I don't have periods. Anyone else?
December 4, 2005 8:43 AM   Subscribe

I don't really have periods. I have one maybe twice a year and when it comes it's very normal (slight PMS symptoms, minor cramps, lasts about 5 days). I started my period when I was 11 and I've never had regular periods, it's always been this exact pattern.

I saw a doctor about this when I was 16, he didn't seem too concerned/interested, he said it could take a while for periods to settle down (five years seems excessive) and put me on the combined pill. I took the pill for a couple of years, but when I came off it, it was the same deal again.

I’m 25 now and still having periods once or twice a year. A little relevant background in no particular order: I weigh quite a bit more than I should right now, but this is a fairly recent development and two years ago I was 135lbs. I don’t find it especially hard to lose weight. Throughout my teens I was a little bit chubby, but not really, and the pattern has been the same whatever my weight. I’m pretty stressed out right now, but again, the periods have been the same whatever. I don’t have anything I would think of as PCOS symptoms, I’m unusually un-hairy, and I have somewhat dry skin. I’ve been more or less depressed since I was a teenager, and I was much less depressed on the pill. I also have some pretty extreme moods but they aren't the same as what I feel just before I get a period.

I’ve been ignoring this for too long, I actually forget that most young women have periods; then I remember and feel weird. I want to start thinking about having kids, and I’m starting the process of getting this all investigated. I am getting hormone tests done when I can, I had a thyroid test a few months ago that came back ok.

The reason I’m asking this here is that I feel like this situation can’t be THAT unusual, but looking around on the internet I only ever find stuff about periods that are irregular in ways that mine aren’t –length, pain, etc, and most of the stuff I find seems to point to PCOS, which I guess I might have, but it doesn’t seem at all like me. I just go for a year at a time without a period. Does anyone else have any experience of this?

I feel irrationally embarrased about this, but I will almost certainly comment to respond to any questions.
posted by anonymous to Health & Fitness (15 answers total) 1 user marked this as a favorite
Have you seen a gyno recently about that?
posted by k8t at 8:59 AM on December 4, 2005

The term you're looking for is Amenorrhea - the abscence of periods. This eMedicine article is technical but extraordinarily methodical in outlining the possible causes and logic for diagnosis ("Algorithms for Evaluation of Amenorrhea"). There is primary amenorrhea (when you haven't had a period by the time you are 16 years old - doesn't sound like you) and secondary amenorrhea (when you've had a period, but they've stopped or are irregular to the point of absence, notably after 6 months or more - sounds more like you). Secondary amenorrhea has a whole slew of possibilities - one of which is PCOS but there are others (read the amenorrhea with normal puberty).

Understand that you are entitled to figure this out with your doctor, especially if you're concerned and wondering why you don't have periods and would like an explanation, and even if you don't particularly want to know, because excessive or lack of menstruation can be a sign of something else - it doesn't have to be, but it often is. The steps to go through seem fairly clear here, in the section "Algorithm for evaluation of amenorrhea with normal puberty". Of course, I have no way of knowing if you had 'normal' puberty or not (sigh, what would Foucault say about that term?) but it's something to at least start the conversation with your doctor.

All of that is to say that you should begin on this path. But don't let the medical possibilities listed there freak you out - because it's also entirely possible that this cycle is just 'normal' for you and it's nothing to worry about. If you're not ovulating regularly, having kids becomes harder, but not impossible - this could take some time to go through all of the steps, so start now and you'll have lots of time to figure it all out.

Best of luck to you - you've done the first step, which is to recognize that something feels not right, and want to figure out why.
posted by fionab at 9:14 AM on December 4, 2005

My wife is on The Pill, she has had perhaps a half-dozen periods in the past twenty years, and the multiple doctors she has seen have all been quite confident in their assertion that there is absolutely nothing to worry about.

Enjoy it, lady. You're blessed.
posted by five fresh fish at 9:25 AM on December 4, 2005

That's me in a nutshell. I get a period once or twice a year. I was back and forth to the doctor a lot about it and the upshot for me was that I have a small pituitary tumor that inhibits estrogen production. This is No Big Deal according to my doc unless 1) I want to have babies in which case I'd want to make sure I was ovulating regularly, hormone supplements could do that 2) I am experiencing bone loss due to low estrogen. I do weight-bearing exercises to deal with this and keep an eye on it generally. 3) I start having vision problems if my tumor grows. I get regular MRIs and pay a little more attention than normal to my peripheral vision.

The weird thing is that my estrogen seems to be just slightly low. The lessening of my periods came when I moved to a rural area and now mainly interact with a much smaller group of people, mainly my boyfriend, my post-menopausal landlady and the older people I teach. When I travel and interact with women my own age (mid-thirties) it seems to kick my cycle into motion. It's odd but it's been a regular occurrence for the past three years or so. My doc gave me some medicine that could also jump start my periods if I was concerned about them, but his opinion was that if I wasn't having them and didn't mind, then he didn't mind either, at least as long as I was paying attention to the things listed above. He worked in a fertility clinic and seemed happy that I was so laissez-faire about it.

So, I'm not a doc, but you might want to talk to yours and add MRI to the list of things to get when you go. Most tumors grow slowly if at all, but since the side-effects of a suddenly growing tumor can be scary, it might be worth knowing if you're likely to have this problem. Email is in my profile if you have more questions.
posted by jessamyn at 9:26 AM on December 4, 2005 [1 favorite]

The Mayo Clinic has a much easier outline to read - less technical, but perhaps a better first step? As you can see, it's not just PCOS - pituitary issues, for example. This article has an easier style as well.

five fresh fish - yeah, the pill can definitely do this, but she said it's that she's off the pill now and it's the same deal and that is what's causing concern.
posted by fionab at 9:29 AM on December 4, 2005

Do you have decent health insurance? You should be getting a gyno checkup once a year, no matter what. It's unpleasant, but the peace of mind is worth it. Also, ask around and try to get a rec for a really good doctor. It makes all of the difference in the world. So many doctors (in my experience) can be very dismissive about "female issues" or will not take the time to explain to you why they're not concerned. I just recently found a new doctor based on a recommendation who took the time to sit me down and explain what my options were based on something I've been concerned about for a long time, and exactly why I shouldn't be worried. You deserve the same!
posted by pazazygeek at 10:23 AM on December 4, 2005

Yes, you do. If you can, I'd talk to at least two gynecologists during the course of your investigation. You really may have nothing to worry about and be blessed, as has been said. I'd be very careful about taking medicine to make you "normal" if there aren't significant health risks to staying as you are - after all, medicine isn't risk-free itself.
posted by lorrer at 11:20 AM on December 4, 2005

*yes, you do deserve the same.
posted by lorrer at 11:20 AM on December 4, 2005

Unfortunately, you won't be able to comment anonymously since anonymous threads don't support that (I can't tell if you knew that based on your post).
posted by abcde at 11:22 AM on December 4, 2005

The amount of hormone in modern Pills is miniscule. It would not surprise me to find out that it's well within the normal range of human variability for some women to have hormone levels akin to those of Pill-using women.
posted by five fresh fish at 1:23 PM on December 4, 2005

It would be worth it for you to see a reproductive endocrinologist. I have PCOS, and it wasn't that hard to diagnose (an ultrasound of your ovaries and some blood tests). The symptoms I have/had are insulin resistance, enlarged cystic ovaries, acanthosis nigricans (darker, thicker skin on my elbows) and amenorrhea. I never had excessive body hair or acne.

When I was first diagnosed I was put on the Pill so I would have regular periods. I had to stop taking it because it affected my blood pressure. Now I have been on Glucophage for about five years and with a combination of that, diet, and exercise, have totally normal periods.

Even if you don't have it, it would be good to rule it out. It's surprisingly common (1 in 10 women, and not everyone has a lot of dramatic symptoms).
posted by nekton at 3:37 PM on December 4, 2005 [1 favorite]

Seconding the suggestion that you see an endocrinologist.

I'm not sure if you were implying that when you were on the Pill (basically synthetic derivatives of female sex steroid hormones) for a couple years that you had periods. If adding them to the mix induced regular menstruation, you'd want to be sure that something isn't way off somewhere in the hormone pathway that's involved.

One other reason to check with an endocrinologist: if it turns out that you've got low estrogen levels, it could be contributing to your depression.
posted by neda at 5:22 PM on December 4, 2005

Don't forget that menopause can come at any age--even women in their teens can enter menopause. And it's not an on/off switch, but rather a slow diminishment of ovarian hormone output, so it's possible to stay at the "nearly cycling" level for quite some time. If this is the case, things like depression might well go along with low estrogen levels in the brain.

Also important, however, is looking at the sort of thing jessamyn mentioned--are you maintaining your bone density--and also uterine health--are you cycling enough to keep your endometrium from overgrowing to cancerous levels?

All of this can be part of a reproductive endocrinologist's workup, although it's not unusual to have "you're too young" dismiss the concern. As someone else noted, more than one doctor is a good way to cover those odds. If you can afford it, it's probably a good idea to start getting a serious workup to find out what the implications of this situation are for your overall health. From that will follow what you need and may or may not want to do about it.
posted by salt at 8:03 PM on December 4, 2005

How are your eating habits?
posted by smartypanties at 9:38 PM on December 4, 2005

I have PCOS too. I realized after I didn't have a period for like, two years, and then thought "something might be up with that." You could have something else, but if it is PCOS (which seems the most likely culprit), you can still have kids, and it really won't affect your life negatively at all.

I don't have lots of body hair (though I do have a faint dark line down my stomach, but I've seen more on girls at the gym, back when I went to the gym), or acne, or anything else like that. The symptoms don't always or even usually manifest themselves really severely.

My doctor put me on the pill and once I got over the insane-o side effects because my body wasn't used to the hormones, I started having "normal" cycles. It has the added bonus of pregnancy prevention. Huzzah!

(Count me in for "It's a really good idea to rule out." The diagnosis involved talking to a gynecologist, getting blood tests and an ultra-sound).
posted by SoftRain at 11:15 PM on December 4, 2005

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