The Undiagnosed PCOS

I am a woman living with PCOS. To be exact, I am the one in ten women living with PCOS. PCOS is the leading hormonal disorder among women of reproductive age and the main cause of infertility. I recently stumbled across an article in Health magazine (October 2009 by Harriet Brown and Kimberly Holland) that actually speaks frankly about it as one of the top 7 women’s issues that Doctors still miss today.

PCOS is most simply a woman having an imbalance in insulin (which regulates blood sugar) and causes the typical male hormones to have too high of levels (all women have them but in a woman with PCOS, they are higher). The abnormally high levels of insulin also “bombard the ovaries, causing them to produce too much testosterone and develop cysts. Half of all women with PCOS end up with pre-diabetes or diabetes.”

Symptoms include:
Irregular periods or none at all (check)
More hair on face, chest, back, and limbs (check)
Acne (check)
Baldness (thank goodness that’s not a check for me)
Rapid, substantial weight gain that seems impossible to control(triple check and check some more)

There is no conclusive test for this disorder but several small tests plus your symptoms can help a Dr. determine a diagnosis. “Check your reproductive organs for signs of masses or growths using a pelvic or vaginal ultrasound and physical exam. Blood tests are used to measure levels of glucose and several hormones; they also can exclude abnormalities, like hypothyroidism, that mimic PCOS.”

Unfortunately, there is no fix for PCOS. There are treatments that focus on the symptoms and help with fertility issues, limiting risk of diabetes and heart disease. “Birth Control pills help regulate menstrual cycles, lower androgen levels, reduce hair growth, and clear up acne. Metformin, which controls blood glucose and lowers testosterone production, can help you lose weight.”

Birth control has its own set of side effects and risks though especially after 35 years of age.

I have dealt with PCOS since puberty even before I knew I had it. Had I been properly diagnosed back then, I may have avoided some of the things I have been through in my life and been properly prepared for the fertility issues I faced. PCOS is very real and very painful (emotionally). PCOS can also trigger other issues like Chronic Fatigue Syndrome due to the hormonal imbalance. Being diagnosed with PCOS does not provide an instant remedy or even a totally confined diagnosis/path.

What really hit home about the article is that “More than 40% of women who are eventually diagnosed…have basically been told that they’re just too concerned with their health or they’re a hypochondriac.” What it forgot to say is that we’ve also been told “there is no reason, you are just fat because you eat too much. Quit putting food in your mouth and get off your lazy arse.” Yea, because in a body conscious society when you are trying every diet known to man and nothing is working, a comment like that is going to help.

We have been stigmatized, made fun of, struggled and defined by something most of us didn’t even know we had. I’ve become a stronger person since being diagnosed. I know more about my body then I ever hoped to (with much more to learn) and I have found a passion to share my knowledge with others and teach my children so they do not suffer from ignorance.

Knowing is half the battle. Arm yourselves with knowledge and help others get the tools to fight. Through information, proper diet, modern medicine etc. we can help ourselves and others to be prepared and live with a brighter future. Pregnancy does not fix PCOS and nothing I do will ever make it go away.

Friendships in my Life

It’s hard letting friends pull away and have their space, even when they need it. I’ve had many friendships in my life and I’ve lost very few. I’m one of those rare people who hold onto a friendship truly through thick and thin. I have had three best friends through most of my life. After college two of those moved away and for years we continued the friendships through email, occasional visits etc. One of them drifted and now we get the occasional email once a year when we one of us is thinking of the other but for the most part we don’t really know anything about the other’s life. She’s never met my husband and I don’t know if she has children.

The other friend moved back and we recently went through a very tough patch while I was dealing with the loss of my child and she was dealing with undiagnosed Post Partum Depression. Individually we moved on but the friendship is in a weird place right now but there have been tentative feelers thrown out from each party to see if the other is receptive. We are working on it.

When I married, I made a new friend and for years she was one of my rocks as I was hers, but through a bitter separation and even odder reunification within her own marriage, the friendship between us became forced and uneasy and we both let it become a casual comment on Facebook and a hug when we run into each other thing.

I’ve developed fabulous e-ships and a network of amazing women that share both online and offline moments with me. Babyshowers, tacky sweater parties, etc. Sometimes those friendships too hit a rocky place though. It’s very difficult when you share for so long a struggle with someone, a trait that binds you even in the most horrible circumstances, and then one of you “moves on.” I’ve watched and supported many women moving on and it was one of the most difficult things I had to do. I mourned the loss of my child every day that I saw the other girls progress in their pregnancies. I cried tears of happiness and mourning when another’s child was born when our due dates had been shared. I’ve watched these precious little beings grow and everyday it’s a reminder of what Bumblebee would be doing now, the milestones he/she would have passed. Even being pregnant and looking forward to this new life, it doesn’t take the pain away from what once was my future.

Now, I’m the one who has moved on. Everyday my fear and anxiety are still very real that something is going to go wrong but at the same time I’m also able to laugh about the small things (like craving apples) and enjoy some of these little moments. Some of my girls can’t share that with me and it breaks my heart for them. I have to let them have their space and I know that’s what they need. I’ve been there so I absolutely do not want to be “too much” by checking in too often but at the same time, I’m not always sure when its been too long and I should step in and say “hey, haven’t heard from you” or “you’ve been quiet lately.”

It’s such a fine line to walk between caring and sensitive to being a reminder of what they want. I know that they need their space and my condition can be difficult for them sometimes. Because I’ve been there, and I truly understand what they are going through both on the infertility front and the being left behind front, it plagues me that I can’t BE more support. If I could fix it for you all I would. I love you and empathize with you that much and I am continuing to hold a place on my friends list for you for when you “catch up” because I believe that you all will. Even to those e-friends who aren’t as close or are going through other trials in their life right now and have drifted for the moment, I’m always here to listen, to support and to love you. Whether it is the occasional cup of coffee and chat you need from me, or hours of Facebook conversation to take your mind off of a bad day.

I’m here and I just want to remind each of you (online and off) that I’ll never forget or move on from my past. From the years of struggle and heartache. They are with me forever and no matter where I am in life, I will always understand where you are coming from and love you no matter what. I will always be an advocate for fertility education. The women I have met and bonded with over the past few years will always be a part of me no matter where my journey takes me.

PCOS Symptoms During Pregnancy

Let’s dispel another pesky myth the doctor’s tell you: PCOS symptoms lessen during pregnancy. BRRRRUUURRRRRNNNNNTTTTT (my best guess of spelling that annoying buzzer sound).

The only PCOS symptom that has “disappeared” for me is the crazy non regular periods with heavy clotting and cramps. Well DUH, I’m pregnant; I would HOPE that had disappeared. What they FAIL to tell you is that all those other symptoms that are taboo to discuss increase.

Oh yes, my dears, if you think you had some stray eyebrow hairs before (aka on your chin), be prepared for a full on BEARD during pregnancy. That delicate mustache you insist on calling peach fuzz? You can now give Yosemite Sam a run for his money.

Now I, personally, have always had extra thick hair and great nails and pregnancy has definitely enhanced those traits. My nails are gorgeous, my hair is lustrous and growing long and my skin, while a bit oilier, is actually clear for the most part.

Did I mention I now have to tweeze my boobs though? Go ahead, reread. I’ll wait.

Done? Okay. I have a feeling; it won’t be too long before I have to shave my stomach. (and you thought the boob statement was going to be the worst! HA). There is now hair growing on every inch of my body I think. Shaving the ladybits has become a lesson in HEDGE trimming and sapling sawing. If it was a forest before, it’s a jungle now and frankly I’m too darned lazy to care a whole heck of a lot.

Plan on shaving those legs every day too. I used to be able to get away with every other day but that went out the window about 3 weeks ago.

Needless to say, while you are struggling to eat healthy, trying to stay awake, keep your balance and not look like a frumpy ragamuffin everyday, you also get the extra bonus of looking like a sasquatch! I’m not complaining, I just don’t want you all to be disillusioned about what lies ahead.

My darling husband has been kind enough to offer to teach me to shave my face on numerous occasions as I hog the bathroom mirror EVERY night hunting those chin hairs and using wax strips. Not helping darling.

Fat Girl Bumpology 101

It’s no secret that I am a large girl. Amazonian in fact. If you can’t tell by my pictures, I’m fat. I’ve always fought my weight since the onset of puberty (now we know why, thank you PCOS). What you may not be able to tell is that I am also 6 foot tall. So the word large is not at all a foreign word to me. To be an overweight woman, I do carry my weight well (I’ve even had Dr.’s tell me that so I’m not delusional here people.)

I think there are of course stigma’s and myths associated with being an overweight pregnant woman though. First, anyone and everyone who has read What to expect When you are Expecting has probably had it ingrained in their heads that it is a malicious thing to do to a future child to get pregnant while overweight by even a pound. That book is hateful. Second, if you do get pregnant, you are surely going to have complications and Gestational Diabetes and Pre-E etc. So what about those girls that “didn’t know they were pregnant?” Well let’s talk about those because that ties into this whole myth thing.

Obviously, as a larger woman you are told not to gain much weight while pregnant. Your body will not starve the baby if you aren’t eating for two but will use some of your fat deposits for energy. SCORE! So based on this information and MTV you automatically go into pregnancy thinking you will never show, never have a bump and if you are lucky at 32 weeks or so, your fat will round out and you will for a few weeks look like you are pregnant before giving birth to a baby elephant (or having the baby fall out on your shoe, take your pick). NOT TRUE.

I chose to get pregnant while overweight for many reasons. 1) I am 32 years old with PCOS and struggled for 3 years to get pregnant with meds. 2) My dr. deemed my body healthy and capable to carry a child with little problem. 3) My physicals came back normal. I did however, struggle to be as healthy as possible which included quitting smoking and losing 44 pounds. I was absolutely confident that I could maintain my weight and be healthy during pregnancy.

BWAHAHAHAHAHA. Lies, lies and more lies. I have seen a specialist and I am at a higher risk for GD and Pre-E but just as much so because of PCOS than because of my weight. Put the two together and wa-la, greater risk. I have tried to maintain my weight diligently and did great…until this week.

As soon as second tri hit, it was like a light bulb went off in my body and BAM, instant pooch. Here’s what happens when a fat girl “pops” (though I highly doubt it can be considered a pop but for lack of better terms, lets go with it). Ready?

Your fat pokes out. You can’t tell you are pregnant unless you know someone intimately. Sure enough though, that pooch, roll, gut, whatever you want to call it, is rounding out, getting hard and STICKING OUT THERE but not in a cute bumpish sort of way. More like a “I just ate 20 cheeseburgers from Mickey D’s sort of way.”

I could possibly take a picture but I’m not sure there is a way to take it without losing some of my ego and/or grossing anyone out with a picture of my fat encased in jeans. I have a feeling that my idea that I could go to almost 30 weeks without maternity clothes was probably a pipe dream at best. I’m not sad I am showing after all, but it is kind of disconcerting as a woman who has always watched her weight to see a two pound scale difference but what appears to be a 15 lb difference in my clothes. I am in my FAT GIRL jeans overnight! You know, those jeans I kept from when I was 44 lbs heavier as a reminder of what I was? Yea, I’m wearing those today. They are still falling off my arse and bagging at the hips, but not very loose in the stomach. My regular jeans still fit but are way too uncomfortable when sitting. I went for comfort.

So to all my fat girls out there, be warned. Your bodies don’t do what we think they are going to do and I can imagine if I’m showing now, this could get really awkward here in 20 weeks. I’m imagining Shamu tossing on a beach while children laugh and point.

To all you skinny huzzies, don’t snicker behind your computer screens, because your bodies can do funky things too and I hate you. Just kidding. I don’t. I would love to have a beautiful bump and not look like a beached well. Bravo for you for keeping fit and trim!

Eating for PCOS

Let’s talk about PCOS. Not everyone is fluent in the acronyms and disorders of Infertility. They may know what it stands for but not what it does. Hell, even I don’t understand what all it does and I have it! I’ve talked about the individual drugs but lets talk about what they are trying to treat, because right now they are treating the symptoms, not the disease.

What is PCOS? Quite simply it is a metabolic disorder that affects 5-7.5% of women. The number one cause of infertility.

What are the risks? Endometrial cancer, heart disease and diabetes.

What happens? To break it down, it messes with the balance of hormones in your body throwing your body into chaos and the natural order of it into a malfunctioning time bomb. New research shows that insulin is one of the key hormone players that it screws with which causes all the other hormones to be out of whack. Insulin is released by the pancreas in response to food (like carbs). It acts as a vehicle to get the sugar out of the blood, into the muscle, fat and liver cells to use as energy or store it. Women with PCOS have a defective system. Imagine it is a Toyota. Over acceleration causing mass pile ups, government summits, recalls and investigations but so far nothings being done but bloating and expansion of problems. That is your body with PCOS.

Facts: 50-60% of PCOS sufferers are obese. Losing even 5% of body weight can lead to an improvement of symptoms. They try low calorie diets that usually consist of high levels of carbs which are their enemy and GAIN weight. A more apt diet plan would be a low glycemic index diet but few people know that if they haven’t been diagnosed correctly.

On the proper diet, you will have decreased cravings, increased energy levels, better skin and more regular menstrual cycles. HOW GREAT WOULD THAT BE? Well, I happen to know its true. I still fight with carbs but I go after foods that are unprocessed and I’ve dropped a lot of weight. Just look at my McFatty Monday posts! When I do go for carbs I never eat them alone. I combine them a protein or fat. (cheese counts, so stfu). I drink a TON of water and have reduced my intake of red meat.

If you are suffering from some of the symptoms of PCOS or have been diagnosed here are some suggestions for you: (but I recommend doing the research and talking to your doctor).

*Select foods that are unprocessed like bran cereal, whole grain breads, fresh fruits and veggies, lean meats like skinless chicken, olive oil, low fat milk and fish.

*Exercise regularly ( I get a big fat fail at this).

*Take a multivitamin with minerals including at least 400 mcg of folic acid

Positive PCOS Foods
Red Grapefruit-reduces cholesterol
Vegetables
Chilli-aids in insulin resistence and weight loss
Fiber/Fibre-controls blood sugar
Vinegar & Pickles-reduces spikes in blood concentrations of insulin and glucose
Cinnamon-the MHCP in it lowers blood glucose levels
Blueberries-increases sensitivity to insulin
Raspberries-ellagic acid is an anti-cancer agent plus they have vitamin c and soluble fiber
Calcium-involved in eg production in ovaries (www.diabetesincontrol.com)
Good Protein- lean chicken, beans, cheese, eggs, fish, milk, yogurt, veggie burgers
Ginger-anti inflammatory agent
Acceptable Carbs-whole wheat breads and pastas, bran cereals, fruits, vegetables, yogurt
Good Fats- avocado, cheese, eggs, hummus, nut butters, oil-based salad dressings, olive oil

Stay away from refined sugars and white pastas.

Clomid Day 1

Today is supposed to be the day we start back on Clomid. I had decided due to recent financial strains, that we would put off TTC as much as I didn't want to. Then last weekend happened and my hopes were so high as were DH's.

He really doesn't want me putting off TTC, but I'm trying to be responsible. Honestly, all the things that can go wrong is scarying me to death on the tail end of a m/c and the allergy attack.

I had a mild allergic reaction last night, to my blessed Subway. Same sandwich at the Same location I always get. So there is one of two things that cold have happened:
1) They were busy and were not changing gloves between sandwiches so their gloves could have been contaminated by another food.
2) Something had mold in it (since I have a known mold allergy). This seems more probable to me.

The first thing I noticed was my lips went numb, and then the end of my tongue. My chest got blotchy red and then my face started turning pink. Then my stomach started rolling and my throat got a little itchy and I started coughing. I did manage to stay calm and took a swig of liquid benedryl which promptly knocked my arse out within 10 minutes. I slept through everything else.

This morning my face felt hot but wasn't red so I just drank A LOT of water and I feel okay now. Chest feels a little tight today but I stayed calm and the benedryl kicked it. So that's good.

Not so good when I'm thinking about taking Clomid. Does NOT help the decision. I've been putting it off because I know my husband doesn't want to talk about it. It makes him upset but its tonight or never. We have to discuss this.

I honestly don't know what I want to do. TTC and deal with it as it comes or wait. AGAIN. On one shoulder is a voice saying: You have waited over three years through your struggles of TTC, don't put it off now. On the other, You have waited this long, its not like its going to matter since you will never have a kid anyway.

What to do, what to do.

PCOS

For S.-it’s early, keep charting, stay calm, find inner strength and peace. Prayers for you.

PCOS
What it is: Hormonal Imbalance can lead to diabetes and heart disease (which my doctor said I am at risk for after my blood work). Typically the small amount of hormones most associated with males, is produced in larger quantities.

Symptoms:
Weight Problems (insulin levels get out of balance due to hormones)-while not an excuse it explains a whole lot. It is murder to drop weight but I have no problems packing it on eating LESS then what everyone else does!
Extra Facial and Body Hair-Uni-brow anyone? Extra eyebrow over my lip, course patches of whiskers on my chin, a goody trail over my lower abdomen that doesn’t point to anything at all as its not in a line, the most recent favorite, those three long black hairs that appear above my shoulder blades (SEXY BABY, YEA!). I spend quite a bit of money on waxing, bleaches, VEET, and razors.
Acne-I do not have BAD acne but I have constant tiny clogged pores and black head with random mountains and horns that sprout all over my body at the most inconvenient times.
Thinning Hair on the scalp/dandruff-I do have issues with dry scalp and a place on the back of my head that I feel is thinning but my hair is so thick its hard to tell.
Irregular Periods-Have always had irregular periods since a teen often going MONTHS without a period and then having a painful, clotting, mess for 2 weeks.
Fertility Problems-I’ve been TTC for over 2 years. Until Clomid, my charting had shown maybe one possible ovulation in over six months. Who knows how long it had been since I had truly ovulated.

Why Me?:
PCOS is hereditary. In my family I know of two females in my generation (1st cousins) who have it. Of those two, one had two children when she was very young, and the other has resorted to adoption. Recently learned that the next generation also has one confirmed case of PCOS. We are not sure who we inherited it from as previous generations have all been supremely fertile (6 children or more) that we know of and we have a pretty extensive genealogy thanks to the hobby of one of my cousins. A few of my aunts show classic symptoms but they all had multiple children (3-4 each) starting very young. Maybe that is my biggest problem is that I did not start trying till I was 29.

How I was diagnosed:
During one of my horrible periods complete with clotting and pain so bad I wanted to die (or more accurately go to the hospital for morphine which I had done before), my regular OB could not see me so I saw a PA. She asked me several questions, did a pelvic exam (which if you have never had a pelvic exam while bleeding and clotting heavily, it is completely uncomfortable embarrassing and unpleasant. It makes a regular PAP look like a walk in the park on a summer day. If I could have crawled in the drawer under the exam table, I would have), gave me a preliminary diagnosis and ordered blood work to confirm.
Aftermath:
I will admit, since I did not know much about it at the time other then a few mentions of the acronym on BOTB, my world shattered. You would have thought they had told me I would have to have a hysterectomy or something. (I’m a bit of a drama queen sometimes). So through the tears and nerves I proceeded to do a follow up with my regular Dr. who wanted to try Clomid and wanted me to follow up my Bloodpressure etc with a regular dr. I have since found a regular family Dr. (as I didn’t have one before) but I have only been there Once.
What does this bring to my life? Frustration, mad charting, Clomid, increased exercise, constantly working on improving my eating habits and making better choices and I was able to quit smoking for good. It’s been 5 months since I have had a cigarette. I do drink a bit more now though *wink*. (not really, I’ve never been too much of a drinker).
How does my story end? I don’t know, I haven’t given up completely yet. For those of you who are having difficulties, I pray that you are not one of every 15 women who have PCOS. I pray that no matter what comes your way, you have strength and courage to get through it. If any of you ever need to talk, please feel free to contact me. I am always here for you. My cousin (the one who adopted) gave me one of the most heartfelt long discussions about her journey and what would happen to me as I sat in my car and cried in my Dr.’s office parking lot. She prayed for me and told me how she had made it through. I’ve found strength in that and while we never have had the best relationship, I have counted her friendship through this and her strength as one of my saving graces through this ordeal. Thank you Renee. I admire you so much in not only your faith and strength but for turning your ordeal into an opportunity of love in adopting your beautiful babies and providing a wonderful home to countless foster children.
It is my turn to pass on my story and hopefully provide knowledge if not hope and faith for someone who reads this.