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What is PCOS?

January 19, 2010

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

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18 Comments leave one →
  1. January 19, 2010 11:55 AM

    I want to add a positive comment, I have MANY and I stress MANY friends who have dealt with PCOS and have had healthy children (notice I said children). I do have a few friends who have dealt with infertility as well but I want to give you hope!

  2. January 19, 2010 6:45 PM

    I have PCOS as well! I’ve actually had 2 children completely naturally, but before I struggled with PCOS a ton. I was overweight, borderline diabetic, maybe 2 periods a year, high testostrone & androgens…it was awful & embarressing, especially the physical weight gain, hair growth & acne. I finally have my under control but I have to be VERY careful, I have to watch what I eat & I have to work out. I know that if I don’t the way my PCOS affects me I will put on the weight that I’ve worked so hard to loose. Anyways…keep your head up! Everything happens for a reason, I refuse to let PCOS define who I am as a woman!!!

  3. January 19, 2010 8:21 PM

    Wow, Shannon. I never knew this something you may have to struggle with. I will pray that it will not be a long struggle and you and mike have a beautiful healthy family. I am so glad that we were able to become friends. (((Hugs))) from NC !!!

  4. January 20, 2010 12:37 AM

    I too suffer from PCOS. However, I hope my comment will ease your mind a little bit. The process will work like this. The military will require you to ttc for one year unsuccessfully (this counts miscarriages. If you get pregnant and miscarry, your year will start over). Once you have been unsuccessful, your PCM (primary care manager) will refer you to an OB clinic. The OB will then go over your option and more than likely prescribe Clomid and Provera (all covered by Tri-Care). After that doesn’t work successfully for a few a months depending on the OB, he will then move to the next option.

    I was told that IVF is covered by tri-care as long as you have met all the criteria and have tried unsuccessfuly to conceive. Its a process and it will take awhile. The best thing to do is always remain positive. I know its hard. I just found out 2 years ago.

    As soon as you get to Fort Hood, see your PCM, he may skip the year of waiting but that just depends. You aren’t technically infertile (even with PCOS) until you have tried for a year.

    good luck!

  5. sam permalink
    May 26, 2010 11:33 AM

    i just read ur blog i understand wat u goin through i started my periods at the age of 10 but never been regular took me to tell my doctor that i had pcos for him to send me for test i lived with no signs of periods for up to 8 months at a time i tried everything to birth control to sort them out also i have to take tablets to slow them down when i get them so i share ur pain i hope all goes well with u all the best xxx

  6. Miranda permalink
    July 13, 2010 2:16 PM

    i’m a 19 year old girl…and at the age of 13 i was dignosed with PCOS. i dont like this. it really makes me mad. cause its really caused me some problems. and the fact that i want kids, and may not be able to have them, upsets me, the one and only thing i wanted in life was a family, and i may not get that…so to all you girls that has PCOS, im here for you, stay stong, dont get upset over this, cause in the end, everything will be okay.

  7. smilingldsgirl permalink
    December 15, 2010 12:49 PM

    I think it is great that you started uncovering things at a young age. I am nearly 30 and am finally starting with the endocrinologist for my PCOS. I guess we all have our journeys. I hope you have success with yours.

  8. February 13, 2011 1:41 PM

    Thanks for sharing. Women really need to be informed of this disease!

  9. Crystal McCubbins permalink
    June 4, 2011 10:06 PM

    This post really caught my attention. I am 20 yrs old and just got diagonosed with PCOS just a couple weeks ago. This is something I have had for awhile but for some reasons doctors have never found it till now. Now Me and my husband are trying to have a baby but is hard and they have me on a medicine called metformin that the frist week was miserable. I never even knew about this disease till recently. I wish more people knew about this disease cause it have badly effected me and wish it would have been found sooner.

  10. erika arballo permalink
    August 29, 2012 6:38 AM

    I was just diagnosed with PCOS and have your blog very comforting. Thanks for sharing your story and best of luck to us all living with PCOS.

  11. shannon permalink
    October 15, 2012 10:27 PM

    I feel like your story is exactly what happened to me. I found out at 17 that I had PCOS after virtually no periods my entire life. I felt so odd not getting it since its a part of every young woman’s life. I was put on birth control and told that I may need “assistance” getting pregnant when I am ready. Now I am 27 and engaged and very worried about not being able to have a child. Its so upsetting. You read tons of stuff and get no where. Good luck with your journey.

  12. October 19, 2012 8:11 AM

    I know how you feel, I got diagnosed with PCOS almost twelve years ago when I was 22. I knew that I had it or something wrong since I started my period at age 9. When I would have a period it was extremely painful and last sometimes six weeks or longer. I got hospitalized a few times for loosing to much blood. They would last that long and go 6-8 months without another one or longer. When I found out that I had PCOS my husband and I were trying to have a baby. It was like a bullet hitting me in the chest. I also found out that I had cervical cancer at the same time and was told that the PCOS combined with the cancer that I would have a 98% chance of having a baby.
    Well, many clonus,provera,IUI&IVF’s later. Along, with 5 cervical cancer surgeries,miscarriages& ectopic pregnancies. I have the MOST BEAUTIFUL fixing to be 8yr old LITTLE GIRL there is!!!! I’m just a little bias though.
    Anyway, just try and stay strong and pray.

  13. Bonnie permalink
    October 27, 2012 6:27 AM

    Thank you for making me aware of PCOS. I will pray for you and your husband, for his safety, your sanity, and for you to experience the miracle you long for.

    • welcometothelife permalink*
      December 19, 2012 1:29 AM

      Thank you so much Bonnie! <3

  14. Mary permalink
    October 27, 2012 6:33 AM

    If you ever want to chat via email I’d love to share my story. PCOS and told no chance for kids by fertility specialists in Chicago. Took an alternative route and now have two kids here and one in heaven. Check out Pulling Down the Moon. They have a great program and if you’re not near them check out their book. I know your pain first hand and for quite a few years.

    • welcometothelife permalink*
      December 19, 2012 1:28 AM

      Hi Mary,

      Thanks so much for sharing a bit of your story. I have heard of Pulling Down the Moon and started subscribing to their newsletters by email several years ago when I was starting to TTC with my husband. I don’t blog here anymore, but feel free to reach out to me at my new blog @ eatpraylovelive.com. My email address is over there :)

  15. Katelyn Martin permalink
    November 22, 2012 8:45 PM

    I was 14 when I was diagnosed with PCOS. It was scary because my doctor stressed that if I didn’t lose weight I would have gotten diabetes as well. I was put on metformin too but was taken off since my periods went back to a regular schedule. I thought that meant I was feeling better but reading this shows that I was wrong and didn’t originally have enough information about it to begin with since I was so young. Thanks for the article, I will keep this in mind for the future.

  16. Shanaira permalink
    May 5, 2013 4:34 AM

    I’m 13 yrs old now and just diagnosed with PCOS a couple of months ago. When I was younger I’m such a thin, weak and pale kid but when I was 9-10 yrs my family thought I was becoming healthy and stronger. Now we know it’s just because of PCOS. I don’t have excess hair in my body but I have a really heavy flow and sometimes it’s up to 1 month. Now I don’t know what to do, when i think of my future, thoughts like I can’t have a child, having cancer always come in my mind. Anyway, I hope you already conceived a child and if not yet I hope you’ll have, just always have faith :)

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