The story I hear in my clinic doesn’t change much. A woman in her 30s or 40s has lived with pelvic pain for years. A dull ache, worse by evening, worse after standing all day at work, sometimes worse after intercourse. She has seen her family doctor, a gynecologist, sometimes two. She has had ultrasounds read as normal, often a laparoscopy that found nothing. Somewhere along the way, someone suggested the pain might be stress or “all in her head.”
By the time she reaches me, she has usually been told there is nothing wrong. In fact, there has been something wrong the whole time: her veins.
Chronic pelvic pain affects up to 15 per cent of women of reproductive age, yet one potential cause, pelvic venous disorders, remains widely overlooked. These conditions can often be identified using imaging already available in Canadian hospitals and treated with minimally invasive, publicly funded procedures. Yet many women experience years of symptoms without a diagnosis. I wrote a primer for Canadian Family Physician to help close this gap. The challenge isn’t necessarily a lack of technology or treatment options. It’s recognizing these conditions in the first place.
Veins normally carry blood from the pelvis back toward the heart. But when these veins don’t function properly, blood can pool and pressure can build within the pelvic veins. These patients often present with pelvic heaviness or aching that worsens throughout the day, pain during or after intercourse, varicose veins in unexpected locations and leg swelling.
Conditions in this family used to carry separate names, pelvic congestion syndrome, May-Thurner syndrome, nutcracker syndrome, which contributed to the confusion. They are now understood as one spectrum of pelvic venous disorders, and current guidelines from the major vascular societies recommend that women with chronic pelvic pain of unknown origin be evaluated for them. That recommendation is not consistently reaching Canadian practice.
Pelvic venous disorders fall between specialties. The gynecologist’s workup, reasonably, looks for gynecologic causes. If none are found, the search often ends. The family physician has had little reason to suspect a vascular cause of pelvic pain because it appears in almost no curriculum. The vascular specialist never meets the patient, because nobody thinks to send her. The condition belongs to everyone, and therefore to no one.
The health system further exacerbates the problem. The first-line test is a Doppler ultrasound of the pelvic veins but not every imaging department routinely performs or reports it. And when a venous cause is suspected, the referral pathway is far less obvious than for a suspicious lung mass. These obstacles are not about scarce resources. The scanners and expertise exist. The procedures (embolization for faulty veins and stenting for compressed ones) are established and effective for well-selected patients.
It is important to note that not every pelvic vein abnormality needs treatment. Some degree of iliac vein compression is present in roughly a quarter to a third of people with no symptoms at all, so a finding on a scan is meaningful only in the context of the right clinical picture. The answer to underdiagnosis is not procedures for everyone. It is careful evaluation for the women whose symptom pattern fits. This way the patients with a venous cause stop spending years being told their pain has no explanation.
The parallel to endometriosis is hard to miss. Endometriosis spent decades dismissed as ordinary period pain before advocacy and education shortened (somewhat) its notorious diagnostic delay. Pelvic venous disorders sit today roughly where endometriosis sat a generation ago. Venous origin pelvic pain is common, disproportionately affecting women, and invisible mostly because nobody is looking.
To improve the quality of life for patients who have pelvic venous disorders, three changes are necessary.
First, recognition in primary care. Family physicians are the first and often only doctors these women see. A short list of pattern questions, such as: does the pain worsen through the day and with standing? is there post-coital ache? are there unusual varicose veins? That is usually enough to raise the possibility.
Second, consistent imaging. Pelvic venous assessment should be a standard, protocolized part of the workup when chronic pelvic pain has no gynecologic explanation.
Third, visible pathways. If the investigation points to a venous cause, family physicians should know which hospital to refer the patient to, just as they know where to refer a palpable breast mass or suspicious skin lesion.
For women living this story, the practical message is simpler. If your pelvic pain worsens with standing and through the day, if investigations keep coming back normal, the question to bring to your doctor is: could this be venous? It is a question that, if asked earlier, could save years.
