September is PCOS awareness month. PCOS stands for polycystic ovarian syndrome. It affects around 10 million people worldwide. Since it involves the hormones related to reproduction, it can cause many different frustrating and uncomfortable symptoms.
Fatigue, increased facial and body hair, thinning of the hair on your head, acne, painful periods and ovulation, mood changes, headaches, sleep problems and, of course, infertility are all possible symptoms of PCOS. It also changes the way your body uses insulin.
A lot of people experience weight gain and extreme difficulty losing weight, but you don’t have to experience unexplained weight gain to have PCOS. Many people experience multiple ovarian cysts, but some actually don’t. PCOS is complicated (and probably needs a new name.)
In honor of PCOS Awareness Month, five women with PCOS agreed to share a snippet of their stories with Scary Mommy. Here’s what they had to say.
Shani G. from Nashville, TN struggles to make peace with the way PCOS makes her body look.
“I have super painful periods and ovulation, including the crippling pain of cysts rupturing. I’ve noticed a total inability to lose weight with normal diet and exercise. I’ve experienced skin tags, cystic acne and ingrown hairs on my inner thighs, and dark skin under my arms. It’s a nuisance. Because of the effects of PCOS, I don’t love my body, and I feel a lot of shame over it. It adds to my depression and anxiety. I am very self-conscious. Working in the beauty industry makes me extra self-conscious because of how much bigger I am compared to others in my industry. I hate going to the doctor because all they want to do is talk about my weight. It sucks. I wish people knew how varied the symptoms of PCOS can be. It affects everyone very differently.”
Amanda E. from Napa, CA tried for fifteen years to have a baby without any success.
“PCOS can be such an emotionally devastating problem. I tried to have a baby for fifteen years with my ex-husband, and I never once got pregnant. I took so many pregnancy tests, and they were all negative. My struggle with infertility happened at the same time that I was attending a church that taught me that my infertility was my own fault. The idea was that God was “closing my womb” due to some kind of sin or moral shortcoming in my life. I wish I had known more about how PCOS affected my body so I would never have bought into that lie. As far as being plus size and PCOS, I have been blessed with some amazing doctors. They understand how much harder it is to lose weight with PCOS, and they don’t push me about it as much as I think some doctors might who don’t understand PCOS.
PCOS is one of the reasons people need to stop asking why someone doesn’t have kids yet! It may seem harmless to say, ‘You’d make a great mom,’ but it’s not. For years, I’d smile and say quietly, ‘Well, we’re working on it.’ Inside, I was screaming. I spent so many hours crying because I know I’d be a great mom, but my body won’t cooperate.”
Staci S. from Estero, FL suffers immense pain due to her cystic ovaries.
“After almost 10 years on birth control, I came off the pill. I ended up getting pregnant, but miscarried at 11 weeks. I got my PCOS diagnosis in the aftermath of that loss.
My symptoms aren’t the classic weight gain and hair loss. My first symptom was terrible pain with ovulation. When I have cysts, the pain gets to the point where I’m doubled over in pain, vomiting. I’ve even been admitted to the hospital.
I try to control my symptoms mostly with my diet, and I am successful now. While I was trying to figure out what would work for me, I became so afraid of the pain that I just didn’t eat anything. At my lowest point, I was medically underweight and people assumed I had an eating disorder. It really hurt because they had no clue on what I was going through. I didn’t like how I looked either, but I was scared to eat. To me, it wasn’t worth the pain.
My symptoms now include thinning hair and acne. I was able to have two sons, but both times, I was terrified I’d miscarry again. I had trouble breastfeeding (another PCOS-related issue) so I used formula, too. PCOS looks different for everyone. We might not all have the same experience, but in the end, we are all in the same shitty boat.”
Kate K. of Knoxville, TN shares her experience of controlling PCOS while in eating disorder recovery.
“I was diagnosed with PCOS when I’d been trying for a year to get pregnant without success. I think it was just bloodwork and an assessment of my symptoms. With a combination of Metformin and diet changes, I’ve been able to have regular periods with PCOS. I wish my doctors had explained early on how Metformin works, because my body also responds pretty well to a lower sugar diet with fewer carbs, and I’ve been able to decrease my dose.
The most troubling thing for me was the hirsutism. I bleached my facial hair for years. Some people saw past it, some people clearly could see nothing but it. I did laser treatments after I had my last child, and it has been pretty under control since then.
I am in eating disorder recovery, and it’s been my experience that every doctor looks at the PCOS diagnosis, sees I am not overweight, and tells me I don’t fit the bill. It’s frustrating, and it does always kind of drive the ‘stay smaller’ mentality in me when they make such a big deal out of it.
I’d like people to that there are treatments to help, and that lots of other women struggle with it. Do NOT be ashamed because you are not alone.”
Andrea G. of St. Louis, MO had to advocate for herself hard to get the diagnosis she knew she needed.
“I started to suspect that I had PCOS based on my own symptoms. Because I am young and thin, it took me almost three years to get a diagnosis. During all that time, I had ovarian cysts, acne, body hair…all the usual suspects. I finally ended up in the ER with a ruptured cyst, and my doctors started taking me seriously. It didn’t feel like a fertility ‘death sentence’ when I got the diagnosis. It was a sigh of relief. With a diagnosis, I could help my body in a way I couldn’t before. I’ve had some trouble conceiving, but I am grateful to have the diagnosis so we know where to start. I am optimistic that I will have a baby in my arms soon.
I want people to know that PCOS has many symptoms, and affects many body types. I’m just thankful I fought for myself and knew what I was experiencing wasn’t normal.”
Raising awareness about PCOS is important to me because I was diagnosed with polycystic ovarian syndrome when I was a teenager.
From the moment I got my period, I had problems related to it. I’ve been dealing with it for a couple decades now, and I still struggle with how it affects my body, and how it makes me feel.
I have hair on my chin and very little left on my head. I live in a plus-size body, and changing my size is a colossal struggle. I’ve dealt with difficult periods and irregular cycles my entire life.
The hardest part of PCOS for me has been decreased fertility. I never had 12 chances a year to get pregnant. I ovulated 5 or 6 times during a good year. Sometimes, just once or twice. I didn’t always respond to medications, and I lost 2 out of our five pregnancies. I had to have two different surgeries on my reproductive organs. It took my husband and me almost 14 years to have our three kids. It’s been such a wild ride, and even though I’m done having kids, my struggle with PCOS is far from over. It affects so much more than my fertility.
It’s important for people to know PCOS exists. There are millions of us out here fighting the same fight, even if every single one of our bodies is just a little different.
If you think you might have PCOS, contact your doctor for help. It might take some trial and error, but there is hope for a well-managed body and a comfortable life.