Living with PCOS

Miscellaneous and Personal Stuff I Must Share
1

I did a search for PCOS and noticed there are quite a few dopers who also suffer from this crappy syndrome. I am curious as to how everyone is dealing with all the symptoms.

I am currently trying to find a doctor who has a clue about it since my current doctor is not very helpful at all. I always feel rushed every time I go. I’m still having issues with the b.c.p.s she prescribed, but I really don’t even want to go back there again. I’ll just have to deal with the headaches and rollercoaster emotions until I can find someone who can really help me out. Hopefully they will fit in with this new HMO thing I got stuck in at work.

I’m really at the point that I hate the things it does to my body. Facial hair. Ugh. Thinning hair. No fun. and worst of all, I hateeee being fat. I have been doing some reading and realized that I haven’t tried a low carb diet yet. That, plus exercise, seems to be the recommendation for dealing with weight loss. I guess I shall give 24 Fitness a call and set something up there and start getting rid of all the food I love. I’m a carb addict, so that’s going to be extremely difficult for me. I need to get a diet plan from an actual doctor so I know what’s “legal” and what’s not on that sort of diet. For all of you who have tried those types of diets, which one worked for you?

I also read that a lot of people had to take some type of drug. Glucophage I think it was? I really hate taking drugs, so I hope I can avoid that kind of thing. I haven’t looked it up to see what it is used for exactly, but I will do that just to have more information for when I go to the doctor.

Any suggestions of what to ask/tell the new doctor? I am still pretty clueless about most of the syndrome. I’ve read some online, but I hate pulling that type of information up at work. People are so damn nosy. I need to spend a few hours here at home reading up on it I suppose. I just hate reading serious things online: Give me a hard copy and a hi-liter. :slight_smile:

Anyway, forgive my rambling. I just wanted to here from some of the other ladies on the board to see how they were doing and see if they had any advice to offer up. Maybe we can pool some information that will be helpful to us all!

God bless us all!

2

Kyann, I had PCOS. Then it was called Stein-Leventhal Syndrome. It wasn’t discovered until I had severe pain in my right ovary and had exploratory surgery done. The right ovary was twisted, my uterus was tilted back and there were so many cysts that they could not be counted. I had had superfluous hair since I was in elementary school.

I’m not certain what brought about a change in my condition. It could have been the initial surgery or the hysterectomy in my forties that made the difference. But I think there is every possibility that it may have been the hormones that were given to me after the hysterectomy that made the difference. I do know that my doctor said that if I quit taking my hormones (premarin) that the superflous hair would probably come back.

I used to have hair on my arms, knuckles and toes – not to mention annoying facial hair that made me feel a little unfeminine. Now I have no superfluous hair at all.

You didn’t say how old you are, but if the hair is a problem, I recommend having it permanently removed as soon as you can. It can be done by lazer or electrolysis. (But choose the person to do either of these procedures very carefully.) But you probably will want to see an endocrinologist and gynecologist first. Maybe just the hormonal changes will do the trick.

A small fraction of the women who have PCOS have false pregnancies. All of my tests were positive and it was weeks before I found out that I wasn’t pregnant.

You didn’t say how much overweight you are. The extra weight may make it harder to conceive. I became morbidly obese. Since I was more than 100 pounds overweight, I was able to have a gastric bypass. You may be able to accomplish weightloss with balanced nutrition and exercise. Each person is different. I do remember seeing a diet for people who are addicted to carbs (other than the Atkins diet) in a bookstore. You might also read up on sugar addiction.

I recommend seeing a nutritionist rather than just talking with your doctor about a balanced diet.

Those carbohydrates may result in a person’s being a little bit on the hostile side – or depressed. And that often leads to more eating and more weight gain.

So much more is known about PCOS now than when I was a young woman. I’m sure there are more options.

BTW, the PCOS never kept me from having plenty of boyfriends. And it need not keep you from conceiving.

I am not a doctor or a nutritionist.

I’m glad that you posted this thread! I had thought about posting it myself.

I hope this helps!

3

Hi, Kyann! If you’re near Dallas, try Dr. H. Jane Chihal. She was my doc for several years and is utterly fantastic.

No, PCOS is no fun. The symptoms are bad enough, but what worries me most is the largely increased risk of adult onset diabetes and all of the obesity-related illnesses.

One thing that has helped me enormously is cutting out sodas. I used to have a 40-60 ounce a day cola habit. I quit when I suddenly started having heart palpitations due to the caffeine. Since then, my appetite has changed, I’ve dropped twenty pounds, and exercise no longer seems like an impossibility.

There are some fantastic sites out there to help you cope with this disease. The more you learn, the better you are able to take care of yourself.

4

B]Zoe**

I have thought about electrolysis, but I wasn’t sure what the cost would be for something like that. Plus, it’s just so embarrassing. That’s the one symptom I really hate. I feel like I should have a pair of tweezers permanently attached to my hand. (I’m 27 BTW).
I looked up some PCOS friendly doctors, but haven’t had any luck yet. The two I have called both seem to work with infertility issues, and while I might have those, that’s not really my concern at the moment. I honestly don’t see myself as ever wanting to have children, so that aspect doesn’t bother me. And even if I do change my mind, I’ve said my whole life I would adopt anyway. It’s always seemed kind of selfish to me for everyone to keep having so many children when there are already so many out there who need love.

Truthfully, I’m not sure how overweight I am at this point. I know it’s getting out of hand though and I really feel like I need to seriously address it. I’m quite sure it’s getting close to the 100 lb mark. I don’t think gastric bypass is an option for me, simply because of the cost. From what I’ve heard, it is extremely difficult to get insurance to cover anything like that and I can’t afford to do it myself. Maybe in the future, but not right now.

I’m going to the library tonight so I’ll look for some books to see if I can find any low carb diets. Its going to be so difficult for me to do any kind of diet like that though. I would eat just bread for breakfast, lunch, and dinner if I could. I don’t think carbs make me hostile, but I think I’m definitely depressed at this point in life. Way too much crying going on for me lately.

As for boyfriends, I have the greatest guy I could ever ask for. He loves me and never mentions any stray hairs I miss or the fact that we are both going bald together. He’s wonderful. I don’t plan on letting him go any time soon! We’ve been looking for engagement rings for the past month, so everyone keep their fingers crossed for me! :slight_smile:

B]Phouka**

Unfortunately, I’m not that close to Dallas, but I thank you for the suggestion. I live in Houston. I’m going to keep researching and surely I’ll find someone soon. I will not go back to my current doctor though. I hate feeling like she’s shoving me out the door with a prescription for bcps. I need a bit more attention than that I believe.

I totally agree about the risk of diabetes. I’m so afraid of that. That’s one reason why I want to start a new diet to get some of this weight off. Sodas…ugh. I have had an on/off battle with giving those up for years. The headaches I get every time I try to quit always make me run to the vending machine and grab one. I guess I need to research how to deal with caffeine addiction too. I had quit for a while at one point but I got tired of juice and water so I picked one up one day and the rest is history.

Thank you both for your concern and suggestions. It’s nice to have someone to talk to who can understand. :slight_smile:

5

When you do decide to do some reading online, try http://www.soulcysters.com/ I highly recommend it.

I am a PCOS “success story.” I was diagnosed at age 25, although the symptoms (mainly weight) appeared much earlier. I was infertile and overweight until age 40ish when I started taking glucophage (aka metformin) and lost 100 pounds, started ovulating, and greatly improved my cholesteral and tyiglycerides, thereby lowering my risk for heart disease.

Kyan22, one important thing to know about PCOS is that although it was originally thought of as a reproductive disorder, many doctors now think of it as a metabolic disorder that affects insulin levels and blood cholesteral levels, as well as having the well-known hormonal effects. In other words, it isn’t just hair problems, weight, and infertility, but eventual diabetes and a greatly increased risk of heart disease. You are luckier than some of us in that more is known now than when we were diagnosed. I assume that despite my current good health, some damage was done and I will eventually develop diabetes. IMHO, it can’t have done my body any good to have insulin levels that were 5 times normal for years and years. You, on the other hand, can do something much sooner–and you should, despite your dislike of pills. I don’t mean to be rude, but if you have high insulin levels, you will have to just get over your dislike of pills, for the sake of your health.

My strong recommendation is that a) educate yourself on PCOS and the connection between it and hyperinsulimia, b) see a reproductive endocrinologist, c) get your insulin levels checked and d) very seriously consider taking glucophage if your insulin is above normal. Don’t worry about the MDs being infertility specialisths. Although I am not interested in having children, my RE is an infertility MD, too. They are the people who know most about this, so don’t worry if the infertility angle doesn’t matter to you.

Feel free to email me. My address is in the profile.

6

I just found a great, short article on PCOS and insulin resistance for you. I hope you don’t have to register to access it, but if you do, I can assure you that I am registered there and I don’t get any junk email, etc.

http://www.soulcysters.net/showthread.php?s=&threadid=10914

7

Brynda,

Thanks for the advice. Even though the doctor I went to year before last told me that PCOS was the like cause of the problems I’d been having, she never stressed the actual seriousness of it. She gave me bcps and offered some other medication to deal with the hair issues. That was it. I read an article or two about it later, but I guess I didn’t fully comprehend exactly how serious it was. When I moved down here to TX, I basically had to pick a doctor out of a list of people I didn’t know, and I guess I made a bad choice. I don’t think she is aware of the condition at all.

Lately I’d been thinking about all the problems I’ve been experiencing and decided to do a bit more research into PCOS. I’m really starting to see the seriousness of the condition. That was one reason for starting this thread. I need to find out all the information I can and start dealing with it now before I get really sick. I’ve been trying to set up an appointment with one of the doctors I saw recommended on a PCOS website, but I haven’t had any luck getting in touch with the New Patient Coordinator. I guess she must be really busy because I get voice mail every time I call. There are only 2 of the recommended ones that are covered by my insurance plan, so I guess I shall have to be persistent. I’m going to try the other doctor today and see if I have any better luck there.

I’ve been printing off pages and pages of information this morning to read over lunch. I plan on becoming much more educated this week. I can already see that my diet has been very very bad and is for sure the first thing I need to work on.

Thank you so much for you information, suggestions, and the link. I’ve printed that out and added it to the top of my “to read at lunch” stack. This is definitely a wake-up call for me. I should have realized long ago that it was serious, but the doctor’s didn’t seem concerned and they should know better than me, right? Hopefully I’ll find a new one who can really help me. I’m ready to deal with it now.

8

Brynda is right…although PCOS is no longer just a reproductive disorder, it is the reproductive endocrinologists who have the most experience with it. I hated my last RE and decided not to go back. So, I needed to find a new one because you should always stay on top of it even if you think you never want children. I have an appt. with a new doc in June. She’s one of the best RE’s in the state and specializes in PCOS. I need to get my diet back on track but I quit taking glucophage and then I got pg. None of the things my previous RE did helped me get pg. In fact, I don’t feel that my PCOS was treated at all. If you need a new doc, try www.inciid.com . They have physician referral section for specialists in endometriosis, PCOS, male factor infertility, etc. You can also email me (in my profile) if you have other questions.

PCOS SUCKS! :smack:

9

I agree with all of the above. I complained for YEARS about the symptoms you describe before getting an OB/GYN who put me on the pill and gave me a mild PCOS diagnosis. However, the pill didn’t stop most of my problems, and my doctor would just hand me these high-carb diets that were less nutritionally sound than what I already ate. When I started having pins and needles sensations in my fingers and toes, I finally got a new doctor and asked him to test my blood sugar. It was not a surprise to me bt that point to find my blood sugar was off and that I probably had what is being called “Syndrome X,” “Metabolic Syndrome,” or “Insulin Resistance Syndrome.”

The ONLY thing that’s made a difference in my weight is following the diet and exercise plan in Whitaker, Reversing Diabetes. The diet the hospital nutritionist gave me was not helpful because it was very low fat and contained many refined carb products. I am not a medical doctor but I do have a doctorate, so I went to the research literature and found many studies supporting a low-carb, high-fiber, moderate fat diet plus moderate exercise. Since January 20 I have lost 35 pounds and lowered my blood sugar to the normal range I’m still on the pill but I’m talking to my doctor about at least switching me to a low estrogen pill to see if that’s just as effective.

My weight is down, my muscles do not hurt all the time (and actually warm up when I exercise), my asthma is better, my skin is clearer, and my hair is growing in more thickly (except on my face, where it’s slowing down).

Electrolysis: You won’t embarass the electrologist. She’s used to it. If you’d feel better with less facial hair, see a good electrologist even if it makes you feel emotionally uncomfortable.

Best of luck!

10

What a headache!!! Both of the two recommended doctors I found only deal with PCOS as it relates to infertility. I did make an appointment with my PCP to try and get a referral to someone though. I’m pretty clueless at this point. What kind of doctor do I need? I don’t want to talk about infertility, JUST my other symptoms. Do RE’s deal with just that? Errrr… This is so frustrating. What type of specialist should I ask for a referral to?? I really want to take care of this, but it is more difficult than I thought. No one seems to want to deal with it unless I want a baby.

11

My new RE that I’m seeing June understands that I’m not seeing her for my infertilty issues…I’m seeing her for mainteance of PCOS and endo (although we plan on trying again in the next six months). If you can’t find an RE for strictly maintenance treatment of PCOS, try a regular endocrinologist.

12

Maybe it is just because I am currently recovering from my second plastic surgery thanks to PCOS, but I am so pissed off about this disorder and the lack of knowledge about it that I want to take someone’s head off. I am trying instead to be happy (and I am happy about this, really) that the OP and others reading this will learn and benefit. I have to say, though, that it doesn’t surprise me a bit that women with this are being told just to take a bcp to regulate their periods, as if that is all that is important. Hell, even worse, there are thousands of fat women out there blaming themselves for their weight who have this condition and don’t know it. And the kicker is that their MDs don’t know, either, and if they do know, they get the bcp and on and on.

Virtually all of the MDs and nurses I have run across since I began taking glucophage do not know anything about my disorder. When I tell them I take it, they ask if I am diabetic. Fair enough, most people who take it are. But when I say, no, I take it for hyperinsulimia related to PCOs, they all say, “What’s that?” Of about 6 or 7 MDs and an equal number of nurses, two had heard of it–a surgery intern whose wife was a gyn and a nurse who had PCOS herself. So when I run into this, I launch into my mini lecture. You should have seen me prepped for surgery talking to the anesthesiologist.

My health has been greatly compromised by this lack of awareness. I spent 25 years being obese, with all the health and social implications that brings. I would probably still be in just as bad health if I hadn’t educated myself. My hyperinsulimia (aka insulin resistance) was diagnosed when I read about it online and asked my gynocologist to have my blood levels tested. It wasn’t his idea, nor had the reproductive endocrinologist I was seeing at the time recommended it. Granted, the first articles on this had only come out about 2 or 3 years before, but still I would have expected an RE to know. GRrrrrrrr!

And then I read crap in weight threads about how “very few” people have metabolic disorders causing their weight. Yeah, well, that is what the idiot RE told me, too–“You cannot eat normally and be this weight.” Wrong, apparently, since my caloric intake wasn’t that different when I did lose weight, only the carb intake and the regulation of my insulin.

Right now, even worse are the threads in which people say that plastic surgery is the “easy way.” Yeah, having an incision from hip to hip with my tummy tuck was the easy way, indeed. And now having incisions go halfway around each thigh–easy, easy, easy.

Ok, rant over. Kyan22, you made me feel much better by taking all this seriously. If your health is less compromised because of what you are learning now, that helps.

Oh, and laser hair removal rocks. :slight_smile:

13

Brynda,

What you say is so very true. The lady at one of the Dr’s offices basically said the same thing. Nobody wants to deal with this. I now have an appt w/ my PCP on Monday, and an appt with the Gyn I don’t really care for the following Monday. Between the two of them, maybe one of them with either help me or at least try to help me find someone who will. I’m taking all the printouts I printed today with me to both appointments too. I haven’t had any bloodwork done for a long time, so I guess one of them needs to start there. I’m determined someone is going to help me deal with this dammit. I don’t want to deal with diabetes later in life unless I absolutely have to. And I’m so tired of being fat. I did good this morning. No biscuit for breakfast! :slight_smile:

14

Ladies, I want to share something with you. I have been using a progesterone supplement for the last 3 months. I use it for days 5-28 (or so) and my period starts soon after I stop. My cycles usually last 3-4 months. Since I startee with the supplement, they’ve become much more regular. The first month, my period came about 2 weeks after I stopped the supplement. The second month, about 4-5 days later (and I ovulated for the first time in about 22 months!). I’m in my third month now. We’ll see how it goes. It’s a cream that I apply topically and is made from plants. I also have very little pms and very few cramps. The cream I use is made by Arbonne International, a swiss skincare company that specializes in all-natural, animal- and environment friendly products. If you email me, I can tell you how to get it but I don’t want to here becsue I don’t want to spam the boards. My home email is in my profile or you can email me at work (which is where I am now) at single@ba.k12.ok.us

Remember, IANAD and all standard medical disclaimers apply.

mmm…

15

PCOS sucks a big fat one, But Low carbing helped reduce alot of my symptoms, in fact I even started ovulating again recently. I am still working on the wonderbeard but all in all its getting better. Hang in there :slight_smile:

16

IANA MD.

Tell whatever medical provider you see that you want a fasting glucose test, and if the results are at all high, ask for a two-hour glucose tolerance test. If they ask why, tell then that a number of women with PCOS have also told you that they had insulin problems. If they don’t agree to give you at least a fasting glucose test, you may want to get a new provider. This is an easy test, my MD friends say that labs make money on it, and it is relevant to your PCOS diagnosis.

17

Thanks Shoshana. I’m getting tons of literature together to take with me when I go to the Dr on Monday. If the doctor I’m seeing doesn’t want to be helpful, I’m hoping he’ll at least give me a referral to an endocrinlolgist. We’ll see how that goes.

I really want to thank everyone again for their advice. I hope by educating myself I’ll manage to get this under control before it gets any more out of hand.

Now I just have to figure out what the heck you CAN eat and drink on a low carb diet. :slight_smile:

18

IANAD either, but I would recommend you have them check your insulin when they do the fasting glucose. Apparently, the ratio of glucose to insulin, as well as the absolute level of insulin, is diagnostic. I have heard that the glucose only rises well after the insulin has been high, perhaps for years. I know my glucose rose only in the last several years before I started glucophage. Before that, it was normal.

A quick summary of what you can eat is: All meats and cheeses and most green vegetables (spinach, cabbage, greens, etc).

To be avoided/limited are: starches (rice, bread, pasta), fruit (that’s a hard one) and sweets of any sort.

Other vegetables require that you look up the carb content, either online or at a chart in the grocery store. My local Meijer’s has a chart right in the produce section. For example, who knew that squash are relatively low carb? Or carrots are pretty high carb?

Good luck!

19

Basically, you can’t eat anything white (or orange/yellow, to some extent). As far as bread is concerned, you can make bread with soy flour that is lower in carbs.

20

Gee Whiz! I have never heard of this problem until just recently on the boards here. What a drag! I hope you find the right doctor and the right mix of drugs and food to get back to being your old self.