5 replies to this topic

[SendMeAngels]

Today I was formally diagnosed with PCOS. I can't even begin to describe the level of devastation that I am feeling right now. Though I'm very thin, I'm worried I will develop all of the problems that PCOS can potentially bring on. I don't even feel like a woman. Though I love Spironolactone and the partial relief that it's given me, I don't think I can handle this news. It's just too much.

[Green Gables]

Today I was formally diagnosed with PCOS. I can't even begin to describe the level of devastation that I am feeling right now. Though I'm very thin, I'm worried I will develop all of the problems that PCOS can potentially bring on. I don't even feel like a woman. Though I love Spironolactone and the partial relief that it's given me, I don't think I can handle this news. It's just too much.

I'm sorry At least you know so you can live the right lifestyle to handle it. I think I've mentioned it before, but the forum on soulcysters.com is great.

[Iris9]

I am so sorry to hear that

Can I ask, what dictates an official PCOS diagnosis? Is it about having a certain number of the various symptoms? I ask because I have two of the symptoms of PCOS (hormonal acne + mild hirsutism) but not the others.

There are lots of gorgeous, amazing women out there with PCOS -- don't let it make you feel lesser. And as I understand it, PCOS encompasses a huge range of symptoms, and you may never experience the aspects of the syndrome that you're worried about. I'm sure you'll handle this with more grace and strength than you would have ever thought possible. Hang in there and I hope you keep us updated!

Edited by Iris9, 29 August 2012 - 06:43 PM.

[SendMeAngels]

My doctor called yesterday afternoon and said that because I don't exhibit most of the symptoms aside from acne, I don't have the PCOS. I had a blood test, and one test came out slightly off but not enough to cause alarm. And it was taken a week before my period and hormones are generally wonky unless you take a test in the beginning of your cycle. If you decided to get the test, make sure you get it on day 3 or 4 of your cycle in order to get accurate results.

I do know that in order to get the diagnosis, you have to either:

a) have blood tests that indicate something is amiss
b) Have an ultrasound that shows cysts (this isn't very reliable however, many non PCOS women have cysts)

and

a) show access androgens. This primarily comes in the form of acne, facial/body hair, dark patches on skin, skin tags
b) irregular period. Most people with PCOS don't have them or skip them.

and

a) many people with the syndrome are overweight. Experts think this is due to the way their bodies handle insulin.


If you have any of those symptoms (acne alone won't qualify you for it) you should consider seeing a reproductive endrocrinologist. They specialize in fertility disorders. It is best to treat PCOS early because if left untreated, can cause diabetes, heart troubles, some cancers, and infertility.

Hope this helps, and thank you for the words of encouragement!

[Iris9]

That's great news -- I'm happy for you!!

And thanks for the info on PCOS diagnosis; that's really helpful.

I had a bunch of blood work done before starting spiro to see whether my androgens were elevated, and everything was fine (in the middle or low end of each range). However, I take orthotricyclen and have taken it for years, so I don't know what my levels would be if I weren't taking that. My periods are normal, but again, I'm on birth control which I think would make them regular no matter what. Do women with PCOS have elevated androgens and irregular periods even on birth control?

I know that I don't have cysts on my ovaries because I had a pelvic ultrasound for an unrelated reason a few months ago and everything was normal.

I do have hormonal acne (before spiro) and some excess body hair, which I guess are my only two symptoms.

I'm thin...5'9" and 120lbs.

Thanks for the help!!

[SendMeAngels]

The purpose of birth control (for women with PCOS) is to get them menstruating regularly. Ideally, the medication will regulate periods and usually they do. Some forms of birth control (like Yaz) do reduce androgens, much like Spironolactone does.

Because you had irregular periods before beginning birth control (that is a primary symptom of the syndrome) and because you have some acne and hirsutism, I would recommend that you visit your gynecologist or a reproductive endocrinologist (this is ideal) and have a full hormonal panel done around day 3 of your cycle (day 3 of your period). If you are on medications like Spironolactone or an oral contraceptive, your hormone levels will be different than what they would be without them. So be sure to mention that to your physician before going to your appointment.

When they tested me for PCOS, I was on Spironolactone, which is known to make periods irregular and sometimes alters the LH:FSH ratio. My test was also done a week before my period, when my hormones were already a little off because of that. So just make sure your doctor does your tests properly so you don't get wrongly diagnosed.

All women with PCOS are different. It is possible to have it and still be thin. Checking for ovarian cysts isn't appropriate for diagnosing the illness because even women without PCOS can have cysts. PCOS sounds a little intimidating, but if you nip it early you will greatly reduce your chances for complications later in life.