8 answers

PCOS Help?

Hi everyone, I'm a newbie-this is my first post....sorry it's such a doozy ;)

I wanted to ask if there were any moms out there dealing with this syndrome, and what, if any, treatments have been successful/unsuccessful. I was diagnosed about 18 months ago, and I haven't had ANY luck. The only thing my doctor is willing to do for me is put me on birth control pills, which I tried-but I only ended up gaining more weight and not having any other symptoms alleviated.

I'm at the end of my rope already, and this isn't going anywhere, so it's time to do something different.

As of my last ultrasound, I have a particularly large cyst that is functioning(and several smaller ones), so it is wreaking havoc on my hormones. My cycles are horrendous, I'm in constant pain, and I'm terrified about the risk of torsion (sp?). I'm breaking out like a teenager, the hair on my head is falling out, or perhaps it is just migrating to my face lol. I have been able to maintain my weight at 165 now that I'm off the pill, which isn't bad for someone with insulin resistance, but at 5 ft 3 I'm still atleast 30 pounds overweight.

Enter the double edged PCOS sword. Any extra weight makes the symptoms worse, yet the syndrome itself makes it nearly impossible to lose weight, and all too easy to gain.

Can anyone offer any advice? Sadly, I know very little about PCOS, only what I've read online. The worst part of it all is that I think I am more knowledgeable about it than my doctor is, and because he has little or no experience treating it, he doesn't want to "go there unless and until he has to". I really don't want to wait until I'm bald, covered in acne and facial hair, and 200 pounds overweight before something changes.

What can I do next?

So What Happened?™

I wanted to thank everyone for the responses-I had no idea I'd get so many!

I live in Morenci, tiny little town so not much choice in the doctor arena, but I will be looking into the physicians that you all have recommended. My mother lives in Apache Junction, so I can justify the drives to the Phoenix area to visit her and kill two birds lol.

I have not taken metformin or glucophage, but have run across alot of mention of these two drugs in my research. My doctor won't prescribe either one because he didn't consider my weight problem severe enough. I've actually been tempted to let myself gain weight just to get him to take some action, but I realize now what a ridiculous idea that is.

WHen I asked him to, my doc did give me a referral once to an ob/gyn in the next town (still small), Dr. Tran in Safford AZ. That was only discouraging, as he is primarily a "baby" doctor and seemed annoyed that I was even taking up his office time before I even opened my mouth. He then proceeded to tell me that he didn't think that I had PCOS, because it was impossible if I was still having a period. He said that women with PCOS are infertile and have no cycles. I stopped going to the doctor about it altogether after that, because I'd already spent about $500 in copays for the tests MY doc ran to diagnose me in the first place.

My insurance doesn't require me to have a referral though, so I'm thankful for all of the references. I can't ignore this anymore.

Boy is it depressing to hear that no one really has much luck with the weight issues without going low carb. I know that it works-the Atkins diet is how I lost the weight I gained from the pill-but I HATED every minute of it. I'm fine about not having fried foods or lots of sugar, but the idea of giving up rice, potatos, and bread altogether for the rest of my life is a daunting one to say the least. *sighs*

More Answers

Have you ever considered alternative medicine? There is a lot of information out there on taking the alternative route instead of medication. I really like curezone.com, They have a lot of good information and suggestions. You can also find a naturopathic doctor who usually can recommend alternative nutrition.

2 moms found this helpful

Hi L.,
Sorry you are going through such a rough time. I don't even know what PCOS is, but it sounds like you are not getting the help you need from your physician. I have recently been seeing a naturopathic physician. She is very caring, and works with supplements, herbs, and homeopathy, as well as prescription meds. I suggest you look up some naturopaths in your area(I'm in AZ), and consider trying that.
Some of your symptoms sound thyroid related. Have you had that checked?

Good luck!

S. H.

2 moms found this helpful

You're not alone L.! I'll be 29 in August and was diagnosed with PCOS in 2001 by my OB GYN who just mentioned it in passing, gave me a little information pamphlet and prescribed birth control pills-not very helpful! She told me I would never be able to conceive until I lost weight. Doesn’t she know that losing weight when you have PCOS is practically impossible?! Finally I made an appointment with an Endocrinologist at the Mayo Clinic in Scottsdale. Dr. Laurie Roust CHANGED MY LIFE! She actually listened to me and gave me answers! After a whole slew of tests, blood work and even an ultrasound to see the cysts I was put on a different medication-Glucophage to treat my insulin resistance (this is very common for women with PCOS-that’s why we can’t lose weight!), the Yasmin birth control pill (a safer more natural hormone), I saw their dietitian and eventually had my larger cysts removed laproscopically by the Mayo surgical gynecologist Dr. Roseanne Kho (voted the BEST Surgical Gynecologist by Phoenix Magazine in 2004). I did see another surgical gynecologist for a second opinion before surgery but she didn’t have the capability to perform the surgery lapproscopically and the healing time would have been a hospital stay and 2 weeks healing instead of an out patient procedure with immediate results! Once the larger cysts were removed, I had immediate pain relief. By cutting out ALL WHITE and PROCESSED foods and switching to hormone free milk and meats (Whole Foods baby!), and increasing my exercise from never to every day, I was able to finally lose weight. I made a deal with myself that I could not watch TV unless I was on my treadmill-eventually I narrowed it down to my Oprah hour on the treadmill. I’ve lost a ton of weight and am now completely PCOS symptom FREE! As far as the infertility problems I and most every other PCOS patient has, once I got healthy my husband and I had no problems conceiving and I gave birth to TWINS last summer! Both of my babies are perfect in every way and I’ve even been able to lose my pregnancy weight!

I know there are online PCOS support groups. I didn’t join any but did visit a few by doing a Yahoo search. Please email me if you have any questions! I hope this helps you and anyone else with this nasty problem!
Good luck!

Sincerely,
H. in Gilbert, AZ

For more information, check out these sites:

Glucophage and PCOS…why you may be insulin resistant!
http://www.pcos.insulitelabs.com/Metformin-and-PCOS.php

What is Glucophage and do I need to take it to treat my PCOS?
http://www.ovarian-cysts-pcos.com/glucophage-metformin-pc...

Mayo clinic PCOS treatment information:
http://www.mayoclinic.org/pcos/

Dr. Lori R. Roust, M.D. my Mayo Endocrinologist
http://www.mayoclinic.org/bio/10279628.html

Dr. Rosanne M.C. Kho, M.D. my Mayo Surgical Gynecologist:
http://www.mayoclinic.org/bio/11467126.html

2 moms found this helpful

L.,

You sound like a riot...and I'm sorry about all your trouble. I don't know if I can help or not. I have been involved with a company callled Synergy Worldwide. They are a health and wellness company and the products we have are amazing. Frankly, I got involved as a business concept, not for the products. But they are doing so many amazing things for so many people, I have changed my view! I can understand your frustration in "knowing more than your doctor" -- my mom is a nurse of 50 years having moved here from the Chicago area and she said the medical care in this state is atrocious!! We have one product in particular that has helped people with lowering cholesterol, lowing blood pressure, and getting people off insulin. Basically, we take a whole body approach to health...treating the body vs. treating symptoms. But the doctors on our medical advisory board are nationally renowned and really know what they're doing with respect to these products. There's too much to go into any further depth here, but if you would like to call me and/or get together, I'd be happy to share what we have. Again, I don't know if it will help...but you never know. My name is M. and my cell is ###-###-####. Good luck!!

2 moms found this helpful

If I were you I would seek a second opinion from a naturopathic physician. I know an excellent doctor in women's medicine. Her name is Dr.Farra Swan. She is located in Mesa, Arizona, not far from Banner Dessert Hospital on Dobson Rd. and the US 60. I am not sure how far away you live from Mesa, so maybe another naturopathic physician would be more realistic, but they have so many wonderful ways to get to the root of what is causing everything versus just covering up the symptoms, like in your case by trying to give you a birth control pill, which would even add additional side effects to the mix.

Best of luck!!!
C.

1 mom found this helpful

Hi L.,

I don't have personal experience with PCOS, but it sounds miserable. I'm responding because I have been seeing the midwives at the Tucson Birth & Women's Health Center (near TMC) for years - both for my pregnancies and for all my other GYN care. They are so knowledgeable, especially about natural and alternative types of treatment. If I were having the kind of trouble you describe, I would definitely go there, because I would anticipate really good attention and thorough, well-rounded care from them. It doesn't sound like you are getting that from your current doc.

Good Luck!
-S.

1 mom found this helpful

L., My heart goes out to you. I also have PCOS and was diagnosed about 5 years ago. I also happen to be a Certified Nurse Midwife which gives me an edge in accessing information on this disorder. First, I would try to find another OB/GYN or be referred to a reproductive endocrinologist that is comfortable treating you. BCPs are only one of a few treatments and some types of the pill work better than others. I'm not a huge fan of birth control pills because they have side effects and risks as well. The most effective strategy to manage my symptoms (45-60 day cycles, mood swings, hair loss, fatigue, etc) was adapting my body to a low carb, higher protein diet combined with both aerobic exercise and weight training. When I lost just 10 lbs , I noticed a huge difference in how I felt and the length of my cycles became more predictable. Please be proactive and find a Dr. you like and that can help you with PCOS--they are out there. If you act now, you may save yourself from developing diabetes later. I'm so thankful that at 28 and then a newlywed I was able to make some serious lifestyle changes that allowed me to obtain and now maintain a normal weight for my height, stop having irratic menstrual cycles and have a healthy daughter and now a son on the way. PS: If you are tempted to try herbs, please seek the care of a naturopathic doctor and have him or her manage your PCOS. Herbs are drugs too and can both help or cause harm. Best wishes! R., 34 (Stay at home mom of 1 since 2005)

1 mom found this helpful

Herbs are available to assist in regulating our endocrine system, which include our hormones. That is the path I would seek, finding a good herbalist who has the knowledge and experience to help.

1 mom found this helpful

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