Wednesday, September 25, 2013

My PCOS Story

In honour of PCOS Awareness Month, I wanted to share my personal experience with PCOS. It's a long story – so get comfy!

When I was a teenager, I often had light periods with A LOT of pain. I had an ultrasound that showed some cysts – but nothing to worry about. My doctor mentioned PCOS, but she wasn't worried as I had none of the other symptoms and wasn't planning a family any time soon.

Shortly thereafter I went on the pill, and remained on it until I met my husband. I went off it, in hopes of starting a family, and was immediately graced with very intermittent and sometimes non-existent periods, horrible bleeding and bad cramps. Going from my prior light periods, I was quite surprised at this sudden change. My doctor at the time wasn't concerned, and told me to wait it out. So I did. I waited it out for almost a year. In that time, I gained almost 70 pounds. It was confusing and horrible and I felt like garbage most of the time. The more weight I gained, the worse I felt. It was just a bad year.

I got a new doctor who immediately was concerned by my sudden weight gain and the fact that in a year I had only two periods – both lasting for 3+ months. He did an ultrasound and found a 2 cm cyst on my right ovary and immediately referred me to the top PCOS specialist in my city. In my first appt with her – we'll call her Specialist #1 – she took one look at me, told me I definitely had PCOS, prescribed me Pro.vera for the first 10 days of the month and sent me home – telling me to come back when I get pregnant. Well, as soon as I started the Pro.vera I started to feel poorly. I was bloated, sore, achy, just over all unwell. I called her to ask if these symptoms were normal, and was told she wasn't available. The nurse that had been assigned to my case told me she didn't have experience with Prove.ra and couldn't tell me if the side effects were normal. I asked for an appt, and they told me Specialist #1 was having a “personal issue” and they wouldn't be able to book me an appt. They would have her call me as soon as she could. I waited, and waited, and continued to call and get the same answers. The meds weren't even working – I still hadn't had a period. Weeks went by and I gave up. I called my family doctor and booked an appt with him. He told me to stop taking the progesterone immediately and booked me for an ultrasound. I didn't make it to the ultrasound – within two days I was in emergency surgery having my right ovary, fallopian tube and the cyst - that had grown to 15cms in size and contorted – removed. The surgeon who had performed the surgery was shocked and surprised that no concern had been given to my cyst prior to being put on medication, and offered to take me on as a patient. She became Specialist #2. While I was recovering from my surgery, the office for Specialist #1 called to book me an appt with a different Dr there as apparently Specialist #1 was taking some time off. This was almost TWO MONTHS after I started trying to get an appt because I was feeling unwell. I hung up on them. Maybe it was my hormones adjusting after the surgery, or maybe it was just my anger at their negligence...but I was angry and devastated and all kinds of emotions. At my follow-up appointment for the surgery Specialist #2 went over her findings. She had found a ton of scar tissue from a previous surgery, so she removed that and hoped that would help. She also saw that both ovaries were polycystic, my remaining ovary more so than the one they removed. Given that, and my chance of a recurring cyst, she put me on birth control to prevent the cyst from growing and told me my best option would be IVF – and that if I wanted kids I needed to do this sooner rather than later. She referred me to the fertility program in our area. At the fertility program, I met Specialist #3. I was anxious and excited and nervous to be there, and I was hoping to have a pleasant, kind experience. Boy was I wrong. Specialist #3 was...well, interesting to say the least. She started the conversation with saying “Wow, you're certainly young. I'm curious why you think you need to be here, when you have so many more years to conceive on your own.” That was a bad start. I felt like I was wasting her time and like I didn't deserve to be there because I was 25 and not 35. She reviewed my file and said I had “decades” to get pregnant, so I had plenty of time. Since I had so much time, she wanted me to work on losing the extra weight I have so I'm at my prime for pregnancy, getting my PCOS under control, regulating my cycles and trying naturally for another 3 years before returning to the program. Her parting words to me were “come back to me when you're a skinny minnie”. I was devastated. Just devastated. I mean, I knew I was overweight – and I also knew it was better for everyone if I was thinner. I didn’t expect to go in there and get pregnant today. But it was my doctor who sent me there...not some whim of my own. I was told to go, and go now (hence the referral). And, I had seen women in that waiting room heavier than I was. She had also told me during the appointment that if I was older, she'd treat me anyway but because I'm so young I have the time to do what they can't. It was just a bad appointment all around, and I left feeling very confused and unsure.

I was scheduled for a follow-up with Specialist #2 so I just waited for that appointment and figured we'd discuss the fertility program's response at that appointment – but when I arrived, I was informed by the receptionist that Specialist #2 had gone into early labour and had her baby over the weekend, and so I'd be seeing her replacement...Specialist #4. At this point, I was ready to throw in the towel. No one seemed to be on the same page, no one seemed to even stick around, and I still had never been tested for anything – no blood work, nothing! I was extremely frustrated with the medical system and feeling very much let down...and I was still very unsure of my diagnosis, what it meant, and what exactly had happened so far.

Thankfully, Specialist #4 turned out to be a breath of fresh air. He was a fresh-out-of-school young, handsome male doctor and when he walked in the room, my first thought was are you kidding me? I get some KID taking care of me? A man – who can't possibly understand?? However, he turned out to be one of the best doctors I've ever had. He asked me a couple questions and I suddenly burst into tears. I told him about the fertility program and her cold response, and the previous doctors, and how I still didn't even really know what PCOS was or what it meant for me, and I just sobbed and sobbed. He just sat there, looking surprised but handing me kleenex and actually listening to everything I said. When I stopped crying I sat there mopping my face up, feeling like an idiot and trying to plan my escape from the office when he finally spoke. He said that he wanted to start from the beginning, and he spent over an hour just explaining everything to me. My diagnosis, what it meant, what had happened with my cyst, how progesterone isn't a good idea when you have a cyst, how he didn't agree with the fertility program, and – possibly the most important thing – was that he told me he could treat me with medication. I hadn't known that going into this...I thought I had to see the fertility program for Clo.mid or Met.formin or any other treatment. He was thorough and honest, and he told me that I wasn't obese and he didn't see an issue with me being pregnant at my size. I was healthy otherwise and he was willing to try Clomid. But first, he wanted tests done – TESTS! I was so happy to finally hear those words! He ran all kinds of blood tests and ultrasounds and checked everything out...and for the most part, I checked out. I didn't have any blood markers of PCOS but since the surgeon reported polycystic ovaries, I did still have PCOS. So, we began Clo.mid. During that time I lost 54 pounds, and was very excited for Clo.mid. I only did a couple cycles, which did not work, before we make the tough decision to relocate closer to my family. So we ended our journey there, and took a break so we could move, find new doctors and decide what our next steps will be. In the meantime, we're focusing on being healthy and enjoying life...something we haven't had much of for the last couple years.

Although I sometimes wish I didn't have PCOS, I have learned so much from this experience. We're still waiting for our BFP, but I've made some amazing friends and some truly incredible women on this journey and for that, I wouldn't change it!

** If I could offer advice to anyone currently dealing with PCOS – it's do your research and don't settle for one person's opinion! Ask the right questions, make sure you know what's happening and that you're confident in their decision, and find a doctor who works with you.


  1. Amazing advice Rach! I hate hate hate when doctors immediately start harping on weight issues. I went to an OB that did that when I was newly pregnant after IF and that was all she'd talk about, acting like I was horrible and negligent to become pregnant because I was overweight. And to be obviously discriminated against for your age was just a slap in the face! I'm glad you went back to the other office. I really hope that you find a new doctor that is just as fantastic and gets you where you need to be!

  2. Hello from ICLW! Oh my goodness - Specialist #1 committed malpractice! I'm glad you're okay now. Your story really highlights how terrible bedside manner can impact infertility treatment. Now that you've had a doctor who actually listens to you, I'm sure you won't settle for less in the future. And congrats on the weight loss! That is amazing and you should be really proud of youself.

  3. I also had bad experiences with doctors - it just makes me so angry. All you can do is trust your gut and move on. We are so conditioned to trust the people that let us down. Sigh.

    1. Absolutely...and that's the worst part. We trust these people because we SHOULD be able to. I was seeing the TOP PCOS specialist team in all of Western Canada...and look at the care I received. I learned that just because you have a title, doesn't mean anything. I will ALWAYS do my research from now on and not let the doctor be the only expert. It is just so discouraging when you have bad care.

      I'm sorry you had bad experiences sure makes it difficult to move forward!


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