Thursday, August 16, 2012

PCOS and Me

I've been wanting to get more active in an organization or cause for awhile now. While Chris and I aren't necessarily "trying hard" at having a baby, I thought about looking into groups for infertility, but it just didn't feel right yet. Out of nowhere, all these groups started appearing on Facebook and I was finding blogs about PCOS... and I thought, "this is something I HAVE." It just felt right.

So today, I thought I might share my story and struggle with PCOS and some facts about it. First one: Did you know 1 in 10* women have PCOS? Someone you know (or you) might be affected by it. (*depending on the source, some say 1 in 5, other range from 1 in 10, 1 in 15 or 20% of the population.)

What is PCOS?
Polycystic ovary syndrome is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregant. PCOS may also cause unwanted changes in the way you look. If it is not treated, over time it can lead to serious health problems, such as diabetes and heart disease. Polycystic ovary syndrome (or PCOS) is common, affecting as many as 1 out of 15 women. Often the symptoms begin in the teen years.The symptoms of PCOS are caused by changes in hormone levels. There may be one or more causes for the hormone level changes.PCOS seems to run in families, so your chance of having it is higher if other women in your family have PCOS, irregular periods, or diabetes. PCOS can be passed down from either your mother's or father's side. 

What are the symptoms of PCOS?
(Quick Symptom Check List courtesy of Power of for PCOS, brochure link below.)

• Family history of infertility, irregular periods or diabetes
• Early puberty (first period at 11 years or younger)
• Use of medications for depression, bipolar disorder, seizure disorder, epilepsy, or migraine
• History of gestational diabetes
• ”Apple shaped” body (you gain weight more in your waist than in your hips)
• Dark velvety patches of skin on your neck, groin, or in your armpits
• Hair loss or male pattern bald spots
• Difficulty losing weight
• Intense cravings for carbohydrates or sweets
• Problems conceiving
• Decreased sex drive
• Excess hair growth on face, chest, or back
• Acne on face, chest, or back
• Mood swings that are not completely explained by the environment/situation

So here is my check list:
(Brochure for Professionals courtesy of Power of for PCOS, brochure link below.)

  • When was your first period?
    • I was 10 or 11 I believe.
  • When was your last menstrual period?
    •  Ha! Um, maybe two years ago? (That one lasted over a month!)
  • What is your current height?
    • I’m 5'7"
  • What is your current weight?
    • Not ready to publish that quite yet... let's just say... more than enough.
  • Do you believe that you are perimenopausal or in menopause?
    •  I don't think so. Certainly hope not!
  • If so, what symptoms are you experiencing that lead you to believe this?
    •  Been diagnosed. (See story below.)
  • Have you had regular periods consistently throughout your life?
    • No, maybe 1 or 2 a year... IF that!
  • Do your symptoms (that you are here for) change in any way according to your cycle?
    • Yes.
  • Has your menstrual flow become lighter/much heavier than usual for you?
    • Always very, very heavy.
  • Have you ever gone more than two months without a period?
    • All the time.
  • Do you have skin that is dark or thick, especially on the neck, groin, underarms, or skin folds?
    • Yes.
  • Do you have any skin tags, teardrop-sized pieces of skin usually found in the neck area and/or armpits?
    • Ugh, yes... hate them!
  • Have you or any family members had bipolar disorder, an eating disorder, epilepsy, or migraines?
    • Migraines... me and family.
  • Do you take any psychotropic medications? (antidepressants, mood stabilizers, etc.)
    • Supposed to be on antidepressants (see post below.)
  • Have you ever had trouble getting pregnant?
    • In all technicality, Chris and I have been "trying" since 2004.
  • Has your sex drive decreased?
    • Has it ever!!! Poor husband.
  • Do you feel you have excess hair growth? Where?
    • My leg hair grows at a ridiculous rate, I feel like Chewbaca. Beginning to have a few sprigs of black hairs on cheeks (that I pluck religiously) and also heavy peach fuzz on my face (for years.)
  • Do you feel more irritable than usual?
    • Pretty much all the time.
  • Have you lost/gained weight recently without your eating/exercise habits changing?
    •  I began the weight gain in 4th grade (around the period start) and it seems no matter what, I gain (I have on diets before!)
  • Is it hard for you to lose weight or maintain a genetically healthy weight?
    • Yes, yes, yes, yes!!!
  • Do you have more mood swings than you used to?
    • Constantly, ask my husband!
  • Do you have severe acne? (if adolescent) or adult acne?
    • Not too bad, but yes.
  • Is your waist to hip ratio greater than 0.8?
    • Um, probably?
  • Have you noticed your hair thinning or hair loss?
    • Not thinning yet, but I always have at least a handful of hair come out in every shower!
  • Do you have strong cravings for sweets or carbohydrates?
    • Constantly! I love me some carbs.
  • Do you or any family members have a history of PCOS, insulin resistance, diabetes, hypoglycemia, gestational diabetes?
    • Not sure if anyone has PCOS... but all the others... yep!
  • Are you experiencing any other symptoms (emotional, physical, cognitive) that you feel may be related to hormones or your cycle? (or lack of one)? Describe.
    • Probably. I'll just answer this in my story section, below.
  • Has your memory/focus/concentration changed recently?
    • Very much so. Sometimes it drives me mad!

My struggle with PCOS:

As I mentioned above, my first period came around age 10 or 11. (If there ARE any male readers, you might want to quit reading. Girly stuff, you know.) After that, it was few and far between, spotting even. Finally, around age 13 or 14, my mom took me to see an OBGYN. Awkwardly enough, he was the same MAN (yes, man) who delivered me back in good ole' 1984. He did diagnose me with PCOD (same thing, just disease instead of syndrome) at that time. He brought me and my mom into his office and showed us under the microscope the "fern like" qualities of the sample he had taken (which was very helpful.) He sent me home with Provera and Birth Control (more than once.) I was also taken to an endocrinologist who said I had hypothyroidism and was given synthroid. (I quit taking that sometime in High School and stopped seeing that doctor. Not sure why.)

Oh, and he also threw in the fact that I most likely would never be able to have children. Can you imagine how hard that was to hear at such a young age? I went to him for several more years and as he grew more toward retirement, I grew more unhappy with him as my doctor. At one point, forgetting he had diagnosed me with PCOS I suppose, he even had the nerve to say "she must be pregnant if she isn't getting a period" and then skirted around his words when the test came back negative. Finally, one day, we received a postcard saying he would be retiring and would no longer be seeing patients. It hadn't been that long since my annual and it was almost time for me to go to college, so we didn't find another doctor right away.

While at A&M (my first and only year) I did see a nurse practitioner on campus because of severe pain I was in. Didn't like her either. She was more focused on testing me for STD's and getting a pregnancy test because I indicated I was sexually active, than listening to me about my diagnosis of PCOS. When I moved back down there later that summer (after leaving school) I really didn't take care of myself. I didn't want to go through the hassle of finding another doctor and going through the same old tests and talks again. I believe I saw two down there. One was nice, but simple, for better lack of words. He was the first who told me that PCOS wasn't necessarily a 'red light' on the baby front and told me I should have no problem at all getting pregnant. I was given Provera for the 548145616th time in my life (okay, in the 5 or so years since my diagnosis) and birth control and sent on my way. I did this was several different OBGYN’s… I couldn’t even begin to count how many I have seen! I either didn’t like them or they moved or I moved or something. Such a mess!

I've always hated taking medicine so I never took my pills like I was supposed to. Besides, I didn't notice them helping at all, so I didn't care. I went to two more OBGYN's and they did the same thing. They all said the same thing. It was getting old. I went to the ER a couple times with severe ovarian pain, which always led to the same answer (after hours of waiting and testing)--- you have cysts on your ovaries. No kidding, huh? After time, I’d have the severe pain and vomiting and would pretty much learn that a cyst was most likely rupturing and it’d feel better in a day or two. I had a long span of no insurance, so I quit going to anyone. I’ve become very accustomed to dealing with the symptoms and side effects.

Once we moved back up here and had insurance again, I tried to get better about my health- I had gallbladder surgery and it kind of ‘woke me up’. I went to a Family Doctor who ran all sorts of tests and this time, said I did not have hypothyroidism but did have some anemia issues. I found an OBGYN I loved (but hated the office staff and long waits) who put me on a medication (fairly new at that time for PCOS) called Metformin. She told me I absolutely could have children, but it would most likely take a lot of work and help. I liked that answer. Didn’t seem sugar coated, but not entirely hopeless. It went well for awhile, but soon, I was promoted at work and found myself pushing back all my appointments because I was catching up and organizing and… just never went back. Another stint of no insurance came again. That’s when I had my last period (about two years ago) and it was insanely heavy, thick clots, and lasted for OVER a month! I was scared, thinking surely this wasn’t normal, and luckily, a woman in my church (who has a clinic) got me back on the Metformin. I didn’t want to “use” her though, so I quit taking it after the prescription ran out. (She’s helped us so much, I can’t begin to describe what a blessing she is!)

Once we got insurance, again….  I found a new physician who was top rated in fertility. He questioned my diagnosis (now a 10 year diagnosis) of PCOS and had to do his own testing to make sure. Guess what he concluded? Yup. I DID have PCOS! I wish I could have seen my “you don’t say” face. He gave me the Provera and the Birth Control and rushed out of his office. I was confused. Aren’t I going backwards? So the next appointment I asked him, why I wasn’t on Metformin. He said there was no need. The next couple of appointments went about the same. He seemed in a hurry, didn’t even remember me and had to refresh his knowledge of my history over and over again. Needless to say, I didn’t go back. After that, I just kept putting it off. Then Chris lost his job and we’ve been needing insurance ever since.

Some days I am in so much pain, I don’t know if I can stand it. I worry, really… more than I should. I know untreated it can cause other problems and for whatever reason there was a span of dreams I had about Ovarian Cancer.  A woman randomly called me at work to ask about the Food Pantry and began telling me out of nowhere, about her friend who had Ovarian Cancer. I saw ads and promos for Ovarian Cancer Awareness. It was everywhere! I’ve had some subtle and not so subtle changes (not going into all those) and so one day… I WebMD’d it. Don’t do that, I tell you- trust me. I should have known better. I don’t think about it anymore, because I know it was just me being silly and right now, with no insurance, what am I going to do? (Should be getting some in a month or so!!!)

Nearing almost 30, I really want to get this straightened out. Not only in my life (financially, etc…) but my health. The thing that angers me most about PCOS is that I need to lose weight to help get pregnant (just to get fat again, hehe), but it’s a challenge because I have a disease that makes it difficult to lose weight. How is that even fair?

There is so little awareness about PCOS that I really want to educate myself more on treatments, diets, supplements, etc… I want to help myself and help others, because this is so difficult sometimes. I don’t want other teenage girls to be told they won’t ever be able to have a baby. I want people to know the doctors to go to (myself included) where PCOS is understood. I’m solely beginning a journey to getting this on track. We are about to begin making better food choices and walking. I’m looking into a 5k for PCOS awareness in September (walking, not running!) I even purchases a ribbon necklace yesterday… to remind myself that I can fight and win this battle.

If you think you or someone you know is being affected by PCOS, I encourage you to do your research. Here are some helpful links that I referenced above. Please also check out one of the blogs I follow (listed to the right.) Megan, author of “In This Wonderful Life” has PCOS and outlined her journey to getting pregnant. How uplifting it is to hear of someone’s success, through struggle!

Great Information is found here with links to Private Facebook Support Groups:

Here is the direct link to the Informational Pamphlet:

Direct link for the checklist you can take to your doctor:

Here’s the pendant I purchased yesterday, got the last one! But she has great awareness jewelry:

The PCOS Foundation also has great information:

The link to the Houston 5k Awareness Walk/Run (I’m doing this one if Dallas doesn’t host their own):

Until next time! Blessings!

No comments:

Post a Comment