Getting Medical Help

With a little research on the Internet about PCOS, I knew that the root cause of the problem is a hormonal imbalance. The hormonal imbalance is associated with insulin resistance and is often treated with a medication called metformin that is also used to treat diabetes. It scared me to think that the condition I had was closely related to diabetes and put me at an increased risk of actually developing diabetes later in life, but I could see that seeing a reproductive endocrinologist would be a better idea since I would get more comprehensive treatment and the treatment would target the root cause of the problem. So I picked an RE based on which doctors were in network for our insurance provider and based on patient reviews for some of those doctors. I called her office to ask for an appointment, fearing that I would have to wait for a while before they could get me in and that maybe I should go back to the gynaecologist to try Clomid in the meantime. I was pleasantly surprised when they told me that they had had a cancellation for the next day and I could come in then. It was an inconvenient time of day for me to be able to fit in the appointment with my work schedule, but I was anxious to get things moving and to be able to start trying to have a baby again, while knowing that I would have a reasonable probability of actually getting pregnant. So I told them that I would make it work and I took the appointment.

The RE was a petite, slim lady with a pleasant face. She seemed to be quite warm and friendly with her patients. During that first appointment, she told me that the diagnosis and treatment for female fertility related issues usually begins with checking the levels of fertility related hormones on day 3 of the menstrual cycle. I was asked to call her office when I got a period so that they could schedule those tests. Meanwhile, they ran a boat load of tests to check for genetic anomalies that are common among people of my ethnic background. If I was found to be a carrier for genetically transmitted disorders, they would also test my husband for the same genetic mutation. They also tested me for immunity to various diseases. The RE also did an ultrasound to look at my ovaries. She told me that my right ovary appeared poly cystic, but the left one seemed to be normal. But, she also told me, the appearance is not a conclusive way to determine whether or not the ovary actually is poly cystic. It is only a part of the diagnosis. Other things, such as the hormone levels she would test when I got my period and the fact that I had excess hair growth on my face contributed to the diagnosis as well.

It felt strange for me to have an ultrasound scan at that first appointment. In my mind, ultrasounds had always been associated with monitoring the growth and development of a fetus in a pregnant woman's womb. You were supposed to have those when you were pregnant, not when you wanted to be pregnant but weren't. I didn't know, at the time, that I would very soon have to get used to having a lot of ultrasounds and no baby in my womb.

The RE looked at my test results from the previous gynaecologist's office and pointed out that my thyroid stimulating hormone levels were low. That would mean that I had a hyperactive thyroid gland. She said that I should definitely see an endocrinologist, a regular endocrinologist, not a reproductive endocrinologist, about the thyroid issue. It would not be a good idea to get pregnant without getting treatment for that issue first, since it can lead to various problems with the pregnancy and the baby.

She also wanted to run some tests to make sure that I did not have problems with my liver or kidneys and that I wasn't pre-diabetic. She needed all that information before she could prescribe metformin, because if a patient has liver or kidney disease, their risk of side effects from metformin would be much higher. She said it would help regulate my cycles but that it usually took a few months to start working. That was actually okay, she pointed out, since it would probably take the same amount of time to get my thyroid gland in order. She wanted me to get a hysterosalpingogram (HSG) done as well. That, she told me, was a radiological procedure with which they can determine if my uterus is the right shape and if my fallopian tubes are both open and not blocked. And my husband would also need a sperm count check, basically for insurance purposes.

That first visit with the RE was long and she gave me a lot of information, not all of which I could absorb in one sitting. But she gave me plenty of reading material to take home with me and read at leisure. She wanted me to come back after about a month when all the test results would be in and then we could discuss the course of treatment that would be appropriate for us. Meanwhile, I was supposed to make an appointment with an endocrinologist for the thyroid anomaly.

I called the endocrinologist's office for an appointment and they couldn't book me in for almost three months. I wasn't sure if I wanted to see a different doctor, because this particular one came highly recommended. So I took the appointment anyway. I was disappointed because we could not try again to have a baby until the thyroid issue was resolved, and it could possibly be a few weeks from the time I saw the doctor and she prescribed thyroid medication for me until my thyroid levels were actually in the normal range. The RE had mentioned that it would be just fine if it took some time before I could see an endocrinologist, because the metformin also usually takes a few months to start working, but I was getting more impatient with each passing day.

So I found another endocrinologist and made an appointment with her for an earlier date. I figured I could see that one first and get a prescription for whatever was needed to stabilize my levels and then see the first one, whom I had originally wanted to see, and get her opinion too. Meanwhile the medication would start working and my levels would hopefully be somewhat stable.

I went in to the RE's office another few times over the next few weeks for blood tests and for the HSG. The HSG was uncomfortable but not particularly painful. Thankfully they did not find anything wrong with my uterus or fallopian tubes during that procedure. That kind of thing would have required a surgical procedure to correct, assuming it was something that could be corrected.

I also went in to see the endocrinologist. She did not appear to be particularly friendly or warm with patients. She asked me if I had been diagnosed with PCOS. I said yes. She said she could prescribe a certain cream or ointment for me to get rid of the excess facial hair. She did not ask if I wanted to do anything about the hair, she just said she would give me a cream for it. She said she wanted to check my progesterone levels in the first half of my menstrual cycle. She was talking about all kinds of things that were really not important at the time. I mean, I came to her for a thyroid problem. I wanted the thyroid problem resolved because I wanted to have a baby. I wanted a baby and cared about having a baby. Facial hair was the least of my concerns at the time.

Anyway, she wanted to recheck the thyroid levels and run a few other tests. I tried a few times to get her to focus on the issue at hand but eventually I just gave in. If she wanted to run a few extra tests, just let her, I thought. I had to go to the laboratory another couple of times in the next few days because there were tests that had to be done at a certain time of day and there was a test that had to be done after taking a certain medication the night before. It turned out that she had written one of the names of the tests incorrectly on the papers that she had given me. I had to run from the lab to her office and find her and have her correct it for me. That was beyond unacceptable to me. Even more so when the phlebotomist drawing my blood told me that she often did this kind of thing. I was very thankful that I had kept my appointment with the other doctor and decided that I would never go back to this one.

A few days later, I called her office to ask if the results were in. The front desk staff told me that they would check with the doctor or her medical assistant and call me back. They didn't. I called them again the next day. Still no callback. Late that evening, I was in the shower at about 10 PM and heard my phone ring. I wondered who would call me at that hour. Probably a friend or family member in a different time zone, I thought. I'll call them back once I am out of the shower, I thought.

Turned out it was the doctor calling me. She left me a voice message saying that she had been trying to reach me for days and nobody had been answering the phone. I could not believe her guts. She was calling me at an hour when patients call doctors only in an emergency. Doctors do not call patients at that hour. Certainly not under normal circumstances. And she was lying to me outright. I just could not believe it. The only good part was that this doctor was part of the same network as my RE and the other endocrinologist that I was scheduled to see, so they could see my test results in the system without this doctor's office having to send the results over to their offices.

I saw the other endocrinologist, the one whom I had originally wanted to see, after a few weeks. She was a very pleasant change from the first one. Very organized and to the point. She told me that my levels were now perfectly normal, so what I had had earlier was most likely thyroiditis or a similar infection which had disappeared on its own. Since there was nothing abnormal in the recent tests, she would just recheck my levels every four to six months and check them more frequently when I became pregnant.

I also had my follow up appointment with the RE where she told me that all of my fertility related hormone levels were normal, I had no infections in my uterus or vagina, I was not a carrier for any of the genetic disorders I had been tested for, and my insulin and blood glucose levels were also in the normal range. I showed no signs of liver or kidney disease, so she could go ahead and start me on the metformin. I was a little confused about why she wanted to give me metformin even though I had perfectly normal glucose and insulin levels. She said that with PCOS, the levels are not necessarily abnormal but we still believe that poly cystic women are insulin resistant and this medication helps regulate their female hormone levels and normalize their cycles. She talked to me about the possible side effects, which were mostly gastrointestinal problems like diarrhea and nausea. But those supposedly wore off within a few weeks of starting the medication and were minimized by starting off slowly, taking one pill a day for a week, then two pills a day for another week and then three pills a day. She said that I was "petite" and so I may not tolerate the three pills a day at all, so it would be fine if I just kept taking two a day. I had never in my life been called petite. It sounded particularly odd coming from someone who was about four inches shorter and probably forty pounds lighter than I was.

She also talked to me about clomiphene citrate, commonly referred to by its most common brand name, Clomid. This drug stimulates ovulation in women who do not always ovulate on their own. She said that in most poly cystic women, a combination of metformin and Clomid gave them about the same probability of conceiving as a normal, non poly cystic woman of the same age. That was encouraging to hear. She said that with the clomiphene, we could either try naturally or choose to have an intra-uterine insemination, or IUI. She mentioned that most people prefer to try naturally with clomiphene because it makes them feel that they are doing at least something the natural way. Initially I agreed with that idea and I told her that we'd try naturally for at least one cycle and then see how we feel about it if that first cycle didn't work.

The doctor and her nurse went over details, like ultrasound monitoring to see how my ovaries were responding to the medication. They mentioned that if we did want to do an IUI cycle, I'd need to inject myself with a trigger - a medication that is chemically similar to the luteinizing hormone that triggers ovulation in a woman's body. That would help us predict the time of ovulation within a few hours, so we could time the IUI for optimal results.

That first cycle, I was supposed to take the medication from cycle day 3 until day 7 and come in for monitoring on day 14. Clomiphene was not the most pleasant medication to take either. The good part was that my body was used to the metformin by this time and I was no longer seeing nasty side effects from it. The most unpleasant side effect of the clomiphene was hot flashes. In the middle of the night, I'd suddenly feel very hot and throw the covers off. And then, as suddenly as I'd started feeling hot, I'd feel cold. It was annoying and it disturbed my sleep frequently. Often it was hard to go back to sleep. By this time, I had come to accept the fact that I would need to take medications to help me get pregnant and that they would cause unpleasant side effects, but it would all be worth it if I got pregnant in the end.

I went in to the doctor's office for monitoring on cycle day 14. I asked the ultrasound technician what she was seeing. She said she wasn't sure, but the nurses would call me later in the day after the doctor had seen the images. It was a long day, waiting for the nurses to call me. This kind of wait would also turn out to be something I would get used to pretty soon. The call came in the late afternoon and the nurse told me that they did not see any mature follicles yet. She told me to come back in 3 days, on cycle day 17. I went. No follicle. I went again on day 21. The nurse called me and said that she was sorry, but the clomiphene did not work for me that cycle.

I could not understand what was happening. I had been on the metformin for about three months at this point. I was getting regular cycles. I thought that meant I was ovulating regularly. The doctor also thought it meant I was probably ovulating. But now, metformin and Clomid, three ultrasounds and no dominant follicle.

I had an overseas trip coming up, to attend my brother's wedding and I really wanted to be in my second trimester at the time of the trip. I had read that that would be the safest time to fly during pregnancy. But the window for me to be in my second trimester at the time of that trip was closing in on me. With this cycle gone, I had just one more attempt at it. But I still definitely wanted to be pregnant when I went. I would meet a few friends from my hometown who had had babies since I had left, and I didn't think I could face them if I was not pregnant myself.

It felt like the dream of having a baby was fast slipping out from between my fingers like the sand that you hold on to ever so tightly in your fist.

The Beginning: Trying to have a Baby

After I had lost some weight and was getting fairly regular cycles, I was reasonably confident that we could conceive a baby in a few months on our own, without any medical help. We didn't even actually think about medical help at that point. In the fall of 2010, when both of us felt ready, we started trying. I bought a few ovulation predictor kits and a few home pregnancy tests and we were ready. That first cycle, the ovulation kit gave me a positive test result on cycle day 14. That little dark line means that you are supposed to ovulate in the next 24 to 48 hours. We did our part and waited for two weeks. I did not want to take a pregnancy test too soon and be disappointed just because it was too early to get a positive result, so I waited until I was about five days late. And then I could wait no longer. Those tests all say that you're supposed to test first thing in the morning, but one afternoon I could wait no more and I just made sure it had been about four hours since I last went to the bathroom and I tested. This one was a digital test, not one where you have to squint and see if there is a second line or not. And after the two minute wait, during which I tried to distract myself by doing household chores, it read "Pregnant." Clear as day. Without a doubt. I called my husband at work and he got so excited that he wanted to call everyone he knew right away. I told him to take it easy and wait for a bit, at least until we had another positive test. I actually wanted to wait until we had at least one appointment with a doctor and heard a heartbeat on a ultrasound, but I didn't want to be a complete damper to his excitement at the time. I thought we could talk about it later when he was a little more calm.

I was still a little disbelieving but I called an OB-GYN's office and made an appointment anyway, since I figured that it is usually easier to get an appointment for a more convenient time of day if you call well in advance. I took another test about three days after the first one. Negative. Another one the next day. Negative. And the next. Negative again. I was about ten days late at this point and I remembered what my first gynaecologist said that the time period between ovulation and getting your next period is usually fairly predictable. So basically, if I was pregnant, the test should say so. If I wasn't, I should get a period about two weeks after I ovulated. And I thought I knew when I ovulated.

Meanwhile I did have some nausea and mild headaches like women sometimes do in early pregnancy. I was also more hungry than usual.

After a few days of confusion, I went in to see the OB-GYN. By the time I actually got to her office, I was bleeding. Not heavy bleeding, but definitely bright red blood. I thought I knew what that meant and didn't really need to go to the doctor, but they wanted me to come in anyway. I had to see the on-call doctor. I had a long wait before I saw her because she had to rush to a patient who was delivering a baby. So there I was, in a waiting room full of evidently pregnant women, waiting for a doctor to come in and tell me that I was not.

When she did finally come in, she did a physical exam and told me that what I was experiencing could possibly be the result of an incorrect result on the pregnancy test. That can and does happen, although false negatives are much more common than false positives. It could also be what is known in medical terms as a chemical pregnancy. I had come across that term for the first time in the few days just before this, in my attempts to search the Internet for a possible resolution to the confusing results. What that means is that the egg gets fertilized but does not implant or attach to the uterine wall properly. The pregnancy is detectable with chemical tests like urine and blood tests but does not progress to a stage where it can be detected on an ultrasound, which is when it is termed as a clinical pregnancy. Another possible explanation would be an ectopic pregnancy, which means that the embryo implants somewhere other than in the uterus, generally in a fallopian tube. That kind of pregnancy, if allowed to progress, can lead to the tube bursting since a tube obviously cannot expand like the uterus can, to fit a growing baby. That would lead to decreased fertility and can also be life threatening because there can be a lot of internal bleeding. The fourth possibility she talked about was that everything was just fine, I was still pregnant, and there was just some bleeding going on. Some women have bleeding in pregnancy for no good reason and everything turns out just fine anyway.

So she told me that they would run a blood test for the pregnancy hormone, human chorionic gonadotrophin (hCG) that day, and if it indicated that I was pregnant, they would repeat it after two days to see if the levels were going up or down. Meanwhile, I was not to do any strenuous physical activity and was to go straight to the nearest hospital if I had very heavy bleeding or significant pain. I would get a call from her office the next day with the test results.

The next day, I tried to keep myself occupied at work as I anxiously awaited the call. It came early in the day. The doctor's assistant told me that I was not pregnant. I asked her if I needed to follow up with the doctor. She said that wasn't needed unless I had unusual pain or bleeding or anything like that. I told her the bleeding was lighter than a normal period, but nothing else unusual. She said that was fine, I would probably just need to wait for two cycles to help the uterine lining develop and thicken before we tried again.

So I got home in the evening and told my husband everything that the doctor's assistant had told me. He was quite disappointed, just like I had been, not just at the fact that I wasn't pregnant, but that they wanted us to wait two whole cycles before trying again. The latter part was more distressing for him than for me. He is the kind of person who, once he puts his mind to something, just wants to get it done right away. He does not put his mind that passionately to a lot of things, but this was definitely something he wanted to achieve as soon as possible.

This was the first time we got an inkling of the fact that everything along this journey did not happen according to our plans, things sometimes just happened for unexplained reasons that we were not yet wise enough to understand. At this point the agreed upon opinion was that I had had a chemical pregnancy. Doctors said that that was fairly common and that around half of all first pregnancies turned out that way. Most of them ended before the woman even realized that she was pregnant. These usually ended because of genetic abnormalities in the embryo, so they were supposedly a good thing. At the time, I thought it was a little too much information to take in. Now it seems like a little teeny tiny bit in the grand scheme of things, after all of the information we have had to take in along the way.

If that pregnancy had worked out the way pregnancies are supposed to work out, the baby would have been due on my 29th birthday. I had been a little excited at the possibility of sharing a birthday with my child. But since the pregnancy ended at only six weeks, my birthday is now an occasion for me to reminisce and yearn.

At this point there was no reason to think that there was anything wrong with either of us that would make it difficult for us to have a baby. The medical professionals made it seem like this was just so normal and it happened to every other woman, so it was no big deal. We did our own research and we decided that we would wait one cycle instead of the suggested two and then try again. I had given up drinking coffee every morning years before, and drank it only occasionally, but I cut back even further. I had arrived at my goal weight on the Weight Watchers program but I still followed the program and attended meetings regularly to keep my weight in check. We gave up eating products containing soy, since we had read that it interferes with the reproductive hormonal balance in the body.

We did not try again the next cycle, but the cycle was still about six weeks long. I did not think too much of it at that time. The one after that, the tests predicted ovulation around day 14 again, like before. My period was late again, but this time I refrained from testing until 6 weeks, which was the point at which the first pregnancy had ended. And then I tested. Negative. No nausea or headaches this time, just some breast pain. I tested every few days and got negative result after negative result. For a while, I was holding on to hope because the tests could give false negatives, but with every subsequent test, there was less hope and more denial. I was trying to tell myself that the results were all wrong. That since it had been three, four, five weeks since I ovulated, not getting a period meant that I had to be pregnant. A few weeks in, I noticed I was feeling out of breath more easily. I had read that that was also a possible pregnancy symptom. Meanwhile, the breast pain was becoming more and more bothersome. Now, like I mentioned before, I do not like going to doctors and I hesitate to make appointments with them, but, once again, I realized that I had to.

And so, once again, I went to see the original gynaecologist, the one I had seen about a year ago, the one who had told me that the time period between ovulation and getting the next cycle was supposed to be constant. Interestingly, I got my period the day I was supposed to see her. She did a breast exam and said she could find nothing wrong, no lumps or abnormal growth or anything, so it was probably just hormonal. It would probably go away with the end of my period. I then told her about the way my cycles had been of late, and how the time from ovulation until the next period had not even been somewhat constant. She said that it meant that I was probably not ovulating when I thought I was and that my hormones levels were not where they were supposed to be. She knew, since I had told her earlier, that I had had irregularities before and that I had been overweight for many years. She also noticed that I had some excess facial hair. She said that all of these symptoms pointed to poly cystic ovarian syndrome (PCOS) and that I was the textbook picture of PCOS. This was, once again, a term I had come across only in the last few days while looking on the Internet for a way to explain everything that I was experiencing. She ran some tests to check my hormone levels and they were all normal to somewhat poly cystic, but she said that the patterns I had been seeing indicated that I was definitely not ovulating every cycle. She said she could do two things for me. One option would be to use a medication called clomiphene citrate, commonly referred to by its brand name, Clomid, to induce ovulation. The other would be to send me to a reproductive endocrinologist, a specialized OB-GYN who would be better equipped to deal with fertility related issues. She said that the choice was mine, but if we tried Clomid for three cycles and I was not pregnant by then, I would have to go to a reproductive endocrinologist at that time.

My husband and I did some research on PCOS and tried to gain a better understanding of what it really meant if someone had PCOS. I found out, among other things, that PCOS is related to weight gain, though it is not completely clear if weight gain causes PCOS or the other way round or if there is an underlying cause that leads to both of them. I did know, however, that having PCOS makes it harder to lose weight. I found out that having PCOS increases your chances of developing type II diabetes and also of developing gestational diabetes. I found out that it is often hereditary. I knew that my mother did have some irregularities with her cycles, but I also knew that she had become pregnant with me quite easily.

I had a dream around this time. I dreamt I had twin daughters, and they were the chubbiest little girls I ever saw.

I guess I was not worried about the possibility of not being able to have children. I don't know if I was in denial or was just plain optimistic. But I was worried about having a daughter or two and passing on the weight problems and the PCOS to her.

I guess I was sort of counting my chickens before they were hatched. I didn't even really know if I had PCOS yet. Maybe I did, maybe they would give me medication and get me pregnant, but all I ever had were sons. I wouldn't pass on my female hormone issues to anybody.

But one thing was certain in my mind. If I did have a daughter (I hoped I would) then I would definitely educate her on healthy eating and weight issues early on in life. So that she would be in a better position to take care of her own health than I ever was.