If you know ANYTHING about PCOS, please take the time to read!?

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To be honest, you’ve probably seen my questions about this ’round here for the past few days, and I’m honestly sick of explaining this (to my doctors and everyone), but no one seems to just shut up and listen to what I have to say, instead of putting their own spin on it (especially my doctors and my mom).

So two years ago I was diagnosed with PCOS (though they suspect I’ve had it for a long time since I was a kid because I had unusually high insulin levels and weight [for my lifestyle] even though I was a pretty active kid and didn’t have diabetes) and vWD (von Willebrand’s Disease) which caused me to have six-month-long periods. They gave me blood transfusions, birth control pills, yadda yadda…Now here we are, two years later. I’d missed my period for six months again, while on the pill, and then eventually stopped taking the pill because I was getting extremely sick…A month and a half ago, they jump started my period with progestrone (agestin or something like that) put me back on the pill (aviane) and I was still bleeding so much that it would run down my legs whenever I got up, and my underwear and clothes and pads were sopped with blood (sounds gross, I know, but an important detail–it was like someone just gutted me from down there and left me to bleed, like some excessively grotesque horror movie). Last week (Monday) I went to the ER and they put me on Low Ovral (then sent me home because my hemoglobin was just 10.5 and no serious drop), four pills for two days, then three for two days, two for two days, and then one a day. I was still bleeding, and what’s more, I got extremely sick. They’d also prescribed Zofran for the nausea but my insurance would only pay for a five-day supply and so I have to use it very wisely. Now I’m still bleeding, even more just after I take the pill and then SLIGHTLY less a few hours after, I feel hungry all the time but at the same time I don’t want to eat because everything makes me want to throw up (I tried filling up with water and fruit but that only makes the cramps and nausea even worse), I get excruciatingly painful cramps and very bad headaches, I feel in a daze, sometimes dizzy, and I have this constant pain in my stomach and just below the uterus that worsens on top of the cramps and LOTS of vaginal cramps. I’m also sluggish, sleepy, and fatigued–I can’t even walk up steps without feeling winded. I started to sleep untill NOON when I’m used to waking up at 6am. While I used to go on walks for HOURS nonstop, practice dance routines for two hours straight every day, and go to theatre/dance classes on weekends, now I can’t even practice a one-minute routine without feeling like I could just collapse on the spot. I can’t even stand for long periods of time. Everyone keeps saying it’s because of my weight (I’m 90lbs over, even though the PCOS counts for a lot of it) but I’m LOSING weight now (pushing myself to exercise regularly but not as intensely as I used to) and there’s still NO DIFFERENCE. If anything, things are getting worse. I notice now that I can’t even eat a slice of cake or a single veg’n candy bar (which I don’t do often) without it sticking to the ugly, annoying fat I’ve already got. Furthermore, I’m a VEGETARIAN. No one seems to think it’s strange that a vegetarian who is as active as I am is THIS fat. Furthermore, everyone in the doctor’s office tends to dismiss a lot of my symptoms because they believe that fat people can’t be as active as I was.

That’s the same mentality that got me to a 3.5 hemoglobin two years ago, and still trying to push myself (walking through unbelievable heat and long distances) to prove that I wasn’t a weak person (which was what I thought and what everyone told me before I got diagnosed) and thus almost KILLING myself. Now everyone’s doing the same thing–calling me a lazy fatty, making me eat less even though it makes me sick, telling me I’m doing all this to myself, making me out to be weak as a woman (girl, really, since I’m sixteen).

I seriously think something is wrong with me. Right now I’m in and out of very bad pain and nausea. I have a terrible headache and feel dizzy sometimes as I am walking. Should I perhaps go to the hospital? Do you think something is really wrong with me? What the hell should I do? I’m so frustrated!

Also, I get checked regularly for blood sugar and insulin levels and the doc said that my frequent exercise and healthy diet is keeping the insulin down and that my blood sugars are all normal. I doubt I have diabetes, even though everyone keeps suggesting it. I also don’t have all the symptoms of diabetes, just one or two of them and the same symptoms could apply to a LOT of other well-known illnesses I’ve researched…certainly not a basis to diagnose me with diabetes. I also get my cholesterol levels checked and though my triglycerides are SOMETIMES just a little high, nothing serious has happened and I usually keep it down. The "Good Cholesterol" has been at a good level a
Got checked for fatty liver…also normal.

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2 Responses to “If you know ANYTHING about PCOS, please take the time to read!?”

  1. 1
    morgan Says:

    I suggest trying to find another doctor that will listen to you. I don’t have PCOS, but I have had a lot of health problems myself, and I know how hard it is to find a doctor. The fatigue, weakness, and sleeping a lot are more than likely caused by anemia from the amount of blood you lose. I remember when my hemoglobin was around a 4.2. My doctor was surprised I was even able to walk….I know how it feels. Along with my other health issues, I have ovarian cysts. I understand some of your symptoms as well. You should go to the hospital, and please find a doctor that will really listen to you and pay more attention because it seems your current doc isn’t listening or caring that you believe something is wrong. You know your body best!

  2. 2
    Elisabeta Says:

    Did they ever do an ultrasound or CT or MRI scan of your abdomen? I was watching this show one day called Mystery Diagnosis and they couldn’t find out what was wrong with this young lady and she sounded a lot like you! In the end she ended up having something called Endometriosis, I think that’s how you spell it. I don’t mean to scare you at all and I’m only 17 and I got this off of a show, but you could ask your doctor about it, but tell him/her that you looked it up and didn’t find it out from a kid.. aha! But yeah, these are the symptoms Some women with endometriosis do not have symptoms. Other women have symptoms that range from mild to severe. Endometriosis symptoms are often most severe just before and during the menstrual cycle and get better as the menstrual period is ending. But for some women, pain is ongoing and does not improve during the menstrual cycle. Ongoing pain is especially common in teens with endometriosis.

    Symptoms may include:
    Pain, which can be: Pelvic pain. Severe menstrual cramps. Low backache 1 or 2 days before the start of the menstrual period (or earlier), becoming less during the period. Pain during sexual intercourse. Rectal pain. Pain during bowel movements. Infertility , which may be the only sign that you have endometriosis. Between 20% and 40% of women who are infertile have endometriosis.1 Abnormal bleeding. This can include: Blood in the urine or stool. Some vaginal bleeding before the start of the menstrual period (premenstrual spotting). Vaginal bleeding after intercourse.
    Endometrial growths (implants) that are large are not necessarily more painful. Instead, pain and bleeding are closely linked to an implant’s location or how deeply it has grown.
    Several other conditions, such as painful periods, adenomyosis, or noncancerous growths in the uterus called uterine fibroids, can cause symptoms that are similar to endometriosis.
    Let me know if I helped! :)

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