Adventures in Letrozole (sorry, long)

Austrogermokee · July 2014

I took Letrozole CD2-6 as directed by my RE. At the time, I felt woozy and tired, and had more headaches than usual. Then, I went in for my CD10 US and they said I'd responded well. I declined the Ovidrel because I felt like I could ovulate naturally soon. I got my positive OPKs on CD12 and 13 (Friday and Saturday). Friday I had an awful migraine, and had cramping up through Sunday morning.

Then, on Monday morning around 1:00 am, I woke up with some of the worst pain I'd ever felt. It went on forever. DH called the nurses' hotline, and was told they would page a doctor for us ASAP. The doctor never called, and eventually (and after four Tylenols) the pain subsided and I was able to sleep.

Monday afternoon, we went back to the RE's for an US. I was told I had a burst cyst, but that it hadn't twisted the ovary or bled out into my abdomen, and that things could have been much worse. I was told to start taking progesterone suppositories Monday night, was given oxycodone (yeehaw, party at my house!) in case things got really bad again, and that if I had conceived the cyst hadn't affected that. I was also told the letrozole hadn't caused the burst cyst, and that it was likely a "freak accident."

To me, the whole thing sounds like a steaming pile of horse poop. I take letrozole for the first time in my life, can feel cramping and my ovaries bulging, then I get my first burst cyst ever - but letrozole wasn't a factor? And why didn't we get a call back from the doctor on call? What's the point of having a doctor on call if they don't, y'know, CALL YOU?

At this point, I don't know what's next. I'm supposed to take the progesterone because the burst cyst means that my body wouldn't produce enough progesterone to maintain a pregnancy if I did conceive. I'm angry and upset, and DH is freaked out. The progesterone already has me woozy and moody.

We're not sure we're going to continue with IF treatment if I don't get a BFP this cycle.

Has anyone else had something like this happen?

kelley72 · July 2014

IFinTN with multiple follies it is possible to conceive so keep up with the progesterone.

If this is not your + cycle I would definitely deman more response and information from the dr. if I were to continue under their care.

Austrogermokee · July 2014

I know on CD 10 I had one mature and 2 or 3 immature follicles, and I O'd on day 13. The cyst (a corpus luteum) burst very early morning on CD14. The RE (my regular one was on vacation) said it was still possible I had conceived this cycle and I needed to take progesterone to make up for the loss of the corpus luteum cyst.

I declined the trigger because they waited until later that day to tell me that I had to come back and pick it up. DH and I share a car, and neither of us have flexible jobs. Getting back to the clinic during business hours just wasn't going to happen. I'm also hesitant to add more hormones than necessary to my body, as I don't respond well to them thanks to migraines.

marijaa333 · July 2014

So sorry this happened! Totally unforgivable that the doctor (your or someone covering for him/her) didn't call you right away. I also wonder if telling you outright that Letrozole didn't contribute is a bit of a red flag. At least they could have said "it's a very small chance," or been a little less quick to dismiss your concern. I would consider looking for a new doctor if you have that option.

I'm glad you seem to be taking all this in the best possible spirits and even joking about it. When can you test for pregnancy?

Austrogermokee · July 2014

They told me to test in two weeks, but I plan on testing 12DPO. I don't have high hopes.

The experience has both me and DH very concerned. We don't have a lot of options in our area, and overall we've been happy with Hopkins. It just seems like things go to hell in a handbasket when our doctor isn't available. I also wonder if they told me the letrozole didn't matter in order to get me to keep coming back, because I had said over the phone that I was considering ending treatment. I want a baby, but I also don't want to be in extreme pain or terrified.

marijaa333 · July 2014

I'm just contrasting this with my appointment today with a dermatologist who said there was a very low chance that a topical antibiotic he prescribed for acne was contributing to some pigmentation I noticed. He said it wasn't listed in the possible adverse effects and that he hasn't seen it in his 30 years of practice, but also said that our bodies are different and who knew whether there was a component of the antibiotic, or even the gel formulation it comes in, that could trigger pigmentation. In other words, he could have easily said "nonsense, it's not an adverse effect and I've never seen it before, it's just a coincidence," but didn't.

Can you ask your doctor if he can identify a reliable backup in case something happens next time?

Austrogermokee · July 2014

I should definitely do that. I think the doctor I saw yesterday was covering her own tracks - she was the one on call that night, and she also claimed she never got the message.

On a related note, this is how I feel while taking progesterone suppositories:

Davie813 · July 2014

Ugh--this sounds awful. I hope you can work out a plan with your doctor that gives you more peace of mind. Also, even though you don't have high hopes, FX for you when you test!