My name is Katie Owenby and I am a 37 year old living in Decatur, GA.
I moved to Atlanta from Seattle in 2001 for college and loved the area so much that I have lived here for 19 years. I like to live an active lifestyle. In the past I have done 6 sprint triathlons, played on two soccer leagues, and spent time rock climbing. My interests and activities have taken a backseat since I have been experiencing chronic pain from endometriosis over the past 3.5 years.
When did you get your first period?
I was 13 years old when I got my first period and was anxiously awaiting its arrival since most of my close friends already had theirs. I remember feeling excited and that I was experiencing a rite of passage. I really had no idea what I was in for.
What was your period experience like in high school?
During high school, I had what I considered a “normal” flow and minor cramps. My period has always lasted 8 days, which I also never considered “abnormal.” As I aged, my period became a lot heavier and my cramps more severe. Until I started purchasing period products for my wife, I did not realize that my heavy days were very different from hers. No one had ever asked me about it or told me what would be in the “normal” range, so I didn’t think about it until I noticed she used regular tampons at the same rate I was using supers with pads.
What changed since then?
I have a high pain tolerance in general and realized five years ago, that due to trauma, for most of my life I have dissociated from emotional feelings and physical pain. For that reason, I am honestly not sure if I experienced pain and other symptoms with my cycle before 2015. I do know that starting the fall of 2016, I developed chronic pelvic and back pain which became increasingly severe.
When were you diagnosed?
It took seven providers and two years until I was diagnosed with stage 4 endometriosis in August of 2018 during my first surgery. I had to travel from Atlanta to Orlando to find an insurance network provider with expertise in endometriosis to receive the diagnosis and surgery. At that time I was also diagnosed with Interstitial cystitis. During this surgery, my doctor excised all the endometriosis that she saw, which was all over my intestines and had attached my left ovary to my abdominal wall. I felt a lot better for about 2 months after this surgery and then began to have chronic low back pain, left hip pain down to my heel, muscle spasms, diarrhea, constipation and cramps, which are all common with endometriosis. After my surgery I even tried pelvic floor therapy for about 8 months and stopped when my pain was not improving at all (even temporarily).
The biopsy came back normal and disappointingly, she seemed unconcerned with my recurrence of pain.
In June of 2019, I traveled back to Orlando to have my surgeon perform a hysteroscopy, a D&C (dilation and curettage), and send off a biopsy to the lab due to her seeing “fluffy” tissue on my cervix from a pelvic MRI. The biopsy came back normal and disappointingly, she seemed unconcerned with my recurrence of pain. Later that summer, I decided to seek another opinion from a doctor I had heard of in Chattanooga, TN. He determined that I still had some endometriosis that was not removed during that first surgery and recommended that I get on some meds for Interstitial cystitis (which was not previously recommended to me), schedule another excision surgery, appendectomy, and a hysterectomy (I could choose to keep my ovaries or not, which I did) with him. I had my excision, appendectomy, and total hysterectomy (opted to keep my ovaries, but he removed my tubes) on October 24, 2019. I felt much better after surgery, but have been told that recovery takes a while and I am still having some chronic low back pain and occasional left hip pain. Overall, I think that this surgery has greatly improved my life and I hope I feel even better as I continue to heal.
Have you struggled with fertility?
Since getting pregnant has never been a hope of mine, I can't report any fertility issues. I have no idea if I was fertile enough to conceive had I wanted to.
Anything you wish you knew 10 years ago?
I wish I knew about endometriosis and other illnesses that affect women long before I struggled three years ago. I had to educate myself in order to find the right type of doctor to diagnose me and was dismissed by so many providers before I got that diagnosis. I wish I had known that the average gynecologist and primary care physician are often misinformed or completely uninformed about endometriosis, its effects on women, and the proper treatment for this disease.
And just for fun, if your period was an animal, what would it be?
If my period was an animal, it would have been a large rhinoceros. I often imagined it having a pointy head that stabbed me over and over!