I'm not sure if this actually counts as a myth. I haven't heard people spewing it at me like I've heard lots of other myths since I "became" infertile, but it's one that I thought was true. My parents instilled a great faith in me of the medical community. So when it first occurred to me that my lack of periods could mean something bigger on the baby making front, I just assumed that doctors and science would help point me in the right direction. Well, I guess they did, but it certainly didn't happen the way I expected and I have learned along the way that I probably know more about infertility then most of my doctors have. So I'd like to share my experiences that busted this myth for me.
My Infertility Myth: The medical community as a whole has an understanding of infertility
Now, when I say "has an understanding" I don't mean that the medical community as a whole should know how to diagnose me or treat me. What I would expect from them is to know what throws up a red flag as a possible infertility problem, when they're out of their realm of experience so that they can send me to a specialist, and to know how to be thoughtful about the emotional side of my condition. Here's what I will try to make the short version of how I lost faith in my doctors.
- I was 17 years old before I got my first period and I never got them regularly after that. As an adult I say, yikes, something is seriously wrong here, but the teenager in me certainly didn't mind not having to deal with periods. It wasn't until I was in college and my periods were really painful that I went to an OBGYN. After describing my situation to her, she put me on birth control pills to regulate my periods and that was that. No concern about why this was happening or what it might mean for my health and reproductive abilities in the future. Just a nice quick fix. I didn't know enough to ask for any more.
- Fast forward almost ten years. I was about to get married and went to my GP at the time for another reason. While I was there I discussed my concerns about possible fertility problems with her, and she told me not to worry, that a lot of people just need to get regulated and that most likely when I stopped birth control, my periods would be normal. Sounded good to me.
- 3 months later I had been off birth control and slowly my cycles were stretching out. I used fertility monitors and charted my temperatures. To me it appeared that I wasn't ovulating, so I went to my new GP. I explained all my symptoms to her (irregular/heavy/painful periods, some acne, loss of hair, headaches, etc) and she told me that it can take a little while to get used to being off the pill. She pulled on my hair and when none came out she said she thought everything was normal but if I was concerned to go see my OBGYN.
- Having no OBGYN in our new city I tried to get in to one recommended to me but there was a long wait, so instead I saw the nurse practitioner at another office. I gave her my symptoms and she ran a bunch of tests to see if I had PCOS (Polycystic Ovarian Syndrome) but because I didn't report a large amount of dark hair on my body, she chose not to test my testosterone level. Everything came back normal and she decided to try her hand at Clomid. I did one round at 50 mg, went in for one ultrasound and they didn't see anything. That coupled with my husbands irregular semen analysis and my age (which she had recorded as 10 years older then I actually was) lead her to refer me to an RE (Reproductive Endocrinologist).
- Also, the ultrasound I had in the OBGYN's office was an internal ultrasound. Nobody prepared me for this. It never occurred to the NP that maybe this whole process was overwhelming, scary, and invasive. So I went to the office with my hubby in tow (it'll be fun, it's an ultrasound!) only to be put in the stirrups and wanded. Totally traumatized.
- Finally at the RE's office, I was in good hands. She tested everything, found an elevated testosterone level and diagnosed me with PCOS 7 months after my first doctor visit with the GP. She scoffed at my OBGYN's attempts with clomid. She did it right and got us pregnant. Then we miscarried and hit some missteps there as well. The nurse practitioner in the office at the time had no emotional compass for what her patients might be feeling. The whole time I was sitting in her office, bleeding profusely, she was rather dismissive, telling me that she knew this must be "scary" and that they'd see what they could find out. I remember sitting there, totally numb, while they tried over and over to get blood to check my beta levels. I think they finally had to run a line into my wrist. Once it was confirmed, my doctor was worried it could be ectopic. So she told me that if I had severe pain to call her or go to the ER as it could be a rupture and they'd do another ultrasound in a few days. Well, she neglected to tell me that I could have the equivalent of labor pains with the miscarriage. So I ended up in the ER for no reason with what I now know were labor pains as my pregnancy ended naturally.
There are more and more tiny examples that I can share (and I'm sure many, many more that the infertility community as a whole could share). The feeling that my RE's office was a bit overwhelmed by the volume of patients that they had. A lack of feeling like my doctor really remembered or knew me. The fact that I would wait months for an appointment and then it felt like the doctor wasn't totally prepared for it. It's hard for me to say too many negative things about my RE at this point though, because I have a beautiful baby girl thanks to her.
What started making the visits to that office, and all the others easier was my realization that I needed to be as educated as I possibly could. I got copies of everything, asked questions of everyone, read everything I possibly could, and pushed my doctors when I felt like they weren't advocating for me. So to me, when I read about advocacy for infertility, it means more then just trying to make a change in laws, taxes, and insurance. It means making a change in the way we interact with the medical community. It took 7 months and 3 doctors (or 8 years and 4 doctors depending on when you start counting) to figure out I have PCOS which is an incredibly common condition (and I know that there are many women who have much worse stories then mine). They lacked knowledge, they lacked compassion, and they lacked urgency. If I was a patient with a life threatening illness, I could sue them. But since my condition "just" makes me infertile, all I can do is curse the time I lost and learn for the future. Because unfortunately, it doesn't seem like the medical community really knows as much as they should about us or takes us as seriously as we should be taken. That belief that I had, the trust that I had in them when I started, is busted.
For more information on infertility: http://www.resolve.org/infertility101
For more information on National Infertility Awareness Week: http://www.resolve.org/takecharge