How are you doing through all of this?
Sometimes you go through things that seem huge at the time, like a mysterious glowing cloud devouring your entire community. While they’re happening, they feel like the only thing that matters and you can hardly imagine that there’s a world out there that might have anything else going on. And then the glow cloud moves on. And you move on. And the event is behind you…” ~Welcome to the Night Vale
This too shall pass. Stay safe out there!
Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.
Heather’s Journey: My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.
I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.
After being in an abusive marriage of over 11 years I also suffer with PTSD severe anxiety. It’s been a rough road to travel but I have my supportive husband, wonderful parents and Endometriosis Sisters to help brighten my day. I started modeling at the age of 36. I’ve been in two tv commercials and am a published model. I’m also part of Models With A Cause representing women with chronic illnesses.
I started Heather’s Hope Endo Strong by myself 4 years ago. I do post on chronic illnesses and mental illnesses. Being an advocate has helped me meet other Endometriosis sisters and help raise awareness all over the world.
If you would like to reach out to Heather, please feel free to do so via Facebook.
I want to send a special Thank You out to Heather for being brave enough to share her personal story, struggle, and victories with us today.
And if YOU would like to share your story, you can do so. 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.
MariaElisa am was diagnosed with Endometriosis this year at the age of 25 after a 10-year struggle for answers.
MariaElisa’s Journey: I got my first 10cm cyst at age 12, delayed removing it because I was “too young”. Once they decided to do emergency laparoscopy it ruptured and had a torsion which damaged my right ovary and Fallopian tube.
Got my first period at 14, all seemed normal until I turned 16. Severe, heavy painful periods. They started to become more irregular and i was left in debilitating pain on my legs and lower back. Doctor after doctor kept telling me being a girl with these pains isn’t anything to be worried about because my sonograms and paps were “normal” except my enlarged left ovary which I’ve known about for years.
But no obgyn ever realized how painful all these procedures left me on my insides, until one day I came across a few pages of girls who lived near me and I got referred to a specialist who knew what he was talking about and does excision.
He was the first to ever tell me how inflamed and aggravated my pelvis was and saw how painful it was when he did the exam. A month later after 10 long years I had surgery to confirm I wasn’t crazy or seeking attention! I lost a lot of friendships and relationships along the way because I was simply being a “flake” of constantly having pain. I still manage to work two jobs and live a semi normal life and try to distract my pain as best as I can!
My inbox is always open for others who feel alone !
Words of Advice: Never ever give up on searching for answers ! We all know our bodies and when something is wrong!
The Last Word: Advocate until you find accurate answers from well known physicians ! Excision is standard care not ablation! When you’re offered drugs such as orilissa or Lupron please do research to make sure you know every detail and side effects and whether or not it’ll be good for your body!
If you would like to email MariaElisa, please feel free to do so.
I want to send a special Thank You out to MariaElisa for being brave enough to share her personal story, struggle, and victories with us today.
I am so sorry it took me so long to share your post… and I hope you’re doing well!
And if YOU would like to share your story, you can do so. 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.
Hi Readers and friends!
I wanted to take a moment to tell you that although times are uncertain and stressful right now, please remember to take care of yourself in all ways possible. And please be kind and courteous to others.
This too shall pass.
Much love. Lisa
Living in Manchester, Ashlea was 21 when she was diagnosed with Endometriosis. Today she’s 29 years old and shares her Journey with us.
Ashlea’s Journey: I wish there was a cure out there. It effects lives, effects careers, effects relationships…
The awareness needs to be made so other people wouldn’t have to go through what I have at the age of 29.
I have had 10 surgeries, numerous pills & medications injections, I have had a complete hysterectomy at age 25, I was told I would never be able to have children. However, I’m so lucky I got my miracle baby at age 22.
And just recently Feb. of last year I had laparotomy and left salpingo oophprectomy, because the small percent chance after my hysterectomy of the endo coming back was me I got it back I went through all that for nothing.
I am now in early menopause I am age 29 this a horrible illness has took over my life and career. I have to deal with this emotionally and physically all because off endometriosis. Since all these surgeries my bones are all weaker my muscles are weaker I have back problems bone problems, for such a young age this horrible disease as affected my everything I wish everyone had the knowledge and facts of this horrible disease we need this out there it’s effecting to many women I wish there was also a cure that could change life’s before it changes you. happy to share my story and endo journey.
Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help
Words of Advice: Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help
If you wish to contact Ashlea, you can email her.
I want to send a special Thank You out to Ashlea for being brave enough to share her story!
And if YOU would like to share your story, you can do so by clicking here. 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.
Happy Friday! I hope you’re doing well. And if you’re not, I want you to know that you CAN get through this. We’re all here for you.
Today’s quote hit me in The Feels. It’s you. And I. And all of us.
“Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.”
― Jodi Picoult, Second Glance
To those of you who have personally “unwound my knots” you truly are my heroes. And it’s my pleasure and honor to help others unwind theirs.
Much love to you.
Lisa
MARCH! Endometriosis Awareness Month! My Facebook newsfeed has exploded with EndoWarriors posting amazing things every day and I love it!
So, today’s quote IS US!
“Drop upon drop collected will make a river. Rivers upon rivers collected will make a sea.” ~Sa’di (1213-1292)
We are numerous. A mighty force. We stand together. WE FIGHT TOGETHER!
May you have a wonderful weekend! And if you need me, I’m here.
Bladder & Endometriosis: Added a January 2020 study from ACTA Scientific Womens Health about a a 46-year-old woman who had complaints of painful, long, and heavy periods. She also had difficulty urinating, peed frequently, felt pain when she peed, and sometimes had blood in her urine. Turns out she had Endometriosis inside her bladder.
C-Sections & Endometriosis: Added an August 2019 study from MOJ Clinical & Medical Case Reports of a 28-year-old woman who had painful swelling beneath her c-section scar. I’ll give you one guess what it ended up being…
Endometriosis & the Bowel: Added a January 2019 study from Paripex of a woman who had a mass of Endometriosis inside of her sigmoid colon…that actually prevented a full colonoscopy from being performed.
Endometriosis & the Lungs: Added a January 2020 study from the Thai Journal of Obstetrics & Gynaecology of a 49-year-old woman with a history of spontaneous pneumothorax. Surgery finally confirmed the presence of Endo lesions in her right lung and her diaphragm, but she had no other evidence of pelvic Endo, nor other symptoms of Endometriosis. Five years after her surgeries, she was still symptom-free.
February. Man. What a weird month for pain and symptoms…
Pain started around February 5th and continued nearly the entire month. I also took a staggering amount of Ibuprofen, none of which was related to my Endo symptoms. I did need several Naproxen and two separate halves of Tramadol, thought.
And although I spotted for several days, I technically didn’t have my period. The spotting took place far off of what would have been my normal period. And when I brought it up to my gyno, they didn’t count it as a period, either. You know, the “first day of your last period” question?
At least the pain continued to only be located at lower left, lower right, and mirrored areas of my lower back. We’ll continue to monitor it and see what my surgeon finds in May.
Would you like to see the play-by-play daily journal?
And the super silver lining? I still have zero pain when I poo! I mean, I still need to figure out what I’m doing to upset my guts on the regular poop/diarrhea scale, but…that’s a work in progress. I know cheese is a big culprit, and likely booze. Meh. I’m not over-indulging in either…but I still feel like they’re both big players in my poo-game.
I’m participating in the Endo Month 2020 Challenge. And today’s prompt was “Surgeries.” And it made me sit back, take a deep breath, re-read all of my past surgical notes, and I want to cry. And I still have that terror in the pit of my stomach that my surgeon won’t find anything during my May surgery.
If we’re friends on Facebook, you’ve likely already seen this post. But now I want to know about yours.
Here’s mine:
Day 3: Surgeries? I’ve had four since 2014 and a fifth on the way. During each one, my surgeon has found and removed Endometriosis growths and accompanying ovarian/Endo cysts.
Endo has been found on my liver, on my diaphragm, on my sigmoid colon, on my small intestine, on my appendix, on my right intesine, on my ureter, on my fallopian tubes, on my ovaries, between my uterus and my rectum, between my bladder and my uterus.
It has caused extensive scar tissue which had to be removed. That scarring has stuck my uterus to my colon, stuck my bowels to my pelvic wall, stuck my ovaries beneath my uterus, stuck my ovary to my pelvic wall, pinned my bladder to my uterus. I’ve lost 7 inches of my intestines due to the illness (including my appendix) and both of my fallopian tubes were so badly damaged by the disease they, too, were removed.
There’s been a total of $521,571.10 billed to the insurance company. Of that, I paid $4,300.
Half a million dollars in six years. Four extensive surgeries. And the fifth is coming in a few months…..
Will it never stop?
~
Day 2: Endometriosis means an often misunderstood, misdiagnosed, and underplayed chronic, painful, and incurable disease
Day 1: My diagnosis took 22 years to receive: 22 years of being told my pain was all a part of being a woman, was normal, and I had a poor pain tolerance…
This challenge will be an awesome experience!
