Intro to my blog and PCOS

My Personal Story, PCOS: The Invisible Heartbreaker

I have decided to start this blog to inform more people about Polycystic Ovarian Syndrome and tell you my personal story. If I can make one person aware of PCOS and what it can do to a woman and even her spouse (or other significant other) and family, then I’ve done my job. It’s not only an "invisible heartbreaker" it’s also an "invisible disease". You cannot see it from the outside and most of the time, from the inside either. It can take a long time to diagnose and most who have it, are usually otherwise, particularly healthy. PS: If you don’t want to read about female issues or something you think may be too much information for you, stop here. Don’t say I didn’t warn you.

Before I get into my story, I want to give you all a little background about PCOS. For those of you who don’t know what a syndrome is, it is a group of symptoms. You do not have to have all the symptoms of a syndrome to have it and that’s where it can become tricky. I will try to keep this in lay terms, but I am so used to medical terms from being in the doctor so much and working in the medical field. I am using some information from webMD to help me explain in a little more depth. Some of the symptom include the following:

EARLY SYMPTOMS:

IRREGULAR MENSES (Irregular Periods or No Periods): This can range from less than nine cycles a year (more than 35 days between cycles) to no menstrual periods. Some women with PCOS have regular periods but no monthly ovulation or irregular ovulation every month. This means the ovaries are not releasing eggs regular or at all.

HEAVY, IRREGULAR BLEEDING: About 30% of women with PCOS have this symptom.

HAIR LOSS FROM THE SCALP AND HAIR GROWTH (HIRSUTISM) ON THE FACE, CHEST, BACK, STOMACH, THUMBS AND TOES: About 70% of women with PCOS complain of these hair problems caused by high androgen levels.

ACNE AND OILY SKIN: caused by high androgen levels. (BTW androgens are male dominate hormones)

DEPRESSION OR MOOD SWINGS

Living with PCOS can affect your sense of well-being, sexual satisfaction, and overall quality of life.

GRADUAL SYMPTOMS:

WEIGHT GAIN OR UPPER BODY OBESITY: this occurs more so around the abdomen than the hips and is linked to high androgen levels.

ALOPECIA (Male pattern baldness or thinning hair): once again due to high androgen levels.

REPEAT MISCARRIAGES: The cause is not known. These miscarriages may be linked to high insulin levels, delayed ovulation, or other problems linked to the quality of the egg or how the egg attaches to the uterus.

INABILITY TO BECOME PREGNANT (Infertility): This is because the ovaries are not releasing eggs.

OVARIAN CYSTS

HIGH INSULIN LEVELS AND INSULIN RESISTANCE: which can include upper body weight gain and skin changes, such as skin tags or dark velvety patches under the arm, neck or groin and genital area.

BLOATING

BREATHING PROBLEMS: linked to both obesity and insulin resistance.

HIGH BLOOD PRESSURE

THE MOST COMMON REASONS THAT FIRST BRING WOMEN WITH PCOS TO A DOCTOR INCLUDE:

MENSTRUAL PROBLEMS

MALE-TYPE HAIR GROWTH (HIRSUTISM)

INFERTILITY

WEIGHT GAIN OR UPPER BODY OBESITY

There is no known reason what really causes PCOS, or I guess what causes the hormonal imbalances to cause PCOS. There is a possible genetic link, but nothing is certain. PCOS is a fairly "new" disease. Although it has probably been around since the beginning of human life, only in the past few decades has it become diagnosable and researched. Many doctors and nurses don’t even know what it is still, I can tell you from first hand experience. I’ve been into the Allergist office or at Urgent Care and when they ask me my medical history and I tell them I have PCOS, I’ve just been stared at. Eventually after a few mintues of staring at me and wondering what PCOS is, I finally explain it and they have told me they’ve never heard of it. It shocks me that a medical professional has no idea what it is! It also shocks me how many people who are not medical professionals know what it is. I know there are many things I don’t know about, but PCOS is so common.

PCOS is very common and many women do not know they have it and some will never know. It was once said that 1 in 15 women had PCOS, but now some studies I have read have shown that up to 1 in 8 women have it. Some women with PCOS can get pregnant easily, some will have a hard time and need help and some will never get pregnant. It’s a very emotionally exhausting disease.

Now just because you have PCOS, does not mean you will go through all of those symptoms and it does not mean you will never get pregnant. Many women with PCOS get pregnant with no issues, many are not so lucky. And I can promise you one thing, just because you come from a fertile family, does NOT mean you will be fertile and just because you have one child does not mean you will have another, or have an easy time. PCOS can start at any time, usually in the teen years or early adulthood. Typically, most women will be diagnosed between the age of 16 and 25. Now there is no medical research to support that, but they are just averages I have seen in my personal research.

PCOS is one of the biggest emotional rides I have ever been on. I can tell you, you must be strong to handle PCOS. You will sink or swim. If you are not strong before you are diagnosed, you will become strong, fast and your mindset on life changes. People who do not have PCOS will NEVER understand you and that is one of the most difficult things. People will act like they know what it’s like, but they don’t unless they are going through it too. It’s sort of like having a spouse who deploys to a war zone for a year at a time. People try to compare their husband’s week long business trip and say they understand. Maybe to an extent and yes something bad can happen anywhere at any time, but unless your husband has been gone, fighting in a war for a year and you don’t get to speak daily or even weekly, you will not understand. I will move on from that though, because this is not about, but for any of my fellow army wife friends, that is sort of what it feels like when someone says they understand even if they really don’t. Most people are sincere and want to understand and I appreciate it. A portion of the problem with people who do not understand is, they don’t know what PCOS really is. You must educate yourself about PCOS if you have it, so you can explain it to others. Some people don’t want to ask what it is, so I’ve found myself asking if they know when we talk about it and almost 8 times out 10, they don’t know. You have to learn to be patient with your friends and family, they really do mean well and really do want to support you.

Lastly, please be patient with yourself. I know this is hard as I am still learning to do this myself. Some days are easier than others, and other days PCOS seems like a life sentence. You have to try to have a positive outlook and I am still struggling with this as well. You will learn to be even more grateful for the things you have and you will wish others were as well. It will change your life and the outlook you have for life and family. You are forever changed.