One Woman’s Journey Through Medical Hell: Ridiculously High Costs, Apathetic Doctors, and Capitalism Impinging on our Right to Good Health
A personal account by Hillary Umland
At this very moment I am quickly flipping through my mental Rolodex trying to figure out what I own that I can sell for money for an out-of-state surgery that I have yet to set up with an endometriosis specialist I have yet to find, but it’s a long time coming.
Tandem bike I never ride, regular bike I never ride, CDs I never listen to, a stereo I never use… Thank you, endometriosis, you make every day a glorious joy. At the very least, you’re helping me purge my apartment of superfluous junk.
Almost a year ago I was found riddled with Stage IV endometriosis during a laparoscopy to drain a two-and-a-half inch complex filled cyst. Since then, my life has been one doctor visit after another, and me having to repeat over and over, “No, I do not want the Lupron shot. How about you cut me open and take it out?”
Maybe I should back up a little.
I have felt what I now know are the symptoms of endometriosis for over 20 years – the entirety of my menstruating life.
Some of my symptoms include abnormal, excruciatingly painful and heavy periods that can last longer than a week, sprinkled with nausea and vomiting, migraine-like headaches, and fatigue.
When I called my doctor or went in with complaints about having to miss school or life because I could not unravel myself from the pain-coil I’d become from my period, she would always say, “just take no more than the recommended does of ibuprofen or Midol and use a hot water bottle.”
Well, doctors know best, don’t they?
Endometriosis occurs when lining similar to the lining of your uterus sheds monthly is found outside of the uterus and anywhere else it latches itself to.
In my case, I have endometriosis implanted on nearly every organ in my abdomen, except for my liver. The wall around the liver is a different story. I even have some lesions on my diaphragm, which is highly uncommon and tricky to remove.
The three gynecologists I have seen have pushed the Lupron therapy on me since day one, but at 35, I am uncomfortable with spending who-knows how many months taking hormones to put me into a menopausal status, then loading me up with more drugs to combat those side effects, until I don’t feel symptoms anymore.
I would rather be cut open and have my insides ripped out, thank you.
Stage IV: Organs being lassoed together by endometriosis. Photo http://www.womens-health-advice.com/questions/endometriosis-stages.html
I have had the pleasure of undergoing a colonoscopy at 31, after over a decade of digestive issues (which I now like to attribute to the scar tissue on my bowel and intestines from endometriosis implants), which showed nothing wrong. I’ve also had a tube shoved down my throat (upper endoscopy) to see what all of my constant liquidy sounding belches and stomach upsets were coming from in my mid-20s, only to find nothing. There’s nothing I’ve read about the implants on my diaphragm causing this, but since it is on my gallbladder, maybe that’s an issue?
The gynecologists I’ve talked to only tell me that I should see a gastroenterologist because they have no way of knowing for sure that the endometriosis is causing anything more than painful bowel movement and urination. Yes, I would love to add yet another doctor and doctor bill to my already longer than necessary roster.
My new gynecologist’s response when I asked if there was a specific diet I could try was something to the effect of “we can’t recommend anything like that, really.”
Cutting out a laundry list of certain types of food is to help ease some of the symptoms, like excessive cramping and digestive issues. I have to say, it’s helped me a bit. As much as it kills me, I’ve cut way back on my dairy intake, avoid gluten as much as possible, have taken off processed foods from my grocery lists, and refined sugar products are a thing of my past. I’m also cutting out soy and wheat, which has been a bit cumbersome but completely doable. I have a bit more energy and less bloating, not as many headaches or constipation. However, sometimes it works, and sometimes everything I eat makes me feel sick to my stomach. Everything but vegetable broth. “It’s all a learning process though. I’ll figure it out!” is my daily mantra.
Honestly, with endometriosis, there is no definable cause, there is no cure, there is not perfect treatment for symptoms, and there isn’t even a set list of symptoms for each type. I could have Stage IV and feel absolutely nothing, or Stage I and feel all of the symptoms x 10000. It seems to me that endometriosis does what it damn well pleases.
Doctors don’t know what to tell me other than to take the Lupron shot. When I say no, they purse their lips and say they’ll look up names of specialists for me. They can’t tell me that any digestive issues I have are a result of implantation flair ups.
They can’t tell me what to do other than exercise and now take muscle relaxers. It feels as though I’m in this alone, have to find symptom reducers alone, find specialists alone, make every single decision about where to go and who to see and what to say about all of this alone.
This becomes a tiresome process, and I let it get the best of me some days. But as soon as I get up, I am even more determined to be loud and firm about what I want and who I need to talk to about it. And as soon as I find a specialist I am comfortable with, even if the money isn’t quite there yet, I will be on the next plane to talk with them.
***Hillary Umland is a flash fiction/short story writer and freelance editor living and working in Nebraska. She has been published in the July/August 2015 of Unbroken Journal. You can find out more about her endo-woes on howtodoonething.wordpress.com and find her on Twitter @hillaryumlaut. ***