T O P I C R E V I E W
Member # 5536
posted 12-04-2001 09:54 PM
i dont really know what it is? im really scared because my OB told me i wasnt able to have children in the future, and i dont know what to do. Im only 17 how could this happen to me?
Member # 2057
posted 12-05-2001 05:32 AM
Do you mean polycystic ovary syndrome?
I did a quick google search on it, and I found a few sites which might be some help. Living with PCOS (the excerpt from the book of the same name seemed very useful for an overall description of the condition. What is Polycystic Ovarian Syndrome? Polycistic Ovary Syndrome Polycystic Ovarian Syndrome Association, which looks like it could be useful for providing support, rather than just a medical definition of the condition.
I hope those are of some help. I think it would be useful to find out as much as you can now, so that you understand what is happening. Finding a support group close to home might be helpful, just to let you know that you aren't the only one. And make sure that next time you go the OB, you ask him about everything you want to know. Make a list of questions, and actually use it.
I really feel for you, because this must be very difficult. I hope those resources are of some good.
------------------ You wanna save humanity, it's just the people you can't stand-John Lennon
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[This message has been edited by BJadeT (edited 12-05-2001).]
[This message has been edited by BJadeT (edited 12-05-2001).]
Member # 1896
posted 12-05-2001 11:20 AM
first of all, take some deep breaths.
You're not alone gal. Several people here at the boards have PCOS, too (including me), and the adorable son of our lovely poster negative nancy is living proof that PCOS doesn not mean that one is infertile.
In fact, another poster with PCOS here got pregnant while on the pill. So try not to worry too much about infertility right now (even though I can of course understand your worries very well) but try to concentrate on making sure that you've been properly diagnosed and that you now get the right medical care to bring this all under control. You can worry about fertility once you want to start family planning, and while many women with PCOS can get pregnant spontaneously (and are apparently at a higher risk of getting pregnant while on the pill), some indeed need a bit of help from a reproductive endocrinologist. - But really, it is NOT true that women with PCOS are "infertile".
PCOS might sound scary on its first diagnosis, but there is lots you can do.
First of all, call your doc and get back to him/her and ask ALL the questions that you have. I know that in the aftermath of the dianosis of a disease you've never heard about, you don't even know where to start.
How were you diagnosed? Based on an ultrasound and your symptoms or a blood test? If it was only the first, make sure that you request a blood test. PCOS is a very "in" diagnosis with OB/Gyns at the mo, and while multiple cysts on one or both ovaries can be an indicator of PCOS, only a blood test can fully determine whether you really have the full blown disorder.
The gals at pcosupport (the PCOSA, BJade llinked to them, thanks BJade) have tons of info on their website on being properly diagnosed. If you feel that your OB/Gyn isn't qualified enough and has no real clue about PCOS, make sure you go and see a gyno or endocrinologist specialised in PCOS.
Once it's been established that you really have PCOS, make sure you get medication to get your period on track, amybe some medication to get rid of the extra hair if you want to, start working out and consider loosing weight with the guidance of your doc, too, if you have weight issues. Weight problems can not only be a symptom of PCOS, they can also make the condition worse, for some women, loosing weight is a first step to getting regular cycles by themselves.
In any way, dearie, don't despair. You didn't do anything to get this. Check out the sources BJade linked to, and please, make sure your doc is honest and open to you and has a clue about all this. (S)he shouldn't leave you as scared and worried as you seem to be now.
And please, feel free to come back with any questions you might have. I'll do my best to answer them.
Caro ~Scarleteen Sexpert~
"Through repetition the magic will be forced to rise."
Member # 5640
posted 02-17-2002 12:43 PM
Bump for renewed interest.
"Conversation, like certain other portions of anatomy, works best when lubricated." -- the Marquis de Sade (
Member # 6912
posted 02-17-2002 12:58 PM
i've read through the sites listed above, and from what i can remember none of them said anything about it being hereditary. but i've been told before that it is.. is this a myth or is this syndrome hereditary?
Member # 961
posted 02-17-2002 03:31 PM
leslee, as far a I know, that's a theory that's still being considered.
Member # 7065
posted 02-20-2002 11:50 PM
You're definatly not alone!! I was 15 when I was told I had PCOS, (19 now) and I went 5 years undiagnosed. It took 6 doctors and 3 years to figure out what was wrong with me. The doctors here aren't very bright.. Anyways. Don't believe them when they say you can't have babies, there is allot of PCOS patients that do have babies, most of them use fertility drugs. When your finally pregnant, it's hard not to have a misscarriage, I've had one, it wasn't fun either.
It all depends on your hormone levels on getting pregnant, and don't let PCOS get out of hand. Your doc/ob/gyn should have put you on some sort of birth control or hormonal drug to control cyst growth and your hormones, I'm on Levlen (BC) Sarfem for the moodswings from hell, and Cataflam for the pain. Most PCOS patients form the male hormone if they are over weight (it sounds weird but believe me). If you are over weight, it does help to lose weight, although it is very hard. I'm over weight, and trying to win the weight battle hasn't been easy. I really hope that your PCOS doesn't get out of hand, cause if it does, it can literally ruin your life and make you change your every day things, trust me on this. And don't let the not being able have a baby thing the doctor told you get to you, it's hard not to think about it, but there is fertility drugs now, you know by the time you're 25 they'll be all sorts of new ways of getting pregnant or getting help of getting pregnant, and maybe by then somebody will find something more to help PCOS patients. If you have very irregular periods or in pain when your not on your period, keep a little diary of it, and show it to your doctor when you have check ups. If your on the BC, make sure you take it on time everytime. Also tell your doc about your family history of Cancer or female reproductive disorders or diseases, this also helps your doctor to keep an eye on anything else that may affect you. Cancer and high blood pressure is a big factor on both sides of my family so I have to have blood test once year for Cancer and blood work, and every 2 months I have blood test to check hormones, thyroid, and Glucose. I've had two surgeries to remove cyst w/in two years. The first one when I was 17 and the second when I was 18. The first surgery they found 23 cyst in all on my ovaries, and the past cyst that had ruptured, the liquid in them had turned in to a glue like substance making the ovaries attatch themslves up against my intestines, muscles and other organs in there. That can be very painful, and it's very painful to recover from. the PCOS patients that have allot of pain when they are not bleeding often get that surgery cause of ruptured cyst. I don't mean to tell you this to scar you in anyway, I'm telling you this to inform you. My life has dramatically changed since I was 15. I was missing so many days my senior year in highschool for to much bleeding (hemorraging periods) and pain that the school let me drop out and get my GED, Prom night, I was at the emergency room for 4 ruptured cyst and a bacterial infection (I was allgeric from the gel that was for the infection) If you experince a very heavy period, there is a new sanitary product out, it's cold "Instead" it's a cup that goes into the vagina and sits below the cervix behind the pubic bone comfortable, TSS is not associated with the "Instead" less odor (yay), less chance for infection, and reliable. Their website is www.softcup.com you can find the product at Target, Walgreens, and CVS/Revco. woa I typed allot... anyways, just don't be scared, you're not alone, and never say you can't get pregnant until you try.
Member # 7065
posted 02-21-2002 11:07 PM
I've been doing allot of research on this disorder/syndrome for awhile now, looking through medical books and asking different doctors.
Before the disorder/syndrome was called Polycsytic Ovarian it was called Stein-Leventhal, here is the defintion of it from one of my college medical books which was published in 1967, so the word PCOS hasn't been around that long:
**Stein-Leventhal Syndrome - A rare condition of sterility, absence of menstration, and hairiness, in women having enlarged ovaries with many cysts. Treatment is surgical removal of a wedge shaped setion from each ovary.**
The surgery above is still done, but not often. From what my doctor told me about this procedure is they remove a wedge of each ovary contianing a hormone or gland, and this helps the ovaries from forming as many cyst.
This is about all kinds of Ovarian Cyst, also from one of my medical books.
**A cyst is a sac containing fluid or mucoid material. Several varieties may arise in the ovary. Small cysts sometimes disappear w/o treatment, but if they enlarge or become twisted they must be removed. A cyst that has a slender stem (pedicle) may twist tightly around the stem, causing intense abdominal pain that may arouse suspicion of appendicitis. (this often happens with PCOS patients)
The ovary, as well as being producer of eggs, produces sex hormones. The ovary secretes estrogen, necessary for feminine development, and progesterone, which is necessary for preparing the uterus for pregnancy. Some tumors of the ovary may cause excessive hormone production. It is not possible to determine the exact nature of an ovarian cyst until it has been removed surgically and examined under a microscope.**
my opinion and from research I've done on Stein-Leventhal/PCOS (same thing) is that it does pass down through heredity. Before doctors were fully aware on this syndrome many women were having hystorecotmy (sp), my mother, her sister, and my grandmother's sister all had cyst, early menapuase (talking about the 30's) and had hystorectomy, my grandmother's sister (my great aunt) was not successful on getting pregnant and had periods from hell like my mom and her sister and me. As for my grandmother, she must've been the luckiest one, she went through puberty, conceiving, and menapuase w/o a problem. So in my family, I do think I got it from heredity.
I'll post more on this as I can everyday.
Member # 41
posted 11-21-2002 03:27 PM
I've got PCOS as well... seems it's relatively common. I understand what you're going through, tho-- just make sure to take care of yourself now (because having PCOS puts you at high risk for all these bad things like diabeties and heart attack later in life) and try to not get too worked up about it. They're finding out new things every day.
Member # 9051
posted 11-28-2002 02:33 PM
Awhile ago i had a cist on my overy and it caused terrible pain. The birth control pill took care of it. Although after a few months pains came back, they were not a cist. We never found out what they were. They only determained that i would have crucial pain during ovulation, reason unknown. I had to be put on vicatin if it ever happens. But the pill has lessed the pain. Some figured that the pain that was so great i had to be taken to emergency and my mom said it was like i was in labor, they figured it was my eggs bursting when traveling down, causeing pain. We never found out exactly what it was. But since going through all that trauma i grew scared that i would later in life, not be able to have children from some sort of failure of the overies, or defective eggs...maybe even ovarian cancer. I never found any information or others who new exactly what i was talking about or going through. i can only hope it never comes to that.