Category Archives: PCOS

That time I should’ve looked further into my PCOS diagnosis

If you’ve been a long-time reader you might remember that in December of 2016 I announced that I had been diagnosed with PCOS (and then edited the post to report I had been undiagnosed or misdiagnosed with it).

I never thought about it again and thought I had dodged a health bullet.

Until now…

Why I Should’ve Looked Further Into My PCOS Diagnosis

Mike and I had been trying to conceive over the course of a year and a half. If you haven’t read the last post we announced we’re pregnant! So back in July of 2019, my family doctor started some standard fertility tests (blood work and ultrasounds). Over the course of several months, I had been poked and prodded more times than I could count. I had lots of blood work drawn, ultrasounds and a ton of appointments.

And all of a sudden they thought I might have PCOS again. And then like last time, I didn’t. However, it’s not that easy. And this time I dug further into researching this condition.

My medical team seemed to be a bit stumped about what’s going on with my body. My family doctor and a gynecologist have told me that I don’t have PCOS according to the Rotterdam criteria.

The Rotterdam criteria requires the presence of two of the following: oligo/anovulation, hyperandrogenism or polycystic ovaries on ultrasound.

Source: American Family Physician

I only present with polycystic ovaries, which is why I was undiagnosed with PCOS back in 2016. My hormones show that I may be ovulating (as progesterone in the back half of my cycle was ok and an indication I had ovulated) and there is no elevated testosterone so I don’t present with hyperandrogenism. However, one of the fertility Naturopath’s that I saw last year, after taking a look at my blood work and ultrasounds requisitioned further blood work. She believed I have a whisper of PCOS. Or what is known as Phenotype D in the literature.

So why did I title this blog post… “that time I should’ve looked further into my PCOS diagnosis”. Because in addition to polycystic ovaries, I also have a high LH to FSH ratio at the beginning of my cycle. Which isn’t anywhere in the Rotterdam criteria. So if you’re working with a practitioner that only looks at that criteria, you too will be undiagnosed with PCOS. My naturopath monitored my LH for several months. And sure enough, it was always high at the beginning of my cycle. Which in simply science means my body wasn’t sure when to exactly ovulate. LH usually spikes at ovulation signaling to your body to release an egg.

If I have known how to read my bloodwork back in 2016 I would’ve known or learned that a higher LH to FSH ratio at the beginning of my cycle is problematic. And that’s what I wish I had looked further into back in 2016 when my body started to warn me that something wasn’t ok. I have definitely had moments of frustration wishing I had known all of this before spending a year and a half trying to conceive. But hindsight always does that.

Side note, I’ve never become so knowledgeable about the female body, my cycles and the hormones that support the cycle. I love learning all the things but it also boggles my mind that we may not learn these things about our body until we’re ready to start trying for a family. I wish this was taught in school!

If I look back on my blog post from 2016, I just didn’t have the medical team around me that was informed enough or forthcoming enough about women’s health to indicate what hormone levels were imbalanced and how to be proactive about balancing them. I probably also didn’t want to have to deal with another diagnosis so when an endocrinologist told me I didn’t have PCOS. I got really excited not to have another health “problem”.

The Good News

After reviewing countless blood tests since last summer I was really thankful that I did not have imbalances with my estrogen, progesterone or testosterone. So at the end of the day, I only had to address a higher LH to FSH ratio at the beginning of my cycle. I took that as a huge positive and something to be grateful for.

The Other Stuff About a PCOS Diagnosis

We did discover a few other things in many rounds of bloodwork and ultrasounds.

High Ferritin: Ferritin is a blood cell protein that contains iron. Since mine is quite high I have reduced my red meat intake considerably. Throughout the summer I was tested for many things associated with high ferritin and all those tests came back negative (I won’t get into it but it was definitely a high-stress time period). My naturopath hypothesizes that it could simply be a marker of inflammation and/or a slow or sluggish liver.

High ALT: ALT stands for alanine aminotransferase and is a liver marker… so this points back to my liver struggling…

High Thyroid Microsomal Antibodies: An indication that my thyroid needs a little support.

Highly Sensitive CRP (hs-CRP) = 1.0: So this is a blood marker that is used to discover a risk for cardiovascular disease. However, my CRP marker has come back in the normal range for inflammation in my body. But when we looked at my hs-CRP it falls within the average risk range. To any doctor, this would mean they weren’t concerned but to my naturopath, this indicates the potential low-grade inflammation my body has been dealing with for many years.

Elevated Hb and Hct: Another cue that may be associated with the high ferritin.

Hydrosalpinx: So the last fun thing that was discovered this summer was a blocked fallopian tube. This was found during an ultrasound done in July. It was explained to me as simply water or fluid blocking one of my fallopian tubes. So definitely a contributing factor to why we struggled with fertility in 2019. We have no idea how long it was there so we have no idea if it blocked eggs releasing naturally.

My Fertility Supplement Protocol

New Supplement for the First Half of My Cycle

Liver SAP by NFH: to address the inflammation in my body and support my slow, sluggish liver. I stopped taking this when we conceived.

New Monthly Supplements or New Dosage

Prenatal SAP by NFH: I took 3 capsules a day, 2 with breakfast and 1 with lunch to prepare my body to conceive. I am still taking this supplement.

Inositol Caps by AOR: I took 1 capsule a day with lunch to support hormone balancing. I stopped taking this once we found out we were pregnant.

PMS SAP by NFH: I took 1 capsule a day at lunch for cycle support. I stopped taking this once we found out we were pregnant.

NAC SAP by NFH: I’ve been taking this since my MS diagnosis so we just increased the dosage from 1 capsule to 2 which I take with breakfast. This is to combat the inflammation in my body. I’m still taking 2 capsules a day in pregnancy.

Routines

In October, I also did Castor Oil Packs on my abdomen every evening before bed for around 30 mins in the first half of my cycle.

Weekly Acupuncture: I was able to go see my naturopath once a week first thing in the morning before work for acupuncture treatments which was a great way to start the day once a week.

Mindfulness & Meditation: I’ve dived into reading Full Catastrophe Living, practicing different mindfulness and meditation techniques and truly try to keep my morning routine to a slow and relaxed morning. No more early gym dates but taking the time to meditate or read. And even less side hustle activity.

Good News Results

I had a hysterosonogram in October to discover the “state” of my fallopian tubes. As I lay on the table, with a catheter inside me shooting water and air bubbles into my uterus the doctor and nurse exclaimed you’re good. Both tubes are clear. I few happy tears slipped out of my eyes. Sure it could’ve gone away on its own but if my changed routines, supplements, and castor oil packs also worked to support my body then I’m really freaking grateful for that 🙂

In my next post, I’ll share why we opted for IUI to circumvent my hormone imbalance.

How to be friends with someone who’s “sick”

Over the past 2 years, I’ve been asked a few times by friends what is the best way to show up for someone who’s been diagnosed with a disease.

While I’m definitely not an expert, and everyone needs something different in friendships, however, here are a few things I’ve learned I’ve needed as I learn to live with my auto-immune sidekick.

After my diagnosis with MS in December of 2014, I shared a post about People’s Reactions to a Public Diagnosis. I got amazing feedback from some of you, who let me know that they hadn’t really thought about how the “I’m Sorry” comes across and how they were making a more conscious effort of offering practical help to others as their friends deal with new health issues.

While this post was very personal for me and how I react to others, I’m glad that it may have helped other’s as they show up for their friends during a health crisis.

So this post is inspired by a friend who has had to be there for some of her close friends this year and as she deals with her own health diagnosis this year.

  1. Hold space for them to be heard. Moral of the story. Learn to just listen, without advice or opinion. This one can be so difficult. If you’re a chatty Kathy, like myself, this one is something I’m still working on.
  2. Share resources you are aware of so that they can go through them when they are mentally ready to tackle educating themselves. But ask first!
  3. Share what a healthcare practitioner has done for you so they can imagine why they would reach out to a naturopath, or acupuncturist, etc
  4. Offer practical help, from going grocery shopping for them, to driving them to an appointment, to picking up supplements for them, or simply suggest a relaxing night like a movie night where they don’t have to talk or think but simply have company as they process new emotions and thoughts.
  5. Show interest in what they are doing for themselves. My friends have listened to me countless times on how I’m adapting my meal plan or supplements or self-care as I learn to live well with MS. Simply being listened to and heard was amazing.
  6. Don’t treat them like babies. I want to feel strong and be strong. If I allow others to treat me as weak then I’ll end up treating myself that way as well. If that makes any sense.

That’s my two cents, I hope it helps as you show up for others in this world.

If you have been diagnosed with a sidekick, what have your friends done for you that have impacted your healing process?

Diagnosed with PCOS

UPDATED in 2017: Several months later, I went to see an endocrinologist, we retested my blood work and deduced that I was either misdiagnosed or was able to balance out my hormones in a short amount of time.

December seems to be the month where I get diagnosed with health issues (MS Dec 2014). This December, I have been diagnosed, in the words of my gynaecologist, with “a high probability that you have PCOS, polycystic ovary syndrome”.

Ok so first to save you the trouble of googling what PCOS is here is the webmd definition:

Polycystic ovary syndrome (say “pah-lee-SIS-tik OH-vuh-ree SIN-drohm”) is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS also may cause unwanted changes in the way you look. If it isn’t treated, over time it can lead to serious health problems, such as diabetes and heart disease. Most women with PCOS grow many small cysts on their ovaries. That is why it is called polycystic ovary syndrome. The cysts may not be harmful but lead to hormone imbalances.

In other words, my lady balls (ovaries) are highly confused.

Here is how this year has gone for me. I decided to go off birth control in April. Not because we are trying to have kids but because I choose to continuously optimize my health and I didn’t want to rely on birth control to regulate my hormones monthly. I’ve been on birth control since I was 18 years old. That’s 16 years of something chemical regulating my body. In my quest for optimized health this was my next logical step. I didn’t have a plan though. I thought I could just go off of birth control and everything would be fine. For the first few months everything was fine. Then my period stopped and I had a good panic attack this summer. I thought I was pregnant. And although it would be more than ok if I was and we are ready for children it’s not our current plan. We would like to be old fashioned and get engaged and married first. So I had a few teary days or worry and then finally bought a pregnancy test and shook and cried while I peed on stick.

Buying your first pregnancy test (I thankfully have never had a scare before) is like buying your first package of condoms or a yeast infection treatment. Ladies you know what I mean. It’s awkward and a purchase at the drug store where you don’t really want to make eye contact with the cashier. I threw my shoulders back and smiled big, making eye contact with her. She smiled back and said enthusiastically “Have a great evening.” I thankfully emitted “this is exciting I’m really hoping to be pregnant” vibes so she gave me my energy back to me. I got home, peed on the stick, texted my best friend and the negative result came back and a sign of relief.

Then October came and a Thanksgiving long weekend at my boyfriend’s family cottage. My period decided to make a resounding appearance. It’s as if it walked in the door with big bravado and screamed “I’m HERE! Did you miss me!?” The cramps rocked my body. I hadn’t had cramps like that since my teenager years and I’ve had pretty bad ones over the years. I spent a day curled in the fetal position with a hot water bottle on my abdomen for relief. It’s crazy that birth control has been the only thing keeping me from being completely out of commission for a day.

Later that month I was rocked with cramps one late afternoon at work. Things had been extremely stressful at work so I thought my body was just reacting to the stress. I left work around 4 in the afternoon and came home to crawl into bed. That’s when the cramps starting rocking my body anew. I actually thought I was in labour. It felt like something was squeezing my insides. I had just had my period 2 weeks before so I didn’t think that was what was happening. The pain would be so intense for 5 mins and then dissipate. It kept hitting me in waves every 20 mins then every 10 mins then every 5 mins and then every other minute I was screaming and crying in pain. Mike came home from work and asked if I wanted to go to the hospital, when I refused he asked me to take an Advil. 2 years ago I went to the hospital and was diagnosed with MS, so I have a bit of an aversion for hospitals.

After 2 hours the Advil still hadn’t helped. I asked him to get my Clary Calm roller bottle from doTERRA which had been helping with period cramps over the past year. After 10 mins the cramps had completely dissipated which was another amazing discovery in itself! I managed to fall asleep as the pain became a dull lull. After 3 more days of pain, Mike urged me to go see a doctor. Because I’ve been healthy all year I hadn’t found a family doctor in Ottawa yet. I took myself to a walk-in clinic and the doctor requisitioned an ultrasound. They rushed my results and I got a call the next day to come back in. The walk-in clinic doctor let me know they found a bunch of cysts on my ovaries that could mean a possibility of PCOS. He sent me to a gynaecologist and a week later got an appointment. There I was told that to confirm the diagnosis I would need to have blood work done between the 3rd – 5th day of my next period. I was off to Patagonia at the end of the week for the majority of November so the testing was put on hold.

Cue December, another ultrasound at a reputable women’s clinic and then my period came so I was able to go for the blood test to look at my hormone levels.  The follow up appointment with the gyno was a week later and the words: “there is a high probability that you have PCOS, polycystic ovary syndrome” were heard. I asked what would actually confirm the diagnosis and he let me know that it would include a biopsy of the cysts and that’s not done these days. Based on the ultrasounds & blood test they can “conclude” the diagnosis.

Here is where my faith in Western medicine continues to fail. The gyno’s next words were “Ok so we can put you back on birth control and if indeed you have an insulin resistance which could be a contributing factor (I have to have another blood test) we can put you on diabetes medicine.” I didn’t even try to explain that I didn’t want to rely on pharmaceuticals.

I tried asking questions to understand the disease more but was rushed fairly quickly out of the room.

Robyn: “What are the causes of PCOS?”

Doctor: “It’s genetic”

Robyn: “What is causing my hormones to be off balanced?”

Doctor: “As I said probably genetic”

Robyn: “Where should my hormones level be?”

Doctor – No answer

Robyn (thinking, ok let’s try this again): “What can I do to regulate my hormones through stress management or diet”

Doctor – Blank Stare – “Birth Control or Diabetes Medicine”

I thanked him for his time and asked for copies of my tests so I can take them to my functional medicine doctor to review and either have more tests or discuss a treatment protocol I can try.

On one side I’m relieved that I have a diagnosis. After a ton of research over the past 2 months I’ve found that so many women live with PCOS without knowing it. It’s usually discovered when women try to get pregnant. I feel a sense of relief that I have more information of why I’ve potentially had so many mood swings this year, beyond my micronutrient deficiency that could be pyroluria.

So I’ve had a good cry of frustration that I have another health “issue” to live with and now I’m figuring it out. It’s another sidekick to teach me more about my body, this vessel that supports me on this earth.

My first step was to dive into some of Melissa Ramos‘s content. As a self-declared poop and hormone whisperer who appeared on my podcast earlier this year I knew she has amazing resources. I signed up for her free PCOS guide and started receiving an email drip campaign of content. She brought up amazing resources and tips.

My first course of action is to support my adrenals as I figure this out. To do this I came to terms that I have been consuming too much coffee.

Last week I went cold turkey (the same week I got my period), so needless to say detoxing off of caffeine while having ridiculously strong cramps is almost unbearable. I was not myself at all. I replaced coffee with Melissa’s Hot Chocolate Recipe and one cup of Matcha Green tea a day. I also mixed up a mason jar of her Super Power Shot that is explained to help reset the body. I’m on week 2 and starting to feel more myself after just 2 tactics. I can’t wait to dive more into research and start more habits or protocols to continue to support this crazy body of mine.

When I announced my MS diagnosis back in 2014 I received amazing resource recommendations and words of comfort and encouragement. So in December 2016, come at me with all the positive vibes & resources you have. Much chronic illness love.