My PCOS Diagnosis

First Signs of PCOS

It started with weight gain.

 I piled on 10, 20, 25 pounds so fast I hardly had a chance to think about how I was going to lose them.

 Then my cycles – from my second period through my early 20’s, you could have recreated the calendar based on my consistency. And then…not.

36 days.

42 days.

59 days.

78 days.

At first I didn’t notice as much, and honestly didn’t mind.

I was “getting” to skip over something that was inconvenient, somehow gaining a few extra weeks of freedom every month.

I thought it was just all the change I’d been experiencing, figured it would even out when I settled into a new routine.

But then it didn’t.

Extra facial hair came next: not peach fuzz, but stubborn, excessive hairs that threatened to give me a mustache, a beard, or both.

Acne came in waves, and I had no idea how to handle it. I could count the number of pimples I had as teen on my fingers, and not it was an inflamed wave across my chin, my jawline.

The doctor pointed out that I had gained weight, suggesting that losing weight would help even out my cycles.

I tried, but it wasn’t coming off. I ate right, exercised, increased my water intake, started taking vitamins. Nope.

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The doctor encouraged me to keep trying, as weight loss takes time.

Other people made me feel as if I needed to try harder, as weight loss takes discipline.

I felt as if I was failing, as losing weight is apparently related to self-worth and value. (Why? Why did we create that idea?)

For every few pounds I’d lose, I’d mysteriously regain them out of the blue. No changes to my diet or exercise, and BOOM – 5 pounds back, 7 pounds back, 2 pounds back. Sometimes the gain was more than the loss, and my weight kept creeping up.

All the labs were done, with thyroid being a primary suspect, but that all came back normal. TSH, Free T4, Free T3, Reverse T3. Check, check, check, and check.

 Nothing wrong with my thyroid, all my organs were functioning well, no reason for all these problems.

At this point we had been trying to conceive a child for about a year, and nothing had come of it. We were ready for the next step, and started looking for a fertility clinic or specialist who could look at our case.

In the meantime, my doctor mentioned PCOS (Polycystic Ovarian Syndrome) – I was told it was a condition in which some women develop cysts on their ovaries, and that it commonly presents in women in their early 20’s.

At that point, I was just happy to hear a name, a potential cause we could diagnose and then work to treat.

I had my first ultrasound in a dark room with an ultrasound tech who had nothing to say.

Awkward silence. 

The wand.

The images.

This is where you imagine clasping your husband’s hand, seeing the baby you’ve been dreaming of, exclaiming with joy at the white figment in the center of the screen.

My screen was dark, and I had come alone. It was just another procedure in a long litany of tests, and there was no reason for two people to take off work to look at my ovaries.

Apparently, I didn’t have enough cysts to be diagnosed with PCOS. Mystery unsolved. The doctor encouraged me to lose weight, again.

I started seeing a new family practice doctor.

She looked at my labs and ultrasound images and said, “You have PCOS.”

I told her what my other doctor had said, about not having enough cysts. 

She frowned, told me that cysts are a symptom of PCOS, they are not the condition itself. I learned that PCOS is actually a disorder that impacts your hormones, including insulin, which is why some PCOS patients find that Metformin (a drug prescribed to diabetic patients) helps stabilize their hormones and enables them to lose weight successfully by eating well and exercising.

I learned that all the frustration and failure with weight loss had nothing to do with me needing to try harder or work harder – it was a result of hormones, specifically insulin, that were running amuck in my body.

The weight gain, facial hair, acne, late cycles, difficulty conceiving: all classic signs of PCOS.

I found a fertility doctor who scanned me with his eyes, smiled at my husband, and told him I needed to lose weight.

My husband had the tests done to check for male factor fertility. I wanted his tests to be clean, of course.

I also wanted to not be the problem, the stand-alone reason we didn’t have kids.

His tests were clean.

I found a different fertility doctor who reviewed my charts and files and labs and scans and beamed with joy: she was convinced I’d get pregnant with a little extra support, as there was no reason I couldn’t conceive.

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  • Metformin. Not effective, and starting to give me stomach issues, a known side effect.

  • Clomid: Not effective, and gave me waves of rage and anger at the slightest provocation, a known side effect.

  • Letrozole: Not effective, and gave me full body aches and pains, along with nauseous and dizziness, known side effects (no wonder, as it’s designed for cancer patients).

We exhausted the tests, scans, pills, and appointments available at that clinic and got referred to another, with the understanding that we were in deep now: the next steps would be IUI and IVF.

At this point I was under so much emotional duress: pressure at work, infertility, family troubles. I was having panic attacks, and had to see a GI doctor for stress-triggered IBS.

I still had never lost the weight, still had facial hair, still had acne.

And then we moved.

My husband received a job offer and we moved from Texas to Arizona.

We left our clinics behind, decided to take a break while we settled in.

This is where people want to nod knowingly, chuckling to themselves, all to ready to say, “And then you got pregnant? That’s how it goes. Once you stop trying so hard it just happens.”

 No Susan, that is not how it works.

 Do some people sometimes get pregnant after exhausting medical intervention?

 Sure. And they love to tell their miracle stories because they ARE amazing, miracle stories that are fun to tell.

 Do you know who doesn’t tell their stories?

 The people who stop trying and never have a child.

 That’s not a fun saga that people at parties, reunions, or potlucks want to hear about. You don’t have a pregnancy or baby that elicit comments and conversation about the process (and the forthcoming miracle), so what is there to say?

 You just have yourself, your empty womb, your partner who hurts with you.

 My story hasn’t finished, since it’s on hold while I actually live it.

 We’ve talked about picking up where we left off in the medical process.

 We’ve talked about adoption, or about at least doing foster care.

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 We’ve sat in the silence and not talked at all.

 I trust that things will work out, although I don’t know if that will mean pregnancy, adoption, childlessness. At this point, I assume it won’t look the way I expected, because that ship has long since sailed.

 I’m going to write about resources, about the questions to ask, the tests that helped, the things you can do to support someone in your life who has been diagnosed with PCOS or is struggling with infertility, because I care about those things from a deep, personal place. I’ve already started interviewing amazing women who have something to contribute to the narrative about women’s health issues.

 But first I wanted to tell you my story.