Feel Good Fridays

Photo of people riding a roller coaster, circa 1961
“Giant Roller Coaster” (1961) courtesy of Vancouver Public Library

January ends today! We’re already one full month into 2020. Where did the time go? How was your first month of this new year? Ups? Downs? Struggles? Victories?

Today’s quote is exactly that: full of ups and downs and a bit of encouragement.

“My life is a roller coaster on golden wheels; IT IS NEVER GOING TO BE PERFECT but I am glad for the perfect moments”
― Daniel Derrick Mwesigye

May your weekend be wonderful. And if it isn’t, and you need someone to talk to, reach out to me. I’m here for you. ❤ And may you find those moments of peace and perfection in your life.

Love, Lisa

PS: I’m in LOVE with today’s photo. The man in the front row compared to the woman in the 4th row speaks volumes. ❤ Ups and downs, indeed!

Blogs I updated this week:

Bladder & Endometriosis – added an Oct. 2019 study of a woman who complained of painful, burning pee. All of her lab tests were normal. An ultrasound and MRI found a mass inside her bladder. Upon removal, it was confirmed as bladder endometrioma.

Endometriosis & The Appendix – added a Nov. 2019 study of a 33-year-old woman who had right-sided pain, nausea, vomiting, and loose stools. Another case of Endometriosis on the appendix!

Inguinal Hernial & Endometriosis – added a Nov. 2019 study of a woman with a suspected inguinal hernia, femoral hernia, or enlarged lymph node. Of course, it was Endometriosis. A second November 2019 study followed a 47-year-old runner with a lump on the right side of her mons pubis that had been painful for six months. I also added a Dec. 2019 study of a 41-year-old woman who complained of a mass near her right inguinal region. Was it a tumor? A recurrent hernia from four years prior? Nope. It was a mass of Endometriosis.

Another case of skin Endometriosis – In her cleavage!

A close-up of cleavage beneath a tank top
“Cleavage” by Earls37a

Wait? What?!

You read that right. Another instance of cutaneous Endometriosis: this time between a woman’s breasts! Yeah yeah, I know cutaneous Endo is SUPER DUPER rare…but it does happen…

On December 17, 2019, the Journal of Endometriosis and Pelvic Pain Disorders published an abstract online. The physicians, surgery center, and laboratory are all located in Iran, so I’m assuming the patient is also located in Iran. I don’t have access to the full literature, but the here’s my brief synopsis on the abstract.

A 24-year-old woman complained of a lesion between her breasts that would occasionally discharge fluid. She underwent various diagnostic tests and eventually the lesion was excised and biopsied. The abstract leads one to believe it was diagnosed as Endometriosis.

Again, I cannot stress enough: if you have a weird lump, bump, mass, or lesion where it shouldn’t be: go to your doc and get it checked out. If you haven’t already read my blog on Endometriosis and the skin, please go give it a read for several other examples. Thanks and have a great day!

Resources:

Journal of Endometriosis and Pelvic Pain Disorders (Dec. 2019, Abstract) – Skin Endometriosis Between the Breasts of a Young Girl: A Case Study and Literature Review

~ 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

EndoFound Announces 2020 Medical Conference, Patient Day, and Blossom Ball

Endometriosis Foundation of America's title information for Patient Day 2020, March 14, 2020 in New York

If you’ve followed my blog since the beginning, or even recently started reading, I hope you know how much I respect the Endometriosis Foundation of America and how they’re trying to influence the medical and civilian communities, as well as better research and understand Endometriosis.

Every year they host a medical conference to educate physicians around the globe about new research, technology, and to discuss various topics on the disease.

And very year, they host the Blossom Ball. It’s their annual fundraiser.

But did you know that they also host a Patient Day every year? This year it will take place on March 14, 2020, in New York. A day that Endo Warriors, Survivors, their caregivers, and advocates can gather together to learn and share. This year’s registration is $50 per attendee. One of these days – ONNNNE OF THEEEEESE DAAAAYYYYSSSSS – I’m gonna go!!! ❤

If you’re in the New York area, or able to travel to it, you should go! And tell me ALLLL ABOUT IT! Spread the word. AND do what I did: share the medical conference information with YOUR Endo surgeon, gyno, PCP, etc.! Maybe one of them can attend and leeeeaaarrrrnnnn moooooorrrreeee!

Feel Good Fridays

Ocean waves crashing on rocky shore under white clouds

Its FRIDAY!

So yesterday I cam home to a great big letter from my insurance company stating they’ve denied my physician’s request to perform hypogastric plexus nerve block injections for my pelvic pain. He’s had numerous Endometriosis patients have great results with this procedure and their pain.

Why did my insurance deny it? It wasn’t considered a medical necessity. And the only medical necessary reason they approve this procedure? Patients who are suffering from pain due to cancer. We have 180 days to appeal the decision.

I read the letter. My heart sunk a bit. But then it flip-flopped. I took a deep breath and had a talk with my husband:

  1. Did I really truly want these? I still don’t know the answer to that question;
  2. I have a meeting with my gyno/excision surgeon, Dr. Kurtulus, on February 4th to discuss my symptoms, pain, and desire for a peek under the hood, any needed excision, and a hysterectomy (suspected Adenomyosis)
  3. Will this denial letter bolster that decision-making process?

So I wrote a letter to my pain management doctor today to inform him of the insurance’s denial and the lack of CONSTANT pain. Maybe it’s not a horrible thing? I did ask if he’d like to appeal or wait until after my February 4th meeting with Dr. K to discuss an appeal. We shall see.

But what did I learn last night? That quick deep breath and analysis took away the strife of receiving a denial letter. Which leads me to today’s quote:

“Free your mind and be in flow of life’s ups and downs. Be accepting of wherever you are on your journey”
― Karon Waddell

Wherever you are, take that deep breath, find some acceptance of it, see if you can sway it at all. If not, accept it. Let it wash over you. And if you need help, I’m right here for you. Always.

Much love,

Lisa

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.

Feel Good Fridays

Today I am not feeling well. It’s not Endo – related, but I feel like I’ve been run over by a truck and I’m exhausted and all I want to do is stay in bed.

So I took today to stay in bed. I have very limited sick days at work, would have come to understand the value of honoring your body when you can.

And I want to remind each and every one of you to do the same. We only get one life, one body, one chance. So take care of it in any way you can.

May you have a wonderful weekend.

Much love to you.

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.