polycystic ovaries

[SweetErika]

The biggest problem with Metformin is that is seems VERY hard to tolerate if you aren't eating right. When my wife first went on it she got so sick that she gave up. A few years and a new doctor later its a different story. This doctor is the one who set her up with a dietician. The trick is that in order to tolerate it, you HAVE to eat. It's totally counter intuitive, but it works. Although I'm sure there are still some women out there who just can't tolerate it.

Glad you got it under control.

Right on. I don't have to be quite as strict now that I'm so used to it (and know what I can/can't get away with), but for the first year or two I had to have it with a good meal and carry snacks all the time. I still have to have access to sugar at all times, and when I'm not eating enough due to illness or something, I just don't take it, period. Hypoglycemia and GI upset are horrible, but usually quite manageable with a good diet and plan after the adjustment phase. Until then, buy stock in Pepto Bismal.

I had almost no GI problems with Glucophage XR, but it was too expensive, and I don't think I could get the 2000mg I need to control the PCOS. It's good to try at the start, and can make for an easier time with the Metformin, though.

 

[marge_w]

aint being a woman fun!!

I have endometriosis which tends to get lumped together for treatment with PCOS - well it's all "womens problems" lol

In reply to Mary's cry to have the cyst's removed by surgery I have a cautionary tale.

The first time I had surgery for it was to remove a "chocolate" cyst on my left ovary, the surgery itself was a laporoscopy, where they make 3/4 tiny cuts on the navel and in the bikini line and go in via the keyhole, although I recovered quickly from the procedure and was back to normal within 2 weeks, the damage done in the removal of the cyst to the very delicate ovarian tissue has spread the endo throughout my abdomen, left adhesions and damaged the ovary badly enough so that the only way to reduce my pain levels has been to remove it completely.

In someone with PCOS I would say that surgical removal would probably cause more damage than would be worth the pain and danger of the procedure. Also by the very nature of the condition it would only give a very temporary fix before more cysts formed.

I am not sure if it is appropriate for PCOS, and it is only a one time treatment, but what worked best for relieveing my symptoms was 2*12 weekly injections of Zoladex (goserelin acetate) which put me in a temporary menopausal state for 6 months, the hot flushes and mood swings were hell but the reduction in pain was wonderful.

There are lots of online communities solely related to PCOS and endo which are full of discussions on treatments,information and emotional support for the sufferers and their families.

love n hugs

Marge

 

[Jo_Huntz]

Sorry for long post! Have bolded noteworthy bits.

I was diagnosed at 19. My doctor at the time was pretty much useless, she told me to come back when I wanted to have children. I'm a lesbian [mostly] so children aren't an issue, but I was overweight, exhausted and somewhat beardy. I was too overwhelmed and scared and confused, in fact I couldn't even remember what the condition was called and my partner and I had to do extra research.

In the course of researching, we found a book by Colette Harris and Dr Adam Carey - PCOS, a Woman's Guide to Dealing with Polycystic Ovary Syndrome. I read all through that, still very confused, and went back to my doctor. She was still as rude as ever but in the end referred me to a gynaecologist.

I had regular appointments with them for about two years, but once I managed to get my weight down to 13st so they released me from care. Since then, I've grown-up a lot more and I understand my body and what's happening a lot better.

There is another book again by Colette Harris - PCOS Diet Book. She maintains that your symptoms can be controlled through diet and eating good food. I've been trying it for about a month and I agree wholeheartedly!

More whole grains, more fresh fruit and veggies, less fat and simple sugars. I've also been taking more supplements and vitamins. If you are tired all the time [like I was] get yourself some vitamin B! I cannot describe the difference it has made in my life. I have energy for the first time in lord only knows how long. I’m also taking vitamin E, Cod liver oil and a combined fish oil/olive oil/evening primrose oil.

Also as Kahuna says, eat six small meals a day, I've lost two more kilograms since I started doing that - after being on a plateau for nearly 10 months!

One other thing I've done is just general research into eating healthily. Book for that, YOU the Owners Manual by Michael F Roizen and Mehmet C Oz. For example, eat complex sugars with protein to give yourself a slow steady release of energy - dried fruit and nuts, cottage cheese and pineapple, peanut butter and an apple.

Also be sure to exercise, I cycle to work three days a week and go to the gym twice a week. Walking for 30 minutes is an excellent start and you can build up from there.

I'm actually sort of excited to have access to a group of people I can discuss these things with. I've looked at specific PCOS forums before and I always felt out of place because I don't want to have children.

One last thing, I've never had any medication to treat this, but I have been on the pill since Feb 03, got tired of the guessing when my period would show up.

 

[TBKahuna123]

Thanks Jo, I'm gonna check out those two books for my wife!

I just shake my head when I read both Jo and AP's posts about their doctors saying "come back when you want to have kids". That is EXACTLY what they told my wife too, and what happened? 10 more years of damage and now that we're trying to have kids, it's a HUGE struggle. If we'd started this therapy, getting everything under control years ago, we'd be having a much easier time having kids. But there's more to it than that.

For years my wife has fought depression, weight problems, unwanted hair growth, exhaustion, abdominal pain, irregular periods (if you can call once a year irregular). All because her doctor just brushed her off. We're lucky that we found a doctor who specializes in this. I just wish I had gone to the doctor with her when she first started her treatments, because I never would ahve let her quit. I didn't understand why she was having trouble tolerating the metformin, so I wasn't able to support her and help her fight through it. It's a lot easier doing the research together, because now I understand and can help her when things get too tought.

The good doctors are out there, you just have to find them. Referrals are best if you can get one. Even if you don't want kids now, there are treatments. My sister found a doctor who correctly diagnosed her, and gave her a choice: Take metformin and maybe get pregnant, or go on BC pills and get her system regulated. She chose the latter and is doing great.

I am not sure if it is appropriate for PCOS, and it is only a one time treatment, but what worked best for relieveing my symptoms was 2*12 weekly injections of Zoladex (goserelin acetate) which put me in a temporary menopausal state for 6 months, the hot flushes and mood swings were hell but the reduction in pain was wonderful.

This is what they originally gave my sister. The problem is, while it may relieve the inflamation and appear to work, it really is only temporary and has no long lasting effects on PCOS. This is one of those cases of misdiagnosis, as she was originally told she had endometreosis.

I'm just always amazed at how so many doctors can just not understand something that is obviously becoming very prevelant. It flabergasts me!

 

[Mary Hall]

I wonder if i too will suffer fertility problems.

 

[MelancholyBaby]

I guess I'm very fortunate in that I have been seen by two WONDERFUL endocrinologists, one was a reproductive endocrinologist who first introduced me to metformin. I wasn't trying to have children or anything but at the time I was near a teaching hospital and so I was able to see him. Anyway, within about three weeks of taking the metformin I had my cycle and we were encouraged by the progress (I think I was only taking 500 mg a day) but I very honestly couldn't tolerate it...I think anyone who has tried it will understand what I mean.

So when I moved my new family doctor referred me to another endocrinologist who was just as awesome, maybe a little more so...quite possibly he studied under the first doctor because Dr. 2 was at the same medical school as Dr. 1. I learned a lot from dr. 2. Basically I told him I couldn't do the metformin thing, that I would rather live with spotting and irregular periods than running to the bathroom everytime I eat something. He taught me a lot about PCOS. He basically told me this: they don't know a lot about it. They don't understand what causes it (weight gain and cystic ovaries are like the chicken and the egg) but they also know that it runs in the same circle with hypertension, hypothyroid, type II diabetes, and high cholesterol.

He put me on synthroid, adjusting it every month for the first little while. He also put me on actos as he felt it would help both my PCOS and my newly diagnosed diabetes. I've had luck with that.

I guess to sum it up I want to say this:

1. Find a Dr who understands that it is not just about getting pregnant but about living a normal life. One that won't give you the pill and say you're cured. (Yes, my first gyno was like that) I am not going to say that females doctors are more sympathetic because I haven't always found it to be the case. I think though that everyone has the right to be seen by an endocrinologist who truly understands the complexities of this disorder.

2. Be proactive and request that you get tests for thyroid levels, cholesterol, fasting blood sugar (2 hr glucose tolerance tests if necessary too), and also they may diagnose you by taking various hormonal tests (LH, Prolactin, etc).

3. Eat a carb controlled diet and try to exercise...even a little. Sometimes all it takes is a 5% reduction in body weight to improve your health...I know from experience this is the case with type II diabetes.

4. Don't be discouraged. About anything.

Oh, and I am the only one who has had their ovaries likened to swiss cheese and tapioca pudding on an ultrasound? Ick.

 

[lilwetone]

I was diagnosed when i was 16 (now 24)....ive been on and off BCP's and yo-yo diets.....My body changes from month to month....so im letting nature take its corse...

I guess if you excirsize and eat right you should be fine....


Good luck sweets!!!

 

[Noor]

Back in my 20's I was on spiralone for a year. It worked fine, I was fertile, face didn't break out, lost the weird hairs (and they didn't return) but it made my breasts huge! I was told they would go down when I went off, which they did, but not back to their original size.

About 6 or 7 yrs ago, when I was having problems with "flooding" I started using topical progesterine and only eating hormone free food. It worked

More recently, I have added Dr Nancy Dunne diet recommendations.

Oh my cysts come and go, so removing them wouldn't help much.

 

[SweetErika]

Mary's PCOS FAQ has been a fantastic resource for me. She's done a ton of research and gives the basics on different treatments concisely (as well as citing her sources if you want more detailed info). They're organized into categories by efficacy, so it's not too overwhelming. I've learned so much and taken the things I want to try to my doctor for her opinion/approval. Anyway, Mary's research proves there are are some very simple, effective, painless things we can do to improve and support our health, so it's worth checking out.

 

[TBKahuna123]

Oh, and I am the only one who has had their ovaries likened to swiss cheese and tapioca pudding on an ultrasound? Ick.

Nope, that's exactly how they describe my wife's ovaries.

 

[TBKahuna123]

I wonder if i too will suffer fertility problems.

Chances are, yes. I hate to say that, but it's one of the most common effects of PCOS, especially if you have cysts. They can take different forms too. My wife doesn't ovulate, thus has problems getting pregnant. My best friend's wife has trouble staying pregnant becasue of low progesterone levels from PCOS, and miscarries frequently.

The good news is that if you get treated for this it is an infertility issue that can be overcome easier than most. Because it's just a hormone/ovulation issue it can be treated with medication in most cases. Usually there is no structural damage causing the infertility. The Cysts may throw you hormones out of whack, but they don't really "damage" any of the organs. So there's the sunny side!