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!

The Band Ligation Procedure

Rubber band ball

If you read my post from a few weeks ago, you already know that I have three hemorrhoids inside my butt. Yep. Three. What can I say? I’m an overachiever.

Why am I writing about hemorrhoids on my Endometriosis blog? Well, that’s because any one of you (yes, even you), can get them. Especially if you’re having to fight constipation, diarrhea, or both. And what do a lot of us with Endo have? Pooper-problems: yep. Constipation and diarrhea.

Today was the big day to remove the first of the three: the band ligation. Was I nervous? Of course. I didn’t truly know what to expect other than a tiny rubber band would be going around my lumpy li’l hemorrhoid. I already verified with my surgeon’s office that the band didn’t have any latex (I have an allergy), so that was a relief. Google didn’t help answer my “is it gonna hurt afterward” inquiries. I envisioned myself squirming for days, sitting on a donut pillow, walking like I had just ridden in a rodeo.

Am I? Nope!

SO I wanted to share my experience, in case any of you were ever diagnosed with internal hemorrhoids and needed to undergo band ligation. But, realize that every person is different…and this is my experience.

Once in the exam room, the nurse took my blood pressure and laughed at my lame jokes. Then, I was asked to strip from the waist down and to drape the paper blanket over my lap. He left and gave me the privacy to shed my pants and skivvies, I took a precursory look at the small tray of tools and blob of lube, and hopped onto the exam table.

I was literally in and out of that office in 20 minutes: start to finish. The actual procedure took less than five minutes!

Dr. Matthew Schulztel arrived with big smiles and a warm handshake and it was time!

I was worried there’d be some type of numbing injection. Nope. Nothing but the calm, soothing voice of my colo-rectal surgeon warning me of sensations I may experience as tools went in and out.

Did it feel good? Nope. Was it painful? Nope. But it was uncomfortable…mostly just awkward. The doc lubed me up real well first, then a big metal tube went into my butt (I presumed to hold it wide open). Once my body acclimated to the intrusion, it wasn’t too uncomfortable. Then he inserted the little metal rod device that had the rubber band on it. I could feel it as the tool bumped around inside my poopchute, and could feel an odd sensation as the hollow-tube that housed the band surrounded my hemorrhoid. “You’re gonna feel a pinch,” he warned. And yep, just a slight pinch as the band was placed at the base of my ‘rrhoid. A few deep breaths, the tools were removed, and all was back to normal.

As I laid there on my side, knees together up to my chest, all I could think of while he was inside was how oddly similar this felt to a pap smear; just in a different hole. It really wasn’t as awful as my brain thought it was going to be!

I go in on August 28th for my second hemorrhoid to be similarly attacked.

He did warn that I may feel like I have to poop because of the weird band around my ‘rrhoid; at least until it fell off in one to four days, he even thought it may just fall off today! As I got dressed, I marveled on how I couldn’t feel anything. I even sat down on the chair (gingerly, at first) to put my boots on. I didn’t feel a darn thing!

But as I walked toward my car in the parking lot, I felt exactly what he was talking about. And the car ride back to work. And even now as I type this up for you. An unmistakable urge to just go void my bowels. I’m glad he gave me the head’s up. Have I tried to poo yet? Nah. I’m just gonna nurse this li’l feeling for a while.

Curious about the tools used? Let’s see what Dr. Google shows us. There are lots and lots of brands of tools, and I’m clueless what he used, but here’s a general idea:

hemorrhoid bands for ligation
The band: these teeny, tiny black bands are what get the job done! Once secured around the base of the hemorrhoid, the blood supply is cut off and the little ‘rrhoid dries up and falls off. Alibaba, lucid O bands
Anoscope
The butthole opener tube: I’ve learned it’s called the anoscope or proctoscope. It’s hollow once you pull that handle-portion out. It totally keeps things open and unencumbered for the physician to do his business. Courtesy of Henry Schein Medical, Item No. 4268469
band ligator cone
The band-spreader thingy: the rubber band goes on the tiny tip of this little metal cone, then gets slid up and loaded onto the next tool. And the cone goes away now; it’s job is done. Photo courtesy of Medline, Item No. MDS6840410
The band delivery device: the band goes around the hollow round tip (the cone doesn’t remain attached once the band is around the round tip). That hollow tubed-tip slides inside the anoscope, into the poopchute, over the ‘rrhoid and, once in position, the plunger gets pressed and the rubber band slides into place around the base of the hemorrhoid. Medline, Item No. SKA801910

And, of course, luuuuuuuuuuuuube!

If you’re going to have your own internal hemorrhoid ligation, I hope this eased some fears for ya and answered some questions. I’m all set to go in and do this again in another month!

Bye bye hemorrhoids!!!

~ 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

Group shot of 2019 Bloomin' Uterus Endometriosis Walk; San Diego, CA
2019 Bloomin’ Uterus Endometriosis Walk; San Diego, CA

And suddenly, just like that, it’s Friday already!

Today’s quote is for my fellow Warriors. This one, right here, is for YOU:

“Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.” 

― Lori Goodwin

Remember how strong you are. How far you’ve come. How much you’ve endured. But, most importantly, understand that you are flanked by your fellow Warriors, standing side by side, hand in hand. You are not alone in this fight.

Maintain strength, even in the scary moments. And, if you need it, reach out for the Warrior beside you. ❤

Love, Lisa

Blogs I Updated This Week:

Bladder & Endometriosis: added a 2019 study of a woman who complained of menstrual cramps, painful urination, and an inability to hold her pee in. Guess where they found Endo? Yep, I know it’s rare, but it happens.

Endometriosis & the Bowel: added a 2019 study of a 35-year-old woman who had complaints of abdominal pain, bloating, constipation, and cyclical rectal bleeding. They thought she had a possible carcinoma inside her guts, but it turned out to be (you guessed it), Endometriosis.

Endometriosis & the Lungs: added a 2019 study of a 37-year-old woman who ended up having Endometriosis inside her lungs along the pleura lining. Her surgeons were able to successfully excise the lesions and she was sypmtom-free nearly three years later.