SEPTEMBER-----PCOS Awareness month!!

September is PCOS awareness month. I am going to be posting pictures on Facebook for different facts about it. I also go another tattoo, this one has a lot of meaning. Not only is it teal but you will see.

I can look at this every day and remind myself there is hope for this. There is hope for me to reach my dreams and hope for all my cysters out there that are fighting this daily battle with me. So wear teal every day this coming month and make yourself knowledgeable of what we are fighting with so when we have our down days you understand and when we are flying high achieving our goals that you are our rocks, our strength and our biggest cheerleaders! We need all of our family and friends to help us, its a daily struggle.

Lost

Losing the one thing that I have ever dreamed of having was something that I can't express in words. I'm broken. I have tried to heal from this loss. All I'm good at is hiding the pain. I dream of who that child would be, who they would look like, would they have my crazy personality and passion for life? Honestly I will never know. It crushes my heart. I thought I would be fine with not trying again and moving on with life without my own children. Now 5 years later, I want that again but where do I start.

My weight has always been an issue. I've never been a skinny girl, always overweight. I've tried diet, exercising, diet pills, fasting, name it I have done it. No matter what I did the weight never really came off. Sure I've lost a handful of pounds and was able to keep it off but it always came back. I've always have been self conscious about it. I need to get this under control in order to move forward with trying again. My primary care provider is knowledgeable and great. I love her but she doesn't know the ins and outs of PCOS and what it entails. She referred me to endocrinology. Talk about a wait list..2-3 months before I am able to see anyone. I didn't want to see just anyone, I wanted to see a provider that is very knowledgeable about PCOS. I scheduled an appointment for the end of this July but I got called in June to come in, someone had cancelled their appointment. I got in a month early.

My questions for my endocrinologist, were how do we get my hormones in check, how can we get this weight off, and what can we do so PCOS doesn't control my body. I didn't want to get my hopes up again, because they always come crashing down. In fact I had no hope at all. I've lost all hope a long time ago. Meeting with Kathy was so amazing. She talked with me in depth about my experiences and what I have tried and failed and what was successful for me.

Before meeting with her, I was already on Metformin, which is prescribed commonly for those who have PCOS and it helps with the body's way of producing insulin. It can be a tough drug as there are a lot of GI side effects. I have been on Escitalopram for my depression and anxiety. I'm also on Trazodone so I can sleep at night. My fasting labs for glucose were higher but not really out of control. My Hemoglobin A1C (looks at your glucose over a few months) was 5.9, slightly above but not bad.

Kathy talked about diabetes, which is very common with PCOS. She asked if I would be ok with being labeled with diabetes (DM) type II. It didn't shock me at all, in fact I saw it coming. Kathy is concerned of my weight, which again has been a struggle for me my entire life. She wanted me to take a more aggressive approach to weight loss. Explaining to her it doesn't come off. I'm always hungry, my brain is doesn't tell me when I'm full, which is one of the symptoms of DM. Kathy wanted to recheck my A1C and a couple other labs including Vitamin D.

Kathy prescribed Bydureon, an injectable medication I would give myself once a week to help with DM. At first I was skeptical of it working for me.  This medication would help reduce my hunger and tell my brain that I'm full and hopefully this will help along with diet and exercise to reduce my weight. So I feel like I'm a medicine cabinet. Not only I'm still taking my current medications, she added Bydureon and multivitamin. Depending my lab results there might be more.

I left my appointment with HOPE that this with her help I could conquer this disease. I completed my labs and met with her a few days later to get the results. One of the benefits of working in a clinic is that I can access my own chart and check the labs before she tells me :). All my labs came back good, my A1C never moved so that's good but my Vitamin D test...well lets say that I bombed it. I had a very low count. I was probably 6-10 times below the normal range. Kathy added Vitamin D a mega dose twice a week to my regimen. One thing she explained to me is that vitamin and mineral levels in our bodies need to be in good ranges to help with conceiving. She wants me to be taking vitamins to help my body work the way I need it too.

After starting to take everything I have been prescribed, I started noticing my body's reaction to the Bydureon. OMGGGGGGGGGGGGGGGGGGGGGGGGG, where has this been??? I can not, I repeat CAN NOT eat what I used too. I'm so full all the time. Carbs, sugar and no longer being craved. To the date I've lost 28.9 pounds since (June 20th). I'm noticing I can work out longer, I can walk faster and I have more energy (thanks to vitamin D). I am not advertising medications. In fact I rather not take them, however I have been off of everything for a long time and feel I have spiraled downward. I know I need them to help level my body out because my body is not normal. It doesn't work like everyone else's, can we say THANK YOU PCOS (no sarcasm at all lol).

So right now, weight loss is my journey. My goal is to drop 100 pounds. I have a great circle of family and friends to help encourage me and kick me in the butt when needed.

Dreams

My dream is to be a mom. I want children, I want to experience pregnancy. With this horrible disease the chances are lower. I felt like I was stabbed in the heart. I began to slowly sink into a depressive state. I felt worthless, felt like a failure, and I sure didn't feel womanly. I don't think my husband at the time knew how to support me. I didn't know how to even support myself. We were quiet about this. I didn't tell many people.  We decided to go through fertility treatments. I was referred to the fertility department.  After more tests I learned I had hyperplasia. Yay!! More horrible news. I had biopsies done and they were the worst thing on the planet. I rather have cysts rupture. I'm not kidding.

Hyperplasia is the uterine lining is thick and can lead to endometriosis. This was a set back. I had to take medication for about 6 months before we could even start. The provider I was referred to basically told me I needed to lose weight. He wasn't really nice about it. I told him I'm very aware and I have been doing everything I could.  This is the provider who did my biopsies. The last one he did he did a "mini d n c" is what he called it. Where I was paralyzed in pain. I couldn't walk. I was so beyond mad. He shouldn't had done that with out asking first. Needless to say he doesn't work at the clinic anymore. I then transferred my cares to another provider. She was optimistic that I would be able to conceive on clomid.

By the way I never mentioned anything about insurance coverage. Did you know none of what I've gone through is covered by insurance companies. It's all optional. Hmmm.  I didn't ask for this. It's funny how they cover something's and not others. Insurance is a whole other topic.

Now back to clomid. What this consisted of was taking a medication of cycle days 5-9. You would then go in and have a vaginal ultrasound, sometimes once and sometimes twice. It would also consist of blood tests. I did this for 6 cycles. Each and every time I was told it wasn't  working. All this did for me was send me spiraling down. After 6 I told my husband I wanted to stop and just adopt since all we were doing is gambling money away. This is where my marriage started to fail. He didn't want to adopt. I'm not going to get into much about that just that we both added to the problem and I knew I would be better off apart. We ended our marriage after a year or so later.

I focused on weight loss and getting into better habits. At its time I gave up hope and thought adoption would be the way to go. I was good with that. I buried myself in work and living my life. I was put on metformin which helped with the insulin issue and norethindrone to help prevent hyperplasia. I buried my feelings of PCOS. Every time someone I knew became pregnant, I was honestly happy for them. But at the same time it was a stab to my heart. I would cry behind closed doors and begged god to let me have my chance.

I met the love of my life eventually and he knew about PCOS. He understood what it involved. He was all for adopting as well as trying to conceive. In 2009, I found out I was pregnant.  I was so ungodly sick over the 4th of July and went in. They said I had a bug and ran a pregnancy test just for fun. I got a call the following business day to be told I was pregnant. I laughed. I thought she was joking. She told me to take prenatals and would refer me to obgyn.  I went in and everything was going well I was about 5 weeks along.  I was so happy. I couldn't believe that my dreams were coming true. I decided not to tell anyone. I even kept it from my boyfriend. I had to find a way to tell him. Of course once he found out he wanted to tell the world. I wasn't ready. I didn't want to tell anyone.  We did end up telling immediate family.

About 3 weeks later, my dreams came smashing down. I miscarried. I'm to this day devastated. I decided to quit and not even try anymore. I was done. I was ok with that.

The beginning

I wanted to find a way for me to help heal myself and educate others about this silent horrible disease, PCOS, polycystic ovarian disease.  It Sounds horrific doesn't it? Here goes nothing. Mind you it is taking everything I have to open up about my journey. Please ask questions, I'm more than willing to tell you what you want to know.

I believe my journey started way back when I was 16. I knew something wasn't "right" with me. I mean I never had a period. I just kept thinking it would happen. My mom told me some girls start late. So I didn't panic yet. A couple years passed, and I took myself to the doctors to be put on birth control because I still hadn't had my wonderful period. They just put me on bc and sent me off.

I also had struggled with my weight as a kid. I was active but always putting weight on my midsection. I had acne crazy. Once I graduated high school and started college I was able to drop some weight but not nearly what I wanted. I t continued to be a struggle. I had the acne under control, as much as I could.

During this time I had not known anything about PCOS or it even existed.  I had been going to college and met my boyfriend at the age of 19. We ended up getting married  18 months later. I had went off bc because we knew we wanted to start a family. Everything during this time was ok. I had my period but not regularly. After a year of trying I made an annual appointment with a resident dr. To this day I will never forget her name or how amazing she was. Dr. Martha Binn met with me and I told her all my issues and she said without skipping a beat that she wanted to run a couple tests and do a pelvic ultrasound. She had a strong feeling she knew what was wrong but wanted those tests.

So tubes of blood drawn and an invasive ultrasound was completed. I was scared, I didn't know what to expect or what the results would show. Little did I know that this was the start to being poked and tests being done all the time. When the doctor called me herself to make an appointment, I knew it wasn't good. My follow up appointment was nerve wrecking. I had PCOS. what is this? The doctor gave me some information and support group information. I left the clinic in tears. My life and dreams had officially changed.

Many of you may not know what what PCOS is.  Polycystic ovarian disease is inherited but it's really unknown, researchers say.  It doesn't matter what parent it came from to me. The easiest way for me to describe this to someone that doesn't know is that it screws your entire body up, your endocrine and hormone systems especially. PCOS also affects heart, blood vessels, and your appearance. Not every woman diagnosed has every symptom. I am a classic case with almost every symptom. My ovaries have tons of cysts. They are just fluid filled. They don't just go away. They can rupture and  the pain brings me to my knees.

It also causes you to be insulin resistant. Which means your are not diabetic but your body doesn't use insulin like it should. It can lead to diabetes. I am also over weight not by a little but by a lot and most of it is around my midsection where women with PCOS carry their weight. It also makes your periods nonexistent or very irregular, which is me. I have the acne and oily skin that goes along with this. I also have hirsutism, increased hair growth on face, chest, abdomen, back, thumbs, and toes. I also have a lot of skin tags. I have depression and anxiety issues.

That's a shortened version of what PCOS is. So I did my own research. I learned that some of the women in my family had struggled with conceiving.  No one in my family has been diagnosis except for me. So what does this all mean to me? This means if symptoms are left untreated it could lead to infertility, heart disease, and diabetes. So to most people I just look fat and don't know how to control my weight. Boy, they are so wrong. It's a huge struggle.  This is just the beginning......