An underdiagnosed pelvic pain condition: pelvic congestion syndrome
People with chronic pelvic pain (or menstrual pain) often have many different underlying conditions. [1] We often discuss common gynecological conditions like endometriosis (endo) and adenomyosis (adeno) as main contributors to pelvic and menstrual pain, but we want to shed light on a different condition: pelvic congestion syndrome (PCS).
Some estimate that PCS may be found in up to one third of women with pelvic pain; however, PCS does not get talked about as much as endo or adeno. [2] Not all gynecologists are knowledgeable about PCS and might miss it during diagnosis, so it's important to bring awareness to this common condition.
Signs and symptoms of pelvic congestion syndrome
PCS occurs when the veins within your pelvis are dilated and varicose. [3] The ovarian and pelvic veins take blood away from the uterus and back to the heart.
Varicose veins are veins that have become enlarged and twisted, usually due to damaged venous valves (valves that sit within your veins) and swelling of the vein. Eventually, varicose veins can lead to inflammation, which can lead to pain, aching, and ulcers. [4]
In those with PCS, ovarian and pelvic veins are damaged, which causes them to dilate. This dilation causes blood to pool within the pelvis because it can not return to the heart properly (this is called "reflux"). The pooling of blood and stretching of ovarian veins may activate pain sensors in the pelvis, leading to achy or dull pain.
Additionally, the pooling of blood can lead to further distension of the veins, which creates a vicious cycle where the condition may worsen over time.
Pain from PCS is often worsened by prolonged sitting, having sexual intercourse, menstruation, and pregnancy. People with PCS often have other symptoms like vulvar swelling, feeling of leg fullness, among other symptoms. [4]
Why does PCS occur?
Researchers are still determining PCS's exact underlying causes. There is a correlation between the number of pregnancies one has and the chances one develops PCS.
During pregnancy, your pelvic veins expand by up to 60% because of hormone fluctuations associated with pregnancy (and because there's a baby growing right there!) [5] Importantly, estrogen can cause veins to dilate, and many women with chronic pelvic pain have high levels of estrogen.
Additionally, some women are simply more susceptible to PCS because of their anatomy. Occasionally, veins can lack valves, or veins may connect in a way that can lead to higher pressures. People with PCS may also have vulvar varicosities or leg varicosities that actually arise from their pelvis.
How is PCS diagnosed?
It can be very difficult to get a PCS diagnosis. A vascular specialist is best prepared to identify PCS, but often women with pelvic pain find themselves seeing gastroenterologists, gynecologists, and surgeons for answers.
PCS is usually only considered when other pelvic pain diseases, like fibroids, have been ruled out, so diagnosis can take a very long time. [2]
In many cases a referral to an experienced interventional radiologist is necessary to get properly diagnosed and treated, but not all gynecologists have trusted interventional radiologists to refer patients to.
PCS can be diagnosed with imaging, such as transvaginal ultrasound and "magnetic resonance venography," where an MRI of your pelvis is done to see if veins are dilated. Fortunately, many interventional radiologists can perform these imaging procedures, so getting a referral to a radiologist is key if you think you might have PCS. Dilated veins can also be seen during a laparoscopy.
How is PCS treated?
PCS can be treated with hormonal medicines, but also can be treated through a minor procedure called "embolization" performed by an interventional radiologist. [6]
Embolization involves collapsing the dilated veins in your pelvis by injecting foam or metal coils inside the veins. Yes, you heard that correctly: a small catheter is inserted into your leg vein, navigated to the dilated veins in the pelvis, and platinum is placed inside the veins.
While it sounds pretty crazy, clinical studies have shown emoblization therapy can greatly reduce pain by 2-5 points on a 10 point scale (ie: from 7/10 to 5/10 or 2/10). [7]
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