A Word of Caution to Women with Chronic Kidney Stones and Their Urologists

I suffer from a genetic kidney abnormality called cystinuria and can produce ten or twenty kidney stones in a month’s time. About a month before I was due to leave Japan I saw my urologist for what I thought was another stone. Same pain, same place. Nothing new. After passing so many stones and having so many procedures in a short amount of time he had the utmost faith in my self diagnosis even though the CT scan showed nothing. He said I might have passed a stone and was feeling residual pain. I was also nauseous and felt like I had kidney blockage. It was all so familiar.

One week before we were scheduled to fly back home I had intense pain. I waited as long as I could but the pain was getting close to 10/10 on my left side. I just knew it was a stone and was desperate for pain relief, I went to the ER.

When I arrived I gave a urine sample and it was positive for blood. Not too much – the norm for those with stones. The CT scan came back normal with no large stones that would be causing me main in my lower ureter, bladder or urethra. Next I was sent for an ultrasound where they found a 15ml hemorrhagic ovarian cyst on the left and they said it was causing my pain for sure. They said these types of cysts normally reabsorb into the body and usually returns during ovulation. They are very common but they wanted me to follow up with a family practice doc.

I saw her two days later. Ironically right before I was seen I ran into my urologist in the parking lot and basically said my goodbyes to him knowing I would be leaving in less than a week. I ran back in and was called back.

I went to the lab and gave them a blood sample. When I returned they did a repeat ultrasound on my and saw that my cyst had grown to 30ml. Afraid it would burst and because of the increasing pain the called the on-call ObGyn doc to schedule surgery for me the next morning so I could leave the island on time.

I mentioned how I had been spotting over the past month or so. With the Mirena IUD, I hadn’t had a period in years but maybe twice a year for the first two years I would have spotting for a week or two.

My blood work came back in before I left and guess what? I was pregnant! I was about 2 months pregnant according to my hormone levels. Now the bleeding made sense. I always bled during my first trimester to the point where I thought I was having a miscarriage each time. That was my normal. We were all shocked because I had an IUD in place – one reason my urologist didn’t think twice about my nausea. I had been nauseous before but it was always due to kidney blockages and he knew about the IUD. They were still going to go ahead with the surgery and before I left the office that day, my IUD was removed.

The next morning I was prepped for surgery. Right before they wheeled me into the OR, while I was speaking to my doc, I felt a new twinge of pain on the right side. It was over quickly but since she was there I asked if she could check out that side too. She said she was planning to anyway.

When I woke up my ObGyn had pictures in hand of the laparoscopic procedure. One picture showed this gargantuan ovarian cyst and the deflated after shot. The big shocker came when she said that pregnancy and consequential right-sided pain was an ectopic pregnancy in my right fallopian tube!! She couldn’t save the tube because it was demolished. The baby was so big it was about to burst. It was not caught on previous ultrasounds, possibly due to an inexperienced technician, as they did check both sides to compare them.

The problem with kidney stones in women is that we have a lot going on mid-ureter on down. We sometimes deal with ovarian cysts, ectopic pregnancies, bladder infections, UTIs – hell even ovarian cancer is a possibility. My point is ovarian cysts and ectopic pregnancies feel exactly like everyday stone pain. My pain was in my groin and a bit centered as if a stone was stuck in my bladder and going in and out of the edge of my urethra or as if it was getting ready to drop into my bladder.

Women with kidney stones, and even awesomely god-like urologists, can become a bit complacent with chronic kidney pain sufferers. We know our bodies and condition quite well so when we complain about mystery stone pain after having your 4th ureteroscopic stone removal and passing 100 stones in the past 6 months, one can safely assume the pain and nausea is coming from an imminent stone passage or from a recently passed stone.

What I’ve taken away from that experience was:

1. Stop assuming all stone pain is really stone pain, or at least assume that it is, but be open minded for other possibilities and mention to your doctor about previous conditions that presented as stone pain is applicable.

2. I should have told my doc about the cyst that day in the parking lot so he could learn from the experience as well. Even though we wouldn’t leave the island for another week because of my med-hold, I never called him to tell him. I was in a load of pain post-operatively and didn’t think about it. He’s a military doc and I don’t think he saw too many women with stones, especially ones with stones, ovarian cysts and ectopic pregnancies at the same time. I mean, what are the odds? I should have told him and I’m still kicking myself to this day.

One of the side effects of an IUD is an increased risk of ectopic pregnancy. Ovarian cysts also become more pronounced. I knew that. Women are warned about the potential side effects before getting the IUD. Again we become complacent, especially after many years of having an IUD in place with no side effects to speak of.

Nausea doesn’t always accompany kidney stones but presents when the kidney is blocked by a stone or hydronephrosis is present due to a stone-related (pre or post op) infection. Any time a female with chronic kidney stones presents to the urologist with nausea, a pregnancy test should be given. Undiagnosed ectopic pregnancies that lead to a blown fallopian tube can cause death although some babies stop growing early on and are reabsorbed into the body. Also, if no stone is found and the patient doesn’t have a history of ovarian cysts, it might be good to send the patient back to the general practitioner to have an ultrasound done just so the patient can understand her pain a little better in the future.