Hail, cysters!. (A thread for those with PCOS)

Miscellaneous and Personal Stuff I Must Share
1

Over here, I mentioned that I have a condition called PolyCystic Ovary Syndrome. I shouldn’t have been surprised when two other women chimed in with the same diagnosis as well, but I was.

Considering that anywhere from 6 - 10% of women of child-bearing years in the US are afflicted with PCOS, I thought it might be nice for us to gather together and complain abo- ahem, offer support and advice to one another. Perhaps we’ll end up taking it to email, or, if there’s a great enough interest, I could see about setting up a message board.

For those of you not in the know, PCOS is actually a misnomer. The disease is fundamentally linked to hyperinsulemia and insulin resistance. Because insulin is a “master” hormone, the overabundance of it wreaks havoc with other hormones. Some of the symptoms include hirsuitism, acne, acanthosis nigricans (brown patches on the skin, esp. the back of the neck), male pattern baldness, obesity, irregular or missing periods, high cholesterol and blood pressure, infertility, a risk of heart attack about equal of what men have, and ovarian cysts. There are also some links with clinical depression. Two of the give-away symptoms of PCOS are being overweight and carrying most of the fat around the waist. It’s almost as though someone sat down and decided to come up with a disease that was tailor-made to make women feel unfeminine.

There is some good news out there. Low carb diets help mitigate the symptoms, and some of the new medications out there can help lower insulin resistance and make it easier to lose weight. There are some great doctors out there that can help.

I was diagnosed about 10 years ago, when I was 19. Since then, I’ve been astonished at the number of women I’ve met with the same ailment. I’ve heard theories that PCOS can be blamed on the number of chemicals that mimic human hormones now in our environment, on genes, on poor diet, and on gynecological imbalances. For me, I think it’s a combination of genes (my grandmother and I share a striking resemblence, including body type and fat distribution; I think she had PCOS in a mild form.), ingrained eating habits, and a sedentary lifestyle. Most other women I’ve talked to share the same feelings.

So, here’s the place to share your story, swap information, get some moral support, or just do a little sounding off.

2

I haven’t been to a doctor yet (Hopefully I will go within a month), but I have many of the same symptons. I’m torn. On the one hand, I do NOT want to be diagnosed with this disease. Who wants to have a stupid disease?
But on the other hand, if I know what is causing the problems, I can fix it. I want to fix it. I want to fix this.

3

By all means, PGL, go see a gynecologist and/or a reproductive endocrinologist. It might be that you have something else (they thought I had adrenal hyperplasia for a bit), or they might confirm your suspicions of PCOS. Either way, you’ll have access to the tools that will help you cope with the disease.

4

steps in, waves, and says “Hi, I’m Lsura, and I have PCOS.”

I’m 27, and got my diagnosis about 6 months ago. I haven’t managed to tell my parents yet, though one of my brothers does know.

I’ve been put on the pill to regulate my periods, and we are investigating further treatment. At the same time, I watch my diet closely, and I exercise regularly, which helps with the weight gain. phouka is right-it does make you feel unfeminine. In fact, what finally drove me to the doc was not the lack of periods, though I knew that was unhealthy, but rather the thinning head hair, and facial hair.

At the same time, my OB/GYN has not seen a lot of cases, so with his help, I’m looking for someone who is better versed in treatments, especially newer ones.

I had a very hard time when I was diagnosed. While I wouldn’t call it a depression, it sent me into a funk, and I don’t do that often. At the same time, I was relieved to know that there was something actually wrong, not “just stress”

pepperlandgirl go to the doctor. I avoided it for years, and I could have started treatment years ago, which would have been better for my health in general.

5

I was just recently diagnosed with PCOS. Like Lsura, I had a very hard time accepting it at first. Now I’m glad I know WHY I have all these symptoms, especially the weight gain and the hirsutism.

I started a low-carb diet a couple of months ago (although the holidays pretty much pushed me right off the wagon), and it was working pretty well. I still have about another 50 lbs to lose.

6

Another cyster checking in…

I was diagnosed about 12 years ago, before the insulin connection was well known. I have been on glucophage for 10 months now with good results in terms of a more regular cycle, but no real change in weight. I have lost about 10 lbs after 2 months of half-assed low carb. Last week I got a treadmill and have walked 25 minutes every day since. Here’s hoping that helps!

Great job explaining PCOS, phouka. And PLG, get thee to an informed gynocologist. If you can’t find a reproductive endocronologist, a gyn who specializes in infertility will be a good choice.

7

Um, dumbass question.

How does one know that you have this? I might, but I don’t know. And I have no doctor. sighs

(If I have this on fucking top of having lupus, I may just give up and shoot myself.)

8

Nope, no shooting yourself, Falc. You’re too important, cool, sweet, and a thousand other words I don’t have the time to type in.

It used to be (about the time I was diagnosed), the diagnosis was made by taking a biopsy of one of your ovary. Thankfully, my doc skipped that and decided by eliminating the other possible diseases.

Generally speaking, if you are overweight and carry your weight around your waist, if you have problems with acne, unwanted facial hair, and irregular periods (especially long, heavy periods with lots of space between them), and if you have hyperinsulemia (produce too much insulin) and insulin resistence (your body doesn’t react to insulin as well as it should), you’re a shoe-in for PCOS.

Again, generally speaking, docs often confirm the diagnosis by giving you a fasting Glucose Tolerance Test, a full cholesterol profile, and probably checking your levels of testosterone and other androgens.

IANAD, Falc, but if you have PCOS, I would be shocked if it weren’t aggravating your lupus and vice-versa. There’s also a link between PCOS and clinical depression.

They know a lot more about PCOS than they did five or ten years ago. Some of the insulin-sensitizing drugs are being used to treat it, and it looks like low-carb dieting really helps. One of the sites I hit occasionally for more news is http://www.pcos.net. It’s very helpful, and there’s a small database for PCOS-knowledgable doctors.

Hie thyself to a reproductive endocrinoligist, Falc, and get checked out. It could mean a huge improvement in your health and years added on to your life.

9

Ladies, what low carb approaches have you/are you trying? The first time I tried, last year, I did the Heller’s Carbohydrate Addict. It worked pretty well for the first couple of weeks, and then I crashed out on my blood sugar in a very unpleasant way. Also, their list of foods sometimes didn’t make sense. It’s okay to eat M&Ms, but not okay to eat carrots?

10

I am doing CAD (but sorta half-assed). I agree with you about some of the illogic, though. Plus lots of low carb diets are high fat. I will not make something with a cup of heavy cream in it.

11

Phouka - I’m curious as to what the cholesterol profile is on this? (BTW, I don’t have this, I’m just curious)

12

See, here’s the problem. Last time it was run (around a year ago), my glucose was ok. My cholesterol was a little high. My blood pressure is also a little high, but not by much. (Like 130 over 80)

Problem is…I have a HUGE family history of high cholesterol and diabetes. So any changes there are probably from that. Or from the fact that I’m over 100 pounds overweight. (Which, IMO, is carried everywhere.)

Oh, and this?

Not bloody fucking likely. sighs again

13

One half bald, hairy faced, overweight PCOS person checking in.

I hate having this crap. Especially along with Hep c, diabetes and high bp. But if I can live with this ** Falcon ** so can you ! You check out early, I’ll follow and kick your ghost butt !

I found out about 14 years ago. I did not have a period for 12 years, at all. No ovulation.

I have developed actual cyst now in both ovarys. And the usual treatment for that is birth control pills. But I can’t take those because of clotting.

Excuse me, I’m going to sit here in the corner and wait to see what part of my body is going to all apart next.

14

My understanding, Falc, is that PCOS can cause obesity, hyper-insulemia, and insulin resistance, and that any of those three can in turn cause PCOS. Not every overweight woman has PCOS, and not every woman with PCOS is overweight, but there’s a pretty big correlation between weight and PCOS. It’s certainly worth looking into.

ahem

Sweet, funny, witty, sparkling, friendly, affable, lovely, darling, eloquent, supportive, insightful, humane, cozy, bright, warm, sexy, clever, daring, brave, and wise.

That’s the first twenty off the top of my head. Don’t make me pull my thesaurus out. :wink:

15

Ayesha, have your tried glucophage instead of birth controll pills? I had tried BCP and progesterone and didn’t like either. The gluc, on the other hand, seems to have regulated my cycle well and has controlled my blood sugar/insulin so that I don’t get those “I am going to kill someone I am so hungry and cranky” spells. Using gluc for PCOS is off-label, but it is becoming pretty standard, I think.

Falcon, my blood sugar was normal for the first 10 years of PCOS and only crept up to high normal when I was in my late 30s. The key to diagnosis, IMHO, is insulin, not blood sugar alone. It is too early to know, since the insulin-PCOS connection was only researched in the past few years, but I hope that controlling my insulin now will help me avoid becoming diabetic. That is why you need to get tested and get treated. Also, not having periods puts you at high risk for uterine cancer.

16

Brynda,

I have taken Glucophage, but those days are over for me. My doctor will not allow me to take it because he is worried that it will do further damage to my liver. The hep has already damaged it. So I am now on glipazide.

I have to be very careful of any kind of med I take now.

17

Ayesha, is glipizide a diabetic med as well? And more importantly, is it working for you?

18

Hear, hear!

19

Yes it is, and yes, it is working ok. my sugar is under control. I have even learned it’s not sweets that that throw me so badly. It’s starches, including of all things beans !

20

One of my guy friend’s ex-gf was diagnosed with PCOS about 2 months ago. Out of the blue she was crippled with lower abdomen pain. During her stay at the hospital, the doctors thought she had, in addition to the cysts, something called endometriosis [sp?]… which is when menstrual blood escapes the uterus, somehow, and latches onto other organs and tissues, eating away at then and suffocating them. This condition generally causes severe fertility problems.

When they went in to clean the gunk out or something, they discovered that her problem was only the cysts, and therefore much less severe. She stayed in the hospital all through finals and i think she’s doing okay.