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RE: PCOS? - 8/5/2007 5:11:01 PM

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Well, if I had health insurance I would pursue those options as of right now I can't....but my new job will provide me with the insurance that will hopefully help me pay for those types of things. I just wish she had told me before I got another appointmtnet that she had done tested me for it.

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RE: PCOS? - 8/5/2007 5:29:55 PM

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I know there is a link between PCOS and being overweight, that has been clincally proven.
I agree I am not sure which comes first the chicken or the egg.
My girlfriend has it and it has not gone away even after she lost a great deal of weight.

(in reply to sleazybutterfly)

RE: PCOS? - 8/5/2007 5:41:22 PM

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I was diagnosed with this about 5 years ago after I gained a tremendous amount of weight. I went through about 1 to 2 years of tests before they finally decided to label me as having PCOS. When I was younger I rarely had a period and because of that was told I'd probably never have children. At age 25 I was diagnosed with high blood pressure. I left my old Gyn for a woman who was astounded that my old Gyn wasnt treating me for missing my periods. (he didnt seem to concerned) But she explained how unhealthy it was not to have a period for a year. So she started me on pills to force my periods to come. I am very lucky that I have 1 child. Now at age 44 I have the weight which is an absolute struggle to keep off, I have diabetes and the woes that go with that.

It is no fun and yes it is hard to diagnose.

Good luck,
~Lashra

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RE: PCOS? - 8/5/2007 7:09:21 PM

Wildnfreehrt2004

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PCOS relates to having a higher level of testosterone, which in turn, creates a higher level of insulin, which is involved in creating higher levels of testosterone and the neverending cycle. Higher levels of insulin and insulin resistance are related to being overweight because insulin resistance means the cells won't release the stored energy if they detect insulin in the blood because insulin decreases blood glucose by shifting that glucose to the cells (storage) and out of the blood stream. If insulin is present, it means keep energy stored (fat) and not release the stored energy. It takes a lot of insulin to bring a blood glucose level to normal, but it only takes a whiff of insulin for the cells to decide not to release energy stored (fat).

Metformin is the first medication to try on PCOS, it helps to lower the insulin resistance, which decreases the circulating insulin, which decreases the level of testosterone, which at some point, can help normal hormonal cycles resume. As with anything, there are different levels and degress of severity, which require different levels of treatment.

Signs of PCOS include increased hair on face, chin, abdomen (belly button and below), back etc. Some people also have a darkening of the skin on their back just below the neck, and in their armpits.

Wildy

< Message edited by Wildnfreehrt2004 -- 8/5/2007 7:10:06 PM >

(in reply to Lashra)

RE: PCOS? - 8/7/2007 1:34:57 AM

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Lashra Hi its AngelMistress from second life....hehe....Thanks for all the advice she said since mylevels were normal that I didn't have it, but I have missed periods, I am overweight, my weight is coming off with the Metfomin, I have the dark skin on my neck, armpits, just everywhere you can have it, like hands elbows.....*sighs* Anyway she says that one the weight comes off I will have regular periods as the fat holds the estrogen keeping it from getting to my ovaries and making me have regular periods, she also says that it could be from stress.....that I don't get....but anyway.....I am no doctor so I can't question it......I may get another Doctor when I start my new job.

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RE: PCOS? - 8/8/2007 5:16:35 PM

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Fast Reply:

I'm 25 years old and have had PCOS for 10 years. The treatment that I've opted for is BC only, due to the fact that we don't desire children. Over the years, I've heard and read about the success of diabetic medication in helping PCOS women to regulate their menstration and ovulation, easing conception. I wish you much luck with this. For me personally, I do not have periods unless I'm on BC, so the cysts were getting way out of control. I've been on BC almost continually for the last 10 years. For those of you women who haven't been having periods for months, or years, please see your doctor. My GYN recommends that a women should have at least 4 menstrations a year. It can be regulated with BC, or other hormone therapy, for those who desire pregnancy. (Ask your doctor...I think it's progesterone only pills to make you have regular periods, without the BC aspect.)

Just my experience,
MrsShadows

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RE: PCOS? - 8/11/2007 3:00:48 AM

sleazybutterfly

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Officially diagnosed yesterday, atleast I know where I am with things now. I have a ton of lab work coming up next week, then a possible biopsy afterward. I am grateful I found a wonderful Dr who covered all of the bases and a bit of the outfield.

I am not positive I wouldn't seek a second opinion on what you think you have if symptoms don't improve at all. Don't put it off until you are my age and have more stuff for them to worry about.

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RE: PCOS? - 8/14/2007 7:26:02 PM

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Well, if I had to ability to pay another doc for a second opinion I would but as of right now I don't have that option. She did the blood tests and they came back good, so I don't know much about PCOS, but from what I have read the hormone levels are supposed to be elevated in one way or another...if I am wrong let me know. I do know that I have some of the symptoms such as the thick hair and all that, but I guess that could be genetics. And the only other thing I have besides infertility is the insulin resistance. I don't know what the guidelines are but evidently I didn't fit in them.

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RE: PCOS? - 8/17/2007 9:41:03 PM

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Hi all.

I'm new to these forums, but when I saw this topic, I felt like I had to pitch in. I also have PCOS, diagnosed over 10 years ago, though not until after many years of cluelessness by gynecologists.

The following websites might also be of some help to people:

http://www.pcosupport.org/
http://www.ivf.com/links/pcoslinks.html

I'm sensing a lot of confusion coming from people about what constitutes PCOS - the answer is that it's different for everyone. PCOS is usually diagnosed when a person has any number of a constellation of symptoms, which can include: insulin resistance; excess bodyfat, especially around the midsection; raised testosterone levels; excess body hair; hair loss; irregular or non-existent periods; ovarian cysts; acne. There are others, all equally as fun, some of which have already been mentioned in this thread.

Testing also varies - blood work, glucose tolerance testing, and ultrasound may all be used. Blood work may yield results within the "normal" range, but a good doctor should be able to recognize this, especially if he/she is paying attention to other symptoms which may be present.

Treatments also vary, depending on many factors, including if pregnancy is sought. Some people are put on insulin sensitizing drugs like Metformin/Glucophage, but these are not without risks, such as liver damage. If you're on one of these, your doctor should have tested your baseline liver function, and be monitoring it throughout treatment. Others are put on androgen (male hormone) blockers, like Spironolactone. Birth Control Pills only mask the symptoms, and do not treat any of the underlying causes. An exception is Yasmin, which has a different form of progesterone, which also acts an androgen blocker. Another option, believe it or not, is heavy excercise - aim for 2500 calories a week.

For women who have this, or suspect they have this, please try to see an endocrinologist, not just a gynocologist, even if you're not seeking fertility treatment. The websites above, and the soulcysters site, all have excellent resources & information on diagnosis, treatment, lifestyle, and so on.

Good luck, everyone. Sorry for the massive post...

(in reply to zindyslave)

RE: PCOS? - 8/19/2007 8:01:54 PM

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I have PCOS. It is manageable, if you stay on top of it. First off, ask for EVERY test they can think of, and then, take 'em!!! Ultrasounds of your uterus and ovaries are uncomfortable, but not the end of the world. Blood tests to look at your hormones, blood sugar, etc, can be invasive...but just like anything else in the world..the more you KNOW the Better!

Insulin resistance, cysts on the ovaries (often look like pearl strings), too much male hormones, ...the female fat cell will put out a clone of a female hormone and your body will stop producing it... unexplained weight gain, loss of menstrual cycles or over active cycles, let's not mention the crazy emotional effects...PCOS also is one of the top reasons why women have trouble conceiving. Don't be surprised if your OBGYN passes you off to an Endrocinologist, and the Endo tries to pass you off to your General Practictioner. Be your own advocate and keep looking things up. Google the term and you can find a wealth of information!

Glucophage/metformin is a wonderful tool. The doctors may also give you oral birth control pills to help stabilize your period.

I have had two children, in spite of my PCOS, but because of the insulin resistancy (and family history) I had gestational diabetes. Both times the gestational diabetes went away, but at 30 I was diagnosed diabetic.

Trust me, take care of it now!

(in reply to zindyslave)

RE: PCOS? - 8/19/2007 8:43:04 PM

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Hi everyone,

I couldn't help, but jump into this topic. Please forgive me for the length of this post as I am a bit excited at finding others with the same problem that I have.

I am 45 and was diagnosed by a past Gyn in 1992 as having PCOS due to all of the symptoms I have had since my teens and, worse, since my 20's. I don't look like someone who has PCOS. I was not given any bloodwork to formally check it, however. My blood sugar was checked during my 20's, but it was normal.
In 1993 I was put on birth control pills because I was to the point where I was bleeding all the time and to control my periods after that (I don't ovulate) as well as briefly on Spironolactone. I am still on the birth contol pills today, but at a lower dosage and with a different Gyn. I have had cysts, but they went away on their own.
My present Gyn is planning to keep me on the pill for now as long as I keep my weight down, likely until I hit menopause - which may be in nine years from now.

This past year I have joined a PCOS online support group and found out a lot of information I never knew before regarding treatments (especially Metaformin/Glucophage). With some difficulty, I have managed to lose ten pounds within the past nine months.

I cannot go to an Endocrinologist because there are none near me who is with my HMO. Plus, I am going through Peri-menopause now. I am wondering if I should even bother with the Metaformin/Glucophage at this time. Should I ask my Gyn about it? I feel as though it is too late for me - 45 years old and going through Peri-menopause, so children are out of the picture now.

(in reply to kikinymph)

RE: PCOS? - 8/20/2007 1:03:30 AM

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I was first diagnosed with PCOS when I was 16. The first and most important thing to remember is that you're not alone and this disease DOES NOT CONTROL YOU!! I battled with it, through denial for several years. I've had doctors tell me I have it and others tell me I don't. The thing is, PCOS manifests its self in every woman differently. You can be skinny or overweight and still have it. A close family friend has it and she's a size 4 so its not all about being a bigger girl. Most women who have PCOS experience male pattern weight gain, myself included. You tend to gain your weight around the trunk, rather than hips, thighs and butt. This is just one of the many symptoms that manifest as a result of higher testosterone levels. I personally battle with this, dark body and facial hair that I remove by shaving.

Some who have this disease have insulin resistance or don't but the met works for them. Unfortunately, I'm not one of those women. I am in the rare group who already has lower blood sugar levels. Because of this, I cannot follow a strict low carb diet but I do follow one that is high on protiens. I've reduced my carb intake as much as I safely can. I also excersize regularly as excersize not only helps you to loose and keep off weight but it releases several healthy endorphines and chemicals into your blood stream that can help regulate your moods, periods and other processes in the body. I personally take BCP's, spiro and a women's daily multi vit. I used to take YAZ, a 24/4 version of Yasmin but due to a change in the insurance offered by my work, this was no longer covered. I have since found that Orthotricyclin works well for me as multiple studies show it has the lowest effect on androgen levels in the body. I get blood work done regularly to test my testosterone levels and the levels of potasium in my blood stream as spiro can cause the potasium to become elevated. Before starting spiro, my testosterone levels were 8 times the levels they should be in a woman. As I've lost weight, started the BCP's and the spiro, they've dropped to about 4 times the normal levels... something I feel is a huge success.

I share this because i want you to know that while the battle will tend to be long and your doctors will have to sometimes find fancy ways of getting treatment covered by insurance, if you find the right doctor you will know it. I also want you to know you're not alone. I belong to a couple of onlne forums, soulcysters.net and projectpcos.net (bookmarks have made my memory lacking on this one but if you search for projectpcos you'll find the parent site). I have found that over the years the women on these sites have been some of the most supportive and understanding and knowledgable women out there. The wealth of knowledge you can locate is amazing and you'll find that these groups will be a life saver time and time again. Good luck and if you ever have any questions or comments, please do not hesitate to ask me oremail me. [email protected]

(in reply to Blondbisub)

RE: PCOS? - 9/11/2007 9:52:23 PM

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It is rather releaving to find that there is a topic posted about PCOS.

I was diagnosed with it about 3 years ago. In April 2006 I had the whole ovarian drilling procedure done. During the surgery my Dr discovered that my uterus was encased in scar tissue that conected to my bowels and bladder. The ends of my fallopian tubes were closed up like fist, and scar tissue had wrapped around them. Doc removed as much of the scar tissue as possible, and reopened my fallopian tubes. We are not sure of what cased the scar tissue, except possibly endomitriosis...The surgery has not helped me in the long run. I am now facing having a partial if not a full hystorectiomy (sp?). I will find out on the 24th of this month which one I will end up havining. I am currently taking Ovcon, and Lexapro (depression and mood swings). I am not able to take metformin, it causes my bloodsugar levels to drop to where it is like I am hypoglosimic.

Over the past few months the pain of having this has gotten worse and worse. I miss work, life, and family. I have days that all I do is lay in bed with a heating pad. I have also just started recently having a problem with bleeding. It is not really bad, but it is more than spotting and less that being on my period....

Anyway to get to the point. Has anyone else had these problems with PCOS?

(in reply to petsarah)

RE: PCOS? - 10/5/2007 5:47:49 PM

CassandraAlexis

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I have PCOS, we suspect my mom had PCOS, but they just hadnt figured out what PCOS was in the 1970s/80s. PCOS covers a large group of symptoms of which a person with have most, but it is rare someone has all the symptoms. Once you have had the tests, including the ultrasound to confirm the PCOS diagnosis ask your doc for a referal to a Endocrinologist. If you can you want one that specializes in PCOS, if you cant find that, someone that deals with diabetes and glucose disorders is your best substitute.

There is so much on it, and they are still learning so much that it is constantly changing and most general docs just arent on the top of the newer info. Dont be afraid to do your own research and ask. If you cant find a specialist who can take time to talk to you, you dont want them. This is important. My endo sat down with me for 2 hrs my first visit and my followups have been 45minutes to an hour each time. There is so much information and PCOS symptoms fall into so many different groups and effect your life in so many ways, that there is a lot of information to discuss.

The newest research has connected PCOS to insulin resistance and glycemic disorders, however, they arent sure which one is the cause and which is the result. A lot of PCOS women feel better on lower carb, or at least whole grain rather than processed carb type diet. Kind of a modified diabetic diet. About 70% of PCOS women are overweight in the "obese" bmi ranges. It is also very common when the time comes to want children, to need the assistance of a fertility specialist, or at least special drugs from the gyn or endo to assist.

(in reply to MistressSavage)

RE: PCOS? - 10/5/2007 11:59:40 PM

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Yes, I have it, go to www.soulcysters.com GREAT BOARD!

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RE: PCOS? - 10/31/2007 3:02:50 PM

ExpressiveSoul1

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I have been diagnosed with PCOS since 1999. I have probably displayed the symptoms since my early 20's but they really weren't aware of the syndrome back then.

I am happy to say I am expecting a child and with no fertility drugs this time around(after a preterm birth in 2000 that resulted in a stillborn baby). My success in ovulating without prescription meds has a lot to do with my managing my diet and exercise as best as I know how with lots of education along the way.

The many links and boards mentioned prior to here are very helpful and can be great resources until you have insurance that allows you to get tested and treated. I would highly recommend getting a referral to an Endocrinologist who specializes in PCOS or has lots of experience in treating women with PCOS. It is not exlusively a gynecological issue. It is a hormonal issue which many of the posters have mentioned include mental illness symptoms, weight issues, etc.

PCOS does not treat everyone the same. Being extremely aware of your body and how PCOS affects you is instrumental in assisting you assist your caregivers with treatment.

Best of luck to you. The medical community has come a long way in understanding this problem even if they don't have a cure.

(in reply to hermione83)

RE: PCOS? - 11/15/2007 2:59:38 PM

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I have PCOS and its not the end of the world. Its heretitary from your fathers side. it causes irregular periods weight gain and alot of trouble getting pregnant and insulin resistance to top it off but with metformin the dr gave you should take away alot of your symptoms but the metformin along with birthcontrol takes away almost all your symptoms and helps alot with weight loss or at least maintaining your weight if you have any questions feel free to contact me

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RE: PCOS? - 11/16/2007 7:21:08 PM

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quote:

ORIGINAL: LadyIce

I know there is a link between PCOS and being overweight, that has been clincally proven.
I agree I am not sure which comes first the chicken or the egg.
My girlfriend has it and it has not gone away even after she lost a great deal of weight.

PCOS is hereditary. Being overweight is one of the symptoms.

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The Accelerated Velocity of Terminological Inexactitude

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