[Goldana]

Hi everyone! This may be a long one but, I thank you in advance for reading it.
I've pretty much known that I have had PCOS for 3 1/2 years now. But, getting a diagnosis is proving to be extremely difficult. Let me start from the beginning.
It actually started about 5 years ago, my youngest daughter was 1 1/2 at the time. I stopped having my period. Since my periods were like clockwork this alarmed me. After 2 months and many negative home pregnancy tests, I thought I better see my gynecologist. The reason why I wasn't having my period was due to a large cyst on my right ovary. I was given pills to jumpstart my period and I was told that the cyst would disappear on it's own. The cyst did disappear but, I wouldn't get my period naturally again for another 10 months. Supposedly it was from the pills that jumpstarted my period.
A little over 1 year after that, I had extreme pain on my right side. Pain in my lower back, radiating down my leg. Again diagnosed with a large cyst on my right ovary. I was told once again, it would disappear on it's own. At this time my period started to return but, it was never on time and certainly never regular.
Then other symptoms started happening, most prominantly massive weight gain all in the abdomen (I gained 75 pounds in 1 1/2 years without change in diet), excessive dandruff, fatigue, irritability, depression, dry skin, major pelvic pain, and always an achy feeling on my right side.
A few months later, same problem as above, major pain! It was the weekend and no dr. was open so, I went to the hospital. Finally met a "smart" doctor who examined me and told me that he saw a cluster of small cysts on my ovary which would indicate PCOS. He told me to see my normal gynecologist and hopefully I could get some relief.
I ran home and looked up PCOS on the internet and thought wow, that sounds just like me!
I went to my normal gynecologist and I was told "Those aren't cysts. They are just tiny bubbles and nothing to be concerned about." Like an idiot, I believed him while other symptoms started to pop up and spiral out of control.
Examples: Skin tags, dark velvety skin patches, excessive thirst, blood sugar crashes, acne, pain during intercourse, hard time losing weight (it took me over 1 1/2 years to lose 25 pounds!), etc.
Finally I said enough is enough and decided to switch gynecologists. I went to the new one with my information in hand, symptom list, etc. I got a 5 minute examination where she looked with the ultrasound and said "No, no cysts. Lose 80 pounds and come back." I said "Wait...stop. What about my symptoms?" Her reply was "That ALL comes from being overweight. Lose 80 pounds and then we will talk." Needless to say, I was almost crying when I left the office.
I went home and got back on the internet to do some more research. I thought maybe this is all in my head, maybe I am going crazy. Looked up more stuff and now I am 100% convinced that it is PCOS, probably with IR. I think I'll give it one more shot and this time I go to my normal general doctor.
I explain my problems and he does a normal blood test. "No, nothing wrong with your blood levels. NO IR." And of course he doesn't forget to mention...LOSE WEIGHT! Of course he doesn't want to hear all about how I have tried to lose weight with diet and exercise. He just gives me that look like "I'm sure after you leave here, you will be at Mcdonald's ordering 5 super-sized meals." At this point, I pretty much lose faith in all doctors. Aren't you supposed to do a fasting blood test?
My symptoms are getting worse by the day. Some mornings when I wake up, my pelvic pain is so bad that I have a hard time walking. I know when I have cysts on my ovaries because it just has this wonderful unique feeling of pain. My periods are never normal. And I am so darn tired...it doesn't matter how much I sleep or how little, just constant fatigue, I could go on and on.
My husband was the one who decided we aren't going to give in so easily. He told me that I don't deserve a 5 minute examination, a doctor should listen to ALL of my complaints. So, he called up the hospital where I got that one smart doctor and made an appointment for me. We figure with a team of doctors...one of them has to be smart and willing to listen. My appointment is on August 2nd.
So, I guess my main question is...how do I make them listen? Has anyone had this problem with getting doctors to take you seriously? Tips or advice?
Thank you soooo much for listening! I truly appreciate it.

[blondebritbrat17]

It took me three tries and three rounds of testing to finally be found Insulin Resistant. We also tested me for PCOS which I don't have yet but I do have some symptoms already. The one thing I insisted on at the end was to have all the tests that were out there for diabetes and blood sugar to be done to me. Finally my doctor gave in and said there is one last really specialized test that we haven't done, it was a glucose fasting test of some sort and that was the one that proved me right. All I can say is stick to your guns and tell them your weight gain did not occur until all these problems started happening.

[irisheyes213]

I am sorry that you have had a rough time of it before.

My suggestion would be to go into the new doctor with a positive attitude, your list of symptoms, and the gumption to question if they say something like "tiny bubbles on your ovaries" umm..oh my. Be prepared to ask them about performing certain tests like Glucose Tolerance, cpeptide, fasting insulin and hormone tests like FSH/LH, testosterone, and prolactin.

Also, be willing to listen if they think they should test for other issues such as thyroid or coritisol problems.

Good Luck and I hope that your appt goes well!

[marbleflys]

I'm so sorry for your pain and frustration....take some time and write eveything down , list the symptoms, the diet, the exericise, chart the pain (time of day) hours you sleep....I would type it in BOLD and give it to the doc. he'll put it in your chart and refer back to it as you get dx'd. and tested.

TELL HIM that your symptoms are years old and worsening and don't take a pat excuse for an answer, if he can't help you get a name of someone who can.

I hate to say try this, but there are many docs. who are board certified Internists who specialize in obesity management, (there is simply more money to be made in treating fat people for profit)...someone like that might be more open to researching and testing your sypmtoms....not a barietric consult from a surgeon, but weight management. I guess it depends how large your town is, but where I am there are at least 3 specialists within 15 miles.

whatever you do, be prepared to act like a CUSTOMER, not a passive patient. Your body is your mercedes. best of luck to you!

[kcmedc]

Hey Golda

To answer your question yes you have to do a three hour fasting glucose/insulin level test to see if you are IR. In the mean time watch your carbs. Everything I've read is it's all about the carbs. As far as getting docs to listen to you just keep hounding them. The squeeky wheel gets the grease. Good Luck!!

[lilybelle]

I am very sorry for what you've had to go through. I hope this other Dr. can help you.

I had a hysterectomy 6 yrs. ago and at the time asked them to leave my ovaries in. The surgery took longer than expected and the surgeon explained he had to remove large cysts from my ovaries. I was never told that I had PCOS or Insulin Resistance. I was having a rough time with wt. gain and had gained 50 lbs. in about 1 1/2 yrs. I was told to "lose weight". I also had a lot of pelvic pain especially with intercourse. I had blood sugar crashes. My regular Dr. put me on Insulin for Diabetes and eventually switched me to oral diabetic med's. I started seeing a new Hepatologist 2 yrs. ago and he ran a fasting glucose and fasting insulin level. He said you don't have diabetes, you have Insulin Resistance and PCOS and have been being treated completed wrong. He put me on Glucophage and a low-carb diet and the wt . came off much faster and easier than anything I've ever tried.

Your symptoms seem almost identical to what I experienced. So, I would persist at getting to the bottom of this.

[Goldana]

Thanks everyone for the advice and for sharing your experiences. I guess I just needed to majorly vent, because right now I am so fed up.
Only 2 days left until my appointment. I'm crossing my fingers that some doctor is going to listen to me because I can't take much more of feeling like this. I keep telling myself to remain optimistic but, in the back of my head I'm thinking that I'm going to get treated the same way as before.
If that happens then I have no choice but, to go to another hospital. There are about 6 different hospitals in my area so, if I have to, I will go to all of them.
Right now I feel like a walking disaster area. I'm going to feel like an idiot if I make a list of all my symptoms because it will be 5 pages long! In some ways it drives me crazy. If doctors keep telling you that you are a normal healthy young lady then you begin to wonder if you are a hypochondriac. But, I just KNOW that what I am experiencing can NOT be normal.
Thanks for listening to me...I'll keep you updated!

[Goldana]

I'm back from my appointment and I am so happy that I could kiss the doctor I saw today!
He wasn't very pleasant personality wise (didn't even smile once) but, I guess that doesn't really matter. The point was that I finally found someone who knew what I was talking about! He is a specialist in IVF treatment so, he knows all about the symptoms I am having.
I described all of my problems and he was surprised that none of the gynecologists that I have been to has never referred me for hormone testing. He said it sounds like I have all 3 things, PCOS, IR, and Endometriosis.
I am going back on day 3 of my menstrual cycle to have my blood taken and they will also do the blood test for IR (where you have to drink that sweet stuff). Then 2 weeks later I get my results and they will also do an ultrasound.
I am so thankful that I will FINALLY know what is wrong with me. I still have 2 weeks until my period and then I have to wait another 2 weeks for the results and ultrasound, but I can deal with 1 month since I have been living with this for 5 years.
Thanks for the help everyone! I will keep you updated!

[irisheyes213]

Glad that your appt went well!

[lilybelle]

I'm very glad you found a Dr. that listened to you and is going to do the necessary work-up to get a correct diagnosis. WTG on being persistent. I know it's a pain in the butt and stressful, but you'll be so happy to just know what the problem is so you can work on resolving it.

[blondebritbrat17]

That's great! You just can't give up. Endometriosis huh? My mom had that and she did not feel good at all some days with her back.