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 Post subject: Re: PCOS!
PostPosted: Sun Nov 21, 2010 12:24 am 
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morecuminthancumin wrote:
I've never had an ultrasound done. I have no idea if I have cysts or not. Despite the name, not all people with PCOS have ovarian cysts, and not all people with ovarian cysts have PCOS. In my mind, this calls for a more accurate name for the syndrome...

Big hugs to you, ashley! It sounds like your experience wasn't the best. I hope you get better treatment when your new insurance kicks in! If I were you, I would ask to be referred to an endocrinologist rather than a gynecologist (or both, but definitely the endo). Even though PCOS affects the reproductive system, it's actually considered an endocrine system disorder, so an endocrinologist will be better equipped to treat the actual cause.

Feel free to PM me if you ever want to! :)

Thank you for the support! I feel better after reading this thread, especially knowing that others have dealt with so many of the same symptoms I've had for a long time and didn't know how to explain. I will take your advice and ask to be referred to an endocrinologist.

Sarbear, the gyno I saw tried to push birth control on me too. Sometimes it feels like that's gynecologists' answer to everything.


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 Post subject: Re: PCOS!
PostPosted: Tue Nov 30, 2010 10:57 am 
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ashley wrote:
morecuminthancumin wrote:
I've never had an ultrasound done. I have no idea if I have cysts or not. Despite the name, not all people with PCOS have ovarian cysts, and not all people with ovarian cysts have PCOS. In my mind, this calls for a more accurate name for the syndrome...

Big hugs to you, ashley! It sounds like your experience wasn't the best. I hope you get better treatment when your new insurance kicks in! If I were you, I would ask to be referred to an endocrinologist rather than a gynecologist (or both, but definitely the endo). Even though PCOS affects the reproductive system, it's actually considered an endocrine system disorder, so an endocrinologist will be better equipped to treat the actual cause.

Feel free to PM me if you ever want to! :)

Thank you for the support! I feel better after reading this thread, especially knowing that others have dealt with so many of the same symptoms I've had for a long time and didn't know how to explain. I will take your advice and ask to be referred to an endocrinologist.

Sarbear, the gyno I saw tried to push birth control on me too. Sometimes it feels like that's gynecologists' answer to everything.


YES, I agree with the sentiment- it's so wonderful knowing that people are out there who get it, and know what I'm going through. It's only been within the last year that I've been comfortable talking to friends, family, and partners about it- I've always relied on the internet for emotional support.

I also had birth control pushed on me. At one point, the doctor actually convinced me to stay on them when I specifically asked to try something else, saying "we know what will happen if you go off...". I felt like I had little control/say over my situation- I was expressing interest in trying other options, and she was basically saying no.

I wanted to pop in with some good news- something is working for me! I've officially been off BCPs for six months, and I've been doing a low-sugar diet for about 3 months. I've also been taking DCI in the form of buckwheat farinetta flour for exactly 2 months.

Last year when I tried to go off BCPs, I didn't take any extra supplements and I was eating a lot of junk food. My period stopped after 4 months and I was removing hair like crazy. I broke out (acne) pretty bad, too. I consider that my "control"- what happens to my body with no treatment whatsoever.

This time, with the low-sugar diet and the DCI, my period hasn't stopped (I had a 41 day cycle at 5 months and then a 28 day cycle at 6 months!) and I actually have to remove hair less often than when I was on BCPs. My skin is about the same- not perfect, but not bad.

I'm pretty sure that the DCI is playing a major part in this, although the low-sugar diet definitely plays a role in my skin and my energy levels. There have been a few times when I ate a lot of sugar (once at VeganMania and once more recently) and I can totally feel the difference for about a week afterwards- I feel more sluggish and my skin breaks out a bit.

I'm really, really happy about this. I'd like to get blood work done soon to see if there's a difference compared to last year. If anyone wants more info on DCI, let me know and I'll send some out. My goal is not to push treatments on anyone, but I also think it's helpful to know what has worked for others!


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 Post subject: Re: PCOS!
PostPosted: Tue Dec 14, 2010 6:26 pm 
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Has everyone had their glucose and hormones tested? All of my bloodwork came back normal. But don't worry, my stache is cruising along at full speed.

I had mine tested a few years ago and was told that my ratios were off. THe one that was supposed to be higher was lower. I recently asked to have them tested again and was told the same thing that my mother was told over twenty years ago. There isn't any reason to test them because everyone's hormone levels are unique to them. Normal is relative. It will give them a number, but unless they know what amount of hormones make your specific body work the numbers aren't helpful.
I was put on metformin and the pill. The metformin was supposed to help regulate my cycle (which it did, we conceived no problem) and the birth control pill was supposed to help with facial hair. My OB said that once a hair makes the change from a normal facial hair to the coarser stuff, it never changes back. But she said taking a BCP would slow the process and prevent more from turning.


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 Post subject: Re: PCOS!
PostPosted: Tue Dec 14, 2010 6:32 pm 
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That is a great outcome! I've been on metformin (glucophage) for a few months now, and though we were able to conceive, my eggs weren't of sufficient quality to maintain the pregnancy, so we're moving on to more heavy duty interventions.

Shovel posted in the Playground that she took Angus Castus for PCOS, to good results:
http://en.wikipedia.org/wiki/Vitex_agnus-castus

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 Post subject: Re: PCOS!
PostPosted: Sun Dec 26, 2010 5:40 pm 
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Resurrecting the thread!

Can everyone tell me what they do (if anything) to bring their periods on on a regular basis?

My doctor (or NP) has me call her if I go three months without a period. Taking 10 days of progesterone doesn't work. Last time she had me take a week of estrogen, and then another 7-10 days of progesterone. Fortunately that did work. But now it's been three months and she's having me come in for another exam instead of the estrogen/progesterone again to "discuss options".

It makes me a little nervous. I am not sure if I should ask for any kind of specialist referral or what to even ask her. Any suggestions?

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 Post subject: Re: PCOS!
PostPosted: Mon Jan 17, 2011 12:36 am 
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Steph, I hope you got some help. I'm bringing this thread back in frustration because I still have not had a period. It's been over 4 months. This isn't technically the longest I've ever gone without having one, but it still seems like a really long time. The health insurance I was supposed to have by now never kicked in because my hours were drastically cut at work. I need to work a certain number of hours per month, and I'm not getting them. It's upsetting because I was so hoping to see a doctor about this. Now I just feel stuck.

What's weird is that every month or so I experience what I think of as typical PMS symptoms, but then my period never actually comes. My skin breaks out, I feel bloated and fatigued, and I want to eat everything in sight, etc. - but then nothing happens.

I feel so abnormal. It sucks.


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 Post subject: Re: PCOS!
PostPosted: Mon Jan 17, 2011 9:53 am 
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I take BCP. Previous Ob/Gyns have told me that as long as I have 1 period/year, I should be good. Although when I was younger, I went as long as 18 months.

Now with BCP, I'm a monthly girl.

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 Post subject: Re: PCOS!
PostPosted: Mon Jan 17, 2011 10:06 am 
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ashley wrote:
The health insurance I was supposed to have by now never kicked in because my hours were drastically cut at work. I need to work a certain number of hours per month, and I'm not getting them. It's upsetting because I was so hoping to see a doctor about this. Now I just feel stuck.


Can you go to Planned Parenthood and see a nurse practitioner there? They charge fees based on income scale, and really are very reasonable, and they give you discopunts on BCP as well. As Linanil says, BCP might be a way to get back on track. Otherwise if you don't want to be on BCP, metaformin has worked really well for me.

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 Post subject: Re: PCOS!
PostPosted: Mon Jan 17, 2011 12:44 pm 
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Tofulish wrote:
ashley wrote:
The health insurance I was supposed to have by now never kicked in because my hours were drastically cut at work. I need to work a certain number of hours per month, and I'm not getting them. It's upsetting because I was so hoping to see a doctor about this. Now I just feel stuck.


Can you go to Planned Parenthood and see a nurse practitioner there? They charge fees based on income scale, and really are very reasonable, and they give you discopunts on BCP as well. As Linanil says, BCP might be a way to get back on track. Otherwise if you don't want to be on BCP, metaformin has worked really well for me.

I've been to Planned Parenthood twice. Both times they just tried to put me on the pill, which I didn't want to do. I didn't know to ask about metaformin and they never offered it to me. I guess I could try again, but I'm sort of done with PP. Just getting an appointment is a huge ordeal and takes forever.


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 Post subject: Re: PCOS!
PostPosted: Mon Jan 17, 2011 12:47 pm 
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May I suggest finding another PP office? Preferably one in an affluent town?

We have two PPs near us - one in working class predominantly Hispanic Paterson and one in upper-middle predominantly white Montclair. I went to the one in Montclair because the people were great, they were great about giving you an appt. The PP in Paterson was extremely unhelpful.

Basically glucophage/metaformin acts as an anti-hyperglycemic; it reduces glucose thereby reducing insulin levels. It is prescribed to women with PCOS because the condition is caused by insulin resistance. Some women with PCOS respond well to glucophage in terms of losing weight and regulating their menses, but not everyone does. It has worked very well for me taking me to a 28 day cycle from an erratic one that was either months sans period or sometimes 1x in 2 weeks.

You can also try managing it through an Eat to Live type diet (Dr. Fuhrman told me his wife has PCOS but reversed it and was able to have 4 healthy babies using ETL).

Is there a reason you're not okay with BCP that you are willing to share? It regulated my cycle for many years with no side-effects. Its just now that we're trying to conceive that it no longer meets my needs.

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 Post subject: Re: PCOS!
PostPosted: Tue Jan 18, 2011 10:47 pm 
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Trying another PP is probably a good idea. I actually did go to one in an affluent area, primarily because it was easiest to get an appointment there. I called 4-5 others repeatedly and couldn't even schedule an appointment. The people at the one I went to were very nice, but not particularly helpful.

I'm not necessarily against BCP; I just feel like I'd rather avoid it unless it's really necessary. I just feel the need to explore my other options before I start taking hormones. I am definitely nervous about side effects. I'm happy to hear that it worked for you!

Eat to Live is a great idea, and I've been thinking about trying it. The problem is that my diet is already pretty healthy and very low in sugar and processed foods. I feel like if I could control this with diet alone, it wouldn't be an issue at this point. I will try, though.

Thanks for your thoughts on this, Tofulish. I appreciate the support.


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 Post subject: Re: PCOS!
PostPosted: Fri Jan 28, 2011 2:09 pm 
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PCOS is kicking my asparagus right now. Anyone know anything about PCOS and low progesterone/luteal phase defect?

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 Post subject: Re: PCOS!
PostPosted: Sun Jan 30, 2011 5:50 pm 
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I ended up going off birth control pills (I used Yasmin) because I kept on getting my period a week earlier than I was supposed to on the pills and it was weird and annoying. I have a regular period on Metformin.

I've gotten to the point where I really need to get my weight down. I'll go back to doing 3 hours of cardio almost every day in the spring. Weather and bike problems have kept me from riding all January. :(

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 Post subject: Re: PCOS!
PostPosted: Tue Feb 08, 2011 12:41 am 
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I am here to join the club. I brought a cake. It says, "nice facial hair, pretty lady."

So, my IUD sort of stopped my periods but I haven't ovulated but like once in two years and I thought that might a-okay because I wasn't having a period. Boy was I wrong. I have a large cyst hanging out right now. It is making my life difficult. Quite so. I am just glad it's not appendicitis. I am probably going to have my IUD out pretty soon and get on birth control. My gynecologist never really felt my ovaries lately despite me telling her I think I have a lot of androgens. Bwah!

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 Post subject: Re: PCOS!
PostPosted: Tue Feb 08, 2011 1:17 am 
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Ow.

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 Post subject: Re: PCOS!
PostPosted: Tue Mar 15, 2011 12:06 pm 
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I think I may be joining this party. I haven't been officially diagnosed yet, but I've been experiencing PCOS symptoms since puberty. Right from the beginning, I had very irregular periods. I've always been very overweight. The hair on my upper lip and my darker armpits have always made me feel super self concious. I was put on BCP when I was about 15 and that was that.
When I was in college, it had been a while that I had gone to the gyno, so I saw a doctor on campus. I got a notice from her saying that my FSH/LH levels may have indicated PCOS, but I ignored her because I never heard of PCOS and thought it was strange that this doctor saw something this one time, but my regular doctor had never seen anything after a whole bunch of tests.
Fast forward another couple of years: I break my leg. I'm in the hospital for two days before I'm able to get surgery done on it. Since I was confined to a bed for two days and on BCP, I developed a clot, it travelled to my lungs, it was a mess. I had no insurance for a while, so I just dealt with my crazy periods. Besides, with my clot history, I shouldn't go back on BCP.
Now I'm back on insurance and I told my GP about my crazy periods and she sent me for an ultrasound. She called me yesterday and told me that the ultrasound showed a lot of cysts and referred me to a gynocolegist. So now I'm piecing all my history together and it seems pretty clear that I have PCOS. Especially after reading all the stories on here. I'm seeing myself a lot in what you all are saying.


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 Post subject: Re: PCOS!
PostPosted: Mon Jun 06, 2011 7:33 pm 
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Hi everyone! I discovered ppk this winter, but never posted before. I couldn't believe my eyes when I saw this thread! I was so hopeful when I saw all the support you all are giving each other. I was diagnosed with PCOS in the fall of this year (FINALLY-after having symptoms since I was 12) and since then have been trying to educate myself as much as possible. My story sounds so similar to some of yalls; it's such a relief to discover that I'm not as alone as I thought! I've been pretty discouraged so far trying to find support or research or papers or anything on PCOS with vegan/vegetarianism, especially as I'm also trying to get my weight down, but I'm still hopeful, especially after discovering this thread. i hope everyone is doing well and staying healthy! :)


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 Post subject: Re: PCOS!
PostPosted: Thu Dec 06, 2012 5:22 pm 
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Thought I'd pop in and say hello to you all.

I started getting symptoms of PCOS when I was 13 and got told by my Dr that if I lost the weight it would go away. Got fobbed off like this for 7 years. Eventually, after three trips to a dietician who told my Dr to stop sending me and do her forking job, I finally saw an on call Dr who sent me for a blood test that afternoon. Well, would have been great, finally being listened to, but then the next day I had my first exploding ovarian cyst.

I've now been having regular periods for four years, been on Metformin for four years, and lost some of the weight. Since I became vegan 6 weeks ago I have lost even more weight, my hair has stopped falling out, the facial hair is less severe, I've stopped having constant pain/tenderness in my lower abdomen, and I feel better than I have in years.

Just wanted to share my story with you all. There's more to it (isn't there always) but just wanted to introduce myself to the other PCOS vegans


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 Post subject: Re: PCOS!
PostPosted: Wed Feb 27, 2013 6:35 am 
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I am in love with this thread, I find it so relatable. I felt like such a freak growing up, of course PCOS as we now know it didn't exisit as a diagnosis when I was a teenager, so all I ever get as a solution after inumerable blood tests from doctors was "your abnormal, that's just how it is".

From the time I was 13 I was on one or another birth control pill as we tried to find one that worked, solve my period dilemmas and the acne. The only success I have had with birth control was after trying all the pills, trying the 3-monthly injectable one was when I went on the 3-year implant.
It has given me more manageable periods, the acne got marginally better but tended to break out again before my periods. And then the stray facial hairs started multiplying and I just got hairer. :(

2 years ago I was diagnosed as diabetic, I was put on metaformin, and I switched to a Low GI diet, nothing major seemed to result with the diabetes but when I saw my doctor 4 months after starting the MF/LGI diet, I was all excited about the fact I'd had normal periods since starting the MF.
I was telling my doctor about the changes, and how I wasn't sure if it was actully related to starting to take MF.
My doctor was all like oh yes, PCOS. You know all those period/acne/weight issues you've always had and the facial hair is all caused by PCOS, we use metaformin to treat women with PCOS when their trying to get pregnant. Like it was so obvious and simple.

I think the biggest change has been moving from a dodgy vegetarian diet to a more wholefoods, low-fat, low-sugar & lower salt vegan diet. The change I saw just as I started to eliminate dairy for starters, way less skin breakouts.
To date I've lost 70 pounds and kept it off, something I've never had success with in the last 20 years. Or as one doctor told me when I was 15 all my period problems would be solved if I lost the weight but genetically that was nigh on impossible so my efforts should be on not gaining more. Clearly the guy had no clue as to how demoralising telling a 15 year old girl you'll always be fat was. I think that was when I kind of wrote myself off, why bother anymore?

It's good to know I haven't been the only one reading through this thread, I've learnt a little more. Hair loss talk peaked my interest, I lose about 5-6 handfuls a day in shed hair. Never given it a moment's thought, probably because my hair was so thick to start with it's not really made any noticeable difference.

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 Post subject: Re: PCOS!
PostPosted: Tue Mar 12, 2013 12:29 am 
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Has anyone had any success with natural remedies? My naturopath has me drinking spearmint tea, taking ovablend, using castor oil packs, seed cycling etc. I haven't been strict enough about it though :(


I'm so happy this thread is on here! My worst symptoms are irregular periods, and facial hair.

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 Post subject: Re: PCOS!
PostPosted: Tue Mar 12, 2013 8:41 am 
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Oooh! I like the idea of natural remedies. I used Metformin and acupuncture along with chasteberry/Vitex. I don't even know what ovablend or seed cycling is!

The Vitex worked well for me and itsBoiling! and both of us ended up conceiving despite our PCOS, so that maybe worth a look for managing some of your other PCOS symptoms?

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 Post subject: Re: PCOS!
PostPosted: Thu Mar 14, 2013 2:34 pm 
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I like the idea of natural remedies also :) Well in addition to my dr's recommendations. I am on Junel right now and I don't have any dx insulin resistance.

I am hoping that changing my lifestyle to vegan whole foods will help with my PCOS. I'm very very new to this and have been vegetarian since January 1 and I'm working on eliminating all dairy and eggs when I'm out with friends (it's easy to be vegan at home but so hard to travel and be with friends!). I also want to avoid soy.

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 Post subject: Re: PCOS!
PostPosted: Mon Mar 18, 2013 11:23 am 
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WOW, hello old thread! I didn't even realize this was here!

OK, so I was diagnosed a little over a year ago after 6 months of irregular cycles, ridiculous weight gain, 5 months of TTC with no success, and generally feeling like shyte. I suspected PCOS, and my family physician agreed and ordered the appropriate diagnostic work-up. Ultrasound and blood-work and assessment all positive for PCOS. I started on Metformin. I was referred to a fertility doc who trippled my dose and assured me that a substantial weight loss would reverse the insulin resistance and make me fertile again.

So after spending the greater part of the past year in denial, forgetting to take my meds, and generally just feeling sorry for myself (first-choice treatment: cake), I'm now feeling empowered again and have started re-vamping my eating. High protein, low GI veggies, very little sugar, no caffeine and nearly gluten-free. I'm down 7 pounds since Feb 1 (not much, I know, but it's a start), and started exercising once or twice a week. I'm conscious about taking my meds. I'm having (generally) regular cycles again. I'm determined to focus on every success, no matter how small. I see my fertility doctor May 1, so I'm hoping to have lost another 5 pounds before then.

I am in retrospect disappointed in my family doctor and my fertility doctor for not explaining PCOS to me and stressing what I needed to do to deal with it and the consequences of ignoring it. And it's not like I didn't ask; I remember flat-out saying "Please explain to me, on a cellular level, exactly what is going on with me that I'm not ovulating," and my fertility doc said to just take the pills and lose 50lbs. (That's the down-side of being a nurse, I guess... when your doc knows you're a health-care professional, I feel like they assume you know everything already or that you'll do your own research and be an expert within a week.) I also would have appreciated a referral to a counsellor or therapist or support group, or even just a heads-up that the emotional turmoil would begin before I even left the clinic, because I wonder if I had sought help when I really needed it would I have spent the last year hating myself. (I was so upset after that first encounter with my fertility doc that I went out and bought a bag of oreos and a pack of cigarettes - I felt completely hopeless and completely powerless, and regressed back into completely maladaptive behaviours.)

Anyway... here's to taking care of ourselves!

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 Post subject: Re: PCOS!
PostPosted: Sat Mar 23, 2013 4:33 am 
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serafinaemily wrote:
I am hoping that changing my lifestyle to vegan whole foods will help with my PCOS. I'm very very new to this and have been vegetarian since January 1 and I'm working on eliminating all dairy and eggs when I'm out with friends (it's easy to be vegan at home but so hard to travel and be with friends!). I also want to avoid soy.


This is me! Eating vegan at home is no issue, going out with friends is hard, although they've all been super supportive of my diet changes but I still find myself settling for vegetarian when I'm out for fear of becoming a total social pariah. We eat out a lot at Asian restaurants, so really it's just trying to dodge eggs there.

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 Post subject: Re: PCOS!
PostPosted: Tue Apr 23, 2013 8:11 am 
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Okay, I've officially had enough. I have had my period since March 21. That's OVER THIRTY DAYS. and it's still super heavy. Like overflowing my diva cup and staining my pants at 8:30 am kind of heavy. It hasn't been like this in years. I went to the gyno last week and she basically told me to wait it out and go to an endocrinologist and then we can see about starting me on metformin. But I'm just about at the end of my tolerance of this shiitake.
Has anyone ever had these super long awful periods? or do you have any advice on how I can cope with life when all I want to do is cry and eat chocolate? can I at least get some hugs?


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