I have written this out before, and am just copying it since it is very long. Sorry if that's a no no. I've never accepted the PCOS dx (you'll see why) but at this point I am desperate to get this under control. And I cannot have another workup with a doctor because I cancelled my health insurance when I had a sick and hospitalized child and the money had to be filtered elsewhere. So I am going to planned parenthood for a pelvic and birth control, but that's all I can do right now.
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Here is my beef with PCOS. It's a catch all. And it's already surpassed gluten intolerance and is edging up on ADHD as the most overdiagnosed 'syndrome' out there.
I WAS diagnosed with PCOS about four years ago. I thought it was three, but looking back through old records, it actually was closer to four. At that time, no one had ever heard of PCOS, including me. Even the doctor was hesitant because she'd never seen it before.
But here's the thing- I don't fit the profile. Well, I might now, but I didn't then. I started seeing an endocrinologist for unexplained weight gain. I was a swim coach, I rode my bike miles each day with the dogs, I was very active and I ate almost nothing. I just was never hungry. And yet, I started to gain weight. My doctor wanted my thyroid checked, so off to Dr. Lee I go. Thyroid came back fine, three times. Then she suggested I keep a log of everything I ate, so I did. And it was, oh, maybe 1200 calories a day max. Coupled with lots of physical activity. And still I gained weight. So she said I must be sleep eating, and to catalog food before bed and in the morning. Nope, not sleep eating. So she said I wasn't eating ENOUGH and she wanted me to eat 1800 calories a day and I couldn't. I felt sick to my stomach all the time eating that much. So I averaged about 1500 and still kept gaining weight. She wondered if I had Cushing's disease, so she tested that and ruled it out. Though she did say I may have Cushing's syndrome, which is different. However she never prescribed anything for it. She tested my blood sugar and it was fine. She said that I might be insulin resistant, which made no sense to me. Finally, she said I had PCOS. What my ovaries have to do with insulin I have no clue. I didn't really buy it, and I asked her about it and she said she couldn't be sure because it was fairly rare. Then out of the blue (seriously, out of the blue) she retired and transferred all my records to another doctor. I never saw him, because at this point I was convinced that they couldn't help me.
But here is why I doubt it- PCOS is, to my knowledge, a disease almost exclusively in overweight women. Now, I am overweight now, sure, but I wasn't then. In fact, I was probably a bit underweight. And I gained over 100 pounds in less than a year on a low calorie/high activity diet. I'd lay in bed and cry because I didn't know why this was happening and I was so embarassed. I went through a point where I barely ate at all, trying to starve myself thin. Still didn't work.
And this is why the PCOS theory never quite washed with me. I've never been a fat person. In fact, in my early years of irregular menstruation (because I've never been regular) it was suggested that I wasn't regular because I was underweight and didn't have enough body fat to menstruate.
I started menstruating when I was eleven. I had about 3 periods with really heavy flow, and then stopped for about 5-6 months. After that it was every 2-3 months until I was maybe 15 when I stopped again, this time for about 6 months. When it started again, I was bleeding for about two weeks. Then I began my first round with birth control and it did nothing. So I took two months of live pills followed by placebo and occasionally bled, but not always. After a few months I gave up, only to give it a go again a few months later with nothing. When I was 18, I stopped menstruating for a few years. YEARS. Then I started up again, every four months or so. Then I was super duper regular for a year or so, before my partner got pregnant. Then nothing. Nada. Nothing at all. She went into labor and I started bleeding. The baby wasn't born and I dried up. Finally when he was born at 43 weeks I started bleeding and it was red death for a month. Then nothing for another 8 months or so.
The past 5 months, I have bled very heavy for a few days, then lightly for a few, then heavy again, then 2-3 days with nothing, then really heavy for a week or more, then spotting, then maybe 5-6 days before starting again. Sometimes red, sometimes black, always heavy. And when I say heavy, I mean an overnight pad in two hours tops.
I estimate that in the last five months, I have been period free for about 20 days total. It's like my cycle is completely reversed, 28 days on and 7 off! I know this is a bad bad thing. I get that folks! I've been threatened with a D&C before, and had one scheduled at one point before deciding I didn't need it. But I had a gyn tell me years ago that this is where I was headed, that one day I would start bleeding and not stop until I was in the hospital. Psychic *****.
So, today I estimate is day 28, if you count the little 2 day breaks in between. It's annoying more than anything at this point. And gross. And, yeah, slightly troubling. I have ten days until my appointment. I hope and pray I am blood free by then.
So, care to diagnose me anyone? And since you all know more about PCOS than I do (not hard since I refuse to actually look into it because I am dumb like that) can you shed some light?
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So... any advice? I am bleeding ALL THE TIME now. It won't stop. I'm tired, I'm bruised, I'm sick of wearing underwear to bed. I've always been off, but I have never bled for months on end before. And the breaks I get between are less than a week, and there is normally some spotting going on. So I have pretty much been on my period for 5 months. Is it possible to menstruate to death?
First of all I want to say Welcome to SC.
I do not agree thet PCOS is a catch all,though!
The women here have been tested to death and are sure of their diagnosis.
Your symptoms are all symptoms of PCOS and I'm so sorry that you have to deal with all of this.
Is there any way at all that you can find a good Doctor and get the care that you deserve.
Bleeding that much and for that long can't be good and I worry that you will become anemic if you don't get looked after.
Alot of women here have had success with Metformin.
I hope that you can find a way to get the medical help that you need.
I wish you the best of luck!
I'm hurting for you just reading your symptoms. I want you to know first of all that we're here for you.
My periods used to be just like you describe. A few months of nothing, then a few months of bleeding constantly. Heavy, lots of clots too. BCP's helped me to have a period every month, but it was still heavy! Metformin was a godsend to me, it gave me a period every month that wasn't too heavy, and only lasted 5 days! It helped me lose weight and get pregnant too.
I hope you are having your exam soon cyster! I was given met by a family doctor so I wouldn't think there would be a problem with them prescribing it at Planned Parenthood. The met was not expensive (at least where I live it wasn't).
Please let us know when you're going to the doc! I'm worried about you.
If I can help, please don't hesitate to pm me or email me.
Hugs cyster,
Jenny
__________________ Jenny(30) Josh (30) married 3/30/96
PCOS dx 1/03
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There is no a-typical PCOS-sufferrer. There are some of us that have very similar symptoms but there are a lot of thin cysters out there that have a load of trouble getting treated because of it! I had trouble with the diagnosis because I may be overweight but I didn't have the excess hair and my Aunt Flo problems didn't start until I was 36. I don't think there are any two that are alike.
I feel bad for you that you've had to suffer so long and are in such a difficult place right now with Aunt Flo visiting forever. Jenny has some good advice about the metformin -- I've also just started on metformin as well as it will reduce my insulin and then level out the female hormones -- my problem was also non-stop bleeding. So far, so good.
I hope you get the information and treatment you need. Best of luck to you --
Susan
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Dx: 8/28/06
Met - 2000mg, Norvasc 5 mg
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One Furbaby --Freckles the Wonder Dog---
is now an AVATAR!!
pcos suffers can either have trouble keeping weight on or loosing weight! its a huge spectrum as is with any other "condition"!! pcos are also "ment" to have bad skin,and excess hair where as ive had 3 spots in my whole life ever (ok lol not right but u know what i mean - it got bad for a while...3weeks maybe but is better now) and my hair doesntshow with a tan! i have trouble with my weight and have no periods to speak of!
1 out of 10 women are ment to suffer and between when u were dx and now - there is a lot more information and more people are being dx!!
it is quite a serious condition and not as some friends said "nothing to worry about" as i have now found out i can never have children without fertility meds! im 21!! also i have a incredible high chance of getting diabetes!
i really think u need to take the dx seriously as it sounds like u have something wrong in that department! and i know how u feel i had a 4month solid long period! i swear i spent ALL my wages on protection then! but not had one since = no babies
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also, you may indeed have thyroid issues. In the last 3 years the rules about what constitutes normal thyroid activity has changed and many people considered in normal ranges are really not.
I was diagnosed about 14 years go. I was just 15. I had irregular periods and had been on BCP since shortly before my 13th birthday. Even with the diagnosis I didn't get any more treatment. PCOS was not unheard of, it was just thought of as a fertility issue. Now there are doctors who are much more educated about PCOS. It's not rare. It's very common. It can happen to women of all shapes and sizes. I graduated high school in a size 6.
In my teens I bled all the time. I would bleed for months on end, stop a week, and start all over again. I had to be hospitalized for it once. I bled for 6 months straight. I was 16 and they wanted to perform a hysterectomy. Thank goodness I wouldn't hear of it. I wouldn't have my Jamie today if I had agreed. 10 years ago my periods stopped all together. I had nothing. It was around this time that I began to balloon. In 2000 we decided we wanted a baby. We began seeing an RE that is extremely knowledgeable about PCOS. He covered all his bases, new bloodwork, u/s, etc. PCOS for sure. In fact, they used my u/s in a conference to display typicle pcos ovaries. When I started there I was insulin resistant, but before the second year of treatment was out, I had type II diabetes. Yeah. The third year of treatment, I got pregnant with my long awaited and wanted baby boy. I'm going back now hoping to have another.
Everything you described rings of PCOS. I don't think it's a mistake. PCOS is not a catch-all diagnosis. There are specific types of PCOS. It's important to accept you have PCOS (unless there is some other reason you don't believe it besides your weight) and find a treatment that works for your body. PCOS puts you at a high risk for type II diabetes among other things. You can read the research articles about all that. I was too late when I found that low carbing was my miracle treatment. The sooner you find what works for you the less "damage" is going to happen to your body. Metformin has been a miracle drug for many women. I strongly recommend it and I use it. It's widely recognized among PCOS educated doctors to be the first line of defense against PCOS.
When my first doc diagnosed me, I was skeptical too. I wasn't IR and she was putting me on a medication for diabetics!?! It didn't make any sense to me and she couldn't answer any of my questions. I switched to a RE who explained it all to me. I wish I could have tape recorded his answer (and the drawings he did while he talked) because I'll never be able to explain it quite the way he did. It essentially came down to the fact that when some hormones are off balance, others go out of wack too. I left feeling secure that this was the right diagnosis and I was on the right treatment track.
If you're skepical of the insulin connection, do some research; there's more out there than I ever realized. I think one of the best things I did was ask a lot of questions here too. These girls know their stuff...
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I know how frustrated you must feel! Doctors don't really seem to care the way we expect, and it is hard to get good treatment these days.
That being said, PCOS is not a disorder of "fat" people. There are plenty of thin women with PCOS, and a very good portion of us were not heavy until our PCOS reared its ugly head. I was thin my entire life, and at age 19 starting gaining weight, much like you, for absolutely no reason. I had done nothing different. I gained 80 pounds in 18 months. It was ridiculous, upsetting, and scary. I had no idea what was going on.
My AF had always been pretty irregular, very heavy, and painful. I was put in BCP's as a teen for it.
I do have excess hair (which has gotten worse with time), and irregular menses (worse with time), and several other symptoms. However, these started BEFORE I ever gained an ounce.
Anyway, while you may NOT have PCOS, don't exclude it based on the concept that it is a disease of "fat" people. While many women with PCOS may be overweight, it is not a definitive symptom that make a diagnosis solid and fool proof.
Stacie M
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Still bleeding. Immensely. My appointment is on Monday. I don't feel light headed or anything. Not woozy, like one would assume I would be with this amount of blood loss. For about 2 hours today I was bleeding so heavily that the pad didn't have time to absorb it. And I use cloth pads too, they absorb pretty quickly. But I just keep drinking plenty and grudgingly accepted that I need to take iron supplements. Yay.
I called the doctor and told them I would be on my period and couldn't reschedule because it's been going on for five months and might not ever end. The nurse's response was that a five month period was not normal. Wow, never would have thought that!
I didn't mean to offend by anything I said earlier. I'm just sick of the questions and everything. My son went from doctor to doctor to hospital to doctor.... for months with no skin because no doctor could figure out what was wrong with him (we figured it out and he's okay now). So I am DONE with doctors now knowing the answer!
I had symptoms similiar to yours. I was always thin and then began gaining and gaining weight. I also have irregular AF ever since she began visiting with some periods of "regularity". I was diagnosed after seeing my doctor for almost nonstop bleeding with little breaks. This was very odd as I would often not have AF for months...I found out that this was anovulatory bleeding and had really nothing to do with a true AF. I hope you get the answers you are searching for. I know how frustrating and sometimes embarassing it can be to see doctor after doctor. Good Luck!!
__________________ Julie
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