My life with PCOS by Bijal Patel

Just like every girl, I too had dreamt of my perfect wedding. However, unlike most girls I did not go on a diet before my wedding. Always a 5’ 5” 120 pounds girl, diets and weight management was never my passion. What was my passion was food! Burgers, pasta, pizza, turkey sandwiches, wings, desserts, cheese, Asian food, and most of all…my favorite of all time; bread!

My parents always kept my sister and me pretty happy. I was carefree.  Food was always surrounding me so I did what anyone would do; I went straight to it and satisfied my soul each time. So why would things be any different before my wedding I thought? I ate to my heart’s desire with no guilt.  October 31, 2015 I was married to the most wonderful and kindest man. Every time we went on vacation or had a little getaway, he would find the best places with the best bar food!

One day on a business trip to London in February 2016, my husband calls me and tells me that his mother has been diagnosed with stage 4 brain cancer. I take the next flight over and fly home.  As a team, my husband and I had the responsibility of my mother in law’s care as well as my father in law. My father in law was in no state to care for himself, I took a year off work and stayed home while my husband went to work. In May 2016, everything was settling down. We had a routine; we would get up at 3 am sometimes and change my mother in law’s clothes and diaper.

In June 2016, I started having this bad cough. It sounded like I had emphysema, and after a short while I had a very hard time breathing. I went to ER for the first time. They put me on a nebulizer and took CAT Scan of my lungs, everything seemed clear. I was diagnosed with acute bronchitis and discharged with a prescription.  About 2 weeks later, I was still coughing and it was getting more intense and now it was starting to hurt my chest and taking away my entire energy. With my health developing and taking care of my mother in law, my body wanted to just give up. My only real support was my husband.

I went to ER again in early July 2016, with a more intense cough and same symptoms. I was starting to get mild stage of brain fog. Once again, I was diagnosed with acute bronchitis. This time they prescribed me with an inhaler and stronger medicine.  2 weeks later, I was still coughing and hurting. Now I was becoming very emotional. Depression started to hit me and I did not know what was the matter. So I decided to call my primary doctor and see if she has any idea. I was in the room with her and I just could not breath. I could not get 1 word out properly.  She knew I was on birth control pills at that time but that was strictly for birth control so she called my husband and told him that she was going to call an ambulance and send me to ER because she suspected a blood clot in my lungs.  A short while later, my husband and father in law both came by my bed.  It turns out my mother in law had to be rushed to ER as well.  Things we taking a huge turndown now! My X-ray and CAT Scans all came back clear. I was stabilized with a nebulizer and discharged.

I was feeling really low and awful at this state. My husband and father in law called all their doctor friends, they described my symptoms and the medicines I was prescribed and they all said the same thing…this is not bronchitis. They verified that with the combination of medicine I was taking and the time period that went by, if it was bronchitis I would have been cured by now.  Now I was hit with a reality check, I stopped smiling, I started arguing with my husband for the silliest things, I even threaded to walk out on him. I was crazily insane to be very honest! I gained 15 pounds by this time. The only thing that fit me were my earrings! We became totally strangers to each other.  Then I restored to the one thing that always satisfied my soul, food! I was hurting my body and myself not knowing that I should stop.

By mid July 2016, I realized that I had missed my period for 4 months. I automatically assumed I was pregnant. I took 10 home pregnancy tests, feeling confused and dazed as to why they all came back negative. I said this is impossible.  Then I remembered, my mother had started her menopause at 34, I was 34! I said to myself this cannot be happening to me! I was too young and I had dreamt of having my own kids ever since I helped raised my sister’s boys (who I called my vey own). I cannot describe the pain and anxiety I was going through.  I was crying for no reason every night.  Depression and anxiety took my mind, body and soul.

I went to see my gynecologist a week later. She examined me and decided to do a ultrasound of my ovaries and a particular test which requires a camera to be put inside to look at my uterus and ovaries a bit closer. A week later I went back for my results. I was hoping it was just a panic attack and nothing more. This time, my husband decided to come with me. On August 2016, my doctor told me I had cysts on both my ovaries. In addition, I have PCOS which explains my missing periods, mood swings, anxiety, and chronic cough. Then she told me the worst of all, I have a bicornuate uterus, which means I have a double horn uterus. As a result, PCOS won’t let me get pregnant and my bicornuate uterus won’t let me bare a child. The ground below my feet shook. I was thinking what is this PCOS and bicornuate uterus stuff? My doctor took time and patience to educate my husband and myself. By the end of the appointment, my life had changed forever. I was heartbroken and felt punished.

I went to see an endocrinologist a week later. She told me there was no way I had PCOS and coughing is not related to PCOS. She ordered 6 tubes of blood samples. I was so confused. How can she tell me this in my first meeting with her? When I went for the results, it was a 10-page result. I was a bit surprised that now she was leaning towards PCOS. My hormones were beyond out of control; my AIC was a 6, my massive amount of weight gain in a short time and my missing periods. By the end of that appointment I decided to never see her again, she made me feel so uncomfortable.

While searching for another endocrinologist, I began having massive chest pains. My heart rate would increase so high during my workouts that I would have to stop. I had a membership at Orange Theory; if you are familiar with that gym you know how intense and hard it is.  One day, after my class I almost collapsed while walking to my car. I knew that diabetes and heart disease are the number 2 side effects of PCOS by now. So I went to see my father in law’s cardiologist. I told him my entire history and he scheduled EKG, Echo Cardiogram, Stress test everything! Results are that I have low heart rate. I was advised no running, no jogging, and only walking along with a healthy diet.

I finally found a new endocrinologist, the head doctor in the same practice. She was amazing. She recommended a gluten free diet along with a PCOS diet. She explained that most gluten free products contain a lot of starches and leavening agents, which are even worse for you. Basically, I switched to a Paleo diet but adding legumes. I don’t know what was harder, the pain or the new diet.

On September 6, 2016, my mother in law passed away. Things were hard for everyone. We all neglected our life and diets.

By March 2017, life was slowly, becoming “normal”. My husband and I both were getting more and more comfortable with our new diet. We were learning a lot about the everyday choices people make the better choices that can be made. We started walking in the morning before his work and I started back working again. It was a tad harder when I was travelling but I adjusted.

End of July 2017, I started getting major stomach pains, extremely lower back pains, and constipation and diarrhea. My thirst was constant and my urination had increased by 4 times, I would go to the bathroom 4-5 times at night.  I was starting to get my brain fog again; my coughing was back more intensely, my mood swings, and basically all my symptoms were back. I couldn’t understand why it was all coming back. I was managing everything so well. Then I decided to go see a GI, he first suspected crohns, ulcers or IBS. He said the only way to be sure is endoscopy and colonoscopy.  I did both and it all came back clear. He suggested I might lactose or dairy intolerance.

I switched to lactaid milk, it helps me for the most part. My pain is gone and my stomach is a lot better. Currently, I am awaiting my final appointment with my GI to verify my intolerances.

Everyday is a bigger battles then the day before. Every now and then, there’s something new. This experience with PCOS has changed my life. My husband is my rock. Everyday we argue who loves the other more, I always tell him I want it to me and it’s not fair that he gets the last word. But deep down I know in my heart that he really does love me more.  I still sit in my office and roll out a few tears every now and then. I still feel like an outsider and very needy at times. The PCOS Blog gave me courage and hope to overcome it all.

Everyday I see pictures of people posting pictures of their children and have the cutest captions. I never tell anyone not even my husband, but I do get jealous all the time. I feel as if my life was robbed from before it even begun.

Eating out is hard and going to someone’s house is even harder. My close friend invited me to dinner after so many declines from me. I was scared at first. But she knew about my PCOS and diet. However, cooking for us would not be easy or fair to her. After thinking about it day and night, I finally had the courage to ask her if I can bring our own food. I even volunteered to include her just to make it more comfortable. She agreed which made it a little easier on me.  With a little courage my husband and I took our black bean pasta in red sauce and flax seed bred sticks. That was the first time I have taken my own food. I was sad to be honest. But I was thankful, as she was supportive. Now she is demanding I give her a recipe so she can cook for us.

We encountered a similar situation at my cousins wedding. I come from an Indian American family, so our events usually last 4-5 days. I fly home to New Jersey for a week to attend to my cousin’s wedding. Most of the events, I cooked my own food at home and ate it quietly in the corner without creating a scene. It was not so difficult because it was at my house or my aunt’s so I felt comfortable enough to warm up and have my meals. The real struggle came, when we moved to the Hilton for 2 nights on Friday late morning. The hotel restaurant was not entirely diet friendly. My husband was flying in Friday night to attend 2 of the events.  I had marinated chicken and shrimp on Thursday night to prepare. I woke up at 6:30 am on Friday and made boxes for my husband and myself. I made Friday night dinner, Saturday lunch, and Saturday dinner. It took me 4 hours to wash the vegetables, cut them and cook them. I also made quinoa.  We had decided that we would warm it up in our room when time came. It was also hard on me because I was starting to feel like an outsider again. We assumed that Sunday brunch we would find at least eggs. There was none! We had couple sips of coffee and headed toward the airport.

We tried to incorporate our family to eat our food just so they don’t feel awkward, it turns out no one really likes it. They tell you at first that they love it and the next time it’s time to eat it they decline.  It’s definitely frustrating and painful at times, because all you want to do is live a normal life. But what is normal? Things like pizza, bread, and fish and chips can never be replaced. But us ladies have to find a way to satisfy ourselves.

Arranging and organizing the little details to accommodate us is hard even today. I have to make that extra effort because when it comes to family gatherings or events, no one remembers that we have food restrictions.

Currently, I take probiotics, vitamins, metformin 1500 mg, high blood pressure 25 mg, Singular 10, Zantac twice a day 150 mg and Metoprolol 25 meg. I check my sugar every morning; overall I have managed to control my sugar and hoping to lower myA1C. I have a follow up with my GI who wants me to take a digesting test, which is a pill with a camera in it to look at the digesting process to rule out crohn’s disease.

Eating out is a major struggle for me. I have to look for gluten free and lactose free meals. Before being lactose free, I would simply get a salad. However, now that has become a challenge because most dressings have milk and/or yogurt.   I find myself pondering on the opportunity of more food options and hope that with the growing population with constant health issues the restaurant and food industry will produce better options. Even the expensive products are just as bad with all the starches.

A little bit of advice is, is always listen to your body. If something seems odd, don’t wait and check it out.  Always do research on new items and new recipes. The key to success is making it fun. The more variety you bring to the table, the more satisfying the PCOS diet can be. In addition, find at least that one person who can lean on day or night.  No matter how strong you were or are; PCOS will give you weak moments where you will break down.

This piece was written especially for the blog this month by Bijal Patel, whom I met via one of the PCOS forums. I hope you found it as moving as I did. I’m incredibly grateful to her for taking the time to tell us her story as part of this month’s campaign ~ Rivka

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