Voices of PCOS: Melissa’s Story – PCOS and the “Skinny Cyster”

Welcome to our third feature story in this week’s Voices of PCOS series in support of PCOS Awareness Month. Yesterday, we heard Mandie’s story about exploring her non-traditional, alternative medicine approach to PCOS. Today we hear from Melissa from With Every Heartbeat, as she explains what it’s like to live with a PCOS diagnosis without all the tell-tale signs and symptoms. 

PCOS & The “Skinny Cyster” – One Size Does Not Fit All

My husband and I have been on the journey to baby since February of 2008. I began taking birth control pills my freshman year of college. Although they were pretty regular (usually 30-32 days in length), I had always had horrendous periods: a full 7-day cycle, heavy flow, awful cramping and pain that would often cause me to vomit or pass out; the pill helped with all of that.

Additionally, while on the pill, my cycles went from being pretty regular to gloriously regular: without fail, my period would arrive at 4pm on cycle day 28. Honestly. Once I stopped taking them, the first month was fine, but then the irregularities began. After seven months of “what the heck is going on with my body?!” and “why aren’t we pregnant yet?!”I was diagnosed with PCOS in August of 2008.

The doctor suggested we try adding Metformin to the mix in an attempt to regulate my wonky and sometimes altogether absent cycles. Metformin, for those of you who are not aware, is what I call a two-fer drug. It is actually a drug primarily prescribed to diabetics to help control their insulin levels but since many women with PCOS have insulin-resistance, it seems to help those women as well, aiding them in normalizing their periods. While taking the dreaded Metformin (more on that in a minute), we added Clomid to our repertoire as we tried timed intercourse for several months at home, and finally, we did two unsuccessful IUIs, both while taking Clomid. I had a chemical pregnancy with the first one, and the second IUI was just flat out unsuccessful.

After the last IUI attempt, I found out I needed open heart surgery in October of 2009 to correct a congenital defect, which in and of itself is a whole other topic. I subsequently had a pacemaker implanted in June of 2010. We took a non-voluntary medical leave of absence from trying for fifteen months up until December 2010, when I was finally given the “green light” from my cardiologists to resume trying. To this day, all of our conception attempts have been fruitless.

Technically, I should probably be taking Metformin again but I just can’t bring myself to do it, and my current RE understands my hesitation. Usually, the targeted dose is 1500mg. I was only ever able to tolerate 800mg due to my petite size – it made me so sick I couldn’t even keep food down and lost weight I didn’t have on me to lose – and the fact that my hormone levels were borderline for PCOS. Which I suppose is as good a segue as any for my chosen topic…

PCOS is not a one-size-fits-all syndrome.

I am 5 foot 4, and I weigh about 118 pounds. If you read the description of PCOS, the list of physical characteristics of the syndrome includes:

• Women are usually overweight due to insulin resistance related issues;
• Excess body hair in places women don’t normally have excess body hair, i.e. your face (due to a hormone imbalance);
• Acne due to elevated testosterone, and;
• Male pattern baldness, also due to testosterone imbalance.

Internally, the syndrome is characterized by:

• Elevated testosterone levels
• Elevated insulin levels
• String of pearls like appearance of cysts on your ovary/ies
• Irregular or absent periods

For a variety of reasons, PCOS can also negatively affect your mood.

Some people have all of the symptoms, some people have one or two. It really is a tricky little diagnosis. To look at me, you would never know I had PCOS. I don’t have any of the outward characteristics. In addition, my hormone levels and insulin levels are all borderline for the syndrome. The only clear sign I have pointing to my diagnosis are the ovarian cysts.

Oh yes, and my infertility.

I don’t ovulate on my own, and/or have anovulatory cycles. I once went 90 some-odd days without a period. It was before I knew I had PCOS so I thought I was pregnant. Imagine my surprise, confusion and disappointment when my period finally arrived, nearly three months late. This pattern continued with some variance until my PCOS diagnosis and even for a few months after. When the doctor called me with my results (on a Sunday, mind you), I was shocked. Even he seemed surprised. I didn’t understand how I could not “fit the bill” and still have PCOS. In some books and on many websites and forums, women like me are referred to as “skinny cysters.”

I would like to preface this by saying that I completely understand and appreciate that weight is a sensitive subject. It is certainly not my intention to imply that being a thin woman with PCOS is more or less challenging than being a woman with PCOS who struggles to lose weight. In my opinion, to say that treating PCOS is a challenge is an understatement.

As I stated before, it is not a one-size-fits-all syndrome.

To treat a woman who has PCOS but isn’t overweight and whose hormone levels are borderline presents a unique set of challenges. Why? Because there is no weight to lose to improve fertility odds; there are no hormone issues to get under control with medication and diet. The things that are commonly suggested for women with PCOS to increase odds of pregnancy aren’t really options if you’re a petite woman with the syndrome. In some cases, the doctor may want you to actually GAIN weight. So what is to be done? I’ve chosen to focus on maintaining the status quo, with some added “extras” in the form of fertility meds and treatments.

For me, this means doing what I can to maintain my weight (for some, this may mean even adding a few pounds if necessary) and keep my hormones under control. I have chosen to follow a diet which promotes whole grains, avoids additives like sugar, and steers clear of caffeine, soda, and alcohol. I eat and drink whole milk products instead of 1%, 2%, or skim, avoid trans fats like fast food and limit saturated fats. This diet is commonly referred to as the “Fertility Diet” and is outlined quite clearly in a book called, most appropriately, The Fertility Diet by Jorge Chavarro, MD, ScD, and Walter Willett, MD, DrPH. A cookbook entitled Cooking to Conceive by Kim Hahn and the Editors of Conceive Magazine follows the guidelines of the Fertility Diet to create delicious recipes using fertility-boosting foods.

In addition to “prescribing” the Fertility Diet, my current RE recommended I exercise 30 minutes a day. In my situation, it is important to use daily exercise as a way to keep active, keep the blood flowing, use exercise as a stress management tool, and not aim to over-exert myself in an effort to start losing pounds… because some extra around the middle is good whereas too much or too little is a hindrance. See how this can be complicated?

One thing I discovered with the idea of stress management in mind was fertility yoga. After searching a bit online, I purchased a VHS tape (yes, VHS, but they do have them in DVD format; the VHS was just cheaper) called Yoga 4 Fertility with Brenda Strong. It was a way to change up my usual walks in the park while also relaxing my body and mind. I also take a daily pre-natal vitamin and choose to drink only water, decaf tea or coffee, and the occasional small glass of juice.

So what are the extras? For me, most recently, it’s been Femara, another two-fer drug. Femara is primarily for breast cancer patients but has also been shown to be effective in helping grow eggs and with ovulation (like Clomid) if taken in low dosages and for certain days of a woman’s cycle. I started out taking 2.5mg cycle days 3 through 7, moved up to 3.75mg, and then most recently, for my current IUI cycle, took 5mg. I grew just one beautiful egg, but it was glorious because it was there, and my body did it. With help, but it was a small victory for this girl.

The double edged sword of the matter is that even though I do everything I’m “supposed” to do, even with the assistance of infertility meds, and yes, even with IUI’s – we have yet to become pregnant. Even with the help of medications, I sometimes don’t ovulate and the doctors think I may not ovulate with any kind of regularity on my own.

So here it is, the “what if” game: what if I can’t achieve pregnancy?

You see, PCOS is the evil gift that keeps on giving: it can also affect your eggs in that they can be hard to penetrate. My husband has stellar sperm. With the IUI we did just this past weekend, he had 102 million sperm per milliliter and a motility rate of 96%. Awesome, big pat on the back for him.

We are hopeful, but we are (and here is our favorite term as of late) cautiously optimistic: because we know that just because conditions seem perfect, dreams are shattered; because we’ve been hurt too many times before to get overly excited. And it’s sad, isn’t it? That constant need for caution, for protection against defeat, of getting our hopes up too high?

But you know what?

Where there is love, there is hope, and if we lose hope, we lose everything.

So cautious optimism it is.

Lastly, I thought I’d touch on an infertility myth: infertility only affects those over 30. This one is a three-way tie with, “just relax and it’ll happen” and “if you adopt, you’ll get pregnant.” My husband and I are 27, and we started trying for a baby when we were 24, which makes me one of the 7% of women infertile before age 30.

We met in high school and started dating when we were 15. After 12 years together, we want to have a baby more than I can adequately express. In one blog post, I likened having a baby to the personification of love: a living, breathing expression of the love you share with your spouse or partner.

As an infertile woman, you are constantly waging a battle against fear, self-esteem issues, the “what if” game, feelings of guilt if your body is at “fault” for failing to conceive month after month, feelings of inadequacy as friends and family members begin or continue having children around you at a seemingly alarming rate. You feel left behind, different, alone. The list goes on and on.

If you’re young, as we are, many people (even doctors) say, “It’s ok, you’re young, you have plenty of time.” But it’s not ok. I know what PCOS is and what it does and it’s not going to get any better as I get older. It’s only going to get harder. I know what it’s like to spend years yearning, praying, hoping, wishing for a miracle — do they? I might be 27, but does that mean I hurt less than the woman who’s 35 or 40? That our dreams are any less valid or that our treatment or situation should be treated with any less sense of urgency?

Bottom line: infertility is a nightmarish beast at any age.

It takes courage, strength, and an iron resolve to get through it. And a support network. Surround yourself with loving, supportive people who truly care about you and your journey to parenthood. I don’t know where we’d be without ours.

There are some terrific online PCOS support groups, such as SoulCysters.com. In fact, it was on that website that I first came to “meet” other skinny cysters. In addition, I’ve found that starting a blog and using it not only as a way to share our journey with our family and friends whom we’ve selected to follow along on this path, but also as a means of finding other women out there in the blogosphere who are going through similar circumstances, is both extremely therapeutic and encouraging.

We are not alone.

Thanks for reading and I wish you all the very best of luck on your journey to becoming parents. And Keiko, thank you for this amazing opportunity to share my own experience with PCOS. If I may, I’d like to leave you with a favorite quote of mine:

“Hope is the companion of power, and mother of success;
for who so hopes strongly has within him the gift of miracles.” – Samuel Smiles

Melissa, I know I’m not alone in saying we are all rooting for you in your journey toward parenthood. Thank you so much for sharing your experiences with PCOS and dispelling some myths about it in the process. I know your message of hope will mean so much to those who are living with PCOS.

Stay tuned for our final post in the Voices of PCOS series tomorrow, as Kymberli from The Smartness tells us her unique tale of life with PCOS.