Part 2: The Tests

A new doctor
I decided to see a family doctor first, considering my bad luck with OBGYNs. Since my primary care physician (PCP) had retired, I was going to see someone new and hoped a fresh mind would benefit me. I had been assigned to see a specific doctor who had taken on my PCP’s patients, but he was booked out, so I just took the next available appointment with whoever was open. That doctor was Dr. Dawson.

At my first appointment he walked in the room, sat down on the stool, put his head in his hands, and asked me to tell him the whole story; he was not like any other doctor I’d visited. He sat there and patiently listened, and since I finally had the full attention of a doctor I even mentioned things I didn’t think were related (I was tired, had no energy, felt flu-like, sex really hurt, a suspected ruptured cyst from my last period, etc.). I wanted this to sound like I had a real problem so he’d take me seriously. Dr. Dawson just listened and jotted down questions he wanted to ask later so he didn’t have to interrupt me.

When I was done he asked me about the notes he’d written, asked about my family history, and then told me what he thought was wrong. First he chastised me for not going to the ER when I thought a cyst ruptured (they apparently require monitoring as they can rupture blood vessels or cause infection from free fluid in the pelvis), and then he held up his fingers and counted off 3 things, “I think you’re allergic to your IUD, I think you have a mono or a similar virus, and I think you have a severe case of endometriosis.” He then laid out the game plan we’d follow and we set about checking off the first three action items: 1) blood work, 2) a little homework assignment, and 3) an ultrasound. We scheduled the lab work and he sent me home with these instructions: I was to use my fingers or dilators to poke around my vagina and cervix to see where it hurt and then call and report.

Blood work
The phlebotomist took vial after vial of blood because Dr. Dawson had ordered tests for EVERYTHING. While I wondered if they would leave any blood in my body for me, I appreciated his thoroughness. When my bloodwork came back a few days later most everything was normal or negative, except for a few minor issues. The biggest issue being I was positive for cytomegalovirus (CMV). CMV is a sister virus to mono with very similar symptoms, but is more aggressive and can reactivate itself throughout your life. In my case the virus had been active about 6 months prior (during my engagement) so I was likely feeling the residual effects which would eventually dissipate. We had one diagnosis down.

Homework assignment
I went home and did my homework. I pushed my dilator all the way in until it stopped and then I bumped it against my cervix and around the walls of my vagina. I couldn’t pinpoint if it hurt more on the right side or the left side, so when I called the office I left my report that it hurt sharply everywhere.

Ultrasound
The next step was an ultrasound to check for any abnormalities. Since endometriosis can’t be seen on any imaging, he expected this would come back negative, but wanted to rule out any other conditions. As we anticipated, the ultrasound report came back mostly normal, indicating no free fluid in my pelvis (they checked because of the scare of my suspected cyst rupture). However, the tech noted one small cyst and a slightly enlarged right ovary, but it wasn’t large enough to cause concern.

Transabdominal ultrasounds (on your stomach) require a full bladder for the best visibility of reproductive organs. Since it’s really hard to make it through an ultrasound when they’re running behind schedule, the tech did the whole exam really quickly so my bladder wouldn’t explode. I didn’t entirely trust that she’d done the scan correctly, but wasn’t anxious to go have another scan.

So long, IUD
After getting all the results, I was back at Dr. Dawson’s office. He did a physical exam and, just as he suspected, I was having an extreme inflammatory reaction to my copper IUD, so out it came. My entire vagina and cervix were inflamed, and he explained to me that it’s not the copper itself that kills the sperm, but that the copper makes me toxic to sperm. Copper particles mix with the fluid in the uterus and make that fluid inhospitable to sperm, but also cause an inflammatory response in the entire body. In my case the inflammation had gotten out of hand and was making me sick. Within 3 days of having the IUD out my energy levels were back up significantly.

Before the pelvic exam was over he checked to see where my painful spots were. It hurt the worst when he pressed on the top and on my left side. His conclusion: I likely had endometriosis on my left ovary and around my bladder. My bladder…. This reminded me of a symptom I hadn’t mentioned before—urinary frequency and urgency. He thought the endometriosis could be causing those symptoms, and that they should improve with treatment.

Depo shot
Once the IUD was gone we talked about my options for managing my symptoms. Dr. Dawson told me that we could try to manage the pain through hormones, but that he suspected a 40% chance I’d end up in surgery. When I asked about jumping straight to surgery he explained that surgeons generally require trying medication to manage symptoms before jumping under the knife.

Since I hated the pill he suggested I get the depo shot. The hormones were stronger and would deliver a continuous dose for 3 months. The idea was to stop my period so my body would have a break and the endometrial implants (if I had any) would stop growing. If my pain went away I’d stay on the shot until I was ready to try for a baby. At that point he’d induce ovulation with another medication since the depo shot has a tendency to linger in the body for upwards of 3 years after the last injection. He said if this didn’t offer relief in a month we’d pursue surgery.

Within 2 weeks I knew I hated the shot, but had no choice but to wait it out. It hadn’t reduced my pain and I had every possible side effect except for weight gain—headaches, worse acne, mood swings, depression, blood clots… but the worst was the bleeding. While the shot was supposed to stop my periods, it did the opposite and caused continual bleeding. It wasn’t painful or crampy, and usually just enough to use a panty liner, but occasionally enough to use a pad. I figured this would stop soon, but after 2 weeks I called Dr. Dawson back and said I wanted to head down the surgery route.

Nuvaring
Back in his office, Dr. Dawson gave me a sample of the Nuvaring. Since the depo shot was progesterone-based and the Nuvaring was estrogen-based, the ring should stop the bleeding and minimize my other side effects. I tried it out and was amazed! For a whole 24 hours I had no bleeding, but I unfortunately had to remove the ring by the next day. First, the average vagina is less than 3” long, but mine happens to be 6” long. That makes it very hard to insert a ring that is supposed to sit around the cervix, so it kept falling out and was pretty uncomfortable. Second, one look at me was all it took to realize I was actually allergic to the Nuvaring—hives covering my abdomen, sneezing, itchy and watery eyes, and runny nose. Sigh. I pulled it out and the hives went away, but the bleeding and other side effects returned.

CT scan
The last test we planned to run was a CT scan which I scheduled at the hospital. Like the ultrasound, we expected this test to come back negative, but Dr. Dawson felt it was necessary to rule out any other conditions.

The day of the scan I had to follow a specific preparatory diet: no food after noon, clear liquids until 3:00 and then no food or liquid after that. Once I got the hospital they started me on oral contrast, which I was pleasantly surprised to discover, tasted like a decent berry smoothie. The only difficulty in getting it down was drinking the sheer volume of liquid they expected over an hour and a half, and the fact that it cleans out your bowels! Getting it down was much easier knowing the bathroom was right around the corner and I was free to use it as much as I needed.

Just before the CT scan started, I was hooked up to an IV for intravenous contrast as well. This part was easily the worst since it made me feel dizzy, nauseated, and warm as I felt it moving through my circulatory system. It was not a comfortable feeling once the warmth reached my bladder area and I was certain I had peed everywhere (I didn’t). Fortunately the scan was over quickly, the contrast was stopped, and I was able to get out of the hospital quickly.

My results were a little surprising. Most organs were normal or grossly normal, but my lymph nodes were swollen, my stomach was moderately distended, I had moderate stool evident throughout my colon (despite 3 bowel movements that day), and I had an unidentified fluid in my pelvis, but there were no obstructions or other abnormalities. I was glad this had picked up something since I was still feeling my ultrasound wasn’t done correctly, but I was a little upset that nothing could be seen on my reproductive organs. Again, this was expected since endometriosis is only visible via laparoscope.

Pathology and a pregnancy test
The last test we ordered was unexpected. One night I woke up in severe pain that gradually intensified. I went to the bathroom since I was worried about throwing up or waking my husband up. Over the course of an hour the cramps in my abdomen went from a 6 to a 9 (despite 800 mg of ibuprofen), and I laid on the floor, sat on the toilet, stood up trying to find any position that was comfortable. After an hour and a half I suddenly felt an urge to bear down and something large fell out of my body into the toilet. Immediately the pain subsided. Upon closer inspection I got sick to my stomach as I saw what appeared to be a bloody piece of chicken skin (about the size of a half dollar) surrounded by large blood clots.

My initial thought was that I had been pregnant, didn’t know it, had miscarried, and just experienced labor pains. I scooped it out of the toilet with a plastic spoon, saved it in a bag, and placed it in the fridge for the rest of the night. They got me in to see Dr. Dawson immediately the next morning. He thought I had either miscarried (and assured me the depo shot would not have caused this), or that I had passed a decidual cast (more on that in a minute). In order to get answers he sent my tissue off for pathology and sent me for a blood test to rule out or confirm a pregnancy.

At the hospital (which is connected to my doctor’s office) the woman checking me in saw that I was there for a pregnancy test and congratulated me. I told her they thought I had miscarried. “Oh, well sometimes it can look like a miscarriage, but it turns out to be fine. When did you start having symptoms?” I told her that I’d passed the tissue last night. “Oh… I’m so sorry.” I said I didn’t realize that I could’ve been pregnant until last night. “Oh… it was a surprise then?” To which I told her we hadn’t been trying. The conversation was getting more awkward by the second. I wasn’t emotional, but wasn’t entirely sure how I should feel. She finished up my paperwork quickly (much to my relief) and I went to the lab.

Less than 2 hours later I had my blood work back—it was negative and I hadn’t been pregnant. Phew. I didn’t know how to cope with losing a baby I didn’t know existed, so I was glad I didn’t have to!

My pathology report on the tissue came back a few days after that and indicated no sign of malignancy or disease, just normal ovarian tissue, or in other words, a decidual cast. This is when the uterus (generally, painfully) contracts and expels its entire lining at once instead of breaking down over the course of several days (like in a normal period). Progesterone mimics the symptoms of pregnancy so the uterine lining thickens, but when the body realizes there is no baby, the lining suddenly sheds. This is a rare side effect of the depo shot (once again, I got all the symptoms).

Finding a surgeon
Now I had several reports ready to take to a surgeon. Dr. Dawson had recently moved down to Utah county from Ogden and said he had a specialist in mind in Ogden, but to spare me a long drive, got a recommendation for an OBGYN in Orem instead.

I made the appointment, but felt uneasy with his recommendation, despite reading overwhelmingly positive reviews of him online (and hearing good things about him from friends). I spent several days researching various surgical techniques for treating endometriosis and learned that the most effective method was excision rather than ablation. I compiled a list of questions to ask this doctor (based on my research) and waited for my appointment which was still a few weeks out.

While doing my research, I learned from a friend about a surgeon in Ogden who did excision surgery. This turned out to be a major blessing—not only was this doctor in Utah, but he’s the only surgeon trained in excision in this part of the United States! Immediately after I heard his name I instinctively knew he was the doctor I needed to see. I checked his website and found an answer to every single question I had written down, and I felt total peace and confidence in him. My nerves were calmed when I learned that he almost exclusively treats endometriosis and has extensive training in excising the disease around vital organs (so if I had bowel or bladder involvement, he’d be able to treat it without calling in a specialist).

After a quick call to Dr. Dawson I discovered this guy was exactly who he wanted to send me to, but thought I didn’t want to travel 2 hours north. I immediately scheduled an appointment, and was amazed he had an opening a week and a half later (which was sooner than the other Orem surgeon could see me). The stars were aligning and I couldn’t wait to see Dr. Arrington in Ogden!