Underinsured, Underdiagnosed, and Anonymous: Endometriosis Part 3

I am continuing to write this anonymously because I continue to fear the social repercussions and potential backlash of publicly revealing my real name in association with my endometriosis and other health conditions. I am uninsured and told by many, uninsurable.

Marriage and Endometriosis

We eloped without much fanfare at the Office of Civil Marriages in the spring, and over-nighted a certified copy of our marriage certificate to my newly-wed husband’s H.R. Department ASAP. A month later, we received our new medical cards, and my husband’s primary physician gave me referrals to a network-approved gynecology specialist and internist. The gynecologist ordered another abdominal ultrasound, blood draw, urine sample, and Pap smear to check for viral, bacterial, and/or urinary tract infections, as well as to rule out other possible conditions like kidney stones or gallstones. The internal medicine specialist referred me to a gastroenterology-endoscopy doctor to get my spleen, colon, appendix, and liver more thoroughly checked out. I also remember asking both of them about going off the pill back then, but each one had advised me to stay on it, at least, until my initial lab results were in. It was definitely no honeymoon as the poking and prodding officially commenced once more.

The Pain of Endometriosis

My upper-left abdomen was tender to the touch below my ribcage, and my lower-left abdominal pain had grown much more intense, now radiating from my stomach to my backside in sharp, rapid, debilitating jabs. It felt like my organs had dropped, and my insides were trying to force their way out of me. It stung to urinate, hurt to have a bowel movement, my urine was very cloudy, and there was a lot of (too much) blood in my stool. The burning sensation in my bladder and the rigidness of my muscles were limiting my mobility, aggravated lower quadrant soreness and spasms were impairing my sleep, and a new found fear of vomiting or otherwise using the restroom was inhibiting my appetite. I was faint, weary, and weak from excess blood loss, malnutrition, insomnia, distress, and delayed treatment. And, I was just about to begin another taxing hodgepodge of could-be prognoses throughout a long (almost too long) diagnostic process of elimination.

The gyno’ reported that I had crystals but no stones in my urine, and prescribed me antibiotics for a bladder infection (one problem down, many more to go). The ultrasound image still showed a small mass and fibrous tissue, but they did not appear to be ovarian or polycystic in nature. Likewise, although my iron levels were down, my lab panel showed no sign of kidney or gallbladder abnormality or dysfunction. And, there did not seem to be any cervical or vaginal lesions, viral or bacterial. They said that a small uterus might explain my short, light, and irregular periods during adolescence (previously a non-issue to me), as well as an increased susceptibility to endometriosis, and a decreased success rate for surgical assessment or treatment thereof. So, laparoscopy was ruled out as a viable diagnostic test or care option for endo’ altogether, rendering my prior endometrial diagnosis unconfirmed (but still, ironically considered a pre-existing condition), and my current status was again in question. It was, however, recommended that I ask the gastroenterologist/endoscopy specialist about the possibility of any additional bowel, thyroid, and/or pancreatic involvement, though.

More Doctors

By the first time that I saw the GI/endoscopy doctor who the internist had referred me to, a few weeks later, my bladder infection had cleared up and my urine was back to normal. But, I was now passing mucus, tissue, and blood clumps, without bowel movements, in addition to suffering from constant rectal bleeding (without any bowel activity). I could now also feel a throbbing lump bulging against my insides from somewhere near my perineal area, making it extremely difficult for me to sit down (when it had already become problematic for me to lay down on my stomach or even to lie on my back). The gastro-endoscopy physician told me that I had injured my spleen in the slip-and-fall accident, and that it would probably take another month or so for it to fully heal on its own, thus explaining the tenderness that I had felt under my ribs. The doctor also suspected that I had colitis (inflammation of the large intestines) with internal prolapsed piles, and wrote me a prescription for sulfa antibiotics, hydrocodone painkillers, and corticosteroids, for at-home treatment. The second course of antibiotics made me feel a little bit better, and the painkillers helped me to sleep some, but the corticosteroids made the small lump inside me swell into a larger bump ready to burst through my very skin. No, I didn’t have piles or colitis, either.

Five weeks and a bunch of different tests later, I also didn’t have appendicitis, pancreatitis, and hepatitis, cirrhosis of the liver, thyroid disease, or diabetes, among other things. I still didn’t have gallstones or kidney stones (they double-checked), but I was still on oral contraceptives (and hating it) as continued to be advised for no given reason. I had been married for four months; the summer was half-over and we were spending hundreds of dollars per month in medical premium deductions, on top of hundreds more in mounting insurance co-pays, and other related expenses to no avail (needless to say, our savings and hopes were dwindling quickly). They didn’t want to do a colonoscopy on me because I was way under the age of fifty, had no recorded family history of colon polyps, colonic ulcers, diverticulosis, or diverticulitis, and nobody really expected to find anything anyways. But, they too had run out of other tests to perform, even though I wasn’t getting any better under their watch. A preliminary colonoscopy and biopsy, a repeat procedure, and multiple follow-up biopsies, however, ‘finally’ and shockingly confirmed that I had an adenocarcinoma tumor in my colon. I had colon cancer? …I had colon cancer…

To Be Continued