No PCOS for me?????

SABTeacher · 07-30-2005, 12:26 AM

Hi there!

Well, I finally met with my RE today to go over all the tests that I have completed over the last couple of months. He said that he does not think I have PCOS!!! I could not believe this. I have so many of the symptoms, and I had 2 OB/GYNs tell me that they thought I had it (though they never did any lab work or tests to confirm). My testosterone was normal, my fasting glucose/insulin was normal, my LH/FSH/prolactin and other hormones were normal. I have no cysts on my ovaries. No signs of PCOS except my physical symptoms and irregular menstrual cycles. I am shocked! He said he thinks I only have an irregular ovulation pattern, but nothing else.

So, if this is the case, why do I have weight problems, facial hair, IR symptoms, and trouble TTC (including miscarriages)? Apparently, he doesn't know. What do you all think? All these labs and test results can't lie, right? Does this mean I don't belong here?

Thanks,

sweetums · 07-30-2005, 12:29 AM

I don't know what to tell you, hon! I'm sorry that this is confusing you so much right now. I just wanted to give you a hug!

Manders

heather090702 · 07-30-2005, 12:32 AM

I'm so sorry you are having to deal with this. I suggest going to see another doctor, perhaps a different reproductive endo? Good luck!

Heather

Ophelia1920 · 07-30-2005, 12:41 AM

I hear ya! Frustrating, isn't it? Before I got my blood tests results back, my NP told me she suspected I have PCOS, and I certainly have most of the symptoms. I thought hey, all these problems, some of which I've been fighting for 20 years, actually have a cause and I can do something about them! To be cliche, it was like a huge weight was lifted off my shoulders. But wait, no, now all the test results except u/s are normal.
There's another post here somewhere about the different types of PCOS...I've looked and I can't find it. I'm sure it was under "general" or "symptoms" headings.

KatCarney · 07-30-2005, 12:43 AM

Quote:

Originally Posted by SABTeacher

He said he thinks I only have an irregular ovulation pattern, but nothing else.

So, if this is the case, why do I have weight problems, facial hair, IR symptoms, and trouble TTC (including miscarriages)? Apparently, he doesn't know. What do you all think?

In 1990, the National Institutes of Health formed a group to investigate PCOS. Even though no consensus was reached regarding the name of this disorder, which remains controversial to date, diagnostic criteria were determined.

The consensus was that women who present with hyperandrogenism and chronic anovulation, in the absence of congenital adrenal disorders, Cushing's syndrome, hyperprolactinemia, or tumors should be diagnosed with PCOS. (Source: Alternative Medicine Review: Polycystic Ovary Syndrome: Clinical Considerations)

Tests aren't really done to 'confirm' PCOS, since there is no clear diagnostic criteria. It's a diagnosis of EXCLUSION...

Perhaps get a second opinion. (I'm not suggesting that you actually 'have' pcos...just offering some info...)

Also See:

Confirming the Diagnosis: Do I Really Have PCOS?

cec414 · 07-30-2005, 01:58 AM

Hey there,

With regards to the above post, I had a pituitary tumor removed, which did not show symptoms on my blood work for many, many years. My physician is still treating me as having PCOS, now that it is out, but she's still not sure whether I have PCOS either anymore and it just might have been the tumor. I would get a second opinion on your dx, and make sure your hormones are evaluated every 6 months, in case any one of them becomes erratic. Maybe this doctor is right, but as long as you have those symptoms, it means that you need to be monitored and maybe you could benefit from some of the medicines out there even though you may not have "classic PCOS." The thing is, there are many syndromes that resemble PCOS, so you have to make sure you have blood work done often enough in case all of a sudden it becomes quite clear what you have, especially if it is not PCOS. Good luck!!!

SABTeacher · 07-31-2005, 12:02 AM

Thanks to you all for your replies. Since I still have the hirsutism, weight problems, and irregular menstrual cycles (with no evidence of this being caused by anything), I'm going to still consider myself to have PCOS. I have to follow up with a different endocrinologist next month for thyroid nodules. I plan to ask her about her opinion. I will also request regular bloodwork to make sure that the situation does not get worse. In the meantime, I'm going to try to lose some weight and see if that helps the few symptoms that I have.

I have mixed feelings. I was hoping for the tests to give me some answers and explain some of my symptoms as well as my problems conceiving and sustaining pregnancies. I think in a way I wanted to have a reason for my problems so that I didn't think it was due to my own lifestyle. Now, I feel like I have no answers. On the other hand, I should be happy that my labs show that I am perfectly healthy, right? I'll just do what I can do on my end to help with my cycles and to get me in better shape to TTC again.

Best wishes to you all!

Eva37 · 07-31-2005, 12:54 PM

Hi

I have locah - Late Onset Congenital Adrenal Hyperplasia and well as pcos. The symtoms are quite similar. Weight/ hair/ irregular af etc. I got dx with the locah with a short syncathen blood test. Hope a different dr helps you more.

Eva

barneyb · 07-31-2005, 02:17 PM

I haven't gotten a PCOS diagnosis, but have the excess hair, weight gain, irregular periods, skin tags, etc. I couldn't even get my last dr. to consider it even though she did rule out any kind of tumor through an MRI. The only thing they tested was a fasting glucose and I had to argue for 15 minutes to get that, and they did an ultrasound to confirm a fibroid. I got my IR diagnosis by having my aunt's brother (who obviously is a dr.) to do the test. Anyway, my point is that if you believe that PCOS is what you've got, then keep fighting for answers. A lot of my issues have resolved or at least gotten better since I started changing diet for the IR. And the period problems may be due to the type of fibroid I have. But I still have the hair, that's for sure!!