PCOS - Polycystic Ovary Syndrome (PCOS) Message Board

EddieDean · 04-12-2003, 10:57 PM

I have posted on this issue here before, but am more confused then ever and need some advice, if possible.

I am a petite (5'2 115 lbs), 23-year old female who has never had periods on her own. Currently, using birth control, I have them whenever I want. Provera was used to start them up.

Last year I saw a reproductive endocrinologist. He did hormone tests and told me that I do NOT have PCOS and there's just a missing connection between my brain and my ovaries. He says that everything is right up top and everything is right on the bottom, but the two aren't communicating to give me periods.

HOWEVER, I have done lots of research on PCOS and am not convinced I don't have it. I may be thin and my hormone levels may be normal, but I have always had bad skin and have never had a period on my own. Aren't those fairly telltale signs? I guess I'm wondering if there is a surefire way to know if you have PCOS or not, and what to do if you DO have it so you can get pregnant in the future. I am so scared that hesitating now may make it impossible to have a baby in the future, even though all three doctors I have seen assure me that, with medication, it should be no problem. Any words of wisdom would be greatly appreciated!!

Dianek · 04-13-2003, 09:33 AM

If your endocrinologist did hormone tests and told you that you don't have it, I'm sure he's correct. I was diagnosed with PCOS after hormone tests. Usually, the egg cannot break out of the ovary causing the ovaries to become cystic. My skin was clear, but I did have these chin hairs (luckily I'm fair); could stand to lose 20 pounds, etc. You're certainly not overweight, do you have any unusual facial hair?

Have you had your thyroid checked? You might look into that, and I'd certainly would go back to your doctor if you're that concerned about future fertility, if only to inquire about it. Best of luck to you.

BTW, after being on the pill for awhile, my periods returned and have been regular for years...oh, and I do have two children that were conceived even though I had symptoms of PCOS.

Blastoff9600 · 04-13-2003, 09:57 AM

Actually they are finding that even if the hormones check out fine one can still have PCOS. There are some women who actually have no signs whatsoever and can still have PCOS.
Was an ultrasound done? That can sometimes detect PCOS if hormone tests dont show anything. But you have to have a great tech and doctor to look at the ultrasound to know exactly what they are looking for.
Its funny because recently I am in the process of being diagnosed with PCOS. So far the only signs for me is my cycles started getting strange and I was gaining some weight even though I havent changed my diet or activities. We are still waiting for my Testosterone test to come back. The test so far that came back funny was my FSH level. But we are going to retest that here soon to make sure it wasnt just a fluke. Then the next step for me is ultrasound.
My doctor told me that there are some women who may not show signs of PCOS through their hormones but their bodies will show it other ways. It is just a matter of checking everything possible. Even then there isnt a surefire way to tell for sure. Some things it seems are just that way.

EddieDean · 04-13-2003, 02:24 PM

Thanks to both of you for replying.

It's just so frustrating because deep inside, I really do believe that PCOS is my problem. Why else wouldn't I be ovulating? "I don't know" is just not an acceptable answer to me, and that's all the doctor gave me!

I don't have any excess facial hair, and my skin has really cleared up since I was a teenager. He did an ultrasound and didn't see anything, though he had a VERY hard time finding my ovaries because they were so small and regressed from not ovulating. He didn't mention anything about seeing cysts, but he didn't push it too much because he could see I was in extreme pain. See, I also am EXTREMELY sensitive "down there." My gynocologist says my body acts as though it is constantly doing Kegals (sp?) My muscles are so tight that I can't relax them to allow her to take a pap test. She says this is a major sign of sexual abuse, but I certainly don't recall any such trauma! It's very frustrating, because I go through major pain just having a pap test (and that's with the smallest speculum!). I'm not sure if that relates to my internal problems in any way.

She suspected I might have something called Kallmann's syndrome, because I also have no sense of smell. Anyone know anything about this? After doing research, I kind of doubt that's the case because I don't fit the profile for that disease whatsoever.

Sigh. Well, I guess I'll set up another appointment with this doctor and ask him about my results. As I recall, he took tests of my thyroid, hypothalmus, and pituitary and came up with nothing. What's left to look at?

Dianek · 04-13-2003, 02:44 PM

Quote: "My muscles are so tight that I can't relax them to allow her to take a pap test. She says this is a major sign of sexual abuse, but I certainly don't recall any such trauma! It's very frustrating, because I go through major pain just having a pap test (and that's with the smallest speculum!)."

Boy, I'm very surprised your doctor suggested sexual abuse to you like that!

Geesh, hasn't she heard that it can be from just plain nerves? If it makes you feel any better, I was exactly the same way before I lost my virginity. I was petrified of the doctor using the speculum and remember it hurting so bad that he stopped, and I assure you, I was not sexually abused in any way during my life. I think some women are just more sensitive, as you put it. To this day, even after having two babies, I tense up when I have my annual exam. Everyone is different when it comes to exams, and you and I just happen to tense up like that as I'm sure many other women do.