My cycle has never been regular and lab tests aren't giving me answers

[Allie M]

Hello, I am hoping that someone has suggestions or next steps to take to understand what’s going on with my menstrual cycle. Long post incoming!

I am 21 years old. I had my first period in June of 2014. My period has never, ever been regular, and I have absolutely no consistency between periods.

My period skips months at a time. Sometimes it’s only 2 months, frequently it's 3, and it’s even gone 4 or 5 months at a time. There have also been multiple occasions where my period has only been 2 to 3 weeks apart, meaning that I had two cycles in a month. On one occasion, I went 11 and a half months without a period, from January to December of 2016.

My record for how many menstrual cycles I’ve had in a row was only 3 months, which occurred a few years ago. I will infrequently have a cycle for two months in a row. Occasionally my period is only spotting, and sometimes my period is exclusively an oxidized/darker colored blood. I’ve had periods as short as 3 days and as long as 11 or 12 days.

Generally (and it certainly hasn’t been the rule), I have a heavier flow, around 5 days long. I don’t normally get cramps but more so a consistent, aching back pain, but usually manageable, painwise. I don’t know if I experience PMS symptoms because I can’t track it with it being inconsistent, but I do remember, on a few occasions, having a significant lack of energy the week before my cycle started.

There is 0 chance that I am, or have ever been, pregnant. I know my cycle is NOT correlated with my anxiety or stress. I do not have an eating disorder. It is not affected by my activity level. I have a lower but healthy BMI. I have never had any major health problems or accidents, nor do I have any pre-existing conditions.

I finally started to look into the issue in early 2020. In March 2020, I got a blood test done for the first time. Along with the complete blood count, they also tested for prolactin and free T4, all of which came back normal. However, TSH came back low, with a value of 0.45 mIU/L. We did a follow up blood test for T3, which was found to be normal at 95 ng/L. However, that doctor told us the hormone levels can fluctuate, and recommended that I do another blood test in a few months, just to confirm. However, with the pandemic, that was never done.

In late 2020, I had an external ultrasound done. They told me that everything with my ovaries looked normal and healthy.

In October 2021, I had another blood test done. Everything, again, was deemed normal. They tested my total testosterone, progesterone, FSH, TSH, free T4, and estradiol. They also did a lipids panel, everything was normal. There was a slight abnormality with my complete blood count, with MSH slightly low at 26.3 pg and MPV slightly high at 11.2 fL, but the doctor wasn’t concerned about that.

From December 2021 to February 2022, I was put on Aubra, the birth control pill, as a “test” to see if it would get my period to regulate itself. I expressed to the doctor that I wasn’t looking to treat the issue but rather, to find answers, and she assured me that this would be done as a test, and depending on what happened, it would give us our next step. So I took Aubra. I had a regular period for those three months. After I stopped the pill, I did not get my period the next month, nor did I for the following three months. After I missed the first period, I went back to my doctor, who basically told me that it was unfortunate, but there was nothing we could do because the blood tests came back normal, and suggested going on Aubra for longer. I declined.

Prior to all of the tests, my guess was that I had PCOS, mainly because it’s a frequent cause of otherwise unexplained oligomenorrhea. I have a significant amount of dark and/or coarse body hair, more so than average, but it likely still falls under what’s “normal” for a woman. However, I have never specifically been examined for hirsutism. But according to the blood tests, there's no evidence. One of my questions is wondering if the blood tests I’ve done are enough evidence to rule out hormonal issues? I can’t see any answer to my issue besides a hormonal problem, and it was really frustrating to see them come back normal, because it didn’t give me any answers.

Most importantly, as I said prior, I am NOT looking to treat or “fix” my menstrual cycle at the moment, and at the very least, not until I know the reason for the irregularity. All of the doctors I’ve talked to just wanted me to go on birth control to regulate it. It’s super frustrating, because all I want to do is to understand why this is happening. I’m not looking for a way to fix it, because that would be glazing over the fact that there is, obviously, a problem. All I want is answers, and all I’m getting in return is dismissed concerns and “just take birth control”. I don’t know if I need to take this to an OBGYN, or an endocrinologist, or someone else. I don’t know what labs I should look into or may need to retake, or if there are any other diagnostic tests. I don’t know what it could be, if it’s not PCOS. And worst of all, I don’t even know if it’s worth the exhaustion and frustration to have to fight to have my voice heard.

Any thoughts on next steps or things to consider would be greatly appreciated.

[Lara]

First, your menstrual cycle was not regular when you were on the pill because pill bleeds are not menstrual cycles. Follow the link to my video about this topic.

And then possibly start with my blog post Is it PCOS or undereating? where I talk about LH to FSH ratio. That could give you some insight.

Finally, of course see my book Period Repair Manual.