Let’s Talk About PCOS

Gather ‘round, ladies and gentlemen.

Let’s talk about something that has been swept under the rug for far too long. Polycystic Ovarian Syndrome, or PCOS, is a common health condition affecting one in ten women. It is a disorder characterized by a hormone imbalance. This can create symptoms such as:

• Cysts on ovaries
• Hirsutism (unwanted facial/body hair)
• Irregular periods, including prolonged periods, amenorrhea (skipped periods), severe pain, ultra heavy flow, etc.
• Severe PMS
• Migraines on or around periods
• Thinning hair on head
• Weight gain
• Oily skin and/or severe acne
• Sugar intolerance
• Symptoms of IBS
• Insulin resistance, sometimes leading to diabetes
• Problems with fertility, sometimes infertility

One in ten women have this.

10% of women. This makes it a common disorder. Despite the fact that it is so common, a surprisingly small amount of research has been conducted on it. This means that it is not a very well-understood disease. Because of this, there is no real treatment – just the option to take birth control, statins, diabetes medication, hordes of supplements, and practice strict diet control in order to mitigate each individual symptom. 

It is also embarrassingly under-diagnosed. Many women suffer with symptoms for their entire lives without getting diagnosed. For women who are diagnosed, the options are to either continue suffering or to take the aforementioned medications and supplements.

I am one of the many women who have PCOS.

For years, I suffered from wacky periods, acne, occasional migraines, severe PMS, sugar intolerance, and hirsutism. My mom told me that she also suffered from the same symptoms, but that there was nothing we could do about it. I was 18 when I finally was diagnosed with PCOS. My mom was at that doctor’s appointment with me, and that’s how she finally found out that she had it, too. She was in her 50s at that point, and finally had an explanation for her years of suffering. It was too late at that point for her to do anything about it, but at least she had an answer. 

The list of symptoms above may seem kind of vague to most people, so here are more detailed explanations, including my own personal experiences. I’ve dealt with them since I was 13. I expect many women reading this to relate.

Irregular periods

I would skip periods for up to six months at a time, which might sound kind of nice to some people, but, believe me, it’s not. When you finally get your period after skipping for that long, it becomes a mega-period. The pain is awful – sometimes to the point where I can’t stand up straight and am literally sweating from how intense the pain is. The flow also gets very heavy. I have to be extra careful with what I’m wearing in order to protect myself properly and avoid embarrassing leakages. This is especially true while I’m sleeping.

Hirsutism

With the hirsutism, it luckily wasn’t that bad. I just had a few hairs on my upper lip and chin, which I had removed with electrolysis. (FYI – DO NOT DO LASER HAIR REMOVAL. It is extremely expensive and not permanent. The only permanent hair removal is electrolysis.) Many women have it much worse, with full mustaches, chin hair, cheek hair, excessive eyebrow hair, excessive pubic hair, and nipple hair. This can wreak havoc on a person’s self esteem.

The PMS…. Oh lord, the PMS.

PMS is a struggle for me every time. I get irritable, extra emotionally sensitive, and depressed. I don’t say these things in a hyperbolic sense. It’s pretty extreme. The slightest noise or tone of voice will make me irritable to the point of feeling violent. I get very emotionally sensitive, and when I say “depressed”, I don’t mean the blues. I mean full-on what’s-even-the-point-anymore depressed. The only way I get through it is by telling myself that it’s temporary and that it’ll go away as soon as my period comes. And, it’s like magic. The moment my period happens, I go back to normal.

The other part of PMS that might not seem like a big deal to most people is the sore and swollen breasts. They get so sore that even walking can be painful. I go up at least half a cup size every time I have PMS because of the swelling. I’ve even heard stories from other women with PCOS of going up a full cup size.

The acne

I generally have clear skin until the PMS begins, and I start breaking out. However, I don’t have it nearly as bad as some other women have it. Many get severe acne and scarring. 

The migraines

I also will sometimes get migraines. Anyone who’s had a migraine knows that they are not just a headache. In fact, the headache itself can be the mildest part. From a scientific standpoint, they are a neurological disorder. From a personal standpoint, they are a full body experience. For me, I get the visual aura before the headache hits where I have wavy lines in my vision and dizziness. I have to lay down or else I will walk into walls and other objects because my vision gets so bad. Many people who experience migraines will also suffer from nausea and gastrointestinal distress.

Sugar intolerance (and, for some, diabetes)

The newest symptom that has come to the forefront for me is a sugar intolerance. For the past few years, I wondered why every time I ate sugar, I’d get bad acid reflux, wake up nauseous in the middle of the night, and experience severe fatigue and headaches for the next day or two. I felt like I had a hangover every time I ate more sugar than what’s in a small cookie. It took some digging through the depths of the internet to find that many women who have PCOS have trouble digesting sugar. PCOS can lead to insulin resistance, which means that your body is producing insulin, but doesn’t respond to it. This causes your body to produce more and more insulin to make up for the sugar that is not getting broken down. This puts strain on your body, which can then convert the sugars into toxic alcohols. This is what gives you the hangover-type feeling – which is actually called a “sugar hangover”. This can lead to weight gain and, in many cases, diabetes.

The sugar and carb cravings

Further, PCOS will trigger women to crave sugar and carbs. It sounds counter-intuitive since our bodies are not equipped to handle sugar, but, for many women, it is almost like an addiction. This happens because of the large amount of insulin our bodies secrete, even though it ends up not effectively breaking down the sugar. It’s a vicious, never-ending cycle.

Infertility

A vast majority of women also experience low fertility or infertility, which, for many, is the most difficult symptom to deal with. Because of the irregularity of periods, women will release “old” eggs, which can make it difficult to conceive. It also makes miscarriages very common for women with PCOS. This is something my mom suffered through, and something I’m expecting to experience if I ever decide to have kids. Miscarriages can be an incredibly traumatic experience, and is not something that I look forward to.

In addition to all of the above symptoms…

Women will also have symptoms like IBS (irritable bowel syndrome), ovarian cysts (cause many health issues including pelvic pain and gastrointestinal issues), and thinning hair on head.

And, for a side effect from all of the above side effects… mental health disorders.

Combine these symptoms and it often equals mental illness. Why? Because many aesthetic issues like hirsutism, weight gain, and thinning hair create low self esteem. The physical issues such as pain, PMS, and sugar intolerance make life difficult. Infertility and miscarriages are sometimes so traumatic that women suffer PTSD. Anxiety disorders and clinical depression rates are much higher in women with PCOS than in those who don’t have it.

There is only one main treatment option: birth control.

I refuse to take it for two reasons. The first reason is the side effects that accompany birth control. These include severe mood swings, nausea, and increased cancer risk, among many other side effects. This link includes a detailed, comprehensive list of the risks of birth control. I also don’t want to take birth control because it just treats the symptoms, not the cause. 

The other treatments

And, of course, there are the many other pills you can take to help with specific symptoms. Diabetes medication for the insulin resistance, statins to control cholesterol for the women who experience weight gain, a plethora of supplements, and various cosmetic procedures for hirsutism, acne, and other aesthetic problems. However, these also just treat just the symptoms and not the root cause.

This begs the questions… Why is there no real treatment available?

Because it is a woman’s disease, therefore not prioritized. As with most other industries, the medical industry is run by men, and most don’t look upon diseases like PCOS as important issues. Women are expected to just grin and bear it – the pain, the misery, everything. We are mocked for having PMS and ‘being emotional’. Our ‘woman pain’ is completely dismissed as something that we just have to deal with. We are shamed for acne, weight gain, and infertility. They throw birth control pills at us, but then many women experience Post Birth Control Syndrome after deciding to go off of the pill – something many doctors don’t even recognize as a real condition.

And, because ‘women’s issues’ make people uncomfortable, we are not allowed to complain or talk about our distress.

Every time I’ve brought my symptoms up to doctors, they have been very dismissive. They look at me and say “don’t worry about it”. When I tell them about my symptoms, they wave me off and say, “you’re thin. Don’t worry about it”. As if being thin makes my symptoms unimportant or less than what they really are. I know that I shouldn’t have a sugar hangover for two days after eating a cupcake or feel severely depressed in the days leading up to my period. It’s like they don’t think all of my different kinds of pain and confusion matter. Is their dismissiveness just because they don’t understand this disease any more than I do?

I have done a lot of research on PCOS to see what I can do to alleviate my symptoms.

It’s sad to me that I have to take advice from random people on the internet instead of getting clear instructions from a doctor. Every symptom  needs a different treatment option, which means that treating PCOS requires an entire lifestyle change. I already live a healthy lifestyle that I am happy with, so I am not interested in a shift. How many of you would want to change your lifestyle for a condition that doctors and scientists have chosen to ignore, especially when there’s no scientific evidence that it’ll actually work?

I am talking so candidly about my experiences because it is important to remove the stigma surrounding ‘women’s issues’.

I know that there are countless women who share my experiences, but are silent because everybody, including doctors, act like they don’t want to hear it. But, we should not be ashamed or embarrassed to talk about these things. We need to make our voices heard and our suffering and discomfort understood. The proper studies must be conducted. This can not be dismissed for much longer because of old-fashioned, misogynistic ideals. 

This mentality has also made it hard for many women to access proper treatment.

This article discusses Hilary Swank suing the SAG-AFTRA health plan for refusing to cover her surgery to remove ovarian cysts. They cited it as a ‘fertility issue’, saying that a surgery to address an issue to do with ‘women’s procreation’ is not worthy of being covered. The blatant misogyny aside, she wasn’t even getting the surgery for procreation – she was getting it because the cysts were drastically interfering with her overall health and well-being.

If you are suffering with PCOS, please know that you are far from alone.

There are so many women who are living through it with you, whether they know it or not. The time has come for change! Men, if you have made it this far, I commend you. If you have a girlfriend, this may help you understand her better. And, you can help us spread the word.

Let’s keep the conversation about this going! If you have experienced similar struggles, let us know in the comments below!

 

Photo by Engin Akyurt from Pexels