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Voices of PCOS: Mandie’s Story

Posted Sep 07 2011 8:45am

Welcome to our second feature story in this week’s Voices of PCOS series in support of PCOS Awareness Month. Yesterday , we heard Kristin’s story about living with PCOS and the Glycemic Index.

Today we hear from Mandie from To Love a Rose , as she walks us down the winding road of her life with PCOS.

Zen and the Art of Baby-Making: Walking the Alternative Path of PCOS


Photo by mjs_2009 via Flickr

As I sit here readying myself to write this blog, I have to be honest and say that I’m finding it hard to even know where to begin. PCOS has affected my entire life, even when I didn’t know it, and it seems impossible to somehow condense it; but I’m going to try my best…

Two months into my marriage in the fall of 2008, I got a positive home pregnancy test. First, I got the beautiful, pink double lines; then, my new husband ran out and bought me a digital (so high tech!). It read “pregnant” immediately. Wow. Two months into our marriage?! We weren’t expecting it, but it wasn’t a terrible thing, we supposed. We could survive this.

As if it was such a bother, but we’d make do.

My mom had been diagnosed with endometrial cancer just 10 days after our wedding; so, at the time, my world was in complete upheaval. Her cancer had breached the “safety” of her uterus and invaded her lymph nodes. This made her a stage 4. In the cancer world, this means “very much NOT good.”

If I had known then what I know now, nearly 3 years later, I would have taken the time to go to a doctor immediately. I probably would have been on progesterone support. I would have had my betas checked as much as possible to make sure they were doubling when they should. I would have taken my prenatal vitamins every day like clockwork. I would have… I should have…

But I didn’t.

A week later, I had the most hellacious period of my life. I experienced my first miscarriage. Again, I wish I would have put more weight into this event; but I was so naive, so uneducated about my own body, that I let it slide by. Besides, I had my mom to think about. So, we didn’t tell anyone. We thought we’d just try again sometime and get pregnant and take better care and be more mindful then. Right?

I went back on birth control pills for about 6 or 7 months, just to be safe and get me through my mom’s surgery and the better part of her treatments. She responded very well, and by summer of the next year (9 months from start to finish) she was declared cancer-free.

Excited and relieved, we decided “Why not try to get pregnant again?” Sure, why not? I went off BCPs, and we stopped preventing. It was an exciting time. We were so naive and full of expectancy. We started picking out baby names (traditional Irish to honor our families or modern hipster?). We started talking about school options (private or public?). We began talking about the nursery we were building into our new loft apartment to be done in a few months (gender neutral or wait to learn the gender and decorate accordingly?).

Little did we know that all of these issues would be the absolute least of our worries in the long run.

From June to December we tried without telling anyone. We weren’t getting pregnant, but we didn’t really think too much of it. My mom had always told the stories of how long it took her and my father to conceive but they had eventually conceived, right? So, we were just experiencing the same thing. We would be fine. We just needed to keep trying.

By late December of 2009, I had been on enough trying to conceive online community boards to know that 6 months with no pregnancy very well might mean that something really could be wrong. I went to the local bookstore on one freezing cold day and bought Toni Weschler’s or “the Bible” in the TTC world.

I was blown away at how little I knew about my own body and how it worked (or was supposed to work). I copied the fertility charts from the back of the book and started charting my daily basal body temperature, cervical position, cervical mucus, and every other twitch or twinge I felt. I was obsessed.

By April/May of 2010, I had done enough charting to know that something was indeed very wrong. My charts hardly ever showed a true temperature spike to indicate ovulation, and my cycles sometimes last as long as 45-50 days.

I went in for my yearly exam with my OB/GYN, Dr. K, the next month. For the first time in my life I had an abnormal pap come back. Not only was it abnormal, but I had stage 3C pre-cancer of the cervix. As I sat in Dr. K’s office going over treatment options, he asked, “Have you ever been diagnosed with PCOS?”

PCOS, I had heard of that…

Yes, my mom had been told at the Cancer Treatment Center in Zion, IL that she only got endometrial cancer, because she had PCOS (as it’s a leading cause of endometrial or uterine cancer). My cousin, T, had suffered years of infertility due to PCOS; but she had eventually gone on to have two beautiful boys. Oh, and then there was my biological grandmother…once my mom had been diagnosed with cancer, the state had given her the records of her birth-mom – she had died in 1987 from endometrial cancer, caused by PCOS, which got into her lymph nodes and eventually into her spine.

But me?

No, I had never been diagnosed. Surely all my previous doctors would have found it, right? No, it couldn’t be my diagnosis.

After a successful surgery to remove the pre-cancer on my cervix, Dr. K scheduled an appointment with his partner, Dr. S, an RE (reproductive endocrinologist) who specialized in fertility treatments in spite of my denial that I needed it. A week later, with my feet in stirrups for what would be the first of what now seems like a million times, an ultrasound tech counted out no less than 50 cysts on each of my ovaries. Blood work confirmed my adrenals were out of control. My testosterone was within quasi-normal range but my estrogen was through the roof. I hadn’t gained much weight (maybe 20 pounds total) so, I wasn’t considered “normal” in that sense, but it was true…I too had PCOS.

Fast forward a few more months and we were reeling from the aftermath of a failed adoption. Since my mother, uncles, a cousin and two good friends had all been adopted (3 from other countries), my husband and I thought this would be an “easy” alternative to attempting to battle my PCOS through fertility treatments. It wasn’t.

Four days after Christmas in 2010, we sat in Dr. S’s office going over treatment options. We decided we were in it for the long haul. We were going to fight this with all of the resources we had. We wanted a family and we were ready to make it happen no matter what the journey entailed.

At this time, my mom came forward and confessed that she had suffered multiple miscarriages before and after each of her 3 pregnancies and had been forced to use Clomid for months to conceive each time. Naively, we thought, “Oh good, we’ll pop a few Clomid and within a couple of months we’ll be pregnant too.”

But Clomid wasn’t enough. Next, I was having an HSG (hysterosalpingogram: a sort of x-ray to see if the uterus and fallopian tubes are clear of obstructions, mine were). Then, I was giving myself stomach injections of Bravelle. After that, we were doing IUIs to give the sperm the best possible chance of reaching the egg. I was using progesterone suppositories to enhance my “weak ovulations.” I was taking 3 or 4 drugs each cycle. But each month would end in a negative HPT – same as always.

After 7 months and $12,000 (oh the joys of insurance NOT covering infertility treatments!) we were spent – physically, emotionally, and financially. Dr. S told us his next move was ovarian drilling to prepare for IVF. We would need at least $20,000 for one, maybe two rounds of IVF. He wanted to be clear that there were no guarantees.

That was it. We were done.

At that moment, I began to delve into the alternative realm of treatment. I did all the research I could to discover treatments that didn’t require the help of Western medicine. I had recently joined the website SoulCysters and heard many good things about acupuncture as well as Traditional Chinese Medicine (TCM) and Chinese herbs for the treatment of PCOS and infertility.

I was desperate; I’d try anything. So, I jumped in with both feet.

In less than a week, I was lying on a table with needles sticking out from the top of my head, my arms, my wrists, my stomach, legs, etc. I honestly didn’t know if it would help, but I went with it. I also bought Hillary Wright’s and Colette Harris and Theresa Cheung’s and began changing my daily diet and exercise schedule. I drastically reduced my carb intake, and I completely stopped eating refined sugar (if you are curious, I now use a product called which is much lower on the Glycemic Index while still being naturally derived from lactose and fructose).

Having grown up on an organic farm, this was something I had always felt was better for my health anyway. I also became much stricter about exercising daily with tough cardio and soothing yoga.

I also began a regimen of traditional Chinese herbs designed to improve the metabolization of sugar in the blood, reduce phlegm in the body cavities (in TCM, it is believed that an excess of cold and phlegm is what causes the waxy build-up on the ovaries of PCOS women to begin with), and improve blood movement overall (if you want to learn more, check out my post that details on what I took and from where you can buy these herbs ).

Within one round of treatment, my cycle was a perfect 28 days with a clear ovulation, temp spike, and 14-day luteal phase. I had never experienced this kind of normalcy, not even when I had started my period at age 11, and I have to say, it’s been fabulous.

This brings me to where I am today, September 7, 2011. My husband and I have decided that this is our last cycle of TTC a biological child. I am so grateful that acupuncture and TCM got my body back on track. I know now that my body is more than capable being healthy and healing itself, something western medicine could never offer me with its pills and shots.

Even though we could keep going, we’ve made a decision to give adoption our full attention again. We feel much more confident and much better educated about things this time around and we’re really looking forward to starting our family through adoption.

If there’s anything I would want to leave you with, dear reader, it would be these things I wish someone had told me as I started my journey:

  1. Get educated. PCOS doesn’t have to ruin your life, body, and fertility. Dr. S told me that nearly 90% of women with PCOS do get pregnant. It might take a little longer and require assistance, BUT there IS HOPE.
  2. Know the warning signs. Did you start your period before age 14? Are your cycles irregular? Do you sometimes go months without a period? Do you sometimes have heavy or overly-frequent periods? Have you been TTC for more than 6 months without any luck? Don’t wait! Seek help!
  3. Find support through online groups. Soul Cysters literally saved my sanity. No joke. If I had not had the wisdom, advice, and humor of those women while going through treatments each cycle, I probably would have wound up in a straight-jacket.
  4. Read books. Speak out. Discover. I know that for some it’s hard to talk about their IF journey, but I’ve learned that if you don’t speak out, no one will ever understand or be able to share. You can’t be upset when people are insensitive if you aren’t willing to speak out and help them understand. Likewise, your willingness to talk about your experience(s) might be the only life-line another hurting woman has. Support each other. Love one another.
  5. Find a doctor who understands PCOS well and get help. Most OB/GYNs are too busy doing pap smears and delivering babies to really understand all the ramifications of PCOS – but there are plenty who DO understand. Dig. Search. Never stop until you find someone who understands what you’re going through and how to treat you properly. If possible, find an RE. They are by far the best at understanding the power of hormones on the female body.
  6. Change your diet and exercise daily. You’ll be amazed at how cutting carbs and daily cardio can alter your body and life. However, for many PCOS-ers insulin resistance can become a huge issue – it was for me. You may need to go on something like Metformin or high doses of cinnamon to help control it and balance your blood sugar. Once this is under control, you will notice that you feel better and your cycles will probably level out and become more regular.
  7. Spread the word. So many women in my family have been affected by PCOS, but several of them would never have known (or might not have known until it was too late) if I had not been vocal about my own experiences. Speak out – you might help save a life.
  8. This is the most important: NEVER GIVE UP HOPE. Just because we didn’t get pregnant, I don’t consider this journey a failure. Not even close. I understand my body and health so much more now. Not only that, I also know that my body can be normal and healthy again. Yours can be too.

I want to thank Keiko for this opportunity to share my story and spread the word about PCOS for PCOS Awareness Month. I only hope that my experience will help someone else change their health and fertility for the better.

All the Love in the World,

Mandie, thank YOU for sharing your amazing story with us. I know your words will help many who may be going through the very same things. Come back tomorrow when we hear from Melissa at With Every Heartbeat as she unveils the mystery of the “skinny cyster.”

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