Where's my period? Should I get a second opinion?
June 21, 2016 10:56 PM   Subscribe

I'm in my mid twenties and healthy, except for the fact that I haven't had a period for over a year and a half.

My periods used to be regular, on a 30-day cycle, but then they spaced out to 40, then 70, then 90-day cycles, and after that I just haven't had a period since.

I saw an endocrinologist last year who specializes in PCOS, and she diagnosed me with PCOS. However, I don't fit the typical PCOS picture: no acne aside from maybe one pimple every few months, no hirsutism, mild weight gain around 5 lbs that I've since lost anyway. I've always been normal weight with a BMI of around 19-20 (same weight throughout high school and college, and all the women in my family are the same size as I am). I exercise regularly by hiking and walking, nothing too intense. This hasn't changed. I haven't had sex for years, so I'm definitely not pregnant. I have no other health issues. I don't have any family history of PCOS.

My oral glucose challenge test showed no insulin resistance, my A1c is 5%, and my ovaries didn't have the typical "string of pearls" appearance on ultrasound. I had three negative provera challenges, and, consistent with that, my serum estradiol was actually undetectable on two other occasions, which doesn't seem typical of PCOS (which is characterized by estrogen dominance, if I understand correctly). Neither my prolactin nor my testosterone were elevated, either, although my DHEA-S was a hair high (by maybe 2-3 units, literally). I had a negative head MRI last year. I even got an AMH, and that was extremely elevated, which is the main thing that is consistent with PCOS / anovulatory cycles.

At the time, I did question the diagnosis, but my endo said she was pretty sure it was PCOS because she had excluded everything else. I'm hesitant to get a second opinion, because the endocrinologist is an expert in this and she has seen a ton of cases, so I guess I should trust her diagnosis... and anyway, I live in a small town, and don't have the time to travel several hours to see another provider. The next time I will be able to travel out of town is in September. I also feel like because I'm on the younger side and not looking to conceive, my primary care doc and the endo kind of just shrugged after settling on the diagnosis and said that I could go on birth control if I wanted.

1) Has your period ever gone missing? Did your period come back? What did you do to make it come back? It's annoying to menstruate, yeah, but I feel like at this point I should probably look into it a bit more.

2) Should I get a second opinion? How do second opinions even work? Would it even change anything, anyway? Will the first endo I saw be miffed? A major mental block that is keeping me from seeing a second opinion is the fact that the endocrinologist who made the initial diagnosis was very qualified and an expert in PCOS specifically... I just don't even know what other possibilities remain on the differential at this point.

Basically, I feel all-around pretty healthy, except my period is MIA. What's up with this?
posted by anonymous to Health & Fitness (17 answers total) 2 users marked this as a favorite
A major mental block that is keeping me from seeing a second opinion is the fact that the endocrinologist who made the initial diagnosis was very qualified and an expert in PCOS specifically

When all one has is a hammer, everything looks like a nail.

Never put the 'feelings' of a doctor above your own health. Your situation is not normal. Please seek another opinion.
posted by Thella at 11:15 PM on June 21, 2016 [13 favorites]

Has your prolactin level been checked (via blood test)? A microprolactinoma caused my period to slow down and then stop over the course of several years. Like you, I didn't have any other PCOS-like symptoms. You said you had a head MRI, but were they looking for pituitary tumors? (My prolactin had already been measured as high before I had an MRI, so I'm not sure how it works if you have different blood tests.)

If your prolactin hasn't been tested, or if it was tested and was borderline high, or even if it's been months since the test, I recommend getting another opinion and asking about it. (Once I was on medication, my period returned before my prolactin level was in the "right" range, so I don't think the ranges are set in stone.) Worst case scenario is that you get a second diagnosis of PCOS.
posted by neushoorn at 11:31 PM on June 21, 2016 [3 favorites]

Have you had your thyroid checked?
posted by meijusa at 12:56 AM on June 22, 2016 [1 favorite]

IANA physician or clinician of any sort but I do, amongst other things, biomedical research around menopause. Regardless of reproductive plans, women need appropriate levels of estradiol for bone deposition and maintenance - if you have undetectable serum estradiol in your twenties, you need to be getting hormone replacement (in the form of oral contraceptives) if you don't want a collapsing spine and easily fractured hips in your later years. It's not urgent - you are still young enough that you're building new bone, not losing ground, and bone deposition is a slow business anyway - but if your doctors haven't talked to you about this, you should get a second opinion, regardless of whether you're okay with your PCOS diagnosis-of-exclusion.

How to get a second opinion: tell whoever referred you to the first endocrinologist that you would like to be referred to another one for a second opinion. If you self-referred, skip that step and go find a second endocrinologist. Sometimes insurance won't pay for a second opinion (surprise), but don't let anyone give you any non-financial guff about wanting one. It's your right as a patient, because doctors are fallible just like everyone else. The first endocrinologist might be miffed but it's unprofessional.
posted by gingerest at 1:14 AM on June 22, 2016 [12 favorites]

I would strongly recommend that you see a gynecologist. Workup and treatment of amenorrhea is part of the bread and butter of that field.

If you have PCOS, you absolutely need to be taking some form of hormone (a Mirena, oral contraceptive, depo...) for endometrial lining protection; a persistently thickened endometrial lining places you at higher risk for endometrial hyperplasia/cancer.

Gingerist is spot on with that advice, above. I wonder if you might have hypothalamic amenorrhea, your BMI, while normal, is on the thin side. If this were the case you may need supplementation with estrogen for protection of your bone health. You'd certainly need routine bone scans.
posted by noonday at 4:35 AM on June 22, 2016 [3 favorites]

A close friend of mine ended up having a late term abortion tragedy based on the expert opinion of a leading professional that her child would not be viable at birth because of rare blah blah blah. My heartbroken friend didn't get a second opinion because she trusted the professional. But even pros are human, and it turned out that there had been absolutely nothing wrong with her baby. Go get a second opinion. The first expert may be correct, but it's your body and your life and you want to make absolutely certain to the extent possible that you have got the correct diagnosis. Apologies for the horror story.
posted by Bella Donna at 5:12 AM on June 22, 2016 [3 favorites]

I've always had extremely irregular periods, which I thought were stress-linked (e.g. I'd always get my period the day after my final university exam or deadline, even if I hadn't seen it for 3 months). After a period where (a) pregnancy was a physical impossibility, short of the Archangel Gabriel delivering surprising news (b) I hadn't had a period in 9 months, I went to get tested in multiple ways (multiple blood workups, ultrasounds, etc.) And the diagnosis was "huh, that's weird" with a side of "maybe PCOS? It's not clear." from a second opinion.

Eventually my periods came back after I moved in with my now-fiance and my stress dropped dramatically. They are now more regular that they ever have been in my life (now, on average, appearing once every 32-40 days; they were dramatically less regular before). Living with him has also normalized my (previously quite low) blood pressure and caused me to lose excess weight.

So: is stress a possible cause?

And yes, get a second opinion because this isn't normal for you. It was more within the realm of normal for me (I had literally never had a regular period, and still have a 5-7 day window for appearances).
posted by flibbertigibbet at 6:29 AM on June 22, 2016 [2 favorites]

PCOS is not the only cause of missed periods. There's a whole algorithm that is well known to gynecologists. You should probably see one.
posted by gramcracker at 6:49 AM on June 22, 2016

Seconding prolactinomas. Have that checked.
posted by Omnomnom at 7:19 AM on June 22, 2016

I have PCOS and also have no symptoms other than extremely irregular periods. I 100% have PCOS, complete with the C's on my O's. The term you are looking for is "thin PCOS." There is a lot about this online. There are indeed women with PCOS who are not overweight and do not have acne or hirsutism.

I agree you should also get a second opinion, though--one difference between you and me is I never had regular periods, and I also DO have a family history of PCOS.
posted by millipede at 8:14 AM on June 22, 2016 [1 favorite]

I think you should go get a second opinion. Not having a period means that something is up, and it would be good to know what. Doctors are well-educated people, but they're still people and sometimes they make mistakes.
posted by colfax at 8:30 AM on June 22, 2016 [1 favorite]

Yes, get a second opinion from a gynecologist and ask them to rule out early menopause. It's rare to go through it in your 20s or 30s, but not impossible. In any case, hormone replacement is your friend.
posted by Beethoven's Sith at 8:38 AM on June 22, 2016

Maybe you do have very atypical PCOS but you should get second opinion. Not everyone with PCOS is overweight and those that aren't tend to have less of the other symptoms, however, everyone I know with PCOS, myself included, their symptoms started at puberty and so they never had regular periods. To have had regular periods for 5-10 years then start having problems would be highly unusual IMHO. AMH may be elevated in PCOS but it is not currently (yet) a diagnostic criteria. Based on what you've said here, it seems that you don't meet the standard diagnostic criteria for PCOS. Sounds like your doctor has simply given you the diagnosis because they couldn't find anything wrong. I would start with a more general physician - either a GP or Gynecologist
posted by missmagenta at 8:50 AM on June 22, 2016

The thing to remember with PCOS is that it's a syndrome, with a collection of symptoms, not a disease with specific symptoms. Not everyone has the same manifestation of it. I never had the hirsutism, acne or missing periods. Instead I had weight gain, male-pattern hair loss and constant bleeding for weeks/months. But it was still PCOS, and the same meds have helped me that helped the hirsute, non-cycling women.

"Thin PCOS," as mentioned above, is A Thing, though. Look that up and see if it fits, get a second opinion if that helps. But consider trying some of the medications, such as a low-dose birth control to regulate your cycle. One of the huge risks with PCOS is endometrial cancer, if you don't induce regular periods to shed the uterine lining. Good luck!
posted by jhope71 at 9:29 AM on June 22, 2016

I also have Thin PCOS and a thyroid issue and my thyroid seems to be the thing that wonks up my period more than anything else (just from my anecdotal experience in forgetting to take my thyroid meds). Did they check that? My periods also seem affected when my Vitamin B is low (I have pernicious anemia, so it gets SUPER low not just...normal low.) So a lot of things could be at work.

I want to address your anxiety about getting a second opinion, though: your first endo will not be miffed, I promise, if she even finds out about it. People get second opinions ALL THE TIME and it's something doctors are really, really used to and okay with you doing. Getting a second opinion won't hurt, and even if this second opinion agrees with the first doctor's diagnosis, it's valuable in terms of giving you peace of mind. I would get one if I were you.
posted by Countess Sandwich at 10:47 AM on June 22, 2016 [2 favorites]

Have you lost a ton of weight? my bud lost hers for years until she got some srs weight back and generally got a lot less stressy :/
posted by speakeasy at 10:53 AM on June 22, 2016

Happened to me but I was overweight and all the (male) doctors said - "it is because you are fat." After years of this finally a (female)OB-Gyn diagnosed premature menopause that had started around age 28. May not be your issue but that is what happened to me. Endocrinologist confirmed my ovaries had failed a long time ago. No apparent reason- "could be one of 200 reasons."
posted by shaarog at 1:07 PM on June 22, 2016

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