September

September is a very important month. Not only is it our wedding anniversary, the start of football season (Go Broncos!) and the beginning of Fall, it is also PCOS and Ovarian Cancer Awareness Month. 

I have been trying to write a post about PCOS in between football games and anniversary trips but have not been very successful in doing so until now; last minute, of course. I wasn't sure what I would write about because I didn't want to write something too informational and scientific; instead I wanted to share my story and how I came to find out that I was a "cyster".

Growing up I was always teased about my "Adam's apple" and my hairy arms. I remember thinking that something was wrong with me because I felt like I was more "manly" than the other girls in school. I remember I phoned a "boyfriend" one night and when his dad called him to the phone he said "Some guy is on the phone for you"; I was horrified! I sounded like a guy?! I was told a couple of times that I had a deep voice but I didn't think that meant I sounded like a guy!

My mom got so pissed at my older brothers and sisters when I was little because they all made fun of me about having hairier legs than them. They embarrassed me so badly that I started shaving my legs before the third grade. But, the ridicule didn't stop there. When I was dating a guy he asked me if I would think about shaving my arms! I did! I had such hairy arms that I had to comb the hair down. It was long, dark and thick. I hated it. I still have hairless arms and I wouldn't grow it back. Ever.

When I was in the 7th grade I got my first period. I don't really remember the first period or when I learned to use a tampon, instead of those gawd awful pads, but I do remember that my period was never regular and that more often than not, it was heavy, clotty and lasted forever! I remember hearing some boys say "If it bleeds for more than 5 days and doesn't die, don't trust it!" and thinking to myself "Oh my gosh... I am really a freak. I hope no one knows that I bleed for 7 days; I will never have a boyfriend!"

When I first became sexually active I thought that I was pregnant every month! I remember buying pregnancy tests and praying to the Lord that they were negative. Although, there were those few times that I prayed I was so that I could "keep" the boyfriend, but that is a different post. By the time I was a young adult I had given up on worrying about becoming pregnant and I figured that I was just "lucky" that I didn't have to have a period every month.

In my late teens I had many annual exams and I had my first "irregular" result when I was 16 years old or so. Over the span of the next 10 years I had several irregular pap smears. I was freaked out the first time and thought that I was going to die from an STD. However, my doctor reassured me that it was probably just irregular due to irritation caused from intercourse or the possible onset of menstruation. I never once had any further testing after those results so I figured that I had nothing to worry about.

When Mike and decided that we wanted to kids we knew that I needed to see a doctor. Some how, some where, some time, along the way, I learned that irregular periods didn't mean that you were "lucky"; that "irregular" meant there was something wrong. I won't lie- at 27 years old I didn't have a friggin' clue about ovulation. I had no clue what an ovulation predictor kit was! I just knew that women were suppose to have a period EVERY month! I wasn't. Mike was the one that urged me to see a doctor when my periods were almost three months apart and I wasn't getting any BFPs. I am so glad he did.

I wasn't diagnosed with PCOS until February of 2012; I was 30 years old. Even though I knew nothing about PCOS, I was relieved to finally know that there was in fact something wrong with my body, and that it wasn't just me, and I wasn't meant to be a born a boy! Phew! I was relieved to hear the doctor say that my irregular periods, unwanted facial and body hair, thinning scalp, bloated belly and skin tags were all related to this thing called PCOS. Polycystic Ovary Syndrome.

At first, I was relived and then I was mad. Mad that my mom and my doctor brushed off the irregular results so easily without further research. I was mad that I was so close to knowing what was wrong with me yet it took 17 years to find out. I was angry that we didn't catch this syndrome a long time ago so that today we could get  might get pregnant easier. I was mad that by waiting to address the PCOS and hormone imbalance I was put at higher risk for heart disease, type 2 diabetes and annovulation. I was angry to hear that I would need more fertility meds to increase my egg production and that those medication could increase my risk of ovarian cancer.

Polycystic Ovary Syndrome is a serious disorder that needs to be addressed. There is no single test to diagnosis PCOS, however, there are common symptoms to look for including but not limited to: missing periods, unwanted hair in unwanted places, lack of ovulation, weight gain, inability to lose wight, high cholesterol, high blood pressure, belly fat, and pelvic pain. 

PCOS left untreated can cause diabetes, heart attacks, sleep apnea, anxiety/depression, obesity, endometrial cancer, ovarian cancer, breast cancer and infertility.

Women with PCOS are highly encouraged and recommended to eat low carb, low sugar, low fat diets that are high in fiber and protein and get plenty of exercise.

Our bodies are designed to work in a certain way, women are created to produce eggs and men are to produce sperm. Women should have a menstrual cycle every 28-30 days (or close to) and we should be able to detect ovulation once per month. If you don't, then I strongly urge you to seek medical help. 

                                                              courtesy of YouTube

                

Ovulation and PCOS

I've decided to try and explain why ovulation is so hard to detect for women who have PCOS and use ovulation predictor kits to determine ovulation. I have gotten some questions about my testing habits and I do want to say that I normally only test once a day, but I had purchased a month supply of OPKs that needed to be used within 30 days, so I tested a couple times a day for a while. Typically I test once, in the afternoon, with several different brands. I only do that because I am obsessed and I don't trust any one brand.

Anyway, PCOS and OPKs; here's a short break down:

PCOS, or Polycystic Ovarian Syndrome, is one of the leading causes of infertility in women. Approximately 5%-10% of women of childbearing age have PCOS. Most women with PCOS don’t even know that they have it. In fact, less than 50% of women with PCOS have actually been diagnosed. 85% of women who suffer from PCOS suffer from infertility as well. Most women do not get a diagnosis until they begin trying to get pregnant. Some of the symptoms of PCOS may be overlooked until a woman starts trying to conceive a baby. Symptoms include, but are not limited to: unwated hair growth, fine or thin scalp hair, obesity, skin tags and missing periods.

PCOS is a medical condition that affects women’s menstrual cycles, fertility, hormone levels, and physical appearance. Women with PCOS produce high levels of insulin and higher levels of male hormones or androgens.

During the first half of a normal menstrual cycle, several follicles will develop. Each follicle contains an egg. As the menstrual cycle continues, only one follicle will remain. This follicle will produce the egg during ovulation. Once the egg has matured, LH levels will surge causing the egg to burst from the follicle. This is when ovulation occurs. However, the excess male hormones produced with PCOS affect the production of female hormones necessary for ovulation. A woman with PCOS does not produce enough hormones to cause any of the follicles to mature. They may grow and collect fluid but none become large enough for ovulation. If ovulation does not occur, progesterone will not rise.

 

Because hormone levels are affected with PCOS, predicting ovulation can be difficult. Some women with PCOS; including myself, usually have an anovulatory BBT chart. If we do ovulate, it may be very difficult to interpret the BBT chart. PCOS may also affect the results of ovulation prediction kits. OPKs work by detecting LH surges. Some women with PCOS have elevated LH hormones making it difficult to use an ovulation prediction kit. OPKs actually warn consumers on the box that the reliability of the test my be compromised if you suffer from PCOS, or use fertility medications.

Can't I Catch a Break??

Man, I must have done something really bad in my past life (and or current life) to be handed this stack of cards. I have to go in for a minor surgery tomorrow. I mentioned in my previous post that I have had some low back and tailbone pain that has been getting worse. Today, I went to the doctor and sure enough, I have another pilonidal cyst on my tail bone (right between the cheeks). Last time I had to go under anesthesia to have it removed. It was the size of a golf ball! My doctor thinks they will be able to cut it open in the office and drain it; but he wasn't sure. We will find out tomorrow at 1:30pm. 

This was the first time seeing Dr. R. He will be my new PCP. I have yet to find a doctor that I really love. I am not saying he was not a good doctor, and that I won't end up being really happy with him, but this visit was pretty specific and we didn't have time to get into much detail about my health history, or the chance to "get to know one another", he is more familiar with my butt crack then my last name at this point. He wants me to come back in the summer. We will do a full lab work up and we will discuss them, my weight and my PCOS at that time.  Yep, my weight. I tipped the scale today at 200.2 pounds. I f*cking hate PCOS!!!

Well, thats all. Time to go take my meds.

Wish me luck.

Fact or Fiction

I promised myself I wouldn't blog tonight. I was going to wait until tomorrow, after the results of my progesterone test was in; so that I didn't just ramble and so I actually had news to share, but, sometimes, I am unstoppable.

I learned something today at work and I wanted to share it.

If you follow my blog, you know I have PCOS. My acupuncturist, who doubles as my boss, has been doing a lot of research on PCOS since she has seen an increase of patients battling infertility with a PCOS diagnosis.

She had some articles that talked about ovulation and detection of ovulation in women with PCOS. She says that women with PCOS will always test positive with OPKs because of the elevated LH levels that stay stagnant in the body. This I knew. But, she had an article that caught my attention and it was something I did not know!

When I ovulate I always feel side ache pains. They are deep and low. But, I also experience uterine pain. I have always thought that meant my period was coming, so for the next 14 days or so I waited for AF. This article says that women with PCOS may experience uterine cramping during ovulation; that the cramping mimic those of a menstrual cycle.

As I looked back in my notebooks I see that every ovulation I had the same symptoms; uterine cramping being one of them! I started feeling the uterus cramping on CD 19-20. I know I ovulate late on my own, but with Femara I am pretty sure I ovulate on time, or at least pretty close. The ovulation pains, which feel like sharp, pulling sensation, have been continuous on the left side since CD 15, maybe even 13. The last time we did injection treatments and had a follicle check before triggering. I told the doctor that I thought I was going to ovulate from the left side since that was where all my pain was. Well, I was wrong. The left side had zero follicles and the right ovary had one 19mm follicle. My left ovary is just a bit enlarged. Anyway, I found it interesting that all this time I thought I was imagining this pain, that it was all fiction, but it turns out AF and ovulation pains are very similar. Lesson learned.

The other thing the article talked about was stress. It said that spending all your time thinking about and worrying about the number and size of follicles, or Estradiol levels, we should be focusing on the desire. It mentioned belly massage over thought. The act of doing something rather than over thinking things seemed to produce positive results. So next time you start to worry or stress over numbers, stop. Start massaging your belly while focusing your energy on the desire.



Thanks for reading through my rambling.

You've Got Mail

I started this blog for myself and for close friends; that way they could follow along with us through our journey to parenthood, and so I could keep it off  Facebook (for the most part). Today however, I got an email from someone, a stranger, that saw a thread I left with a link to my blog on a status update regarding Hugh Jackman's battle with infertility.

This is what she said: (no editing has been done!)

'One of my friends shared the link to the Huge Jackman story about infertility and I saw your comment. I checked out your blog and found it refreshing...I have PCOS and have been struggling to get pregnant for a few years. I just wanted to say thanks...thanks for publicly expressing how I feel. It reminds me that I'm not alone!' ~A.M.W

And another one! 

"You certainly have a way of describing things in simple terms so that us peons can understand. I didn't realize how diverse the entire infertility world is as far as medications and treatments available. I know that you will find something that works and when it does, you'll be blessed with a child that you'll love that much more. All your blood, sweat, and tears will reward you in the best way imaginable. And thank you for not using a bunch of big words." ~ MAK

What can you say?

Today my sister told me that after browsing my Pinterest boards she was no longer talking to me about PCOS or baby making related topics. She said it is like walking on eggshells. She doesn't know what she can or can't say to me about it.

Boy, is she right. Well, kind of. Not really. But, maybe a little.

It's not that it's a "touchy" subject, it is just that people who are not educated on the two topics tend to give the right advice at the wrong time. I  know that expressions like "it will happen" or "don't worry" are positive and meant to be inspiring, but when said at the wrong time those three simple words cut like a knife. I can't speak for all people battling infertility or PCOS, but I can speak for myself, and when I hear those words I find myself wanting to shake the person while crying out "NOOOOO, it won't! It's NOT that easy!".  People who battle with infertility usually have been fighting to get pregnant for months, even years!  So, even if it may happen, we don't want to wait anymore, we want to be pregnant NOW! Don't take my disgust with the phrases personally. It's not personal. It's infertility frustration.

Please, don't get me wrong. Each day I am grateful that I have so many people in my life who are rooting for us, and who are trying to keep us positive. I can't imagine what it would be like to feel all alone in this battle. I am glad I won't ever have to experience that empty, deserted feeling.

I hope deep down my friends and family know that. I hope they know that I appreciate their cheers, prayers, and hopes, that they send our way daily. 

Going through infertility and PCOS is a hard, painful road. I am sure that some where on this road we will find our child. It just won't be easy.

I told my sister that there are things to say and things not to say. She told me that I needed to make sure I posted those things on my updates, so people knew what they were allowed to say.

My sister.

She is funny.

I love her wit, and her smart ass sense of humor. I can always count on her for a laugh. I know that if I really needed a shoulder to cry on, she would be there. She might be there cracking jokes, but I know she would be right there. I know that deep down, she understands this suffering I am going through, and I bet she would wish it away if she could, even if she won't admit it. Right, Sis? ( I know you will read this!)

So, in short here are a list of things you can/should say:
"I admire your strength"
"I can't imagine how difficult, frustrating, upsetting this must be for you"
"Any child will be lucky to have you as parents"
"We love you"
"It's okay to feel hurt, or upset"
"Don't give up"
"So does the doc have your whoo hoo memorized?"
"You inspire me"

Things NOT to say:
"It will happen, just relax"
"Go to church"
"Pray"
"Just go on vacation and get drunk"
"Are you sure you want kids, you can have mine"
"Let nature"
"A friend of mine once...."

DON'T SAY THIS either.... 
A guy came into our office the other day and we started talking about fertility- not sure why.  He told me that I needed to have my cards read. He said that he and his wife were having problems too, so they had a reading done and one card said they needed to "fertilize" the earth. So... he said he went outside and did his biz on the ground and that month she was pregnant. WTF. First off, I don't want to hear that, or see you gesture "doing your biz", second... its gonna take a lot more than a card reading to get me pregnant.

You get the point?

Momentary Breakdown

I put my head in my hands and bawled. I held my face and asked God "Why? Why can't I feel that joy? Why don't you think I deserve to be a mother?" 

I am not sure if it's related to my hormones, the lack of babies in the house, or the post holiday blues, but something is getting to me.

I was browsing Facebook this morning and I saw that a friend of mine had her baby boy right before Christmas. She started trying long after us. Don't get me wrong, I am happy for her, but there is a bit of anger that fills my body and soul and it is not directed at her personally, but it is there. I seem to experience it any time someone is able to conceive so easily.

You can see the love and excitement on her and her husband's faces when they look at that beautiful newborn baby; an excitement and love that I am ready to experience. But, it is not happening, and, unfortunately, I don't think it will happen anytime soon.

Our circumstances have changed just these past few weeks. I had to have a tooth pulled, and I will need to get an implant. Since dental insurance sucks, we have to pay a large portion of that out of pocket. Unfortunately, that means we have to dip into our "fertility bank". So, we are going to have to postpone the IVF we had planned to do this Spring/Summer. That decision was a hard one to make, but we just can't bring ourselves to get to far into debt. So, first things first.

Maybe I am blue because of that decision as well. It's hard to have to put a major dream on hold. A dream you have worked so hard to achieve. For now though, I will continue to stay on the birth control. I do notice that my moods seem to be a little more "predictable" now that my cycles are exactly 28 days, for the first time in my life!! So I guess that is some goos news. It is even fun to have a little "ohhh la la" time with my husband without any pressure; just pure fun! I think he enjoys it too.

I wonder sometimes if I should consult the doctor about doing another round of injections, since the IVF is on hold. We can afford that right now. But then IVF would have to wait until next year.... I think I just feel like I need to be doing something! My husband keeps trying to remind me that we are doing something and sometimes that means taking a long road with a few detours. I love how he keeps me sane and tries to keep me upbeat and positive. He is my light in this darkness, for sure!

From here on out I need to remember that even though others have an easier time conceiving, there is a chance that we WILL be parents one day. Where there is a will, there is a way.

"I bet that gets expensive"

I decided I would post a  rough estimate of our fertility costs. People always ask us how much it is costing us out of pocket, since the insurance doesn't cover any infertility treatments (You don't want me to to get started on insurance and diagnosis; that is a whole different post in itself!), or remind us how expensive it is. We know. Some people save for a vacation, or a new car. We save for a baby. I am currently having some teeth problems, and I asked my mom "What do I do? Put money in my mouth, or uterus!" Haha!

Here is the breakdown--this will explain what we have done to this point and what we face next. Hang on to your seats!

To date (remember this is rough estimate, I am going off memory here!)

June 2011- Surgery to insure there was no endometriosis, made sure tubes were open and clear, cleaned out uterus and checked for cysts.
My cost: $2,500
Insurance covered $ 10,000

July 2011- Started clomid 50 mg days 5-9
My cost: $6.00 for meds, $150.00 follow up ultrasound

August 2011- same as above

September 2011- Clomid 100 mg
My cost: $12.00 for meds, 150.00 for ultrasound

October 2011- Clomid 150 mg days 3-7
My cost: $15.00 for meds, $150.00 for ultrasound, and $120.00 for lab work

November -Feburary-- Rest cycles. We tried naturally here... and my cycles went back to 34- 56 days apart!

Feburary-- We were referred to a RE in Eugene; Dr. Austin. He diagnosed me with PCOS and explained what it was to me. (I should go into that in another post!)
I started taking Metformin. I started with 1,000 mg a day, and now I am up to 1,500 mg. I don't even know I am on it. I don't have any side effects. Rarely.

March- Started Femara, 5mg, days 3-7
My cost: $5.00 meds, $120.00 lab work
We went to Vegas in March, and I tested positive for ovulation on day 15!!!

April- Same as above + $450.00 for ultrasound, ovulation on day 17

May- Same as above + IUI 
My cost: $375.00 IUI, $150.00 ultrasound

June- Rest cycle. My period went from 31 days to 43 days

July-- Injection series
My cost: $600.00 for the meds, $300.00 lab work, $150.00 ultrasound, $375.00 for the IUI

August- #2 Injection series
My cost: $700 for the meds, $300.00 for lab work, and $450 for the ultrasound

September- today--
Rest cycles- I am currently on birth control to keep my periods from going haywire again! BOO!

Our future plan:

IVF in the Spring/early Summer

• Charges are for the following:
• Visits assosiated with IVF 
• Ultrasounds during injections and retrieval/transfer
• Hormolnal mointoring (lab work)
• Embryo development, care and transfer
• ICSI
• Anesthesisa
• Supplies( surgery pack)
• Retrieval room
• Doctor Fees
• Sperm processing
• Embryology lab
• Transfer supplies
• Transfer room
• Cryopreservation/ 1 year storage
• Sperm Analysis
• Hysteroscopy
• Lab
• Pap Smear
• Meds

Total: $8,000- $12,000

 Important Notes About IVF Cycle Costs

• Insurance does not pay a dime on anything infertility related
• We have a HRA account with a balance of $4.000 that will go towards the medication price
• Additional FET if the first transfer fails is $1,500 dollars more + meds
• There is no guarantee. We could spend the money, go through the process and still end up with no baby!

You can read all about IVF here: http://www.womenscare.com/home/wc1/page_868


Well, there you have it!

Feel free to ask me any questions- I am happy to answer them.

Best,
Teresa