Wow, a Diagnosis
Jul. 2nd, 2007 01:43 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
unforthOkay. I'm going to try to keep this post in the "reasonable" category, but it's probably going to flirt with the boundaries of Too Much Information, and may cross it for some people. However, there are a few people on here who might actually want to know about this, I think, possibly, so I'm going to go ahead and post. Anyway, it'll help me keep it all straight in my own head.
But this is your warning: this post does a bit of a tango with TMI...
I've never had regular periods. This isn't a big deal, really, in fact there are obvious ways in which it's kind of nice to not get periods, sometimes for as long as a year+ (my record is 16 months). The only time I'm regular is when I'm on birth control. But I don't really like taking it, and anyway, it's very hard to get in Japan and I can't afford to buy a years worth upfront, so it's not really an option right now anyway. In general, not getting periods is bad for a woman's health because it means that her hormone levels are all over the place. Hormone levels affect mood and health in various ways I don't fully know and don't feel like looking up right now.
My old gynecologist in NYC did a few tests, told me it wasn't a thyroid problem (the most common cause of these sorts of things) and that I was clearly dysfunctional (though she said it nicer than that), and that I might have difficulty ever getting pregnant, but we'd deal with it when it was an issue. And she put me on birth control. Needless to say, I always found this "explanation" utterly and infuriatingly inadequate. Sure, tell a girl who really wants a family that she may never be able to have her own kids, and leave it at that, that'll go over GREAT.
In preparation for my departure to Japan, I've been getting my doctor's appointments in line after a couple of years of negligence. I went to nurse practitioner at the Health Center on campus, and when she heard a little bit about this situation she said she would make sure I got an appointment with an MD gynecologist at the health center who could really try to help. This is how I got to see Dr. Klein, a very nice woman - if anyone who has access to campus has girl problems, I recommend her, though it's a little pricey (at least for me, who isn't registered for classes next semester and therefore doesn't count as a student). Anyway, I saw her last Tuesday, and she listened to my whole...er...saga, and tentatively said that she thought I might have Polycystic Ovary Syndrome, or PCOS. $290 of blood work to test various...things...would make this clear: if none of the blood work showed anything, if all of my hormone levels were normal, then it was almost definitely PCOS.
My follow up appointment was this morning. And I do have PCOS. I did a little reading up on this over the last few days, so I could ask the right questions - they called me on Friday and told me that my tests were all normal, so I had a little bit of warning. Now I get to figure out what this actually MEANS.
5 to 10% of all women suffer from PCOS. How can this be so common when I've never even heard of it? The causes of PCOS are unknown. The effect, though, is that the body does not produce progesterone in high enough quantities to trigger ovulation (which causes cysts on the ovary in many cases, hence the name of the condition). Women who suffer from PCOS have elevated levels of estrogen in the blood, which increases the likelihood of endometrial cancer later in life, and also have elevated levels of androgens (ie testosterone) which cause various symptoms. Also, PCOS causes Insulin Resistance fairly commonly, which is a precursor to Type II Diabetes.
So that's what having PCOS means. But what does it mean for me? On the plus side, I have a very mild case. 50% of women who suffer from PCOS are obese. Many suffer from hair loss, acne, and other problems caused by testosterone. I suffer from the irregular periods, and I have one of the major testosterone side effects (I have lots of fuzz on my chin, to put it cutely ;) ), and I do have the tendency to carry weight in the belly, which is also a symptom. Furthermore, though generally technically "infertile," because everything actually does function, just not always quite when it's supposed to, the infertility is VERY responsive to fertility treatments, so after years of worry it doesn't look like I'm actually going to have much trouble having a family, which is a load off of my mind.
The aspect of all of this which is worrisome to me is the Insulin resistance and the highly increased risk of developing Type II Diabetes. Diabetes already runs in my family, so from what I can see this is really the only aspect of all of this that merits concern - I can "treat" the lack of periods with birth control pills or by taking prolactin (which is what I'm actually goign to do) to induce a period every few months, just to keep everything running fairly smoothly, and the extra hair is easily shaved - this is what I already do, so I know it's no big deal. But Diabetes is a life changing illness, and therefore I feel pretty strongly that the increased risk of it should also produce life changes to help make sure I never have to worry about it.
So I talked to the doctor, and found out what I need to do. Pretty much, I need to act as if I already have the problem, even if I don't, because this will help keep everything working the way it's supposed to. So I need to make sure that I eat regular meals most of the time, that I don't go too terribly long without eating (3 or 4 hours), that I avoid "white" sugars and try to stick to whole grains. I explained my current eating habits, though, and she laid down one other rule: less carb dependency, which will increase my bodies need to produce insulin and make the situation worse, and more vegetables and fruits.
Vile growing things! NO!!!
After years of managing with out the horrible products of the earth (not counting the beloved potato, wheat, and corn, which are starches, really, not vegetables and fruits) I can't ignore this any longer. If I want to do what I can to ensure that I don't develop diabetes (which, I was reminded while watching the X-Files last night, can kill you! and make you have to prick your finger several times a day! and is generally an annoying, life-management sort of illness) I have to start eating the damnable things. So we talked about how I could actually do this, found a short list of places I should start - with the few things I can actually stomach - and after the appointment I went to the store and bought some spinach, sweet peas, carrots and a couple of apples (I AM leaving in 3 days, no point in getting too much). I also found some yummy looking baba gannouj (which I ate for lunch and which was, in fact, quite yummy). Dr. Klein said I should try to replace on "snack" level slot in my day with something fruit-y or vegetable-y. And I am seriously going to try. I don't want to. I hate changing my eating habits this drastically. But maybe this is just what I've really needed all these years - a sharp kick in the ass and a serious danger to my health to get me doing what I should have been doing all along. It worked for my brother - when he was in HS he had very high cholesterol, and he completely changed his eating habits to fix it, and now he's okay.
So here I am. I've known something was wrong with me since I was 14 and still hadn't had my first period. And finally, I've got a name for it, and, based on the research I've done, I think a pretty darned likely diagnosis. I've got a concrete reason to exercise and eat right - not only is it generally good for you, but doing this helps to regulate the condition and will increase the likelihood that everything will run like it does in a normal person, AND it will help prevent the potential diabetes in my future. I've got a "treatment" - a prescription for a years worth of progestin to take with me to Japan. And, pleasantly enough, I've got some peace of mind. This has been stressing me out since I was in HS and first realized that something was really not right. It's been stressing me out - affecting my life decisions - even more since I found out that I might not be able to have children. And now, poof, life settled, I know what's wrong, I don't need to worry about the infertility, and I know what to do about it. And I get to feel lucky that I don't have raging acne, I'm not balding, and I'm not obese. Hey, things could be a whole lot worse. :)
I guess this is what a little bit of peace of mind feels like. I think I could get used to this feeling.
For now, though, I have to make myself eat an apple before dinner. Damn you, fruit of the earth!!!
In other news, my press did arrive (and, happily, all of the binding stuff fits in a single box with room to spare, which is very helpful for my packing for Japan prospects, I'm leaving for California on Thursday, I opened a bank account at Chase today, I've packed 10 boxes of books, there's a Harry Potter Salon at the Copper Cup tomorrow night at 8 PM to discuss the fifth book, and I need someone, if possible, to come and walk Jonie three to four times on Saturday.
I think that's the quick version of everything. ;) I'll probably write a longer post about something OTHER than TMI topics soonish, but for now I have other stuff I need to do.
But this is your warning: this post does a bit of a tango with TMI...
I've never had regular periods. This isn't a big deal, really, in fact there are obvious ways in which it's kind of nice to not get periods, sometimes for as long as a year+ (my record is 16 months). The only time I'm regular is when I'm on birth control. But I don't really like taking it, and anyway, it's very hard to get in Japan and I can't afford to buy a years worth upfront, so it's not really an option right now anyway. In general, not getting periods is bad for a woman's health because it means that her hormone levels are all over the place. Hormone levels affect mood and health in various ways I don't fully know and don't feel like looking up right now.
My old gynecologist in NYC did a few tests, told me it wasn't a thyroid problem (the most common cause of these sorts of things) and that I was clearly dysfunctional (though she said it nicer than that), and that I might have difficulty ever getting pregnant, but we'd deal with it when it was an issue. And she put me on birth control. Needless to say, I always found this "explanation" utterly and infuriatingly inadequate. Sure, tell a girl who really wants a family that she may never be able to have her own kids, and leave it at that, that'll go over GREAT.
In preparation for my departure to Japan, I've been getting my doctor's appointments in line after a couple of years of negligence. I went to nurse practitioner at the Health Center on campus, and when she heard a little bit about this situation she said she would make sure I got an appointment with an MD gynecologist at the health center who could really try to help. This is how I got to see Dr. Klein, a very nice woman - if anyone who has access to campus has girl problems, I recommend her, though it's a little pricey (at least for me, who isn't registered for classes next semester and therefore doesn't count as a student). Anyway, I saw her last Tuesday, and she listened to my whole...er...saga, and tentatively said that she thought I might have Polycystic Ovary Syndrome, or PCOS. $290 of blood work to test various...things...would make this clear: if none of the blood work showed anything, if all of my hormone levels were normal, then it was almost definitely PCOS.
My follow up appointment was this morning. And I do have PCOS. I did a little reading up on this over the last few days, so I could ask the right questions - they called me on Friday and told me that my tests were all normal, so I had a little bit of warning. Now I get to figure out what this actually MEANS.
5 to 10% of all women suffer from PCOS. How can this be so common when I've never even heard of it? The causes of PCOS are unknown. The effect, though, is that the body does not produce progesterone in high enough quantities to trigger ovulation (which causes cysts on the ovary in many cases, hence the name of the condition). Women who suffer from PCOS have elevated levels of estrogen in the blood, which increases the likelihood of endometrial cancer later in life, and also have elevated levels of androgens (ie testosterone) which cause various symptoms. Also, PCOS causes Insulin Resistance fairly commonly, which is a precursor to Type II Diabetes.
So that's what having PCOS means. But what does it mean for me? On the plus side, I have a very mild case. 50% of women who suffer from PCOS are obese. Many suffer from hair loss, acne, and other problems caused by testosterone. I suffer from the irregular periods, and I have one of the major testosterone side effects (I have lots of fuzz on my chin, to put it cutely ;) ), and I do have the tendency to carry weight in the belly, which is also a symptom. Furthermore, though generally technically "infertile," because everything actually does function, just not always quite when it's supposed to, the infertility is VERY responsive to fertility treatments, so after years of worry it doesn't look like I'm actually going to have much trouble having a family, which is a load off of my mind.
The aspect of all of this which is worrisome to me is the Insulin resistance and the highly increased risk of developing Type II Diabetes. Diabetes already runs in my family, so from what I can see this is really the only aspect of all of this that merits concern - I can "treat" the lack of periods with birth control pills or by taking prolactin (which is what I'm actually goign to do) to induce a period every few months, just to keep everything running fairly smoothly, and the extra hair is easily shaved - this is what I already do, so I know it's no big deal. But Diabetes is a life changing illness, and therefore I feel pretty strongly that the increased risk of it should also produce life changes to help make sure I never have to worry about it.
So I talked to the doctor, and found out what I need to do. Pretty much, I need to act as if I already have the problem, even if I don't, because this will help keep everything working the way it's supposed to. So I need to make sure that I eat regular meals most of the time, that I don't go too terribly long without eating (3 or 4 hours), that I avoid "white" sugars and try to stick to whole grains. I explained my current eating habits, though, and she laid down one other rule: less carb dependency, which will increase my bodies need to produce insulin and make the situation worse, and more vegetables and fruits.
Vile growing things! NO!!!
After years of managing with out the horrible products of the earth (not counting the beloved potato, wheat, and corn, which are starches, really, not vegetables and fruits) I can't ignore this any longer. If I want to do what I can to ensure that I don't develop diabetes (which, I was reminded while watching the X-Files last night, can kill you! and make you have to prick your finger several times a day! and is generally an annoying, life-management sort of illness) I have to start eating the damnable things. So we talked about how I could actually do this, found a short list of places I should start - with the few things I can actually stomach - and after the appointment I went to the store and bought some spinach, sweet peas, carrots and a couple of apples (I AM leaving in 3 days, no point in getting too much). I also found some yummy looking baba gannouj (which I ate for lunch and which was, in fact, quite yummy). Dr. Klein said I should try to replace on "snack" level slot in my day with something fruit-y or vegetable-y. And I am seriously going to try. I don't want to. I hate changing my eating habits this drastically. But maybe this is just what I've really needed all these years - a sharp kick in the ass and a serious danger to my health to get me doing what I should have been doing all along. It worked for my brother - when he was in HS he had very high cholesterol, and he completely changed his eating habits to fix it, and now he's okay.
So here I am. I've known something was wrong with me since I was 14 and still hadn't had my first period. And finally, I've got a name for it, and, based on the research I've done, I think a pretty darned likely diagnosis. I've got a concrete reason to exercise and eat right - not only is it generally good for you, but doing this helps to regulate the condition and will increase the likelihood that everything will run like it does in a normal person, AND it will help prevent the potential diabetes in my future. I've got a "treatment" - a prescription for a years worth of progestin to take with me to Japan. And, pleasantly enough, I've got some peace of mind. This has been stressing me out since I was in HS and first realized that something was really not right. It's been stressing me out - affecting my life decisions - even more since I found out that I might not be able to have children. And now, poof, life settled, I know what's wrong, I don't need to worry about the infertility, and I know what to do about it. And I get to feel lucky that I don't have raging acne, I'm not balding, and I'm not obese. Hey, things could be a whole lot worse. :)
I guess this is what a little bit of peace of mind feels like. I think I could get used to this feeling.
For now, though, I have to make myself eat an apple before dinner. Damn you, fruit of the earth!!!
In other news, my press did arrive (and, happily, all of the binding stuff fits in a single box with room to spare, which is very helpful for my packing for Japan prospects, I'm leaving for California on Thursday, I opened a bank account at Chase today, I've packed 10 boxes of books, there's a Harry Potter Salon at the Copper Cup tomorrow night at 8 PM to discuss the fifth book, and I need someone, if possible, to come and walk Jonie three to four times on Saturday.
I think that's the quick version of everything. ;) I'll probably write a longer post about something OTHER than TMI topics soonish, but for now I have other stuff I need to do.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2007-07-02 06:12 pm (UTC)It seemed odd to me as well when I went to a DR 5 years ago and they didn't tell me anything about it and now I a PCOS girl myself.
yeah!
*hugs* I understand right now exactaly what you are going through.
no subject
Date: 2007-07-02 06:28 pm (UTC)I've known something was wrong with me for so long that, in truth, it's really a relief to finally know WHAT is wrong. Three different doctors have done tests on me before, and, when they showed nothing, they shrugged and said there was still lots of time to figure it out. One doctor even told me that the hair I grow was definitely related, but even then she didn't say more. I'm so relieved to have some idea what I have. Now I have something I can DO about it, and I feel a whole lot better knowing than I ever did not knowing.
no subject
Date: 2007-07-02 07:48 pm (UTC)no subject
Date: 2007-07-02 09:07 pm (UTC)no subject
Date: 2007-07-02 10:11 pm (UTC)I am hopeful that you will really be doing great once you start on your new road to health!!!
no subject
Date: 2007-07-03 01:36 am (UTC)Medlineplus.gov should have some good info sources. If you weren't going to Japan there are some clinical trials going on, if you were interested in them.
no subject
Date: 2007-07-03 01:37 am (UTC)I got the impression from the doctor that fruit and veg "substitutes" wouldn't really cut it, though. Need the actual thing. Sigh.
no subject
Date: 2007-07-03 04:34 am (UTC)I think we should do a hormone swap. I probably need more testosterone -- you know, to make me less of a 'nice guy' -- and you need estrogen, which I stockpile in my body while listening to Celine Dion & Barbara Steisand CDs. Let's trade! :)
no subject
Date: 2007-07-03 04:16 pm (UTC)I guess three days before Japan is not the best time to say so, but if purees are more appealing, a blender costs like 15 bucks. (I used to have an extra one, but alas, it was already downsized when I moved up here.)
-K
no subject
Date: 2007-07-03 05:26 pm (UTC)no subject
Date: 2007-07-03 05:26 pm (UTC)