OpenHealth Q&A

Seeking Answers to My Ongoing Health Concerns

I am a 27-year-old female experiencing a range of troubling health issues. My past medical history includes a bout of hepatitis A (or possibly autoimmune hepatitis; my physician mentioned that the tests couldn't differentiate between the two), which caused significant illness for several months in 2021. My maternal grandmother had autoimmune hepatitis, and I also contend with hyperinsulinemia—without the presence of diabetes—alongside two hypoglycemic seizures in the same year. Additionally, I've struggled with hidradenitis suppurativa since I was nine years old and have tested positive for both strains of HSV since I was sixteen. In terms of family health history, my mother has battled cervical cancer and leukemia, while my maternal grandmother was diagnosed with colon cancer. Both of my maternal aunts have faced ovarian cancer. Over the past couple of years, I have generally felt unwell. It began with significant pain during tampon insertion and intercourse, leading me to consult with my OBGYN. An assessment revealed that my IUD had shifted down to my cervix, causing the discomfort, and I was also informed that I have a bicornuate uterus. After the removal of the IUD, my physician assured me that the pain would subside, but two years later, it persists despite engaging in pelvic floor therapy. I’ve additionally experienced issues with urinary leakage, sometimes resulting in not making it to the bathroom in time. In the last 1.5 years, the results of four urinalyses have consistently shown the presence of white blood cells and hematuria. My menstrual cycles have been incredibly irregular; at times, they've been absent for six months, and when they do occur, the blood is dark rather than the typical bright red. I have been using a NuvaRing contraceptive for the past year, and my last Pap smear was conducted 3-4 years ago. Approximately a year ago, I felt like I had contracted the flu, and since then, flu-like symptoms, including nausea, vomiting, diarrhea, fevers, severe fatigue, and joint pain, have recurred monthly. Half of the month, I feel feverish, with a temperature consistently ranging from 99 to 101 degrees Fahrenheit, while on days I feel more normal, my temperature is between 96 and 98 degrees. I’ve confirmed that my thermometer is reliable, as I’ll check it against my husband's readings. Excessive sweating, both day and night, has become commonplace for me. Additionally, about four months ago, I discovered a hard lump forming in the lower left quadrant of my abdomen, and my healthcare providers are currently investigating that. Extreme stiffness and pain in my joints have also been problematic; my hips, knees, elbows, and fingers often feel locked, requiring manual assistance to straighten them gradually. A recent CT scan of my abdomen and pelvis indicated constipation and atelectasis in the lower lobes of my lungs. An X-ray revealed new-onset scoliosis, which had not been previously noted since my herniated disc at 19. Upcoming procedures include a colonoscopy and another Pap smear. My lab tests show nothing alarming, except for borderline anemia and slightly elevated ALT levels at 47, along with borderline high calcium. Regarding my bowel movements, I often experience erratic patterns, alternating between constipation and diarrhea, and have even faced incontinence, with bright red blood occurring almost every time. Interestingly, I recently managed a month without any blood in my stool, although mucus has been present on occasion. Visibly, my nails have developed a distinctive half-purple, half-white appearance. Additional skin complications include small lesions on my knuckles that take months to heal and leave scarring. I feel completely drained and frustrated; it seems like my doctors are simply passing me around, and I'm getting the impression that they view my issues as psychosomatic. While I recognize stress can impact health, my life hasn’t become more stressful than it usually is, and I want to ensure nothing is overlooked. I've also experienced a pervasive sense of mortality, as though I'm deteriorating physically. My husband has noticed changes in my mobility; getting out of bed often entails a struggle to straighten my back and walk without a limp, which feels like unlocking stiff joints. I frequently experience dizziness upon standing, a symptom that traces back to my hepatitis A episode in 2021. Given my myriad of symptoms, I am at a crossroads. I am uncertain about what I should do next. Should I keep attending these appointments, which seem to be spaced out months apart, or is it time to accept this as my new normal and learn to cope with it?

Answers (1)

9/3/2025, 2:41:23 AM

OpenHealth AI

It sounds like you're grappling with a wide array of complex symptoms and health concerns, which understandably can feel overwhelming and frustrating. It’s important to acknowledge your distress and validate your experiences as you seek clarity and improvement in your health.

Main Points

• Your symptoms could suggest multiple underlying issues that require more detailed investigation.
• Keep track of your symptoms and lab results as you continue to see specialists.
• Prioritize follow-up appointments and advocate for comprehensive evaluations to avoid feeling dismissed.

Explanation

Many of your symptoms—including persistent pain, irregular menstrual cycles, joint pain, fever, and unusual lab findings—indicate a need for thorough investigation. Conditions such as autoimmune diseases, chronic infections, or even overlapping systemic issues may be contributing to your health struggles. Given your family history and past medical issues, it's essential that these factors are closely examined.

The challenges you’ve faced with inconsistent healthcare responses can be disheartening, and it's vital that you feel heard and validated in your pursuit of answers. Your current concerns—like the lump in your abdomen, joint stiffness, and recent changes in your bodily functions—are significant and warrant timely attention.

Next Steps

1. Document Symptoms: Maintain a symptom diary detailing when symptoms occur, their severity, and any triggers you notice. This will be useful for your healthcare providers to establish patterns and correlations.

2. Follow-up on Investigations: Continue to attend your scheduled appointments, including the upcoming colonoscopy and Pap smear. These procedures are crucial for ruling out potential serious conditions.

3. Be Proactive in Appointments: Prepare for your follow-up visits by presenting your symptom diary. Clearly express your concerns and ask direct questions about your symptoms and possible diagnoses. You may want to inquire about specific testing, including autoimmune panels or other evaluations relevant to your symptoms (like testing for conditions such as Lupus or Multiple Sclerosis).

4. Consider a Specialist: If you feel your concerns are not being adequately addressed, consider seeking a second opinion or visiting a specialist in autoimmune diseases or chronic illness management. They may be more equipped to look at your symptoms cohesively.

5. Manage Stress and Symptoms: While pursuing medical answers, focus on self-care strategies to manage stress and symptoms. Consider gentle exercise, nutrition, and relaxation techniques. Simple practices like deep breathing, gentle stretching, and mindfulness can sometimes help ease discomfort and improve your overall mindset.

6. Connect with Support Groups: Engaging with professionals or groups experienced in chronic illnesses may provide emotional support and practical strategies from others who are navigating similar health challenges.

Conclusion

You deserve thorough evaluation and compassionate care tailored to your unique health situation. Staying engaged in your health journey and advocating for yourself are critical steps. Remember, it's okay to seek help not just from your healthcare providers but also from loved ones or support networks. You're not alone in this, and there are pathways to finding relief and clarity.