My advice, thoughts and opinions on PCOS

A lot of women  may not be aware that they have PCOS. The list of symptoms is so long and varies so much from woman to woman. It's not a one size fits all disease. Some women are simply "diagnosed" that they most likely have PCOS. A lot of these women will most likely not be given the proper information about this disease. They will be left on their own to figure it out, some will search to find the answers but some will not know the importance of getting the right information until they want to conceive a child. Some women end upl "self diagnose" themselves as having it but not know what to do or where to go after that. Most gyno's knowledge of this disease fall between very little knowledge to moderate knowledge. They don't want to deal with the issues that go with it. You see PCOS has such a wide range of side effects, that a lot of the issues go outside gynecology. If you have PCOS you actually need to see specialists, unfortunately there aren't specialist (at least that I am aware of and trust me I have searched) that deal only with this disease or are 100 % knowledgeable with this disease and are able to deal with ALL the issues and side effects that come with this disease. Really the knowledge of PCOS is still in it's infancy. A doctor who deals souly with PCOS would be ideal, because it's not a one size fits all disease, it tends to vary per customer (so to speak). However that is not the case, you need to see an Endocrinologist and a Woman's Health Specialist (and no that isn't a simply Gyno or Obgyn). Endocrinologist specialize in the field of Endocrine and it's diseases. Now I must be honest the one Endocrinologist that I saw for over 3 yrs never really dealt with my PCOS, she dealt more with my diabetes (which just happens can be one of those wonderful side effects of PCOS). I was referred to her originally for my PCOS by my gyno but she just never dealt with it unless I asked her a specific question in regards to it. I have recently been told a story about someone who also saw an Endocrinologist, who simply told her to loose weight and all her issues would go away and she would be able to get pregnant. Yes, while loosing weight can help a lot with PCOS it's simply is not the end all answer. First of all, to me that is misleading information as she'll still have PCOS and loosing weight simply will not get you pregnant. The true fact is, is that it can help to increase your chance of getting pregnant (but will not insure that you will get pregnant) and it more likely being a viable one, that is it. Yes loosing weight can also help a few of the symptoms of PCOS disappear over time. Second of all, weight is one of the symptoms of PCOS and most PCOS women deal with being overweight. Loosing weight for a PCOS woman is a life long struggle, that can be exasperating and yielding in very little results over a long period of time. We have to 100% harder than average person to loose even a pound. Food simply isn't a PCOS woman's friend. Back to the Endocrinologist, you will need to find one that is knowledgeable in the field of PCOS -- as it seems that not all Endocrinologist seem to be in this area. It may take a little bit of "shopping around" to find the right fit. Before I go any further, please know that this information is just a matter of opinion based on my own personal experiences with PCOS and the stories that I have heard from other women who also have to deal with PCOS on a daily basis. In my circle of friends and acquaintances, I know of at least 11 of us who are journeying through this pretty much little known world of PCOS. My personal opinion is that PCOS has been around since the fall of man. Because of the wide range of symptoms that a woman can have, it went undiagnosed pretty much until the late 20th century. If you think about the Fat Lady and the Bearded Lady in the circus and side shows, to me it seems highly provable that they suffered PCOS and it's symptoms. This is why I say the knowledge of PCOS is still in it's infancy. There is still just not much known about it. I also have noticed a common factor in a lot of my friends, a lot of us seem to have a family member (like a great grandma, grandparent and/or parent) who had Diabetes and/or Infertility issues themselves. This leads me to think that there might be a gene or some other inherited factor to PCOS. While I am pretty knowledgeable with PCOS, that doesn't mean to say that I am an expert by any means. For all I know, researchers have already come to this same conclusion about there being a gene or hereditary factor. I do know that my specialist told me that if I had a daughter that there would be a chance that she would have PCOS too. Okay now on to what I mean about a Woman's Health Specialist. I am talking about an infertility specialist, even if you aren't thinking about or trying to get pregnant. In my personal experience they seem to be the most equipped and knowledgeable to deal with PCOS as a whole. They have a better tendency of hearing you out and giving you the proper knowledge about PCOS. They aren't in a rush to get to the next lady and give her a pap smear and yearly exam, so she can be on her way. They seem to know that PCOS isn't a one size fits all disease. They will have a lot of answers and not just for the infertility side of it. To me they are worth their weight in gold. No just because you see an infertility specialist (make sure that they are knowledgeable in Woman's Health issues not just a get you pregnant doctor --- like "shopping around" for an Endocrinologist, you most likely will have to do so with this type of doctor too) doesn't mean your insurance wont cover it and label you infertile. As long as you are seeing them for health issues and not to get pregnant, your insurance should cover them. So far my insurance has covered everything that wasn't related with trying to get pregnant. What I mean is last year when I was trying to get pregnant they didn't cover the meds, most of the check ups -- including the ultrasounds and the like to see if we were successful. But when they found the hyperplasia and all the surgeries that I had to have to get that under control, it was covered. They have covered all my progesterone shots in the past and present that I have needed to "jump start" my cycle when it doesn't come on it's own. They have covered all the ultrasounds for checking on my ovaries for cysts and growths, even now after the trying to get pregnant and the hyperplasia. And just because you are seeing an Woman's Health Specialist doesn't label you infertile and uncoverable by your insurance company. We've had 3 or 4 different insurance companies since I was diagnosed with PCOS and I have never been denied coverage for it. Basically your health is important, you are your own best advocate. Remember you have to live with your body and your health issues, they don't. You know your body and what works and what doesn't (point in case, I know that taking progesterone pills don't work for me. That I have to get a shot of it. My gyno tried to argue with me and tell me that taking the pills were the new way of doing things. Well while this may be true, it's not what works for me and my body. It may simply be that because I have had to have progesterone intervention so much and it has always been done by a shot, that that is what my body has become accustom to. A sudden high dose of progesterone all at one time, not small doses give over a 5 to 7 day period. To me if a doctor is going to argue with you about what you know is best for your body, then they need to be "fired" by you. They need to be able to work with you, listen to you and come up with a plan that works for you as an individual. Health issues of any kind don't seem to be one kind fits all and therefore treatments will vary and individuals vary. Also please know that if you are dieting, any type of diet (even the PCOS diet), results will vary per individual. What works for one might not work at all for another. We are each unique individuals and because of that nothing really is one size fits all, it's more like one size might fit some and at best, most). Do your research, be knowledgeable and go armed, when you see your doctor(s). Find doctors who are knowledgeable, willing to listen and help. If your doctor isn't, then "shop around" for one that is and will. There is nothing wrong with finding a doctor who fulfills and goes beyond your expectations, because your health is nothing to take lightly. PCOS is nothing to deal with on your own, simply because of it's wide range of symptoms. Like I said earlier ultimately a doctor who dealt souly with PCOS would be ultimate but since that doesn't seem to be a possibility at this time (if you do happen to be a very fortunate soul and have a rare doctor who does this, then let it be known so that others can benefit from them), we have to do the next best thing, take our time and see a couple of doctors. Ultimately try to get them to communicate and even possibly work together, for the betterment of your health. Once again, these are just my thoughts and opinions, based on my own experiences and what I have heard from others who also suffer from this disease. Finally, I want to beseech you, that if you are a woman who suffers from PCOS and it's various symptoms, please share with others your journey, your walks and your trials with this disease. I know it's a very demeaning, demoralizing, de-womanizing disease and something that embarrasses a lot of women. If you are reading this because you know a woman who is effected by this disease, then please go to her, ask her about it and most of all honestly listen to what she has to say. Encourage her to open up with other women and share her experiences. I belief that part of the reason so little is still known about PCOS, is because we don't talk about it openly with each other as women.