My PCOS Story

Life of a cyster.

Life of a cyster.

My husband gave me a Christmas card in 2012 that said “p.s. I think we should make a baby.”  We had been married for two years at the time, we own our own home, we both have decent jobs– I am a teacher and he’s a deputy sheriff.  It was scary at first to think about, we were only 25… but the more I thought about it, the more it seemed like a good idea.  In March of 2013, we decided that I would go off the birth control that I had been on since I was 16.  I was never put on birth control to prevent myself from having children.  I was put on it to “regulate my periods.”  In high school, my periods were not regular at all.  I would go months without having one, and then have two periods in one month.  It was terrible.  After a visit to the doctor, she told me that birth control would regulate my periods– that was the only thing I was told.  It would regulate my periods.  There was no mention of a possible disease, or condition or a syndrome.  Just that these pills would regulate my cycle and make my life easier.  So, naturally, I followed the doctors advice, and never thought about it again– until it was time to go off of them.

Going off of the pills was a little nerve racking for me because I knew how terrible it is to have unpredictable periods and of course I was worried about that happening again– but it was time.  The first few months off the pill were strange, very, very light periods, no rhyme or reason to them.  Then, it was time for our trip back home to NY to visit our family.  4:30am on July 1st, 2013, I got up and began to prepare for our trip.  We wanted to leave the house around 5:30.  Around 5:00am, I began getting severe pains in my abdomen.  Severe.  I don’t think I had ever felt a pain so strong before and it was getting worse.  I could hardly stand or walk.  I crawled my way up the stairs and into our bedroom and woke up my husband.  I laid on the floor in tears while he got ready to take me to the ER.  Every bump in the car was excruciating.  It practically sent me through the roof.  I thought I was dying.

Several tests later, while I was doped up on some heavy pain medication, the doctor told me that I had a large ovarain cyst that was leaking fluid into my abdomen.  That’s why I had been so bloated the past few days.  This is the first time in my life that the words “ovarian cyst” had been used in reference to me.  He told me there was nothing that I could do about it except to manage the pain and wait for it to disappear. I was instructed to follow up with my OBGYN in three weeks to see if the cyst had shrunk at all.  Drugged up and feeling awful, my husband and I made our way up to NY.

Once back at home after NY I went to the OBGYN and had a transvaginal ultrasound.  While the technician was taking pictures of my ovaries, she asked me “Have you ever been diagnosed with PCOS?”  This was the first time I had ever heard the term “PCOS.”  I said no, and asked her what it was.  She quickly explained that it’s a condition where a woman’s ovaries creates little cysts and causes problems like irregular periods and can make it difficult to get pregnant.  That was the end of it.  The doctor told me that the cyst seemed to be shrinking, but he wanted me to come back again to check on it.  He didn’t mention PCOS.

I went home, did some research, and basically diagnosed myself.  Cried a bit as I read the horror stories about PCOS and picturing my life taking that turn.  I saw myself as an 85 year old woman, alone because my husband left me when I couldn’t have children, no kids or grandkids to enrich my life– I basically saw all my dreams come crashing down around me. Facial hair, acne, infertility. It stressed me out.  It made me sad.  HOWEVER– I was not overweight.  PCOSers are supposed to be overweight.   Everything says that if you drop 10 lbs, you can help your PCOS symptoms and possibly ovulate normally.  This let me hold on to the possibility that maybe I didn’t have it… I didn’t need to lose 10 lbs.  I was 5’6 and 120lbs.  It would probably be a bad idea to drop 10 pounds. This gave me a tiny bit of hope.

I went to my OBGYN in November to check on that silly cyst.  November made eight months of attempting to conceive with no luck.  I was 26 years old at this time, and it should be easy for me to get pregnant.  At the doctors office, after another transvaginal ultrasound, I was told that while the big cyst was gone, I did have many little cysts all around my ovaries, strung like a string of pearls.  I had no had a period in 53 days.  He informed me that I was not ovulating.  I asked the doctor if I had PCOS, and he wouldn’t give me a straight answer.  He said that the cysts didn’t mean I had PCOS… which made me confused as it seemed that he was trying to give me hope.  As I cried in the office like an idiot, he refered me to see an Reproductive Endocrinologist.  And I did.  In January 2014.

During the first visit with the RE, he said “if PCOS is your only problem, then it’s an easy fix” to which I said, “well, I’ve never actually been diagnosed with PCOS…” and he said “I am diagnosing you.”  And there I had it.  All those stories I had read seemed like my future.  He did a check-up, took some blood to test my hormones and told me about Clomid and Femara.  He said Clomid wasn’t a good option for me because it was “fat-soluble”… I must have looked confused because he said “basically, it’s for chubby women.  It will not be good for you, you do not have enough fat.” So, he suggested femara, told me to try it for three cycles and that it should work within those three, gave me lots of paperwork to read about it, and would call me and let me know if I needed hormones or the femara.  Turns out, I needed the femara.

Here I am today.  Three cycles of femara later, and I had a big fat negative on my pregnancy test today. This was my last cycle.  I was so sure that it would work.  My husband woke me up this morning with “today’s the day! I love you” and off to work he was. Then I had to let him know that my test was negative and no period.  PCOS is the gift that keeps on giving.

Its a rainy day, and after a cry and some self-loathing, hating my body, I decided that this is ridiculous.  I can not let this PCOS business run my life.  I need to fix it.  I am a “thin cyster.”  I can not manage my PCOS like most other women with PCOS.  I cannot lose weight, I cannot take a diabetic medication when I do not have diabetes or an insulin problem, I already exercise routinely and eat well.  All ways that are suggested to manage PCOS will not work for me.

This is my attempt to take control of my PCOS by adopting some pieces of the Paleo diet mixed with a Mediterranean Diet.  Going Paleo/Mediterranean, having a more strenuous exercise plan, and being as healthy as possible is the best way for me to cope with this awfulness.  I’ve read that by cutting out all processed food, food with hormones added and non-organic food, can help my body regulate it’s own hormones once all those added hormones are gone.  This will be difficult as most foods today ARE processed.  However, it must be better and easier than being disappointed and depressed at the end of each month.

Rather than seeing PCOS as Polycystic Ovarian Sydrome, I now choose to look at it as my Perfectly Capable Ovaries are Sleeping… they just need to be woken up.

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2 thoughts on “My PCOS Story

  1. As someone with PCOS, I know how difficult it can be. I was diagnosed at 16 and promptly put on birth control as well. However, every time I’ve been on birth control (I’ve gone on it and off it for year and I try a different brand each time) it has been horrible. I end up with an incredibly heavy period that will last 14 days!! On top of that, I bleed so much that I become anemic and have even landed in the ER for a blood transfusion because my counts were so low. I have been lucky enough to not have the excess hair or acne, but I did not dodge the weight bullet. I have always been overweight and it is incredibly difficult for me to lose weight. I will do the things that a “normal” person will do for an entire month of working out intensely, exercising, and eating right and I will lose 1-2 pounds! 1-2 pounds!!! It is beyond frustrating. I went on the Metformin (the drug for diabetics) and that was the WORST EVER! Sure, I lost some weight, but that is only because I was in the bathroom all day long getting sick so I couldn’t keep anything down.
    For 16 years I’ve dealt with this and for 16 years I have had the impression that none of my doctors really know what to do with PCOS. A general doc or an OB/GYN always suggests birth control and that is their only idea. A reproductive endocrinologist told me that he would only help me IF I were trying to get pregnant. So, I’ve resigned myself to no birth control and a period once or twice a year. I am thankful for the fact that I have no desire to have children, because I don’t know that I could handle the monthly heartache. But, please keep the faith! I know PCOS sufferers who have gone on to have children. It might just take you some time, but there is still hope! Don’t let go of the hope!

    Liked by 1 person

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