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  #31  
Unread 10-23-2003, 07:42 AM
Pcos

Staci, What I found out visitng a PCOS support site was that most PCOS women can take up to almost twice the dose as is listed for diabetics...remember, we are insulin RESISTANT. So I guess it takes more glucophage too. Most diabetics take about 1000 mg a day...maybe up to 1500 in rare cases...but they are also sually taking it along with a diabetes/sugar lowering type pill. I think a lot of doctors who are not experts in this just see the recommended dosages that are listed for the diabetics and won't go higher, so nothing happens for those women someitmes. On my support boards there were women who were on 1500-2500 mg a day total. They really had to have their kidney enzymes watched too. I know that a lot of women were starte on about 500 a day and increased gradually, until they saw some results of regular periods and reversal of other symptoms. For some, it then took up to 3-4 months to see the results. I was lucky and it was within about 6 weeks that everything started working quite regularly again at 1500 mg/day. The dieting started working even sooner than that. We are all so different. One bad side affect of glucophage is it can really give you the runs...bad at first. Imodium was my "friend" for sure. Some ladies also get changed over to Avandia...hmmm, there is one other one now too I think. I think they have less side affects for some or just work better for some. That is one of the reasons iit is best to go with an endocrinologist, fertility specialist or reproductive endocrinologist.

Glucophage is also a pill you have to stop taking preop and then restart once you are taking a regular diet again with good fluid intake. Even when you have the flu you need to stop it until you know you are dehydrated again. If you get dehydrated and take it you can have some kidney damage (hence the kidney enzymes checked). It used to be that they wouldn't restart glucophage until those levels were checked and ok but they have eased up a bit on that and just make sure you are taking adequate fluids in again. I waited about 3 days post op to take mine again.

I should probably go visit the PCOS boards again, but there is a lot of trying to conceive ladies there and I feel out of place, especially now, though I remember post hyst ladies there several years ago even..... but who knows what new things are going on out there. I should check it just for that.

Linda >^..^<
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  #32  
Unread 10-23-2003, 10:50 PM
Post-Op Treatment

Thanks for the glucophage info!

That brings up another question: Will the PCOS hormone junk still exist after the H? As far as taking glucophage, spironolactone? The Pill? Is the Pill ever used for post-op HRT?

I guess since we're all different you can't give a "correct" answer for me, but I wonder what will be involved with an endocrinologist after H? Because the insulin problem will still be there right? This is sure confusing.

It seems that the H takes away so many problems for women with endo, fibroids, etc. My friends who had those symptoms all say that their lives began after having the H, and it was the best thing they ever did. I am suspicious! I don't think that will be my case. I'd love it to be, but PCOS originates elsewhere, so I'll just be getting rid of the victims of the disease not the cause, right?

I'm sure full of the ????s tonight!

Also: what do all the surgery acronyms stand for? Found the DD, DH, etc. explanation on this site. Where are the medical ones? I've figured out TransVaginalHyst, but get confused. Thanks for your time! Staci
  #33  
Unread 10-24-2003, 02:24 AM
Pcos

Here is a copy of a previous post where I replied to someone asking some of the same questions. It may have more than what you need but you can pick out what you need for yourself.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Having a hyst does not reverse or cure your PCOS. It is called Polycystic Ovarian syndrome because that is the main thing that is affected by this syndrome that we notice the most. The main symptoms are overweight (thought there are thin PCOS women) with an inability to successfully diet and keep it off, acne, excessive hair where you don't want hair growing (face, toes), thin scalp hair, infrequent or no periods and on ultrasound the ovaries look like they have a ring of pearls around them or like choc chip cookies (the multiple small cysts). Untreated PCOS can lead to heart disease, high blood pressure, stroke, diabetes (we run out of the insulin after using such high amounts) and this one is what got me, endometrial cancer (that is what I had besides the fibroids).

This is not caused by anything going on in our ovaries but the cause makes our ovaries polycystic. It all starts way back in our pituitary gland that regulates most of our hormone functions (not just reproductive). PCOS is caused by insulin resistance. Insulin is a pancreatic hormone. Insulin converts the sugar in our blood system (that has been absorbed through the stomach) to usable energy in our cells. PCOS women have abnormally high level of insulin in their blood. Blood sugar rates run normal. Liken it to this. It takes the PCOS woman twice as much insulin to convert the same amount of sugar as it does a normal person. This imbalance is what causes our hormones that affect the ovaries and ovulation to go out of wack. So even if you have your ovaries removed, you still have the insulin resistance that caused the ovary problems. You still need to keep taking the medication that helps control it. All of those potential complications are still there .

It wasn't until over 7-8 years ago that the scientists knew the direct cause of PCOS and then had a treatment a few years after that. PCOS women can now be treated with a drug used for diabetes...but remember, they don't have diabetes. It just happens that about the time they found the cause a new drug for diabetes was developed that made you use your insulin more effeciently. For diabetics, they can many times reduce the amount of insulin injections they take with this or even go back to taking pills only. For the PCOS woman it makes us use our insulin effeciently enough that we know only use the same amount to convert the sugar that the normal person does. A couple years ago it still wasn't listed as being used for PCOS.

I went from having a fasting insulin level about 2-3 times the normla rate to back to normal when I started taking this med. Glucophage (Metformin) is one of these and Avandia and some other new ones work also. Most POCS women when put on these meds have a slight reduction in their facial hair, thickening of their scalp hair, acne is lessened and by going on a low carb diet (this is the diet of choice for PCOS women) can now finally loose weight successfully. Periods start back up regulary and many women who couldn't get pregnant before are now having success...so they are ovulating again or with fertility treatments ae having more success.

I started having regular periods within 2 months of going on the pills. It can take a bit of tweeking to find the right dose for each woman. It is usally quite a bit more than for diabetics. Unfortunately a lot of gyns still don't get what PCOS is all about and some are just now starting to prescribe these drugs. For some time it has been mostly the fertility and endocrine doctors that have understood this fully. Gyns typically would tell a PCOS woman that if she lost weight the problem would go away. Noooo....you can't loose the weight because you do have the PCOS. They are getting better but I had to keep reminding both my gyn and gyn-onc that I still needed the meds because it was an insulin problem.

If you have a doctor who doesn't know much about this from the endocrine side of things, find yourself a reproductive endocrinologist (fertility doctor - they treat this without having to do fertility treatments) or a regular endocrinologist. Get on the medication so you can prevent the complications of not having it treated. A lot of the gyn's are starting to use it more and more but mostly when someone comes in for fertility problems. I also had a gp who read the info I printed off the internet (medical reasearch artlices) who was very willing to work with me on it too. There are some good links here for PCOS web sites:

https://www.hystersisters.com/vb2/sh...&threadid=76075

My endometrial cancer very likely was there because I went so many years without having periods before I was finally started on provera, which I only probably took 3-4 years before I was started on glucophage and the periods came back. I used to complain about ugh, this is supposed to be a good thing, my periods starting up? But if it hadn't then I may have never known. When things started getting so heavy and painful, and I thought it was fibroids I went to the gyn. So it was good to have those periods back. I also had an endometrial biopsy about 3-4 years ago that was normal and I went in then because those regular periods started getting irregular and just a bit more painful.

I have gone through what a lot of you have. I was told I had polycystic ovaries and that would make it hard to conceive. I went through fertility treatments and quit when I couldn't take the pain from the hyperstimulated (from the hormone shots) ovaries that got as big as melons. Just couldn't face it anymore, and get that way, and then have a period. We had chosen fertility treatments over adoption with the money we had available because I am adopted myself and this was important to me, to have my own flesh and blood. We settled on being childless. We have great neices and nephews and the 3 cats are our "furkids". ABout 4-5 years after I stopped treatments I overheard the secretaries at church talking about Stein Leventhal Syndrome (the old name for PCOS or someone with polycystic ovaries). I asked them what they were talking about and they showed me a magazine article about PCOS and the lady in the picture looked just like me. That was the start of my journey to getting treatment and knowlegde about PCOS. I found web sites and support boards that were full of ladies like me. I know now that God lead me all the way through this. To finding out about the magazine article and the treatment to having my periods again and something to warn me when things weren't right inside so I had the surgery in time and finding this site. His timing has been perfect all along.

Please, don't accept that you have PCOS and not do anything about it. There is a very simple treatment for it.


__________________
  #34  
Unread 06-26-2004, 06:15 PM
Pcos

Found this one thanks to a lnk!

Okay, I was diagnosed with PCOS in Oct of 2001, and during the first 18 months I was taking Metformin and not only did it give me regular cycles for the first time in my life, it reduced my migraines from 1-2X/month to 1-2X/year, I had fewer cysts (instead of every sinlge month, it was every 3-4 months), the joint pain faded and best of all, by combining the Metformin with The Insulin Resistance Diet I was able to lose more than 100lbs! However, when I found myself unemployed for most of 2003, and without insurance, I was not able to get the medication. I got stricter with my diet, but before long I hit crisis level again. Fortunately, this happened right about the time my insurance at my new job kicked in. So, I was trying to lose that 40lbs I gained in 7 weeks before getting back on my meds when I noticed a cyst that would not go away, and I also have noticed that my weight seemed to not be going anywhere, and I went in to the doctor. I consider myself very lucky to have the PCP that I do, since she is amazing and listens when I talk to her. She sent switched my meds (the Metformin ER was just not helping me, so now I'm taking straight Metformin again) and sent me down to get an ultra-sound ASAP. I won't know for sure what I've got until the slip me open, but they found a large mass near or around my left ovary. The view is obscured by something, so they won't know for sure what my surgery will involve until I'm on the table.

Thank you for all of this information, it was terribly vital and amazingly informative. I too have stopped frequenting the PCOS boards because of all the hopeful mommies. I was told when I was very young that it would be near impossible for me to conceive, so it's never been an issue for me. It's nice to have another perpsective on all this.
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