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PCOS/Insulin Resistance Support Support for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.

How were you initially diagnosed with PCOS?

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Old 05-23-2011, 03:37 PM   #1
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Default How were you initially diagnosed with PCOS?

Apologies if this is a repeated topic, and feel free to link to other threads.

Okay, so, I have suspected that I might have PCOS for a long time. I started menstruating early (9 yrs old) and I was irregular from the start. I'm 22 years old now and for the past five years, I've only had 1-2 periods each year, if even that. Other symptoms: dark hair growth on the sides of my face and chin; acanthosis nigricans (dark velvety skin on my inner thighs and under my breasts); some body acne; and of course, a lifelong struggle with obesity.

The thing is, I have no idea what I should do to go about getting diagnosed and treated for PCOS. In my family, one wasn't supposed to talk about having "feminine problems" so I had a tough time getting guidance from anyone. I just scheduled my first ever OB-GYN appointment this week, even though I've been sexually active since I was 18. I'm kind of scared because in the first year after I lost my virginity, I thought that I just had some preternatural ability to not get pregnant and had a lot of unprotected sex. I've been tested for STDs and HIV recently, so I doubt that is a problem, but I'm pretty sure that I have some kind of fertility issue.

Anyway, I guess my question is, how were you initially diagnosed with PCOS? What led you to suspect that you might have it? Did your OB-GYN check for ovarian cysts? Did you see an endocrinologist? Which came first? Or did you just kinda find out spontaneously?

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Old 05-23-2011, 06:30 PM   #2
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I started by going over all my symptoms with my regular doc. It actually took me a long time to compile it all into one complaint, if that makes any sense. To even put it together that it was all related and bring it to his attention. I'd never heard of PCOS and had no idea what it was, much less that all these together might be a specific thing wrong with me. Alot of it I'd put off as just weird, like hey I was just the unlucky hairy girl lol.

When I did finally have the discussion with my family dr, he immediately admitted that he while he knew what it was he had zero experience treating it. He ordered an abdominal CT just in case it was something else, and found some large cysts, so he offered me birth control pills to help alleviate some symptoms (which are usually the first line of treatment anyway) and referred me to a gyn.

The gyn he referred me to actually told me that he didn't "believe in" PCOS, that it was one of many "syndromes" that he thought were bogus. That aggravated the **** outta me and put me off of seeking treatment elsewhere for several years.

It wasn't until I went to another gyn that I got any real answers. A medical history and going over my symptoms, some blood tests to check hormone levels, and an ultrasound were all it took to get a diagnosis. Not that it has made that much difference. There is no cure, and there isn't really even any reliable treatment.

I was offered metformin and decided against it due to the incidence of side effects. BC pills and any other hormones make me gain weight like crazy, so I don't do that either. The only real difference in my life today with a diagnosis is the knowledge of what is whacked out in my body and love/hate relationship with carbs, and the fact that I now take a supplement that helps counteract the insulin resistance.

I think best bet is gyn, just be sure to find one that has experience dealing with PCOS.
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Old 05-23-2011, 06:36 PM   #3
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Here's my long and drawn out story:

I went to a primary and had my yearly exam and she said "I think you might have PCOS" and that was that. Put me on birth control and sent me on my way with no explanation. I had never heard of PCOS so I went and looked online a bit but still wasn't sure what was going on... I was around 180 lbs at the time.

Then a year or two later my periods totally stopped and I went to a gyno and had another exam and she checked for cysts with an ultrasound. I had cysts ALL over. She changed my birth control, put me on spironolactone and metformin and told me it'd be fine and said "eat more vegetables." I couldn't take the metformin it made me vomit and I saw zero results from the spironolactone.

Then I changed doctors because of a change in my insurance and that one wasn't any help either- just kept saying "lose weight." She did mention the words "south beach diet" at one point. She tried putting me on the extended release metformin but it still made me sick. I asked her to up my dosage on spironolactone (I was only on 25 mg) and she said she didn't think that was the "answer" despite me telling her my research showed you have to take at least 100 mg for it to be effective (yeah that's when I changed doctors cuz she obviously had no clue).

So I started researching online and found out a LOT about PCOS and about eating on it and how to control symptoms. I then went ahead and did South Beach diet and that really helped me to lose a good amount of weight I controlled my blood sugars with diet and just dealt with the hair growth with waxing and stuff.

My new primary- who is awesome- has been very supportive- she said that south beach diet was great and then referred me to an endocrinologist who tried again to put me on metformin but it didn't work for me STILL but she said since my blood sugars are fine I didn't need it. And the spironolactone gave me palpitations and severely low blood pressure at 200 mg so I stopped taking it. She told me I could continue on it if I wanted but I declined- I can deal with the hair!

That's pretty much how I learned about it but honestly most doctors seem to be clueless about it so ask for a referall to an endocrinologist and read all you can. With our condition it seems that following a lower carb diet helps. Most of my diet is veggies and lean protein added with small amounts of fruit and compex carbs. I personally feel diet plays the largest role in controlling our PCOS symptoms- based on my experience and the experience of women I know with PCOS.
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Old 05-23-2011, 07:19 PM   #4
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There seems to be a lot of people who had trouble getting diagnosed...glad to know I wasn't the only one!

I had the same problems really. I started menstruating at about 14, and I was NEVER regular...three periods a year was my average and when they did come they would last for two weeks or more! I also had acne very badly (I was actually seeing a dermatologist and taking antibiotics for it for a number of years), and I also had what seemed like an excessive amount of hair on my face. While my facial hair is blonde (thank heavens!), it was still very long and thick and seemed to grow faster than it should...when I was 16 and started waxing my eyebrows I had to do it every 3 1/2 weeks like clockwork, rather than the 6-8 they tell you it should last. I never put the symptoms together.

At 16 I started seeing another doctor after my family moved, and this doctor was young and just out of med school. I went in to get worked up for my irregular periods, and they ran an initial hormone level and said everything was "fine"; but the doctor put me on birth control anyway because he was concerned that I was going to run a risk of uterine cancer if I didn't start flushing things out regularly.

The BC seemed to help, but sometimes I'd still skip periods or have extremely light ones...not to mention I started craving sugar like mad! I mean, I would go through an entire large bag of candy in one day! Needless to say this did absolutely nothing for my weight or my health.

Two years ago I moved again to another state and started seeing another gyn. He asked me about my medical history, and I told him. He asked me if I'd "always had acne", "had extra hair on my face", "had problems losing weight" and such. Of course all of these were the symptoms I had suffered with for years, but I didn't think they were related to anything. That's when the doctor said, "I see you tend to carry your weight around your middle. That's a sign of something called PCOS." He wanted to send me for ultrasounds and a blood test with an endocrinologist to verify, but my health insurance is absolute crap and won't pay for any of it. So he made the diagnosis based "purely on symptoms"...so while I've never been formally diagnosed with blood work we're treating it as though I have been.

The first thing he did was switch me from a tri-phasic birth control pill (which I had been on) to a mono-phasic. He said that was the recommended treatment for women with PCOS because their hormones are "all out of wack anyway" and adding three different ones to the mix "doesn't help anything". He explained the links between PCOS and Insulin Resistance and recommended trying a low-carb diet and seeing how things progressed. After I went home I started doing research and everything he'd said was verified in the numerous medical sources I looked at. I started the mono-phasic BC pills, which work much better and don't give me the sugar cravings I used to have with the tri-phasics. I started on South Beach and working out more regularly. I also started taking Cinnamon Supplements daily to help combat insulin resistance...it's a natural alternative to Metformin. My blood sugar has been much steadier since I've done all of this and things seem to be going better.

I've since learned that PCOS is actually a spectrum of disorders and there could be any variety of hormone imbalances that cause it, and that treatment can be better directed once you know which imbalance you have. I'd like to learn one day which imbalance I suffer from, but I'll have to wait for a better job with actual health insurance rather than "catastrophic coverage" only.

If you want more info, there is a great message board for people with PCOS. http://www.pcosupport.org/ Good luck!
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Old 05-24-2011, 12:36 AM   #5
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Always been irregular. Put on pill at 16 to help stabalize that. Always had skin tags and AN, but nobody linked it to PCOS.

I spent next 10 years trying to get answers with no avail, but one nurse told me to watch my thyroid because it was normal but LOW normal so perhaps that explained my fatigue.

I was dx'd around 26 or 27 at long last because I went to my family practice armed with the PCOSA quiz of the time and insisted I be checked out for PCOS. Internet resources for PCOS were getting way better by then!

http://www.pcosupport.org/symptoms.php
http://www.pcosupport.org/support/quiz.php

I was sent to endoc, and had fuller tests. See inciid faq.

http://www.inciid.org/faq.php?cat=infertility101&id=2

And by that point my thyroid was testing LOW, and I turned out not just hypothyroid, but insulin resistant (duh! AN!), metabolic syndrome and PCOS.

I conceived my kid on Metformin which got my cycles to every 60 days. I gave it a year on just that before going in to think about Clomid and the day I got my Clomid prescription intending to start it as soon as I got my period I found I didn't need it after all because I was already pregnant! I had used www.tcoyf.com to help too.

I've ultrasounded and shown cysts at various times but keep in mine that not all PCOS people are going to show in. You are still a PCOS patient even if ovaries get removed.


Also see Mary's PCOS faq for treatments/supplements. Some you need prescription, but some (ex: exercise, lower carb diet, etc) you can do asap!
http://pcosfaq.com/

Geared for teens, but a nice simple explanation of PCOS
http://www.youngwomenshealth.org/pcosinfo.html

So take heart, and hang in there. GL with the appt!

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Old 05-24-2011, 08:15 AM   #6
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Quote:
Originally Posted by ArsenicAlyss View Post
Anyway, I guess my question is, how were you initially diagnosed with PCOS? What led you to suspect that you might have it? Did your OB-GYN check for ovarian cysts? Did you see an endocrinologist? Which came first? Or did you just kinda find out spontaneously?

After missing my period for several months and then suddenly having a month-long heavy period, and it terrified me. I scheduled a wellness exam at the local clinic. Before I went, I tried to get a clue as to what could cause my problem when I came across information on PCOS online. I asked the doctor about PCOS or a thyroid problem. For the first time, I had a doctor who listened to me and who actually knew about PCOS too. She diagnosed it based on what she called "classic symptoms" (irregular period, excess hair, weight in midsection, acanthosis nigricans, acne). If it had been one of the previous doctors I'd seen, I doubt they would have taken me so seriously. I've had a few symptoms for a long time, and finally PCOS linked them all together. I felt sad that no one put the pieces together before I looked this stuff up WebMD/Mayo Clinic, but now I'm prepared to take my health into my own hands because I'm the one who lives in my body and I'm the one who has to look after it. Now I go into appointments better informed and better able to express what my concerns are.

I got my current CFNP after I moved, and she is very helpful. I'm glad I didn't have to sift through a ton of doctors (now that's a strange image) to find someone who'd listen. I haven't seen any specialists about the PCOS. I'm not sure about cysts, and my hormones and insulin levels seem to be fine. It's good that no one has told me I don't have PCOS on a technicality, lol.
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Old 05-24-2011, 08:25 AM   #7
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Before you see this doctor you should call and speak with the nurse and ask if they see patients with PCOS. If the nurse has no clue what it is then I would call another office and keep doing that until you find one who does. Some doctors will even advertise now as part of women's health that they treat PCOS. When you do go in for your appt make sure you tell you that you believe you have this and you want to be tested. It does sound like you many of the symptoms. Good luck!
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Old 05-24-2011, 09:00 AM   #8
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Before you see this doctor you should call and speak with the nurse and ask if they see patients with PCOS.
Yeah, a very useful tip. My insurance provider has a medical complex, and the nurse receptionist chose my CFNP after I mentioned PCOS. It's important to find someone who knows what they're dealing with and listens to your concerns.
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Old 05-24-2011, 09:43 AM   #9
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Forgot to add...

Here's the poll:

Poll: What type PCOS patient are you?

It manifests it at least 5 different ways.

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Old 05-24-2011, 10:58 AM   #10
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Ask what they DO for PCOS patients and what they know about it. TWO of my doctors who worked with PCOS patients (told me they had PCOS patients) did nothing for me- I think they didn't do enough research. The current doctor I have I spoke to and asked her (and my endo) their work with PCOS patients and I was satisfied with their answers and they have been the best help so far with my PCOS.
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Old 05-24-2011, 11:26 AM   #11
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In some ways I was very lucky but in others everyone around me (including myself) missed the big clue on the whole PCOS thing.

So, I went to a gyn at the age of 19 because I wanted to get on birth control pills.

The reason I wanted to get on the pill was because I never got my period regularly, at best, I might have gotten it once or twice every 40 days. But usually it was like 3 or 4 times a year.

I went from weighing "normal" to gaining about 40 lbs in one year.

So, anyway, I go to this gyn to get birth control pills and she asks me the usual questions about my period, why I'm there, etc. She examines me and then she suggests that I get some blood work done that day. They take my blood and a few days later, she tells me that I have something called PCOS and that I need to take birth control pills. She puts me on a triphasic pill and that's what I take for the next 5 years!

This was before the world wide web (or internets as the younger folk call them!) and I didn't really have access to information like we do now. So, I never thought twice about it, I got the pills that I wanted, and off I went to do my own thing.

But the weight never came off. That was annoying. But I didn't associate it with PCOS or anything like that.

Fast forward 5 years later and I am in a new city, with a new doctor, who does know about PCOS and she is worried about me being on the triphasic pills and puts me on Yasmin. She's also worried about my cholesterol and tells me that all of this is part of PCOS and that I need to take care of myself because I may lose my fertility. And that I needed to lose weight. But no one tells me what type of diet, so I struggle on my own. The Yasmin did help stabilize my weight and help me lower my cholesterol a bit.

A few years later, with a new doctor and a new gyn, I get the ultrasound that confirms the PCOS diagnosis (again) and both doctors start harping on my weight. I am still taking Yasmin, but clearly I needed to do something about the 200 lbs that I'm carrying on my frame.

My doctor tells me I need to attend diabetes counseling and to go to a endocrinologist, which starts me down a weird path of this endo wanting me on diet pills. I end my relationship with him and find a reproductive endocrinologist that actually knows what he's doing (even if he is a little weird about holistic medicine).

All throughout the last 5 years or so, I've been doing my own research and analysis on PCOS and my own diagnosis.

I've gone from mild PCOS which could have been treated with just diet and exercise, to insulin resistance, which makes things all the more trickier. I wish I had known what I know now back then so I could have lost the weight sooner and had less of the complications I have now.

I truly believe that the BCP that I was taking ADDED to my insulin resistance and I get frustrated when all these doctors saw my cholesterol profile (showing HIGH triglycerides) and never suggested I might be IR or have an issue (especially knowing my family history of diabetes).

I wish someone had told me that carbs were a death trap for me, because the cycle of carb "addiction" is hard to break out of. I always felt hungry all the time, because I wasn't eating enough protein. Even in my own family of vegetarians, they shunned (animal) protein because they saw it as "bad" rather than carby stuff they eat, which is bad for me!

Unfortunately, it was only when I was faced with true sickness that I finally "saw the light" and turned this whole thing around. It took me a long time to 1) face that PCOS is a disease and I have it and 2) that it's a disease that will get worse if I don't treat it and 3) that I can, in fact, treat it and 4) that the world won't end because I don't eat everything that I want or take a little extra time to take care of myself.

But having gone through that process of learning to love myself (even with PCOS) and then making myself worth the extra time it takes to exercise or eat well, is what's made the difference in my path back to health.

I'm on my soapbox now, so bear with me.....

A lot of the women on this site are here to lose weight because they want to be more beautiful or fit back to the size that they were before.

We, who have PCOS, need to see that we need to lose weight not only because of VANITY but also because it's OUR HEALTH, it's our quality of life. No one can predict how long you will live, because anything can happen. But you can control how GOOD that life will be by what you eat and exercise. It sucks if you spend your last few years of life in pain because you've developed diabetes, you're overweight, you lost vision in one eye and they are planning on removing your toes on your left foot because you've developed MORE diabetes complications.

Off the soapbox now.
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Old 05-24-2011, 03:18 PM   #12
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Quote:
I truly believe that the BCP that I was taking ADDED to my insulin resistance and I get frustrated when all these doctors saw my cholesterol profile (showing HIGH triglycerides) and never suggested I might be IR or have an issue (especially knowing my family history of diabetes).
That's funny. I just read an interesting section on BCPs and posted it here like a summary...

Birth Control Pills for PCOS

I feel the same about my skin tags and AN -- then later the triglycerides. Hello? I've had visible AN markers since I was 3!

Internet has def helped with connecting patients to books, resources, articles, etc. I remember my dx and I was like "HA! I'd been TELLING you people for 10 years there was something!"

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Old 05-26-2011, 02:30 AM   #13
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I was 16, seeing a much older man and concerned that I had never had regular periods EVER. I had MAYBE 1 period per year. My doctor said pcos was a possibility but shrugged it off, told me that it was fine because "we give women pills to stop their periods all the time, medically you don't have to have a period" She put me on birth control and sent me on my way. That birth control was a mistake we tried about 3 or 4 different types and each of them made me bleed uncontrollably, I said screw it and stopped taking it. in Feb or march of 2007 I went back to her and said look this isn't working something is wrong help me. I reminded her of her mention of pcos and asked how we could diagnose it. She sent me to an endocrinologist, on top of my neurologist.


I went and saw the endo that guy wasn't creepy at all (insert sarcasm here), he did some blood tests etc and told me it was possible and referred me to a gyno to get a yearly exam (i had been sexually active but never had had one). I saw the gyno and had the exam in April or so, she told me she didn't believe in pcos but did the necessary testing anyway.


May of 2007 I went back to the endo, he had his test results as well as the results of the gyno and told me that not only did I have pcos but at the rate of scarring on my ovaries from cysts that I had about 10 years to have kids if I wanted them. Oh joy.17 and thinking bout kids already....Needless to say it was a roller coaster. I dropped all my docs and found a different one. That one was very understanding, ran the tests again herself and diagnosed me with IR/pre-diabetes and syndrome x, all things to do with pcos...lovely. Unfortunately I was still in denial and lazy so I never was able to make full use of her support before losign my health insurance. In feb of this year I decided to crack down HARD and took all advice I could and tweaked and fiddled till I could find a plan that worked for me. It has been a long road and I still have a lot of it to travel but with the diagnosis I finally can find out how to treat it. (p.s. as long as this it, this is the short version LOL)
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Old 05-26-2011, 06:15 AM   #14
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So I'll try to make this short.

Since day one, my period was always irregular. When I was in my teens and ate better, I'd get mine every 45 to 60 days, but when I left for college and my diet went downhill, I only got my period 2-3 times a year.

At some point I was put on BC for the irregularity, but I always found it gave me horrific chest pains.
In my early 20s, I started finding hair on my face. By my mid-20s, I started researching the hair issue and became confident PCOS was the problem.

The first time I tried to breach the subject with a GYN (it was the first and last time I saw him), I mentioned the hair first because I was shy about the subject. He swept this under the rug and told me to get laser hair removal.

I went to a different GYN the next year, a woman who specialized in weight issues as well, and this time she did listen to me and had me get blood tests. She diagnosed me when we found out my testosterone levels were elevated, along with seeing my excess hair and hearing my history of irregular periods. She put me on BC, but that of course was BAD NEWS, so after I stopped taking it, I was simply told to get exercise and eat less processed foods and sugar. I was also warned about the complications that could arise from PCOS (diabetes, heart disease, etc.). Since I have no desire to have children, this was not a discussion between us.
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Old 05-26-2011, 05:40 PM   #15
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I was diagnosed in..oh man...2000 with pcos and put on the pill.
Then my new doctor (much more into detail then the old one), saw nothing wrong in my bloodwork...but said I need an ultrasound, because my periods were still all over..or not at all
Anyways went yesterday...yup little itty bitty bumps. Not large enough to cause any hormone change, but still causes problems with the plumbing and weight :/
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