Thursday, August 13, 2009

Part One- something wrong.

In November 2007, five days after our second anniversary, our house burnt down. A year later, the new framing and siding had gone up and we were assured that we would be able to move in come spring time. So, on our third anniversary, we symbolically threw away the rest of my birth control pills and looked towards the future of getting back home, starting a family and getting on with our lives. My obgyn warned that it could take up to three months for my cycle to become regular, so while I was disappointed at the negative hpts; I wasn’t worried that my period hadn’t come.

A little over three months later, though, and still without a period, I called her to express a bit of concern. Over the phone, she asked if I was sure I wasn’t pregnant (I was sure) and called in a prescription for Provera. Meanwhile, I had done some research online about the causes/treatments for amenorrhea (okay, extensive research). From this, I knew that Provera was basically synthetic progesterone which causes one to shed their uterine lining (producing a period) assuming that enough estrogen was present to have built the lining up. I had also read horror stories about the side effects of Provera and was uncomfortable with introducing more synthetic hormones into my body when the whole point was to get my body functioning normally. I researched the dangers of not getting your period which are related to low estrogen—basically osteoporosis and heart disease. From what I understood these become problematic over long periods of time without menses so a few months didn’t mean my body was in major danger. I speculated that maybe the reason I hadn’t gotten my period was the excessive stress from having our house burn down and having to deal with the nightmare of our insurance claim, moving around etc. I did more yoga, went to bed early, tried to be good to myself, I even tried five weeks of acupuncture (yes, acupuncture and I HATE needles!!!). We eat mostly organic foods but I switched to eating only organic for a few weeks.

In the middle of May my father passed away.
It had now been seven months without a period.
I felt some silent clock ticking.
I started the Provera.

I didn’t have any of the awful side effects I had read about like raging mood swings, terrible cramping, heavy bleeding… but I also didn’t get my period. I called my obgyn who said to wait another few days that it could take up to a week after stopping the Provera. I waited- even while knowing myself enough to know nothing was coming. A few days later I called the doctor back again. She asked if I was pregnant. No. She said, “Well, we’ll put you back on birth control pills for a month.” When I questioned that she said, “Well we can try straight estrogen and then the Provera again.” When I questioned that further she said, “Well, I’ll mail you a script to have blood work done to check your hormone levels.” Though we finally arrived at a plan that made sense to me, I was skeptical that I had been the one to guide us to that point, that she had not called me in for an office visit but was prescribing things over the phone, and that 90% of my understanding had come from my own research not from my doctor’s explanation of what might be going on/why she was prescribing what she was prescribing.

M. and I agreed to get another doctor.

A short aside— I’ve come to learn that New Jersey hospitals have notoriously high rates of caesarians and other interventions in childbirth. The national rate for caesarians is a shocking 31% (medically justifiable rate set by the WHO is 10-15% based on a 2007 study in which higher rates of morbidity were found with rates below 10% and higher than 15%). The hospitals closest to us in NJ have rates in that range and higher—one at just under HALF of all births! Also the use of Petocin (to induce labor) is so common around here that I actually do not know of a single recent mom who was not given Petocin. I think we are very lucky to have these sorts of medical options when they are truly needed but I am increasingly skeptical of the prevalence in which they are used. In looking for a new obgyn therefore, I emailed a handful of doulas to see who they’ve worked with and been happy with—who they would recommend as a doctor who supports natural childbirth….

Through this, I found a new doctor with the first name Fred. I’ll call him Dr. Fred.

Dr. Fred was night-and-day compared to my old obgyn. One half-hour appointment and he explained everything in detail to me and talked through the shaping diagnosis. He said that since I had been totally regular while on the pill that I did not have an ‘outflow’ problem. Since I didn’t bleed on Provera it was clear that I didn’t have enough estrogen present… but the question he needed to figure out was what was preventing my estrogen. During the exam, he was able to express some liquid from my breasts which came as a huge surprise to me. Immediately he suspected that my prolactin might be elevated and ordered bloodwork and an MRI. He explained that there was probably a small tumor on my pituitary gland called a prolactinoma which was secreting prolactin (the hormone responsible for milk production) and that this would explain my loss of periods. He assured me that this was essentially never cancerous and while it sounded scary it would be fully treatable with medication.

Sure enough, when the bloodwork came back, all hormones were in the normal range except for prolactin which was elevated at 61. I scheduled an MRI and started Cabergoline which reduces the prolactin levels and shrinks a tumor that’s producing prolactin.

The MRI was scary for a girl like me who’s not a fan of confined spaces and hates needles. They had to do it with and without contrast which means ¾ of the way through they start an IV that injects dye into my bloodstream to my brain. On the suggestion of a friend, I asked my doctor if I could have some valium before the MRI and I highly recommend this to anyone who’s nervous about this sort of procedure. I was worried that the valium might make me really loopy or dopey, but in fact it just leveled out my nerves so that I didn’t feel like my heart would come pounding out of my chest and I would go running for the door. Another good suggestion I followed was to keep my eyes closed starting immediately when I lay down and did NOT open them until it was ALL over. That way I never really saw how confined the space is. Lastly, I kind of just focused on the sounds coming from the machine which were actually (and maybe the valium helped) kind of amusing and entertaining. All in all the MRI was not the most fun way to spend a morning, but not as bad as I had feared.

Dr Fred’s office called on Friday-- the Friday before the forth of July when many (myself included) were off work. I was out shopping for perennials when they called. Mike answered and they asked if we could come in. Mike reached me on my cell phone. Being called into the doctor’s office on the beginning of a holiday weekend to review results of an MRI was a little disconcerting to say the least. M. and I went over together. Dr. Fred greeted us with the MRI summary in hand. He said that as he expected there was a tumor on my pituitary gland however, it was larger than what he had anticipated. He said rather than it being a micro adenoma which is under 1cm, this tumor was a macro adenoma of 1.1cm. Dr. Fred was reassuring that this was just over the distinction for a macro adenoma, but never the less advised us to make an appointment with a neurosurgeon.

It is amazing to me that within two days, Dr. Fred had a solid diagnosis and proposed treatment plan. While a pituitary tumor was certainly the last thing I would have though was causing my amenorrhea, I do feel like my other doctor should have been more pro-active about the diagnosis. Lesson learned here is to do your own research- especially since the internet offers such a wealth of information. Secondly, don’t hesitate to switch doctors or see someone else. I think I may write a letter to my old obgyn—not to be accusatory, but just to outline why I left their practice and what my ultimate diagnosis was. Maybe next time they will err on the side of caution to complete a full diagnosis instead of a hit-or-miss prescription of hormones.

*to be continued*


  1. I'm so sorry Julia that you're having to go through this. I can relate to having to rely on your own wherewithall to understand a health problem. It's unfortunate but it sounds like your new doctor is all that your first doctor wasn't. That's a wonderful comfort and relief I'm sure. Hugs for you.

  2. What a good thing that you did your own research and changed doctors. A letter to your former doctor is in order just to let her know what happened.

  3. Julia,
    Thank you so much for sharing your story w/us. It is a reminder that our health is in our hands. Thank goodness you took the time to research and learn as much as you did. We can all learn from you. My prayers are with you.



  4. Oh Julia... what a tale. I think it is so great that you are telling your story, as you never know how it will help someone else. I can believe your first doctor story, as we have a very similar one (it caused Dan to be off work for a year...) Good for you for doing your own research and for trusting your gut.

    How are you feeling? Are able to get up and around yet? Sending a hug and hoping all is going well.