Let’s Talk About PCOS

PHOTOGRAPHED BY MEGAN MADDEN

Let’s start off with the Refinery29 article that spurred this post: Get Pregnant? I Just Want to Get my Period

The author writes: “almost a year and a half without a period, I find myself acutely aware of every complaint of cramps, every impassioned post about Diva Cups in a women’s-only Facebook group, and every pregnancy announcement — reminders of what it’s like to have a “normally functioning” female reproductive system

This is an A+ article that talks about what it’s like to desperately want a period, something that most menstruating people could never fathom. For them a period is just something to deal with that they would rather not have to or perhaps a welcome monthly reminder that you are not about to become a parent. Of course, for some people a menstrual cycle is literal HELL – requiring them to take off work or stay home from school because the pain and the symptoms are so great.

Is it weird that I am still sort of envious?

Let’s start from the beginning: I first got my period at the “normal” age of 13 years old. However, that is about the last time anything was normal regarding it. From age 13 to age 21 I would go months without a period and when I did happen to get one it would be extremely light, last a maximum of three days, and not come with any other regular menstrual cycle symptoms. It never occurred to me that this was strange. I had always been told that periods can be irregular when first beginning and that it can take some time for your body to get used to this new process. However, no one ever told me that “irregularity” was only meant to last a year.

The November of my sophomore year of college I got my period. Fine. Great. But two weeks later I got it again. I remember thinking that this was weird so I looked it up online. I found out that two periods in one month is NOT normal and so I made a mental note to stop by health care services to ask some questions that week. At 5AM the next morning I woke up in a pool of my own blood. It felt like I had wet the bed. Sorry for the specifics but my shorts were completely soaked through. I knew something wasn’t right, but I also knew that it had something to do with my menstrual cycle and that no one had actually stabbed me in my sleep. I tried to go back to sleep and skipped my first class to go down to health services. The nurse practitioner told me to undress, put on a paper gown, and sit on the chair so she could examine me. I told her that I was bleeding so much that I was going to need to sit on a towel. I remember her saying that she needed to check to make sure I wasn’t internally bleeding!! There ended up being too much blood for her to properly examine me but as soon as I told her how irregular my menstrual cycle was she immediately said “I think you might have PCOS“.

She then booked me into have an ultrasound the next day. There is no “test” to determine if you have Polycystic Ovarian Syndrome or not. The S in PCOS stands for syndrome, which means it’s a cluster of symptoms, or criteria, rather than one specific ailment. There are three main symptoms and if you have at least two, then you are considered to have it. The three determining factors are:

  1. Irregular periods
  2. Cysts on the ovaries
  3. An imbalance of the reproductive hormones (specifically high levels of testosterone).

After an internal ultrasound confirmed that there were cysts on my ovaries (in addition to irregular periods), I was officially “diagnosed”. After that came the fun part about learning about PCOS. Unfortunately it is not just the three symptoms above. Many PCOS-sufferers also suffer from:

  • Too much hair on the face, chin, or parts of the body where men usually have hair. This is called “hirsutism.” Hirsutism affects up to 70% of women with PCOS.3
  • Acne on the face, chest, and upper back
  • Thinning hair or hair loss on the scalp; male-pattern baldness
  • Weight gain or difficulty losing weight
  • Darkening of skin, particularly along neck creases, in the groin, and underneath breasts
  • Skin tags, which are small excess flaps of skin in the armpits or neck area

More serious health implications include the following:

  • Diabetes. More than half of women with PCOS will have diabetes or pre-diabetes (glucose intolerance) before the age of 40.4
  • High blood pressure. Women with PCOS are at greater risk of having high blood pressure compared with women of the same age without PCOS. High blood pressure is a leading cause of heart disease and stroke.
  • Unhealthy cholesterol. Women with PCOS often have higher levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol. High cholesterol raises your risk for heart disease and stroke.
  • Sleep apnea. This is when momentary and repeated stops in breathing interrupt sleep. Many women with PCOS are overweight or obese, which can cause sleep apnea. Sleep apnea raises your risk for heart disease and diabetes.
  • Depression and anxiety. Depression and anxiety are common among women with PCOS.
  • Endometrial cancer. Problems with ovulation, obesity, insulin resistance, and diabetes (all common in women with PCOS) increase the risk of developing cancer of the endometrium (lining of the uterus or womb).

Infertility can also be a huge issue because if you don’t get a period (and therefore ovulate) then you can’t really get pregnant super easily.

As soon as I was “diagnosed” my Catholic school-employed nurse practitioner prescribed me birth control. The hormones in the pills give me a monthly period. I will probably have to take them until I develop menopause. Birth control side effects and long-term use can be scary, not taking them can be even scarier because not having a regular period can increase your risk for endometrial cancer. During a normal menstrual cycle, the endometrium is exposed to hormones, like estrogen, which cause the lining to proliferate and thicken. When ovulation does not occur, which is typical in PCOS, the lining is not shed and is exposed to much higher amounts of estrogen causing the endometrium to grow much thicker than normal. This is what increases the chance of cancer cells beginning to grow.

I was so encouraged to write this because it is not a rare thing. In fact, two of my very good friends also have PCOS. IN FACT 10% of menstruating people do. However, there is not a lot of research or treatments for it – birth control is usually the only option. It would be GREAT if something that affects 1 out of 10 menstruating people could be delved into more, but for now all we have is birth control.

SPEAKING OF how dare people think that birth control is not a drug used to treat things. YES it prevents pregnancy, but it also corrects hormone imbalances and prevents me from getting endometrial cancer sooooo not sure why people are still claiming that it’s not medicine.

All in all I loved this article from Refinery29 because it made me realize that I am not alone in my “period-envy”.

 

 

Lots of people have periods, but there is also something distinctly “female” about it to me that makes me feel like I’m missing out?  My body is not doing something it is genetically programmed to do and it can be discouraging. BUT I’m trying to hopefully help some fellow PCOS peeps out and also help get rid of the stigma surrounding menstrual cycles – something that could stop someone from getting a proper diagnosis. I also used to be so embarrassed by it, but luckily with age I’ve grown more comfortable talking about it and realizing that NOTHING to do with the reproductive cycle is embarrassing.

For anyone feeling a bit down about PCOS here’s the great last bit from the article that I especially resonated with:

I can’t help but feel like my human girl starter pack was missing a few pieces. But, I’m learning to accept and embrace my imperfect insides, even though they don’t do cool things like sync up with lunar phases nor my close girlfriends’ cycles. ‘I know it’s eclipse season; I feel it in my uterus — you know what I’m talking about,’ a friend says to me. I earnestly don’t know. I wish I did, but it’s okay. I’m trying to focus my energy on appreciating the other spectacular things that come easily to my physical body, like natural muscular strength, perfect eyebrows, and multi-tasking like a boss.”

 

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