Sunday, May 22, 2011

The Treatment Diaries: Dr. RE & a diagnostic cycle (February-May 2000)

While waiting for my RE appointment on Feb. 24, 2000, I was trying to track down the results of dh's SA. He'd (finally) taken his sample to a local lab on Jan. 12th, & while I knew my family dr's office had the results as of Jan. 20th, we still didn't know what they were. I called his office again on Feb. 10th (four weeks after the test, three weeks after I knew the dr had the results and two weeks before my RE appointment) & was told the dr STILL hadn't reviewed them. The receptionist did tell me that the count was low and motility only 50%, when 70-100% was what the drs wanted to see. We went to the RE's office still in the dark.

Dr. RE's office was in an office tower a couple of subway stops north of where we worked. In my journal, I noted "35ish? Well spoken, seems to know his stuff. Not board certified yet, but trained in U.S." He had only recently set up shop in our city, which is why our wait to see him was (relatively) short; I later heard from other patients that the waiting lists at other local fertility drs & clinics were anywhere from six weeks to six months.

Dr. RE had various records & test results that Dr. Ob-gyn had faxed to him, including my temp charts. Our chat was a maddening mix of encouragement and discouragement. I was glad he seemed to be being honest with us, but also thinking he didn't have to be THAT honest, lol. My notes from our visit outlined some of the issues:

  • While Dr. RE had received my Pap results & endometrial biopsy results, he didn't have my HSG results or any of my bloodwork results (or dh's SA results).
  • My last Pap test in October had discovered some abnormal cells. !!! This was news to me. I was stunned. Why hadn't I been told before this?
  • While Dr. Ob-gyn had pronounced the results of my endometrial biopsy as normal, Dr. RE said the results pointed to a luteal phase defect.
  • My temp charts showed that "if you're ovulating at all, you're not doing it very well." He said if I was ovulating, it was happening "too late." This was my first indication of one of my main gripes with Dr. RE -- his seeming obsession with having me ovulate on day 14. From everything I had read, only a small percentage of women ovulate on day 14, & I knew I was not one of them. My cycles were generally around 35 days, which I didn't think was abnormal, but not according to Dr. RE, who kept talking about 28 day cycles as the gold standard.
  • Contrary to what Dr. Ob-gyn & the radiologist had told me when it was discovered, my bicorunate uterus most definitely COULD be a problem in sustaining a future pregnancy. Dr. RE told me there was a 30% loss rate associated with these kinds of uterine abnomalities. At the same time, he agreed with Dr. Ob-gyn that he wouldn't recommend surgery to repair it. "It's there -- it may or may not be a problem -- there's not a lot we can do about it," he said.
  • My age (39) was an obvious negative, which I already had figured out. I got the "after age 37, there is a dramatic decline in fertility" talk. Success rates are not too good for women in their 40s, even not including a bicornate uterus. "Getting pregnant is one thing, carrying to term is another," he said.

All this said, Dr. RE recommended starting with a monitored cycle to see just what my body was doing. We talked a bit about the various kinds of treatment & the costs involved. Dr. RE said he recommended three cycles of any given kind of treatment. "Set a limit up front," he encouraged us.

*** *** ***

I went back to the office -- and called Dr. Ob-gyn's office. I'd been told they would call me if there was anything out of the normal to report from my Pap back in October. Why hadn't I been called about my abnormal results???

The secretary agreed that I should have been called. She said in these cases, the Pap was usually followed up with another six months later, & made me an appointment for April 14th.

*** *** ***

Friday, April 1st, I started spotting. I knew AF was imminent, so I called Dr. RE's office. What next? A friendly young woman named V. told me we would start cycle monitoring on Monday, day 3. First, she told me to report to a radiology clinic near Dr. RE's office between 7 & 8 a.m. for an ultrasound, then bring the results to the office, where I would have some bloodwork done, and possibly a short chat with the dr.

Dh & I normally get to the office at 8 a.m., rising at 5 & leaving the house by 6:30. We checked the train schedules & found that if we took the earliest train, shortly after 6 a.m. (gulp), then the subway, we could get to the radiology clinic just before it opened at 7. We set the alarm clock for the ungodly hour of 4 a.m.

We got to the radiology clinic about 10 minutes before 7. The door was locked, but there was already a small group of women in the hallway. Dh was the lone male, as he usually was in the months that followed. Nobody spoke. Just before 7, a middle-aged woman got off the elevator, & opened the door with a key. Everyone seemed to know the drill, except me. I think I had to ask someone what to do. We signed our names in a binder on the front desk, picked up a hospital gown & went to a series of cubicles at the back to change. (Dh remained in the main reception area.) It was first come, first serve, and I soon got quite adept at quickly shedding my street clothes, changing into my gown & getting into line.

Sometimes, we'd chat among ourselves, sometimes we'd just stand alone with our thoughts. Dr. RE was one of several independent REs using this clinic's ultrasound services, and many of the women had been to other REs in the past. They compared REs, dosages & protocols. Encouragingly, many of them said Dr. RE was the best they'd ever been to.

Some of the women had quit their jobs or downscaled to part-time employment to focus on getting pregnant. I didn't feel quite so sorry for myself about my commute when I heard that one woman had driven in that morning from Niagara Falls, which was about two hours in good traffic. I also heard a woman in Dr. RE's waiting room who had come from Sudbury, about six hours to the north. She did her regular monitoring there & came to see Dr. RE at critical points in her cycle.

When it was finally my turn, I walked uncertainly into the room. The grey-haired u/s tech handed me a clipboard & a pencil, and told me to remove my underwear & get on the table, feet in the stirrups. She put a condom on the u/s wand (!), put it inside me, and started dictating numbers (follicle measurements) for me to write down as I lay there, trying to see what she was seeing on the screen. (She often had difficulty seeing what was on my left side.) I was in the room for all of about five minutes. When she was done, I wiped myself off, put my underwear back on & left the room. She told me to take the piece of paper back to the RE. It was like being on an assembly line.

I got dressed again & met dh in the reception area. I got into the habit of copying down the number of follicles & the range of measurements for my own record before we headed out to Dr. RE's office, several blocks away. V. took my blood (& dh's too, I think?) & said she would call me later with the results, which she did. Everything was looking normal, she said. I was to come back on Friday, day 7 -- same routine. I scurried into the office, late, hoping nobody would notice.

I called Dr. Ob-gyn & asked that the missing test results be sent to Dr. RE.

Back at the u/s clinic Friday morning (day 7), & again on Monday (day 10). Both days, the tech asked me if I was on clomid or hormones. "No," I said. "Perhaps that's the problem," she said. Problem??

Dr. RE, on day 10, told me I wasn't doing very well, that he expected to see some follicles by now. He had finally got some SA results for dh: at 15 million, his count was on the low side, as was the motility. He mentioned he'd like to do an u/s on me himself to determine whether I truly did have a bicornuate uterus (but never mentioned it again on subsequent visits).

On day 13, he grudgingly admitted that "you could be having a long cycle & ovulate on day 19 or 21" (which was, in fact, the norm for me). Back on day 17, he seemed surprised that I looked ready to ovulate after all. The next day, the u/s tech told me, "You must have ovulated; the big follicle I was tracking isn't there anymore." Dr. RE confirmed: "You ovulated!" He said my estrogen levels were on the low side, but he felt I would respond well to treatment. He told me to come back in a week for bloodwork only (to measure my progesterone levels).

By day 31, my temperature had dropped & I had started spotting. I went in for my scheduled pregnancy test on day 32 (May 9th). I knew I wasn't pregnant, but I was eager to get on to the next cycle.

Dr. RE discussed the next steps with me on the phone. He said I had had a "normal" cycle & "whatever you are willing to go ahead with." I said we were not comfortable with proceeding straight to IVF (the cost factor in particular was daunting). Dr. RE told us there was statistically little difference between an IUI cycle with clomid and with injectables for 40-something women, although he felt Clomid sometimes had a detrimental effect on the uterine lining, & he also felt the side effects were sometimes worse than with injectables.

He suggested we come in the next day for an ultrasound and bloodwork, & he could provide us with a prescription for Clomid or injectables, depending on what we had decided to do.

*** *** ***

In the middle of my monitored cycle, on April 18th, I was back at Dr. Ob-gyn's to have a repeat Pap exam -- actually a colposcopy, which was a little more involved, but still nothing too bad. He apologized that the test results had slipped through the cracks, for whatever reason. He reassured me that what I had was "mild dysplasia -- this is NOT cancer." He went on to say that this was the beauty of the Pap test -- it caught little problems before they turned into big problems.

It was May 3rd before I discussed the results with Dr. Ob-gyn on the phone. He said there was a very tiny area that was showing some very low-grade irregular cells -- "if it was any lower, we wouldn't be having this conversation." He said it was nothing that should preclude me from getting pregnant, or trying to get pregnant. He told me that sometimes, these things reversed themselves without intervention, & asked me to come back in another six months for another check.

I remembered that one of my girlfriends who also went to Dr. Ob-gyn had gone through something similar, so I called her up. She said he'd been monitoring her for more than five years (!) & that he'd actually noted some recent improvement. A friend of hers, also a patient of Dr. Ob-gyn's, had actually had a procedure to laser off the abnormal tissue, but had pronounced it as "nothing" & had been fine since then. That made me feel a little better.

*** *** ***

Dh & I had signed up for an Alpha course at our church that spring, and on May 4, I wrote that the subject had been "How & why to read the Bible." Both the speaker in the video and my small group leader said that often, at critical times, certain passages in the Bible would leap off the page and "speak" to you. We all flipped through the Bible to see what we came up with -- and while my first venture landed on the story of Daniel, a subsequent dive into the book came up with the story of Elizabeth -- old, barren Elizabeth, Mary's cousin, who conceived a baby who became John the Baptist.

I was thrilled. I wrote in my journal: "Maybe not this cycle -- maybe yes -- but I took hope from that little "coincidence" -- I WILL get pregnant again. I WILL have another child someday."

2 comments:

  1. These two entries have brought back a lot of the frustration of the early IF diagnosis days -- DH's refusal to immediately go out and get an SA (LOL), running to Walgreens every other day to get Robitussin or green tea supplements, misplaced medical records, late lab results, and feeling that I was being treated very shabbily indeed. In retrospect I think 2005 (diagnosis/IUI year) was far more frustrating than those that followed. And I did quit my job, partly to focus on getting PG!

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