OpenHealth Q&A

Seeking Insight on Unexplained Heavy Bleeding Issues

Hello, everyone! I'm a 28-year-old woman dealing with a perplexing health issue characterized by abnormal uterine bleeding and episodes of significant vaginal hemorrhage. To share my journey, I find it helpful to present the details in a chronological manner, so here goes. My battle with menstrual irregularities began when I was just 12 years old. At that time, my periods were exceptionally heavy and frequent, forcing me to rely on the largest pads and multiple towels just to cope, yet I still often experienced leaks. Eventually, I was prescribed birth control, which managed to regulate my cycles until I turned 16. For approximately five years, everything seemed stable, but at 21, I encountered a shocking change: I started my period and it lasted for eight months without a break. Following that, my menstruation became erratic—sometimes stopping for just weeks, and at other points, only halting for mere hours. In the three years that followed, I visited an array of specialists, including gynecologists, endocrinologists, and fertility experts, suspecting I had PCOS due to elevated testosterone levels found in my lab tests. However, a specialist ultimately ruled out PCOS, and during this time, I underwent various tests for conditions like cancer, STDs, fibroids, and more, with all results returning normal. By age 24, the search for answers led me to numerous clinics across the state. A new gynecologist discovered a polyp and noted an unusually thick endometrial lining. This finding initially thrilled us, as we believed we had pinpointed the issue. In November 2021, I underwent a hysteroscopic D&C with polypectomy, where tissue was scraped from the endometrium and the polyp removed. The procedure went well, with just minor spotting afterward. My doctor assured me it was possible to be free of periods for a while post-surgery, and when they returned, they might be heavier due to the hiatus. A few months later, I started my cycle again in February 2022, and while it was somewhat intense, I thought I could handle it. However, as weeks passed into March, the bleeding escalated alarmingly, and I was passing clots the size of large lemons or small grapefruits, saturating overnight pads every 20 minutes. I was unaware that such clot sizes were concerning, as I had been told that only a quarter-sized clot was acceptable. By late March 2022, the situation became dire; my bleeding was uncontrollable. Alongside the bleeding, I developed severe symptoms like heart palpitations, extreme fatigue, dizziness, and chest pains. My spouse insisted I seek emergency care, and when I arrived at the hospital, my hemoglobin was shockingly low at 6.3—far below the normal range of 12-14, putting me at risk of serious complications. For far too long, I had dismissed my symptoms due to the dismissive attitudes of several healthcare professionals who casually attributed my condition to "normal" menstrual fluctuations or anxiety. The emergency physician confirmed the gravity of my condition, expressing that had I delayed seeking treatment, I could have faced life-threatening consequences. I felt a whirlwind of emotions—anger, fear, and relief all at once. I was admitted, received a blood transfusion, and was prescribed medications to staunch the bleeding, allowing me to return home with a tapering plan for the medicines. Despite overcoming the immediate crisis, I struggled with anemia and its impact on my daily life. Yet, I felt optimistic with frequent follow-ups with various specialists who seemed determined to get to the root of my problem. Unfortunately, it's now 2025, and despite extensive treatment, my doctors remain puzzled by my enduring issues. My cycles are still irregular post-2022 hemorrhage, and while the recent episodes have not been excessively long, I have relied heavily on medication. Last summer, I noticed that my usual 10-day Provera prescription (10mg daily) to temper my bleeding proved ineffective after only three days. It became necessary to repeat the course, and frustration mounted as the same issue resurfaced this summer. After switching to a different medication (norethindrone), I initially saw improvement but soon faced renewed moderate bleeding, which has persisted for two months without signs of cessation. At this point, my doctors are suggesting surgery without clarity on the underlying cause. To clarify, I do not take consistent birth control due to prior negative experiences, and I only use medications as needed for severe bleeding episodes. I have never been pregnant and have a family history of endometriosis, although healthcare providers have suggested that my symptoms do not align with that condition. My medical history includes consultations with rheumatologists, endocrinologists, hematologists, and multiple gynecologists, and I've undergone extensive testing for thyroid function, hormone levels, and bleeding disorders. Imaging exams, including pelvic ultrasounds, CT scans, and an MRI without contrast, indicated some minor findings, but the consensus remains that everything appears "normal." As it stands, my only diagnosis is Abnormal Uterine Bleeding. I also cope with gastrointestinal issues that have been tentatively linked to IBS. I maintain a clean lifestyle, avoiding alcohol, smoking, and recreational drugs. The only other medication I use is Claritin as needed, and I've recently been diagnosed with POTS. I realize this is a significant amount of information, so I truly appreciate your time and any insights or recommendations you might have! Thank you for your support!

Answers (1)

8/26/2025, 4:14:43 PM

OpenHealth AI

Thank you for sharing your detailed healthcare journey. It sounds incredibly challenging, and I admire your resilience in seeking solutions. Given your history of abnormal uterine bleeding (AUB), coupled with episodes of severe bleeding, it’s understandable to feel frustrated and concerned about your health outcomes. Here’s a structured overview of your situation and actionable steps you can take:

Main Points:

1. Continued Heavy Bleeding: Your history of intense menstrual bleeding, leading to anemia and requiring emergency care, suggests persistence of underlying issues.
2. Potential Causes: Despite normal test results and exclusion of conditions like PCOS, the symptoms and bleeding episodes can point towards conditions like endometriosis, adenomyosis, or uterine abnormalities which may not always appear in tests.
3. Medication Management: You have tried various medications with limited success, indicating a need for a tailored approach.

Explanation:

Abnormal uterine bleeding can result from various factors. It seems you have already excluded many common causes. Conditions like endometriosis or fibroids can cause significant bleeding but may not always be detected through imaging or tests like biopsies. Hormonal imbalances or structural issues within the uterus could also be contributing to your symptoms.

Given your persistent and severe symptoms, including fatigue and palpitations—which suggest the significant impact of blood loss—it's critical to address both the bleeding and its underlying cause effectively.

Next Steps:

1. Symptom Monitoring: Keep a detailed diary of your bleeding patterns, symptoms, and any triggers you notice (dietary changes, stress levels, etc.). This record can help your healthcare providers identify possible patterns or exacerbating factors.

2. Revisit Surgical Options: Since previous medications have shown limited effectiveness, discuss with your healthcare team the possibility of surgery that focuses specifically on diagnosing conditions (like laparoscopy for endometriosis) or more invasive treatments to manage the excessive bleeding (such as an endometrial ablation).

3. Explore Hormonal Therapies: Although past birth control experiences were negative, consider discussing other hormonal therapies that may suit your needs better. Options may include long-acting reversible contraceptives (LARCs) or different progestin formulations that might reduce bleeding without the side effects you previously experienced.

4. Consult a Specialist: If you haven’t already, consider seeking out a specialist in reproductive endocrinology who may have more insight into complex cases like yours. A multidisciplinary approach could provide new perspectives.

5. Nutrition and Supplements: Focus on increasing your iron intake through diet (rich sources include leafy greens, beans, and meats) and consider discussing iron supplementation with your doctor, especially since you've experienced significant anemia.

6. Support and Counseling: Connecting with others who face similar challenges (support groups) can be helpful for emotional well-being. Consider speaking with a mental health professional if the emotional toll becomes overwhelming.

By continuing to advocate for yourself and refining your management approach alongside your medical team, you may find a path that brings you relief and improves your quality of life. I'm here if you have further questions or need additional information.