Walk me through the process of dealing with my health/fertility issues?
March 11, 2016 10:52 AM   Subscribe

I don't get my period and I need to change that.

I'm in my late twenties. I've never had a regular period. I was on birth control for several years but I've been off it for about two years now. I have always worried about my period or lack thereof in the back of my head, but figured I'd deal with it later. Since I'm now at the point where I'd like to have a baby in a couple years (and to be honest, if I got pregnant tomorrow I'd be thrilled) it seems like now is a good time to start dealing with it.

I've had three periods in the last year. It's been 4 months since my last. At my last OBGYN checkup I brought up this issue, but she essentially blew me off and told me it was nothing to worry about and to just make sure I was eating well and exercising. I'm a very healthy weight and it IS something to worry about!

Anyway. What do I do, exactly? Do I go back to the gynecologist and demand she start running tests? Do I go directly to a reproductive endocrinologist?

Also, I actually just started a new job so I'm about to pick a health care plan. Are these kinds of tests generally covered or do they count as infertility treatment, which I understand is covered less often?

Has anyone else been through this process? Can you walk me through what's about to happen or give me any tips? I dread doctors visits and this is very overwhelming for me. Thank you very much.
posted by ohsnapdragon to Health & Fitness (29 answers total) 8 users marked this as a favorite
Go directly to a reproductive endocrinologist.

As for the health coverage, it depends - some of it is infertility treatment, so if you can get a plan that covers that it's worth trying for.
posted by medusa at 11:02 AM on March 11, 2016 [4 favorites]

If your obgyn isn't taking this seriously, find a new obgyn or go directly to a reproductive endocrinologist if you're able to. Initially, the testing will likely be blood panels to get more info about hormone levels and other possible contributors. The next steps will likely depend on those results and it's hard to hazard a guess about what that can look like with so little info at this point. If you do have a choice of health plans, choose the one with the most robust fertility coverage in case you end up needing it. Initial tests are likely covered by most plans, but if you do end up needing more intervention, you want to make sure you're not paying out of pocket for most of it.

As for the overwhelm, it's absolutely fine to shop around for doctors until you find one that listens to you and treats you in a respectful and comfortable way. Just like there are good plumbers and bad ones, there are good doctors and bad ones. Don't stick with someone who doesn't inspire confidence and a feeling of being respected.
posted by quince at 11:02 AM on March 11, 2016 [3 favorites]

I had to spend some time with a Reproductive Endocrinologist, but for different reasons. The first step that any doctor will (should) do is blood work. You can start with your GP, and ask for a comprehensive panel. Basically ask for every test that your insurance will cover. With a copy of your results in hand you can visit a RE, so that they will not need to repeat your tests. Most things with an RE are not covered, except blood work, and any testing when you are actually pregnant. Unless you have unusually good insurance, everything else is generally out of pocket. But PLEASE don't let that deter you, especially if you want to have children some day. It's so much easier (and ultimately cheaper!) if you get these things sorted out when you are younger.

If you don't feel ready to see an RE, absolutely you must change OB's. Your OB is not taking you seriously at all. I was in a similar situation with my then-OB which caused me to not take my situation seriously enough and I waited far too long to get proper intervention and help. Please don't wait like I did, make this a priority. You can ask your local FB groups for good referrals in your area (ask some of your mom friends to ask their FB Mommy groups for good referrals, I see a question like that at least once a week in my various groups).
posted by vignettist at 11:11 AM on March 11, 2016 [1 favorite]

When I didn't have a period for over a year, I went to a gynecologist, who referred me to a neurologist, who referred me to an endocrinologist; then I moved to a new place and my GP sent me to an internist, who eventually transferred me to another endocrinologist. During all of that, I had a normal gynecological exam, then a transvaginal ultrasound, then some simple neurological tests, and finally blood testing and an MRI. In my case, the issue was a prolactinoma, which does mess with your fertility but is totally treatable.

So, I don't list all of the doctors and tests to scare you, but just to let you know that it make take a handful of appointments and tests before things settle down. Looking back, I might have tried starting with an endocrinologist instead of my gynecologist, but of course I know that in my case it turned out to be an endocrine issue. Either way, you should certainly find a new gyno because a doctor who blows off any concern that you have isn't one that you want to work with.
posted by neushoorn at 11:16 AM on March 11, 2016

I had the same symptoms as you had with irregular periods all my life. I eventually got an obgyn to listen to me about it, and I'm glad I did. She was concerned I might have endometriosis which can lead to uterine cysts or infertility. After doing quite a few tests, including bloodwork and two ultrasounds, and trying different kinds of hormonal birth control, the conclusion was that I had PCOS and would need to stay on bc to have a regular period. No cysts, nothing to worry about as long as I didn't develop any new symptoms. PCOS makes it harder to conceive, but not impossible, especially if you know about it. I would definitely try a different gynecologist. It might be worth asking your PCP for a referral on this specific issue.
posted by possibilityleft at 11:27 AM on March 11, 2016

My irregular periods suddenly turned regular like clock work after I finally resolved long standing, unrecognized anemia. I have read that low body fat in a woman can be a culprit as well. I have also read that simply gaining 5 pounds sometimes resolves fertility problems. You have to be carrying (iirc) 25,000 "extra" calories in the form of fat before the body thinks you can support a pregnancy. Sometimes, women who are avid exercisers need to intentionally tone it down a bit.

There were underlying causes to my anemia that first had to get identified. So, it wasn't quite as simple as just taking a few supplements. All I am saying is that there can be relatively benign causes.

So, make sure that what you think is a healthy weight isn't actually on the low side and make sure you aren't anemic. Also, try to find a doc you like and have good rapport with. I have always gotten my best care from doctors I was comfortable talking with. It can make a substantial difference, especially when the chips are down.
posted by Michele in California at 11:30 AM on March 11, 2016 [1 favorite]

I believe it was an ultrasound that showed I had PCOS - poly cystic ovary syndrome - that resulted in my ovaries just not releasing eggs, which made me have very long cycles between periods (but not as long as yours). This was an external ultrasound - not transvaginal. It was an OBGYN that requested the ultrasound after I went to urgent care because it had been over 6 weeks and I was not pregnant. If I remember correctly, they weren't too worried about 6 weeks, but more than 8 upped their concern. (I believe a lot of it was triggered due to high levels of stress in my case. The doctor prescribed me non-birth-control progesterone to take to trigger my period, but otherwise I reduced my stress by joining kickboxing to increase my activity level and switched jobs to get out of the high stress life.)

I agree you need to see another doctor. Head into urgent care if you can, as then it isn't an emergency, but they seem much more eager to solve the issue than at a regular annual visit. (In my experience.)
posted by jillithd at 11:30 AM on March 11, 2016 [1 favorite]

Response by poster: A couple more data points, in case it helps:

My BMI is 23. I don't go to the gym, but I have a dog so I walk a fair amount and we go on hikes occasionally. I eat fairly healthy, though I certainly don't eat low carb and I have 5-7 drinks a week. I don't think I'm stressed, I'm generally happy and like my life a lot. I did have a very basic blood test at my last appointment but she didn't share the results with me and I don't know what she was testing; I did ask specifically about my iron levels though and she said it was normal.

My mother also had irregular periods her whole life but did manage to have multiple pregnancies without medical intervention (though it took years in between).

YANMD but this is all helpful and interesting so far, thank you and keep it coming!
posted by ohsnapdragon at 11:40 AM on March 11, 2016 [1 favorite]

If your iron levels are fine, ask about B vitamins. That is another major cause of anemia.

Check the easy/obvious stuff early, just to be sure.

Best of luck.
posted by Michele in California at 11:46 AM on March 11, 2016

Best answer: Hi! I went through a similar experience. My suggestion to you would be to find a supportive local or online community to guide and help you through this process. There are many well-run and highly moderated Facebook support groups surrounding infertility. You'll find it's a huge community, and initially the amount of information can be overwhelming, but it's helpful to find and to talk to women who have been through similar experiences and can walk you through this.

To start this process, you need to make it clear to whatever doctor you see that your main concern is conceiving a child. I think you're getting blown off by your OB because you're presenting your problem as having irregular periods, which isn't in itself something to be worried about. I know it sounds backward, but you need to communicate that your primary problem is unexplained infertility and that you want to fix that problem (and conceive). Don't go in to your OB's office (or an RE's office) asking them to tell you why you have irregular periods. Ask them to help you conceive a child. (Again, yes, totally backwards, I get that.)

Finally, in case it's at all helpful, I'll briefly share my process with you:
After a history of irregular periods and failing to conceive after 12 months of trying, I sought help from my OB. We started with bloodwork and a transvaginal ultrasound, which didn't reveal any issues. My OB suggested that, since I was nearing 30 and had unexplained fertility, we go ahead and try a low dose of a fertility drug that can trigger ovulation. It's called Clomid - if you haven't heard of it, you will soon, I'm sure. It took two rounds of Clomid to conceive my son, who's now 15 months.

I never found the cause of my irregular periods prepregnancy, because we stopped testing for things once I conceived. They're now normal as can be.
posted by pecanpies at 11:46 AM on March 11, 2016 [3 favorites]

(Also, I hope this goes without saying, but none of the above is meant as any sort of medical advice. I left out many details and what worked for me may not necessarily be the right treatment for you. I wasn't intending to imply that Clomid's some sort of magic potion that sorted everything right out. It's just the drug that we used in my situation.)
posted by pecanpies at 11:49 AM on March 11, 2016

I've heard good things from Taking Charge of Your Fertility, which may help you understand more of the biology and signs behind your cycle. I don't remember anything covering ovulation or cervical mucus in my sex ed in school, and paying attention to my cervical mucus is what helped me get pregnant. Sometimes it is empowering just to have more information about your own body and noticing your own signs of fertility.
posted by jillithd at 11:51 AM on March 11, 2016 [5 favorites]

In my case, the issue was a prolactinoma, which does mess with your fertility but is totally treatable.

This was definitely me also. I was not trying to conceive but wondering about my periods and an elevated prolactin level from routine tests that I got at the GP. My GP sent me to a reproductive endocrinologist who sent me in for an MRI where they diagnosed the pituitary adenoma (a pituitary tumor, but it's sort of normal as tumors go and easy to stay on top of medically). If I had wanted to have kids I could have taken some medicines to deal with it but I didn't and I've had irregular periods for the 15 years since then and I get regular-ish MRIs to check the thing but it's been fine since then.
posted by jessamyn at 11:51 AM on March 11, 2016

Best answer: I was in a similar boat in my late 20s. No regular period (actually none for 3 years), vaguely wanting to be pregnant, and unsure of next steps.

My issue was PCOS which was confirmed by an ultrasound and other physical indicators (I'm overweight with the added bonus of extra body hair). My past obgyns guessed PCOS based on the above factors but they didn't diagnose it with an ultrasound until I started having pain from all the cysts chilling in my ovaries.

Also reproductive specialist will be able to run blood work to see what's going on. At the doctor I went to, the first wave of fertility treatment was covered by insurance because the drugs they used were primarily used for other things. Letrozole is commonly prescribed for breast cancer if I recall correctly and the progesterone they used to jump start my period is commonly prescribed outside the world of fertility treatment.

My husband has unusually good insurance that has an annual cap on fertility treatment which I watched like a hawk. It seemed that the only things that directly impacted the limit were things done only during fertility treatment. The IUI and sperm analysis counted towards the total but the many, many ultrasounds did not. In our case the fertility coverage helped with more complex fertility treatment but regular insurance took care of the less complex stuff.

For me, all the fertility treatment meant a lot of doctor appointments, even when we knew what was going on and had a monthly plan. Each month went roughly as follows:
-get period, order drugs
-take Letrozole for days 3-7 of cycle
-follistim injections days 7-15 (this was added after just doing Letrozole wasn't effective)
-ultrasound around day 15 to check eggs (repeated every 2 days if the eggs took too long to mature)
-sex on a specific day, timed with ovulation
-repeat until pregnant

All of this is overwhelming and it's completely normal to be upset, sad, scared, etc. Just start with the tests and see where that takes you. You can memail me for a person to talk to, vent to, or whatever.
posted by toomanycurls at 11:53 AM on March 11, 2016

To start this process, you need to make it clear to whatever doctor you see that your main concern is conceiving a child. I think you're getting blown off by your OB because you're presenting your problem as having irregular periods,

I will second this. I knew a woman with "periods from hell" who was not getting taken seriously by doctors. She finally lied and claimed she wanted kids. Suddenly, they scheduled exploratory surgery instead of handing her more pain pills and sending her home.

Let them know you are concerned because you want a baby. It's a really shitty form of sexism, but menstrual problems are frequently just not taken seriously by doctors.
posted by Michele in California at 11:58 AM on March 11, 2016 [3 favorites]

Nthing that you do need to explicitly state you want to have kids. My lifetime of period problems were blown off because I didn't want to get pregnant in my teens and early 20s. Essentially the various doctors I saw had a "don't worry about it until/unless you want kids." Some, the shittier ones will discourage testing because fertility stuff isn't usually covered by insurance (which I've found is a cop-out used when doctors just don't want to do something).
posted by toomanycurls at 12:04 PM on March 11, 2016 [1 favorite]

I had somewhat irregular periods including months without a period off and on. At the point I was interested in trying to start to have kids, my OB had me do a round of Clomid, which seemed to jumpstart the periods. (He was willing to do more complicated stuff, but it turned out not to be necessary.)
posted by leahwrenn at 12:07 PM on March 11, 2016

I underwent fertility treatment for problems which turned out to be male factor. But one little tidbit I will pass on to you, I have a very long cycle and was concerned about the timing as a consequence. It turned out the first thing they did was put me on medication to control my cycle themselves. They were not going to wait around for my period :-) So get checked out, there is a lot they can do these days, you may be surprised.
posted by JoannaC at 12:30 PM on March 11, 2016

PCOS is pretty common and runs in families, doctors often miss it if you're normal weight and don't have any of the other "cosmetic" symptoms. See another doctor and make it clear that you're trying to get pregnant. Get a hormone panel and an ultrasound.

If your health plan doesn't cover fertility drugs, don't worry, its totally possible to get pregnant with PCOS but it can take a while because you don't ovulate monthly (and if you have it and don't have any of the other symptoms then your chances are so much greater), there are also several supplements you can try which can be as effective as some of the prescription treatments. But first get tested and emphasize that you're concerned about your fertility because you would like a baby soon.
posted by missmagenta at 1:53 PM on March 11, 2016 [1 favorite]

Before her first miscarriage and eventual pregnancy, my wife had irregular periods. She was diagnosed with PCOS, which led to infertility treatments. PCOS is very common, one of the symptoms is irregular periods, and most women with it are unaware they have it.

I want to second what other have said about your OB. Medical doctors should never, ever dismiss their patient's concerns, especially when it comes to reproductive health. When it comes to medical professionals, especially those who will be treating you during pregnancy, you want people who are both calm and reassuring, yet respectful of your concerns and vigilant enough to track down any potential problems.
posted by zarq at 2:07 PM on March 11, 2016

Nthing the recommendation to see a Reproductive Endocrinologist - no one here can diagnose what's going on, but they will be able to, and let you know what you're dealing with.

Here's what to expect at an RE: If you choose a large practice, you will be shocked by how many women are there. Infertility is a really common problem. Some will come with partners, others come alone - it's your call. The doctor will meet with you and just talk for the initial visit. If you decide to continue seeing them, they will give a standard GYN vaginal exam as well as take blood for testing and possibly do an ultrasound (this will likely be transvaginal - a thin wand will be inserted vaginally and moved around as you watch with the doctor or technician on a screen) - they will be looking at your ovaries and uterus, looking for any abnormalities or potential issues. If your partner accompanies you they will ask for a sperm sample for analysis as well. Infertility treatments (if it should turn out you need them at all) can be emotionally and psychologically draining, so if you don't feel a good rapport with the RE, you should meet with another until you find someone you feel is a good fit. If you're in the NYC area, I can make a recommendation.

Also this is woo-y so feel free to ignore, but I was astounded (especially since I don't believe in it) by the hormonal changes for the better I experienced when I started going to an acupuncturist who specialized in fertility issues. Acupuncture alone may or may not have made a difference, but when I started taking a mixture of Chinese herbs as part of my treatment, my egg count and quality made a noticeable increase. (full disclosure: This was treatment for secondary infertility in conjunction with IVF. I did not conceive).
posted by Mchelly at 2:38 PM on March 11, 2016

Just to add another voice--definitely seek a health care professional who takes your amenorrhea (lack of period) for four months seriously. Sure, it may not turn out to be a big deal, but it is something that should be investigated to determine the cause, even if you weren't planning a pregnancy. A GP would be fine, another OBGYN would be fine, a reproductive endocrinologist would be fine, a regular old endocrinologist might be ok too.

And anyway, you don't want to be pregnant with an OBGYN who ignores your concerns.
posted by snorkmaiden at 3:21 PM on March 11, 2016

I'm going to suggest Taking Charge of Your Fertility, using that book to learn to chart your basal body temperature, and making an appt with a reproductive endocrinologist. If you have a couple months worth of charts on hand, that will be an additional helpful data point for the RE. They definitely looked at my charts when I went (I had the opposite problem: perfect chart and regular cycle yet still couldn't get pregnant).
posted by soren_lorensen at 3:49 PM on March 11, 2016

all of a sudden they let me know it is actually increasing your risk of disease and cancer if you don't bleed somewhat regularly.

This goes contrary to all the medical advice I have received over the past several decades, I'd appreciate a citation if you have one.
posted by jessamyn at 4:10 PM on March 11, 2016 [3 favorites]

Best answer: jessamyn, in general, you are correct - the number of menstrual cycles you have in your life is directly correlated to your risk of breast and endometrial cancer. However, for people with PCOS, it's more complicated. It's advised that we get onto progestin/progesterone containing birth control to regularize our cycles, because women with PCOS have progesterone levels that are too low and anovulatory cycles and this is believed to be bad for your endometrium (uterine lining) and to increase your uterine cancer risk.

To the OP, I was in a similar situation, although I did know what to do because I am a physician. I would recommend going straight to a reproductive endocrinologist (RE). For a woman who is having regular periods, it is recommended to wait for one year of trying to get pregnant if you are under 35, but you don't have regular periods, so just go right in.

As everyone has said, you start by getting a panel of blood work, including hormone levels, and this would likely be followed by a pelvic ultrasound. You may not need any further testing beyond that, for example, if it is PCOS. The additional thing that I did was a full 3 hour oral glucose tolerance test, because the other tests I had done suggested I had PCOS, and women with PCOS who also have insulin resistance should benefit more from treatments like metformin. I was diagnosed with insulin resistance based on my test results. This very much surprised me because I am normal weight/BMI just like you. I was diagnosed with something called "lean PCOS".

My only other advice to you is to be cautious with any physician who's willing to give you Clomid off the bat, if you haven't actually been trying to get pregnant for quite some time and failing. I've noticed that some physicians will be very quick to prescribe Clomid if someone expresses any reservation about being able to get pregnant. Clomid significantly increases your risk of a multiple birth, and that is a big deal for both you and your babies. It puts you at much greater risk for being put on extended bed rest amongst other pregnancy complications, and ending up with preterm birth, which puts your babies at risk for a whole host of other medical problems. Not to mention that any twin mom will tell you that twins are a heck of a lot of work, although of course still a blessing, it's not the kind of decision that should be taken lightly.
posted by treehorn+bunny at 6:11 PM on March 11, 2016 [4 favorites]

Also, Taking Charge of Your Fertility is a fantastic book, but as another person who was only getting periods every 3 or 4 months, it was really annoying to try to track my cycles when a lot of what goes for a normal person wasn't happening for me. It's one thing to try to guess when you're ovulating when you have a window of about a week and know that you're probably ovulating - it's quite another when your window is months long and you're not even sure whether you ovulate at all.
posted by treehorn+bunny at 6:14 PM on March 11, 2016 [3 favorites]

OK, now I'm triple posting but I realized I didn't address your insurance coverage question. It's important to make the distinction that going to a reproductive endocrinologist for amenorrhea/oligomenorrhea is likely viewed differently by your insurance company than going in for fertility counseling and workup (i.e. non-elective versus elective). Same workup, it's all in the billing. I know this is the opposite of what pecan pies said above, but I agree that you want to make it clear that irregular periods is a problem because you're trying to get pregnant. A reproductive endocrinologist is unlikely to blow you off either way, though - this is their area of expertise.

Your doctor telling you that testing will not be covered by insurance is not a cop out (as someone accused, above) - paying for testing out of pocket is incredibly expensive and something that many people cannot afford to do, so I think it's quite important to mention. It's no skin off your doctor's back if insurance doesn't cover your testing because someone gets billed for it either way, and the fees that uninsured patients pay are higher than the negotiated rates that insurers get. Sometimes doctors do say that something won't be covered by insurance when what they really mean is "because what you're asking for isn't medically indicated." That's a different story - it's a true statement but it can be easier to blame the insurance company for not paying for testing than it would be to say "you don't need this testing and that's why I'm not ordering it."
posted by treehorn+bunny at 6:37 PM on March 11, 2016 [1 favorite]

Chiming in with a similar story - I've never had a regular period, had no periods at all for most of my twenties thanks to Depo, had problems getting pregnant. My OB took me seriously after I tried to conceive for eight months; I charted using Taking Charge of Your Fertility and my temp charts showed that something was definitely wrong. A transvaginal ultrasound showed a textbook case of PCOS although I have exactly zero other symptoms (BMI of 21, no hair issues, no acne, etc). I took a low dose of metformin to help regulate my cycle and conceived immediately for both of my pregnancies. Had metformin not worked, we would have tried Clomid and then IUI. I will probably stay on the pill until menopause simply for the convenience of scheduling my cycle (I'm done having kids). As far as I could tell, every option would have been covered under my health plan. Your certificate of insurance will tell you what is covered, and whether you can go see an RE without a referral.

If your OB waves off your report of irregular periods, try charting your temp for a few months - that's what really got my doctor paying attention. If your doctor suggests again that this is nothing to worry about, I'd find another one. My issues wound up being easily treatable in terms of conceiving but if I'd addressed them earlier I wouldn't have lost a year to trying. I just thought I was lucky in having fewer periods a year than most women I knew.
posted by peanut_mcgillicuty at 8:11 PM on March 11, 2016 [1 favorite]

Go directly to a reproductive endocrinologist. I got off birth control for the first time in many years to try to conceive and never had a natural period again, and I wasted a lot of time with the ob/gyn trying to figure out what was wrong and taking Clomid. Turns out I need industrial-strength injectable fertility meds to get anywhere, and I really regret the time I spent dicking around before I went to the RE.

My insurance covered everything under the ob/gyn and nothing under the RE, so there's that to consider. I got to skip all the normal diagnostic stuff at the RE because it had already been done, however, so that part might have been covered otherwise.
posted by sock puppet du jour at 10:02 PM on March 12, 2016

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