Does anyone have PCOS but is not TTC?

[tlew12778]

I'm just wondering. I was just dx'ed and am curious to know how others are being treated for it.

My drs (gyno, GP and FH) all want me to start on a BCP called Diane. They all think that since we are not TTC that this is the best option.

I know that there are other options out there (diet, treating insulin resistance, etc.) but right now I am pretty sure I am going to try out this BCP (even though I had seriously unwanted side effects during the last 4-5 years that I was on BCP before I charted to avoid).

I'm curious to know what others are doing. Thanks!

[lil_geek]

I was told I had PCOS when I was 17. I was diagnosed based on ultrasound and symptoms only (so I wonder if that is actually it)

Anyway, they told me the easiest thing was to go on the pill. It would stop the pain associated with the cysts and would allow me to have 'regular' periods.

I can't say that I've ever noticed any side effects of the pill. I've been on it for 10 years, no weight gain (aside from university/lifestyle changes), no mood swings, no worse PMS, no sexual side effects......

Another thing... because I was so young when I was diagnosed, I was told that I could still 'grow-out' of it. And unfortunatly won't know until I TTC.

[Sarah051504]

I was dx with PCOS in 2000. It had taken over a year of monthly dr visits and switching BP pills to regulate my levels. Actually the BP alone didn't do the trick so my Dr also put me on Spiro. After a few months all of my "systoms" went away except for the weight gain. This past year I switched Drs and he added metformin to my list of meds. Since starting it I have lost about 20 lbs without exercising.

It’s amazing how many different parts of your body PCOS affects. Before I started metformin my total cholesterol was 228 with the both the good and the bad at normal levels but my triglycerides were over 300! After three months of metformin I had lost 15 lbs but more importantly, my total cholesterol was 200 with both the good and the bad increased and decreased accordingly but my triglycerides fell over 100 points! I just had blood work done again (6 months after starting met) and everything is still dropping. My total cholesterol is 173 with the both the good and the bad continued to increase and decrease, my triglycerides fell to around 178, still high but almost half of what they were when we started! I am actually looking forward to my appointment in Oct to see if they have continued to improve.

I just want to make one comment on BP pills. There are so many of them out there, all just slightly different, that I wouldn’t be to afraid to go on a different one then the one that made you sick. I might get sick with Diane and if you do try another one.

[tlew12778]

Thanks for the responese ladies :)

lil_geek - I had perfect cycles before the BCP. I started the BCP at 18 to both rule out endo as well as for contraception. Ironically my GP thinks that my prolonged use of the BCP has made my ovaries "lazy"... she said they got a little too used to resting and this is their response. I'm kind of totally annoyed that no one mentioned this to me before.

Sarah - Fortunately I am almost asymptomatic. I ovulated my first 7 months off the BCP with picture perfect cycles. The only reason they tested me for PCOS was bc I had an insane acne outbreak. I was at the beginning of my cycle too so I didn't suspect anything anov... but I'm still in the same cycle 55 days later :rolleyes:... I was not on Diane before, I was on Minesse (not approved in the US I think, but it's like Yasmin I think) so the side effects could be totally different. I will just have to wait and see. I was given progesterone to induce an AF so I can start Diane. I should probably do some reading up bc I have no idea what triglycerides are! How often do you have blood work and what do they test? Is this (various levels in general) something that needs to be checked on a regular basis?

[JLRenheos]

tlew
I was diagnosed last fall. I don't have the cysts on my ovaries, but I do have the other symptoms of pco. I have had annovulatory cycles for a long time now. My Gyno has suggested bc pills to me. As of right now, my Dr. just prescribes me an Rx of 10 mg. of Provera to jump start my af every 3-4 mos. each time. If I didn't take the provera, I wouldn't get my af at all. We don't plan on ttc until around this time next year or later.
What do you ladies think, should I go ahead & try out bc pills?

[tlew12778]

JLRenheos - Well, the thing is for me is that I was using charting to avoid as BC... and I can't use that if I have super long cycles (well I can, but that basically equates to using condoms all the time). Also, I had this one serious bought of acne that I really do not want to return. I literally will not leave the house looking like that. This is basically why I am willing to try out this BCP.

I guess if you induce an AF with provera, you side-step the endometrial cancer risk issue, but I don't really know how stressful this is on your body. You'd have to ask your dr. I had asked my GP (she is more into holistic medicine than my gyno) if I could take the BCP for 3-4 months then stop and see what happens then start it again if I don't ovulate and she said that would be way more stressful on my body than just taking BCP until we TTC. However, I had horrendous side-effects with the last BCP I was on and here in Italy, they only give Diane 35 as BCP for PCOS. So if I don't tolerate the Diane well, I think we might move onto something else... I'm not sure what though. I read that only 30% of PCOS women have insulin resistance issues so I don't even know if glucophage would work if you are not in this 30%.

Sorry for the tangent. My main concern with only having a progesterone induced period every 3-4 months would be that when it comes time to TTC, you will not be ovulating... so that would basically necessitate clomid I think. My drs are trying to restore my natural ovulation by putting me on BCP to "give [my] ovaries a rest" with the hopes that when I go off them, I will ovulate naturally.

[Sarah051504]

tlew12778 ~ My Re is not checking my cholesterol levels. It's my GP who's doing it. In my yearly physical she did a complete blood workup and noticed that they were high so she gave me food guidlines (which I haven't been following) and been checking to see how they are going. I'm the one who noticed the connection with the metformin (glucophage).

Just a comment on something you said to JLRenheos. I read that only 30% of PCOS women have insulin resistance issues so I don't even know if glucophage would work if you are not in this 30%.When I first got dx I wasn't insulin resistant, that was 5 years ago, so my dr didn't put me on glucophage. When my new dr ran blood work I was borderline IR so we decieded to go with the glucophage to prevent me from progressing any further down the IR path. Basicly I was told I wasn't yet but if I do nothing I will become. Now that just might be in my case and not an overall PCOS trend but something to think about.

[tlew12778]

Sarah - Good point. I need to ask my dr what she thinks should be monitored on a regular basis. I am guessing that cholesterol and glucose levels are probably good starting points. Aside from the fact that all women on BCP should be monitored for cholesterol actually...

[JLRenheos]

tlew -
I did have my thyroid & blood levels checked late *last* fall. Everything checkout within normal limits. I'm not diabetic. My dr. did mention metformin to me for when I'm ready to start ttc & something else. I thought that just because you don't get your af, doesn't mean that your still not ovulating.-Is this right? Please correct me if I'm wrong. I totally hear ya on the acne outbreaks. OMg, I didn't think that I'd still be dealing with this in my late 20's. Although, my outbreak has been pretty good lately. I haven't been watching what I'm eating, but I'm working out a ton. I'm sure that will def. help out with the pcos.
I was on Ortho Tri-cyclen around 10 yrs. ago for several yrs, but it gave me lots of legs cramps & spasms. Then I switched to Depo-Provera (the shot) for 1-2 yrs.. As much as I liked the initial idea of being put on Depo, I thought I was losing my mind. I thought I was pregnant almost every month. It took me *months* to get my af after being off of my Depo Provera shot. For the longest time now, I'm not on any bc.
How often should I go in to have them check for cysts on my ovaries and/or have a vaginal ultrasound? I just had one last early-mid fall.

[tlew12778]

JLRenheos I have no idea how often those things should be checked! I should probably ask my dr :rolleyes:. Re: ovulation and AF:
* If you ovulate you definitely get AF unless you are pregnant.
* if you don't ovulate, you could or could not get AF. If you do, it's not a true AF but "withdrawal bleeding". Essentially your endometrial lining reaches a threshhold and starts to break down on its own. If you don't, well then most drs will induce an AF with progesterone bc of the elevated risk of endometrial cancer (due to buildup of lining).

So... I guess everyone here is on BCP. I've run into one person on CC who is not on BCP with PCOS but she is "seeing what happens"...

Has anyone read The PCOS Diet book?

[PurpleRose]

Hi tlew,

I have PCOS, I was diagnosed last summer, and DH and I are not TTC yet. I am not taking BCP; instead, we're using condoms while I'm taking metformin and Avandia (I also have IR). I don't have normal periods at all though- mine kept being spaced further apart until I realized I hadn't had one for nearly a year (I was diagnosed a few months after this).

I refuse to start BCP until I see what my body will do on the medication. DH and I do want kids, but we're still young and not ready to TTC yet. I am charting, so I know I've only ovulated once or twice since being on the meds. I'm trying to see whether I'll have semi-normal periods before we ever start TTC.

I was on BCP for almost two years as a teen. After going off that, my periods never really resumed. I don't know that there was a connection, but I did notice it.

If you have any questions, I'd be happy to try and help!

[jnettie]

*Bump*

From our discussions in Charting to Avoid.

I've done some research, and I really think I do have PCOS, though my Drs. never seemed to think it was an issue. I had an ultrasound on my ovaries about 4 years ago, and from the description I was given by that doctor, it fits PCOS, yet I was lead to believe that it was "normal" and not a big deal. And this was from a fertility specialist.

My current Gyno didn't seem worried either.

Now, I read up and I fit most of the symptoms of PCOS. Nearly everything but weight gain and diabeties. I'd really like a doctor to take my health seriously for once. I just feel like if I'm not TTC, it's not worth it to them. :mad:

[jennylou]

jnettie - I'm sorry that none of your Drs are taking you seriously about this. Have you tried a general practicioner? Perhaps if you took the basic guidelines into them (b/c some might not have thought about pcos in years) and tell them you are worried about things that are associated with pcos as far as your health goes. For example, cholesterol and IR. You might find that the GP would be more concerned about your health. I think Gyno's aren't as focused on that - they're more focused on paps and pregnancies, kwim?

I'm not currently on anything for my pcos, nor are we really ttc. I probably should be charting, just to make sure my body didn't suddenly realize what it's supposed to do. But, with a 6 month old, well, I'm afraid I'd forget to temp!

[tlew12778]

Well, this is no guarantee, but I don't think you are IR. You are a skinny minnie! The cholesterol test is a good one to have in general and your GP can do that. I would also ask for basic hormonal testing (FSH:LH, free testosterone) just to see what they say. That is the first thing my drs did, then I went for an U/S. Now that you are charting, you have paper proof of your long cycles. Bring them to the dr with you. I also sent my charts to my dr so that she could see what was going on.

[jnettie]

Tif, that's the only thing that makes me think no. But you're a tiny person too! I haven't had a cholesterol test, so maybe there's something there.

I should go to a GP as well. Very soon I will have health insurance again (yeah, I've been living life on the edge!), and I can see a doctor.

[tlew12778]

Honestly my doctor wouldn't even test me for IR. She sort of just laughed when I asked her about it. But I had it included on a bunch of other blood tests I was having done so that's how I know.

A cholesterol test is standard when anyone is on BCP as well. But yeah, wait till you have insurance as the tests can be $$$.

[LauraPerg]

I was dx with PCOS in Jan. with IR. I'm not TTCing (although it wouldn't be the end of the world if I did get pg), but I didn't want to go on BCP. My dr. put me on 1000mg of met. (with a strong warning about getting pg) and so far nothing's changed. She told me to come back in 8 weeks if I haven't o'd and I definitely haven't, so I think she's going to up me to 1500 mg. I have a couple of questions for those of you on met. and annovulatory cycles:

1. Did met alone get you ovulating or did you have to go with clomid, etc.

2. I have been having some spotting each month but currently I've been spotting for 36 day with no signs of letting up. Has this happened to anyone else??

[linda_loo]

---

[jennylou]

I was dx with PCOS in Jan. with IR. I'm not TTCing (although it wouldn't be the end of the world if I did get pg), but I didn't want to go on BCP. My dr. put me on 1000mg of met. (with a strong warning about getting pg) and so far nothing's changed. She told me to come back in 8 weeks if I haven't o'd and I definitely haven't, so I think she's going to up me to 1500 mg. I have a couple of questions for those of you on met. and annovulatory cycles:

1. Did met alone get you ovulating or did you have to go with clomid, etc.

2. I have been having some spotting each month but currently I've been spotting for 36 day with no signs of letting up. Has this happened to anyone else??.
I possibly O'd once with met, the first month I took it, but if I did, it was very weak, based on temps. I need about 100 mg of clomid to get me going.

Some woman with pcos spot all throughout their cycles.

[LauraPerg]

Some woman with pcos spot all throughout their cycles.

Eek!! How annoying would that be! My dr. is putting me on provera to stop the spotting and hopefully get me back on track without clomid (she knows were not TTCing, therefore not in a hurry). I'm hoping this does the trick!

I think she's also going to bump me up to 1500mg of met according to my insulin levels today.

[tlew12778]

They don't give Met here. When I was dx'ed my GYN asked me if we wanted a baby yet. I said no and she said when we did, she would just put me on clomid. They don't really beat around the bush here I guess.

Have you tried adjusting your diet as well? When I was first dx'ed I was pretty determined to try a bunch of natural methods (once I found out I could not tolerate the BCPs I was put on - 2 brands, 2 months). So I bought this (http://www.ovarian-cysts-pcos.com/diet-inflammation.html) e-book and it's about 50% recipes. The recipes are good regardless of you use them for IR or not. DH is doing South Beach so it's convenient :).

[daisygrl]

I have PCOS and we've been TTC for five/six years on and off. Right now we're on a TTC break until the summer (trying to lose some weight to help w/ my PCOS) . My old obgyn's used to give me bcp to start AF every month, but this year they started me on provera for 7 days a month. I do take metformin so that *maybe* it will help start AF w/out the provera. (hasnt happened yet) My new obgyn is hopeful and wants to start on clomid again whenever we're ready. Long story short...for ME, my doctor keeps reminding me that losing some of my weight will go a long way to helping w/ AF, we'll see.

[tlew12778]

It took close to 10 days for AF to start for me after I finished provera.

[daisygrl]

Yeah, I am about the same...for me, it takes about a week for AF to come after I finish my last provera.

[SaphirimalMei]

Just popping in.

I have not yet been 100% diagnosed with PCOS. I have brought it up with my endocrinologist (I see him for hypothyroidism) I am symptomatic: irregular menses, not ovulating, pain during most of my cycle, weight issues, more hair on upper lip than i used to, etc... He asked me if we were planning on having any more children...I said no, and now he seems hesitant to do anything about the possibility that I may have PCOS except tell me to excersise more. I totally understand that that there is a correlation, but what a jerk!

For those that were put on Metformin (glucophage) did you have to "push" your doctor into it, or did they just magically determine that it was the best thing for you? What factors were taken into consideration before putting you on the meds? Are other meds helpful for reducing the effects of PCOS?

I just dont get why my doc would be so hesitant to chemically help me just because I am not TTC? Thanks for any input!

[tlew12778]

They should test your free-testosterone levels and give you an anti-testosterone. That would help with the other issues like hair and skin tags (don't know if you have those). Met helps with IR which will help with weight, but it doesn't help the other symptoms as far as I know.

[jennylou]

I have PCOS and we've been TTC for five/six years on and off. Right now we're on a TTC break until the summer (trying to lose some weight to help w/ my PCOS) . My old obgyn's used to give me bcp to start AF every month, but this year they started me on provera for 7 days a month. I do take metformin so that *maybe* it will help start AF w/out the provera. (hasnt happened yet) My new obgyn is hopeful and wants to start on clomid again whenever we're ready. Long story short...for ME, my doctor keeps reminding me that losing some of my weight will go a long way to helping w/ AF, we'll see.

First, it can take up to ten days after the last pill for provera to induce AF. Metformin isn't intended to help start AF, though. Metformin is a diabetic drug, used for pcos patients. Patients who are IR often find that it brings their sugar levels in line and all the other hormones line up and they start ovulating. That ovulation is what brings AF on.

Provera is a synthetic form of progesterone intended to trick our bodies into thinking we've ovulated. You might be saying, huh? In a natural cycle, after ovulation occurs, progesterone goes up. If the egg is not fertilized, progesterone will drop and the lining will begin to shed, starting AF. With provera, we raise our progesterone through a synthetic drug for so many days. Then we stop taking it and a withdraw occurs. Progesterone starts to drop and AF arrives.

After 6 years, have you and your Dr's talked at all about clomid? It's a drug that forces ovulation. Both of my pregnancies were the result of clomid. Losing some weight may help you ovulate, or it might not, but after 6 years, I'd be wanting some additional help - while I tried to eat healthy and exercise.

[daisygrl]

I'm sorry I didnt give more of a background on me *blush* but I have taken provera on and off for years (depending on if we were actively TTC or not) and my body is REALLY suseptible to it, so thats always good.

Every dr that has prescribed metformin to me does say it helps level everything out in my system and did in the past given me a few AF cycles on my own for the first time in my life *Yayy* (I did the monthly chart/temp) . So it has been a wonderful help in the past...like I said, we'll see ;) We moved and I was off it of for probably two years (per a dr's advice). Everyone's different I guess :D

A few years ago we went to an infertility specialist and did rounds of clomid and she was a wonderful dr down in Austin but we had to move. After the move we took a break...so yeah, we've done the testing (HSG) and the clomid etc. So, long story short I was diagnosed w/ PCOS over six years ago and we will try again this summer. Per the new dr we are going straight into clomid. :D

[calliope_muses]

Joining here as my endo started me on Metformin yesterday for I/R and PCOS symptoms. No pain, no irregular cycles, but the acne, hair growth, skin tags, etc combine with bloodwork made him decide to give it a shot. He's also treating me for Hashimoto's and has been monitoring my weight loss efforts. On my own, just with my thyroid meds and diet/exercise I lost 3 lbs over 6 weeks. He added Meridia to my routine last time and I lost 5 lbs over 6 weeks. The goal with Metformin seems to be to get my sugars in line so I can lose a normal amount of weight and hope that the testosterone levels out too.

We don't want to have children, so I'm a little concerned that if it's possible I wasn't ovulating before and begin to do so we'll wind up pregnant. I'm not on BCP - quite frankly, 6 pills a day is enough for me and I'm not interested in shots/patches/etc. So, condoms will continue to be our best defense. DH has been duly warned that this medication could change some things and that extreme carefulness is a must!

[tlew12778]

You could always chart to keep track of your cycle.

[calliope_muses]

You could always chart to keep track of your cycle.

I could - but I'm admittedly very lazy about charting. I gave a try a couple of times and never kept up with it. Of course, I guess if it's that important to me that we not wind up pregnant I'll get over my laziness, huh?

[jennylou]

I could - but I'm admittedly very lazy about charting. I gave a try a couple of times and never kept up with it. Of course, I guess if it's that important to me that we not wind up pregnant I'll get over my laziness, huh?

Hmmm, maybe chart a few cycles to see if you are ovulating and ovulating regularly?

[tlew12778]

If you start having more normal length cycles, charting is not that bad. Charting sucks when you have a neverending cycle bc you just lose interest in it. The other thing that I really enjoy with charting is not having a surprise period. I mean, knowing me i'd be wearing white pants and a thong that day :rolleyes:.

[ivansbabe]

Could I have PCOS? I'm confused. Right now my cycle is a little wonky. I'm not on BCP, just do temping to avoid currently. Every now and then I don't ovulate, and at the time of month I'm supposed to ovulate I begin to "bleed"..., kind of like a period but not quite. This happens maybe once a year...and it tends to happen around when I'm sick or stressed out.

The thing is when I first went off BCP it took about a good 6 months for my body to get back into working order. During that time I had a three month window of not ovulating. It's like I kept repeating the first half of my cycle. I got an ultrasound and it showed small "pearl" like cysts on my ovaries. A week later without any drugs I ovulated on my own and besides the one time this happens a year I haven't had any problems (this was 4 years ago). Could it be a mild case? I don't have a whole lot of the physical signs, besides maybe breaking out a little during that time of month. I know that no one is a doctor and they can't diagnose me, but it's frustrating when my cycle is off.

[tlew12778]

Have you had any blood tests done? The main thing with PCOS (in a lot of cases anyway) is too much androgen/free testosterone.

Bleeding mid-cycle can be normal, particularly if you are stressed or sick since that can influence ovulation.

Personally I have no had any symptoms since that one bought a few years ago (knock on wood). I had all the tests done though and it was very clear that that is what it was. Interesting enough I found out that the manifestation of symptoms is race related so I guess I am lucky on that end. I have no idea if I have it now and just do not have symptoms. It's not something that really goes away though...

You could try taking vitex to regulate your cycles and see if that helps.

[ivansbabe]

Thanks for the response! I think I had bloodwork done when I went in for this originally...you'd think they test it at that point but all my results came back negative.
I've never heard of Vitex...that stuff sounds cool, and perhaps what I need. Do I have to order it online or is it found at your normal vitamin/herbal supplement store?

[tlew12778]

You can find it at a healthfood store. It's also called chasteberry.

I take Fertility Blend. It has vitex in it plus various other vitamins. Basically I can't be bothered figured out the dosages so I just take that instead.