The PCOS Latina: No Birth Control and Not Trying to Conceive

I am a 25 year old Puerto Rican Mexican Latina living in Georgia, USA, who was diagnosed with PCOS at 21 years old and has been off birth control for 2.5 years (and no intention to go back!). I have no desire to get pregnant for at least five years. I also do not have children. It’s just me, my boyfriend, and my dog.

My PCOS is at a point where I can proudly say it is managed. I struggle with maintaining weight loss with the flares, but overall I do feel healthier than I have since even before my diagnosis.

Navigating any chronic disease is difficult regardless of race and socioeconomic status. I personally struggled with Latino cultural influences where family members act like health issues and mental health do not exist. It's all very hush hush, ya know? I was also never taught a healthy relationship with food which directly affects PCOS management. Couple that with family disconnections or lack of a family history, I struggled. I was not raised by my mother and had no relevant health information regarding my maternal family. My mother’s parents were either in prison or were also disconnected from her. Health information regarding my paternal family was extremely limited.

Missing health information that directly affected me and not having the support of females in my family who experienced similar issues created an obstacle in an already confusing journey. I’m here to tell you that it is incredibly possible to learn your body, PCOS, and lifestyle changes despite that while maintaining everything you love about your culture and foods.

If you have experienced similar family and cultural barriers, I empathize with you. I did not find any culturally relevant PCOS information when I started my journey. Nor did I find much for girlies not wanting babies, birth control, or meds.

I’d like to change that.

When I was first diagnosed, I had no idea what PCOS was to the point that I believed I was pregnant when I lost my period and rushed to the GYN.

Surprise! Not pregnant. Just a life altering diagnosis with some four letter hormone disorder that I’d never heard of, did nothing to cause, and had no cure. Cool cool.

When I started my PCOS research, everything was geared toward birth control, metformin, progesterone injections, trying to get pregnant, and crunchy holistic treatment.

Where was the middle ground? Where were the girlies in their 20's who were in the middle of grad school, trying to maintain their culture, didn’t want to get pregnant, and didn’t want to go back on birth control or strong meds?

My goal is to take you through my experience and lessons with PCOS. It is too long to fit in one article as it ranges from medical episodes I experienced at 18 years old that I had no idea were related to my PCOS diagnosis at 21 years old until much more recently. I had to piece together information from several different sources. Not everything worked for me, but the trial and error taught me so much valuable information about myself. I have many Do’s, Don’ts, and Maybes to share.

Each body is unique but my hope is that you gain some tips that do apply successfully to your life. Maybe you’ll read some things and say “Hey I’ve experienced that too but didn’t know it affected PCOS.”

Getting PCOS stories and advice in bite sized pieces makes it easier to apply them and is far less intimidating.

Some practices helped while some were more effort to upkeep than I found worth my time, effort, and sanity. Balance is the largest part of truly managing a chronic disease. Your time and sanity is just as important as your money and health. Do not sacrifice one for another. You will burn out and likely end up right back at the beginning.

So let’s start at the beginning.

What actually is PCOS?

Polycystic ovary syndrome, or PCOS, is a hormone disorder that knows no difference between culture, age, or socioeconomics. It has no cure and it has no known cause. The only common factor is women of typically child bearing age. This hormone disorder creates insulin resistance in the ovaries that can affect A LOT throughout the entire body, including fertility. Other symptoms include but are not limited to acne, body aches, weight gain, bloating, inflammation, excess hair growth, mental health issues, irregular period, and hormone imbalance.

PCOS also significantly increases your risk of type 2 diabetes, so it's crucial to have your A1C and sugar checked annually to make sure you are on the right track. I just had mine checked this week where I had an A1C of 5.1% and a non-fasting blood sugar of 100. Talk with your provider about keeping regular tabs on this.

PCOS can be diagnosed with a combination of the following symptoms: irregular menstrual cycle, hyperandrogenism (high testosterone/androgen levels in blood work that can also present in excess facial hair), and polycystic ovary morphology (aka chocolate chip cookie ovaries - what an image, right?).

In the USA, providers only need to confirm two of three PCOS indicators to award a PCOS diagnosis. In some countries, all three indicators are required. I believe this is the case in Australia based on a podcast I listened to called THE PCOS GIRLS run by Brigitte and Mel. They were a wonderful first resource for me when I was new to the Cysterhood.

Due to the level of blood work and radiology scans, a PCOS diagnosis may not be as accessible to some potential cysters, which can be incredibly frustrating when you have no idea what is happening with your body. Currently, around 5-6 million women have been diagnosed with PCOS and another 70% remain undiagnosed. That's an incredible high number to not have many answers, but we learn more with the more we try.

Discussions regarding PCOS do mostly come in terms of women. These are important distinctions to make when discussing PCOS, ovaries, fertility, and hormones as pertaining to female hormonal disorder. However, it is important to understand that not everyone who identifies as a woman would be affected by PCOS, and not everyone affected by PCOS identifies as a woman. There is a beautiful intersectionality in womanhood that deserves to be recognized.

“Cyster” is a common reference to someone with PCOS. Cysters and The Cysterhood are larger terms that refer to those with PCOS and the community. These are great places to look for support and information. Always verify information yourself and confirm medical decisions with your healthcare provider. The internet can be a great place, but also full of much unverified, questionable advice.

My goal is not to give you The One Stop Shop Golden PCOS Guidebook. Nothing like that exists and if someone tells you otherwise, they’re probably trying to sell you something. You can learn everything to manage your PCOS for free. Without fancy high end supplements and courses.

A perfect PCOS guidebook doesn’t exist because every single body is different. What my body was receptive to may be different for yours. This is especially true depending on if you choose to be on birth control or if you are actively trying to conceive. In my case, I have been birth control free for over two years and I have no plans to conceive for at least the next five years.

Unfortunately, many health care providers tend to push the birth control, metformin and hormone injection route if they are not knowledgeable in lifestyle PCOS management or don’t take time to educate patients. Especially if you’re not trying to conceive immediately, birth control is the perfect quick solution for some healthcare providers.

From what I’ve learned, that can be a bandage treatment. Those courses of treatment only work for as long as you take them. First, your body is not truly healing because you have a false sense of health and may not see the need to pursue additional PCOS management. Second, if you ever have to stop them for any reason (trying to conceive, medication side effects, loss of insurance coverage, etc) then you start at square zero with PCOS symptoms because the medication was masking the symptoms, not healing them.

I did not want to take medication for years without ever truly healing my body. When I do want to eventually conceive, my body may experience the withdrawals of those medications, their side effects, and unmanaged PCOS symptoms. With PCOS already having such a high infertility rate (around 70%), I did not want to add more odds against me. Even if I change my mind and decide to not have kids, I still do not want a false sense of health.

The unmedicated route is purely my decision and does not mean the medication route is wrong. However, you should make lifestyle changes in combination with the medication with the goal of improving your health and eventually weaning off the medication.

Think of the medication as a short term tool that will aid you in getting to a place where you are healthy enough to manage the PCOS without them. The negative side effects of long term birth control and metformin use are beginning to arise. Not to mention the regular side effects. For example, metformin can have negative effects on the stomach and kidneys.

I urge you to not treat one disease in exchange for the onset of another.

No cure does not equal no treatment.

Learning to manage your PCOS with healthy and natural habits will take time, consistency, and research. However, you may be surprised with how much you ultimately learn about yourself, your health, listening to your body, and nutrition. In my experience, it set me on fire to learn more and more once I got past the initial feeling of dread and drowning while trying to learn where to start.

The key: start anywhere. There is no wrong place to start with your self-education. I started by watching animated YouTube videos and reading short articles that describe what PCOS is and what parts of the body it affects. Find some podcasts to absorb while you go for a walk or commute to work. There is much to learn beyond the name because PCOS affects much more than just the ovaries. But we will get more into that.

My Diagnosis Timeline and Symptoms

In October 2020, twenty year old me missed her period. This was unusual for me as I was regular to the exact day. One or two negative pregnancy tests later, I chalked it up to a mishap. Around this same time, I began to experience some of the worst acne I have ever had. It was spread through my face, chin, neck, chest and back. I was no stranger to acne when my cycle was approaching, but this was worse than usual.

November 2020 comes and goes. I turn twenty-one and things seem fine enough. I’m bloating and notice extra weight, but I am also an at home grad student in the middle of COVID. I had just moved across the country to Tucson, Arizona, which was a hotspot for COVID. I was a public health grad student and had respect for the ongoing pandemic, so I was more homebound than I liked. Plus, being an unemployed broke college student can limit your outgoings a bit. I didn’t think too much of the weight gain either. Plus, I was isolated from my family as I had just moved 2000 miles away with my boyfriend, so there was a lack of support element. I was toughing this whole thing out and learning on my own.

December 2020 is when I started a seasonal part-time job at an Amazon warehouse. All of a sudden, I flipped my entire sleep schedule for this overnight, physically demanding role. This is where the obvious flare seemed to really start. I was bloated, tired, stressed, and had severe back pain that I couldn’t even bend down to slip my sneaker on. This was a polar shift. Needless to say, I lasted two weeks in this job.

Fast forward to March 2021, I’ve missed another two periods (for a total of three missed periods since October 2020). Something is obviously wrong and I am convinced I am pregnant. Why else would I miss two months of my cycle in a row and have all these horrible side effects? Not to mention that my mental health was off the rails and I was constantly hungry and snacky. Mix that with a three year relationship coming to an end and the second semester of grad school, I was severely worried that all seven negative at-home pregnancy tests just had to be wrong. I began thinking I was some weird pregnancy case and needed a blood pregnancy test from a doctor.

March 2021 is when I first saw the GYN about this concern. If you want to avoid the embarrassment I had, then no, there is no difference in the blood pregnancy tests. If the seven urine tests I took at home were negative, then I was in fact…not pregnant.

So what’s wrong with me?

The GYN asked if I have ever heard of PCOS. No, I definitely had not. I was so stuck in my head that I still thought I could be pregnant. I did not want to be pregnant, but I didn’t want to ignore it if I was.

Mrs. Very Pregnant GYN sent me off for some blood tests and a transvaginal ultrasound to confirm her PCOS suspicions.

NOTE: Free testosterone and regular testosterone should both be tested for in the diagnosis of PCOS. If you are pursuing a PCOS diagnosis from a general healthcare provider, please advocate to have both ordered on your blood work if possible. I did not know the difference, but am grateful to have had a competent GYN.

I had my blood drawn, which also showed I was not pregnant (since I couldn’t be convinced otherwise, she still ordered it). My blood work also showed high testosterone, which is one of the three indicators of a PCOS diagnosis. Paired with the irregular periods, I now had two confirmed indicators.

Next stop, the transvaginal ultrasound. This is a slightly invasive, non-painful, ultrasound that can be costly depending on your insurance status. The wand is inserted into the vagina in increments to take different sets of images. It is looking for those chocolate chip cookie ovaries…I mean polycystic morphology! It does NOT hurt, but it is understandably intimidating if this is a new concept to you.

Depending on cost and level of comfortability, you can ask your provider if it is necessary. My insurance would not fully cover it where I went, so I paid over $200 for mine. Just to later hear from my provider that it wasn’t necessary since I already had two of the three indicators. Ugh! So it never hurts to ask. You can also call your insurance company to ask if there are facilities where it will be fully, or mostly, covered. If your insurance covers it and you don’t mind the scan, it can’t hurt to have it done. I truly did not mind it.

Spoiler, I had chocolate chip ovaries.

Three out of three criteria later, I’m back at the doctor’s office in April 2021 and have a new PCOS diagnosis that I have no idea what to do with.

In that same visit, the GYN offered me to get on birth control, 2000 mg of metformin, and possibly have hormone injections. 2000 mg of metformin is how much my 400 pound type 2 diabetic dad takes. F*ck that! There had to be a stepping stone to such a severe suggestion, right??

The GYN jumped straight to offering only medication and telling me to lose weight. We’ve all been there. If you are a cyster, then you know that losing weight is pretty impossible because of the insulin resistance in the ovaries.

I kindly asked her to give me three months to see if there was anything I could do on my own to work on the symptoms. She agreed and informed me that as long as I am having a period at least every three months, then she isn’t too worried. If the uterus does not shed its lining through a menstrual cycle at least every three months, that increases the risk of endometrial cancer. Which is when a medication intervention would be strongly considered.

Let me tell you, three months makes a huge difference when you start your research and get passionate about your health. Those three months showed a lot of improvement, which is my excitement to share what I did in bite sized pieces so you can see what fits with your lifestyle.

There are certainly ways to maintain your cultural foods and social life while managing your PCOS. As a Latina who loves her sugars, carbs, dairy, caffeine and alcohol, there is a middle ground that will leave you satisfied and feeling so much better symptom wise.

With each subsequent article, I will share more detailed approaches to what I did, discontinued, attempted, and failed at.

In the meantime, here are a few resources I found very helpful when starting out:

1. Ovasitol or Inositol supplement as an alternative for metformin in managing the insulin resistance in the ovaries. It's extremely effective, more natural, and endorsed by GYNs (even mine). I've taken it for over two years and it's helped so much
2. Start your morning with a lot of protein to keep you full and better manage blood sugar and cravings. Add an Equate protein shake or powder to your coffee.
3. Low intensity exercises or walks that won't spike cortisol levels.
4. The PCOS Podcast by A Cyster & Her Mister by PCOS Weight Loss. Uplighting content from a cyster and her husband on how to navigate PCOS.
5. The PCOS Girls Podcast by Brigette and Mel
6. The PCOS Repair Podcast by Ashlene
7. Meals She Eats - an Instagram Page @mealssheeats
8. Fit for Life: A New Beginning by Harvey Diamond - A book that discusses cell damage, toxins, inflammation, and how diet can rectify this at any stage

Do not get overconsumed in trying to figure it all out in the first week. Pick one podcast episode that looks interesting and put it on while you go for a low intensity exercise or walk. This journey should not be overwhelming or increase your cortisol levels. The ultimate goal is to keep the inflammation, A1C and cortisol levels controlled.

More to come. ¡Hasta luego!