PCOS

[skeptic]

I've seen Poly-Cystic Ovarian Syndrome/Disease mentioned here and there throughout GG, and thought it'd be nice and helpful if we had a thread devoted to it.

Please share your story, your struggles, your successes, your treatment regimens, and your fears!

How old were you when you were diagnosed? How did you find out you have it? What has worked for you and what hasn't worked for you? Do you have any conditions that complicate your PCOS?

[jacksonbear]

I think I might have it, the main reason is because I've had "male pattern hair growth" (as they call it) since I was really young. I was supposed to have an appt w. an OBGYN but it's yet to be rescheduled -__- The only other symptom I have is some mild acne.

[sleep84]

Alright, this is going to be a LONG one
First, I want to link a couple of FB pages and groups that I follow and that gave me tons of info:

PCOS awareness https://www.facebook.com/groups/PCOS.Awareness/ Closed Group, requires acceptance.
PCOS Diva https://www.facebook.com/pcosdiva?fref=ts
PCOS support group cysters Unite https://www.facebook.com/CystersUnite?h ... ion=stream

Oh, SoulCysters.Net is a great forum online!

[sleep84]

This was my post in another section:

Re: facial hair.. It think it's one of those symptoms that either you can have or not have. Like the BMI problem.

I was chunky in the past, not really overweight but when I was a kid and in my teen years I definitely looked odd, at least to me. I've always eaten super healthy and exercised a lot, but I was heavier than I should have been, considering my lifestyle. I packed on weight like a man, in my mid section. Not really a gut, but wide waist, love handles, butt, thighs and a VERY full moon face. Plus, being kind of Keira Knightley flat. I knew that there was something weird going on.
But I've never even been overweight.

Excessive hair growth (on your body) and hair thinning on your temples are all common symptoms and are testosterone related. I do get the occasional dark hair under my chin.. and I do have to take care of my upper lip. I'm not really the 'mediterranean' kind but I am a brunette, maybe that's also why I have them.

[Fat Shark]

What is the BMI problem you reference? I have PCOS and I went through some weight loss but struggled to reduce my BMI, and it was very upsetting and frustrating. I would feel like I was doing something wrong. Unfortunately I went through some health issues earlier this year and gained back all that I lost plus more.

[sleep84]

What is the BMI problem you reference? I have PCOS and I went through some weight loss but struggled to reduce my BMI, and it was very upsetting and frustrating. I would feel like I was doing something wrong. Unfortunately I went through some health issues earlier this year and gained back all that I lost plus more.

I mean that being overweight (sometimes REALLY overweight) is a highly typical symptom of PCOS, but not every woman has it. You may be super skinny and have bad PCOS. Or acne. My skin is not flawless but I don't have acne problems, never had.

I have no idea if my emotional struggles are related to PCOS as well (I have environmental concurring causes as well) but I certainly fit a pattern. Depression/anxiety, eating disorders (because your body may need a hardcore regimen to be normal weight, not just a generally healthy one). Sleep apnea, snoring, dark patches of skin ( elbows, knees ), I don't have skin tags, I definitely have hair thinning, hairloss, excessive hair in places I shouldn't have hair
It's really hard to lose weight with PCOS. It's like you have to diet twice and work out twice as hard as anyone else...to get maybe half of the normal results. But we are warriors!! Yay!!

Has anyone ever tried ACV as a treatment? Like, you drink 2-3 tablespoons of ACV a day (maybe even twice a day) in water. That's supposed to lower the blood sugar level and help with the symptoms.

[Fat Shark]

Has anyone ever tried ACV as a treatment? Like, you drink 2-3 tablespoons of ACV a day (maybe even twice a day) in water. That's supposed to lower the blood sugar level and help with the symptoms.

I did it once and saw no results. Not sure if you are supposed to do it long term before you see the results, but I just can't do it.

[sleep84]

Has anyone ever tried ACV as a treatment? Like, you drink 2-3 tablespoons of ACV a day (maybe even twice a day) in water. That's supposed to lower the blood sugar level and help with the symptoms.

I did it once and saw no results. Not sure if you are supposed to do it long term before you see the results, but I just can't do it.

I've done it for a week now, I've seen no change, but I also don't have the exact right kind. I have an organic unfiltered ACV but it doesn't have "the mother of the vinegar" it's not cloudy, it's very transparent. We'll see, I'll try for a little while longer. I just HOPE that it doesn't damage anything else. I know that I have to be careful with my teeth, but isn't vinegar bad for iron levels?

[Forever5stars]

I have it. The main symptom was male hair growth patterns. Mainly excess facial and stomach hair (and unfortunately my hair is dark lol) and very irregular periods. My mom had it when she was younger so she was the one who suggested I might have it. I got diagnosed a couple of months ago-ish? As for treatment, I just finished my first month of Dianette, and I'm going to make an appointment with my GP after my third month, just to check I'm not getting any negative side effects etc. I haven't even had my period yet (despite being the 3rd day into my 7 days of being off the pill) and I'm sooo happy. Before I started taking it, I was getting 2-3 periods per month. Yes. Per month. Fun. Hopefully in a few months, the hair should be thinning too c:

[GoGoYuBari]

I haven't been diagnosed but I'm at least 75% positive that I might have PCOS! I too have excessive hair all over my body! Every morning I feel like I have to pluck, wax or shave something! It's so embarrassing, my chin and neck area is the worst!! I do admit I am over weight and my diet isn't the best. My period I've recently noticed is very irregular, according to my period app it was suppose to start 2 weeks ago. I've read that losing weight could help, guess I better get to it.

[justanotherhater]

Can someone answer some of my questions on PCOS? I think I might have it and I'm going to the gynecologist to get checked in a couple of days. What should I expect? do I need to have a pap smear as part of the process of diagnosing the problem? I know the main way to identify if a woman has PCOS is through a blood test, but would the doctor give me a pap smear anyway to check for other problems that might be causing me to have these symptoms? I'm really not fond of getting one

My period is mostly extremely heavy. It is regular but I get a ridiculously heavy flow. Is that a possible symptom?

[WhatTheFudge]

A pap smear wouldn't be done to check for PCOS. Expect a blood test and/or ultrasound.
If you're sexually active, it wouldn't hurt to have a pap smear.

Heavy flow can be a symptom, but doesn't necessarily mean you have PCOS. Have you always had a heavy flow? Usually women who suffer from PCOS have fewer or no menstrual periods so luckily you're not dealing with that!

[justanotherhater]

My biggest problem is that I started to notice that I started to develop hair on my breasts, stomach and face but the hair on my head is thinning. I have a history of diabetes in my family and I have symptoms of diabetes (example, I pee a lot) but don't have diabetes. I get checked every 6 months for diabetes. I think diabetes like symptoms and even diabetes could be a symptom of PCOS. I also started to gain weight. I've been having the same diet for a long time, and the level of activeness(is that a word?) hasn't changed one bit. I'm trying my best to lose the weight but it's becoming near impossible. I want to make sure everything is okay.

My period became extremely heavy and painful 3 years ago (I would literally vomit and pass out, that painful. It hinders my ability to do every day activities) before that, I wouldn't get my period for months on end. My period wasn't regular from when I first started menstruating at 9-10 until it became heavy and painful at 18. At 16, I hadn't gotten my period for over 4-5 months. It was the most late my period has ever been.

[sleep84]

Regular heavy periods are definitely NOT a symptom of PCOS but don't exclude it 100% either.
Thyroid issues and PCOS can be very similar and can be often mistaken or can be present at the same time. You can have hypothyroidism, or pcos, or both. This condition can vary SO much from woman to woman!
PCOS and Hashimoto's autoimmune disease (thyroiditis) go often hand in hand.
Check for Thyroid antibodies: http://www.drhagmeyer.com/hashimotos-th ... yroiditis/

A sonogram to your ovaries will tell you for sure (I think for sure, I don't know if it's possible to have PCOS...without cysts)
If your glucose levels are fine that's great! Insuline resistance and high blood sugar levels are associated with PCOS.

However, some women with polycystic ovaries may not have PCOS and some women with PCOS may not have polycystic ovaries. This is why this is not used as the only sign that you have PCOS. You must also have a menstrual abnormality (eg. irregular periods) and be checked for excess androgen (male hormones aka testosterone).
http://www.stopthethyroidmadness.com/pcos/

btw: I keep going with the ACV thing, but I notice no change at all.. we'll see.

[justanotherhater]

I guess you guys were right! It's not because of PCOS.

I went and got checked. We found out I have a different problem. We did the ultrasound first and we found the cause of my heavy periods. I have a thickening endometrial layer (not ovulating at the time) so I might have to go for a biopsy since it could be pre-cancerous cells/endometrial cancer. I'm looking at the things that could possibly cause it and I have none. I'm not in menopause, I'm not obese or overweight, don't drink alcohol, don't intake animal fat (vegan), not diabetic, etc. My doctor is not worried due to my age. He said that type of cancer rarely occurs in female in their 20s, but we could do a biopsy to be on the safe side. I don't think I should be too worried either!

[skeptic]

Thank you so much for all the helpful information and links! I feel like I don't really have much to add as everyone else was so thorough.

I tried posting my own story soon after starting this thread, but my phone was acting up and my text seemed garbled. Then I kept forgetting to post when I was on my computer. LOL

I have ovarian cysts, related insulin resistance, elevated testosterone and anovulation. I don't have dark facial hair, but I do have slightly thinning hair and hair loss at my temples. My periods were within a normal range even though I rarely ovulated. I learned I had PCOS when I was about 30 years old and trying to conceive with my husband. I found out so late in life because I was on birth control pills, which helped regulate my system and mask symptoms.

It took us over 1.5 years TTC our first. I had to increase my levothyroxin and lose 20 lbs to start ovulating naturally. I couldn't lose any weight until I was on metformin, partly because I had such a strict diet (little sugar and no simple carbs) because metformin was so harsh on my digestion.

We have sort of been TTC our second for over a year, but my cycles still haven't started because I'm still breastfeeding. I haven't had my period in THREE YEARS! I can't get help from a doctor until my daughter weans completely and I give my body time to adjust. It's so frustrating! I envy women who can conceive easily, especially while nursing.

I haven't been on metformin since I was pregnant. I have a feeling I will need to go back on it so I can lose more weight. I'd try ACV (apple cider vinegar), but I know my gastrointestinal tract and asthma won't be able to handle it.

[Fat Shark]

I've taken Metformin(or some version of it) on and off for years and have never found it does anything for me. All it does is make me sick to my stomach, so I've had to try varying dosages, brands etc. My general physician gave it to me to help with weight loss and pre-diabetes, I started seeing an endocrinologist this year who told me it was supposed to help regular my periods. It's never done that for me at all. So she's upped my dosage to twice a day. I don't know how much I'll have to end up taking.

I almost never get a period and I get so sick of going to my general physician who asks when my last cycle, me telling them I don't know, and them getting frustrated because I can't just give them a date, and me having to explain EVERY SINGLE TIME, that I have PCOS, even though it's in my damn chart. Grrrr. I get frustrated sometimes and just make up a date. When I'm going in for a sinus infection, they don't need to know my last cycle.

[WhatTheFudge]

I've taken Metformin(or some version of it) on and off for years and have never found it does anything for me. All it does is make me sick to my stomach, so I've had to try varying dosages, brands etc. My general physician gave it to me to help with weight loss and pre-diabetes, I started seeing an endocrinologist this year who told me it was supposed to help regular my periods. It's never done that for me at all. So she's upped my dosage to twice a day. I don't know how much I'll have to end up taking.

I almost never get a period and I get so sick of going to my general physician who asks when my last cycle, me telling them I don't know, and them getting frustrated because I can't just give them a date, and me having to explain EVERY SINGLE TIME, that I have PCOS, even though it's in my damn chart. Grrrr. I get frustrated sometimes and just make up a date. When I'm going in for a sinus infection, they don't need to know my last cycle.

Maybe you should note it down in your calendar or on your phone. That way you have the date, and it's not as frustrating.

I know that sounds bizarre, but it's really just the doctor getting a thorough history. Ideally, doctors should ask several questions in several catergories (past medical history, surgical, family, sexual, social...etc), even if you have something like sinusitis because you have history of PCOS...your GP might not always ask everything...and sometimes doctors, due to time constraint don't always ask everything too.

[kittykat]

I've taken Metformin(or some version of it) on and off for years and have never found it does anything for me. All it does is make me sick to my stomach, so I've had to try varying dosages, brands etc. My general physician gave it to me to help with weight loss and pre-diabetes, I started seeing an endocrinologist this year who told me it was supposed to help regular my periods. It's never done that for me at all. So she's upped my dosage to twice a day. I don't know how much I'll have to end up taking.

I almost never get a period and I get so sick of going to my general physician who asks when my last cycle, me telling them I don't know, and them getting frustrated because I can't just give them a date, and me having to explain EVERY SINGLE TIME, that I have PCOS, even though it's in my damn chart. Grrrr. I get frustrated sometimes and just make up a date. When I'm going in for a sinus infection, they don't need to know my last cycle.

Maybe you should note it down in your calendar or on your phone. That way you have the date, and it's not as frustrating.

I know that sounds bizarre, but it's really just the doctor getting a thorough history. Ideally, doctors should ask several questions in several catergories (past medical history, surgical, family, sexual, social...etc), even if you have something like sinusitis because you have history of PCOS...your GP might not always ask everything...and sometimes doctors, due to time constraint don't always ask everything too.

They also might have to put it into the computer, but in a set format like mm/dd/yyyy so they probably get frustrated because there's no way for them to bypass it. It happens at the hospital a lot, so like Fudge said, make an estimate, and then always go with that so there's less frustration all around.

[Fat Shark]

Yeah, I never thought about writing down the date. Duh. I guess I could do that. I guess because they happen so infrequently it just never occurred to me. I don't know why I said it's the GP who ask, it's the nurses. Then they give me weird looks when I explain the PCOS. I don't know why that is, since it's a common disease. Or maybe I just think they do. LOL.