"You could never know what it's like. Your blood like winter freezes just like ice, And there's a cold lonely light that shines from you, You'll wind up like the wreck you hide behind that mask you use."- Bernie Taupin and Elton John lyrics.
I wish that PCOS-A New Diagnosis sounded as cool as Star Wars- A New Hope. Sadly my title does not beg the reader to ask for a prequel or sequel. But if I were to have a prequel to diagnosis, it would begin with an obsession with wanting to have another baby. To be exact it was almost a 13 year old obsession (since the birth of my last child) culminating in two years of deep depression and inability to move onward. Finally, my husband and I decided to get started (for the fourth time in a decade) on the process which included an expensive procedure we had already saved up three times in the past for. This time was different though, because I had already crossed over the dreaded age of 34 into US standards of geriatric pregnancy. What a frightening term! (I found out later in Canada due to different populations, health care and stats, new doctors consider the age of 40 geriatric pregnancy but still! The term needs to change.) Testing my fertility and his was crucial.
I wish I could pretend that how women are treated in the medical system is all in my head. Especially when it comes to hormonal, cyclical issues, but my current blood work confirms, after years of complaints and being mostly turned down, that I was a legitimate case of needing help. Most of the time I was told I just had anxiety or that it was pointless to get tests. I was beginning to seriously doubt myself. I honestly began wondering if it truly was all made up. My resulting depression stemmed from feeling helpless, doubting my own intuition and gut, which led to me questioning if I even knew myself...an attribute I am proficient at otherwise.
I thought I had PCOS years ago but could never get a diagnosis....but for the new symptoms of high testosterone...Signs were everywhere. For instance, two years ago I finally had enough of the embarrassing hair growth on my chin and upper mouth, belly and feet. My husband thought the amount of time I spent plucking each day was ridiculous. Plus if I wanted to be hair free I also had to shave every single day. The upkeep was exhausting. So I saved and went to Electrolysis as part of my self care regime. She became a friend, someone I still look forward to seeing each month. A year into the treatment she was baffled that I was having new growth. She said it kind of reminded her of her Trans clients before the hormones evened things out. She suggested testing hormones. I told her they had tested a few basic ones and said I was fine.
"My voice drowned out in the thunder. But I won't cry, and I won't start to crumble whenever they try to shut me or cut me down."- Speechless lyrics Naomi Scott
The worst part was the anger. Two and a half years ago I noticed a switch in myself. Irritation and depression took turns being my primary emotions. No matter what meditation, positive thinking application, cognitive therapy technique or gratitude practice I tried, I still was regularly testy. Perhaps these practices enhanced my life and kept a steady balance to it all? Deep down I questioned, Was I becoming a monster? What was wrong with me? Maybe I was developing a new mental health issue? Who was that girl I heard snapping at the littlest annoyance?
"And did you think this fool could never win? Well look at me, I'm a-coming back again. I got a taste of love in a simple way. And if you need to know while I'm still standing, you just fade away..."- Bernie Taupin and Elton John lyrics.
There were other terrible symptoms ranging from pain, to loss to enlargement of my thyroid to thyroid nodules, to low iron to... the list goes on. I went to a few different doctors. Some did test my hormones. Five years ago my thyroid nodule was discovered which enabled some hormonal blood work. Most results were borderline or fine.
When I decided I may want to become pregnant, everything changed. While I am happy for women who need fertility support that they are treated this way, I am enraged that it took this for me to get a proper diagnosis. Shouldn't hormones be checked regularly when a woman comes in with complaints that can not be diagnosed?
"I won't be silenced. You can't keep my quiet. Won't tremble when you try it. All I know is I won't go speechless... Don't you underestimate me. Cuz you know I won't go speechless...Stay in your place better seen and not heard, well now that story is ending!...So C'mon and try to shut me and cut me down. I won't be silent."- Naomi Scott Speechless lyrics.
Also, I found out that testing blood on certain days of the cycle and times was CRUCIAL for accurate results. Most of the time the Doctors told me that would not matter. Suddenly, when it came to pregnancy it did. That was when I was flagged for high testosterone (which explained the switch in myself 2.5 years ago.) I was also flagged for low cortisol, lower thyroid, slightly lower progesterone, low ferritin again ... and the tests are still happening. How did this happen? The immediate diagnosis was PCOS. Addison's and other issues are pending confirmation.
"Don't you know I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. I'm still standing after all this time. Picking up the pieces of my life without you on my mind."- Bernie Taupin and Elton John lyrics.
Funny enough, I also had to get a Naturopath to order the tests through a family doctor. Even when she initially consulted with me she opened with, "It is unlikely that you will have PCOS, which affect fertility as you do not present as the type, most are very heavy women who are obviously hairy and present a bit like a man, but we will test you anyways." When the results were in she remarked, "Wow, you're blood work shows the standard fluctuation in hormones for a PCOS woman. You will need at least three months treatment to get yourself in order before you can get pregnant. In pregnancy you will have to monitored and we will give you some natural progesterone which should help you retain pregnancy and the rest of the issues we can manage through supplements."
Later she confided, "Honestly, your obsession with wanting a baby may have stemmed from your body needing balance. A pregnancy if retained at this point would help you a lot. Your mind knew that. It's like women who crave chocolate who actually are magnesium deficient. As soon as their body has sufficient magnesium they are no longer craving chocolate. If we balance out your hormones you may not have a baby craving, but if you still desire to be pregnant, that may carry you through to menopause without the debilitating symptoms you are having now. That is not always the case but it can often happen if a healthy pregnancy and labour is achieved. "
If this part of the story was the riveting sequel, it would finally find me at a place where my life was given back as MINE to live. Walking out of her office, my self confidence, and my trust in my inner gut was restored. My intuition and inner knowledge of self was confirmed. My confusion cleared up. Despite having all the symptoms still I knew why and that information allowed me to make informed daily decisions. My creativity re surfaced two days after diagnosis. Long term goals were thought out more clearly. My baby obsession became a light, healthy interest. I was even able to put that decision easily on the back burner until I could see if the me, that would be brought back into myself from treatment, would even wish for a child.
Luckily because a pregnancy is still an option I am not being put on birth control pills which are the standard for treatment and often only band aid bigger issues and make things worse further down the road. My naturopath put me on natural androgen blockers as well as other supports. I checked with the one other Dr. I trust to give an opinion on the matter. He read the ingredients and said that some of them were given to men when they have enlarged prostates due to over aggressive testosterone and it should do the trick at lowering mine. Plus, the other ingredients naturally worked for balancing out other hormones. When the metabolic process is off in a body, many disruptions happen at a molecular level to cause chaos. My body can not regulate with a simple diet and positive thinking. Yes, both these attributes are large factors in chronic illness, but they are not the only way to manage.
"Now that story is ending..."- Naomi Scott Speechless
My Naturopathic Doctor also went over backlogged records of my blood-work. She would occasionally point out one and say, “Oh that November you must have felt like you were dying. That particular concoction of hormones make women feel they are slowly dying from the inside. Most doctors say it’s low normal for thyroid but it’s actually a slow functioning thyroid that when combined with other body systems creates a certain set of issues. It must have been heartbreaking to be told you were fine when you felt that way.” Or “This pattern here explains your constant low ferritin. Often that can happen with certain women in PCOS. Each manifestation is different but with heavy cycles and also your co diagnosis of Lyme and Celiac which often also go together- fits the picture.” And “ You must feel you are collecting diagnosis but don’t be alarmed as they all can often fit together. Unfortunately, after years of no support , the body can spiral into other conditions. Even though you have chronic/lifetime diagnosis we can actually get most symptoms on track and prevent other things you would be at risk for with PCOS like high blood pressure, certain cancers etc. by proper treatment.”
Last Autumn, I actually paid to take an in depth course on PCOS. The one Dr. that was actually on my team told me to look into it. Unfortunately, my blood work was done on the wrong day and did not show anything. It is crucial to be done around 8 am, preferably after fasting on days 18-21 of the cycle. Also to have fasting glucose done to rule out other conditions. *(There ARE different days for bloodwork. See Below)
"Once I never could hope to win. You starting down the road leaving me again. The threats you made were meant to cut me down. And if our love was just a circus you'd be a clown by now."- Bernie Taupin and Elton John lyrics
I was told time and time again that I did not "present" as a "typical PCOS" patient. Multiple Doctors told me I wouldn't have it because I was "too young," "too pretty," "too feminine," "not hairy enough" or "not overweight enough." All these statements sound flattering but they were condescending judgements. I did not look hairy because I had electrolysis and shaved every day! I present younger despite wrinkles and aging due to being an Aspie/ Autistic. I looked passable because I know how to put on make up and wear falsies. I seem feminine because my voice is higher pitched anyway so when it lowered, due to testosterone, it didn't seem significant. I am thirty pounds over what I should be for what I eat, my exercise and my lifestyle. It is perpetually aggravating to be SO restricted and not lose or have anything to show for it!
Honestly, I have let myself go to eat whatever the last month. In the last two weeks I have become slightly pleasantly plump as my daughter giggled when I asked her if I gained. Ha I trust my children to tell me the truth . For the first time I have allowed myself to be. It bothers me sometimes but in general, I feel awesome so that has to count for something! I have had ENOUGH of the assumptions of what it means to be a woman. I have had enough of the assumptions of what a capable, strong, beautiful woman should be like. Or what a sick woman should look like. It goes both ways. I will not conform to that standard. I never fit and never will. But just because I like to take care of myself and am aware of how I present, does NOT mean that my treatment should be ignored or I should be disregarded.
"Here comes a wave meant to wash me away, a tide that is taking me under. Swallowed with sand left with nothing to say, my voice drowned out in the thunder...written in stone, every rule, every word, centuries old and unbending. Stay in your place better seen and not heard but now that story is unending. Try to lock me in this cage - I won't just lay me down and die. I'll take these broken wings and watch me burn across the sky."- Naomi Scott Speechless lyrics.
If I could make any point with this post- it is for women to keep pushing, trust their gut, and it's sad to say, but if you are of the age when you can have a baby, and can not be taken seriously any other way, maybe consider it and go in for fertility issues to be checked. It sucks that it may come down to that for some women. Women are left in Menopause to deal with issues, when many of the symptoms could be supported. Just because it is natural process does not mean it does nor require different supplements, supports and strategies to re balance the body! Women's health care still has a LONG way to go. The injustices of how women are treated today (SEE THIS POST) should not still be happening in this century. Don't live unspoken! Let your echo never be silenced!
"I can't be broken. NO I won't live unspoken."- Naomi Scott Speechless lyrics.
PCOS is not a fun diagnosis. It's not curable in a standard way, though it can go into remission. It does higher the risks for some scary conditions later down the road. Yet, I’m happy with the diagnosis for one simple reason- I can actually trust my own process. My symptoms can be explained even if the explanation sucks sometimes. I can suffer the how better knowing the why. This is a game changer. The missing puzzle piece I have consciously and subconsciously been chasing for years is finally on the board with the bloodwork confirming high testosterone. It’s a new hopeful beginning.
Two weeks into treatment and my family expressed that I was a way nicer person. If I forget a pill, I feel it that day. Spearmint tea twice a day also helps lower testosterone and balance out androgen's. I feel back in a semi state of control over myself which induces calm. My creativity came back after a few days of diagnosis. Suddenly my brain didn't have to fight so hard to have me hear that there was a problem! My life was already accidentally magical, and I was grateful for it everyday, but often I still had a layer of unexplained irritation covering it. After diagnosis, my symptoms did not change, but I finally was able to explain my system to itself.
"Watch me burn across the sky!"- Naomi Scott Speechless.
I don't know what the future holds. Maybe I will also have Addison's, a concern for low cortisol like mine, or any other myriad condition that is caused by hormone disruption. Maybe my ultrasound will pick up ANOTHER underlying cause? Maybe the pills will only work for a little bit. In a few years I could switch back to Estrogen or Progesterone dominance, as it is speculated that is what happened nearly a decade ago. That can happen in PCOS. The body is a strange and complex entity. Life is complicated with each new diagnosis, but it can also be simplified...especially if the person was already suffering without knowing why. All I know is that I will not go speechless on these issues. These broken wings enable me to burn across the sky. I won't be silent about the struggles specific to women and the discrimination and injustice that can happen.
"You know I'm still standing better than I ever did. Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind I'm still standing (Yeah yeah yeah). I'm still standing."- Bernie Taupin and Elton John lyrics.
I share this story for women everywhere to not doubt their bodies. Keep fighting. It took me more than ten years to be fully heard. Two of which I was asking every few months for answers! Depression is caused often by not knowing our bodies or why we are the way we are. Not everything should be blamed on anxiety or typical women's bodies....like we are just supposed to be messed up because we have a different hormonal concoction! We shouldn't just accept birth control as the only treatment. We shouldn't have to deal with insane periods or menopausal issues...just as we should not have to put up with sub standard care in labour and delivery. Most of our Women's health issues require revision. Find alternatives. It is worth it to pay for a Naturopath if you can save up to afford it. It took me a few different tries to find the right one for me, but it was worth the search. Don't give up on yourself.
I also ask that men, if they are reading this, to revise their opinions on Women's bodies. Especially men in the medical world. The women in your world will thank you for understanding the complex ways in which hormones can affect whom they are and what they do.
"Let the storm in. I can not be broken. No I won't live unspoken. Cuz I know I that I won't go speechless." Naomi Scott Speechless lyrics.
My life is back. I looked back over the last few years and issues that baffled me now make sense. I am finally free of self doubt. I may struggle with general depression on the days that my symptoms win, but the depression that stemmed from doubting self was debilitating. I am so relieved that is gone from my life for now.
"I won't be silenced. Though you want to see me tremble when you try it. All I know is I won't go speechless. No I won't go speechless. Cuz I breathe when they try to suffocate me. Don't you underestimate me. Cuz I know that I won't go speechless...I won't be silent. Don't try to keep me quiet."- Naomi Scott Speechless Lyrics.
"Don't you know that I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind..."- Bernie Taupin and Elton John lyrics
Post Note: Days of the cycle vary for blood work. Overall blood work for hormones are day 18-21. (Practitioners differ on this- it worked for me but some say different days.) However, if Estradiol is the main concern day 3 after a woman's flow is the best. If DHEA is a concern (especially in combination with previous high Testosterone results) than a week before or a week after the first period day is best. Cortisol is best around 8 AM and 4:30 PM on the SAME day. It is also helpful to have ACTH done this way. Research your optimal days and even if it doesn't say it matters, try your best to get tested on the optimal days for optimal results.
Song Choices: Speechless by Naomi Scott. (Aladdin) And Taron Egerton 's version of Elton John's I'm Still Standing
