One year ago today, I was in a hotel room in Omaha recovering from my surgery with Dr. Hil.gers. I was 4 days post-op, in a considerable amount of pain, still undergoing the ovarian ultrasound series and all alone, missing Mr. Mike who had flown back home to be with the boys. I was miserable on so many levels, but was buoyed by hope that this crazy trip was going to be worth it in the end. The ultrasound series confirmed a
LUF and I eagerly looked forward to my follow-up appt with Dr. H later that afternoon where he would tell me he had found the culprit for our 10 years of infertility and a Rx for the treatment.
A year has gone by and I have found anything but peace after my experience in Omaha. Specifically, after everything that was done to me in Omaha, he declared that he could find no clear reason for our infertility (an utterly frustrating and frankly devastating fact for me to grapple with). That's not his fault, but he talked me into participating in two experimental studies: low-dose cortisol and T3 (thyroid) therapy. Both drugs, he claimed, have evidence of being "the ticket" for couples experiencing unexplained IF. After about 14 months on T3 and 7 months on cortisol, however, I asked to withdraw from both studies because of the expense involved and the weight gain I experienced. I didn't notice any improvement/difference at all with the drugs.
But what I really wasn't at peace with was the fact that I had a documented anovulatory cycle that never got addressed. I
never ovulated while I was out there. His response of "well, that's probably just a fluke" has just not been sitting well with me these past 12 months. When I talked to his nurses about it afterward, they just gave me their canned response to trust him.
Sorry, but I need a better answer than that.
I didn't spend all that additional money and time away from my family last November for this. It was after this last conversation with Dr. Hil.gers' nurses in September--with whom btw I was very nice--when I withdrew from the cortisol study that
he suggested a phone consult. Frankly, I was a little shocked and just sort of want to be done with all this but, sure...I scheduled it anyhow. In the mean time, I was doing a little more research of my own online, specifically regarding low-dose naltrex.one (LDN).
And so, I had my phone consultation with him two weeks ago. I've been chewing on what we talked about ever since. It was a 35-minute conversation in which I addressed three areas of concern:
1) I wanted to know generally what our "prognosis" is and where, if at all, we go from here. Has he reached the bottom of the barrel of options?2) I wanted clarification on the results of the ultrasound series and why he didn't think LUF was a significant finding worth pursuing a little more.3) what is the criteria for prescribing LDN? It appears that it's been used (by him and others) for the last 25 years, particularly in cases of infertility with unexplained etiology. Re: 1) he mostly talked in generalities about what they have the ability to test for and treat. I've been tested and treated for just about everything he even remotely suspects. He was concerned about the tail-end spotting I continue to have despite the biopsies & cultures he ran last year (which came back negative) and the 21-day course of antibiotics both Mr. Mike and I took in December. He said he has a hunch that the tail-end spotting is a response to some kind of sub-clinical infection--but he doesn't know what--and
that is ultimately responsible for our infertility. He encouraged me to not look at our IF journey as the 11-year journey it's been but rather just the 12 months it's been since he saw me. I get what he's saying, but he forgets that I've been a NaPro patient for 9 years.
Re: 2), he was quick to deny that he said any such thing. He reiterated that LUF is a very significant finding, but only for the cycle in which it occurs. He has no way of knowing how often it's happening but suspects it's not every cycle for me. He mentioned something about being under stress while I was out here and he's not surprised that I failed to ovulate. He talked mostly about how far advanced his ultrasound technology is and how well trained all his techs are. I was going to ask him about getting a second series done locally, but honestly--I let it drop. I know what his answer would have been. I'm going to be seeing Dr. S in a few weeks and if I get a second opinion/new series done, it's probably going to be through his office anyhow.
Re: 3) I told him I had been doing some of my own research on LDN and pointed out that Dr. Phil Bo.yle in Ireland has had remarkable success with it, especially in cases with endometriosis, tail-end spotting, PMS and other fertility related ailments. He responded that he had been Rx'ing it longer than Phil Bo.yle (for 25 years or something like that) but that he has fails to be as charmed by it as Dr. Boy.le seems to be. BUT--he was willing to Rx it for me and give it a shot. He mentioned that one thing that makes me a reasonable candidate for it is the evidence of a sub-clinical infection (tail-end spotting) and seeing as LDN boosts the immune response, it could assist the Omega-3's I'm already taking in fighting off any subtle infection that might be going undetected. It's a long shot, I know. But I adore Phil Bo.yle and if he thinks it's worth a shot for those who have unexplained IF, I'm willing to give it a try.
In all, I guess I'm satisfied by what I heard. Not surprised, not overjoyed, not completely disappointed. He answered my questions in a way I expected him to. I told Mr. Mike,
"leave it to ME to be the kind of patient that stumps even Dr. Hil.gers!" I think I can safely say that he has exhausted what he can do for me though because I sensed some discomfort on the other end of the line. I'm an enigma. I don't know if I've quite reached the "finally-able-to-close-this-chapter-of-my-life" point yet--given the fact that I campaigned for the LDN and he's willing to Rx it. I'll give the LDN a chance for a few months and just continue to pray for God to guide us.
As a final interesting side note...While I was on the phone with him I asked for a Rx for Diflucan for a yeast infection I was having...probably the result of the antibiotics I was taking for that tick bite last month. I told him how highly susceptible I seem to be with getting yeast infections, especially while on antibx. That triggered an idea for him and he shuffled through some paperwork to find the culture and biopsy done on my uterus last year. He said there was evidence of yeast both there and on the Pap he did in the office the day before surgery. He is speculating that perhaps I have a chronic problem with yeast (perhaps a culprit for that sub-clinical infection he suspects??) and Rx'ed a heavier 3-day course of Diflucan in hopes of knocking it out completely.
So I'm now reading the
The Yeast Connection by William Crook. And someone shoot me now please because I've also been reading Dr. Toth's book
Fertile vs. Infertile for the past year and was looking up info on an office visit with him in NYC.