What is PCOS?

So what exactly is PCOS and why are you blogging about it? I’m sure that’s what most of you are thinking. I wanted to take a quick second to talk about something besides “this military life” and about something that has a great impact on mine and my husbands lives.

PCOS refers to Polycystic Ovarian Syndrome, a disease in which a woman’s ovaries are covered in small cysts. Not only does this disease give you serious fertility problems, some symptoms you might have are a 50% chance of miscarriage, excess hair growth, acne, diabetes, obesity, increased risk of heart disease, increased risk of ovarian cancer and endometrial cancers, and lovely skin tags. There is no cure for this disease, yet it affects 1 in 10 women of the reproductive age and girls as young as 11. It’s silent, and often your fears of the disease are hushed by incompetent doctors.

My story with PCOS begins this way and for my male readers, you’ll have to excuse the TMI. I started my period when I was 13. I’ll never forget sitting in the movie theater watching “Titanic” and being SO INCREDIBLY uncomfortable and in pain, and soon I realized why. Since the age of 13, my periods were extremely infrequent. I had one every 2-3 months, sometimes longer. Growing up people always said I was lucky, when in fact I’m really not. If you’re not shedding your lining each month, it sits there and builds up…causing you to be predisposed for endometrial and other female cancers. Not good. I even went so long without a period once, they had to give me medicine to “induce” menstruation. Not fun.

I had described my pain and problems to my OBGYN who dashed the problem with “just stay on birth control. you’re too young to be operated on.” So, at 19 years old, after 6 years of no answers and refusals…I decided to step up and see a reproductive endocrinologist. It was tough for me to make the decision to go, seeing that 99% of the patients he saw were trying to conceive. I was 19 and unmarried and just wanted answers. They ran tests, and came back with no PCOS but a low progesterone level, inovulation, and cysts. I knew deep down that I had PCOS, but the testing back then was quite different than what it is now. Back then, they diagnosed by blood tests…now they can just look at your ovaries and count the cysts to determine. I love my fertility doctor/RE. He’s an incredible man. They told me I would have trouble conceiving and to just come and talk to them again when I was ready to conceive and they would go over my options with me. I was bummed. I left feeling less of a woman, but was re-assured by my boyfriend at the time. Plus, I wasn’t looking to be a mom anytime soon…so what did it matter for now?

Then, a couple years later it started to bug me. I couldn’t go to baby showers or be jubilant when people I knew were pregnant. Somewhere inside of me it pained me and stung. The thought that I might never be a mom hurt really bad. After doing some volunteering with my doctors’ non-profit organization for fertility, I decided to have additional tests run to see if there could be a confirmed diagnosis. After 11 years, I still wasn’t regulated. Birth control hadn’t helped. I needed a definitive answer. So, flash forward to March of 2009 and I was finally diagnosed with PCOS. It was a relief to finally know and know I wasn’t crazy. At the same time, more research had come forward and in my findings online…I was scared. Now I was at the age where the thought of baby wasn’t too far off. At 19, it wasn’t something to worry about…but now at 24…it was different. This was real.

Now I’m married and soon to be 25. There is nothing more I want in this world than to be able to give my husband the ultimate gift of a son or daughter. He wants children so badly. He, like me, has longed for it for as long as he can remember. So, we are in the trying phase. (as much as you can be living apart) He is fully aware at the struggles that may lie ahead. The trying. The failing. The pills. The injections. The timing. The IVF cycles. The miscarriages. The money. Yes, those are all potentials, none of us know what will happen…but that’s the real possibility. Did you know that ONE SINGLE CYCLE of IVF costs no less than $10,000??? That’s out of pocket. And, there are on guarantees with IVF. You don’t get your money back. It could take 3, 4, 5 cycles…or more to get you there. When do you say enough is enough? Most insurance agencies and employers do not cover the costs of fertility treatments. One thing that really needs to change. There are some incredible “fertility friendly” companies that will cover costs of cycles and things like adoptions. The Army will cover fertility medicines, but does not cover or assist with IVF. They do have IVF centers at hospitals like Walter Reed, but I don’t forsee the hubs and I going the IVF route anytime in the next 2.5 years while he’s still Active.

I can appreciate the positivity from people. I consider myself to be a really positive person, and while the husband and I are in the trying phase…I AM going to reassure myself that it WILL happen. However, just like us Army wives do not appreciate civilians comparing their lives to ours without our husbands…the same goes for women like me with PCOS and people who don’t have it. I know everyone has good intentions, but yes…I am aware that anything can happen. Thanks for the reminder. I am aware that I could try and it could just BAM happen. I hope it does. But I’m also VERY aware of the negative factors standing in my way. They are very, very real.

My reasoning for bringing this to my readers’ attention, is because PCOS is a very real and painful disease…both physically and emotionally. Infertility is not an issue that is discussed among many circles. It is often embarrassing and misunderstood. With the fact that 10% of all women have it, you might just know someone who has struggled or is currently struggling with infertility issues, like PCOS. We didn’t bring this on ourselves. We didn’t ask for it. We were born with it and there is no cure. We pray, night and day that a miracle will happen and someday…we’ll all be moms. We pray that once we are pregnant, the baby stays with us so we don’t have to endure a miscarriage or yet another.

There have been a number of incredible, amazing stories of women having children with PCOS. I hope and pray that someday in the future I am one of them.

Please visit:
THE FERTILE DREAMS ORGANIZATION
FERTILITY C.A.R.E.
SHADY GROVE FERTILITY
PCOS ASSOCIATION