PCOS

Breaking the Silence: Navigating the PCOS-Miscarriage Connection

Did you know that Polycystic Ovary Syndrome (PCOS) can also increase the risk of miscarriage?

Note: I will be covering the symptoms and effects of polycystic ovary syndrome. If you are uncomfortable discussing topics of menstruation, reproductive organs, miscarriage, and medical symptoms, please exercise your discretion.

Did you know that although Polycystic Ovary Syndrome (PCOS) is known as a common cause of infertility, it can also increase the risk of miscarriage?

Women with PCOS are more likely to have a miscarriage. The average woman’s risk of miscarriage during the first trimester is 10-15% while women with PCOS are more likely to miscarry with a 30-50% risk. This means that women with PCOS are three times more likely to miscarry than women without PCOS.

When you are diagnosed with PCOS no one prepares you for this reality. If you are lucky enough to get pregnant there is at least a 30% chance that you’ll miscarry before the first trimester. Personally, that doesn’t sound like great odds especially considering that you are already battling fertility odds.

What are those odds you ask? Well, let me tell you. While a completely healthy young couple has a 25% chance of getting pregnant during a single cycle, takes on average 2.5 years longer to get pregnant with PCOS.

I feel this statistic deeply in my soul. As someone who has been married a little over the two-year mark, we have only had one successful pregnancy, and that pregnancy resulted in a miscarriage.

Why Does it Happen?

There are several different factors related to PCOS which can increase your miscarriage rate. These include:

High levels of androgens or male hormones (Hyperandrogenism)
Elevated LH levels
Insulin resistance with elevated Insulin levels
Endometrial Dysfunction with failure to implant
High plasminogen activator inhibitor-1(PAI-1) activity
Infertility treatments
Genetic abnormalities

Why does this happen to begin with? Women with PCOS may experience difficulties getting or maintaining a pregnancy due to their menstruation cycle (monthly period). Many symptoms if PCOS include:

too few menstrual periods
having your period for longer than usual
not getting your period
very heavy periods
higher levels of male hormones like testosterone
acne breakouts
getting facial hair and extra hair in other places
small cysts or bundles of fluid in the ovaries
fewer eggs released from the ovaries

While PCOS isn’t life-threatening, there is no cure for it.

No One Prepares You

While I knew about the fertility struggles, I was not prepared to miscarry our baby in March of 2022.

Not only was the process of discovering the pregnancy to miscarriage whiplash quick, but it was an extremely painful process. I had been experiencing excruciating pelvic pain continually for about three weeks. I had lower back pain similar to when I had kidney stones, accompanied by exhaustion and some nausea. Regular pain pills didn’t alleviate the pain, and it woke me up at night. Also, no one talks about the blood loss.

The emotional and physical pain is terrible and certainly not something you are prepared for in your early twenties. The experience makes you scared. Will I conceive again? Will I miscarry again? Was my first baby a boy or a girl? Did I do something wrong?

It sounds stupid, but I think about that baby often. He or she would have been two now and I wonder what they would have been like. I have other family and friends who have had similar experiences to commiserate with. While their mutual loss takes away some of the guilt, the loss still remains.

Resources and Help

If you have PCOS your body might make more of both the male hormone testosterone and the female hormone estrogen. Your doctor might recommend prescription medications to help balance your hormones which may include:

metformin to balance insulin levels
clomiphene citrate (or Clomid) to help balance estrogen levels
birth control pills to balance estrogen and testosterone levels (before beginning fertility treatment)
fertility medications to jump-start the ovaries to send out more eggs

While the process of determining your fertility is a struggle, it is possible to have a baby with PCOS. There may be some struggle, heartache, and a lot of frustration, but that doesn’t mean it isn’t possible.

You can find support and answers to your questions through many credible sources:

Where’s The Baby?

It’s like not having children is a problem that needs to be fixed and you – the potential parent- are the problem.

As a married practicing Catholic, there is some general surprise that my husband and I do not have children yet. There seems to be a general expectation that we would move from “love and marriage” to a “baby in a baby carriage” within the first year of our nuptials.

There have been many sly questions alluding to the absence of children in our home. It almost seems like a faux pas in some spheres. In fact, many of our friends and acquaintances already have one or two children and are looking to expand their families.

As people in our early twenties, there is the expectation that we have biology on our side and that we are primed to start our family immediately.

But expectations are not reality…

In April, my OBGYN was 100% certain that my laparoscopic surgery would confirm a diagnosis of endometriosis. I have all the qualifying symptoms and completed all the necessary steps to assist in the diagnosis. I went through a barrage of blood tests, pelvic floor therapy sessions, diets, medications, and ultrasounds to confirm what was (or wasn’t) the problem.

I went under the knife expecting a pyrrhic victory, but it wasn’t a victory at all.

You can’t imagine how devastated I was when I found out that I didn’t have endometriosis. On a microscopic level, everything looked normal and healthy: no cysts, no fibroids, no cancer. Even my OBGYN was surprised and a little perplexed. On one hand, it is nice knowing that you appear to be healthy, but on the other, it leaves a trail of questions. If it isn’t endometriosis causing the issue, then what is?

While I am frustrated, I’m not particularly devastated. We don’t know exactly what is wrong with me, but I am relatively healthy. My excruciating pain is better and I have a wonderful and supportive husband by my side. Although there is always hope, I am okay with the possibility of never having my own children. We are both open to adopting.

So why am I telling you this? I am not looking for pity points, sympathy, or even tips on how to “boost my fertility”. I am okay with sharing my fertility issues, but a lot of people are not. I’m asking for a little understanding.

Don’t Ask

There is no set timeline for when a couple should have children, even if there is the expectation that they should have kids already.

It is a deeply personal decision to have children that is between the two respective spouses. It doesn’t matter if a family decides to wait due to health, financial, or mental health reasons because it truly isn’t any of our business.

I personally don’t like questions about my fertility, but I don’t shy away from them either. I know that my value as a person has very little to do with my uterus or what other people think of me. My inability to conceive is not a failure but rather a complex medical issue. It is not something to be ashamed of. It is a statement of what I have, not what I am.

But just because I am okay and open doesn’t mean that other people are.

When you ask some women about whether they are going to have kids, it is a visceral, gut-wrenching question. They have tried everything to conceive and failed. So many have experienced secret miscarriages, ectopic pregnancies, or infant death. Others take hundreds of pregnancy tests for missed periods only to be brutally disappointed. Some are terrified of pregnancy due to health conditions, while others are not ready to have kids. Some people have had hysterectomies due to cancer, others have male infertility.

When you ask them when they plan to have children, it is a deeply personal blow. Some people feel like they have to explain themselves in order to not be judged. Even when they bare their souls, they are met with unhelpful advice. It’s like not having children is a problem that needs to be fixed and you – the potential parent- are the problem. It is almost as though you have to be ‘excused’ for not meeting expectations.

Maybe I do want my own children, maybe I don’t. Maybe I am okay with adopting. Maybe the fact my mom almost died delivering me scares me. Maybe my infertility stems from my mother’s issues with conceiving. Maybe it doesn’t. Maybe it doesn’t matter.

What it comes down to is that it isn’t any of your business.

It doesn’t matter why someone has or doesn’t have children, and you really don’t need to know. I have met many unhappy women who feel incomplete or inferior because they feel like their identity is wrapped up in their ability to have children. It shouldn’t matter, but people make you feel like it does.

Children are a gift, not a right. As a parent, grandparent, sibling, friend, or relative, it doesn’t matter if your loved one has children or not. Unless you need to know for your own medical purposes, I suggest you refrain from asking when to expect a baby.

When PCOS Makes You Feel Like A POS

Pardon my French, but are we supposed to take this lying down?

Note: I will be covering the symptoms and effects of polycystic ovary syndrome. If you are uncomfortable discussing topics of menstruation, reproductive organs, and medical symptoms, please exercise your discretion.

Pardon my French, but some days polycystic ovary syndrome (PCOS) makes you feel like a real piece of sh!t.

“Irregular cycles are normal,” I was told by some family. “Don’t worry about it, here is what you need to do.”

Eat healthily
Get enough sleep
Exercise
Stop stressing
Stay away from unnatural medications

Here’s how that saga works out:

I wake up in the morning and I feel like a heavy rock is sitting on my pelvis. I have always had very irregular cycles so I wonder if it is time for my cycle to make its semi-annual appearance.

“You’ve only had one period this whole semester?” My roommate looks at me incredulously.

“Yes, but that is probably because of stress. I’m pretty irregular so I had one less this semester than I did last year.”

Her eyes widened and she grabbed my hand, “I know your mom is dead, so I’m telling you as a friend and out of genuine concern for your health: that’s not normal.”

“No, no, you are normal. Irregular cycles are normal.“

A year goes by with little change. I woke up one Saturday with a searing pain in my side. I was menstruating so I thought nothing of it. I slammed a Tylenol, went to a concert, played D&D, and completed a presentation for Friday. At three a.m. the following day, I realized that my pain had worsened and I was now throwing up more regularly. Then the pain was only isolated to one side and wasn’t letting up, even though my period was abating. Five hours later in the ER, they told me I had kidney stones.

“Why didn’t you come in sooner?”

“I thought it was period pain.”

“For two days?” I nodded my head in affirmation.

The nurse shook her head, “Honey, that isn’t normal. You should go see your primary care doctor.”

“Period pain is normal. Don’t worry about it.“

I was eating healthy, sleeping 8+ hours, exercising four times a week, unmedicated, during summer break the first time I was tested. I hadn’t had a period in 60+ days and I was experiencing pelvic pain. It had been five months since my kidney stones and I felt terrible. I checked off all the medical boxes for a “healthy” twenty-something-year-old but I didn’t feel normal.

The first doctor left me hanging. “You are underweight. Otherwise, I can’t figure out what is wrong with you. Are you sure you’re not pregnant? Maybe you should put on some weight.”

“You are normal. Everything is normal.“

Two years passed and the pain did not subsist. The periods remained just as painful and erratic. I went 120+ days without a cycle only to bleed profusely for 9 days. I had a hard time keeping food down with nausea and the stabbing pain in my ovaries.

I go back to the doctor haggard and sleep deprived. “Probably PCOS. However, it is too early to tell and your symptoms are too similar to endometriosis, but we are going to get you help.”

And they did help as best they could. In and out of doctor’s offices. In and out of pelvic floor therapy. In and out of pharmacies.

And the pain is still there.

Others have chronic pain conditions far worse than PCOS or endometriosis and I can only sympathize. It is so incredibly frustrating to be told that there is nothing they can do but offer a band-aid to your pain and hope for the best.

Support groups help. Family helps. Tylenol (sometimes) helps. But some days you just sit, write, and think about what a POS PCOS makes you feel like.

Tag: PCOS