Cycles keep getting longer, does anyone else's TTC feel like a medical mystery

[clarkem]

I'm almost 37, and have been tracking my cycles for the past few years. My cycle length has changed somewhat after each pregnancy (5 pregnancies / 1 LC), but has gotten a lot longer in the past ~8 months (during which there have been no pregnancies). The past 4 cycles have been 36/37 days (all on letrozole). I seem to be ovulating regularly (based on OPKs + temping) and my luteal phase has remained about the same (~11 days). So, I'm ovulating on around day 26 of 37, up from a historic average of ~day 20 of 31.

I've had an assortment of other weird medical things in the past year too:

• Rapid changes in vision localized to the eye (not optic nerve)
• A severe, unexplained reaction to cabergoline (drug to suppress milk production after a late-term loss) under general anesthesia with generalized muscle weakness that seemed similar to an autoimmune response
• A false positive on a syphillis screen (treponema), while I'm confident I don't have syphillis, these false positives sometimes happen due to autoimmune conditions, pregnancy, or other types of infections
• A possible reduction in fertility, since our historic problem was staying pregnant, and historically we'd see a positive test every 3-6 months, and now we're 8 cycles since our last loss and haven't seen any positives with timed intercourse.

My (and partner's) fertility workup has all been normal so far. I can't remember all of it, but normal thyroid function, progesterone, vitamin D, HSG, sperm count/motility, etc. I've been on letrozole for 5 or 6 cycles. I'm also taking a prenatal, baby aspirin, CoQ10, and a few other vitamins (vitamin D, B complex, fish oil).

I'm not asking for medical advice, but in-between medical followups I mostly just want to know 1) does anyone else's TTC journey feel like a medical mystery that their doctors aren't entirely invested in; 2) has anyone else experienced changing or lengthening cycles (and was there any reason)

 

[jerm]

@clarkem Oof. I'm so sorry to hear about all of this. This is very tough and I hope you're able to find some answers and appropriate medical treatment.

My first thought is that after everything you described, I'd almost be more surprised if your cycle DIDN'T change or wasn't impacted in some way (especially given all that letrozole recently). That's a lot to be putting your body through and (to state the obvious) the letrozole specifically has a huge impact on your hormones.

As to why your follicular phase is getting longer: my understanding is that if your follicular phase is abnormally long it's because either:

1) Something is delaying your return to hormonal baseline, so it takes a while before your body can initiate the next phase of developing a follicle (in a 14 day follicular phase for example your hormones aren't at baseline on day 1, i. e. the first day of your menstrual cycle - don't quote me on these numbers but it's something like you spend your period/~7 days returning to baseline then ~7 days maturing a follicle and then you ovulate). Or

2) Your body goes through the process of maturing a follicle over ~7 days, but then can't actually successfully ovulate, and so it starts over - I think this happens in PCOS, constantly maturing follicles but not able to release eggs, thus the polycystic ovaries. In this scenario there's something off about the process that actually triggers ovulation.

This is my personal understanding and I hope others will chime in if I'm missing any causes or misunderstood anything above.

Best of luck to you. This is so hard and I can only imagine how frustrated you must be. You are so strong.

 

[clarkem]

@jerm Thanks for the thoughts. I definitely expected a change with letrozole, but I expected it in the other direction. Since my cycle was already kind of long, I expected ovulation might happen a few days earlier and my cycle might shorten. My doctors were also a little surprised but didn't have an explanation.

 

[jerm]

@clarkem Are any of your other vitamins (prenatal, CoQ10) new to your routine? Did you start any around the time your cycles started lengthening? I think letrozole is much more likely to be the culprit but anecdotally both CoQ10 and the iodine in prenatals affected my cycle length (CoQ10 made mine shorter and on a different cycle iodine made mine longer).

 

[clarkem]

@jerm The vitamins aren't new.I've been on the full set of supplements since August, and some of them much longer.

 

[jerm]

@clarkem Probably not that, then. Again, I'm sorry you're dealing with all this. Hope you are able to get some answers!

 

[clarkem]

@jerm Thanks, I appreciate it!

 

[jexpoline]

@clarkem Did you get your prolactin checked?

 

[clarkem]

@jexpoline Yeah, I had prolactin tested as part of my initial workup about a year ago and it was normal. Thanks for the suggestion though.

 

[philipluthfi]

@clarkem If you’re taking melatonin, it can really mess up your ovulation cycle!

 

[clarkem]

@philipluthfi I'm not taking melatonin or any other supplements (other than what I listed) but that's good to be reminded of!