New here, frustrated with tons of symptoms and no diagnosis.
Warning ... this got long. I have a lot on my mind right now.
I found this website last week after I saw a new doctor who mentioned that PCOS was a probable cause of the accumulating symptoms I've been having over the past few years. My normal doctor has done blood work to check my thyroid, and since it came back normal he pretty much started treating me like I was just imagining the symptoms I'm having. Anyway, the new doctor said I sounded like textbook PCOS. I did some research on my own after I left her office and reading a list of PCOS symptoms is like reading my own health history. I have had little black hairs on my chin since I was a teenager (I'm 27 now) but they were always sparse and didn't show up very quickly, so I only had to pluck once or twice a month. Now, I have to pluck daily or it looks like I'm growing a beard, I also have a few hairs on my neck and a few on my chest. I used to have very thick hair, but it seems to be thinning a little and I notice a lot more hairs on my hairbrush in the morning. I have headaches at least twice a week and I have noticed that my periods have gotten a lot heavier. I am currently on birth control because I am currently finishing my bachelors in nursing and can't handle a pregnancy right now, but I do want to have another baby some day. I have no idea if my periods would be regular if I wasn't on birth control, but I've noticed that the bleeding doesn't slow down at all until I start a new pack, which is weird for me. I've also noticed a lot of mid-cycle pain. I've also gained 20 pounds in the past 6 months, all in my belly, and I can't lose it for anything. I have been watching my calories and nutrition, and I eat around 1800 calories per day - not dieting, but definitely not enough to explain the weight gain when I eat LESS now than I did before I started packing on pounds! I haven't changed my exercise habits, if anything I exercise more now than I used to.
Anyway, I found this site and registered here, because the doctor was so sure that PCOS was my diagnosis that she had already talked to me about medication options and treatment plans. However, I saw her today and she didn't check my hormone levels at all with my original blood work (I told her I wanted to check that and we drew more blood today, I should have those results by next week) but she did check my blood glucose and insulin and they are perfectly normal. So whatever problem I have, it doesn't appear to include hyperinsulinemia. She grudgingly agreed to check my hormones but says that if I don't have hyperinsulinemia, then PCOS is not the problem and she doesn't know what's going on. I feel like I'm right back where I started .... my labs are fine, so my symptoms must just be imaginary because there's nothing more to me than what my blood work shows.
My question is, has anyone else experienced this? Is it possible to have PCOS without hyperinsulinemia? I am a nursing student so I have some health care education, and as I am thinking about what I know about PCOS (which is admittedly not much, I need to learn more) it seems like it should be possible, but I don't know if it is.
My doctor also balked at the PCOS diagnosis upon learning that I do have two kids who were concieved without difficulty - one was a surprise! But, my youngest was concieved more than 4 years ago and I think that a lot can change in 4 years.
On the one hand, I don't want to have PCOS. But on the other hand, it just fits my symptoms SO WELL. I just want a diagnosis. I don't care what my labs say, I KNOW that something is wrong and I am so frustrated and disheartened right now. I don't want to feel this way any more, I don't want to watch my diet and exercise and continue to watch the pounds pile on, I don't want to spend time plucking hairs out of my chin and feeling disgusted with myself, I don't want to have acne that belongs on a teenager, I don't want my hair to fall out, I don't want to be grumpy and moody and tired and embarassed about how I look! I know there is something wrong, and I don't want to have PCOS but at this point I would welcome the diagnosis, because I just want an answer.
(clearly, I have a lot of venting to do about this. Sorry it got so long.)
So whatever problem I have, it doesn't appear to include hyperinsulinemia. She grudgingly agreed to check my hormones but says that if I don't have hyperinsulinemia, then PCOS is not the problem and she doesn't know what's going on.
Is it possible to have PCOS without hyperinsulinemia?
ABSOLUTELY.
Time for a new doctor. This one hasn't read the literature on PCOS. I'm not suggesting that you actually have pcos, but your doctor's reasons for you NOT having it aren't sound.
Usually the diagnosis includes both anovulation and androgen (testosterone) excess but many related conditions have become lumped together in the literature under the term polycystic ovarian syndrome. Woman with polycystic ovaries on ultrasound do not all have androgen excess, but insulin resistance is manifest in equal frequencies whether or not there are elevated androgens (11). Because of this mixed clinical picture, those conditions all collected under the term polycystic ovarian syndrome in the medical literature may include:
traditional PCOS -- anovulatory, increased androgens, no insulin resistance
endocrine syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes
non-traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes
I don't know what to say. My doctor said that I have PCOS based on the lack of periods, my weight and tummy, and some chin hair. It was only after I had unexplained pelvic pain for a few months and had an ultrasound that they said they could see cysts. But I was already labeled as PCOS before that.
Part of your last paragraph struck a chord. It feels like my body is revolting against me and I'm angry and depressed too. The chin hair bother me the most. I can handle being overweight, but this is just too much... I thought I'd be at least 70 before I had to start worrying about that, not 26!
KatCarney: Thank you. I am going to wait and see what this doctor has to say about my hormone test results - they should be back next week - but I also made an appointment to talk to my Gyn about this. My hope is that she'll be more informed. I did mention the hair growth to her and she sort of blew it off last time, but I think maybe I'll let it grow for a few days before I go (blech) and SHOW her what the situation is! Whatever it is, I think it's strange for a doctor to suggest a specific diagnosis and be sure enough to start discussing treatment, and then toss that idea out the window because of one lab result even though the symptoms still fit. It doesn't make sense to me. This is drilled into our heads in my courses - treat the patient, not the textbook.
Erimentha: thank you. I am not too uncomfortable being overweight - my cholesterol is a little high (discovered that yesterday) so I am definitely going to be more mindful of what I am eating to take care of that, but I am not terribly concerned about my actual size. It's the hairs and the feeling "off" all the time that I am having such a hard time with. I know the chin hair is sometimes called crone hair and that just breaks my heart. I'm only 27! By ANY standards I am still a young woman, and here I am growing crone hair. It makes me want to cry.
I did mention the hair growth to her and she sort of blew it off last time, but I think maybe I'll let it grow for a few days before I go (blech) and SHOW her what the situation is!
Kat, I am going to print out and highlight some of those articles to take with me when I see my gynecologist in a few weeks. I really am amazed by how much information you have to share. Thank you!
Kristie, it is unbelievably frustrating. I tend much more toward stoic than hypochondriac, and it is crazy that doctors just assume if I would lose weight, I'd be fine. I am sure that losing weight would help, if I could figure out a way to help myself lose the weight! I just know there's more to this than just being overweight, though.
Kat, I am going to print out and highlight some of those articles to take with me when I see my gynecologist in a few weeks. I really am amazed by how much information you have to share. Thank you!
You're welcome!!
Call the doctor's office and ask if you can fax the information in advance. When you fax it include a note saying you'd like to discuss the information at your appointment.
Mark any sections of text that are particularly of interest to you and your situation.
It will save time at the appointment (if the doctor takes the time to at least 'glance' and the information.)
If she hasn't looked at it - get a new doctor.
__________________
Hey, SoulCysters! Need to eat more veggies, but can't find recipes??
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Welcome Aceso! I had a similar experience trying to get diagnosed. Because my testosterone was not elevated, my dr reasoned it was not pcos. The gyno said the same thing even though I had cysts, no peroid for almost a year, packed on 15 pounds whilst dieting and exercising daily and my skin got really oily. All this started when I came off birth control and went on for 6 months before getting a diagnosis, all the while I thought I was going insane. I kept searching and went to reproductive endocrinologist (even thought I wasn't trying to conceive) and he said pcos is a clinical diagnosis that he judges 3 ways: 1) Cysts on your ovaries
2) Increased androgens (oily skin, hair growth etc)
3) Irregular periods (current or history of)
When I mentioned what my dr said about the testosterone levels to the RE, he said he has seen women with full beards that have a normal testosterone level. He said you can't rely on the labs too much because every woman is so different. Good luck with everything!
Hi im so glad u found us. it is possible to have PCOS without hyperinsulinemia usually people with out diabetes who have pcos have family members who have pcos. woman with pcos usually gain weight from being insulin resistent ive had my thyroid checked so many times i lost count and every test comes out fine but i still gain weight even though im on a 1200 calorie diet it took 5 years 2 find out i had pcos drs confuse pcos with lots of other problems especially if ur young which is why there arent 2 many teenage girls who have been diagnoised with pcos i hope i answered your question
__________________ Jennifer DX-november 2005 glucophage 2000mg spironolactone 200mg yaz and nexium
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New here, frustrated with tons of symptoms and no diagnosis. 
