Endo Diagnosis: Five years ago today

cake with a big number 5 candle on it
Birthday Candles by Andy Eick

My calendar has been reminding me every day this week that today is my five-year diagnosis anniversary…and I’m a maelstrom of emotions.

Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed.

Years of pain, telling my doctors, taking meds, cancelling plans, missing work, and accepting it as normal. And five years ago today, I learned the cause of my pain had a name: Endometriosis. I never would have received my diagnosis if it weren’t for a series of ultrasounds, a competent doctor whom I now cherish, and the appearance of a persistent cyst on my ovary:

Feb. 2013: pelvic ultrasound

May 2013: pelvic ultrasound

May 2014: pelvic ultrasound – possible dermoid cyst

May 2014: pelvic MRI

June 30, 2014: exploratory, diagnostic, and excision surgery! SURPRISE ENDO!…not a dermoid cyst.

Sept. 2014: pelvic ultrasound

May 2015: pelvic ultrasound

Feb. 2016: flexible sigmoidoscopy to check out bowels due to pain

May 2016: pelvic ultrasound

July 2016: pelvic CT

Sept 2016: 2nd excision surgery

May 2017: pelvic ultrasound

August 2017: pelvic ultrasound

May 2018: pelvic ultrasound

June 2018: pelvic ultrasound

July 2018: 3rd excision surgery (Endo remained on small intestines to be dealt with ASAP by colo-rectal surgeon)

Nov. 2018: 4th excision surgery and bowel resection

April 2019: pelvic ultrasound

Pending July 2019: pelvic ultrasound to monitor a possible endometrioma…

The journey continues…and the spinning maelstrom of emotions also continue to fester: Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed. Now with the possibility of the disease already being back already, add on: Scared. Nervous. Hopeful.

But my favorite part of today’s five-year anniversary? It led me to my Sisters and fellow Warriors, has given me new friends, and it’s brought me so much closer to my family. Endo given my a voice and purpose. It’s united all of us: Warriors and our Support. And we all fight together…not only for our own survival, but for one another.

Happy Big 5, Endo. Thanks for everything. ❤

Feel Good Fridays

Desert Tortoise crossing roadway, by Brad Sutton/NPS
Desert Tortoise crossing roadway, by Brad Sutton/NPS

Happy Friday!

I know a lot of my friends have had a rough week. Pain. Cancelled plans. Lots of self-care. Today is for you:

“It does not matter how slow you go as long as you do not stop.” ~Confucius

One foot in front of the other. Or, just stand still…for a moment. Then, keep forging ahead. And if you need it, reach your hand out. I’ll take it and we shall walk together.

Love you guys. Have a great weekend. ~Lisa

Blogs I Added This Week:

New Study: Elagolix vs. Lupron: Abbvie’s findings of which of their two drugs will be more cost effective for patients…(insert grumble here)

Blogs I Updated This Week:

Orilissa: Abbvie’s New Drug: added a June 2019 study showing women no Elagolix/Orilissa had improved work attendance (an extra 2-4 hours per week)

New Study: Elagolix vs. Lupron (Cost Effectiveness & Quality of Life)

Red apple and green apple
Comparing apples to…apples? Image by Freestocks.org

This will be a highly-charged opinion piece for me…so as you read what I am writing, please know that I am seething and upset and just needed to vent.

A study of Elagolix (aka Orilissa) hit my inbox recently and I just opened it today. It was run by Abbvie, of course. And it compares Elagolix to Lupron to see which is more cost-effective in possibly giving women with Endo a greater quality of life. So, it’s win-win for Abbvie since they make both of those drugs…

Elagolix was deemed the “winner” in that it costs patients less money and possibly grants them a greater quality of life with a possibility fewer side effects.

And why am I seething? That sounds great!

  • a) It’s the same damn company comparing two similar drugs that it manufactures,
  • b) both are laden with possible shit-tastic side effects,
  • c) both can only be taken for a minimum amount of time , and
  • d)…the best for last: San Diego’s own Dr. Agarwal is listed as an author, a consultant for Abbvie’s research, and he helped with the “inception, design, and analysis” of this study. The same Dr. Agarwal who accepted $315,000 from Abbvie from 2013-2017. And I’ve been told my many of his Endo patients that he often pushes Lupron and Elagolix for treatments.

Does it make me want to consider taking Elagolix to manage my Endo pain? Not one bit.

I was on Lupron for six months and it was one of the hardest things I’ve ever done, physically and mentally. Many people I’ve talked to had horrendous side effects and continued to have them long after quitting the treatments. And ABC 10 News interviewed several of our local EndoSisters about their Lupron experiences. It’s my understanding that Elagolix is very similar to Lupron…so I’ve zero desire to put my mind and body through such torture again…for a temporary, limited-use band-aid drug. But, I will always say this: don’t let my opinion sway you from a treatment option.

A fellow EndoSister, Magda, has a different perspective and she has given me permission to share her words today:

“I had a very good experience meeting with Dr A a few months ago finally so I don’t agree with a lot of the comments made about him. 

“I’m on a different study, for [redacted] which is similar but not one he is associated with and he thanked me for doing so even, and honestly my endo pain surprisingly enough I feel is quite nonexistent at this point, around 8 weeks in on non-placebo drug. Obviously if some saw me in a walker this last weekend it’s bc I need surgery on my hip from the labral tear because of a car accident but I’m beyond grateful that my endo is finally under control with one of the newest drugs out there for it, and with the addback therapy I haven’t seen any real side effects I’ve noted. In 2 weeks I’ll have my bone density rechecked so we can see where that is but I feel grateful to finally be on something helping control my endo pain, especially with limited side effects. 

“Since surgery is clearly not an end all option for our disease we’ve all learned maybe we should keep an open mind that there are some doctors out there that are truly trying to actually find a solution to at least help control our daily symptoms and in my opinion that is what Dr A is doing with his current practices, as a cure is not that simple. Unfortunately most diseases don’t have a cure, all kind of people take daily meds for all kind of things, like high blood pressure, diabetes, thyroid problems, high cholesterol, migraines, I could go on and on and on……trust me I get it. I literally cried my eyes out earlier this year the first day a doctor told me I was in denial that I had endometriosis and needed to be doing something about it, but mainly because I realized she was right. I also realized there are a lot worse things in life and in some case way worse conditions, especially some that don’t have a few pills that can help lower the pain levels or even possibly not help you in staying alive.

“So I count my blessings that I finally know what’s caused my pain, even though it took a long 21 painful years and a horrendous almost near death experience in the hospital last year just to get a diagnosis and finally know, but at least now I know and I’m doing something about it.

“That’s why I joined a study. To help not only myself but all the countless women who might still not know, and especially the children, more specifically the ones in my family that might be the unlucky ones to get this disease as well…..everyone has their own choices to make in life. I’ve made mine to help make a difference in any way I can. My question is what are you doing to help. If not others, at least for yourself. God put doctors and scientists on this earth to work on and help possibly eventually find cures, or at least medications that can help, that’s what the current studies out there are for. Without patients willing to help test the products, they will not be able to help us. And who knows, maybe you will actually feel better in the process. I know I do. And I at least have that to be grateful for. That’s my food for thought on this topic. “

Please, please, PLEASE do your own research and know what you’re getting into first: read the entire FDA drug pamphlets, analyze the studies, talk to others that have tried it, and question your healthcare providers. Most importantly: trust your gut. The decision is yours, and yours alone.

Resources:

Future Medicine – (Article, Feb. 2019) Cost–effectiveness of elagolix versus leuprolide acetate for treating moderate-to-severe endometriosis pain in the USA

Feel Good Fridays

Inviting couch

The end of the week already? And June will be done before we know it?!?

Today’s quote is a simple reminder:

“As important as it is to have a plan for doing work, it is perhaps more important to have a plan for rest, relaxation, self-care, and sleep.” 
― Akiroq Brost

Do not forget to find time during your busy week to do…simply nothing. Rest. Relax. Breathe. Take care of yourself. (Please)

Much love to you! ~Lisa

Free Endo Webinar: Dr. Leslie Wakefield

Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Are you available to attend a webinar on Thursday, June 27, 2019, at 1:00pm (Pacific Standard Time). Join them for the free online webinar featuring Dr. Leslie Wakefield. Dr. Wakefield will be discussing how how physical therapy can treat Endometriosis symptoms.

Registration is free, but is required. So sign up today!

A huge thank you to the Endometriosis Family Support Group for all that they do!

SAVE THE DATE! 2020 Bloomin’ Uterus Endo Walk

2019 Bloomin' Uterus Endometriosis Awareness Walk
2019 Bloomin’ Uterus Endo Awareness & Support Walk; photo by Richard T. Reyes

Save the date!

The Worldwide EndoMarch announced Saturday, March 28, 2020 as the date for next year’s walk. And although we aren’t affiliated with their march, we do like to have it on the same day.

Solidarity!

So, save the date: Saturday, March 28, 2020

Further details to follow.

…let the planning begin!

Feel Good Fridays

Back of Lisa's Endometriosis Journey tank top which shows each year of surgery and where endo was found
Back of shirt

As is my customary Friday morning tradition, I found myself back at my favorite bagel place for my breakfast and an almond milk hot chocolate. As I waited for my wares, I noticed a woman waiting in line eyeballing the front of my shirt.

If you haven’t seen the front, it’s a wonderful design, created by a friend, representing my insides after my Endo surgeries. Ha.

Front of tank top showing fun cartoon of uterus, no fallopian tubes, and a resected intestine
Front of shirt

Once she paid for her bagels, she walked right up to me with a big smile.

“I was standing in line reading the back of your shirt,” she said. “So then I had to try to read the front of your shirt to see what it is.”

“Oh?” I prodded.

“You’ve had quite the ride,” she said, with a li’l bit of sadness in her voice.

“It sure has been.”

“I’m familiar with the disease…” she said, leaving it open-ended.

Familiar? Did she have it? Does her daughter??? She looked to be in her sixties. “Are you?” I prodded further. “Do you have it?”

“No,” she smiled, “but I’m an OB nurse.”

We talked for a little while longer while we both waited for our bagel sandwiches and beverages. She seemed surprised at how extensive it could be, how entwined it can get, and how often my surgeries were warranted. I let her know that my pain levels were in a good place since my last one. She placed a warm hand on my shoulder, “I hope it stays that way.” And we said our goodbyes.

Such a wonderful way to start a Friday. And now? On to today’s Feel Good Friday’s quote:

“Finding healthy coping mechanisms are as essential as breathing fresh air

Find what works for you.

Do it with zest and fervor 

Unapologetically” 

― Renee A. Lee

For me, striking up conversations, spreading awareness about Endo, and making connections is a huge part of my coping mechanism and self-administered therapy. That being said, I know it’s not for everyone. What helps you cope? Let me know in the comments below!

I hope you have a wonderful weekend.

Love, Lisa

Blogs I Updated This Week:

Endo & Liver Function: added a 2019 study of a 42-year-old woman who complained of right quadrant pain, vomiting, and nausea. Turns out she had the super-rare Endo on the liver!

Share Your Story: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

As a result the Mirena embedded in the wall, and once removed, I bled for 2 months straight, and a walnut sized tumor grew. I then had an ablation done (Sept 2017) to remove the tumor to try and control the bleeding. I was okay for about 1 month, and the tumor started to grow back. I then had a full hysterectomy (May 2018).

I was okay for about 5 months, and then the pain in stomach (so horrible) I went for a endoscopy, and the Gastro Dr. believes I have endo on the duodenum, as there was tons of food at the bottom of my stomach after a 20 hour fast, so slow digestions when the endo is inflamed in that area.

I am also having pain at 3 of the port sights where during the hysterectomy instruments were used, and I am being told by the OBGYN they believe this pain and swelling is because I have endo in the scar tissue, and the only fix is surgery to remove the scar tissue at the sites, and there is no guarantee that I will not have more endo in the new incisions?

I now have to track the pain, so I know when the cycle is, and account for a soft food diet, easily digestible when it comes, as to minimize the pain. And as for the incision pain, I have been told to try PT for abdominal stretching, and pelvic floor exercises before scheduling more surgery. NEVER ENDS. I have not been able to find any info. on endo on the duodenum? Thanks.

If you would like to reach out to Jenny12, send her an email!

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I want to send a special Thank You out to Jenny12 for being brave enough to share her personal story, struggle, and journey with us today. I’ll be doing some research for Endo no the duodenum and keep you posted! And we’re all hoping you’re able to find further answers and relief!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: RDS

blonde woman laying on couch clutching lower abdomen in pain.  Photo courtesy of USDA blog
Original photo courtesy of USDA; re-edited by Lisa Howard

RDS is a 40-year-old woman living in Turkey, struggling to find answers and the medical care she needs.

RDS’S Journey:

I have had issues with my lower abdomen for years. It was always worse during my periods. Three weeks ago a new pain came on my right hand side. I thought it might be appendicitis, so I went to the emergency department. The doctor’s first performed an ultrasound, but couldn’t get a good view of the appendix. It was agony them pushing and searching for the appendix. In actual fact the appendix was behind the ovaries. Because the pain was intense they suspected appendicitis and performed a laparoscopic appendectomy.

Whilst operating however they discovered the reason why they couldn’t get a good view of my appendix: It was literally stuck to the right ovary. They said only the end of the appendix was inflamed and there was something around my ovaries. They cleaned that up, consulted a gynecologist, removed the appendix, then stitched me up.

I wish my Turkish was better to understand what was around the ovaries but I highly suspect endometriosis. The doctor’s did not give me any other advice ( it was a public hospital. In and out like a conveyor belt) and I was sent home. But I’m still getting pain and I think a gynecologist is the next point of call.

Our Response to RDS:

Hi RDS! I don’t have your email or a way to get in touch with you, so I hope that you can find this blog entry.

If you do find this, please email me. My gynecologist and excision surgeon is here in the United States, but he’s from Turkey. Perhaps I can ask him for any recommendations of where you might go to seek the medical care you need.

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I want to send a special Thank You out to RDS for being brave enough to share her personal story, struggle, and journey with us today. We wish you all the best in seeking your medical care and answers. And will be praying for you.

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.