OpenHealth Q&A

Exploring Bilateral Ovarian Fibromatosis: Seeking Guidance for a Rare Condition

I’m a 28-year-old female, standing at 5’4” (162 cm) and weighing 222 lbs (101 kg). Currently, I'm on escitalopram and Ritalin for managing depression and ADHD. **Background Story:** My menstrual journey began early, at age eight, and has been characterized as typically heavy. In November 2024, I experienced my first missed period with no chance of pregnancy since I wasn't in a relationship—initially, I felt relieved to have a break from menstruation. By December 2024, I traveled to Germany to visit an ex. Interestingly, after we were intimate, my period resumed. However, the bleeding continued excessively for several weeks, escalating to 5, 10, and then even 15 days. When I sought help at an emergency clinic in Germany, the doctor informed me that I had "a lot more to shed". I was advised to return to Ireland for further assessment if the bleeding persisted after ten days. They identified a small cyst, about 2 cm, on my right ovary, deemed too minor for any immediate intervention. Returning to Ireland in late January 2025, I went to the Accident and Emergency (A&E) department due to ongoing bleeding. They prescribed tranexamic and mefenamic acid and sent me home. Throughout 2025, my menstrual cycles became increasingly erratic, with intervals stretching between 50 to 70 days, followed by prolonged bleeding lasting around 20 days. A particularly concerning episode occurred from October to December 2025 when I bled continuously for 50 days. Between September and November 2025, I had three separate visits to emergency departments. One of these trips was to a maternity hospital, hoping for better care. Another incident involved an ambulance due to sudden, severe pain that required stretcher transport. Although I was later told it was back pain, I disagreed; I am familiar with sciatica and this felt distinctly different. I suspect it may have been ovarian torsion, briefly twisting before returning to its original state. Each visit concluded with prescriptions for more tranexamic acid and pain relief medication. In October 2025, I underwent transvaginal and abdominal ultrasounds, which detected a significant cyst (possibly the same one) on my right ovary and a small mural nodule. This led to an MRI exam. The pelvic MRI performed in November 2025 confirmed the cyst was simple yet measured approximately 7 cm x 6 cm x 6 cm. Alarmingly, the report also noted that both ovaries exhibited an “unusual appearance.” It mentioned a “T2 signal rim” and described it as a “Black Garland sign,” indicative of bilateral ovarian fibromatosis. I had an appointment with a gynecologist just two days ago, and while they recommended further scans, I was troubled to learn that they had no prior knowledge of ovarian fibromatosis. In my quest for answers post-MRI report, I conducted my own research (not out of distrust, but rather from a sense of deficiency in the information provided), and I discovered that ovarian fibromatosis, albeit benign, is extremely uncommon. Reports suggest there have been roughly 30 cases documented in the last three decades, with most being unilateral. My case is bilateral, making it even rarer. Now, I am left pondering whether I should seek treatment abroad for this condition. Are there any specialists in my area familiar with ovarian fibromatosis? The specialist indicated that the gynecological team at my hospital would convene to discuss my case to see if any team member has relevant experience, which adds to my apprehension. I appreciate any insights or advice that could help guide my next steps!

Answers (1)

2/5/2026, 12:30:51 PM

OpenHealth AI

It's understandable to feel overwhelmed given your medical history and the complexity of your current condition. Ovarian fibromatosis is a rare diagnosis, and the uncertainty surrounding it can be distressing. Here's a structured approach to help you navigate your next steps effectively.

Key Points:

1. Understanding Ovarian Fibromatosis: This condition is characterized by fibrous tissue proliferation in the ovaries and is generally considered benign. However, given the rarity of bilateral cases, it’s vital to receive appropriate care and follow-up.

2. Symptom Management: Your ongoing heavy menstrual bleeding and pain are significant concerns that need to be addressed alongside the fibromatosis diagnosis.

3. Finding the Right Specialist: It's important to connect with a gynecologist who has experience with rare conditions, particularly ovarian fibromatosis.

Recommendations:

1. Continue Follow-Up Care:

• Since your gynecologist plans to discuss your case with their team, be sure to document all your symptoms and treatment responses. Keeping a symptom diary can provide valuable information during consultations.
• Inquire about potential referrals to a specialized center or expert in rare gynecological conditions, either locally or internationally.

2. Symptom Management:

• If you experience heavy bleeding, continue using tranexamic acid as directed. You might also want to monitor your pain and consider over-the-counter pain relief as necessary, ensuring not to exceed recommended dosages.
• If your bleeding worsens or you have severe pain, it is critical to seek immediate care.

3. Research Specialists:

• Look for establishments with a focus on complex gynecological conditions. University hospitals or specialized women's health clinics often have more access to specialists familiar with rare conditions like yours.
• Online platforms and support groups can provide insights into specialists who have treated similar cases. Websites from reputable sources may have directories or links to experts.

4. Consider a Second Opinion:

• If you feel unsatisfied with the information provided by your current team, seeking a second opinion, particularly from a gynecologist with an academic or research background in ovarian conditions, could be beneficial.

Next Steps:

• Schedule an appointment with your gynecologist to express your need for a multidisciplinary approach and possible referral to specialists.
• Compile and organize all your medical records, imaging, and treatment history to bring to your next appointment.
• Engage with online patient support groups for women with rare ovarian conditions, where shared experiences can offer both information and encouragement.

Your health is a priority, and continuing to seek information and support is important. Should you have further questions or concerns, please reach out for more guidance.