And here is a quick diagram:
And another on insulin resistance:
Here is the abbreviated version of my particular issues:
- Few to no periods. I can go months at a time without, have a few, and then go without again. When I was 15 I had periods about every other month, and that was my "normal", but over the years I have come to realize being completely un-normal IS my normal.
- Recently new- periods that last for a month at a time. And then back to none at all. (Yay me!)
- Hair growth called hirsutism- face, stomach, hands, toes, and other weird places that is not very lady-like or becoming. My arm hair has even turned super dark.
- Acne and oily skin- and by acne, I mean, all over my upper body- front and back. It is so embarrassing I usually wear clothes that cover it up when I go out of the house because it is pretty embarrassing at 25 to be dealing with it.
- Depression symptoms and crazy mood swings.
- Weight gain- mostly around my belly area. I joke that I look more pregnant than the pregnant girls I know. It occurs slowly, but all at the same time. Every now and again, I wake up and have gained 5lbs for no apparent reason. In the past 2 months, I have gained 15 pounds, and OMG I feel it! It is absolutely the worst part of all of this, because no matter what I do- diet, exercise, more diet and exercise- IT WON'T GO AWAY! 150 used to be my normal.Then 155. Then 160, then for the longest time I was keeping steady at 163-165 by working my butt off. I am now at 185. Yes. I said it. Since fall I have bumped up to 185. I am now shopping in the plus sizes. (In college I used to wear a medium.) Based on my BMI I should be between 140-160. I can go on and on and on about the weight thing. The doctors of course tell me I don't diet and exercise and that it is my fault and is the reason for all of my problems. PCOS makes it extremely difficult to lose weight and the doctors don't want to provide any help.
- Sleep problems. If you ask my husband about my sleep the first thing he will tell you is I snore. OMG I snore. I am pretty sure the more weight I gain, the worse it is getting.
- Fatigue/headaches/fogginess. There are days I just want to sleep all day long. I can sleep for 12 hours and still have headaches and just can't get up and going. I feel like I need to eat for energy, but nothing can get me moving. I will crave carbs and sugars as a "quick fix" to stop the headaches and get energy. It is very hard to avoid them when your body is just not functioning and that is the only foreseeable fix to get through the work day. Sometimes the headaches are more like migraines. And then there is the brain fogginess. I can't think quickly, or I forget words. I know what the thing is I am trying to say, but I can't remember what it is called to say it.
- Breast tenderness
- Severe cramps when I do get a period
- Low libido- It is just not what it used to be. :'(
- Fertility issues. I'll be straight with you- I haven't taken any birth control since July 2010, and no, my husband and I don't use anything at all. I went to the doctor complaining about all of my pcos symptoms and she asked if we used any birth control and I told her none at all. She was all offended and wanted to know why. My answer: 1.) We are married, responsible adults,- why are you questioning me like I am some kid running around town? 2.)Yeah, we want a baby 3.) You can't get pregnant if there aren't eggs to fertilize 4.) Doctors just dumping me on birth control to "fix" the missing periods made the issue even worse than before I started. Birth control is just MASKING the symptoms so I stop complaining for now.
I am pretty sure the doctor about fell out of her chair. Meanwhile, I was calculating how much $$$ in birth control pills I would have saved myself over the years. (The answer was about $3000.)
- Oh, and here is another diagram:
- The Doctors (my actual conversations with various doctors):
- "Wait it out"
- When I was 15 doctors told me my irregular, every other month, periods was due to me being young and it "takes a few years to even out". At that point I had been getting them for 2 years, so I waited.
- "Maybe this is your normal"
- Not everyone has a period every 28 days. Some have longer cycles and some are shorter. So what about my sporadic, random, when-ever my body feels like it periods? "Well, maybe that is your normal" Pretty sure bleeding for 2 months straight is NOT normal.
- "You don't have to have a period every month. We can put you on birth control 'for your comfort' so you have a 'period' each month"
- She thinks I am worried about the not bleeding part. I am worried about the whole, um, NOT OVULATING part. Kinda hard to get pregnant if there is NOTHING to fertilize, dear!
- It was at this point where I told her I absolutely refused to go back on birth control. I was on it for over 7 years to "regulate" my periods. The longer I was on it the worse I felt. It was also when I started to take the birth control pills that I started gaining weight.
- "Birth control will settle your hormones"
- Totally not true. Crazy stuff started to happen after I was on the pills. The longer I was on them, the crazier the things were. I would have them change them, and they would tell me it would take "time" to see if they worked any better. Every three months I would go back in and say that things weren't better. They would say, "You just need to wait longer. Keep taking them!" Nope. Liars!
- "We don't see any cysts, so you're fine- but if you are still concerned, go see a specialist."
- I finally had a doctor send me for one of those internal ultrasounds because she STILL didn't believe me. "ALL of your previous tests were 'within normal ranges', but no one has actually looked for cysts." $200 later, they said 0 cysts. Pretty sure that was the biggest let down ever. I was convinced that would be my final proof, and that they would finally believe me that something was wrong. Needless to say, that same week I had the WORST period of my life. It was absolutely horrendous!
- "Oh, yeah, your Estrogen levels are a LITTLE LOW, but just a little, nothing to worry about."
- When I asked what to do next or how they were going to help me, the lady said, "Oh, well, again, like we said- you are fine- but if you are still concerned, you should go see a specialist. Just let us know where you are going and we will forward your labs." That was it. Didn't wait for a response or any additional questions. Just hung up the phone on me.
- "You need to diet and exercise"
- "Apparently you're not!"
- "Apparently you need more!"
- "I don't know what you are complaining about, you are just a little overweight."
- It is impossible to lose weight! OMG. I can honest to god live off salads and water and GAIN 5 lbs. The inability to lose weight is probably the most depressing part of this. The doctors link all of it to my weight- they tell me if I can lose a few pounds, everything will be normal. The problem is, PCOS is a loop. You can't lose the weight because your system is out of whack, but you need to lose weight to get it back on track. My family is outraged that none of the doctors will put me on metformin- not even to try it to see if it works. My mom and aunt are convinced that it will help significantly. (My mom is a nurse and my aunt has PCOS.)
- "Maybe it is your thyroid- oh, nevermind, guess not"
- Nope! Not that either!
- Under-active thyroid problems also run in my family.
- "Just because pcos runs in your family along with diabetes and thyroid problems, that doesn't mean you are at risk for any of that."
- Nope! No cause for alarm bells here!
- There is NO way this could possibly be connected!
- "I am afraid to put you on metformin because it is long term... but if you want to get pregnant, we can start you on clomid."
- Okay, metformin may have a long list of side effects- but quite frankly- I deal with a lot those on a daily basis anyways. Can't feel any worse than I do now, right?!
- Just freakin' TRY it! What is the harm in TRYING it?! I can always stop.
- If it helps get things moving, I can theoretically start to lose the weight and then I wouldn't NEED to keep taking it "long term".
- Clomid is FAR more dangerous to the body!
- The doctor clearly is not understanding. I want to fix the underlying issue of "something isn't right with my body". Why on earth would I try to grow a baby in something that is clearly dysfunctional?! I have the feeling it would just end in bitter disappointment, just like all the doctors appointments over the years trying to fix all of this mess. There is such a high chance of miscarriage with pcos to start with.
This is a seriously abbreviated version of my issues and hurdles. My next step is to just go to an endocrinologist. My aunt was only able to get her pcos diagnosed by skipping all the doctors who didn't know diddly and going to an endocrinologist. The good news is, you don't HAVE to have cysts on the ovaries to be diagnosed, but ob/gyns for the most part won't do it without. Specialists are expensive, and so I have been waiting until after the holidays to go. I still haven't had the "Low Estrogen" lead hashed out or fully addressed. My doctor won't touch it with a ten-foot pole because she does not feel it is low enough to be addressed. And she wants me to go back on birth control, which I flat out refuse to do because at least I am getting more periods now than I was when I first stopped taking it. I am not about to back track.
It still boggles my mind how little doctors understand female reproduction. And I go to FEMALE doctors! (Clearly, my theory of, "they are females, so they will understand me better" is not correct.) Yes, PCOS is a complicated thing because everything is all connected and it is a lot like "what came first? The chicken, or the egg?" The insulin, hormone and weight problems are all connected, they don't know which one is the causing factor. They estimate that 5-10% of females have PCOS and it is a growing problem. It is hard to believe that doctors know nothing about it! NOTHING!