PCOS--what would you do if you suspected your dd might have it?

[Julie in CA]

I think my dd may have PCOS. Maybe it's too soon to tell, and I haven't even read about it thoroughly yet. It's just one of those things where you skim the basic information and think, "that's it exactly".

 

What would you do for your 12 yo dd if you suspected PCOS?

[Moxie]

Make sure she makes good diet and exercise a part of her life now. PCOS is much worse if you gain weight. Teach her about her cycles and tracking them so she will have an idea if she has fertility issues. Later, you might want to have her take an NFP class so she learns all the details of tracking her cycles.

[littlebug42]

As someone who suffers from PCOS that was not diagnosed until I was 28 and wanting to have children, I would try to take her to a reproductive endocrinologist. This is where I finally got my diagnosis and help. I had symptoms since I was a teen and the answer for every OB I went to was to prescribe bc pills. It took my current OB to finally ask the question "why" is all this happening. He referred me to the RE and I got the help I needed.

I have also been reading a lot about dietary changes due to insulin resistance that can go hand in hand with PCOS. I am looking at incorporating some of these changes into my diet.

[HollyDay]

Research, research, research......

 

From what I've read, an excellent diet is essential. Also, a diet and lifestyle free of xenoestrogens, and they seem to be everywhere. The nutritionist I used said lipsticks were a major offender. She gave me a list to avoid and had me look up ingredients of all my products from hair care to moisturizers.

[Moxie]

As someone who suffers from PCOS that was not diagnosed until I was 28 and wanting to have children, I would try to take her to a reproductive endocrinologist. This is where I finally got my diagnosis and help. I had symptoms since I was a teen and the answer for every OB I went to was to prescribe bc pills. It took my current OB to finally ask the question "why" is all this happening. He referred me to the RE and I got the help I needed.

I have also been reading a lot about dietary changes due to insulin resistance that can go hand in hand with PCOS. I am looking at incorporating some of these changes into my diet.

 

What did your RE do for you? Mine just suggests BCP :glare:.

[Matryoshka]

The best thing that helped me with my PCOS was staying on a lower carb diet. When I was trying to get pg with my younger dd I also used some herbal remedies. This worked far better than the fertility treatments I endured for my twins.

 

PCOS has at its roots insulin resistance, which is pre-diabetic. Keeping the weight down is key - added weight seriously exacerbates the hormonal imblances.

 

In my 20's I was put on the pill to "fix" my problem - the issue with that is that it only masks the problem, and when I went off it, my body couldn't remember at all how to regulate itself and I think it made it much harder for me. There are lots of online communiites that can help with more natural/dietary remedies for PCOS.

[Guest Alte Veste Academy]

This is a sensitive subject for me because of my resentment of doctors ignoring my irregular cycles like they were no big deal for my entire life until I was 28 and wanted to have a baby. The fact that the doctors shrugged off this major thing (central to childbearing!) like it was no big deal and wouldn't have implications for the future makes me angry to this day. That said, good for you for thinking of it when your dd is so young. It will be your job to help her stay as healthy as possible to prevent many of the problems that could occur with PCOS but, equally importantly for now, it will be up to you to protect her from too much information from the the doctors as you investigate this. There is not necessarily anything wrong with her knowing if she has it but there are some painful implications that you might want to protect her from. My doctor flat out told me I would have trouble getting and staying pregnant and that is too, too much for a child. My sister was told she probably couldn't have children when she was 15 and all she wanted was to be a mother. It broke her heart...and then she went on to have three healthy boys. My point is, educate her but shield her, you know?

 

You should start by doing some reading. I love Taking Charge of Your Fertility for understanding cycles, not just for pregnancy info (for now, just for you but you could share with your daughter as she gets older). I do not have a specific recommendation for a book about PCOS because I was struggling with this 10 years ago. (I actually didn't have any problem getting pregnant, just staying pregnant.)

 

Make sure she makes good diet and exercise a part of her life now. PCOS is much worse if you gain weight. Teach her about her cycles and tracking them so she will have an idea if she has fertility issues. Later, you might want to have her take an NFP class so she learns all the details of tracking her cycles.

 

:iagree: and the above book will help both of you with info on cycles. Don't think of this as bc info. It is empowering info. For the first time, I really understood how my body works. Empowering.

 

As someone who suffers from PCOS that was not diagnosed until I was 28 and wanting to have children, I would try to take her to a reproductive endocrinologist. This is where I finally got my diagnosis and help. I had symptoms since I was a teen and the answer for every OB I went to was to prescribe bc pills. It took my current OB to finally ask the question "why" is all this happening. He referred me to the RE and I got the help I needed.

 

I have also been reading a lot about dietary changes due to insulin resistance that can go hand in hand with PCOS. I am looking at incorporating some of these changes into my diet.

 

Absolutely, look into an RE. Primarily, for now I would work on weight if she has a weight problem and diet regardless. I have diabetes in my family and I'm convinced there is a correlation. I eat like a diabetic and have since pregnant with DS7. And exercise!! Do it together. It does not have to be about the PCOS or diabetes or anything else. To her and for all of your family, it can be about healthy lifestyle.

 

:grouphug:

Edited May 19, 2010 by Alte Veste Academy

[TravelingChris]

She is young for that to be diagnosed. How long has she been having her cycle? I would take her to a gynecologist. They can do a test like my dd had done to diagnose ovarian cysts and it is non invasive.

[Moxie]

She is young for that to be diagnosed. How long has she been having her cycle? I would take her to a gynecologist. They can do a test like my dd had done to diagnose ovarian cysts and it is non invasive.

 

I have a friend who has a 1 year old with some odd hair issues (showing up in strange places). Her doctor told her that it could be a sign that she already has PCOS :confused:. I don't know if I buy it but maybe it starts that young.

 

And you can have PCOS without having cycts (I don't) and while being fertile (I've been pregnant 5 times in 11 years). I think PCOS is a bad name. The syndrome is more about hormones then cysts.

[Greta]

The best thing that helped me with my PCOS was staying on a lower carb diet.

 

I don't have PCOS, but did some reading about it when two of my friends were diagnosed. This is THE number one thing I came away with: a low-carb diet is essential.

 

The more carbs you eat, the more insulin you make. Insulin is a hormone, and when it's constantly elevated, your body tries to compensate by adjusting the amounts of other hormones it produces, such as estrogen and progesterone. It's a chain reaction that throws everything out of whack. Our bodies just were not designed to eat the amount of processed carbohydrates that are the foundation of the modern diet. A lot of people talk about the dangers of xenoestrogens from plastics, cosmetics, hormone-treated food animals, etc. While not trying to diminish that at all, I personally think that the natural estrogen our bodies over-produce when we eat bread, pasta, cookies, cake, etc. is probably a MUCH bigger factor.

 

If you can find an OB/GYN or an endocrinologists that you trust, you should take her. There are probably a number of different causes for the symptoms she is experiencing. Don't take the word of a bunch of random people on a message board. :D

[elizabeth]

Take her to an endocrinologist who works closely with an excellent female OB/GYN.

[Ester Maria]

First, do a thorough blood check (even if she happens not to have any issues, a thorough blood check every once in a while doesn't hurt). Then go with those results to an endocrinologist and check up on the status of her hormones, and especially get her tested on metabolic syndrome and insulin resistance.

After that, no matter what they tell you, still go with all those results to a gynecologist to see if any further checks are needed (ultrasound etc.).

 

That's pretty much the standard procedure.

[Greta]

There was a conversation on these boards a few months ago about this topic (part of what prompted me to start reading about this) and Sputterduck recommended this forum as a good place to learn more: http://www.soulcysters.net/

 

She also recommended looking into "Paleo" or "Primal" diets (which are of course low carb and emphasize very natural, whole foods) I've read both NeanderThin by Ray Audette and The Primal Blueprint by Mark Sisson and liked them both. I do not recommend the book by Cordain, because his false demonization of fat is potentially harmful, especially for a young woman entering her childbearing years!

[littlebug42]

What did your RE do for you? Mine just suggests BCP :glare:.

 

Just to note, when I was finally sent to an RE, I was actually actively trying to get pregnant. That may have influenced the treatment I was given. After a few bouts with fertility medications, I finally had surgery. Since I did not ovulate on my own, my RE determined that it was because the shell/lining of my ovary was too thick to enable the eggs to get out. I had surgery where with a laser the RE drilled multiple holes in each ovary, offering the eggs a path out. I have since gotten pregnant four times (2 miscarriages) with no fertility intervention and have had regular periods since.

 

I still have some of the hormonal issues and I am working to control those with diet because birth control pills just send me over the edge and I refuse to take them anymore. He did tell me though that my younger years spent on bc pills probably did help preserve my fertility as the hormonal intervention helped prevent too much permanent damage.

[Julie in CA]

You know, it was just one of those in-passing comments from the physician's assistant at the ped. office that made me wonder. It's a bit of a sensitive issue for my dd, but she has...{why, oh why does this have to be the term for this??}...a buffalo hump. I tried to gently & casually ask about this during the course of a routine checkup, and the PA mentioned in passing that there were two possibilities: Cushings or PCOS. Then she mentioned that sometimes another symptom is the dark ring around the neck, and sure enough, dd does have that too. Because dd is also extremely overweight, the conversation moved very quickly towards healthy eating habits & exercise, and no action was suggested other than that. Now I'm wondering.

 

This dd is fairly active, walks 3 miles or so most days, and plays Wii fit, and runs around like a normal kid. She definitely eats too much, though she's working on that, and I think she does have a definite carb addiction thing going on. I've been eating low-carb, and I was wondering if it's appropriate for me to strongly encourage her to do so also.

 

It's obvious I need to do some reading about PCOS and Cushings, but I appreciate the been there/done that that I can get on this board, so I checked here first.

 

BTW, no menstruation yet, though I didn't really expect it yet. I was 13 when I started, and older dd was also 13 when she started, so I'm figuring my almost 12 yo has a little while to go.

 

My beginning reading has been, well....sorta scary. I don't think dd was really aware of what the PA was saying at that point, and I don't really want to talk to her about it or move ahead with seeking any kind of diagnosis until I understand more about the possibilities.

 

Thanks,

Julie

[Caraway]

As someone who suffers from PCOS that was not diagnosed until I was 28 and wanting to have children, I would try to take her to a reproductive endocrinologist. This is where I finally got my diagnosis and help. I had symptoms since I was a teen and the answer for every OB I went to was to prescribe bc pills. It took my current OB to finally ask the question "why" is all this happening. He referred me to the RE and I got the help I needed.

I have also been reading a lot about dietary changes due to insulin resistance that can go hand in hand with PCOS. I am looking at incorporating some of these changes into my diet.

 

:iagree:

 

 

I would very strongly advise against putting her on bc pills - which is the "solution" that most give for PCOS. While bc pills will force her to have a cycle, they just cover up the PCOS problem, they don't actually fix anything. And since you are adding more hormones to the mix it gets even harder to figure out what is going on.

 

The two things that have had the largest impact on my PCOS have been diet and Metformin.

 

Diet: Low carb for sure. I am gluten free and pretty much grain free. A diet like The Primal Blueprint by Mark Sisson is perfect. No soy. Real food. Preferably organic, grass fed, free range.

 

Drugs: Metformin is a drug used for diabetes, which is now being used for PCOS. It helps to deal with the insulin resistance issue. One of the big symptoms for me is that untreated I will only have a period about every four months. With diet modifications and Metformin I cycle about every 40 days. So still not perfect but much better.

 

This from Wikipedia: Another review recommended metformin unreservedly as a first-line treatment option because it has positive effects not only on anovulation but also on insulin resistance, hirsutism, and obesity often associated with PCOS.[4

 

I also recommend Taking Charge of Your Fertility.

[Ester Maria]

She definitely eats too much, though she's working on that, and I think she does have a definite carb addiction thing going on. I've been eating low-carb, and I was wondering if it's appropriate for me to strongly encourage her to do so also.

Not encourage, Julie, but force a diet regime and cut on the carbs and sugar- without discussion and without "trying", just do it. I know it's a sensitive issue, and she's a kid, but if she's not healthy, everything else is secondary. I didn't know the information you provided, but things put in that perspective, you should definitely start doing something about her overall health now.

 

I suggested you to get all the blood and hormones tests down first, and then with that go straight to the gynecologist, if needed, and to a good nutritionist who can make an eating and exercise plan for her. Don't rely on what you read on the internet or the boards - as a starting point those are good, but I think you need to handle the things with real-life professionals now. Even if PCOS turn out not to be the issue, a thorough check of blood and hormones and a nutritionist should help with her overall health.

It's better to prevent things, than to have to cure them later. Really, don't hesitate with this. It's not a life and death issue, but why suffer something you don't have to and why not be sure everything is okay - or, if it's not, take proper care of it?

 

Take care. :grouphug:

[Julie in CA]

Not encourage, Julie, but force a diet regime and cut on the carbs and sugar- without discussion and without "trying", just do it. I know it's a sensitive issue, and she's a kid, but if she's not healthy, everything else is secondary.

My concern with this dd is that the changes be gentle, and healthy. I would not be able to pinpoint why, but I'm concerned that this dd might actually go too far with her efforts to lose weight, and that the pendulum might swing the other way, so to speak. Encouraging without pushing too hard seems like the right thing, even though of course it would be better for her to drop the weight. For instance, she has been determined to take a walk before each meal. Great, right? Well, now if she can't get the walk in, she doesn't want to eat at all. Not great. I'd like her to find moderation.

 

We will continue to make good changes regardless of what diagnosis may finally be settled upon, and I really appreciate your advice about what to do next.

 

Thanks!

Edited May 19, 2010 by Julie in CA

[Caraway]

I suggested you to get all the blood and hormones tests down first, and then with that go straight to the gynecologist, if needed, and to a good nutritionist who can make an eating and exercise plan for her. Don't rely on what you read on the internet or the boards - as a starting point those are good, but I think you need to handle the things with real-life professionals now.

 

I would caution you that MOST ob/gyns and nutritionists do NOT have current information on PCOS. I cannot tell you the number of uninformed bad ideas that have come to me from "professionals". As someone who has dealt with this for a long time I would recommend using the internet to become VERY informed and THEN seeing a doctor. The soulcysters site linked above is a good one. As I said before most doctors will prescribe bc pills (not good!) and most nutritionists will point to a food pyramid full of grains and carbs (very bad!).

[Ester Maria]

I would caution you that MOST ob/gyns and nutritionists do NOT have current information on PCOS. I cannot tell you the number of uninformed bad ideas that have come to me from "professionals". As someone who has dealt with this for a long time I would recommend using the internet to become VERY informed and THEN seeing a doctor. The soulcysters site linked above is a good one. As I said before most doctors will prescribe bc pills (not good!) and most nutritionists will point to a food pyramid full of grains and carbs (very bad!).

Absolutely - let me clear it up, I just wanted to point to the fact that internet is a great resource of potentially insecure information as well as tons of useful material, and Julie mentioned it sounded so scary at first, so I thought, why to create more panic for yourself (maybe it's only my perspective though, I'm a complete hypochondriac when it comes to my kids and I cannot sleep peacefully if I don't know if everything is okay :)), seeing somebody as you read it might be a good idea to relax a bit about the whole thing, ask questions one-on-one and talk about a specific case once you have all the results of the tests in front of you.

 

I agree that there are uninformed doctors and that one needs to be very careful. And you're of course right about carbs, and birth control pills not being the optimal solution - we absolutely agree about that.

 

@ Julie: I see your point, girls that age do tend to be rather extreme. In that case, maybe a gradual change would overall be more helpful than a sudden cut of all bad habits.

I hope everything works out for you and for her.

For some reason I got upset by this story, probably because I have a 13 y.o. that has phases in which she hates food with passion, so every time I hear about girls of that age having food issues and potential health problems related to it, it touches me.

Take care of her, she'll be good. :)

[ScoutTN]

If you are open to non-traditional medicine, consider checking into accupuncture and Traditional Chinese Medicine. Acupuncture is often very effective for hormone balancing, infertility, severe PMS and other female issues.

 

My own life journey led me this way and so I have my two precious children. Find a practitioner who works together with and is not dismissive of Western medicine and has an excellent local reputation. Acupuncture is relaxing, painless and very gentle when most Western "fixes" for hormonal problems are definitely not.

[Liz CA]

Reproductive Endocrinologist or a naturopath who specializes in women's reproductive functions. If your suspicion turns out correct, the sooner you and she know the better she can deal with it.

[wapiti]

All the recommendations above are great. In addition to OB/GYNs and REs, another doctor that might help is an endocrinologist (not an RE), if you can find the right one (I would look for one at a large university medical center, and ask their receptionist who treats PCOS if it isn't on their website, or get a recommendation for an endocrinologist from a gynecologist).

 

If there is ever a decision to take an oral contraceptive, I really, really, really liked Demulen.

[cathmom]

Get the book Fertility, Cycles, and Nutrition by Marilyn Shannon and follow her recommendations.

[Cheryl in NM]

I suffer from PCOS, after trying medications for years I thought the best strategy was a total hysterectomy. I shopped OBs until I got one to agree to take everything out. My thinking was that if it was all gone then all my symptoms would go too. Wrong, PCOS is a hormonal imbalance. I haven't been able to successfully lose weight, even gained it while dieting. I still have sugar issues and have trouble regulating my hormones and suffer from depression. The only symptoms I alleviated were the "period" ones.

 

My advise would be to first getting a full blood work up and diagnosis. Then work really hard to find the things that control your daughters symptoms. Get her in the habit of making healthy choices now while she's young. If she's diagnosed with PCOS try natural alternatives before drugs; make sure her doctor understands that while it's a "woman" disease it affects the whole body and endocrine system.

 

I wish you luck!

[Forget-Me-Not]

With a buffalo hump and the skin-darkening, she needs to see an endocrinologist YESTERDAY. This is not a nurse-practitioner/physician-assistant kind of problem. This needs to be handled by a specialist. If you can get in to see a pediatric endocrinologist, that would be even better.