WARNING: THIS POST MAY CONTAIN GRAPHIC AND/OR HILARIOUSLY DISGUSTING DESCRIPTIONS OF DOCTOR’S VISITS, BIOPSIES, RETROVERTED UTERINE ISSUES, AND ADENOMYOSIS/CYSTIC OVARY SYMPTOMS. IF YOU CAN’T BEAR TO READ STUFF LIKE THIS- SPOILER ALERT- GO AWAY NOW.
“Pet Peeve #545:
When ALL your specialists and primary care doctor feel your issues are gynecological, yet your male gyno thinks everyone is wrong and refuses to listen to you OR EVEN TEST YOU until you stick a proverbial foot way up his ass”
This blog started out primarily because of my freakish reproductive system (hint, Maisie).
It is only fitting that I update the trials and tribulations of my nearly 50 year old reproductive organs.
Let me preface this by saying, I am not in menopause and my body doesn’t seem to know it is a-coming. My menstrual cycle is consistently 28-30 days.
I also was born with a retroverted/tilted/ass backwards uterus. Such conditions can worsen over time from childbirth or other uterine issues.
According to Wikipedia, it is defined as:
“A retroverted uterus (tilted uterus, tipped uterus) is a uterus that is tilted posteriorly. This is in contrast to the slightly “anteverted” uterus that most women have, which is tipped forward toward the bladder, with the anterior end slightly concave.”
“Tilted posteriorly” means tilted towards your ASS, ie, posterior. Mine is particularly tilted waaaay back, which makes basic bodily functions more difficult over time- more gross details to follow later.
Oddly, I started having some very strange symptoms that became progressively worse in the years after Maisie was born. I went to specialist after specialist to no avail. Gastro docs, urologists, nephrologists, rheumatologists, gynecologists, pain specialists who simply wanted to get me hooked on pain pills, which I refused- nobody could figure out what the hell was wrong with me.
I had lower back pains and kidney infections that did not start out as urinary tract infections- and I’ve never really had bladder infections prior to this, though I’ve had kidney stones before. They kept coming back, no antibiotic seemed to help. My doctor sent me to every specialist she could think of. My bowels stopped working regularly. I had to take massive stool softeners and even that didn’t always help.
Everything, every test came back normal. I was starting to feel like I was losing my mind, but I KNEW something was wrong.
(for my rant on what I pay for my crazy expensive healthcare insurance, go here)
I KNOW my body and I am pretty much a health nut. I live a Ketogenic lifestyle. I rarely drink and never have been much of a drinker. I don’t ‘party’. I love to cook healthy meals. I work out a lot- I am a FitBit freak and try to get at least 10k-20k steps a day, mostly for the endorphins. The few prescriptions meds I must take, for high blood pressure (another genetic pain in the ass) and GERD, I do religiously. I don’t have depression.
I mean, I HAVE to take care of my health. I had a baby at 45.5 and I want to live to see her grow up. There can be NO room for error at this point. My child needs me to be healthy.
In mid-December 2017, my primary care physician ordered an ultrasound of my pelvic region. The results were complex septated cysts in my left ovary, thickening in my uterus, etc. Complex septated cysts are considered a bit more dangerous than regular ones.
My paternal grandmother died of ovarian cancer at my exact age. Her daughters and one son all carry the BRCA1 mutation. 3 out of the 4 girls had BRCA1 breast cancer. My father was fortunate- he was the only child out of 6 to not have the mutation. Unfortunately, even though I am not a carrier, this still increases my own chances of gynecological cancers.
A MRI was recommended as a follow up. Because we couldn’t get the MRI approved by the insurance company, we had to go with a 6 week follow up ultrasound.
On top of this, I take care of my family- and I mean everyone, including extended family. I am the medical POA for many and the patient advocate for the rest.
I spent months in San Diego this year (and the end of 2017) sleeping in a trauma unit with a family member who was in a catastrophic motorcycle accident- and taking care of them once they were discharged. I only came back to Michigan because of my own health issues.
While in Encinitas, CA, I had my follow up ultrasound at Scripps hospital. It showed no change in the cyst size, but my uterus was getting larger, with new polyps and fibroids and thickening of the uterine walls.
Armed with this info, I sent the ultrasound results to my primary doctor in Michigan. She felt it was urgent that I come home and get this checked out, since my ‘fancy’ insurance didn’t work in the state of California and my pain and symptoms were worsening by the day.
We set up an appointment for March with a gynecologist and I forwarded all of the info from CA to his office a month ahead of time.
I planned for fly back home to MI in March for my scheduled appointments and be back in CA to take care of my family member after the appointments, as they still could not care for themselves.
It didn’t work out this way.
Little did I know, there was going to be a fight on my hands just to get my MRI and to be taken seriously, as his staff did not put the 2nd ultrasound in my chart…
(to be continued in part 2 with the discovery of adenomyosis, cancer biopsies and testing, and my journey towards hysterectomy)