PCOS Relief: Roxana’s Story of Diet, Acupuncture, and Self-Advocacy

"If nothing else, listen to yourself and advocate for yourself. Always," says Roxana Damas, a beacon of resilience for those navigating the tumultuous waters of polycystic ovary syndrome (PCOS). Affecting millions of women globally, PCOS often remains shrouded in confusion and misdiagnosis.

Roxana's story illuminates the often-overlooked challenges of living with PCOS, from its early, elusive symptoms to the frustrating battle with medical gaslighting and the journey to effective treatment. She shares all of her PCOS symptoms and what actually helped her find relief.

Early Signs of PCOS: Recognizing the Symptoms

Roxana's experience with PCOS began early, though she wouldn't receive a diagnosis until much later. 

A childhood photo of Roxana Damas, showing her during the early years when she first began experiencing symptoms of PCOS, though undiagnosed at the time.

"Interestingly enough, I think the symptoms actually started as early as 8 years old, even though I didn’t know it at the time," Roxana recalls. "I recall a conversation my mom had with one of the doctors, where he mentioned that she would need to start talking to me about getting my period soon."

Even as an elementary school student, Roxana's body was showing signs of early development and weight changes - common early indicators of PCOS. However, it would take years before these symptoms were properly understood.

PCOS Symptoms: A Rocky Beginning

As Roxana entered her teens, her PCOS symptoms became more pronounced, especially related to her menstrual cycle. "Once I turned 11 years old, I had moved out of the country,” says Roxana. 

“My parents had sent me to live with my grandmother for a while, as they were moving back to their home country, El Salvador. I started noticing many changes, such as losing weight easily and changes in my diet.

Then, I got my period for the first time—it started around January and disappeared completely by September of that same year"

This irregular menstrual pattern is a hallmark of PCOS. However, Roxana was still confused and uncertain about what was happening to her body.

Roxana's PCOS symptoms included:

1. Irregular periods: Starting from a young age, Roxana had very irregular menstrual cycles, sometimes going months without a period.

2. Weight gain and difficulty losing weight: She experienced unexplained weight gain, especially when visiting the US, and had trouble losing weight despite diet and exercise.

3. Severe menstrual pain: When she did have periods, they were extremely painful and debilitating.

4. Prolonged bleeding: At one point, Roxana experienced continuous bleeding for about 9-10 months.

5. Insulin resistance: This was implied by her mentioning difficulties with weight management and later referencing issues with insulin resistance.

6. Hormonal imbalances: While not explicitly stated, this is suggested by her irregular periods and other symptoms.

7. Fatigue and low energy: Roxana mentioned feeling extremely tired and having difficulty maintaining energy for daily activities.

8. Mood changes: She experienced depression, which can be associated with hormonal imbalances in PCOS.

9. Inflammation: Roxana mentioned dealing with inflammation issues related to her PCOS.

10. Vitamin D deficiency: She noted having persistently low vitamin D levels despite supplementation, which is common in PCOS.

These symptoms significantly impacted Roxana's daily life, affecting her work, singing performance, and overall well-being. 

The PCOS Weight Struggle: More Than Just Diet and Exercise

While weight fluctuations are common with PCOS, Roxana's experience highlights how complex the issue can be: "I had a lot of numbness in my legs and experienced many weird symptoms that you’d normally read about on the back of birth control pills,” explains Roxana. 

 "I'm very mindful about making sure that I have a certain amount of protein on a day-to-day basis."

“I kept asking myself, 'Is this normal?' At that time, I was really at the peak of my performing career—training or performing on stage every day. It made no sense to me that I was gaining so much weight.”

Despite an active lifestyle, Roxana struggled with unexplained weight gain - a frustrating reality for many women with PCOS. 

Medical Gaslighting: The PCOS Diagnosis Struggle

One of the most challenging aspects of Roxana's journey was the repeated dismissal of her concerns by medical professionals. 

Roxana faced a frustrating situation with her healthcare providers when trying to address her concerns about birth control. She vividly recalls, "I went in there and said, 'I need my body to function. Can you please get me off of this birth control? I'm feeling these things impacting my body.'" 

Instead of addressing her concerns, the nurse practitioner called in another nurse practitioner, and eventually, the head of the clinic joined the discussion. Despite her pleas, they pressured her to remain on the birth control pill, leaving her feeling overwhelmed and dismissed. "At this point, there was me and four of them in this little room, and it felt super claustrophobic and abusive."

PCOS Treatment: Finding What Works

Roxana's path to effective PCOS treatment was long and winding. She tried various approaches, including:

1. Birth control pills (which caused side effects)

2. Metformin (which she couldn't tolerate)

3. Dietary changes and research studies

4. Alternative treatments like acupuncture

Alternative therapies seemed to work well for Roxana, she shares: "Acupuncture has saved my life and prevented me from needing more surgeries or more complex treatments. However, in the States, acupuncture is primarily used for specific issues. When it comes to women’s health, its application might not be widely understood. But I can tell you that the right acupuncture treatment, at different stages, has made a night-and-day difference for me. Certain symptoms have been completely healed just from acupuncture.”

Her experience highlights the potential benefits of combining conventional and alternative treatments for PCOS management.

PCOS Diet and Lifestyle: Finding Balance

Roxana's journey with PCOS highlights the critical importance of finding a personalized approach to diet and lifestyle changes. She quickly learned that what works for one person may not work for another, underscoring the need to listen to her body and adjust accordingly.

Roxana emphasizes, "I'm very mindful about making sure that I have a certain amount of protein on a day-to-day basis. I can always tell when I don't." The vigilant attention to her body’s responses allowed her to discover that practices like lymphatic drainage massages made a significant difference in managing her symptoms.

When it came to supplements, Roxana found that understanding how her body absorbed nutrients was crucial. Despite following a healthy diet, she discovered she wasn't getting the necessary nutrients due to absorption issues common in people with PCOS. She shared, "Supplements are necessary. And understanding that our bodies, for PCOS especially, have trouble absorbing our minerals. So here I am eating everything that I think I'm supposed to, but I'm not." This realization led her to work closely with healthcare providers to identify potential deficiencies and address them effectively.

"There was no one there who could understand what I was going through... You need the emotional support"

Roxana also participated in a research study that required her to make drastic changes to her diet and lifestyle, meticulously tracking her meals and undergoing regular blood tests. However, despite her commitment, the study did not yield the expected results. "By the second part of that test, just to see our progress that day... they would pull blood from you, like, every minute," Roxana recalled. 

The intense nature of the study, combined with the lack of emotional support, left her feeling drained and unwell. The head of the research project later informed her that she was one of the few participants who showed no improvement, leaving Roxana feeling defeated and without viable treatment options.

This experience taught Roxana a valuable lesson: the importance of emotional support in managing PCOS. The study was heavily focused on the technical and medical aspects, neglecting the psychological impact of such a rigorous process. "There was no one there who could understand what I was going through... You need the emotional support," she reflected.

PCOS Awareness: The Importance of Advocacy and Hope

Roxana's story underscores the critical need for greater PCOS awareness, both among the general public and medical professionals. She encourages others: "If nothing else, listen to yourself and advocate for yourself. Always."

Despite the challenges, Roxana's story is ultimately one of hope and perseverance. She shares: "I just feel better now. My body and my system is probably functioning as it should have at early stages."

Through a combination of medical care, lifestyle changes, and alternative treatments, Roxana has found a way to manage her PCOS and reclaim her health.