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.
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.
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.
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.
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.
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.
Holly was clinically diagnosed with Endometriosis when she was 15 years old,and received surgical confirmation two years later. Now 33 years old (and nine excision surgeries later), she shares her Endometriosis story with us today:
Holly’s Journey: Some would say I was lucky. I was 15 the first time I heard the word “endometriosis”. I had no idea what that meant for me or for my or exactly how unlucky I would be. I was a sophomore in high school and my mom had taken me to my pediatrician because I was missing time from school and complaining of pain and severe nausea surrounding my period. My pediatrician immediately said “That sounds like endometriosis.” and referred me to a gynecologist. I went to the gynecologist and he stated my symptoms were likely endometriosis and decided to put me on a birth control pill to try and help with my pain.
Hi guys! You know me: I meet a vendor, I fall in love with their product, and I share it here with you.
You may remember a few years ago when I blogged about my microwaveable heating pad made by Pelvic Pain Solutions. I love it. And still use it. And the best news? They’re coming back in stock soon! YAY!
Today, I wanted to share about their coccyx pillow. I use one at work. And I had one for my home computer chair, but recently gave it to my mom! The one at home is the “travel/foldable” version and it went with me to my car as well as restaurants and outings (when those were a thing…).
I sit at an office chair eight hours a day. The pillow alleviates a lot of stress, tension, and discomfort. And was so helpful in getting me back to sitting at the unpadded computer chair at home after my recent surgery.
Mom sat on it and said her tailbone pain immediately vanished! Then she leaned against it draped on the back fo the chair and her neck pain vanished! So…I gave it to her. And just ordered another one!
Babette, the gal who owns and runs Pelvic Pain Solutions (Yay for small business!) is also an EndoWarrior. Which is one more reason I’ll continue to support her shop!
I’m so in love with Babette and her products and gushed and raved about how wonderful my mom loved them, too! So, what did she do?
She offered a discount code to our Bloomin’ Uterus readers! One-time use only, but get 20% off of your very own coccyx pillow..whether it be the full-size version or the travel version! The code is PRETTYPUPPY20 (yes, we named my pillow “Pretty Puppy” ’cause it’s a gorgeous shade of coral).
Go shopping! I purchased the foldable/travel bleach-cleanable pillow in coral, but she has so many options to choose from! And…I also picked up a bottle of hemorrhoid/fissure cream for my recent butt-adventures (I ran it by my colo-rectal surgeon first, so yay, it’s butthole-doctor-approved!).
Check out her goods.
And see if the coccyx pillow eases any of your pains or discomfort. And lemme know how you like (or don’t like) it…
Be well!
PS – I don’t make anything off of endorsing Pelvic Pain Solution’s products. I’m just sharing because of how much I love it. But moreso because of how much it helped my Mum. And Babette’s generous offer of a discount code to our readers.
On October 21, 2020, I went in for my tag-team surgery with my fellas: Dr. Mel Kurtulus and Dr. Matthew Schultzel. Each had their own specific tasks while they worked together to make sure I was happy, healthy, and well:
Dr. Matthew Schultzelwas going to inspect and remove a portion of my sigmoid colon which had deep-infiltrating Endometriosis (discovered during my May 2020 surgery);
Dr. Mel Kurtulus was going to peek around inside to see if I had any new Endometriosis growths since May or any scarring or other things that may need to be cleaned up.
If this sounds familiar, we did a similar tag-team effort with these two amazing surgeons back in November of 2018, but for the opposite side of my colon.
The best part? I have had ZERO, zilch, nada, no pre-op pains! The only pain I’ve had since October 21st has been healing from surgery! My November pain journal screamed of the difference in my symptoms and Endometriosis pain!
It’s December already?!?! I go back to work in just a few days! And I feel fully recovered from my surgery, with the odd pop of incision pain here and there.
I’m SO excited to share November’s pain journal with you!! SO EXCITED that I even recorded a little video of it!! It’s relatively short, shows the trackers and my mug…lots of me talkin’! This is a first…
I know I’m late in publishing October’s journal, but this week is the first time I can comfortably sit at the computer, even for just an hour at a time. And I’ve updated my pain logs since surgery (finally!), as well as my data spreadsheets! I’m so excited!
I’ll update you on my surgery (what they did, what they found, what they removed) in a separate post, but the pre- and post-op pain is a night and day difference! And the pain I’m now experiencing is me healing from the intense surgery…and I mean intense.
Okay, on with the show! (I cannot wait to update you on surgery!! Stay tuned for that post!)
What a painful week I’ve had. I hope your week has been better.
So all I have in me is what I stare at every day on a bracelet:
“Nevertheless, she kept on fighting.”
I have my bowel resection surgery on Wednesday at 12:15pm. I’ve never been more ready. I still harbor that small nagging doubt that they’ll open me up and not find any Endometriosis, but it was there in May. It’ll be there in October. It’d better be.
Bloomin' Uterus 