Monday, July 23, 2012

Navigating and Surviving Infertility #2

Navigating the land of if by Melissa Ford // Taking charge of your fertility by Toni Weschler // Making babies by Sami S. David // If at first you don't conceive by William Schoolcraft
Silent sorority by Pamela Tsigdinos; Budgeting for infertility by Sterling and Best-boss;  Empty womb, aching heart by Marlo Schalesky; The infertility cure by Randine Lewis
I might be stating the obvious here but knowledge is power when it comes to dealing with infertility. Although online forums can be useful, they're also jammed full of opinions and inaccurate information. Above are some books I've found incredibly helpful and informative but however you choose to learn about infertility, there are some compelling reason why ignorance is not bliss:

1) Dealing with your doctor-  When you visit your OBGYN/Reproductive Endocrinologist/GP or whomever you might be seeing depending on where you are on your infertility journey, your doctor will start using terms to describe everything from hormone levels to possible tests to medications and procedures and unless you've prepared yourself with some baseline knowledge about how your body functions, the terminology and vast array of tests and treatment options will leave you frustrated and confused. Chances are, you'll probably end up frustrated and confused regardless, but at least it won't be from lack of knowledge or understanding of medical terms, it will simply be because infertility sucks and that's just all there is to it. Of course, your doctor will be able to explain anything you don't understand, but they run on a tight schedule and I don't know about you, but I don't want spend a whole (expensive appointment) having terms like HCG, IUI, IVF, sperm morphology, motility, mobility, etc. explained to me. It's nice to be able to say, "yes, I understand what you're saying, can we discuss my concerns/options now?"

2) Knowing your body- Knowledge about how your body functions including when you ovulate each cycle is not only interesting but it's powerful stuff (I'd venture to say this is important for all women regardless of fertility or lack thereof). Before I started this journey, I couldn't really tell you how long my cycles were and I certainly couldn't tell you when I was ovulating. It was only through charting, paying close attention to cervical fluid, and observing the subtle yet quite profound changes in my body each cycle that I was able to help time intercourse perfectly and when that didn't work after months and months, I could confidentially say that yes, there was indeed, an issue. Also, when you chart and hand those charts over to your doctor, you're giving him/her data in which to better help them understand your unique situation. Even though I've been diagnosed with PCOS (confirmed via hormone panel and saline ultrasound) my charts were able to help my doctor see that I was ovulating correctly and, therefore, the PCOS is not the cause of our infertility. A few blood tests to measure progesterone levels during the luteal phase over a couple of cycles helped confirm what my charts already told me.

3) Understanding your options- Infertility can make a person feel very out-of-control but learning about the disease can help you make the most informed decisions possible. I don't know about you but I'd like to have a say in my own healthcare especially when it comes to building my family. I don't have a medical degree and I know that I need guidance and support from those whose speciality it is to help get me conceive and carry to full term, BUT that doesn't mean that my body is at the whim of every test and medication that a doctor wants to give me. Not all women share this hesitation when it comes to treatment but I am not all women. I have to proceed in a manner I'm comfortable with and if that means waiting even longer to find another solution, than so be it.

Not only is knowledge building essential for the infertile couple, but it's also helpful if you're in a supportive role. Learning a little bit more of the lingo and the tests involved in diagnosis and treatment options can help you, as a supportive friend, show your interest in the disease and learn a little more about what your loved one is going through.

I'd love to know what resources, books, etc. that you've found particularly helpful. Please feel free to share your experiences in the comments below. Anonymous comments are also welcome.

A side note- Is it possible to be TOO informed? I don't think the issue is knowing too much, but I do think that it can be dangerous and ill advised to take medical treatment of infertility into your own hands (and I'm not referring to alternative medicine here so please don't misread me). I have heard of women self-medicating by obtaining Rx drugs without a prescription (and yes, this is possible) so my suggestion is that if you're not getting what you think you need from a doctor, perhaps it's time to find a new doctor. Or you may need to reevaluate what you think you know, know what I mean?


Anonymous said...

Thanks for another informative - and honest post about surviving infertility. My husband and I have been trying for 4+ years with "unexplained infertility" as our diagnosis, and for us, the worst part is the loneliness factor - sometimes it feels like you are the only person on the planet dealing with this.

I'm glad you included a comment on being "too informed." Sure, read books, look up stuff online, talk to friends, but then heed the dreaded advice that no one suffering from infertility wants to hear: let it go. Sometimes there is an answer, and the doctors can treat it. Sometimes there is no answer. Or they can't find the answer. Sometimes there is nothing to treat but an aching heart...

For me, I had to realize that obsessing over knowledge - knowing more and more about my body and what might possibly be wrong - was not helping. In fact, if anything, it was making me even more depressed!

Again, I think it's good to know your body and be informed, but there comes a point - and to those suffering from infertility, you'll know when you're there - that you have to step back and return to living your life, or at least the life as you now know it.


Lesley said...

I'm so glad that you are sharing your struggle with other women. It's so comforting for people to know they are not alone. I have several friends with unexplained infertility and it is the most frustrating and heartbreaking diagnosis. I am praying for you and B as you continue on your journey and feel confident that your sweet little one is being thoughtfully planned for and is on the horizon. I love you very much and I'm proud of you. I also found Taking Charge of your Fertility to be extremely helpful. I have very irregular cycles and had NO idea when I was ovulating. We tried for seven months before I read the book. After reading the book we were pregnant within a month or two. Sending well wishes to all of the hopeful mamas that are reading your posts. Love you!

Elsie and Joan said...

Firstly, I think you're great and incredibly brave to share your experience so honestly and openly. It's not an easy thing to talk about. But it is important to know just how many share this journey. You are not alone. I took great comfort in this article, I'd encourage you to read it too.

I recently blogged about my own journey, it felt like a weight was lifted by putting it out there, to share the weight of it. I hope you and your readers who have gone through it & care to comment on this post, can feel the same.

I agree that knowledge is very important but it can also be challenging when you do all the research you can do, yet the answers dont give you something to blame, a reason, the cure. Beware of spending too much time in web forums and self diagnosing, it's caused me alot of unnecessary worry!

I wish you all the very best of luck on your journey.

Belinda x

Ashley Boatman said...

you are so brave to share the details of your journey. it will help more people than you know. when you find yourself on this journey it can be very isolating and confusing. i just wanted to say thanks you for putting yourself out there for others and i hope that your life is richly blessed.

Down and Out Chic said...

@anon- I couldn't agree more that obsessing over knowledge and every little twinge and pain (especially during the 2ww) is not only not helpful but you're right, it doesn't change anything. letting go is definitely the hardest part, isn't it?

@belinda- I can't visit online forums anymore because I get way too sucked in and often very irritated. As far as self diagnosing, it's a slippery slope at best. Thank you for sharing your thoughts. Best of luck to you too.

Anonymous said...

My heart and all my well-wishes go out to you. I think it's great that you are sharing your story that might benefit others. Thank you.

Last summer I was considering coming off of birth control pills for some time. I wanted to try something more natural. A year ago I reached out to my sister and she said she had read a book called "Taking Charge of Your Fertility" - the same book you mention here. I have to say after reading the book myself I was outraged! Outraged, because I had previously considered myself pretty well-informed on women's health issues, but this book just broke down so many misconceptions for me. I can't believe how much I didn't know about my body! Why is this information hidden away in a book? Why don't we all talk about this more? Every woman should read TCOYF, regardless of whether they are trying to conceive or totally happy being on the pill.

I mentioned this book to some friends of mine, one friend that had issues with her periods and it just made me crazy, because this friend had gone through corrective surgery and still had no idea she could track to see if she was ovulating or what was happening with her body. She had seen so many specialists, not one had mentioned the techniques from this book that could maybe help her.

Anyway, moral of the story, I think it's wonderful to be informed.

Down and Out Chic said...

@anon- Yes, TCOYF is a must read for all women (in my humble opinion!). I didn't learn about it from a doctor and I can't believe more doctors aren't encouraging women to read it. Especially before something as serious as surgery! Thanks for sharing.

Anonymous said...

I really appreciate that you're doing this. My husband and I are about to start trying (and not telling the internet yet, so this comment is anonymous), It's so exciting and so, so, scary. Trying to be informed while not being overwhelmed with the myriad tales of how easy it was for some people and how awful it is for others is difficult, to say the least. I really like being able to see someone's honest, down-to-earth opinions.

Abbey said...

I have PCOS too! It is such a complicated condition and affects all aspects of our lives.

drollgirl said...

i did not know you were going through this, and my heart goes out to you.

i am 42 now and having a kid is not a feasible option for me for many reasons -- i just missed the boat on having kids, and i really am not sure i would have been able to anyway. i am ok with this most of the time (hell, i can hardly manage my own life), but sometimes it makes me burst into tears.

if you want children, i hope you are able go find a way. hugs, girl.

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