Why We Can Stop Calling it "Pelvic Congestion Syndrome" Now

Pelvic Congestion Syndrome Doesn’t Exist

At least not in the way we’ve been taught over the last 75 years. I know this statement might make you feel confused, defensive, or maybe even outright angry — which is a good thing!

The field of pelvic health is undergoing a seismic shift. I’m here to challenge decades of beliefs surrounding our specialty’s understanding of “Pelvic Congestion Syndrome” and the language used to describe it.

Across healthcare, chronic pelvic pain is typically thought of as something caused by conditions involving reproductive organs, the urinary tract, or bowel. We have begun to better understand the pathophysiology and treatment of complex diagnoses like endometriosis and pudendal neuralgia. But rarely are vascular disorders of the pelvis prioritized in the differential diagnosis of chronic pelvic pain.

The general term "Pelvic Congestion Syndrome" has long been accepted as a cause of chronic pelvic pain in those seemingly “complex” patients whose source of pain is unclear upon physical examination. Oftentimes, those patients are then given ineffective, outdated treatment or discharged from care without a clear understanding of the available treatment options. This is a disastrous mistake. It reflects the lack of education the majority of healthcare providers receive regarding vascular disorders of the pelvis. This must change. Pelvic venous disorders are rarely considered a common source of chronic pelvic pain, though they are the second leading cause of chronic pelvic pain after endometriosis.¹

"Pelvic Congestion Syndrome” isn't, in fact, a standalone diagnosis. Rather, it's a symptom of something much larger; an indication of an underlying issue within the intricate network of pelvic and abdominal veins.

This blog will dismantle common misconceptions of “syndrome” terminology, and pave the way for a more precise understanding of what we now know to be pelvic venous disorders (PeVD). As we navigate the complexities of PeVD we will learn why outdated terms like "Pelvic Congestion Syndrome" actually create barriers for patients looking for quality care and treatment.

Advocating for Precision in Diagnosis and Treatment of Pelvic Venous Disorders

Imagine you’re an athlete and you just badly injured your knee. You think you may have torn your ACL, but you’re not sure. The resulting inflammation is significant. You’re in a lot of pain and your knee is now making it hard to walk and function.

You’re devastated, and in hopes of finding out what’s wrong, you head to your physical therapist for an evaluation.

You ask, “What do you think it is? Do I need surgery?”

Your physical therapist inspects your knee and responds, “I know exactly what this is. You have ‘Knee Inflammation Syndrome’.”

“Oh… Okay. Is there anything we can do about it?”

“Yes! We can do some exercises, massage, and gentle stretching. Unfortunately, this just might be how your knee is going to be moving forward. So let’s start off with some quad sets...”

This sounds ridiculous, right? Because you know there are objective ligamentous tests you can use, diagnostic imaging which can offer clarification, and surgical procedures to reconstruct a torn ACL. A return to function is absolutely possible, in conjunction with quality rehabilitation.

In this example, there is an anatomical abnormality—the torn ACL—which led to the inflammation, pain, and limited function.

You can guess where I’m going here: the same is true for pelvic venous disorders! Anatomical abnormalities in the veins of the abdomen, pelvis and legs can cause a wide spectrum of symptoms in our patients. No matter how great we are as PTs, no amount of visceral mobilization, myofascial release, or Kegels will fix anatomical venous abnormalities.

Telling your patient they have “Pelvic Congestion Syndrome” and offering non-specific treatment (because you don’t know which specific structures are affected) is no different than the above ACL illustration.

As clinicians, we must zoom out to examine the big picture. Ask ourselves — why are the veins like this? What is the source of this “congestion”?

Veins are like pipes–you have to follow their flow to determine where the problem lies. With the correct differential diagnosing, imaging, and collaboration between providers, this level of precision is possible. But we won’t get there by using outdated syndrome terminology. In fact, we end up creating barriers for patients to receive proper treatment and diagnostic imaging, as the term “Pelvic Congestion Syndrome” is a diagnostic deadend for so many healthcare providers.

Moving Away From “Pelvic Congestion Syndrome”

Venous abnormalities in the pelvis cannot be neatly pigeonholed into “syndromes” because they are incredibly complex and overlap with one another. A person’s symptom presentation can be identical, whether they have the involvement of the renal vein (“Nutcracker Syndrome”) gonadal or internal iliac veins (“Pelvic Congestion Syndrome”), or the iliac vein (“May Thurner Syndrome”).

This may be what we think is happening based on the way we have been taught:

In reality, these “diagnoses” are not so cut and dry. The overlap of these three “syndromes” can all lead to the same place:

All three “syndromes” can cause chronic pelvic pain; all three can cause pelvic and leg varicosities. So if someone came to see you for their chronic pelvic pain, how can you be so sure they have “Pelvic Congestion Syndrome”? Spoiler alert: You can’t!

The use of outdated, misleading syndrome terminology is historically known to lead to:

Patient confusion
Provider confusion
Diagnostic errors
Suboptimal results after medical intervention (implementing the wrong intervention based on the incomplete diagnostic imaging)

Yet we continue to diagnose patients with “Pelvic Congestion Syndrome”, even though this old terminology has nothing to do with our current understanding of the pathophysiology of PeVD.

I get it. If you've only ever heard of this condition referred to as Pelvic Congestion Syndrome, it's understandable why you wouldn't question it.

If you’ve been led to believe Pelvic Congestion Syndrome is a rare diagnosis, this makes sense as well.

But we know better now.

In the last few years alone, tremendous strides have been made in the research surrounding this condition. And as health care providers it is our duty to provide the most evidence based care to our patients.

This condition is far from rare — it's actually quite prevalent, ranking as the second most common cause of chronic pelvic pain, following closely behind endometriosis.²

So what are pelvic venous disorders?

Understanding the New Classification System for Pelvic Venous Disorders

In 2021, a multidisciplinary working group sponsored by the AVLS developed the S-V-P Classification System to enhance the identification of pelvic venous disorders (PeVD),improve clinical decision making, treatment outcomes, and enhance future research/trials.

In this paper, PeVD was defined as a broad spectrum of symptoms affecting the abdomen, pelvis, and legs. It can arise from venous reflux, venous obstruction, or a combination of both. Essentially, these disorders impede the efficient return of blood from the lower extremities, pelvis, and abdomen to the heart. It is no surprise PeVD remains widely misunderstood by the global medical community and is under-diagnosed across various medical specialties. We, as pelvic PTs, are in a unique position to help this patient population.

To comprehensively assess individuals for PeVD and improve diagnosis and treatment, attention must be directed towards four specific areas of the body prone to reflux and/or obstruction: the renal veins (R), iliac veins (I), gonadal veins (G), and internal iliac veins (I), or what I like to call “RIGI.”

If you think these images look overwhelming, I’m with you. Venous systems in the pelvis and abdomen are complex! But this is not outside of our scope of practice as pelvic PTs.

While we aren’t trying to be vascular surgeons or interventional radiologists, it is within our scope to understand these diagrams reflect the four specific venous regions where obstruction (depicted in dark blue) and reflux (illustrated in light blue) can occur. The continued use of outdated "syndrome" terminology restricts our focus to a more isolated area, instead of considering this vast, intricate network.

The SVP classification system for pelvic venous disorders (PeVD) comprises three key domains: Symptoms (S), Varices (V), and Pathophysiology (P). Within the Pathophysiology domain, three subcategories are considered: Anatomic (A), Hemodynamic (H), and Etiologic (E) features of the patient's condition.

By accurately delineating diverse patient populations with PeVD, the SVP instrument facilitates enhanced clinical decision-making, the development of disease-specific outcome measures, and the identification of homogeneous patient cohorts for clinical trials. This systematic approach marks a significant advancement in the field, promising improved management and outcomes for individuals with pelvic venous disorders. You can read more about the SVP system here.

Don’t Miss Another Patient with a Pelvic Venous Disorder

Pregnancy is one of the biggest risk factors for developing PeVD. Blood vessels, such as the gonadal veins, expand 50-60% of their regular size during pregnancy to manage the increased blood flow needed to support a developing baby. In addition to the stress of accommodating higher blood volumes, the growing baby and uterus also place more stress on veins. Fluctuations in estrogen and progesterone affect the integrity of vessel walls, weakening and dilating them as an adaptive response to pregnancy.

For many people, these veins and total blood volume return to baseline levels within a few weeks after giving birth. For others, these changes in the veins persist after pregnancy and can lead to symptoms of PeVD such as:

pelvic pain
vulvar/perineal varicosities
varicose veins
pelvic floor heaviness
post-coital pain or ache
urinary urgency

These venous symptoms can worsen with each subsequent pregnancy, which is why multiparous people assigned female at birth (AFAB) are at a higher risk for PeVD. You must keep PeVD a part of your differential diagnosing if you are working with a postpartum patient population.

Other risk factors for the development of PeVD include:³

A higher number of pregnancies
Anomalies in pelvic venous anatomy
Family history of pelvic pain
Low BMI with high birth weight babies
Hormonal disorders (e.g., increased levels of estrogen, polycystic ovary syndrome, use of estrogen therapy)
Varices of the lower limbs
Phlebitis
Prolapsed uterus
Previous pelvic surgery
Prolonged standing

PeVD has long been associated with a premenopausal state and post-menopausal remission of symptoms. But recent research shows people without a history of pregnancy, as well as those who are postmenopausal, can also develop signs and symptoms of PeVD.⁴

People who have been pregnant are more likely to present with primary gonadal reflux from pregnancies. It doesn't mean they can't have obstruction at the renal or iliac veins, but the gonadal veins are taxed quite a bit with multiple pregnancies.

Nulliparous people with PeVD can present with renal or iliac vein obstruction, but can develop secondary gonadal reflux as a result.

As such, we must not limit diagnostic criteria to premenopausal or multiparous patients; if we do, we may prevent an entire subset of patients from accessing available therapeutic options.

Chronic pain is commonly referred to as an “invisible illness, as you may not visibly see a clear source of pain. People suffering from PeVD may appear “normal”or “typical” at first glance when in fact, they are dealing with significant anatomical venous abnormalities and oftentimes debilitating pain. They are often gaslit by the medical system, and passed from provider to provider.

Classic Symptoms of PeVD Can Include:

Chronic Pelvic Pain for greater than 6 months. This pain can extend to regions of the abdomen, external genitals, groin, and buttocks.

Dull, Heaviness or Ache in the Pelvis. One of the hallmark signs of PeVD is pelvic floor heaviness or ache. This “ache” is non-cyclical for many people, meaning it's always there to some extent (even at a low level) not just during a person’s menstrual cycle. However, this ache will increase in severity during a person’s menstrual cycle, as well as with prolonged standing, sitting and exercise.

Urinary Urgency. Urinary symptoms may arise from perivesical varicosities, resulting in bladder irritability, urgency, or dysuria. This symptom is frequently attributed to alternative conditions, such as pelvic organ prolapse, obscuring the underlying diagnosis of pelvic venous disorders (PeVD). It's important to note, individuals may concurrently experience both pelvic organ prolapse and PeVD, emphasizing the need for comprehensive assessment and targeted management strategies.

Post-Coital Pain. Symptoms of ache/heaviness can increase with arousal and post-intercourse, as the veins become more engorged with blood during these activities. Symptoms can last from hours to days post-intercourse.

Dysmenorrhea. Many people with PeVD will develop a significant increase in the intensity of pelvic pain during their menstrual cycle.

Extra-Pelvic Varicosities. Vulvar varicosities are present in 20-40% of PeVD cases in those assigned female at birth (AFAB). PeVD is also associated with a left varicocele in those assigned male at birth (AMAB).

Pelvic venous disorders are also known to occur in conjunction with other conditions, such as:

Postural orthostatic tachycardia syndrome (POTS)
Interstitial Cystitis (IC)
Chronic Fatigue Syndrome
Ehlers-Danlos syndrome (EDS)
Mast Cell Activation Syndrome (MCAS)
Irritable Bowel Syndrome (IBS)
Chronic migraines
Temporomandibular joint (TMJ) pain
Persistent Genital Arousal Disorder (PGAD)

You Suspect PeVD in a Current Patient, Now What?

By now you’re probably thinking of a few past or present patients whose symptoms might sound consistent with PeVD. As a healthcare provider, you need to know what to do when you suspect PeVD and when to refer out to a vascular specialist.

Diagnostic Imaging for Pelvic Venous Disorders

The wide spectrum of symptoms caused by PeVD may share overlapping features with other etiologies of Chronic Pelvic Pain (CPP). Select diagnostic imaging is available to aid in a diagnosis of PeVD and help direct medical interventions. Imaging aims to determine the venous region(s) involved, the specific issues within the veins (reflux versus obstruction versus both), and the extent to which a dysfunction exists.⁵

Transabdominal Ultrasound

Pertinent vascular information can be gathered with something as minimally invasive as a transabdominal ultrasound. This type of diagnostic imaging is more accessible, cost effective, and convenient when compared to other imaging studies. When diagnosing PeVD, it is a great place to start.

Unfortunately, most people who pursue ultrasound for chronic pelvic pain are not given a proper vascular assessment, as it is not part of a general ultrasound protocol. As such, this type of ultrasound needs to be performed by a vascular technician who has been trained in this area of expertise and can properly find the relevant venous structures and examine their venous flow.

Ultrasound is often the preferred method to evaluate venous abnormalities prior to venography, which is the gold standard for visualizing reflux or obstruction of veins.

In a venography study, diagnostic catheters are used with iodinated contrast dye to observe areas of venous compression as well as measure the degree of venous distension, reflux, and pooling. MRI and CT scans can also be used to evaluate the presence of venous reflux, obstruction points, or varices.

Which Medical Treatments Exist for Pelvic Venous Disorders?

Once a diagnosis of PeVD is confirmed, specific medical interventions are performed to resolve the anatomical venous abnormalities, often completed in stages. These interventions may include embolization, sclerotherapy, and venous stenting. Often a patient can benefit from some combination of these procedures.

The purpose of a step-wise approach to treatment is to provide the least amount of treatment needed to achieve the patient’s goals. Over-treating pelvic venous disorders is similar to simultaneously pursuing a total knee and total hip replacement for a person with knee pain.

If you’re unsure whether the knee pain was a result of a hip issue or a knee issue, you wouldn’t recommend doing both procedures at the same time. If you did, and the patient’s pain resolved, you wouldn't be able to determine the source of their original pain.

In some, venous integrity can continue to change over time. Vascular surgeons may recommend regular follow up and venous imaging to monitor any emerging issues and address them before they become too problematic for the patient.

It is incredibly important to understand there is currently no accreditation process for vascular doctors to perform these medical interventions. Which is a bit scary, right? This requires you to do the work to establish collaborative relationships with providers in your area who are well versed in these procedures, to avoid overtreatment or mistreatment of PeVD.

When establishing relationships with vascular surgeons or interventional radiologists, some of the questions you can ask include:

What % of your patient population has PeVD?
What % of your caseload requires embolization?
What % of your caseload requires stenting?
What are your patient outcomes like after these procedures?

Embolization: A Minimally Invasive Approach to Treating Pelvic Venous Disorders

Embolization is a pivotal intervention in the management of pelvic venous disorders (PeVD), offering a minimally invasive yet highly effective approach to addressing anatomical venous abnormalities. The procedure involves the insertion of a catheter into the affected veins under imaging guidance, typically fluoroscopy or ultrasound. Once the catheter reaches the target site, embolic agents, such as coils or liquid embolic agents, are introduced into the veins to occlude or block off the abnormal blood flow pathways.

The primary objective of embolization is to redirect blood flow away from the dysfunctional veins, thereby alleviating symptoms and reducing venous pressure. When venous reflux in the pelvis (e.g., gonadal or internal iliac veins) is the source of a patient’s CPP, embolization with or without sclerotherapy is the current treatment of choice.⁶

One of the key advantages of embolization lies in its targeted nature, allowing for precise delivery of embolic agents to specific areas of venous abnormality while preserving surrounding healthy tissue. This targeted approach minimizes the risk of damage to adjacent structures and facilitates optimal outcomes for patients.

Embolization is particularly well-suited for individuals with symptomatic pelvic varicosities or venous reflux, offering durable relief from chronic pelvic pain, discomfort, and associated symptoms. Moreover, the minimally invasive nature of the procedure results in shorter recovery times, reduced risk of complications, and improved patient satisfaction compared to traditional surgical interventions.

*Image obtained from* *https://irsa.com.au*

Stenting: Restoring Venous Integrity with Precision Intervention

Stenting plays a crucial role in the targeted treatment of pelvic venous disorders (PeVD), offering a specialized approach to addressing venous obstruction and restoring optimal blood flow dynamics. The procedure involves the placement of a stent—a small, flexible metal or mesh tube—within the affected veins to provide structural support and maintain patency.

During the stenting procedure, a catheter is inserted into the obstructed vein under imaging guidance, allowing for precise positioning of the stent at the site of venous narrowing or compression. Once in place, the stent expands to create a stable scaffold, effectively widening the obstructed vein and restoring adequate blood flow.

By opening up the narrowed or compressed vein, the stent alleviates venous obstruction and may relieve the associated symptoms of PeVD. Additionally, the presence of the stent helps to maintain long-term patency of the treated vein, reducing the risk of recurrent obstruction and symptom recurrence.

Stenting offers several advantages as a treatment modality for PeVD, including its minimally invasive nature, which typically involves only a small incision or access site. This results in shorter recovery times, reduced post-procedural discomfort, and faster return to normal activities compared to traditional surgical interventions.

*Image depicts one example of a stent from* *VenousNews.com*

Sclerotherapy: Targeted Treatment for Pelvic Venous Abnormalities

This minimally invasive procedure involves the injection of a sclerosing agent directly into the affected veins, causing them to collapse and ultimately disappear.

The sclerosing agent, typically a liquid or foam solution, works by irritating the lining of the abnormal veins, triggering a controlled inflammatory response. This response leads to the formation of scar tissue within the treated veins, effectively sealing them off and rerouting blood flow to healthier, functional veins. Over time, the collapsed veins fade, resulting in a significant reduction in the appearance of varicose veins and improvement in venous circulation.

Sclerotherapy targets the underlying cause of PeVD by addressing venous reflux and venous insufficiency—the primary drivers of symptoms such as pelvic pain, discomfort, and varicose veins. By eliminating the dysfunctional veins responsible for these symptoms, sclerotherapy provides lasting relief and restores optimal venous function.

Sclerotherapy is associated with minimal downtime and discomfort, making it an attractive option for individuals seeking effective treatment without the need for surgery or lengthy recovery periods. Most patients can resume their normal activities shortly after the procedure, with noticeable improvements in symptoms and cosmetic appearance over time.

Sclerotherapy stands as a highly effective and targeted treatment option for pelvic venous disorders, offering patients a minimally invasive solution to alleviate symptoms and enhance overall quality of life. With its proven efficacy and minimal side effects, sclerotherapy remains a cornerstone in the comprehensive management of PeVD.

“Pelvic Congestion Syndrome”: A Diagnosis of the Past

The treatment of CPP as a result of PeVD demands a comprehensive and collaborative approach between disciplines.

Though outdated terminology like "Pelvic Congestion Syndrome" has been debunked in recent years, its continued usage reflects health care providers’ lack of understanding of this common condition.

Within the scientific community, our evolving understanding of the pathophysiology of PeVD and its treatment is in its infancy. Currently, work is being done to develop both a validated diagnostic criteria for venous-origin pelvic pain, as well as a quality of life instrument for assessing disability and outcomes after treatment. In addition, randomized controlled trials to track patient outcomes after embolization and iliac vein stenting are also in progress.

As healthcare providers, we must acknowledge the challenges in diagnosing PeVD, particularly in patients with overlapping symptoms from other conditions. The subtle nature of pelvic venous abnormalities often leads to misdiagnosis or underdiagnosis, exacerbating patients' suffering and delaying appropriate treatment. Moreover, the lack of awareness among both patients and healthcare professionals further complicates the diagnostic process.

It isn’t enough to diagnose these patients with ‘Pelvic Congestion Syndrome” when their abdominal and pelvic symptoms don’t respond to your conservative treatment. This haphazard diagnosis, thrown around without the appropriate imaging or education about treatment options available, has the grave potential of doing much more harm than good.

It’s your duty as a healthcare professional to listen to your patients. Believe them when they describe their pain experience. And advocate for them so they can access appropriate diagnostics and treatment from high quality providers.

The ability to rule a PeVD diagnosis in or out can be life changing for a patient. If you rule in a PeVD diagnosis your patient can pursue medical intervention to resolve their pain and dysfunction. If a suspected case of PeVD is ruled out, your patient can then move on to pursue other differential diagnoses to find relief.

Moving forward, it's imperative we advocate for increased awareness, education, and research in the field of PeVD to facilitate early detection and intervention. By fostering interdisciplinary collaboration and embracing innovative diagnostic tools and treatment modalities, we can address the diagnostic challenges and improve outcomes for individuals with PeVD.

If you are a pelvic floor physical or occupational therapist interested in learning more about PeVD, check out my website for more information, two free guides, and a link to my CEU-approved course, A Comprehensive Look at Pelvic Venous Disorders.

LEARN MORE

References:

Soysal M, Soysal S, Vicdan K, et al. A randomized controlled trial of goserelin and medroxyprogesterone acetate in the treatment of pelvic congestion. Hum Reprod 2001; 16: 931–939.
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Bałabuszek K, Toborek M, Pietura R. Comprehensive overview of the venous disorder known as pelvic congestion syndrome. Ann Med. 2022 Dec;54(1):22-36. https://doi.org/10.1080/07853890.2021.2014556 PMID: 34935563; PMCID: PMC8725876.
Bartl, T., Wolf, F., & Dadak, C. (2021). Pelvic congestion syndrome as a pathology of post menopausal women: a case report with literature review. BMC Women’s Health, 21(181). https://doi.org/10.1186/s12905-021-01323-3
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