Question

animal1051 · 08-08-2003, 01:42 AM

Hey,
I have a couple questions for people who are probably more informed than myself. My girlfriend has PCOS, (maybe). SHe was diagnosed her senior year of high school by blood work. She didn't have a period for several months and gained some wieght. Now she is skinny and gorgeous but has alot of pain in teh pelvic area. She thought she had endometriosis cause she is hypo-glycemic too but a laproscopy found nothing. SHe doesn't have any cysts either, but she is very worried about the symptoms of PCOS like hair growth and wieght gain and all that. I know that not everyone experiences all the symptoms of PCOS? HOw many people have insulin problems? If you had wieght gain did it start before you were diagnosed or did it ever start after you were on medication or years later? What is the average age to start getting symptoms? What kind of doctors or books do you recommend to help with?
She feels that this disease is i guess an affront to her woman hood because of the testerone levels and things and feels she is burdening me with it and really the only thing that really worries me is how much it would upset and hurt her. I would appreciate any help. Thanks a lot.

SoulHubby · 08-08-2003, 02:02 PM

Hey animal!

First, Welcome to SoulCysters! You've found a great resource here.

To answer some of your questions- the symptoms of PCOS vary as much as the people who have it. Some have weight gain, some have many other symptoms. Insulin resistance seems to almost universally go hand-in-hand with PCOS, although there are some people who have PCOS with no insulin problems.

The first thing I would recommend is to get her to a reproductive endocrinologist who should probably order a couple tests - ultrasound to check for cysts (if she hasnt had this already) and a fasting glucose (and insulin) tolerance test. The results of this test would help to reach a diagnosis of PCOS.

If it turns out that your GF is insulin resistant, the doctor will likely prescribe metformin (gucophage) after doing a liver test. One of the problems with met is that you have to have fairly normal liver function, otherwise the consequences could be, well, bad. But get that far first, then we can go down that road.

In terms of when symptoms start occurring, I think it's hard to say, because so many people have PCOS but are either not diagnosed, or misdiagnosed. It took my wife several years to find a doctor who finally made an accurate diagnosis (which is REALLY very sad, and I'm still angered thinking about the doctors who mis-diagnosed her). You say your GF was diagnosed in HS, however you seem not to be sure if she has PCOS... I'm not sure what you mean then by this diagnosis.

In terms of reading material, there are a couple of standards that I'd recommend.
PCOS: The Hidden Epidemic by Samuel S. Thatcher M.D. Ph.D. - this is a very in-depth book that discusses many of the issues in great detail.

Living with P.C.O.S.: Polycystic Ovary Syndrome - this is standard reading for anyone who has PCOS.

If the diagnosis turns out to be PCOS and she is insulin resistant, The New Glucose Revolution: The Authoritative Guide to the Glycemic Index--the Dietary Solution for Lifelong Health is a great book.

I understand completely how your GF feels about testosterone, etc... best advice I can give is to find a GOOD Reproductive Endocrinologist in your area who is familiar with PCOS (There are resources on this site to help you find PCOS-friendly doctors). You're already doing a great job by finding this site and supporting her, I'm sure you'll do fine.

Post an update, let us know how things are going when you get a chance.

-=\Eric/=-

animal1051 · 08-08-2003, 03:02 PM

Hey,

Thanks for the reply. I suppose the diagnosis is correct, she just had a laproscopy and found no cysts. Blood work was done three years ago and that is what the diagnosis is based on. I think she is going back to the doctor soon and i'm going with her and i want to kind of see the exact results of that blood test. THe doctors have told her she was hypo-glycemic and she does need to eat every couple of hours or she can get tired and cranky but i think a test would be helpful too. SHe has and read the PCOS book by dr. thatcher. Sometimes i think he tries to be a bit negative in the book just the way he labels things but thats just my opinion.
She had a great doctor for a while but he went to teach at Duke and now she has a young doctor who is really niced but not quite as experienced so hopefully we can find another good one. She's been on birth control pills and a half dosage of spiralactone stuff for a couple years. SHe also has severe pelvic pain all the time but no cysts. Doctors think it could be instestitial cystitis which is a bladder disease so she has to go to a urologist but she's also going to a chiropractor soon, i'm hoping its just a pinched nerve kinda thing.
I guess i keep the hope that she doesn't really have pcos but i wouldn't risk her going off the medicine to find out for sure. I just get frustrated cause i can't fix it or solve it. I can tell it'll be one of those things that is always lurking in the shadows because you never know when symptoms could get worse or show up. I hope they never do and i have a feeling they might not but i feel i have no control. I wish life were more like a fairy tale where i could be presented with a perilous quest and at the end of it i could get the cure but no such thing exists. I just wish i could sacrifice or do something to take it away from her.
Thanks for all your suggestions though.

shorty1kanobi · 08-08-2003, 03:29 PM

Hi,
Soul Hubby answered many of your questions (Great job by the way) but there are a few things I wanted to address.

First of all, thank you for caring enough about your gf to want to educate yourself. As a woman with PCOS, I cannot tell you how valuable that it to us!

As for the weight gain, not all women with PCOS experience the same symptoms, so not all gain the weight. It is true that most of us are misdiagnosed for years until we find out what's really going on and in the meantime the hormones wreak physical and emotional havoc. I gained almost 25 pounds a year for 4 years, no matter how hard I exercised. I went to my doc and received the std answer - lose weight. I talked with my doc about symptoms I had and those were never correctly addressed.

The weight gain doesn't come as a result of the medicine...from what I've read, its more a result of your body processing things incorrectly. (its a vicious cycle...insulin problems can contribute to weight gain, and fat cells generate their own insulin. ugh)

I would recommend you refer your gf to this site if she doesn't already know about it. I've learned SO much!

Also, a quick word about normal vs. common. Pelvic pain is common, it is NOT normal and should be addressed.

SoulHubby · 08-08-2003, 07:02 PM

I know this is prolly going to open up a can of worms, but here goes.... generally speaking birth control pills are not a real good thing to work into the mix for PCOS unless its a micropill. I cant stress enough here the importance, if you suspect PCOS, of finding a doctor who is well versed in PCOS and its treatment. My DW had problems with extended bleeding (for months and months on end) after a misinformed doctor put her on inappropriate medication.

I know what you mean about "one of those things lurking in the shadows" ... thats why I've been so vocal here about finding the right medical care. And remember, in your research here, and elsewhere, you're (generally) dealing with people like me, who are their own best advocates (which I would encourage you to be for your gf) - but are not doctors. Every case is going to be different, all we can do here is offer advice based on our best knowldege, and go from there. You'll likely get conflicting information, but the more reading you do and the more research you do, the better prepared you'll be when you do go to the doctor. Ask questions. If you dont understand what something means, ask. Maybe even go in with a list of things you want to ask before... even if you dont use it during the appt, the fact that you wrote it out will help you to remember everything.

Hope everything works out for ya!!

-e

shorty1kanobi · 08-08-2003, 07:27 PM

Soul Hubby is Absolutely Right!
P.S. there is information listed in "Newbies Start Here" that I found to be SO valuable. It includes lists of tests that the PCOS woman should ask for in order to get the best information and treatment. Also, when picking a doc I've learned that you are well within your rights (and perhaps responsibilities) to ask if your doc is knowledgeable about PCOS.

I was on the pill almost 9 years (I'm only 25). It masked a lot of my symptoms though many were still there, and it is known to make insulin problems worse.

And, PCOS is not just an infertility problem or minor thing to deal with. It needs regular treatment through diet, exercise and most often medication, but it needs to be the right medication.