OpenHealth Q&A

Seeking Guidance on Self-Advocacy in Health Matters

I'm in search of guidance on how to effectively advocate for myself in the quest for appropriate answers regarding my health. I am a 29-year-old woman who has endured severely heavy menstrual cycles since I was just 12. Initially, my periods lasted around seven days with an overwhelming flow, often necessitating the use of extra-long, super absorbent pads borrowed from my mother, which sometimes still left me struggling to manage. When I turned 16, I began using birth control, and though it alleviated some symptoms, the heavy bleeding continued alongside other troubling signs. In 2020, I found myself in the emergency room due to excruciating pain on my right side, accompanied by a fever, vomiting, and significant bleeding. An ultrasound revealed the presence of a complex cyst measuring 4.3 by 4.8 by 5 centimeters; I was advised to follow up on this discovery, but unfortunately, I did not—an oversight I deeply regret. By 2021, I observed a shift in my cycle; what used to be a heavy seven-day bleed transformed into a much lighter duration of just 2 to 3 days. The discomfort began to manifest about a week before my period, and I experienced debilitating leg pain during and after my cycles, along with severe ovulation pain that would leave me curled up on the bathroom floor, often inducing vomiting. After a pelvic exam and reviewing my symptoms, I was diagnosed with endometriosis. In 2022, I returned to the ER because of recurring symptoms and right-side pain once again. Another ultrasound was performed, but the doctors were unable to visualize my right ovary. They reported my endometrial lining was 1 centimeter thick and exhibited slightly heterogeneous characteristics. As we move toward 2025, I am actively collaborating with my primary care physician to address my persistent symptoms, which have recently worsened. In the past month, I have been experiencing a constant sensation of fullness or bloating in my lower abdomen, along with relentless fatigue resembling flu-like symptoms, joint and back pain, irritable bowel symptoms (alternating between constipation and urgency), extreme thirst, frequent urination, and a recurring rash. Additionally, my periods have become irregular, something I had never encountered before, with some instances of only minimal bleeding lasting just a few hours. Most recently, I was six days late, experiencing a peculiar light brown discharge with mucus that had completely resolved within two days. A few weeks ago, my primary doctor ordered blood tests to examine my liver function due to my history of elevated bilirubin levels, alongside tests for autoimmune conditions and diabetes, all of which returned normal results. The only anomalies were elevated saturation ratios and a slightly heightened CMV IgG level. She also arranged for a CT scan of my abdomen, gallbladder, and liver, which reported slight issues, specifically finding follicles in my reproductive system. I'm scheduled to meet with a gynecologist next week and would greatly appreciate any suggestions for tests I should consider requesting or just some words of encouragement from anyone who's faced similar challenges. Your insights would mean a lot as I navigate this ongoing health journey.

Answers (1)

3/25/2025, 1:50:56 PM

OpenHealth AI

It's great that you're seeking to effectively advocate for your health, especially after experiencing such a complex and distressing journey with heavy menstrual cycles and associated symptoms. Your proactive approach is vital in managing your health. Here’s a structured way to navigate your upcoming appointment with the gynecologist and advocate for the care you need.

Main Points:

1. Prepare for your gynecologist visit by documenting your symptoms and concerns.
2. Consider discussing specific tests and follow-ups that may be relevant to your situation.
3. Know that self-advocacy is important, and it's okay to ask questions and seek clarity on your health.

Explanation:

Your past history with heavy menstrual bleeding and subsequent endometriosis diagnosis raises legitimate concerns that merit thorough examination and discussion. You’ve rightly identified that your symptoms have evolved, and the recent changes, including the bloating, fatigue, joint pain, and recent alterations in your menstrual cycle, warrant careful attention.

Next Steps:

1. Document Your Symptoms:

   • Keep a detailed log of your symptoms, including the date they occur, their severity, their duration, and any possible triggers or relief measures. This can help the gynecologist understand your situation better.

2. Prepare Specific Questions:

   • Consider asking about:
     • The potential link between your symptoms and endometriosis.
     • Whether further imaging (like MRI) might be warranted given your complex history.
     • Evaluation for conditions such as adenomyosis or other pelvic health issues.
     • The need for referrals to specialists (like a colorectal surgeon if your bowel symptoms worsen).

3. Discuss Test Options:

   • Ask about the following tests if they haven’t been done:
     • Hormonal level assessments to investigate potential endocrine issues (like thyroid function).
     • Tests for addressing autoimmune concerns, given your elevated CMV IgG levels.
     • A laparoscopy may be considered for direct visualization and treatment if endometriosis is present.

4. Express Your Concerns:

   • Talk about your ongoing issues, particularly the irregular periods, bloating, and erratic bowel symptoms. Make sure your doctor understands how these issues affect your daily life.

5. Be Assertive:

   • If you feel your concerns aren't being addressed or that you're not progressing towards a diagnosis or treatment plan, don't hesitate to voice your feelings or ask for a second opinion. You have the right to feel heard and understood.

6. Plan Follow-Up:

   • If the doctor suggests treatments or follow-ups, make sure to clarify how you’ll be monitored and what the next steps will be. It can be useful to summarize what you’ve discussed and any agreed-upon plans.

Reassurance:

Navigating health challenges can be overwhelming, but you’re taking the right steps by actively participating in your care. Remember, your voice is a powerful tool in your health journey. Engage openly with your healthcare provider, and don’t hesitate to express all your concerns and symptoms. You deserve comprehensive care tailored to your needs.

Keep in mind, you’re not alone in this process—many others face similar challenges and ultimately find effective pathways forward. If you have any other specific questions or need further assistance, feel free to reach out.