Feel Good Fridays

May you all have a safe, happy, and satisfying holiday season.

I wish I could hug each and every single one of you reading this right now. There will come a day where it will be safe to do so once more.

Be well.


Blogs I Updated This Week:

Relugolix: An Up-and-Coming Treatment for Endometriosis Symptoms?: the FDA approved Relugolix (aka Orgovyx) for the treatment of advanced prostate cancer. The trial and approval process is still ongoing for the treatment of Endometriosis. Reminds me of … other Endometriosis “treatments”….Lupron anyone? Hopefully the clinical trials will reveal more about the side effects Relugolix has with Endometriosis patients.


Share Your Story: TR

They say sciatic Endometriosis is very rare, but TR has it. Diagnosed this year, at the young age of 24, she shares her story with us.

TRs’ Journey:   For several months I have had endometriosis in my legs and feet as well as in my bladder and lower back. My particular type of endo is the sciatica type. Every month I started feeling warm tingly pain especially in my stomach, legs and feet. Even on normal days I still had pain in my thighs. Sciatica endo is not the most commonest type of endo so answers were kind of hard to find online etc.

Words of Advice:  Persist in diagnoses.

If you would like to reach out to TR for more information about her sciatica Endo, or her journey, she’s allowed me to share her email with you today.

I want to send a special Thank You out to TR for being brave enough to share her journey with us today!!  Know that you’re not alone with your sciatic-Endo. Although rare, it does happen. I hope you’re able to find relief.  Yours, Lisa.

Paper with "tell your story" written on it

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

Yours, Lisa.

Share Your Story: Christine

Ahhh, France. I haven’t been there in years, and I do love the countryside, the people, the food, and the wine! Today, Christine shares her journey from France. Diagnosed at 46 years old, today it’s a decaded later.

Note: Christine’s story was submitted to us in French, which I don’t speak…so I’ve employed Google Translate to help (I apologize for any misinterperations)! I know it won’t be perfect. AND I’ll include her original submission, too.

Christine’s Journey:   When I was young I often had a stomach ache but we didn’t talk about endometriosis. In 2010, following crushing pains and severe inflammation, an operation was scheduled for torsion of the ovary. When I wake up I am told of a diffuse endometriosis. In 2013 recurrence with sigmoid attack. Years of hell. Late menopause at 56, I am finally released and I live again. This illness did not lead to a true initiatory journey which brought me back to basics and opened other doors for me.

(Original: Quand j étais jeune j avais souvent mal au ventre mais on ne parlais pas d endometriose. En 2010, suite a des douleurs terrassantes et une forte inflammation, une opération est programmée pour torsion de l ovaire. Au réveil on m annonce une endometriose diffuse. En 2013 recidive avec atteinte au sigmoide. Des années d enfer. Ménopausée tardivement à 56 ans, je suis enfin libérée et je revis. Cette maladie n a fait vivre un veritable parcours initiatique qui m a ramené à l essentiel et m’a ouvert d autres portes.)

Words of Advice:  Courage. With all of my love. (Original: Courage. Avec tout mon amour.)

I want to send a special Thank You out to Christine for being brave enough to share her journey with us today!!  And I absolutely love your words of advice. Courage, indeed. I’m so grateful menopause has granted you relief! ❤    Yours, Lisa.

Paper with "tell your story" written on it

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

Yours, Lisa.

Share Your Story: Melissa

Man and woman standing side by side

A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…

Melissa’s Journey:   I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.

Continue reading

Share Your Story: Jonnie

Woman with auburn hair wearing sunglasses and a burgundy tank top

Jonnie was diagnosed with Endometriosis when she was 20 years old. Now, 10 years later, she shares her story with us. It was a long journey before someone truly heard her. And she shares her story to encourage you to keep pushing until someone hears you, too.

Jonnie’s Journey:   I started my menstrual cycle on Friday the 13 in October of 2000. I was an avid swimmer and spent every summer competing with the neighborhood swim team. I assumed my lower back pain and fatigue was related to swimming, not my menstrual cycle.

Continue reading

Feel Good Fridays!

A business card with text that says "You are Unique. You are Wonderful. You are Important to the World."

Good morning! Happy Friday! 2020 is almost behind us (already?!?). And what a year it’s been.

Some time ago, I met an old man. I don’t remember where or how, but we made pleasant small talk and there were smiles. As we parted ways, he turned around, walked back to me, and reached into his pocket.

“You deserve this,” he told me as he held a small business card out. And it read:

“You are unique. You are wonderful. And you are important to this world.”

He smiled once more, and I never saw him again.

It was such a sweet and gentle reminder that I am those things. And for it to come, unbidden, from a stranger. There’s nothing else on the card: no advertisement, no business name, no contact information, no religious affiliation; nothing. Just a card with some beautiful affirming words that I apparently really needed to let sink in.

I love it so much that it sits in a little catch-all on the dashboard of my car. And I looked over on my drive to work today and the text peeked out from beneath my dusty sunglasses. I had forgotten about the card, the man, and the affect on my life.

Well, today, let his words and intent be reborn.

And that you are unique, wonderful, and important to this world.

You truly are.

Much love to you,

Lisa.


Blogs I updated this week:

Endometriosis & the Appendix

Added an Oct. 2020 study of a 32-year-old woman who had complaints of abdominal pain. Physical tests were normal. A CT scan showed an enlarged appendix. An appendectomy was performed and while the appendix looked like a normal case of appendicitis, the pathologist found microscopic Endometriosis.


Endometriosis & the Bowels

  • Added my own rectosigmoid junction bowel endometriosis experience and surgery.
  • Added an Oct. 2020 study of a woman who was bleeding from her rectum, had lower left quadrant pain, nausea, and vomiting. These symptoms developed over the course of one week. Turns out she had a large mass within her rectosigmoid junction that a biopsy revealed was Endometriosis.
  • Added another Oct. 2020 study of a woman who went to the ER with complaints of lower abdominal pain, nausea, and vomiting. She was treated for a small bowel obstruction, suspected Crohn’s disease, and sent home. Several months later, there was no improvement. Due to her worsening symptoms, she underwent a bowel resection surgery and pathology of the tissue confirmed Endometriosis.
  • Added a third Oct. 2020 study of a woman whose imaging studies were “abnormal.” She had cyst on her left kidney and a mass on her cecum. Surgery found the cecum to be twisted and it was removed. Pathology found “extensive endometriosis of the colonic wall” as well as two lymph nodes.

Endometriosis on the Skin

  • Added a Nov. 2020 study of a 40-year-old woman with a painful lump that showed up in her belly button out of the blue. It would hurt and bleed days before her period, and continue to bleed for the duration!
  • Also added a Dec. 2020 study of 45-year-old woman who developed a hard lump inside her belly button. Imaging studies confirmed the lump’s presence and it was surgically removed. Yep. A hard lumpy mass of umbilical Endo (aka Villar’s Nodule) was diagnosed. Five years later, and zero treatment, and the patient had no further symptoms.

Share Your Story: Caroline

Young woman in hospital bed giving two thumbs up and smiling

Caroline was diagnosed with Endometriosis when she was 13 years old, and her fight has been a well-fought and busy one! Now 15 years old, she shares her journey with us today!

Caroline’s Journey: My name is Caroline. I am a 15 year old girl and deal with endo in everyday life. Lets start with a little info about me. I am a competitive swimmer, my team is very intense.

I was diagnosed with endo at age 13. Before endo with many doctors and tests including colonoscopy, endoscopy, MRI, cat scans and lots of ultra sounds and internal and external tests the found nothing wrong with me. I did find out I had IBS and now am on medication. We really assumed all my chronic pain was that and constipation on weekly basis.

Continue reading