Escalation of Chronic Pelvic Pain: Seeking Guidance
I’m a 47-year-old woman dealing with lupus and currently immunosuppressed, facing significant challenges with pre/perimenopause. Over the last two years, I’ve experienced considerable pelvic pain, but the intensity has markedly increased in the past month, leaving me bedridden for most of my days due to the discomfort. Throughout my menstrual cycle, the pain remains quite persistent, and I have recently started experiencing heavy menstrual bleeding—something that has not been typical for me—accompanied by large clots measuring around 4-5 centimeters. Additionally, I have been battling recurrent urinary tract infections, which led to a hospitalization for urosepsis. I struggle to completely empty my bladder and often feel a strong urge to urinate, and I also experience pain while doing so. In February 2024, a transvaginal ultrasound revealed an anteverted uterus along with multiple nabothian cysts, an anterior fibroid of 5.1 centimeters, and a left ovarian cyst measuring 1.7 centimeters. However, a CT scan in July 2024 showed a lobulated uterus, likely a fibroid, and a complex septated left ovarian cyst measuring 2.6 centimeters. A CA-125 test indicated elevated levels, though it was not more than three times the upper limit of normal. By October 2025, another ultrasound indicated a 5.1-centimeter anterior pedunculated fibroid and a left ovarian cyst measuring 1.4 centimeters. My OB/GYN believes the cysts are functional, even considering they were identified at different points during my menstrual cycle. She has suggested a hysterectomy or a consultation with a specialized fibroid surgeon, expressing her limitations in managing my condition. A urology specialist has indicated that the fibroid might be impacting my bladder, contributing to both the urinary issues and the pain I’m experiencing. Meanwhile, my primary care physician has also expressed concern and referred me to another gynecologist. During my appointment with this second gynecologist, I underwent a cervical motion test that caused me significant discomfort. She suggested the possibility of pelvic inflammatory disease and conducted tests for various STIs; however, I was only diagnosed with Bacterial Vaginosis. I received a 14-day course of treatment with Flagyl and doxycycline, but after ten days, I feel no relief—in fact, I’m worse off than before. The doctor advised me to continue the medications and scheduled a follow-up visit in a few weeks. My rheumatologist has mentioned that my symptoms could be consistent with endometriosis, though he is unable to provide treatment as it falls outside his area of expertise. The pain I am enduring is overwhelming—I feel like I could scream from the agony that’s relentless. Standing has become nearly impossible, and when I do manage to stand, it’s a truly excruciating experience. To compound matters, I’ve been experiencing nausea to the extent of vomiting, likely due to the pain itself. I am at a loss regarding my next steps. Should I consider going to the hospital, proceeding with scheduling a hysterectomy with my initial OB/GYN, seeking out the specialized fibroid surgeon, postponing everything for the follow-up with the second gynecologist, or attempting to find a new GYN altogether? Any guidance or advice on how to navigate this situation would be greatly appreciated.
Answers (1)
3/28/2025, 4:00:58 AM
OpenHealth AI
I'm truly sorry to hear about the overwhelming pain and complications you're experiencing. It sounds very challenging to manage multiple health issues simultaneously, especially with your lupus and ongoing pelvic pain. Let's discuss your concerns and how to prioritize your next steps for relief and better management of your condition.
Main Points:
- Your worsening pelvic pain and heavy bleeding require immediate attention.
- You have multiple health professionals involved; potential options include surgery or a different specialist for endometriosis.
- A plan should be established to address your current pain management and next steps for further evaluation.
Explanation:
Chronic pelvic pain, especially with your history of fibroids, ovarian cysts, and your complex medical background, can result from many factors, including the fibroid’s impact on your bladder, potential endometriosis, and recurrent urinary tract infections. Elevated CA-125 can be indicative of various conditions but isn't definitive alone without additional testing or symptoms guided by your full health background.
Given that you are bedridden and experiencing severe symptoms, immediate relief should be your priority. Your pain level, alongside new or worsening symptoms, may warrant urgent attention.
Next Steps:
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Immediate Pain Management: If your pain is unmanageable, consider seeking emergency care. Pain relief through medications or even potential hospitalization may be necessary to help stabilize your condition.
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Consultation for Surgical Options: If you can, schedule a consultation with the specialized fibroid surgeon as suggested by your OB/GYN. Surgical options, such as a hysterectomy, may provide relief, especially if the fibroids are causing significant pain and urinary symptoms.
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Follow-Up on Urinary and Gynecological Issues: With your history of recurrent infections, the urology specialist's insight is critical. Consider scheduling further diagnostic tests to evaluate the interplay of your fibroids with your urinary symptoms, as untreated issues here could exacerbate your pain.
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Evaluate Current Medications: Since you're not finding relief from the antibiotics prescribed, discuss this with your second gynecologist. You may need to reassess the treatment plan, especially since you have described worsening symptoms.
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Consider a New Gynecologist: If you continue to feel your concerns aren't fully addressed or if the pain persists with no improvement, seek a new gynecologist who specializes in complex cases, including endometriosis or chronic pelvic pain.
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Support for Psychological Impact: Chronic pain can take a toll on your mental and emotional health. Consider connecting with a counselor or support group specializing in chronic pain or women’s health to help navigate these challenges.
Please remember, prioritizing pain management and addressing your immediate symptoms will guide subsequent steps. You deserve relief and support in navigating these complex healthcare decisions. Reach out for help as needed, whether from healthcare professionals or support networks. Let me know if you need more specific resources or further details on these steps.
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