On at least three separate occasions over the past few years, I have asked doctors if the pain that I get through my left side and lower back could be kidney stones. Kidney stones can be a direct cause of hyperparathyroidism, and given how far back this pain has been going on and how long my blood calcium had been high (six years pre-surgery), it made sense to me. My mother also had them when she was only a few years older than me, and having a parent who has experienced kidney stones means the child has a higher chance of experiencing them his or herself.
After three years of being told I have PCOS, that the pain I felt was likely from ovarian cysts, and that I should “take a couple ibuprofen,” I was growing weary of the “wait and watch” approach my PCP had enacted. My six weeks in Ireland between December and January was marred by several bouts of severe pain, including one that landed me in the ER.
So with the pain becoming worse and more frequent and lasting significantly longer than it ever had, I finally made an appointment with a gynecologist. This was at the beginning of April. The gyno told me there was a good chance that I had endometriosis and that I would suffer for the rest of my life. To be sure, he wanted to do a laparoscopy, which is the only way to confirm the presence of endometriomas. His nurse, after he left the room, decided to relay her story to me in which she had surgery after surgery after surgery, each one making the symptoms worse, until she, “finally just had a hysterectomy to get it over with.”
I shouldn’t have to tell you that I went home utterly devastated. I spent the weekend in a messy heap of darkness. And I mean that. I mean I reached a point at which after three years of this “mysterious” side pain, and over a year of all this shit with blood tests and scans and doctor after doctor, I believed I would never be healthy again, that there was nothing to look forward to beyond this point in my life if at twenty-six years old I felt so horrible all the time and there was no end to that in sight. And I cried. Like, really cried. A lot. For the first time in years.
The following Monday, after the emotional takeover eased up, and after much contemplation, I decided I did not buy the doctor’s diagnosis, and that I was not going to undergo the suggested procedure. I don’t have a degree in medicine, but I know my body well, and this didn’t feel right. I had acupuncture for the first time in the hopes of helping with the pain. That Tuesday, I also had a followup ultrasound to investigate the ovarian cyst on my left ovary, to see if it had grown and could possibly be adding to the pain.
Instead of the usual ultrasound techs who quickly look at what they are supposed to and send you off, I had one who investigated a little further. She found a stone in the ureter, and though she did not have an order to do a scan of my kidneys, she did one anyway and found, in addition to the stone in the ureter, four other stones, two in each kidney. Three of the four measured over a centimeter, and my left kidney showed signs of renal colic and a backup of fluids.
As in, not ovarian cysts.
As in, not endometriosis.
As in the very thing that I had asked about several times over the course of several years, INCLUDING during a trip to the emergency room in January 2007, when I woke at 6AM with the worst pain I had ever felt tearing through my right side (had actually forgotten all about this until I was told I have stones in both kidneys). This was before I even knew I had hyperparathyroidism. By the time I was seen, the pain had eased and no scans were ever done because it was never even considered a possibility.
Now, I started this blog to chronicle my writing path. I don’t like sharing too many personal details from my life, and so you’ll probably notice that my friends and family tend to be, for the most part, kept out of it. But the health stuff I’ve always wanted to share 1) as an outlet, and 2) because I think people sometimes need the real-life experience as opposed to the WebMD explanation. And my experience is exactly why we must be in tune with our own bodies and be our own advocates. Not only did I have to be the one to push for my PTH (parathyroid hormone) levels to be checked last year, but had I not gone to see someone without a referral from my PCP and had this followup ultrasound, who’s to say how long I would have been in pain while we continued with the “wait and watch” approach?
When the gyno called a week later to apologize for his assistant’s over-share re: endometriosis, I asked if he had been told yet about the results. He hadn’t. He looked at the scans while I was on the phone with him and quite literally said, “Whoa” and “You know they say that’s the one pain worse than child birth?” I can’t do a comparison, but, um, yeah.
Everyone seems surprised, too, that I have them at such a young age. But again, I had hyperparathyroidism. My calcium was elevated for at least six years that we know of, and I wasn’t told about it until last year. It shouldn’t be a shocker that someone who had a condition that causes kidney stones has kidney stones! At some point, with my constant reminder of, “Hey, so there’s this pain in my side?” someone should have checked for kidney stones–it’s the easiest, most logical answer. The good thing is that because I’ve already had the parathyroidectomy, the condition is corrected and this should hopefully not be a recurring problem once fixed.
A friend who suffers with kidney stones passed along a home remedy that’s meant to help stones pass, or at least ease up on the pain. It’s absolutely horrifying, but since I started doing it, I haven’t taken any pain meds, and I’ve barely needed the comfort of my heating pad to get to sleep. A shot of apple cider vinegar (organic!), a shot of extra virgin olive oil, a good dose of lemon juice, followed by a TON of water, twice a day. I spend about 45 minutes nauseous and cursing the gods of all religions, but it’s worth it.
Unfortunate though it is that I now I have to be referred out to yet another doctor (I have an entourage!), I am absolutely thrilled to finally have an answer. And one that is so very, very fixable! I’d also love to get this done and over with as soon as possible so that I can enjoy my summer and perhaps enjoy a visit from a certain Irish fellow.
“Take a couple ibuprofen.” Puh-lease.