Jen reached out to us to share her story about her diagnosis with Endometriosis. Now seven years after she found out she had the disease, see how she’s doing today…AND if you’re in the Sarasota, FL, area and hosting any Endo events or need a local EndoSister, here’s your gal!
Jen’s Journey: I was 23 when I was diagnosed with endometriosis, it took Doctors 5 years to diagnose me, I was lucky it wasn’t longer like most. I never had bad periods, but I did have extreme cramping & headaches. I feel pregnant a lot of the time & unfortunately I have to deal with that feeling knowing I’ll never have another child because I had a complete hysterectomy when I was 28.
“What would life be if we had no courage to attempt anything?”
And it’s true! Do you have an idea? Make it happen! Do you wish there was (fill in the blank) in your town? Start it. You want to chop off your ear and give it to a prostitute…well, no, don’t do it…
I’m inspired by my good friend, and EndoSister, Donatella Soul. She has an idea and she confronts it like a freight train! She’s so passionate and organized and talented and and and – and I can go on and on.
So, you, yes you – what have you been wanting to do? Just go make it happen. And happy weekend!
Donna lives in Britain and was in her early 20’s when she was diagnosed with Endometriosis. Nearly 20 years later, she tells us her story…including something that happened to her eyes about 10 years ago. She continues to live with Endometriosis and her eye-issue.
Donna’s Journey: Hi my name is Donna, it all started when I was nine years old when I started my periods. My childhood was ripped away from a very young age. I never had normal periods my cycle was every 14 days. When I would bleed I would often drench the bed with blood. My Mum took me to my doctor and he decided to put me on hormone replacement tablets to begin with. The pain I would experience was unreal yet no one really understood. Year in and year out my periods stayed at a 14 to 19 day cycle.
Well, I’m a day early; I know…but I’ll be making a road trip to see family and won’t have a chance to share tomorrow. So, today it is!
I respect my gynecologist so very much. While sitting with him to discuss recent test results, and my displeasure at my insurance’s handling of a situation, he encouraged me to write a letter, which I did. He had done so that week already.
The long and short of it is the medical group has decided that HMO patients can no longer have imaging studies performed by my doctor; that we have to be ushered to an off-site facility to have a complete stranger perform the test, then wait a few weeks to hear the results. PPO patients are still able to have their imaging studies done by my physician…but not HMO. It was stressful.
But, my doctor said something that resonated on so many levels
“You may not only change your own life, but the lives of others.” ~Dr. Mel Kurtulus
Take that to heart. And know that your little actions may very well influence many.
Have a wonderful weekend. I intend to.
Update: January 7, 2021; Several months after this entry, I heard back from my HMO’s medical group. Due to the letter I wrote, they re-approved Dr. Kurtulus to perform in-house ultrasounds. YAY for small victories!
After two weeks of wringing my hands, getting all worked up, losing sleep, crying, being in a depressed funk, and trying to breathe and stay calm while wearing a smile, I have peace. I was finally able to sit down with my doctor today to discuss the results of an ultrasound I had two weeks ago and how my Endometriosis is doing.
Have you heard of DiseaseMaps? A visual way to see people around you that have Endometriosis…and to reach out and say hello. There are also categories for researchers and doctors, too. Curious? You can view the map without signing up.
On a personal note, I don’t know this company and have no personal feedback on the site, as I just signed up. 🙂
So, I’ve worried less this week about my upcoming doctor’s appointment…but it’s still in the back of my mind. Figured I’d go through quotes about worry and anxiety. And found one that made me laugh out loud…again and again. So, today’s choice:
Justin Halpern wrote, “Sh*t my Dad says,” which is just random little quotes from his father. And today’s has to do with worrying. And bacon.
“You worry too much. Eat some bacon…what? No, I got no idea if it’ll make you feel better, I just made too much bacon.”
Ha. It immediately made me stop thinking about Tuesday’s pending appointment…and now I want bacon.
When I was getting ready to get wheeled into the Operating Room back in 2014 for my cystectomy, my Doc tells me that if he gets in there and there’s extensive damage, he may need to perform an oophorectomy (pronounced oh-uh-fuh–rek-tuh-mee). I signed the permission slip/waiver without blinking and off we went. Luckily, he didn’t have to perform one. And this turned out to be my Endo diagnostic surgery. Quite the day.
One of our readers & fellow blogger, SnowDroplets, asked the other day if I could look into the pros & cons of oophorectomies, when to have them, and hormone replacement therapy after the ovary(ies) is removed (especially how it may affect with with Endo). You know how I love to learn about new things, so here goes! And thank you, SnowDroplets, for asking this question. I learned A LOT today.
You may have read some of my previous blogs about biomarkers…blood tests for things which may help doctors diagnose Endometriosis without surgery, such as CA-125 levels. There are a lot of hopes that indicators may help save costly diagnostic surgeries, surgical risks, and painful recoveries.
A study published on May 1, 2016, reviewed 141 past studies and analyzed the data.