Experience with PCOS?

[RoxMonster]

PDQ

Thank you all for sharing your experiences!

[yaga]

I was briefly on metformin a few years ago. I have PCOS but not insulin resistant. However, in some women, it (metformin) can help regulate ovulation and it was a trial to see if it would help me or not. It did not, so I stopped taking it (my exH and I later pursued fertility treatments when TTC, we skipped trying on our own because I don't ovulate thanks to PCOS).

However, I did have a MUCH easier time losing weight than any attempts in the last 5 or so years. I made an effort to avoid high carb foods, so I think that helped and also helped me avoid some of the GI side effects. I'm actually going to bring up maybe going back on it to my endocrinologist in November because I'm having a really tough time getting the scale to budge.

I've likely had this my entire life, but my period was regulated by the pill. I will be on the pill indefinitely because of the risks of essentially unchecked building up of the endometrial lining. I'm fine with that because I also have endometriosis and it helps keep those symptoms in check. It's hard to think about having to take daily medications indefinitely, but I got used to it. Some parts of my body don't work without a little help and it will make me healthier in the long run.

[pierogigirl]

My Metformin does was gradually increased to its current dosage to try to minimize the gastro side effects. I now take a higher dosage twice a day instead a lower dosage of 3 times a da. I have not really noticed, for me, that any food is better or worse, but I would expect some diarrhea. I have never needed a pants person (I've always had enough time to get to a bathroom, even if I had to wait a bit). I am also on bp meds and my cycle is just as f'ed up on Metformin as off, but I am done having kids, so I don't miss my period.

[RoxMonster]

Yes, she told me to take a half dose of the Metformin for the first month and then go up to the full dosage.

[wanderingback]

Sorry that you're a bit bummed.
I will say, and I don't want to go against your doctor's advice, but not all patients that I've diagnosed with PCOS have had to be on metformin or metformin for life.
PCOS is a multi-factorial condition and you can kind of be treated "as needed" based on if the patient is having any symptoms and their goals.
So if you're insulin resistant now, so your doctor put you on metformin, that does not mean you'll always be that way.

I actually just had a patient transfer for me from a new state. She has PCOS and had stopped her metformin about 6 months ago because she hadn't gotten around to finding a new doctor. She said she has lost about 20 pounds in the mean time. So I did a bunch of lab work and in discussion with the patient we decided that she didn't need to go back on metformin at this time.

So I just want to give you a little bit of hope. Obviously I don't know your medical history, but I have several patients with PCOS that aren't on metformin.
One suggestion is maybe meet with a registered dietician to go over things with them. They can also give you suggestions if you find that the metformin does cause some GI upset. Best of luck to you!

[sproctopus]

I have insulin-resistant PCOS and was diagnosed at 17 (I am 36 now). It's fairly severe (acanthosis nigricans, hirsutism, no period). I have taken metformin on and off since diagnosis. I sometimes went 3 years without a period.

I dont take metformin any longer. What helped me was losing weight-- which is hard to do with PCOS. I did Weight Watchers and lost 70 lbs 2 years ago and have kept it off. I did also have a baby, which can help reset hormones, but I was only able to have him because I lost enough weight to start ovulating again. My periods are regular now (for me, every 35-ish days). I dont take metformin and havent for years. It does have the side effect of weight loss, for some, and that helps the PCOS. If you want to chat more, feel free to PM.

[pugz]

I have PCOS but am not insulin resistant. I tried metformin once but the side effects were awful. I couldn't work when I needed to be in the bathroom constantly. I don't get the cysts or the facial hair or any of that, my primary issue is that I don't ovulate on my own. So since I'm off birth control now I have to take progesterone 4x a year to make my body have a period. My OB said letting my uterine lining just build up without periods could put me at higher risk of uterine cancer. I am done having children. Most of the people i know on met are either TTC or are pre-diabetic.

I listened to some interesting podcasts recently about the issues with the low card "PCOS diet" that everyone seems to recommend. The research behind it isn't great. Check out the Love Food podcast episodes from January 2018. Also Food Psych podcast #199.

You can always get a second opinion. Metformin + low carb diet seems to be the thing lots of folks prescribe, but I don't now that it's actually supported by current research. Obviously everyone's body is different.

[tiptoetulips]

I have PCOS. I’ve been on Metformin for almost 5 years. I had the Nuvaring and when I quit using it I was completely annovulatory- could go 100+ days without a period. I started on met at 500mg and took it MUCH slower than recommended for going up a dose and I’m glad I did. They suggested upping the dose every 2 weeks and I did it about every 4-6 weeks. If I would have jumped every 2 weeks I would not have found the dosage that was right for me and lead to ovulation and balanced hormones. I got to 1000mg and that worked my cycles were about 35 days long. Thinking I was headed in the right direction I upped to 1500 my cycle quit, weight loss continues rapidly dangerous, and my hair started falling out- I did not tolerate that dosage well. Had I not slowly dosed up I would have assumed it wasn’t right for me.

The gastro side effects were not pleasant at all and I had to make some major diet changes low carb being the biggest. I also lost around 20 lbs and managed to get pregnant twice (1 early loss 1 carry to term- stayed on met the whole time). My endocrinologist has lowered me down to 750 because after delivery with breastfeeding my weight went dangerously low again. I’ve decided to stay on it because I may TTC in the next year or so and didn’t want to go through going back on it- my diet has pretty much gone back to normal. I do have to watch pastas and rices sometimes. If I were better about eating right and exercising regularly i could probably go off it.

[pugz]

also I started working with a registered dietician this year trained in intuitive eating and she has given me great tips. An anti-diet approach is one way to deal with PCOS, you don't have to diet. Dieting doesn't work for 95% of people and weight cycling can actually do a lot of harm to your metabolism and make things worse.

[tarajane]

I have PCOS. I handle the extended release version metformin a lot better.

[RoxMonster]

Extended release is what I have!

[pooh8402]

I have PCOS too but not insulin resistant. I was on metformin only while TTC, and stopped taking it after first trimester both times I conceived. So not everyone with PCOS needs metformin.

I took the extended release. I started at 500 mg daily at bedtime for like 2 weeks, then 1000 mg daily, then 1500 mg, then 2000 mg. I only took that highest dose when I was actively cycling, because the GI effects were just too much for me to handle for longer than a few weeks. I took 1000 mg between active fertility treatments, and that was my sweet spot to have cycles about 30-35 days long.

Now? *shrug* I have no idea what is going to happen since I haven't gotten my period back since having my younger child. I'll just wait and see if my PCOS needs managing or if I'll be able to deal with symptoms on my own.

[atexan]

Another PCOS-er here, diagnosed at 15 due to hirsuitism. I took Metformin ER while TTC. I had to combine it with a low-carb diet but was able to regulate my cycle and have 2 kids. I did not have GI issues but many/most women do.

Before TTC, and after kids up to now, I am on BCP, spironolactone, and meds for cholesterol and depression (other fun PCOS symptoms).

Even though I don't show as insulin resistant on testing, there's some literature that suggests all PCOS women have issues with insulin. Research is lacking though because women's health. My body responds really well to low-carb. But I fucking hate it so I only do it for short amounts of time.

[pooh8402]

Oct 22, 2019 21:04:37 GMT -5 atexan said:

Another PCOS-er here, diagnosed at 15 due to hirsuitism. I took Metformin ER while TTC. I had to combine it with a low-carb diet but was able to regulate my cycle and have 2 kids. I did not have GI issues but many/most women do.

Before TTC, and after kids up to now, I am on BCP, spironolactone, and meds for cholesterol and depression (other fun PCOS symptoms).

Even though I don't show as insulin resistant on testing, there's some literature that suggests all PCOS women have issues with insulin. Research is lacking though because women's health. My body responds really well to low-carb. But I fucking hate it so I only do it for short amounts of time.

My RE says the same, and I believe she is an expert on PCOS. Her research the last few years has been how diet and PCOS are linked. She advocates a low carb, low grain, low dairy diet (like really low dairy... an ounce of cheese a day and that's it). It was really tough and I hated it.

I also have high cholesterol, but believe it or not, it is not related to my PCOS. It's just another genetic quirk I have. My body kind of hates me.

[Smurfette]

PCOS with IR here. I just started taking metformin again last week. It has definitely caused some gastrointestinal issues, but I also have IBS and am used to it.
I've read a couple articles about PCOS being something we are born with, that being said, I am not sure of how credible it is. Dont blame yourself, it is treatable.
I had tried all of the diets and the scale just wouldn't budge. My last resort was to see a weight loss management doctor and I lost 60lbs with him before getting pregnant. I dont recommend doing it this way because it can wreck your metabolism. It was great for me, but I was also about to seek out weight loss surgery. I maintained during pregnancy, but breastfeeding effed that up big time.

[fumbalina]

I have been on metformin multiple times. I have PCO, diabetes, and hypothyroidism, so I end up with different solutions over time. The first time I really did not have too many side effects. It did give me gas, but not the intense stomach issues that are common with it. The second time was recently and it did cause some gastro issues, but those I could have handled. I quit taking it because it created a huge amount of anxiety that I could not deal with. I could not function for more than an hour or so without crying about something stupid. My doctor did change it to another medication but he also stated several times that anxiety is not a side effect. However, I managed to forget to take it one single day, the anxiety went away, I started taking them again and it came back, so even if it is not listed, it was definitely something that affected me.

[boymomof2]

I have PCOS. I had the fatigue, facial hair, weight gain,and cystic acne. I was able to control my symptoms but limiting carbs that fuel it because met gut is awful. My bloodwork would always come back normal but low end of normal. My endocrinologist is who diagnosed me with PCOS and later confirmed by ultrasound by my GYN. I also discovered my chronic fatigue came from being on birth control. Once I came off of it, I no longer eat everything in sight and also have my energy back. I use to get chronic cysts on my ovaries that would rupture all the time in my early 20's. Now they come and just chill on my ovary but not causing any major issues.

[cuadrado]

I missed your original post but I am gathering it's about metformin. Not all women need Metformin but most women with PCOS have underlying insulin resistance. So I would recommend getting fully evaluated for insulin resistance, which usually involves an oral glucose tolerance test (if you meet certain criteria). Many of my clients have normal A1c and fasting blood glucose levels but they have elevated fasting insulin levels when they do the OGTT. It's good to know these numbers and monitor them yearly so that you can know if you're IR and if it's progressing. Metformin can be adjusted or you can try the extended release one if you haven't already. Ovasitol and Berberine are supplement options as well depending on your symptoms and what exactly is going on with your PCOS.

I'm a dietitian and I specialize in seeing women with PCOS. I have been pretty disappointed with the medical care my client's receive. I have so many PCOS clients who just sit on my couch and cry because they feel like they cannot find a provider who understands what they are going through. Most of the advice they receive is to follow a low carb diet, lose weight and take metformin. Most women have a difficult time sticking with a low carb diet and studies don't really show that is an effective long-term treatment for PCOS. As for weight loss, it's really difficult for women with PCOS to lose weight. There are many behavioral modifications and supplements out there that can increase fertility and improve PCOS symptoms independent of weight loss. If you want some good online resources then I would recommend looking at the PCOS Nutrition Center website (all evidence-based) or as pugz recommended - Julie Duffy Dillon's podcast is great!

[picaflora]

I missed the OP, but thought I'd share my experiences as well.

I never had super regular periods, but doctors seemed to always have a reason for it (teen - so regulating hormones, being super skinny/stressed in college, etc). I did seem to get it every 60ish days though. I am 5' even and have weighed anything from 110lbs to 160lbs - and have had issues with my cycle and other PCOS symptoms across the board regardless of my weight. I am borderline IR, have insane amounts of facial hair, and now I'm lucky if my period shows every 100 days without assistance from progesterone. I also have the tell-tale cysts, that we discovered when TTC. At this point I don't ovulate without meds. 

I've tried met off and on, but I always get TERRIBLE GI issues. Like - have to work from home the first two days bad, even starting off on a low dose. I actually like the non-ER pills better, as I will even start my first couple weeks with half of a 500mg pill. I very slowly increase up from there (think adding 1/2 pill every 4-6 weeks). It took me awhile to learn that I do better with smaller doses throughout the day vs all at once. I also add a fiber supplement to... lessen the GI impacts as much. I lost weight at first, but I put that more on the GI issues.

Something that I learned recently that you may want to be tested for your Vitamin D levels. Apparently PCOS can seriously deplete vit D, and you may or may not notice. Because vit D helps regulate your mood, low vit D can also cause issues with anxiety/depression. I discovered this when talking to my PCP about going on an SSRI, and now we're working on getting my levels back up too.

[pugz]

picaflora yes to Vitamin D! Really so many people are deficient if they aren't spending time outdoors every day. My husband takes it year round since he is in an office with no windows. I take it from November-March when it gets dark early

[pooh8402]

Oct 23, 2019 11:30:43 GMT -5 pugz said:

picaflora yes to Vitamin D! Really so many people are deficient if they aren't spending time outdoors every day. My husband takes it year round since he is in an office with no windows. I take it from November-March when it gets dark early

I need to restart mine. Years of working in the hospital has made me deficient. I know I was deficient 3 years ago but have fallen out of the habit of taking my supplement. At least I drink a glass or two of fortified milk every day?

[atexan]

Yes, I am also vitamin D deficient. I take 3000mg a day. Also in an office with no windows.

Low carb and metformin were good for weight loss and ovulation for me. We're done having kids so that's irrelevant. I'm working on losing the last of my "baby weight" (my youngest is almost 3) but I'm only in the upper range of normal BMI so weight is not really a huge issue for me either. Low carb and/or metformin did jack squat for my hirsutism which is the only PCOS symptom I care about. BCP and spiro help a little, so that's what I take.