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Diagnosing Pelvic Congestion Syndrome

Pelvic Congestion Syndrome (PCS) is often misdiagnosed or overlooked due to the number of conditions that also present with pelvic pain. If you’ve been suffering from chronic pelvic pain for over six months without answers, read on to see if you should discuss Pelvic Congestion Syndrome with your healthcare provider. I’m Pelvic Floor Physical Therapist Dr. Laura Meihofer and I help individuals suffering from pelvic floor dysfunction find optimal health through knowledge and movement.

WHAT IS PELVIC CONGESTION SYNDROME (PCS)?

Pelvic Congestion Syndrome (PCS) is a vascular disorder that occurs when the veins in the pelvic region, specifically those around the uterus and ovaries, enlarge, change shape and become engorged with blood. These changes in the veins do not allow for adequate drainage resulting in the blood pooling. This pooling causes increased pressure, pain and many additional issues.

WHAT ARE THE SYMPTOMS FOR PELVIC CONGESTION SYNDROME (PCS)?

Pelvic Congestion Syndrome (PCS) symptoms vary from person to person but often include one or all of the following:

  • Pain (dull, aching, sharp, or dragging) in the pelvis, abdomen, and/or low back that has lasted greater than 6 months. The pain is often worse around menses and when standing. 
  • Pain with intercourse (dyspareunia) or pain following intercourse
  • Fullness feeling in the pelvis, vagina/middle canal, perineum, and/or labia/genital folds
  • Swelling in the vaginal/middle canal, perineum, and/or labia/genital folds
  • Varicose veins in any of the following locations: the top, inner or back part of the thighs, vaginal/middle canal, labia/genital folds, mons pubis/suprapubic space, and/or perineal area 
  • Bladder issues including stress urinary incontinence, urinary frequency, urinary urgency
  • Bowel issues including constipation and/or diarrhea

 

WHO IS AT RISK FOR PELVIC CONGESTION SYNDROME (PCS)?

Pelvic Congestion Syndrome affects individuals who have a uterus and any one of these risk factors:

  • Hormone dysfunctions
  • Family history of Pelvic Congestion Syndrome (PCS)
  • Multiple pregnancies
  • Multiple birth pregnancies
  • Polycystic ovaries
  • Tipped or retroverted uterus
  • Varicose veins in the legs
  • Obesity

 

WHY IS IT SO HARD TO DIAGNOSE PELVIC CONGESTION SYNDROME (PCS)?

Pelvic Congestion Syndrome (CPS) is very difficult to diagnose because the primary complaint is pelvic pain. Pelvic pain can be caused by one or multiple of the body’s systems not functioning properly including vascular, reproductive, urinary, gastrointestinal and musculoskeletal systems. Pelvic pain can result from mental health concerns as well. Unfortunately in the United States, about 14% of vulvar owners report pelvic pain and this number can be as high as 32% worldwide.

In my experience, the proper diagnosis comes when an individual has a team of specialized providers looking at their case. Pelvic Congestion Syndrome is often diagnosed by ruling out all of the other causes of pelvic pain. This is a very time-consuming and expensive process which is why it is commonly missed or brushed off. It takes a lot of tenacity on the patient’s part to continue advocating for more testing until they get an accurate diagnosis and treatment.

 I recommend individuals keep a detailed log of their symptoms. This conveys to your healthcare team that there is a persistent and unchanged pattern regardless of their efforts. I also suggest making a one-page document for your provider outlining the dates/findings of any tests, procedures, surgeries or treatments they’ve had.

Always ask your provider for the clinical reasoning behind their recommendations. Why are we doing this test? What are you looking for? What will this help us to determine? What are the next steps after this? If a provider is unwilling to be fully transparent and provide detailed information, ask for another provider. There are many healthcare providers out there and as a patient, you deserve someone dedicated to supporting your pelvic health journey.

 

HOW DO PROVIDERS TEST FOR PELVIC CONGESTION SYNDROME (PCS)?

  • Pelvic, labial and abdominal ultrasound
  • Doppler ultrasound
  • CT scan
  • MRI
  • Diagnostic laparoscopy
  • Venography (x-ray of the pelvic veins)

 

TREATMENT OPTIONS FOR CPS

  • Pelvic Floor Physical Therapy
  • Hormone medication including gonadotropin and progesterone
  • Embolization or sclerotherapy to the ovarian and uterine veins
  • Surgery to remove affected veins, uterus and/or ovaries

There is not a one-size fits all approach to treating PCS and it often includes a combination of treatment methods to reach pelvic health. Most people will move from the most to least conservative options until they find relief. Pelvic Floor Therapy is the least invasive option and a great place to start! As a Pelvic Floor Physical Therapist, I create a personalized plan of care for each patient that includes neuromuscular reeducation, manual therapy and therapeutic activity.

I had the pleasure of discussing PCS with Buzzfeed after 19 year old, Johnelle Mercer documented her emotional reaction to learning doctors found a diagnosis after years of suffering. Johnelle was diagnosed with Pelvic Congestion Syndrome (PCS) after being dismissed by doctors for years. In addition to pelvic pain, she had lower back pain, uncontrollable bladder, bloating, pain during intercourse, heavy breakthrough bleeding and irritable bowels. Her Tik Tok went viral with over 21 million views and it’s easy to understand why. Too many individuals are brushed off by their healthcare providers. If you are suffering from an unknown condition, don’t take no for an answer. Advocate for yourself and insist your provider continue testing until you have a diagnosis and a treatment plan towards optimal health.