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.
