Good question! It is hard to say definitively since there are no hard and fast diagnostic criteria. There are no set list of symptoms or findings that make a concrete diagnosis.
In general, women who are ultimately diagnosed with this condition have dilated pelvic blood vessels seen on either an ultrasound or CT scan, and suffer from chronic pelvic discomfort that is made worse with prolonged standing and intercourse. There is no specific ‘amount’ of dilation that needs to be seen on ultrasound or CT scan and sometimes this can be missed.
It is unclear how many women have this condition since it is difficult to diagnose, but usually it affects women who:
- have been pregnant: this can cause an increase in the capacity of the veins in the pelvis making dilation more common
- are in their reproductive years: approximately 20-50 years old
Pelvic congestion syndrome (PCS) may be noted in 30% of women who have chronic pelvic pain and have otherwise, had a thorough and normal evaluation.
Why PCS occurs in some women and not other is unclear. It is thought that dilation of the blood vessels, backwards flow of the blood or poor blood vessel function can be an underlying cause. However, these changes in the blood vessels can be found in other women who do not have symptoms of pain.
Why does this not typically occur in menopause? Well, estrogen is a known blood vessel dilator and during the menopausal years estrogen levels decline significantly.
To make the diagnosis, it is important to exclude other causes of pelvic pain. Symptoms, exam findings and ultrasound or CT scan can help your doctor make the diagnosis.
Symptoms:
- pelvic pain for 6 months or more
- present during or after pregnancy
- worsens after each pregnancy
- usually a dull ache or pressure, that can be worse before your period
- worse with prolonged standing, walking, and after intercourse
- pain can be on one or both sides of the pelvis
- other dilated vessels may be present (like varicose veins in the vulva)
Exam: during your exam, your doctor may feel that you have tenderness near your ovaries or in the uterus.
Ultrasound/CT scan:
- If you have dilated vessels you do not necessarily have PCS (40% of women with dilated pelvic blood vessels do not have symptoms of PCS)
- If you do not have dilated vessels you most likely do not have PCS.
Treatment: The goal of therapy is to decrease blood flow to the dilated blood vessels.
- Nonsurgical: Progesterone pills or implants can improve pain symptoms
- Surgical:
- Sclerotherapy or embolization of the veins: blocking off blood flow of the veins
- Ligation of the veins: tying off the veins
- Hysterectomy with removal of ovaries and fallopian tubes
The right choice will vary based on a woman’s symptoms and her plans for future pregnancy. Since the diagnosis and treatment of this condition is still evolving and variable from study to study, a detailed discussion with your health care provider is essential in finding the best plan of care.
I am a Ob/Gyn practicing in Orange County, California. My area of focus since completing my training at USC has been Minimally Invasive Surgery and pelvic pain. My goals as a physician have included educating and being transparent with my patients about their diagnosis and treatment options. A team approach to pelvic pain and endometriosis has been proven to be most effective therefore, empowering my patients with accurate and evidence based information is essential to demystifying this often misunderstood condition.