Just Diagnosed with Pcos--how Do Other Women Cope?

Hi S.,
Sorry this is so long...
First of all, don’t panic – stress is regulated by hormones and that’s really what you are dealing with here. You have one child already; let that give you hope - you aren’t infertile since it’s very unlikely your PCO is new. This is manageable and really the very best “treatments” are to improve your general health – thru diet and exercise. Medications are available and can help too; they are just not cut and dry “cures”.
My knowledge of PCO is this:
This site has been a good resource for me over the years: http://www.pcosupport.org/
I’ve heard that PCO is synonymous with "Metabolic Syndrome" and "Syndrome X". That's because it's really a hormonal imbalance and it manifests in every person differently. IE: some people have infertility; some have insulin resistance; some have thyroid problems; some women like you have a longer cycle, but others never stop bleeding. If not kept in check PCO can lead to severe obesity; diabetes or heart disease to name a few. It’s not something to take lightly but also not hopeless.
Minor changes in lifestyle can make a huge difference. If you want to get rid of it all, I do believe it’s possible, but also possible to also just manage your symptoms as they come, which is about what I’ve done.
As for “cause” – mostly I have heard that people have a genetic disposition to it, but I have also heard that soy, MSG and other additives are potential culprits as well. It makes sense that what we think of as modern conveniences and environmental toxins take their toll on our human bodies.
My experience:
I was diagnosed with PCO in 2000 by being tested for Insulin Resistance. I have the extra hair; the skin discoloration; a long cycle (I went up to 3 months without a cycle); weight issues and my Blood Pressure was slightly elevated. I was given Metformin to treat the IR; something for the BP (which helped with the unwanted hair) and birth control.
I was told that the only “Cure” was to loose weight or to have a baby, but that this syndrome causes the weight issues and infertility, and good luck with that. Although I’ve been told since then by other Drs that isn’t the case. I do believe that PCO is not very well understood and every Dr has a different opinion - you have to find what works for you; that includes your choice of Dr.
I couldn’t handle the Metformin after I had my gallbladder removed in 2002 for unrelated issues, so I went off all meds then and just did my best to keep my weight from getting out of control. It wasn’t until 2006 that I tried to have a baby. After being off birth control for 5 months I made an appointment with an OBGYN with a Fellowship in Endocrinology (per the website above) and he told me that there was no hope of conceiving without his help. And then he told me to have two or three blood tests performed on certain days of my next cycle and to come see him again when they were complete. But I didn’t have another cycle for 9 more months (I found out two weeks after my meeting with him that I was already pregnant). That means it only took 6 months to conceive which is well within normal time range for any healthy adult woman. Then we conceived our second child within two months. Needless to say I never went back to that doctor.
I did have issues producing enough milk with my first and was told the issue was typical for people with PCO. (The second isn’t yet born, so I can’t tell you yet how that went.)
However, my MD performed a blood test on me after my daughter was born to gauge my IR – the result was so good that he was willing to write a letter to a potential insurance provider on my behalf to state that I no longer have PCOS.
For me, I feel that lack of regular exercise and bad diet my entire life has been my downfall and I firmly believe that is how to control and solve all issues.
All that said, please do plenty of research on your own, ask your dr lots of questions and try to get them to check you out thoroughly so you know exactly what is out of balance in your body then consider what lifestyle changes you could improve. You’ll be fine – and your whole family will likely be healthier for it all.
Best wishes

Hi S., you may want to do some research on metformin treatment for PCOS. Suggest it to your physician and see what the response it. From what I understand, the metformin somehow regulates the PCOS issue and assists in pregnancy and relief (YMMV) of PCOS symptoms. Good Luck!

HI S.,
There is a lot you can do for PCOS, and I highly recommend seeing an acupuncturist who focuses on fertility. What area are you in? I can refer you to someone. Diet is extremely important, as this is an insulin issue which causes you to have too much testosterone, andorgens...So a diet that can control the insulin issues is extremely important.

Your doc is going to see if you are ovulating with the progesterone test at CD25. The only pharmaceutical that can help is Metformin (which is a diabetic drug), this can help some women and not others. It's very hard on the digestion and some women get bad stomach pains, distention, bloating, nausea, vomiting.

You can do a lot with diet, lifestyle, herbs and supplements that can really help. Let me know if you want a referral.

Hi S.,

I do not have PCOS but I am diabetic and take Metformin. When I was reading all about this medication since I was just diagnosed in Jan. I found out that Metformin is prescribed for 2 things Diabetes and PCOS. I really didn't get into how Metformin works for PCOS except that it makes your periods more regular.

The only thing to worry about is that birth control pills don't necesarily protect you from getting pregnant. The literature says you must use 2 forms of birth control if you don't want to get pregnant. Look up Metformin and PCOS on WEBMD.COM that's where I go for all my medical information needs.

I hope this helps you and I hope you have the desired affect. I'm sorry I couldn't help you with your questions about PCOS.

W. H in Sac,Ca

S.,
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I want to echo what Gail said. I have talked to people diagnosed with PCO one year, and no sign of it a year later after switching to WAPF diet - hormone free, soy free, healthy fats etc.
<end edit>

while none of the tests I had done came back positive, I have all the symptoms of PCO (down to elvis-face). I'm not 100% sure what info you're looking for, but here's my "drug" history.

I was on spiranolactone (sp?) to supplement electrolysis for over 2 years, and while the drugs helped a bit, the results are not worth the price I've paid. My friend (diagnosed pco) is having great results with laser, though.

I had one miscarriage and one successfull pregnancy; I was on metformin through first trimester (and lost some weight, which was nice!) and also took progesterone vaginally (guh. I forgot the med name). My little girl is also 21 mo :)

I was taking ocella after nursing was over, and wasn't thrilled with the side effects. My ob prescribed Loestrin, but that REALLY didn't work enough for me. My GP - just back from a pco-related conference - suggested going back to mini-pills (Nor-qd, a non-hormonal bcp) and metformin, but she made it clear that only a serious dose of metformin would do any good. The metformin is mostly for my weight - I'm a proportionate 200+-5, but was 180 right after pregnancy and would like to get back to that, and the drugs should help a bit.

We're still trying to figure out when to start on #2, but I'm guessing I'll stay on metformin when I go off bcp. It is generally used to help us pco victims conceive. As far as I know, there is no problem with pco and pregnancy once you've concieved, and this is not something that can be cured - nobody really understands it well enough - so I wouldn't allow this to change your plans re second child, whatever they may be.

The only thing I've heard you need to watch for is unusual weight gain - possible indication of a rapidly growing cyst. My cousin couldn't get an ultrasound because her doc thought she was just a crazy weight-control freak. A year later she lost an ovary. Had a healthy boy shortly after, so even that's not the end of the world.

I guess what I'm trying to say is, this does not change your life like diabetes or cancer would. Cope with the symptoms and enjoy having more time between periods :)

Hope this helps, and please feel free to ask me if there's anything else I forgot.

L.

Hi S.,

I don't know about PCOS, but I have looked into hormones. You can try to get more Iodine in your system. Iodine can help ALOT with fetility because it supports your thyroid, with depletion of iodine stores, your thyroid can't function right, and your hormone levels will get messed up.
I think you can put bentadine 10% iodine solution on your skin and it will soak in- you can get it that way. Or you can take Idoral, 25 mg day, plus 1000 mg day L-tyrosine to make thyroid hormones.

Soy is another big one, it is in our processed foods in HIGH amounts and it is equivalent to taking birth control pills. Almost every processed food you will notice soy in the ingredients! soy protien, soy acetate,soy casienate, soy lethicin, soy extract, ect...

The Thyroid also requires more vitamin A than other organs.
And both Iodine and Vit A are depleted by chlorine in your tap water. A good filter might be worth looking into.

Hi S., I have PCOS, an 8 and 13yr old. I was able to conceive with fertility treatments. I have not had much luck with my ob doing anything about the pcos except regarding fertility. I was on the pill to regulate my hormones when not trying to conceive. I now have an IUD because I have fibroids now. (NOT related to PCOS) You just deal with each of the symptoms. Try the dermatologist for the unwanted hair and acne. The treatments for fertilty are worth the en result. I am unfamiliar with the test, atleast the name of it. When you are given test results, the normal ranges should be given as well as an explanation of your results. Good Luck! You will be fine, I was diagnosed 11 yrs ago. Life is good.

Hi S.,
I am a 30 year old mom of triplets. I was diagnosed with PCOS when I was 26 after trying to conceive for a year. I was put on metformin to help regulate my period. That was my only symptom of PCOS. I, luckily, did not have excessive hair growth, acne, or weight gain, but have been told metformin can help with that as well. The blood test you are going to be doing is to determine your level of androgens and it's relationship to your progesterone levels. Women with PCOS have elevated androgen levels.

Here is some informaion taken from WebMD:"Androgens are sometimes called "male hormones." Men have very high levels of androgens, which are responsible for male body changes like hair growth and muscle mass. In women, androgens are necessary to make estrogen. Women with PCOS have androgen levels in the "high normal" range (for women). The additional androgen in these women can cause excessive hair growth and acne.

Excess androgen production also leads to irregular or absent ovulation, which the women experience as irregular or absent menstrual periods. Because of the problems with ovulation, women with PCOS may have difficulty becoming pregnant."

For me the metformin did somewhat regulate my periods, but did not solve my problem. I had to use fertility drugs in order to get pregnant, and now I am a SAHM to beautiful healthy 7 month old triplets. The wait was well worth it, but the infertility process was extremely emotionally trying. If you'd like to talk more about this, you can click on my name to email me. Good luck.