interrupted my sleep, and the pain levels of that same spot in my lower left abs and lower left back spiked to a 8-9 out of 10. So, I popped Tylenol when I could, I used herbal pain spray, my Livia unit, my heating pad, and even hopped in the shower. Nothing really worked, but the pain fluctuated between a 6-9 throughout the day. A day that I took off work to be miserable at home. I had to drive to a pre-planned appointment with my excision surgeon to discuss some ultrasound results. My pain during that visit was an 8-9 out of 10 and I couldn’t help but do the usual bend-myself-in-half trying to choke out the pain and I cried in the lobby like a boob. He gave me a referral to a pain management doctor (which I’m still trying to set up the appointment), and we had “The Talk” about another excision surgery and hopefully a hysterectomy. I will see Dr. Kurtulus again in February to give my body a few months to see what happens with my pain and the pain management referral.

On the 6th, I woke up NO pain! I was so excited, but it all flooded back (once more only on the lower left side of my abdomen) by 8am when I drove to work. It fluctuated between a 0-7 out of 10 throughout the day and I took Tylenol when the pain was too intense.

The next day, driving once more to work brought my pain from a 0 to a 6 out of 10, once more only on that lower left side of my pelvis and back. But I didn’t take any Tylenol because of the colonoscopy scheduled for the following morning.

On the 8th and 9th, I had some residual pain on that lower left abdomen, but that was it. I didn’t have any further pain until I started my period…again…on November 29th.

An interesting note, sex hasn’t been painful (we avoid doggy style, though) all year. But on November 27th, we couldn’t do it because I was in severe discomfort with insertion, even well-lubed and aroused. I suspected my period was looming. Two days later: she hit.

November 29th: I woke up with uterine cramps (yay, not in the lower left like last time!). The cramping was about a 4-6 out of 10, but I had been dreaming of period cramps. A hot shower didn’t help. I took a few Naproxen that day (the pain fluctuated up to an 8) and helped reduce my pain.

November 30th’s cramps were between a 0-7, and again I had to take Naproxen a few times.

Day 3 of my period (December 1st) brought small cramps throughout the day (0-6/10), but they were quick pulses that came and went, rather than a constant pain. I’m now on Day 4 and have had even less cramps.

I’m glad that my pain appears to only be when I’m on my period, but am extremely disheartened to I think my Endometriosis is back. Especially with how intense my early-November period was. But am pleased to wait for the pain management doctor and February’s consult. If you’d like to watch my daily food, beverage, poo & pain tracker, here it is:

The good news? It still doesn’t hurt when I poo. 😀 Although the bowel prep was lengthy and violent: I poo’d 32 times on November 7th after I drank the prep, and another 43 times on the morning of the 8th before my procedure! But…NONE OF THAT HURT.

Speaking of poo, here’s my poo-chart! Would you look at that “Diarrhea” chart during my bowel prep?!!?? OHMYGOD, may it never be that high again!

December is here. I’m already on my period. And, if my counting is correct, I’ll be on it again for Christmas…we’ll wait and see how that one does!

Today is my one-year resectionversary!

One year ago today, I had my bowel resection surgery to remove to visible lesions of Endometriosis off of my small intestine. A section of my right intestine, as well as appendix and cecum were also removed. All biopsies came back as Endometriosis, including microscopic Endo on my appendix, and cecum.

I documented my healing process with photos! If you follow my personal page on Facebook, you already knew that. BUT I made a one-year anniversary video of my healing process!

How has my quality of life been since my surgery? Once my body recovered from the trauma of the surgery, it’s been pretty awesome. I mean, I’ve had to make some adjustments to diet, monitor my alcohol intake, stumble along the way.

BUT…I haven’t endured a single painful poop since my surgery! In the past, it’s felt like I poo’d glass and razor blades and barbed wire. The guts felt like they were packed with the sharp objects and just cutting along the interior as I poo’d.

That is long gone. Good riddance. Never come back.

I cannot say it enough: Thank you Dr. Schultzel and Dr. Kurtulus for your expertise, professionalism, and genuine desire to help your patience!

And my words of advice to you? Always track your symptoms. Write them down. Voice them to your doctor. Bring in copies of your pain journal. Find a doctor knowledgeable in Endometriosis and excision. Pursue answers and proper treatment!

Here’s to hoping the rest of my body stays Endo-free, too…

Feel Good Fridays

Happy Friday, my lovelies!

May you find inspiration to keep going, and may today’s quote help you get there!

“Being strong doesn’t mean that you never break! Being strong means that even if you break into a million pieces, you still have the courage to pick those pieces up, put them back together, and keep going on.”

― Manprit Kaur

We can keep going. And we will. Together.

Love, Lisa

Blogs I updated this week

Endometriosis & the eyes: added an August 2019 study of a 41-year-old woman with Endometriosis on the outside of her eyelid!

My First Colonoscopy

If you’re in the Southern California area and need a colonscopy, may I recommend The Endoscopy Center in Encinitas with Dr. Seeger? Everyone there was incredible and super friendly! What I was afraid would be a painful experience wasn’t painful at all. And it was sooo easy. Truly the hardest thing is drinkin’ the bowel prep and enduring a few hours on the toilet.

Why did I need a colonoscopy at 40 years old? My colo-rectal surgeon sprung it on me: one is needed a year after a bowel resection; just to make sure everything is okay inside.

Okay, on with the findings: a small polyp was discovered inside my sigmoid colon and removed for biopsy. The rest of my guts looked great! Wanna see?

Colonoscopy photos of my guts

My favorite thing I learned from your colonoscopy? I still have my ileocecal valve! I thought that bad boy was removed during my bowel resection. Seems like I still have it, according to the photos! I’ll ask my colo-rectal surgeon when I see him. Yay! And I like that they could see, and photograph, the section where my guts were stapled together!

Drinkin’ my Suprep

Thursday night’s bowel prep was…a lot. I thought I poo’d a lot for my November 2018 bowel resection? Oh my god…I poo’d 32 times. Thirty-two!

And more Suprep Friday morning

And Friday morning’s prep? I crapped 41 times! Including 20 minutes before the camera went up my bum! Apparently my rectum is competitive and had to beat the record from the night before. One day I’ll log the times, etc., but not today.

The plan? Wait for the biopsy results, discuss with my physician, and have another colonoscopy in five years!

A huge thanks to The Endoscopy Center crew for making my first colonoscopy wonderful: the receptionist, Tanya, the nurses (Elaine, Allison, and Lia), and Dr. Seeger. I wasn’t gassy or sore or bloated or anything I feared afterward. It was truly a pleasant experience (well, except for the prep ha!).

PS – if you’re ever afraid that you’ve still got some liquid-poo inside your guts and you’re going to just poo all over the staff during your colonoscopy, rest assured: they’ve got suction at the end of that li’l camera! It was my one big fear; and they alleviated it by explaining the suction! YAY!