**Warning: some of this post will include TMI about hormones and bodily functions. Given that this is a writing/authorial/book blog, I realize that this is slightly odd, but I have received a lot of e-mails asking me about the noticeable change in my appearance. I thought I would use this platform to inform you what happened and also as a place to educate those who might be curious or suffering from PCOS **
I’ve gotten some e-mails as of late asking a variety of questions. One in particular is: why do I look so different? As some of you know, I have lost 81 lbs in the last year. Wow, right? The story is a long one and I have debated telling it for some time in this forum as it isn’t about my books or my stories. I share this with you and it’s very hard and humbling to do so, but I really do hope it will be helpful for someone out there.
I have something called PCOS, which stands for Poly Cystic Ovarian Syndrome. It’s a very complicated endocrine disorder. The endocrine system is a collection of glands that are in control of many systems within your body. Cell growth is one system that is influenced by the endocrine system, but another is your hormones. PCOS isn’t something you can just look in the mirror one day and say – “Oh, heavens! I think I have PCOS!” The symptoms for PCOS, for me anyway, were gradual. It is also not contagious.
Here is the technical definition of PCOS from the Mayo Clinic:
“Polycystic ovary syndrome (PCOS) is a common hormonal disorder among women of reproductive age. The name of the condition comes from the appearance of the ovaries in most, but not all, women with the disorder — enlarged and containing numerous small cysts located along the outer edge of each ovary (polycystic appearance).”
Here’s another definition from The University of Chicago of Medicine:
“PCOS develops when the ovaries overproduce androgens (e.g., testosterone). Androgen overproduction often results from overproduction of LH (luteinizing hormone), which is produced by the pituitary gland.
Research also suggests that when insulin levels in the blood are high enough, the ovary can be stimulated to produce more testosterone. That is, the combination of having ovaries that are responsive to insulin and high insulin levels in the blood,can result in the overproduction of testosterone.
Obesity, which itself can cause insulin levels to rise, may intensify PCOS. Yet, not all women who are overweight develop PCOS. Thus, there appears to be something unique about PCOS both in the excessively high insulin production and the increased sensitivity of the ovaries to the insulin that is produced.”
What does this mean? Well, it’s different for everyone. I didn’t see the symptoms of PCOS until I was 27 and many women get the symptoms at various times in their lives.
The number one symptom for me? Weight gain.
My whole life I was 130 lbs. Sure, I could gain 10 here and there but it wasn’t a huge deal and I was never obese.
It happened slow and steady.
I blamed my diet at first and cleaned up everything I ate, as I normally did if I gained a few pounds, but it didn’t seem to help. I chocked it up to age. After all, I was 28/29 and weight gain was expected. I couldn’t be a size 4 like I was all throughout my 20s. But no matter what I did – I gained and gained. I worked out just as hard as I ever did. One day, I was in a kickboxing class and I was working myself so physically hard, I got an optical migraine.
I gained until I was 208 pounds (that was in 2010).
Another symptom came around the same time as the stubborn weight gain. I got in the shower as I usually do (cleanliness=yay) and I noticed a lot of hair washing down the drain. It’s normal to see some hair in the shower. It’s also normal at various times in the month to see more hair than usual in your brush, those are healthy shedding cycles. (For more on shedding cycles go to: Shedding Cycles/WEBMD) or speak with your doctor.
My hair loss was significant. I also noticed the place my hair was particularly thin was at the front of my head. People used to stop me on the street and compliment my hair. Now, my hair was falling out. A lot of people in my immediate life said that they “couldn’t see anything” or “I was imagining it.” But I knew me. I knew my hair was thinning and I absolutely knew I looked different.
But the fun didn’t stop there. I also got rosacea and started missing periods (this is the TMI part). While all of this was going on, I was completing a MFA at a low-residency program at Vermont College of Fine Arts. I chocked up the missed periods to the fact that I was sharing a room with a roommate for the first time in 10 years! Maybe I was jumping onto her cycle? Maybe I was irregular from living with so many women in the same dorm?
By then, I had PCOS symptoms for a year and they didn’t all come at the same time (I didn’t know I had PCOS either). That’s part of the PCOS diagnosis; it can’t just be diagnosed through one symptom. Hormone levels and multiple symptoms have to be in a very specific symbiosis along with an ultra sound of your ovaries to make an accurate diagnosis. But more on that in a few.
Let me clarify that if you are worried you may have these symptoms and that you could have PCOS, please understand that what you may be interpreting as PCOS could in fact be something else entirely. Part of the purpose of the blood tests are to:
1. Assess where the symptoms are coming from as it might not be PCOS and
2. Confirm you have the necessary levels, etc, to confirm if you have PCOS.
ANYWAY – Here is a list of the symptoms I had at this point and the order they presented themselves to me.
Hair loss (particularly in the front. It mimics male pattern baldness)
Weight gain, particularly in the stomach area.
(After seeing my doctor and getting an ultrasound) – Cysts on my ovaries
And the worst of them all?
I had bone crushing anxiety.
I don’t know if anxiety is clinically part of PCOS as I have read varying accounts of this, but it was absolutely a part of my experience. I had the worst anxiety of my life. I literally was a different person. It’s hard to describe that kind of anxiety but here are a few of the symptoms: shortness of breath, elevated heart rate, stomach sensitivity, adrenaline, circling thoughts, loss of concentration because you’re too busy obsessing about the issue of the moment. Need I go on? Not only did I feel like I was a stranger in my body, but I also felt like I couldn’t control my anxiety. I was out of control and had no way of knowing how to reign myself back in. So I just obsessively freaked out all the time for YEARS.
Here’s a couple examples of how “le crazy” I had become: I had travel anxiety, I didn’t want to go anywhere for fear my car would break down. I didn’t like to leave the state. So you can imagine my insanity when I had to drive 4 hours to Vermont for my residency program. Also, I had hypochondria and if I had any sliver of a medical issue, I was convinced I was moments from death.
I alienated people from me and I lost important friendships. As I said, I was at Vermont College’s MFA program meeting new people and I am quite confident I am not close friends with any of my classmates because of the behavior I exhibited because of my anxiety. I couldn’t communicate. I didn’t know how. I was living life in a body I didn’t know and my anxiety pushed me into a place I didn’t understand. This may seem like hyperbole, but no. At that time, if I had a cold, my thoughts could spiral. Within moments I would go from, “I think I have a cold,” to “this is some kind of serious immune deficiency and I should go get checked out by a professional.”
It sounds funny, but it was exhausting.
There are other symptoms of PCOS, which I did not experience. Like I said, every person’s experience with PCOS is different. Here are some more symptoms which may indicate you have PCOS: excess facial and body hair, adult acne, infertility, and depression.
For a full list please consult your doctor.
So, finally, almost two years later, I went for help. My specialist is at MGH in Boston and I would suggest you do some heavy research and work with your gyno before seeing a specialist. You want to make sure the person you are seeing absolutely understands this particular endocrine disease.
So all of this (what I mentioned above) COMBINED with physical symptoms (the cysts) is usually what confirms a PCOS diagnosis. It’s called a diagnosis of “exclusion” meaning that the doctors have to rule out everything else combined with many symptoms to get an accurate diagnosis.
Here is what is tested when you are being diagnosed for PCOS:
I got all of the medical descriptions of the hormones, etc, from OBGYN.NET. My words are italicized in this section. OBGYN.NET will be the regular type.
***IMPORTANT: Every single woman’s hormonal levels are different. What is considered normal to one person is NOT normal to another.***
You can also follow the link to OBGYN.NET here:
- Ultrasound, to assess whether ovaries are enlarged and cystic (though not every woman has cysts to be diagnosed PCOS)
While this is not a blood test, a major indicator of PCOS is the presence of actual cysts on your ovaries. When your gyno does this ultrasound, she/he can see the cysts. You can go on the birth control pill (if appropriate) and that can make the cysts go away. At least that’s what happened to me. There are many other options but that was my choice of treatment option.
- LH Hormone and FSH Hormone
Lutenizing Hormone (LH) and Follicle Stimulating Hormone (FSH)
LH and FSH are the hormones that encourage ovulation.
LH and FSH levels are tested because many women don’t ovulate who have PCOS. It makes conceiving a child much more difficult though with the right medical attention, it is completely possible! These hormones are responsible for many things and I didn’t include all of the information here.
- Testosterone Levels
All women have testosterone in their bodies. There are two methods to measure testosterone levels:
- Total Testosterone
- Free Testosterone
Total testosterone refers to the total amount of all testosterone, including the free testosterone, in your body. The range for this is 6.0-86 ng/dl. Free testosterone refers to the amount of testosterone that is unbound and actually active in your body. This amount usually ranges from 0.7-3.6 pg/ml. Women with PCOS often have an increased level of both total testosterone and free testosterone. Furthermore, even a slight increase in testosterone in a woman’s body can suppress normal menstruation and ovulation.
- Blood tests, to detect elevated levels of androgens.
I’m on a medication right now that functions as an “androgen blocker” to help me with my hair loss and rosacea that came along with PCOS.
- Test for levels of chloesterol, testosterone, sugar levels, etc. are also run because many people with PCOS are insulin resistant. This is part of the weight gain cycle. Their bodies tend to break down sugar and it’s nearly impossible to lose weight.
Women with PCOS have a greater tendency to have high cholesterol, a major risk factor for developing heart disease. Cholesterol is a fat-like substance normally used by the body to form cell membranes and certain hormones. A high cholesterol level is considered greater than 200. Also, since the levels of good (high-density lipoproteins or HDL) and bad (low-density lipoproteins or LDL) are sometimes more indicative of a woman’s risk for developing heart disease, these levels might also be assessed.
There are many other hormones/factors that are checked to verify a PCOS diagnosis. This list names some of the biggies.
As I said, everyone’s road to diagnosis is different.
I went on a cocktail of meds, which I was very against at first. I already felt like a stranger in my own body and I didn’t want to add anything else foreign to the mix. I was wrong to think this way. They have given me my life back. My anxiety is back to normal (I was always neurotic, but what happened to me was NOT OK). I also try to run 20 miles a week and eat a mostly Mediterranean style diet. But it’s the knowledge of my syndrome and vigilance to an active lifestyle that has changed my life for the better. It’ll always be a struggle. At least I can share this story and maybe answer some questions for someone else who may think she has PCOS.
Here’s me at the height of my PCOS (deep breath, Rebecca):
Here is me 70 lbs lighter – running Ragnar! This was after my 7.6 mile run up and down HILLS OF TORMENT:
And here’s me from just a couple weeks ago. 81 lbs lighter:
SO here’s what I would suggest:
1. Talk to your doctor.
2. Read. Read. Read. Read. Read. Read everything you can from reputable sources, books, etc, and become your best advocate.
3. Hang out on PCOS message boards and chat rooms. Other people have great ideas and recipes for PCOS friendly food!
4. If you are insulin resistant – start to cook. If you’re on the run and don’t have time, start looking up restaurants and all of their ingredients so you can make PCOS healthy decisions on the fly. A PCOS bonus (sarcasm noted there, please) is the CONSTANT craving for carbs. FIGHT it. And eventually it will get easier.
4. If you are not a vegetarian, start loving fish!!
Feel free to e-mail me with any questions, though please save your medical questions for your doctor. I can’t help with that though I can point you to some books and websites I like!
Soul Cysters: http://soulcysters.com/
PCOS Diet Support – This website is AWESOME.
PCOS DIVA - http://www.pcosdiva.com/
I just did a quick search for PCOS and all of this awesome stuff came up!
Be YOUR best advocate. Search for the answers you need for your life and you will find the path to health. Running is hard. I used the Couchto5k running app to begin and now am running 10 min miles! I literally ran myself back to health.
Best of luck to you!