BC Makes me crazy, and I'm going to have to take it anyway (PCOS). If you're crazy on some, can you be OK on others?
October 30, 2012 7:49 PM   Subscribe

Just Diagnosed with PCOS (polycystic ovarian syndrome)... BC makes me crazy, but am going to have to take it... eep! Anyone else crazy on some BC but not others? Tell me there's hope!

I've just (like, yesterday) been diagnosed with PCOS. I'm having another blood test before Doc puts me on some sort of birth control. I was on OrthoTyiCyclen in college (say, 10 yrs ago) and it made me *crazy* and depressed... am terrified that I will spend months and months crazy while I test them all out. The last year or so has been super stressful already. Doc knows about my history with BC, but he was not my doctor at the time. You're not my doctor, but are there any BC pills that tend to *not* make people crazy? Are you crazy on some, but not others (is there hope??)?

I am married so craziness (largely, lots of crying) will directly affect other very nice person. Also, I am not overweight at all, and did not gain weight on Ortho. I cannot take low-dose or mini pills for PCOS. I don't have excess hair/acne that I'm concerned about, and am not pre-diabetic or anything. Doc mentioned IUD (localize the hormones?), but the idea creeps me out. I was also diagnosed with overactive bladder on the same day - so I've had a lot of pain/poking/proding "down there" and am really sick of it; IUD would be last resort at this point. Anything I can insert (and thus remove) myself is ok. Will probably want to (try to) get prengant in a year or so, so nothing permanent.

Any other words of encouragement or advice regarding PCOS or Overactive Bladder are more than welcome and much appreciated!!
posted by jrobin276 to Health & Fitness (28 answers total) 4 users marked this as a favorite
While I never experienced any "craziness" during my nearly 8 years on the pill, I just got an IUD (Mirena) a couple weeks ago, and I feel...well, kind of awesome actually. I assume it's because I'm not super whacked out on hormones all the time anymore. I have a lot more energy, and I feel de-fogged, if that makes sense. And I didn't really feel foggy before.

No two people react the exact same way, of course, but don't discount the IUD. Do some research, ask around. Chances are pretty good that you have some friends with IUDs who would be happy to tell you about them.

Disclaimer: hurt like a bitch getting it inserted and I had megacramps for two days afterward, but now it's like nothing ever happend and I don't have to take a pill every day and I feel better and it rules.

As far as other options go, I have known several people who have tried the nuva ring thing and hated it. Mood swings way more than with standard HBC.
posted by phunniemee at 8:10 PM on October 30, 2012 [1 favorite]

I'm not clear on why you need to go on the pill - to prevent pregnancy or because your doctor recommended it to deal with PCOS?

I was diagnosed with PCOS at the beginning of the year but using birth control to manage the symptoms was never discussed. I was actively trying to conceive at the time, but even after giving birth, hormonal bc has not been discussed to manage my symptoms. Since it sounds like the symptoms are not bothering you, why deal with the potential crazy of the pill?

For what it's worth, the long-cycle pills (Seasonique, etc) tended to be less crazy making for me than the regular pills, so maybe you can look into that?
posted by peanut_mcgillicuty at 8:25 PM on October 30, 2012 [2 favorites]

Best answer: How long were you on the TriCyclen? I was diagnosed with PCOS in undergrad (and like you don't have a lot of symptoms, just irregular periods and in my case slightly more body hair than I'd like) was put on the pill and I initially was a basket case, but only for a month or two while my body adjusted to the hormones, then I was fine. I do understand your hesitation, definitely don't do it if it's not something you want to put yourself through and don't let yourself get talked into something you're not okay with, but TriCyclen's the one where the hormones actually vary throughout the month, right? I'd suggest trying one that's a consistent dose.

Good luck, I can imagine how overwhelmed you must be feeling.
posted by SoftRain at 8:29 PM on October 30, 2012

I had a horrible, horrible time finding a BC that worked for me. I think medication affects me a lot and I really struggled with crazy mood swings on several types. I settled on something low dose and it's been working great for 10ish years. So there is hope!

Edited to add that I missed where you said you can't take a low dose. I still recommend something with steady hormonal content throughout the month, rather than something with different levels each week. YMMV.
posted by araisingirl at 8:43 PM on October 30, 2012

Best answer: I was on OrthoTriCyclen too and definitely experienced the crazy. My doctor theorized that the way that pill gives you different doses throughout the month was putting my system on a roller coaster and that a monophasic pill would help. Eventually I did find one that worked (Aviane). So yeah it's unfortunately trial and error to find the right one.
posted by bleep at 8:52 PM on October 30, 2012

If the Mirena (the hormone-containing IUD) is an option, this internet stranger definitely recommends it! I love mine. It's not squicky, really!! Yeah, the day you get it put in kinda sucks (mine was kinda like a very bad pap test with some cramping after), but if your experience is anything like mine the next 5 years are glorious, with no worries about birth control, no crazy hormone-related side effects, very light periods if any at all, no cramping (without hormonal BC i get crazy cramps...) and no stupid daily pill to forget about and then stress over. I'm about to get mine replaced, because my 5 years are up and I don't want to give it up! If you decide to have kids, just get it taken out.
posted by cgg at 8:53 PM on October 30, 2012

Best answer: Ortho tri made me nuts, too. Nordette was better for a while, but gave me breakthrough bleeding. Nuvaring makes me very stable and I'm really happy with it, but for various reasons i am looking at Mirena now.

There are loads of bc options, and different folk will have different side effects on particular pills. Tell your doc about the moodiness and what caused it, and they should be able to pick out a new pill which has less chance of causing that side effect but still helps with your PCOS and any contraceptive needs.
posted by nat at 9:06 PM on October 30, 2012 [1 favorite]

Echoing peanut_mcgillicuty: what is the reason you need to be taking birth control? Is it to prevent ovulation for PCOS-related reasons or just because you don't want to be pregnant?

It looks like Mirena (the IUD that contains hormones) doesn't always stop ovulation; it prevents pregnancy in a variety of ways. The Nuvaring delivers hormones locally and does stop ovulation but it's a different animal--you insert and remove a flexible ring yourself every 3 weeks and it stays in the vagina, not the uterus.
posted by needs more cowbell at 9:28 PM on October 30, 2012 [1 favorite]

I would highly suggest you go for a second opinion. You state that you have no hirisutism/acne, no weight gain, and are not pre-diabetic / insulin resistant. While there ARE cases of lean PCOS, you seem to not have the symptoms - and there is no ONE definitive blood test for PCOS. Did your doc say your androgen levels are high? There can be lots of reasons for that besides PCOS. After years of of being neglected, PCOS seems like the diagnosis du jour and from what you report I would be skeptical.

That said, the Mirena is in use and recommended by lots of PCOS women specifically because it thins the ueterus (which is a good thing when you menstruate less than 4 times a year!).
posted by PorcineWithMe at 9:40 PM on October 30, 2012 [1 favorite]

My friend was diagnosed with PCOS and instead of being prescribed bc pills was prescribed metformin, a med for insulin-resistance which is an issue in PCOS. Maybe explore that option?
posted by gnutron at 9:41 PM on October 30, 2012

I've been on BC pills for many years, and though I've never really had trouble with them, what I've taken for some time (lo-estrogen type pills. They come under different names but amount to the same thing, a lower dose of estrogen than lots of pills on the market. The brand I'm on currently is called, rather cheesily, "Cryselle", which has a made up, free spirited lady's quality to it. "Cryselle is free to bang anyone, anytime, with her norgestrel/ethinyl estradiol pills.....wheeeeee!") have been 100% trouble free for me. No bloating, no mood swings, nothing outside of not getting pregnant, so good on sexy, wild-haired Cryselle! I've been lucky with BC pills, admittedly. A good pal of mine who IS very sensitive to birth control pills, has had a very easy time with her copper IUD. I'm not sure if this is useful for PCOS, but worth looking into if BC pills make you feel bad. Good luck!
posted by but no cigar at 9:58 PM on October 30, 2012

BC pills make me crazy too, so does nuvaring. Mirena did not make me crazy at all, in fact it made me very... placid? Almost a bit dopey, definitely less good at creative things like writing but also less likely to stress out over small stuff. It wasn't dramatic but I noticed it and so did other people (Some people thought this was an improvement haha.) One weird thing I noticed was that I stopped dreaming while I was on it. I also developed a sweet tooth which I've never had. Sadly it also made me kind of fat because I was hungry all the time, in a "if I don't eat now! I'm going to pass out" kind of way" so that was a bummer.
posted by fshgrl at 10:57 PM on October 30, 2012

Response by poster: I would be going on the pill strictly to deal with the PCOS. I've happily used condoms for years, and never been pregnant (I don't think I get pregnant easily). My doctor's concern is that years of exposure to elevated hormone levels that go with PCOS increase the risks of some cancers. I got my period 3 months before my 11th birthday, and my mom/grandma didn't hit menopause until 58-60. That's a looooong time.

My symptoms include: obviously cystic ovaries, heavy periods, bad PMS/cramps, and in the last year or so I've started spotting and my cycle has been irregular. I have gained 20 lbs in the past five years, but since I started out on the low end of my weight range I'm in the middle – if I'd started in the middle, I'd be overweight. I also do have some body acne and minor body hair that I definitely didn't use to have (but isn't terrible).

I was only on TryCyclen for a few months at a time. It's possible I didn't give myself long enough to adjust. I didn't have a regular doctor at the time to talk me through it. I have already expressed interest in something monophasic. I am having a blood test done to check hormone levels, so maybe something more targeted will help too.

I can't find anything that mentions having cystic ovaries without it being PCOS. Ideas welcome.
posted by jrobin276 at 12:44 AM on October 31, 2012

If you were not planning to get pregnant in a year, I would highly recommend an IUD (best decision of my life). But that obviously isn't an option right now, though you should probably investigate it for post-child bearing BC.

What I want to emphasize is that everyone reacts differently to different BC. So there's a high chance that you'll find one that you're relatively symptom-free on, but it's certainly possible that any BC pill will give you huge mood swings etc.

I've heard the BC patch is better for mood swings because it's more localized than the pill. That might be a good option for you since you can just stop it when you start trying to conceive.
posted by DoubleLune at 12:49 AM on October 31, 2012

Oh, and another localized option is the Nuvaring. I had emotional side effects to that one, but apparently I was an exception.
posted by DoubleLune at 12:51 AM on October 31, 2012

Here's my anecdata - Nuvaring made me feel seriously insane, but I really love(d) progesterone only methods like Implanon, which I used for 10 years. The only side effect I got from Implanon was hair loss, which is why I'm FAM-ing it now. But I'd recommend Implanon. I suspect I only started to lose my hair because I was on it for 10 years without a break.
posted by nerdfish at 2:10 AM on October 31, 2012

I have definitely had different responses to different formulations of contraceptive - from physical symptoms to mood changes.

Oral contraceptive pills all have pretty much the same oestrogen analogue, but there's a half dozen different progesterone analogues used in birth control pills (not 100% sure if they're all on the market still, but you get the idea).

So if you have problems with a particular type of pill, make sure when you switch pills that you find one with a different type of progestin. All the steroids are very similar in chemical makeup and the fake progesterones can set off your other steroid hormone receptors to varying degrees - it just depends on how your body is set up.

Also some people have commented that long-acting preparations might be better since they are low dose - there might be some grain of truth in that, but anecdotally I had mood changes and other side effects on Implanon.

Hope that makes some kind of sense.
posted by chiquitita at 2:33 AM on October 31, 2012

Anecdata: I used to be on Dianette for years, which I believe is similar to Ortho Tri-Cyclen, and it certainly controlled my acne but I porked up and got relatively fat on it (for me - I used to be very skinny). My blood pressure was a bit high too. And I got melasma.

My doctor nagged me for years to switch to Yasmin, I resisted but finally gave in. I lost 14 pounds and my blood pressure readings are always amazing. My acne stayed under control, and my melasma lightened to near-invisibility.

Can't say either of them affected my mood all that much, but this is just to reassure you that yes, different brands of HBC really do have different styles.

Disclaimer: as far as I know, I don't have PCOS - just acne and unreasonable greasiness.
posted by tel3path at 3:23 AM on October 31, 2012

I can't find anything that mentions having cystic ovaries without it being PCOS. Ideas welcome

Cystic ovaries are extremely common (like almost all premenopausal women have them) and absent of other symptoms do no warrant a diagnosis of PCOS (in fact strange as it may seem ovarian cysts are not required to be present for a diagnosis of PCOS and you can have polycystic ovaries without having PCOS).

It seems from your post you've only had the scan but not the blood tests yet and the irregular periods are a new symptom? What other things has your doctor tested for? It seems to me that your doctor may be jumping the gun. Your doc is saying you should take birth control because of the elevated hormone levels - which he/she doesn't appear to have actually tested for yet?

Before making a decision I would first wait for the results of the hormone test and make sure they're actually elevated before agreeing to take a medication you don't really want to treat it. I would also look into getting a a second opinion. You have very few symptoms and the most indicative one is new - it sounds like you're in your late 20s - early 30s (if college was approx 10 years ago) so you've been menstruating regularly for 20 years give or take. I'm by no means an expert but the women I know with PCOS have symptoms since puberty even if they don't get diagnosed until they're in their 20s or 30s. I'm not saying you can't have PCOS, its possible to have the polycystic ovaries and the funky hormone levels and have few or no symptoms but that's not common and there are other things that should be ruled out.

FWIW, both my sister and I have PCOS and neither of us are on birth control.

It is my understanding that the biggest PCOS cancer risk is endometrial cancer but not just because of hormones (and if you're ovulating regularly then there is no increase risk factor there). Most PCOS sufferers are overweight or obese which makes them up to 10 times more likely to get it. Many also struggle to get pregnant, never being pregnant increases the risk 3 fold.

Have your symptoms gotten worse over the last 5 years - as you've gained weight? It could be coincidence and gaining 20lbs as you approach your 30s doesn't sound too out of the ordinary but PCOS and weight problems are closely linked - in a very circular way (weight increases worsens symptoms - which causes more weight gain). Although you're not overweight, perhaps your body has a lower threshold than average and will only function optimally at the lower end of the scale not the middle (its not like our bodies have BMI scales and as soon as we cross over that threshold they start giving us problems - its a continuum and the values used for thresholds are averages not absolutes).
posted by missmagenta at 3:51 AM on October 31, 2012 [4 favorites]

Most of the women in my family have had ovarian cysts at some point in their lives. None of them have had any of the other PCOS symptoms, and none has ever been diagnosed with PCOS. Data point.
posted by phunniemee at 3:56 AM on October 31, 2012

You do not need to go on birth control to tame PCOS. Get a second (and third, and fourth, if necessary) opinion by a doc who is aware of the existence of treatments other than this, and who is more flexible rather than assuming the role of dictating to you what you "must" do.

Many, many people have had good results by following a low-carb diet and faithfully exercising.
posted by parrot_person at 5:00 AM on October 31, 2012 [1 favorite]

Second opinion. Your symptoms don't scream PCOS to me--20 pounds weight gain over five years is negligible, especially if you're in your late twenties/early thirties and your metabolism is starting to change. As noted, cystic ovaries are common and not necessarily required for PCOS. You don't say how irregular your cycles are but the fact that that's a relatively new development also makes me skeptical of the diagnosis. And also as noted, being pregnant lowers the risk of cancer that your doctor is trying to lower with birth control.

The high possibility (for you) of crazy from pills to lower a risk of cancer that you're already going to try to lower in a year with pregnancy -- meh. I'd get a second opinion and resist hormonal birth control for now.
posted by peanut_mcgillicuty at 5:51 AM on October 31, 2012 [3 favorites]

Have you considered having hormones compounded for you? I take compounded hormones for HRT following my hysterectomy.

I have three hormones in one tablet that I take every evening. Finding the right balance involved getting blood drawn and actually looking at hormone levels to make sure I was balanced.

It's hard, but worth it. Low carb and exercise is also REALLY helpful.
posted by Ruthless Bunny at 6:37 AM on October 31, 2012

I sympathize, because birth control pills made me ragey. I didn't feel like myself at all, I was mad at everyone all of the time... It was miserable.

I had been on Ocella, Yasmin and Yaz before I decided to call it quits and got Mirena IUD. The idea freaked me out, too, but it has been a blessing to me. I no longer feel out of control.

I have PCOS and I use the Mirena, spironolactone, and Glumetza to manage my symptoms. So far, so good.

The only problem I've had with Mirena is that my skin broke out like a teen-ager. That's why I added the spironolactone; my skin is quite clear now. But, spironolactone can cause severe birth defects, so most doctors will not prescribe it without the patient being on birth control, and certainly not if the patient is intending to become pregnant.

If you're not already seeing an endocrinologist, please do. They are far better prepared to treat women with PCOS than OB-GYNs, in my experience. PCOS has cardiovascular implications and must be managed beyond "just take the birth control pills." Even if you want to just get a second opinion--go to an endo. The Soul Cysters message board is pretty good, too.
posted by FergieBelle at 7:04 AM on October 31, 2012

A nurse practitioner told me about 8 years ago that I was a "classic PCOS case" by looking at a range of symptoms I had (I've since had scans done and I have no cysts). But at the time, I was going on birth control anyway to prevent pregnancy and began on OrthoTriCyclen, which made me completely batty. Every time I switched to the third stage pills I became freakishly emotional, in that textbook way where you cry at cat food commercials. After about two months of these rollercoaster cycles, I switched to straight-up, old-school OrthoCyclen. It was wonderful for me. No moodiness (except on the 1st day of period), weight loss, clearer skin, and regular, predictable periods. I've been on it for about seven years now and am totally happy with it. Everyone is different — best of luck finding what will work for you!
posted by amoeba at 11:56 AM on October 31, 2012

If I remember correctly, I think that TriCyclen is one of the higher dose pills; you might consider asking your doctor for a lower dose pill (not low dose, just lower). I have PCOS and have been on Lo Estrin for about 17 years. It's not a miracle drug--it doesn't help with the hairiness, for one thing--but it does make my periods very light, regular, and pain-free, which was a big help to me. I was lucky and didn't have problems with it, but I know it's very, very common to need to try different ones before you find one you like.

My sister has PCOS and has never found a birth control pill she can tolerate, so she's on Metformin. So that's another option. (She also uses Rogaine for her hair loss, but I haven't felt the need.)

So you do have options. You don't mention having any symptoms, though, and will probably want to try to get pregnant soon, so I'm wondering if you need to take anything. Maybe you should wait and reexamine the issue after you've had kids (or if you have trouble getting pregnant).
posted by WorkingMyWayHome at 12:38 PM on October 31, 2012

I know it's a little disconcerting to get diagnosed with a complex disorder like this, but hang in there. Here's some basic info from an RD with PCOS.
posted by WorkingMyWayHome at 12:42 PM on October 31, 2012

It's definitely worth getting a second opinion, specifically from an endocrinologist rather than an OB/GYN. An endocrinologist is much more likely to treat with Metformin than birth control, and you may be able to treat this with diet and exercise, especially if you're relatively asymptomatic. In many cases (including mine), untreated PCOS is infinitely preferable to treating with hormonal birth control.
posted by judith at 12:10 AM on November 5, 2012

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