(When I first imagined writing all this out, I thought I'd do it in one, maybe two posts at the most. I guess I had more to say about it than I realized.)
I'm going to step up on my soap box for just a moment. After pretty exhaustive research, it is my personal and professional opinion that all women with PCOS should be on metformin. It's cheap, it has very few potential long-term side-effects, and it's effective. It increases your chances of getting pregnant, increases your chances of staying pregnant, increases your chances of successful breastfeeding, decreases your risk for diabetes- both gestational and Type II, decreases your risk of many kinds of cancer. It may not be a silver bullet, but it sure helps to level the playing field. And yes, the short-term side-effects suck and it's no fun to have to take a pill or three every day forever, but, I think it's worth it.
And so, I started taking metformin. In my research, I had discovered that if metformin is going to help regulate your period, it will most likely do so in the first six months. My plan was to do just metformin for the first six months to see if my cycles would straighten out and if I would ovulate on my own. Please forgive my memory on this one, but I had also read that if you ovulated later than day (let's say) 20, you were X% more likely to have a miscarriage, if you actually managed to get pregnant at all. The jist of it is that egg quality starts to rapidly decline as cycle length goes on. So, the other part of my plan was that I would do blood work on day 20ish and if there was no sign of impending ovulation, I would take prometrium or yaz for ten days and then have a withdrawal bleed and start a new cycle.
I started on a low dose of metformin- 500mg once a day and gradually increased up to 850mg three times a day. I couldn't find any convincing information on how to appropriately calculate the dose needed and no one else I talked to seemed to have a firm answer either. So I decided more was better in this case. I'm not exaggerating when I say working up to this dose was an ass beating. I had some nausea and food aversion on the lower doses, but at some point I started throwing up and didn't stop for six weeks. Most of the time it was related to what I ate. Anything with carbs would make me puke. I lived off of cheese and protein shakes during this time. My husband was freaking out, but I kept reassuring him (and myself) that it would get better. And it did. A few weeks after I got to the highest dose, things started to settle down a bit. I still couldn't handle a lot of sugar and logically I knew that was probably a good thing. Illogically, I sat on the couch and cried because I thought I would never be able to eat a donut again.
The good news was, after about three months of metformin the side effects had mostly gone away and I had lost 25lbs. The bad news was, there was still no ovulation. I continued on with "the plan" though, determined to wait the full six months before moving onto the next thing. Another three months rolled by with the same results- no ovulation, no period. It was time to get serious.
To be continued...
Monday, June 25, 2012
Wednesday, June 20, 2012
Path Part 2- Becoming an Expert on Me
Picking up where I left off...
Lest you think I took my self diagnosis and ran, I did not. Even though I am qualified to and have had many opportunities to diagnose other women with PCOS, I sought other opinions. I got a second opinion from my personal nurse practitioner, third and forth opinions from OB/Gyns I worked with, a fifth opinion from our infertility nurse, and eventually a sixth opinion from an RE who supposedly specialized in disorders of the ovaries. What surprised me was not that they all agreed with my diagnosis, but how little they actually knew about PCOS beyond the textbook blurb we had all learned in school.
Every single one of them said the same things- "labs and sono are textbook PCOS, but you don't look like you have PCOS; take clomid." I try to take the not looking like I have PCOS as a compliment (I suppose) and I admit, this is at least partially where my denial came from. We're taught in school women with PCOS are obese, have facial and maybe chest hair, acne, some even have male pattern baldness. But these physical characteristics are not part of the diagnostic criteria. I check all the boxes for the primary clinical criteria and most of the supporting criteria. Even after knowing all that, medical professionals have to comment that I don't "fit the profile" because I'm not obese. It's not like they disagree that I have PCOS, just like they don't understand how that happened if I'm not overweight. The craziest thing about that is that only 60% of women with PCOS are overweight. That means these healthcare professionals are likely dismissing this as a possible diagnoses for a huge number of their patients because they lack a physical characteristic that isn't even one of the diagnostic criteria. Ahhhh! Anyway....
I realized I wasn't going to be able to turn to anyone else for easy answers, so I started doing my own research. Fortunately I had lots of resources- my medical textbooks, medical data bases, and of course Google. The most important thing I found is that "thin" PCOS is different from "normal" PCOS. It has a different hormone profile, different responses to treatment, and probably even different causes (even though the cause of neither is fully known or understood). Logically you would think being thin with PCOS would improve your chances of getting pregnant, but it does not. Heavy women tend to have higher levels of estrogen, which can be helpful when you're trying to conceive. Thin women with PCOS tend to be poor responders to ovulation stimulators and have lower rates of success with IVF.
I researched everything I could get my hands on. I truly became an expert on PCOS. I don't mean this in a bragging way (well, maybe a little), but I honestly don't think I know another healthcare provider in real life, who knows as much about PCOS as I do, specifically "thin" PCOS. I started to devise a plan, figure out what medications where most likely to work for me, what lifestyle changes I could make to improve my chances. This really helped give me a sense of control over the situation. Instead of focusing on how disappointed I was that my fairytale plan of an easy conception was being shattered to pieces, I could focus on what I wanted to do about it. And again, I'm struck with how fortunate I was to be a position to just do it. I could do what was best for me without having to ask anyone else for approval or permission.
So I came up with a plan and that plan was metformin.
To be continued...
Lest you think I took my self diagnosis and ran, I did not. Even though I am qualified to and have had many opportunities to diagnose other women with PCOS, I sought other opinions. I got a second opinion from my personal nurse practitioner, third and forth opinions from OB/Gyns I worked with, a fifth opinion from our infertility nurse, and eventually a sixth opinion from an RE who supposedly specialized in disorders of the ovaries. What surprised me was not that they all agreed with my diagnosis, but how little they actually knew about PCOS beyond the textbook blurb we had all learned in school.
Every single one of them said the same things- "labs and sono are textbook PCOS, but you don't look like you have PCOS; take clomid." I try to take the not looking like I have PCOS as a compliment (I suppose) and I admit, this is at least partially where my denial came from. We're taught in school women with PCOS are obese, have facial and maybe chest hair, acne, some even have male pattern baldness. But these physical characteristics are not part of the diagnostic criteria. I check all the boxes for the primary clinical criteria and most of the supporting criteria. Even after knowing all that, medical professionals have to comment that I don't "fit the profile" because I'm not obese. It's not like they disagree that I have PCOS, just like they don't understand how that happened if I'm not overweight. The craziest thing about that is that only 60% of women with PCOS are overweight. That means these healthcare professionals are likely dismissing this as a possible diagnoses for a huge number of their patients because they lack a physical characteristic that isn't even one of the diagnostic criteria. Ahhhh! Anyway....
I realized I wasn't going to be able to turn to anyone else for easy answers, so I started doing my own research. Fortunately I had lots of resources- my medical textbooks, medical data bases, and of course Google. The most important thing I found is that "thin" PCOS is different from "normal" PCOS. It has a different hormone profile, different responses to treatment, and probably even different causes (even though the cause of neither is fully known or understood). Logically you would think being thin with PCOS would improve your chances of getting pregnant, but it does not. Heavy women tend to have higher levels of estrogen, which can be helpful when you're trying to conceive. Thin women with PCOS tend to be poor responders to ovulation stimulators and have lower rates of success with IVF.
I researched everything I could get my hands on. I truly became an expert on PCOS. I don't mean this in a bragging way (well, maybe a little), but I honestly don't think I know another healthcare provider in real life, who knows as much about PCOS as I do, specifically "thin" PCOS. I started to devise a plan, figure out what medications where most likely to work for me, what lifestyle changes I could make to improve my chances. This really helped give me a sense of control over the situation. Instead of focusing on how disappointed I was that my fairytale plan of an easy conception was being shattered to pieces, I could focus on what I wanted to do about it. And again, I'm struck with how fortunate I was to be a position to just do it. I could do what was best for me without having to ask anyone else for approval or permission.
So I came up with a plan and that plan was metformin.
To be continued...
Wednesday, June 13, 2012
My Path to Pregnancy Part 1- The Diagnosis
My husband and I got married in March 2004. We both knew we wanted kids, but I was working full time as an RN and in school to get my Master's. Besides that, we married pretty young (24) and while I couldn't wait for the day we would be ready for kids, I knew it wasn't then. I stressed for years about when we would start trying. My husband was in no hurry. The general plan was we would try after I finished school. My sister got pregnant (unplanned) my last semester in school. I was so happy and so jealous all at the same time. I didn't want to be pregnant at the same time as her (ha, ha, ha!), and we had a few trips planned for the end of the year, so it was decided we would stop birth control shortly after that.
I took my NuvaRing out for the last time late in December 2008. I had never in my life had regular periods and spent a great deal of my late teens and early twenties thinking I was pregnant because I was late (ha, ha, ha again!). But I hadn't ever gotten pregnant and I was worried that was more than just luck. Furthermore, I am a nurse practitioner and my specialty is women's health, so I knew enough to know something wasn't right. Hindsight being 20/20 and all, it's hard for me to look back now and not think there was some serious denial going on. How could I have missed all the signs? But I digress.
So after stopping the NuvaRing, I got the obligatory withdrawal bleed (aka- period), and then I waited. And waited. And waited. By this time, being the control freak, type-A that I can sometimes be, I'm already temping, watching my cervical mucous, and googling like crazy. Finally around day 35, I ovulate. 10 days later I get my period. I know enough to know this is not good, but again, fail to see the bigger picture.
Month two I'm tired of trying to read tea leaves, so I start using OPKs. Starting around day 12 a second line shows up, but it's never as dark as or darker than the control. I read the box, I google, I see what all this can mean, but still- that can't be me. This goes on for a long time, we get to day 45 and still no sign of impending ovulation. I worked at an OB/Gyn clinic at that time, complete with my own sonographer, so I decide it's time to figure out what the hell is going on. I do blood work on a Friday afternoon- the usual hormone panel, but then decide on a whim to ask the sonographer to take a quick peek "just to rule it out".
What I got instead was confirmation of what everything else had been pointing too- PCOS. My ovaries were ridiculously full of tiny follicles. Textbook. Awesome. The real kicker is, I did a huge paper on PCOS for grad school. I even taught a lecture on it. I remember thinking often "huh, that sounds familiar", but it NEVER dawned on me that I could have it. I cried off and on all weekend. But I also immediately went to work reading everything I could get my hands on about PCOS. Mind you- at this point I didn't have my hormone panels back yet. But I didn't need to. I already had two of the three criteria necessary to diagnose PCOS. My results the next week were just the nail in the coffin- textbook PCOS.
I haven't thought about all this in such detail in a long time. It brings up a lot of feelings I had mostly forgotten. One new feeling, though, is gratitude. In looking back I realize how incredibly lucky I was to have access to all the resources I needed to figure out what was wrong with me so quickly and inexpensively. Who knows how much longer (if ever) it might have taken me to get pregnant if my circumstances were different?
To be continued....
I took my NuvaRing out for the last time late in December 2008. I had never in my life had regular periods and spent a great deal of my late teens and early twenties thinking I was pregnant because I was late (ha, ha, ha again!). But I hadn't ever gotten pregnant and I was worried that was more than just luck. Furthermore, I am a nurse practitioner and my specialty is women's health, so I knew enough to know something wasn't right. Hindsight being 20/20 and all, it's hard for me to look back now and not think there was some serious denial going on. How could I have missed all the signs? But I digress.
So after stopping the NuvaRing, I got the obligatory withdrawal bleed (aka- period), and then I waited. And waited. And waited. By this time, being the control freak, type-A that I can sometimes be, I'm already temping, watching my cervical mucous, and googling like crazy. Finally around day 35, I ovulate. 10 days later I get my period. I know enough to know this is not good, but again, fail to see the bigger picture.
Month two I'm tired of trying to read tea leaves, so I start using OPKs. Starting around day 12 a second line shows up, but it's never as dark as or darker than the control. I read the box, I google, I see what all this can mean, but still- that can't be me. This goes on for a long time, we get to day 45 and still no sign of impending ovulation. I worked at an OB/Gyn clinic at that time, complete with my own sonographer, so I decide it's time to figure out what the hell is going on. I do blood work on a Friday afternoon- the usual hormone panel, but then decide on a whim to ask the sonographer to take a quick peek "just to rule it out".
What I got instead was confirmation of what everything else had been pointing too- PCOS. My ovaries were ridiculously full of tiny follicles. Textbook. Awesome. The real kicker is, I did a huge paper on PCOS for grad school. I even taught a lecture on it. I remember thinking often "huh, that sounds familiar", but it NEVER dawned on me that I could have it. I cried off and on all weekend. But I also immediately went to work reading everything I could get my hands on about PCOS. Mind you- at this point I didn't have my hormone panels back yet. But I didn't need to. I already had two of the three criteria necessary to diagnose PCOS. My results the next week were just the nail in the coffin- textbook PCOS.
I haven't thought about all this in such detail in a long time. It brings up a lot of feelings I had mostly forgotten. One new feeling, though, is gratitude. In looking back I realize how incredibly lucky I was to have access to all the resources I needed to figure out what was wrong with me so quickly and inexpensively. Who knows how much longer (if ever) it might have taken me to get pregnant if my circumstances were different?
To be continued....
Monday, June 11, 2012
What's in a name?
I want to explain the meaning behind my blog name. As I've mentioned before, I've been reading IF blogs for a few years and I realized this topic has been discussed many, many times before. I doubt I have anything new or original to add to the conversation, just my perspective of how I see myself.
I am an AA baby. That is, I was raised by a father and later step-mother who are in Alcoholics Anonymous. People in AA will never refer to themselves as a former alcoholic, if they're staying sober, they consider themselves recovering alcoholics. The theory goes that you either are an alcoholic or you're not, and if you are, you always are, even if you're not drinking. So, I'm sure the analogy is pretty obvious.
I am infertile. I will always have PCOS, I will always consider myself infertile even though I've gotten pregnant and had a child. This has not cured my infertility and likely if I choose to have try for another baby, I'll be right back in the throes of infertility again. But, I cannot deny the fact that I'm not in the same place that I was before I had my daughter. So this is how I define my gray area. I am a recovering infertile. I'm not currently living the life of tests and treatments and I have a child, but it is still part of who I am.
I am an AA baby. That is, I was raised by a father and later step-mother who are in Alcoholics Anonymous. People in AA will never refer to themselves as a former alcoholic, if they're staying sober, they consider themselves recovering alcoholics. The theory goes that you either are an alcoholic or you're not, and if you are, you always are, even if you're not drinking. So, I'm sure the analogy is pretty obvious.
I am infertile. I will always have PCOS, I will always consider myself infertile even though I've gotten pregnant and had a child. This has not cured my infertility and likely if I choose to have try for another baby, I'll be right back in the throes of infertility again. But, I cannot deny the fact that I'm not in the same place that I was before I had my daughter. So this is how I define my gray area. I am a recovering infertile. I'm not currently living the life of tests and treatments and I have a child, but it is still part of who I am.
Wednesday, June 6, 2012
Why am I here?
I don't mean this in the existential, meaning of life kind of way, although that would be nice to know... Rather why am I starting this blog at this time.
Before I started trying to get pregnant, I was never a blog reader. There were a few blogs of friends that I followed here and there, but I really wasn't a part of the blogging world. I had always thought that when I got pregnant I would start a blog to track my pregnancy, birth, baby, etc. I thought it would be a great way to save my memories and also allow my friends and family to keep up with what was going on with us. I did start a journal as soon as stopped birth control which is where I recorded my private feelings. Several months into trying to get pregnant, and no closer to actually being pregnant, my sister told me about a blog called A Little Pregnant. I checked it out the same way I would come to read all blogs- starting at the beginning and reading all the way through the archives. By the time I finished it, I was hooked.
There was someone else out there who understood what I was going through and how I felt! It was like she could read my thoughts. From there I followed the links to blogs that she read and so on. But that was the extent of my activity. I would devour infertility blogs, but I never commented or had any actual contact with these bloggers. And I didn't start my own blog because I had it in my head that my blog would be for when I actually got pregnant.
And so it was. As soon as I had my first sono where we saw a heartbeat, I started my baby blog. It's boring, it's impersonal, but it's exactly what I thought it would be. I still continue to follow all the same blogs and many new ones as well- mostly PAIL blogs. I am still much more of an observer than a participator. Every once in a while I'll leave a comment here and there, but I don't actually "know" any of the bloggers I follow, not even in a internets/bloggy/cyber friend kind of way.
So, back to why I'm starting this blog. I regret not blogging when I was struggling to get pregnant. I felt and feel a great sense of community with all of these fellow infertiles, but it's like having a crush on a celebrity or something- I know so many details about them and their lives, but they don't even know I exist. For a long time that's been fine, but I find myself wanting that connection now. I also know I still have a lot to work through regarding my journey to parenthood, especially as I'm beginning to think about doing it all over again.
Before I started trying to get pregnant, I was never a blog reader. There were a few blogs of friends that I followed here and there, but I really wasn't a part of the blogging world. I had always thought that when I got pregnant I would start a blog to track my pregnancy, birth, baby, etc. I thought it would be a great way to save my memories and also allow my friends and family to keep up with what was going on with us. I did start a journal as soon as stopped birth control which is where I recorded my private feelings. Several months into trying to get pregnant, and no closer to actually being pregnant, my sister told me about a blog called A Little Pregnant. I checked it out the same way I would come to read all blogs- starting at the beginning and reading all the way through the archives. By the time I finished it, I was hooked.
There was someone else out there who understood what I was going through and how I felt! It was like she could read my thoughts. From there I followed the links to blogs that she read and so on. But that was the extent of my activity. I would devour infertility blogs, but I never commented or had any actual contact with these bloggers. And I didn't start my own blog because I had it in my head that my blog would be for when I actually got pregnant.
And so it was. As soon as I had my first sono where we saw a heartbeat, I started my baby blog. It's boring, it's impersonal, but it's exactly what I thought it would be. I still continue to follow all the same blogs and many new ones as well- mostly PAIL blogs. I am still much more of an observer than a participator. Every once in a while I'll leave a comment here and there, but I don't actually "know" any of the bloggers I follow, not even in a internets/bloggy/cyber friend kind of way.
So, back to why I'm starting this blog. I regret not blogging when I was struggling to get pregnant. I felt and feel a great sense of community with all of these fellow infertiles, but it's like having a crush on a celebrity or something- I know so many details about them and their lives, but they don't even know I exist. For a long time that's been fine, but I find myself wanting that connection now. I also know I still have a lot to work through regarding my journey to parenthood, especially as I'm beginning to think about doing it all over again.
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