Polycystic Ovary Syndrome
This is the blog post that I have wanted to write for several months. Since the end of August, in fact. I have delayed and hesitated and drafted then discarded and doubted and planned and drafted and discarded so many times that I find myself wondering why I didn't just get it done with.
The quick answer to that last bit is that I was hoping for the last piece of the puzzle to show up and fit in the right place so I could put it together. But recent events have made me realise that I shouldn't have doubted and struggled with this post; that I should have just written it.
First some background. This is mostly going to be information that close family and friends already know but I want to share it for the benefit of those who may be visiting this blog for the first time, or just stumbled upon it while searching for information.
Gretch and I got married in 2008. This was right after I had graduated, but about a year before she did. For the first year of our marriage, we did not try to conceive a child because we wanted to make sure Gretch was able to finish school. We were also hoping that it would give us time to become financially prepared to have a child. So this story, and the purpose of this post, really starts in 2010.
After several months of trying, Gretch got pregnant. We were ecstatic and nervous and happy and worried and all of those things that I imagine new expecting couples experience. For Christmas the previous year, her siblings gave her a copy of What to Expect When You're Expecting as a gag gift. But we were grateful to have it and we read it regularly. We told our family and close friends, and we scheduled our first appointment with a doctor at our clinic. (Our primary care physician, Dawn McCoy, doesn't do obstetrics, but we wanted to stay at the clinic, so we were recommended to another doctor in the family medicine department, Jane Kim, whose specialty is adult medicine, women's medicine, and obstetrics.) The appointment was scheduled to take place at approximately the 8-week mark of the pregnancy.
Two years ago, almost to the day (a week before Mothers' Day), we experienced our first tragedy as a young couple: Gretch miscarried. She had been spotting for a few days but, feeling that was normal, we didn't do much about it. Then the spotting got worse and she told her mom, who said that that didn't sound normal and we should see a doctor. Then the pain started. To call it crippling would be fairly accurate. We called the doctor and they directed us to go to the Emergency Room. We got there and waited and waited and waited. Then they brought Gretch in and did an emergency ultrasound. What should have been a wonderful experience for us became the exact opposite. They informed us that she was "threatening miscarriage" and gave us some fairly detailed instructions on what to do. This was approximately five weeks into the pregnancy, as best as we could tell.
The miscarriage (or what we learned is called in the medical community a "spontaneous abortion") took place, and there was grief and tears and sorrow. And anger. How could God, or nature, or whatever take a woman's first child a week before Mothers' Day of all days? We got through the pain and the sorrow and, after talking on the phone with our not-yet-seen-OB's nurse, decided to go in for the appointment we'd had scheduled to discuss what had happened and what we should do next. Dr. Kim confirmed to us what we had heard from many other people: doctors estimate that nearly one in every four pregnancies end in miscarriages, and many women who miscarry go on to have no complications with future pregnancies. She advised us to wait for three months before attempting to conceive in order to give Gretch's body time to heal and fully recover from the experience.
Around this same time, we turned to the Internet and to What to Expect to learn more about miscarriages. This is a character trait that Gretch and I share; whenever we experience something new, whether good or bad, we turn to what has been written before to get as much information as we can to better understand what is going on.
We waited and then after three months, we began trying to conceive again. We were elated Gretch quickly got pregnant and, knowing that the doctor would not want to see her until the 8-week mark, we waited until six weeks had passed. This was also just passed the point of her first miscarriage, and so we made the call and set up the appointment. Oddly enough, we ended up telling a few friends at a summer camp we were working at about the pregnancy because Gretch had been slightly cramping and we had to explain to those running the camp why she was not able to do all of the tasks she had volunteered to do.
A week later, tragedy struck again. Gretch started spotting and then bleeding heavily, and the cramps came on. We both knew what was happening but hoped and prayed it would stop. It didn't. We didn't even have to visit the doctor this time. We knew what had happened, and we knew that there was nothing we or the doctors could do to prevent. A miscarriage in the first trimester is just too early to stop. There was not anger this time, just grief and disappointment. I remember being terrified that it was my fault. You see, Gretch and I had been running a custodial cleaning company at the time and occasionally went in to work with our employees or to clean some offices so the employees wouldn't have to be out so late. Just a few days before the miscarriage started, Gretch had helped me clean an office and had done a lot of vacuuming. I was filled with anger at myself for asking her to do that for me; what if the stress on her body had been too much?
Once again, we went in to visit our doctor after the loss. Once again, we talked about health and healing. Our wonderful doctor comforted us and counseled us. She felt that Gretch's body just wasn't ready yet, that it had been too soon. Dr. Kim wanted us to wait for a full six months before attempting to conceive again. At this point, she still felt that there was a strong likelihood that Gretch could carry a baby to full term. We called our parents and told them what had happened and what the doctor had counseled. They lovingly encouraged us and supported us in our struggles. Our best friends were also told and they, too, comforted us in a way that made us truly grateful for our loved ones.
Over the next six months, we waited and counted the days until we could try to conceive again. We also experienced some major changes in our lives. Gretch had started a new job, we had closed our business and I was anxiously searching for full-time teaching positions. We were planning on having a child in our home within the next 18 months, and we wanted to be ready. July and August 2011 were roller coaster weeks for us. I had a flurry of job interviews all around Illinois, I got hired at my current job two weeks before school started, and Gretch had her third confirmed pregnancy. We waited and after a full six weeks passed, we called the doctor's office, again. We scheduled an appointment and went in to see her.
We were thrilled! For the first time, we were seeing our doctor when Gretch was pregnant. We talked, we planned, and we received vast quantities of literature about our clinic's obstretrics and neo-natal departments. We were thrilled. The doctor gave Gretch a physical and when she attempted to hear the baby's heartbeat, we knew there was something wrong. She decided to do an ultrasound and was worried when there was no visible heartbeat. But she also thought that maybe Gretch was just not as far along as we'd thought. We scheduled a nurse consult for the following week, which happened to be the first day of school for my students. Gretch went on her own so that I could be there with my class.
I wish I had arranged with my principal to be gone that afternoon so that I could have gone with her. What Gretch learned was devastating. There was no heartbeat and the nurse who saw her told her that she would most likely experience a miscarriage because the fetus was not growing. What we learned several weeks later was that the nurse did not express herself well, or Gretch did not hear her correctly. We kept our hopes up that we would somehow experience a miracle and that the baby would start growing. Doctors make mistakes, and it would certainly not have been the first time that someone was told that they were miscarrying only to go on and have a healthy baby born at full-term.
Alas, it was not to be. Gretch miscarried for the third time in two years and our doctor immediately realised that this was not a normal problem. She helped arrange a visit with the clinic's reproductive medicine specialist, Nancy Fay, who we learned has worked with several friends of ours in the past. This doctor usually has such a busy schedule that she is not able to see a new patient for months. We got in to see her within a week. This turned out to be the turning point of a very disappointing journey.
Our new doctor spoke with us at great length and asked about our own and our family's medical backgrounds. She told us about the most common reasons for repeated miscarriages and promised that she would be with us until we figured out what was going on. I was immediately struck by her compassion and her dedication to her work and felt that we were exactly where we needed to be at that time. Then we met with her nurse, who asked many of the same questions and talked about different treatment plans. And blood work. My goodness, I never knew that there were so many tests that one person could have done on their blood! We agreed to do whatever was necessary. Blood was collected, tissue samples were collected and delivered to the clinic's laboratory, and the regular visits with the doctor and her nurses began.
Somewhere in the midst of those early visits, we first heard about Polycystic Ovary Syndrome, or PCOS. Gretch was asked if she had any family history of PCOS, and the initial response was negative. Neither one of us had heard of it before. We later learned, somehow or another, that there is a family history of this syndrome and we called the nurse and let her know. But we didn't hear anything back about that.
So many tests! So many concerns! Gretch was diagnosed with Sub-Clinical Hypothyroidism, which is a genetic disorder that, for most people, is not a problem. Not a problem, at least, unless they are trying to conceive. She was prescribed levothyroxin and began taking a very low dosage of the medicine every morning. One blood test indicated the possibility of an auto-immune disease, and so we went to the endocrinologist to have him look at her blood results. Whatever the disease was, Gretch didn't have it. But the doctor suggested that Gretch be tested for PCOS, because, to his knowledge, that seemed to be the most likely culprit. This was the first time we had heard anything further about this since that first appointment in August.
An endometrial polyp had been discovered and an outpatient surgery was scheduled so that Gretch could have a hysteroscopy to remove it from the uterine wall. This was in December. During the pre-surgery visit with Dr. Fay, I asked about PCOS, explaining that the endocrinologist had brought it up. She was looking at Gretch's patient notes and said something along the lines of, "Wait, no one has talked to you about this?" It turns out that it had been in the notes from almost the first visit but, in the midst of the shuffling of papers and blood tests and everything, it was forgotten. This made us realise that we should always ask if there are any notes we need to know about!
Because of the polyp, Dr. Fay decided to wait until after the surgery to start Gretch on treatment for PCOS. She did give us some background information, but felt that we needed to tackle one thing at a time. The surgery was on December 30. It took several hours, but there was nothing unusual. Dr. Fay performed the surgery and spoke with me while Gretch was in recovery. Then I was able to sit with Gretch until they felt she was ready to go home. I must say, that evening was very interesting indeed. Suffice it to say that Gretch says the strangest things when she is heavily medicated.
Two weeks after the surgery, we met with Dr. Fay again. We were told that there was nothing to worry about the polyp, and she was ready to start Gretch on treatment for PCOS. She gave us more information about it but, honestly, we had done so much research on it already that we felt quite secure in our understanding of the syndrome and what all it does. Polycystic Ovary Syndrome is a genetic disorder, very, very common in women, which is principally detected by the imbalance of several hormones, especially insulin, androgens (like testosterone and androstenedione), and progesterone. Some of the side effects of PCOS are cysts on the ovaries (hence the name), excessive weight gain, hairiness (like a man), or "dirty" looking skin on joint creases like the neck or elbows. The most common treatment for PCOS is a daily dosage of metformin that varies in size. Some people take metformin all at once. Gretch initially found that spacing it to coincide with meals worked better, but has recently switched to taking it all at once in the morning.
One of the most common side effects of metformin is nausea but we were told that, for reasons not quite understood, a low-carb diet helps off-set the side effects. We were also told that the metformin would help with weight loss, so the combination of a low-carb diet, exercise, and the medication would help Gretch lose weight, which is something with which she has struggled for a very long time.
The past several months have been filled with adventures in finding new foods to eat that didn't include our previous staples of rice or noodles. We have also been trying to exercise regularly. I wake Gretch up at 7:00 each morning to take her levothyroxin and then, 30 minutes later, she eats and takes her metformin. She has experienced changes in taste and appetite, but we roll with the variations and I eat the leftovers. Gretch has also been losing weight, which has been a side blessing along our path.
After three months of metformin, we were told that the last test would be to measure Gretch's progesterone levels after ovulation. All other blood tests were coming up normal, which was fantastic news! We learned about measure basal body temperature, which has just become another routine in the morning. We tracked the temperatures, looked for the spike, and called to schedule the latest in a long line of blood tests.
Last week we had our appointment and the results were mixed. We met with Dr. Fay's nurse who told us that the blood work was anovulatory. This meant one of two things: either Gretch did not ovulate, in which case there are other steps to be taken, or her progesterone is not being produced in ample quantities to support ovulation, in which case other steps can be taken. We are still working closely with our doctors to monitor Gretch's health, hormone levels, thyroid levels, and basal body temperature so that we can continue to move toward a successful full-term pregnancy.
So, are we going to keep everyone posted on our attempts to conceive? No, no we will not. We probably won't even tell anyone about a pregnancy until we are into the second trimester. (No, Gretch is not pregnant now, either.)
One last thing in this very long post. There is a reason I felt that I really just needed to get out and write this down. I mentioned earlier that PCOS is very common among women. Gretch and I have learned that many of our friends and family have experiences with this, but many people are reluctant to talk about it. After all, reproductive health is a very personal matter. But we wanted to share our experiences with those who may be struggling to conceive. Maybe others will ask their doctors about PCOS. Or maybe they know they have it and will just be glad to know they are not alone. Gretch and I are both happy to talk to anyone who has questions about it. We can share medical resources, recipes, and ideas on what has worked for us.
The quick answer to that last bit is that I was hoping for the last piece of the puzzle to show up and fit in the right place so I could put it together. But recent events have made me realise that I shouldn't have doubted and struggled with this post; that I should have just written it.
First some background. This is mostly going to be information that close family and friends already know but I want to share it for the benefit of those who may be visiting this blog for the first time, or just stumbled upon it while searching for information.
Gretch and I got married in 2008. This was right after I had graduated, but about a year before she did. For the first year of our marriage, we did not try to conceive a child because we wanted to make sure Gretch was able to finish school. We were also hoping that it would give us time to become financially prepared to have a child. So this story, and the purpose of this post, really starts in 2010.
After several months of trying, Gretch got pregnant. We were ecstatic and nervous and happy and worried and all of those things that I imagine new expecting couples experience. For Christmas the previous year, her siblings gave her a copy of What to Expect When You're Expecting as a gag gift. But we were grateful to have it and we read it regularly. We told our family and close friends, and we scheduled our first appointment with a doctor at our clinic. (Our primary care physician, Dawn McCoy, doesn't do obstetrics, but we wanted to stay at the clinic, so we were recommended to another doctor in the family medicine department, Jane Kim, whose specialty is adult medicine, women's medicine, and obstetrics.) The appointment was scheduled to take place at approximately the 8-week mark of the pregnancy.
Two years ago, almost to the day (a week before Mothers' Day), we experienced our first tragedy as a young couple: Gretch miscarried. She had been spotting for a few days but, feeling that was normal, we didn't do much about it. Then the spotting got worse and she told her mom, who said that that didn't sound normal and we should see a doctor. Then the pain started. To call it crippling would be fairly accurate. We called the doctor and they directed us to go to the Emergency Room. We got there and waited and waited and waited. Then they brought Gretch in and did an emergency ultrasound. What should have been a wonderful experience for us became the exact opposite. They informed us that she was "threatening miscarriage" and gave us some fairly detailed instructions on what to do. This was approximately five weeks into the pregnancy, as best as we could tell.
The miscarriage (or what we learned is called in the medical community a "spontaneous abortion") took place, and there was grief and tears and sorrow. And anger. How could God, or nature, or whatever take a woman's first child a week before Mothers' Day of all days? We got through the pain and the sorrow and, after talking on the phone with our not-yet-seen-OB's nurse, decided to go in for the appointment we'd had scheduled to discuss what had happened and what we should do next. Dr. Kim confirmed to us what we had heard from many other people: doctors estimate that nearly one in every four pregnancies end in miscarriages, and many women who miscarry go on to have no complications with future pregnancies. She advised us to wait for three months before attempting to conceive in order to give Gretch's body time to heal and fully recover from the experience.
Around this same time, we turned to the Internet and to What to Expect to learn more about miscarriages. This is a character trait that Gretch and I share; whenever we experience something new, whether good or bad, we turn to what has been written before to get as much information as we can to better understand what is going on.
We waited and then after three months, we began trying to conceive again. We were elated Gretch quickly got pregnant and, knowing that the doctor would not want to see her until the 8-week mark, we waited until six weeks had passed. This was also just passed the point of her first miscarriage, and so we made the call and set up the appointment. Oddly enough, we ended up telling a few friends at a summer camp we were working at about the pregnancy because Gretch had been slightly cramping and we had to explain to those running the camp why she was not able to do all of the tasks she had volunteered to do.
A week later, tragedy struck again. Gretch started spotting and then bleeding heavily, and the cramps came on. We both knew what was happening but hoped and prayed it would stop. It didn't. We didn't even have to visit the doctor this time. We knew what had happened, and we knew that there was nothing we or the doctors could do to prevent. A miscarriage in the first trimester is just too early to stop. There was not anger this time, just grief and disappointment. I remember being terrified that it was my fault. You see, Gretch and I had been running a custodial cleaning company at the time and occasionally went in to work with our employees or to clean some offices so the employees wouldn't have to be out so late. Just a few days before the miscarriage started, Gretch had helped me clean an office and had done a lot of vacuuming. I was filled with anger at myself for asking her to do that for me; what if the stress on her body had been too much?
Once again, we went in to visit our doctor after the loss. Once again, we talked about health and healing. Our wonderful doctor comforted us and counseled us. She felt that Gretch's body just wasn't ready yet, that it had been too soon. Dr. Kim wanted us to wait for a full six months before attempting to conceive again. At this point, she still felt that there was a strong likelihood that Gretch could carry a baby to full term. We called our parents and told them what had happened and what the doctor had counseled. They lovingly encouraged us and supported us in our struggles. Our best friends were also told and they, too, comforted us in a way that made us truly grateful for our loved ones.
Over the next six months, we waited and counted the days until we could try to conceive again. We also experienced some major changes in our lives. Gretch had started a new job, we had closed our business and I was anxiously searching for full-time teaching positions. We were planning on having a child in our home within the next 18 months, and we wanted to be ready. July and August 2011 were roller coaster weeks for us. I had a flurry of job interviews all around Illinois, I got hired at my current job two weeks before school started, and Gretch had her third confirmed pregnancy. We waited and after a full six weeks passed, we called the doctor's office, again. We scheduled an appointment and went in to see her.
We were thrilled! For the first time, we were seeing our doctor when Gretch was pregnant. We talked, we planned, and we received vast quantities of literature about our clinic's obstretrics and neo-natal departments. We were thrilled. The doctor gave Gretch a physical and when she attempted to hear the baby's heartbeat, we knew there was something wrong. She decided to do an ultrasound and was worried when there was no visible heartbeat. But she also thought that maybe Gretch was just not as far along as we'd thought. We scheduled a nurse consult for the following week, which happened to be the first day of school for my students. Gretch went on her own so that I could be there with my class.
I wish I had arranged with my principal to be gone that afternoon so that I could have gone with her. What Gretch learned was devastating. There was no heartbeat and the nurse who saw her told her that she would most likely experience a miscarriage because the fetus was not growing. What we learned several weeks later was that the nurse did not express herself well, or Gretch did not hear her correctly. We kept our hopes up that we would somehow experience a miracle and that the baby would start growing. Doctors make mistakes, and it would certainly not have been the first time that someone was told that they were miscarrying only to go on and have a healthy baby born at full-term.
Alas, it was not to be. Gretch miscarried for the third time in two years and our doctor immediately realised that this was not a normal problem. She helped arrange a visit with the clinic's reproductive medicine specialist, Nancy Fay, who we learned has worked with several friends of ours in the past. This doctor usually has such a busy schedule that she is not able to see a new patient for months. We got in to see her within a week. This turned out to be the turning point of a very disappointing journey.
Our new doctor spoke with us at great length and asked about our own and our family's medical backgrounds. She told us about the most common reasons for repeated miscarriages and promised that she would be with us until we figured out what was going on. I was immediately struck by her compassion and her dedication to her work and felt that we were exactly where we needed to be at that time. Then we met with her nurse, who asked many of the same questions and talked about different treatment plans. And blood work. My goodness, I never knew that there were so many tests that one person could have done on their blood! We agreed to do whatever was necessary. Blood was collected, tissue samples were collected and delivered to the clinic's laboratory, and the regular visits with the doctor and her nurses began.
Somewhere in the midst of those early visits, we first heard about Polycystic Ovary Syndrome, or PCOS. Gretch was asked if she had any family history of PCOS, and the initial response was negative. Neither one of us had heard of it before. We later learned, somehow or another, that there is a family history of this syndrome and we called the nurse and let her know. But we didn't hear anything back about that.
So many tests! So many concerns! Gretch was diagnosed with Sub-Clinical Hypothyroidism, which is a genetic disorder that, for most people, is not a problem. Not a problem, at least, unless they are trying to conceive. She was prescribed levothyroxin and began taking a very low dosage of the medicine every morning. One blood test indicated the possibility of an auto-immune disease, and so we went to the endocrinologist to have him look at her blood results. Whatever the disease was, Gretch didn't have it. But the doctor suggested that Gretch be tested for PCOS, because, to his knowledge, that seemed to be the most likely culprit. This was the first time we had heard anything further about this since that first appointment in August.
An endometrial polyp had been discovered and an outpatient surgery was scheduled so that Gretch could have a hysteroscopy to remove it from the uterine wall. This was in December. During the pre-surgery visit with Dr. Fay, I asked about PCOS, explaining that the endocrinologist had brought it up. She was looking at Gretch's patient notes and said something along the lines of, "Wait, no one has talked to you about this?" It turns out that it had been in the notes from almost the first visit but, in the midst of the shuffling of papers and blood tests and everything, it was forgotten. This made us realise that we should always ask if there are any notes we need to know about!
Because of the polyp, Dr. Fay decided to wait until after the surgery to start Gretch on treatment for PCOS. She did give us some background information, but felt that we needed to tackle one thing at a time. The surgery was on December 30. It took several hours, but there was nothing unusual. Dr. Fay performed the surgery and spoke with me while Gretch was in recovery. Then I was able to sit with Gretch until they felt she was ready to go home. I must say, that evening was very interesting indeed. Suffice it to say that Gretch says the strangest things when she is heavily medicated.
Two weeks after the surgery, we met with Dr. Fay again. We were told that there was nothing to worry about the polyp, and she was ready to start Gretch on treatment for PCOS. She gave us more information about it but, honestly, we had done so much research on it already that we felt quite secure in our understanding of the syndrome and what all it does. Polycystic Ovary Syndrome is a genetic disorder, very, very common in women, which is principally detected by the imbalance of several hormones, especially insulin, androgens (like testosterone and androstenedione), and progesterone. Some of the side effects of PCOS are cysts on the ovaries (hence the name), excessive weight gain, hairiness (like a man), or "dirty" looking skin on joint creases like the neck or elbows. The most common treatment for PCOS is a daily dosage of metformin that varies in size. Some people take metformin all at once. Gretch initially found that spacing it to coincide with meals worked better, but has recently switched to taking it all at once in the morning.
One of the most common side effects of metformin is nausea but we were told that, for reasons not quite understood, a low-carb diet helps off-set the side effects. We were also told that the metformin would help with weight loss, so the combination of a low-carb diet, exercise, and the medication would help Gretch lose weight, which is something with which she has struggled for a very long time.
The past several months have been filled with adventures in finding new foods to eat that didn't include our previous staples of rice or noodles. We have also been trying to exercise regularly. I wake Gretch up at 7:00 each morning to take her levothyroxin and then, 30 minutes later, she eats and takes her metformin. She has experienced changes in taste and appetite, but we roll with the variations and I eat the leftovers. Gretch has also been losing weight, which has been a side blessing along our path.
After three months of metformin, we were told that the last test would be to measure Gretch's progesterone levels after ovulation. All other blood tests were coming up normal, which was fantastic news! We learned about measure basal body temperature, which has just become another routine in the morning. We tracked the temperatures, looked for the spike, and called to schedule the latest in a long line of blood tests.
Last week we had our appointment and the results were mixed. We met with Dr. Fay's nurse who told us that the blood work was anovulatory. This meant one of two things: either Gretch did not ovulate, in which case there are other steps to be taken, or her progesterone is not being produced in ample quantities to support ovulation, in which case other steps can be taken. We are still working closely with our doctors to monitor Gretch's health, hormone levels, thyroid levels, and basal body temperature so that we can continue to move toward a successful full-term pregnancy.
So, are we going to keep everyone posted on our attempts to conceive? No, no we will not. We probably won't even tell anyone about a pregnancy until we are into the second trimester. (No, Gretch is not pregnant now, either.)
One last thing in this very long post. There is a reason I felt that I really just needed to get out and write this down. I mentioned earlier that PCOS is very common among women. Gretch and I have learned that many of our friends and family have experiences with this, but many people are reluctant to talk about it. After all, reproductive health is a very personal matter. But we wanted to share our experiences with those who may be struggling to conceive. Maybe others will ask their doctors about PCOS. Or maybe they know they have it and will just be glad to know they are not alone. Gretch and I are both happy to talk to anyone who has questions about it. We can share medical resources, recipes, and ideas on what has worked for us.
Comments
I'm glad you have good doctors to guide you through this mess.