Feel Good Fridays!

A card of stones that reads "Resilience"

Good morning. Well, I hope you’re having a good morning. Today’s Feel Good Friday will require some explanation.

Resilience can be found
in mind
in body
in spirit;

Getting back up
pushing forward
trying again
and again;

Sometimes
every part of our being is required
on other occasions
one deep breath
is all you need
to bounce back;

A rebuilt the shelter
is stronger than the first
for it has the advantage
of experience.

~Jayme Allen; Mood Body Studio; creator of The Moody Deck

This past Tuesday I had an incredibly painful Endo day on Day Two of my period. I had to stay home from work, pop pain pills, take several hot showers, and nurse my heating pad all day. It was the first of such a day since October of 2018. The pain was intense. And it had me spiraling hard with my thoughts. Luckily, though, it was only one day and now just feels like Tuesday was a bad nightmare; no traces of its physical presence. Although the mental fears still linger.

And just yesterday I received The Moody Deck in the mail. Consider it a deck of uplifting, encouraging, and self-awareness cards. I drew a card yesterday for a meditation exercise: Resilience. Its explanation is above.

And this morning? I drew another card for the Theme of the Day. Having shuffled the deck about five times before I pulled out a card: Resilience.

Well hello, Universe. You’re right: I can get through this.

Whatever you may be going through, we can all get through this. We are strong enough. And when we don’t feel strong enough, reach out for help. You have many around you who will gladly support and hold you up. And if you feel that you don’t even have that…remember: you have me. Contact me anytime if you need it.

Visit Mood Body Studio for more information about The Moody Deck, including how you can purchase your very own deck for $40.

Feel Good Fridays

Folding chair atop a quiet lake in the mountains
“Enjoy the Silence” by Thomas Leuthard

Good morning, guys! And happy Friday!

I know we all have our bad moments, days, weeks, months, or even years. Life can be ruthless, unfair, and tough. Whatever you may be going through, I want you to take a moment and really let today’s quote soak in:

“Do something nice for yourself today. Find some quiet, sit in stillness, breathe. Put your problems on pause. You deserve a break.” 
― Akiroq Brost

Did you read it? Take a deep breath, clear your thoughts, and read it again.

Really let it sink in.

Then give it a moment and identify something you’ll do for yourself today. It could be anything. Tell me about it in the comments. Then come back later and reply to your comment: were you able to do it?

We all deserve a moment to ourselves.

Even if it’s just to get away for five minutes and take a walk around the block.

May you have a weekend filled with a few relaxing moments. Enjoy.

Love, Lisa

Blogs I updated this week:

Dungeon & Dragons & Donuts: How RPG Games May Help with (Fill In The Blank): added Chapter 26 from our April 2019 session. Our adventurers have landed in the Anauroch desert in search of the City of Shade and Zeke, the man with the jars of souls. While in town, they meet a mysterious woman also searching for Zeke. Deals are struck and the adventure continues! Let’s deal with a little bit of heat and sand in places where it doesn’t belong!

Got Decals?

EndoWarrior and EndoSupport yellow ribbon car decals
Good Little Fly’s Endo Warrior and Endo Support yellow ribbon decals

I want to take a moment to introduce you to a good friend of mine, Brandy.

Brandy Sebastian is an incredible photographer, the mother of two furbabies, a devoted wife, the daughter of an incredible Mum, AND she’s a fellow EndoWarrior.

But not just any EndoWarrior; one with a mission to raise awareness of this disease on a multi-media platform!

Without giving away too many details on her Secret Squirrel project, I can tell you that she interviewed me for several hours last year. Then she followed me around during my July 2019 surgery from check-in to being wheeled away in my gurney, and again during my recovery at home. And she arranged an incredible photoshoot with me to raise awareness about the disease.

And if that’s not enough, she’s done it for SEVERAL of our local SoCal EndoWarriors. All in the name of Good Little Fly, all out of the goodness of her heart…and forking all of the expenses out of her own pocket.

Behind the Scenes: Brandy Sebastian shooting "Endo Fog" of an anonymous EndoWarrior on location in Death Valley.  Photo taken by photographer's mum and incredible assistant, Penny Kachuck
Behind the Scenes: Brandy Sebastian shooting “Endo Fog” of an anonymous participant on location in Death Valley. Photo taken by photographer’s mum and incredible assistant, Penny Kachuck

And she still has several more interviews and photoshoots lined up. She needs our help!

In order to fund this ever-growing project, Brandy has created and is selling EndoWarrior and EndoSupport yellow ribbon decals. If you’d like one, they cost $5.00 each and Brandy is accepting Venmo payments to @Brandy-Sebastian. And you can follow Good Little Fly on Instagram or Facebook, too! And please feel free to contact her for other payment options if you don’t have Venmo.

Brandy and Sam manufacturing the yellow ribbon EndoWarrior and EndoSupoprt decals
Brandy Sebastian and Sam Jorgenson hard at work manufacturing the decals

Support a great cause! And announce to those driving around you just what you are. You’re strong. Endo strong.

Yellow ribbon EndoWarrior decal in front of an unsealed mailing envelope
The first sale ready to go to its new home!

And please feel free to follow Brandy and Good Little Fly on social media…and share the heck out of this. Even if you can’t afford a decal. ❤

Feel Good Fridays

August 2019 calendar with the 16th circled

And now August is officially half-way over. Already! Where is 2019 going?!? Well, happy Friday!

Years and years and years ago, I purchased a little book from Barnes & Noble. I no longer have a copy of it, but may need to purchase it again. It changed my life. Well, it changed my perspective on my life.

And I forgot alllllll about it, until I went scouring the internet for today’s quote:

“True happiness comes not when we get rid of all of our problems,but when we change our relationship to them, when we see our problems as a potential source of awakening, opportunities to practice, and to learn.”
― Richard Carlson, Don’t Sweat the Small Stuff … and it’s all small stuff: Simple Ways to Keep the Little Things from Taking Over Your Life

I think I’m gonna go hit a used bookstore online and pick up a copy right now. What other nuggets of perspective-changing wisdom have I forgotten? Have you read the book and do you have a favorite blurb? Share it in the comments below.

And, most importantly, have a wonderful weekend.

Love, Lisa

We’ve got a big announcement to make!

Breaking news announcement

It’s with great pleasure that I’d like to announce that Bloomin’ Uterus has partnered with the local San Diego-based non-profit, Gifts 2 Help, for 2020’s Endometriosis Awareness Walk.

Not only is Gifts 2 Help a local organization, but it’s run by a fellow EndoWarrior! Amy started Gifts 2 Help in honor of her mother who passed away in 2007 as a way to continue her legacy: helping those in need however she could.  Ongoing projects include an annual CHP Appreciation Day, EveryDay Heroes Appreciation Day, and Christmas Miracles.  There are many more projects that Amy would like to take on through Gifts 2 Help, and I was thrilled when she suggested helping with our annual walk.

Donations toward the costs of the walk (and expenses of any future events) will be tax-deductible!  All donations that Gifts 2 Help receives on behalf of Bloomin’ Uterus will go into a separate account, the funds to be exclusively used for our future walks, events, workshops, and projects!

Together, we’ve recently secured the City of San Diego permit for our March 28, 2020, Endometriosis Awareness Walk at NTC Park at Liberty Station!  So, it’s official!! Expect a registration page and details soon!  But please do mark the date on your calendars!

Thank you, Amy, for your passion to help others, even as you have your own battle to win.

Feel Good Fridays

Sandwich with pickle spear on a table with a potted succulent

Another week has blown by and I find myself mentally wiped from an emotional week.

Unable to find an inspiring quote on my own, I enlisted the help of a friend I’ve yet to meet: Holly. We “met” over Yelp reviews of our favorite sandwich company here in San Diego. My favorite is the Charlie’s Special and hers is the simple, tried and true Ham & Cheese sandwich. We message a few times a month and she’s wonderful and always makes me smile.

So, I asked if she had a favorite and she has given me this one to share with you you today:

“If you find yourself constantly trying to prove your worth to someone, you have already forgotten your value.” ~Unknown

Thank you, Holly.

This jettisoned me right back to a time in my life where I was wrapped up in an abusive relationship with a man who constantly accused me of cheating on him, always called me “whore” when he was angry, and went so far as choking me when we woke up one morning (on my birthday) because he dreamt I had an affair. And he only liked brand-name clothing, which I hated. But, to please him, I purchased myself (and him) brand name clothes. And went so far as to wear bras on the weekends because he hated my boobs bouncing for the world to see. I completely changed who I was, but convinced myself life was happier because I was with him. I wasn’t. And after about six months of dating, I left him simply because he called me whore one more time. And I slowly regained my confidence, self-worth, and sense of “me” again.

Whenever my cousin, Aaron, gives me a hug he whispers into my ear, “You be good to you.” Typing it doesn’t give it justice: his tone, inflection, and cadence give it so much more life and depth. But may we never forget it.

So, never change who you are for someone. Never feel like you must constantly prove yourself. Just be. And if YOU are not enough to please someone, move on. Never lose yourself.

Ever.

Love, Lisa

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

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.

And there’s an interesting race between Myovant Sciences and Abbvie. Elagolix (Orilissa) was approved last year to treat Endometriosis pain, but Abbvie will be seeking FDA approval for it to treat uterine fibroids as well. Myovant will be seeking FDA approval for Relagolix to treat uterine fibroids…and eventually Endometriosis pain. The race is on!

Common side effects include (I consider this list incomplete and will continue to search for information):

  • hot flashes
  • irregular uterine bleeding
  • heavy menstrual bleeding
  • headache
  • excessive sweating
  • genital bleeding
  • depression
  • liver function disorder

In 2016, it was reported (in the US Exchange & Securities Registration Statement) that out of 1,300 trial subjects, there were a total of 36 serious adverse events. Of those 36: “one event of abnormal liver function tests, one of cerebral infarction, and one of embolic stroke.” The investigator noted those three events may have been “possibly related to Relugolix.” Dr. Google tells me that cerebral infarction and embolic stroke have to do with a blockage of the blood supply to the brain.

Myovant Sciences is working on developing Relugolix in combination with estradiol and progestins to ease side effects and prevent bone loss. In the US Exchange & Securities Registration Statement by Myovant on July 8, 2016, they identify Relugolix as their “lead product candidate” and outline their prospective trial timetable. Myovant appears to be a small fish in the pharmaceutical sea with not a lot of products under their belt.

Clinical trials are ongoing around the world for its effectiveness against fibroids, endometriosis symptoms, and prostate cancer. The study for endometriosis is called Spirit. More information can be found on MySpiritStudy .

Following is a timeline of clinical trials of Relugolix pertaining to Endometriosis:

October 2011: Efficacy and Safety of TAK-385 (Relugolix) in the Treatment of Endometriosis. This study concluded in August of 2013, with 487 participants and tested the drug for 12 weeks or more in 10, 20, and 40mg doses, as well as had a placebo and Lupron Depot injections as comparison. It completed in August of 2013.

March 2012: A Long-term extension study of TAK-385 (Relugolix) in the Treatment of Endometriosis. This study had 397 participants and tested the drug for 12 weeks or more in 10, 20, and 40mg doses, as well as had a placebo and Lupron Depot injections as comparison. It completed in December 2013.

November 2017 and December 2017: Spirit 1 and Spirit 2: Efficacy and Safety Study of Relugolix in Women with Endometriosis-Associated Pain. Still actively recruiting, these study hope to conclude by June 2020. They seek to have at least 1,200 participants testing Relugolix for 24 weeks; some with the drug and added estradiol/progestins; and others with Relugolix and placebo.

May 2018: Spirit Extension: Efficacy and Safety Extension Study of Relugolix in Women with Endometriosis-Associated Pain. This study is ongoing (by invitation only) and expected to be complete in mid-2022. They are hoping to have at least 800 participants to evaluate 40mg Relugolix in combination with estradiol and norethindrone acetate for up to 28 weeks.

May 2019: Clinical Study to Evaluate Efficacy of TAK-385 40mg Compared with Leuprorelin in Patients with Endometriosis. Presently recruiting, this study wants to have 320 participants and compare Relugolix to Lupron Depot for 24 weeks. They hope to have this study completed by early 2021.

Studies have shown that women have reported less pelvic pain when taking 40mg of Relugolix compared to the placebo.

If you’ve participated in these studies, please respect the non-disclosure agreements I’m sure you had to sign and refrain from commenting on your experience. Although I am mightily curious! But, I absolutely respect the NDAs.

I look forward to more information becoming available on the clinical trial outcomes, and a more thorough identification of the adverse side effects. Will I use it? More than likely not just because of the nature of the beast that it is. Lupron was similar…and was not a pleasant journey for me. But will I dissuade you from trying it IF it ever hits our shelves. Never. I’ll simply ask you to do your research first.

Resources:

BiopharmadiveMyovant Reports a Phase 3 Success, but Wall Street Isn’t Cheered

Biopharmadive Myovant Set to Battle Abbvie After Second Phase 3 Success for Key Drug

Clinical Trials

Drugs (Abstract; April 2019) – Relugolix: First Global Approval

Endometriosis News Relugolix

Myovant SciencesRelugolix

Roivant Sciences (Article; May 2017) Myovant Sciences Announces Presentation of Positive Phase 2 Date for Relugolix in Women with Endometriosis-Associated Pain at the World Congress on Endometriosis

TheSocialMedNetworkRelumina

US Securities and Exchange Commission – Myovant Sciences, Ltd’s Registration Statement

Wikipedia Relugolix

~ 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

Feel Good Fridays

A woman handing out free hugs
One day I’d love to do this. “Free Hugs” by Matthew G.

Friday. What a rough week.

Last night I went to dinner with Brandy, one of my local EndoSisters and one hellava Warrior. It was wonderful.

And after a few hours of talking, catching up, dumping out our hearts, and encouraging one another, we left after several hugs.

So, today’s quote:

“Some moments can only be cured with a big squishy grandma hug.” 

― Dan Pearce, Single Dad Laughing

They say laughter is the best medicine, but it’s not. Not for me. Hugs truly are. Good, long, warm, 100% legit hugs. Maybe that’s why I love Burning Man so much: endless, amazing hugs from so many strangers. Unencumbered, uninhibited, pure loving hugs.

And the long talk last night really made me feel better about so many things, too.

What lifts your spirits in times of darkness? Drop a comment below.

Blogs I Updated This Week:

Endometriosis & the Appendix: added two studies from July 2019 of women who had various symptoms and discovered during after their surgeries that they had Endometriosis on their appendix.

What Does Endometriosis Pain Feel Like: I added more entries from EndoWarriors describing what Endometriosis feels like to them. Would you like to share yours? Go ahead! There’s an entry form on the blog entry.

Pain Journal: July 2019

July flew by, didn’t it? Which means it’s the first of August and it’s time to review and post my pain journal! How was July? Let’s find out.

There’s still a distinct discomfort at my staples if I eat too much or haven’t pooped in a day. Thanks bowel resection! Most days I poop at least twice a day; sometimes four to five times a day (not a single painful poop since early February!!) And what’s the Number One culprit in making sure I don’t poop? Having more than one alcoholic beverage in a day. Case in point:

The weekend of June 29th, my husband and I enjoyed some R&R at one of our favorite spots in San Diego County. And I sipped on four whiskey gingers throughout that Saturday. I didn’t poop that Sunday. At all…and the discomfort at the staples by Monday, July 1st, was a bit much. Before I administered an enema that morning, I weighed myself; and again after I completed my business. I lost three pounds while pooping!

And I had four beers on July 4th, you know, to celebrate! Did I poop at all the next day? Nope.

I really need to remember to have just one drink; no more than two if I’m enjoying it with friends.

And when I eat too much food? On July 10th, I ate a large dinner and went to bed with discomfort near my intestinal staples. The next morning (2:30am and 9:00am): I had diarrhea. I’ve gotten a lot better about understanding when enough is enough, but there’s totally room for improvement.

I only had a few moments of distinct actual pain in July. Once, I sneezed and had a hard, sharp pulling pain on the lower right of my abdomen. Scar tissue? Endometrioma? Who knows. It lasted a fraction of a second.

I wondered if I was going to skip yet another period as my projected start date (July 15th) came and went. But then on July 22nd, I had some lower abdominal cramps; not enough to even classify as pain. A few days later, I started my period! I had some cramping and lower back pain on the lower left of my abdomen that was deep enough for me to pop two Ibuprofen. Nearly 30 minutes later, it all disappeared! So, I silently thanked the skillful hands of my excision surgeon and went on with my day.

That same afternoon, I had my scheduled follow-up transvaginal ultrasound. I ended up taking one Naproxen that evening because the discomfort of the ultrasound wand bumping around my already-angry female bits enraged my uterus and my cramps swarmed in (at about a 4 out of 10). The pain ceased to exist for a few hours, but mild cramping came back before I went to bed. I didn’t take any more pills as it was just a 2 out of 10 on the pain scale. A few days later, on the 27th, I had a sharp cramp at that same lower-left abdominal location. But I didn’t need a pill.

And that was it for my pain. For the entire month of July! It’s uplifting, seeing as my July 25th ultrasound confirmed the presence of Endometriomas on both of my ovaries, my ovaries are both stuck to the sides of my uterus, and the suspicion of adenomyosis grows deeper.

A girlfriend of mine has sworn off meat and dairy for a month; I decided to join her and support her in this quest. It began on July 17th and I haven’t noticed a big difference, but then again: I haven’t been in a lot of pain this year. But, it’s been an interesting, difficult, and fun challenge!

If you’d like to review my journal of food, drink, pain, and poop, here’s the slideshow:

And if you’re intrigued enough to review my poop chart, here ya go:

Let August begin!