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[pilgrimsoul]

I was just diagnosed with PCOS today.  I don't know much about it other than the basics my OB/GYN explained, and what I've read online.  Does anyone here have it?

[sikora]

Two of my nieces have it.  It is supposed to decrease your fertility and increase your risk for type II diabetes.  One of my nieces has a 3 year old boy, however, so it's not a full proof form of contraception. She also tends to ignore it and refuses to get her blood glucose tested.  Well, to be fair, she doesn't have insurance.

The other niece has to take Glucophage to manage her blood glucose.   

Both young women are on the heavy side, and have a difficult time managing their weight. 

I also struggle with my weight, and had extremely rare and irregular periods for a long time, from 18-35 years of age.  I was screened for PCOS, but was negative.  At any rate, I started having a regular menstrual cycle when I started taking psychiatric meds. 

[pilgrimsoul]

My Dr. prescribed Glucophage, but hasn't tested my blood glucose.  She did mention that it could lead to infertility, which is a huge concern for me because my husband and I may try to start a family in the next year or so. 

I've been overweight for years, and have always had a very difficult time losing.  My Dr. said that the glucophage would most likely help with that. 

I was just blindsided by the diagnosis.  I thought I simply had a cyst that ruptured.

[titian]

I have PCOS as well. It has affected the timing of my cycles, hair growth, cholesterol levels, and insulin response. Like Sikora, I tend to only have regular cycles when I am on psychiatric meds (antidepressants). No one has ever explained that connection. I do not want to have children, so the fertility is not so much of an issue for me.

There is a group with Penn State/Hershey Medical Center who research the topic. I have know other women with PCOS who did manage to get pregnant. Some used oral drugs, others used injectables, and a couple just got lucky. Many of the women with PCOS struggled with weight, and a few did not. You can find more information on PCOS and fertility at the Resolve website. Losing some weight may, in itself, make you more likely to get pregnant. Glucophage treatment may help with that. Good luck -- you are defniitlely not alone!

[sikora]

A PCOS story.  A friend of mine from grad school's wife has PCOS.  That was okay for the most part, because they weren't planning on having children.  They didn't use birth control for five years. Then she started having symptoms she can't explain.  She went to the doctor, who after examing her, said, I can't figure out what is wrong here.  Let's do a number of tests, toss in the pregancy test just to rule it out ....

Child is now 14 years old.

[macaroon]

Hi Pilgrimsoul -

I don't exactly have PCOS, but I have what my old gynecologist (who is one of the world authorities on ovarian pathologies) called pre-PCOS.  I was blindsided as well.  I was 23 and recently married, and hoping to start a family soon.
My androgens are higher than normal, my cycles are regular but looooong, and I have polycystic ovaries.  However,  I don't have the hair issues or the diabetes, which is arguably the most serious symptom.  I'm also not infertile.  One reason - I get a ton of exercise and I'm not overweight.  I've gotten warned up and down from my doctors  that I really, really, really can't allow myself to gain anything.

So, the fertility issues are real.  The previous posters are sugar coating this a lot.  While PCOS isn't reliable birth control, most women with PCOS who want children end up getting treated for infertility.  It's expensive and time consuming.  But the good news is that if you can manage to get your weight down, which I understand is extremely difficult, the fertility issues AND the PCOS sometimes disappear.

It's good that you are thinking of starting your family in a year.  Perhaps you can spend the year being really ambitious with getting into shape?   Train for a triathlon, perhaps?  For myself, I've found considering the cost of IVF to be very motivating.  If one round of IVF costs $15,000, and I get up at 5AM to run 4 times a week,  it's almost like I'm getting paid $75 every time I drag my butt out of bed to run.   For my body, I know this helps a lot.   When I slack off on the exercising, I stop ovulating. 

Good luck!

[volfan]

I have PCOS. I was diagnosed after I went off BCP and had various gyn issues. I have always been overweight, which can be a classic sign of PCOS. I found that taking Glucophage (also known as Metformin) was quite helpful.

PCOS greatly affected my fertility. I have had difficulty getting and staying pregnant. The best thing I ever did was to hire a nutritionist and get serious about going to the gym. While losing weight is difficult due to the PCOS, it is not impossible. I found that losing 20lbs was enough to help me get pregnant. I also found that reducing carbohydrates and increasing protein in my diet helped. You might also consider acupuncture in addition to diet and medication.

Here are a couple of book suggestions. (Check them out of your local public library, unless you really want to own them.)

PCOS and Your Fertility - by Colette Harris with Theresa Cheung
The PCOS Protection Plan - by Colette Harris and Theresa Cheung
A Patient's Guide to PCOS - by Walter Futterweit with George Ryan

I would also recommend that you get a referral to a Reproductive Endocrinologist. They can help you with your PCOS and fertility issues.

Good luck!

[kilpikonna]

Two of my friends have PCOS.  They both have irregular cycles; one has managed this with birth control, the other just doesn't menstruate.  One of them has been in fertility treatments for about a year, and it's been pretty rough on her emotionally, but the other physical effects are minor for her (slight hirsutism, no weight problem); the other is content not to have kids, but has the other problems (weight struggles and possible signs of pre-diabetes).  So I guess my conclusion is that expression of the syndrome varies.

Best of luck to you and your partner.

[sikora]

Now that I think of it, both of the women I have known with PCOS who became unintentionally pregnant after having lost considerable weight.

[indianalitchick]

I was diagnosed with PCOS about a year and a half ago.  I'm overweight and on the border of being pre-diabetic, but am on metformin, watch what I eat, and work out 3 times a week.  I don't have cysts, but I do have problems with acne and hair growth.  The fertility issue isn't a concern for me--I'm 39 and single, so I don't forsee having kids anyway.  Watch the carbs (especially the refined carbs--whole grains are fine) and sugar (especially high fructose corn syrup).  Eat protein, but keep an eye on the fat levels in food. 

[sporosarcina]

My wife has had PCOS since she was in college.  The condition doesn't make you overweight, but like many metabolic or hormone related conditions it make weight control much more difficult.  There are also some secondary conditions that can occur due to androgen ("male" hormone) overproduction: secondary body hair, changes to hair texture, and difficulties with fertility.  There is also increases in heart related problems and blood sugar control, but this is also tied to weight control.  My wife has very little in the way of secondary hormone problems, but rather severe weight control issues and fertility issues.  The fertility issues were so severe that when combined with my own thyroid issues that we ended up adopting.

[onion]

I have PCOS, and it's a very confusing and mysterious illness.  From what I understand, it's more an umbrella diagnosis and that there are many different "kinds" of PCOS.  I'm what's considered a "lean" PCOS, and my biggest symptom is insulin resistance or "pre-diabetes."  I don't have cysts and I don't have hirsutism or an irregular cycle or any of the other standard markers of PCOS, so it took forever to get diagnosed.  I've been on Metformin for years, and it worked wonders at first--and then my thyroid stopped working, which is another story altogether.

If you haven't found it yet, there's a message board for women with PCOS called www.soulcysters.com, and those women know everything and have a lot to offer re: fertility treatments.  I've never wanted children so that hasn't been an issue for me.  Good luck--it can be confusing and difficult to wrap your head around at first, but you'll figure out what works for you in short order.

[mj_romo]

I have PCOS, as do both of my sisters.  It can manifest with a whole host of symptoms, weight control being a major one.

It took me about 18mo to get PG, and that was with the help of Eastern medicine because my husband and I weren't ready to go the fertility drug route.  I hadn't had a cycle in six years, and then in 18mo, I only had 10 cycles, which means they were longer than normal (about 40 days each).

Since having my daughter, my cycles have evened out - 6 cycles in 6.5 months, but other symptoms (facial hair) have increased. 

I strongly second checking out www.soulcysters.com; it's an excellent source of information.

[rachaeltalcott]

I've done a little research into the PCOS literature.  As Onion says, the disease is not well understood.  There is a correlation with hypothyroidism, so it would make sense to get a TSH test, especially if you're planning on trying to get pregnant.  Hypothyroidism is common, can itself cause infertility, and is easily treated.  There is some controversy over just where the cut-off for "normal" TSH should be.  TSH over 5 is considered hypothyroidism, but between 3-5 is marginal, and some argue that anyone over 3 ought to be treated.  I also remember reading a study about PCOS and vitamin D.  It was a pretty small study, but women with PCOS and infertility were given vitamin D, and even within a few months there was an effect on pregnancy.  The advice to exercise and lose weight if possible is sound.  Both have been tested and shown to have beneficial effects on fertility in women with PCOS. 

[oseph]

I was diagnosed with PCOS by one doctor, "maybe" PCOS by another.  Was blindsided too...I thought I was "up" on medical problems, but I didn't know anything about PCOS.

Tried for a year to get pregnant.  Second doctor recommended trying for a year before beginning Metformin.  I attempted to lose weight...no luck.  I wasn't terribly overweight, probably about 15 pounds.  But my hormone levels were off, cycles irregular, etc.

I also was very stressed out about the infertility, my dissertation, the job market.

Six months into the year of trying, my dissertation started going really well.  I also came to terms with the possibility that we'd have to go through the adoption process.  I started exercising regularly.  My stress levels went down, and probably something changed with my cortisol levels.

Eleven months after I first started trying to get pregnant, Mr. Oseph and I decided to give up on the baby goal, temporarily, while we focused on finishing and getting jobs.  We figured we'd get settled somewhere, work for a year or two, then start the adoption process if my fertility still looked grim.  We decided I should stay off birth control to try to give my body some time to regulate itself, and also on the off-chance that I got pregnant.

Exactly a year after I originally went off birth control to try to get pregnant, one day after I canceled an appointment with a fertility specialist because we had decided to give up for the time being, and two days after scheduling five campus interviews, I took a pregnancy test just for the hell of it, and it was positive.  I carried the baby just fine, although I did develop mild gestational diabetes (and of course there are PCOS and diabetes links), which was easily controlled by diet.

My doctors think that getting my stress level down helped me.  I do want to stress that I may not have had PCOS, although there do seem to be some links between PCOS and cortisol levels, and mine went down as I stopped freaking out over the infertility problems and started doing well with my career.

I also want to stress that it was really annoying when people told me, during the year of no baby, that everything would work out fine, I'd get pregnant.  Often no, it doesn't work out that way, and the thing that really helped me chill out was when I accepted that I might not end up pregnant, and that was okay, because we could adopt, and Mr. Oseph and I were okay with adoption.  Actually we're still okay with it, especially the more we thought about how nice it would be to help out an existing child who really needed it, and we had already come to the conclusion that we would not pursue intense fertility treatments; we would adopt instead, even given all of the hardships that go along with that process.  So we still may adopt when we are ready for another child.

Best of luck, and I hope you receive the support you need, not the support other people think you need.  I finally started telling my friends and parents and in-laws that what I needed to hear was that it would be okay if I never could get pregnant, not that I would get pregnant some day.