Monday, January 05, 2009

Polycystic Ovary Syndrome (PCOS)

Not many people have heard of this disease, but it affects about one in 10 women. I was diagnosed with this disease about 8 years ago. My mother was reading an article in a magazine about PCOS and she suggested that I read it too. As I read the article, I realized that I had many of the symptoms of this disease. I went to my OBGYN to get tested. She ran a few tests and sent me to an endocrinologist for further testing. The endocrinologist diagnosed me with PCOS.

When people ask me why I don't have children yet, I tell them it is because I have PCOS. The usual response is "What is that?" It is amazing to me that this disease is so widespread but you never hear anything about it in the media.

PCOS is the leading cause of infertility in women. Since the media and medical community have been so neglectful of informing the public about this disease, I thought I would tell you about it myself. PCOS is a disease that causes a woman's hormones to be severly imbalanced. The hormone inbalance can cause any (or all) of the following symptoms:

* Few or no menstrual periods.
* Women with PCOS often do not ovulate.
* Heavy, irregular periods.
* Hair loss from the scalp and hair growth on the face, chest, back, stomach, thumbs, or toes. (PCOS causes high androgen levels which causes the hair loss on your head and hair growth in places you don't want it to grow. So you are hairy everywhere but your head. What a great look for a woman!)
* Acne and oily skin (and let me tell you, it is such a treat [she says sarcastically] to have skin like a 15-year old when you are 30).
* Infertility (and of course the guilt that goes along with infertility when you realize that you can't give your husband the children he so desperately wants).
* Weight gain and the inability to lose weight (I have struggled to lose weight for many years without much success).
* Repeat miscarriages (if you are fortunate enough to get pregnant. I have had one miscarriage myself and I have never gotten pregnant again.)
* Insulin resistance (pre-diabetes and Type II diabetes) which can also cause skin tags or patches of dark skin.
* Sleep apnea.
* Chronic pelvic pain (caused by cysts that sometimes grow on the ovaries - hence the name of the disease).
* Exhaustion or lack of mental alertness.
* Decreased sex drive.
* High cholesterol.
* High blood pressure.
* Depression and mood swings (and really, who wouldn't get depressed fighting all of these symptoms?).

PCOS is often misdiagnosed as some other disease. That is because there is no definitive test for this disease. Most of the time it is diagnosed by process of elimination. When I went to be tested for this disease, the OBGYN took 2 vials of blood for tests, then she sent me to the endocrinologist. The endocrinologist took 12 vials of blood for testing. Sometimes they even do a pelvic ultrasound to look at your ovaries.

There is no cure for this disease. There also really isn't much treatment for this disease either. The only thing doctors typically prescribe is a healthy diet, exercise, and Metformin to help with the insulin resistance.

My husband and I have been trying to have children since 2000 with no luck. I'm not giving up hope, but I have to be realistic. It isn't likely to happen for me, especially since I'm over 30 now (soon to be 34). My husband and I are going to be looking into adoption soon.

My reason for writing this post is so that when you hear a woman say she has PCOS, you will be informed enough to know that she is dealing with a difficult disease. Perhaps you can give her support and encouragement. You may also know women who suffer from some of the symptoms listed above. Tell her about PCOS so she can discuss it with her doctor (because most likely her doctor has never mentioned it to her).

Please join me in signing this petition to make sure that women are educated about PCOS and those women who have PCOS receive the proper healthcare and medications they need.

http://www.petitiononline.com/pcosweb1/petition.html


Orange Zinnia

Pink Rose

11 comments:

  1. Your orange flower is a zinnia.

    My daugther has PCOS, and her doctor told her I probably also do. I had a cyst to rupture when I was 18. I was under weight until the age of 36, but then gained, and cannot loose it. I have never been diagnosed with insulin resistance, but have no doubt I have it, have since I was 18 also.

    My daughter is now pregnant. started as twins, but now is only one. Her blog is www.articulateonpaper.blogspot.com and I do make comments at times about the grandson we are expecting this spring. She did lose a lot of weight right before she got pregnant. The drug was not an approved drug for PCOS (used for diabetes instead) so her insurance would not pay for it. Don't understand that at all. The benefits she would have gained for staying on the medicine would have helped the insurance company.

    I agree there is not enough info out there about this, and it is very wide spread.

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  2. Sorry to hear that you have this and I hope it gets manageable over time. I never heard of this until you posted it - it's good to be informed. You might help someone recognize symptoms in themselves.
    Beautiful flower photos!

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  3. Leedra,

    Thanks for the help identifying the flower. I'm pretty limited on the amount of flowers that I can actually identify. Congratulations to you and your daughter.

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  4. Thanks for the information. I had never heard of PCOS before. Based on the symptoms you have listed, I have a friend that sounds like she might have PCOS. I will mention your information to her so she can follow up with her doctor. Awesome!

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  5. Melissa - I completely understand your plight. I was diagnosed with PCOS over nine years ago. I was struggling with getting pregnant and kept thinking I was pregnant so my doctor ran tests and found out that it was PCOS. I had a miscarriage back in 2001 and it was five years later before I conceived again. Then a year later was surprised to learn that I was pregnant again. I was at the point of giving up hope when it happened for me. Now I have two beautiful boys that are a year and eleven days apart. I would like to have more children and will try again in about a year but like you I have to wonder if this is the best choice given the PCOS and I will be close to 35 then. My prayers are with you. I understand your struggle all to well.

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  6. I have PCOS. I found out after being married for three months. It was devastating.

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  7. Lindsay,

    I'm sorry to hear that you also have PCOS. It is frustrating and scary, but we can always have hope that God has a plan for us. It just may not be the plan we want for ourselves. We also need to never give up hope that we will have children someday. I know many people who have had children with PCOS, it isn't impossible, just more difficult. I will keep you in my prayers.

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  8. TAG! YOU'RE IT! but ONLY if you want to play. No pressure. Melissa, I tagged you in a game. You can see the rules at my blog. It is really easy to do and it's fun going back and reading what everyone posted. Only do it if you really want to. Thanks :O). Have a great weekend!

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  9. Alice,

    Thanks for tagging me. I will definitely play. I will locate the proper photo per the rules and post it this evening. I'm at work right now, so I don't have access to my photos.

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  10. Melissa, ... Hugs!

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  11. Tiffany Dearmond11:55 PM

    Hey, this is Tiffany.

    I have almost all of those symptoms. I actually had a doctor tell me she thought I might have pcos, but this was years ago...and since then it's either been because of money or no insurance why I haven't gone back to the doctor to have that checked out. It's nice to know I'm not just some freak of nature though. This has prompted me to really get back on the ball and get something done about this while I still have the insurance to do it.

    <3

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