Editor’s note: We’ve published an updated version of this popular post, which includes more recent information and links. Read it now!
Pelvic pain is a debilitating condition that all too often is misdiagnosed and requires careful treatment. We frequently hear from women who are struggling with varying degrees of pain centered in their pelvic region and after seeing numerous physicians and therapists, they are still left with no plan of care. It’s no wonder. Generalized pelvic pain is incredibly hard for healthcare providers to diagnose. Because the pelvis is so small, the many organs and structures contained within are competing for space, we’ve heard one physician refer to the pelvis as “tight real estate.” Additionally, the pelvic organs are far less fixed than many people realize, with the organs having the ability to move around quite a bit. Something that is affecting one organ may very well affect its neighbor organ.
Luckily, for some women suffering from undiagnosed pelvic pain (healthcare providers are unable to pinpoint the cause), a rather innovative diagnosis and possibility for treatment is available. Last week, WHF’s Director of Wellness Initiatives, Anna Albrecht, and I met with Vascular Surgeon Dr. John White, who is treating a condition called Pelvic Venous Flow Disorder (PVFD), previously known as “Pelvic Congestion Syndrome”, at Advocate Lutheran General Hospital in Park Ridge, IL. This condition is associated with varicose veins that can develop and grow within the pelvis. Dr. White extended an invitation for us to view the film of a surgical procedure treating a female patient with varicose veins in her pelvis.
If you’re a faithful reader of this blog, you can imagine that Anna and my nerd alarms went on high alert! First of all, it is incredibly uncommon for a physician to be so welcoming and generous to us meek nonprofit workers. We literally jumped at the chance to see a REAL pelvis and this breakthrough treatment up close and personal.
From my personal perspective, I feel that Dr. White is the kind of physician you want; it seems he never stops learning. His online physician profile lists his philosophy of care as believing “in patient education so that patients can make informed decisions and become partners in their own health care.” This echoes Women’s Health Foundation’s belief that all women have the right to be educated on every treatment option available to her, not just the one her healthcare provider is suggesting. Dr. White initially reached out to our organization to find a suitable patient advocate partner to help raise awareness about this treatable condition.
I’m calling Pelvic Venous Flow Disorder a “new” diagnosis because there is not a lot of research on the numbers of women affected by it. Research estimates that more than 30% of women will have pelvic pain at some point in her life and it has been estimated that as many as 9 million women may have chronic pelvic pain from PVFD. Here’s my laywoman’s description of Pelvic Venous Flow Disorder: just like varicose veins in legs, the veins that help blood flow toward the heart have been compromised and a pooling of the blood will occur, which causes the bulging of the veins. In PVFD, the enlarged veins can be near or inside of the uterus, fallopian tubes, vulva, and vagina.
The pain that PVFD sufferers endure is severe and can have an enormous impact on quality of life. Symptoms, besides localized pelvic pain, can include varicose veins in the legs, swollen vulva, painful intercourse, painful, heavy menstrual periods, back pain, lethargy, and symptoms of depression. Dr. White told us the heartbreaking story of two recent patients “… [they] were just despondent. Both admitted that they were willing to end it all at this point because everyone keeps telling them that they’re crazy.”
Treatment can include a variety of options which range from physical therapy to surgical intervention. The surgical treatment Dr. White performs is with the aid of a robotic unit, which is less invasive than a laparoscopic procedure. Depending on the severity of the veins, he will either insert a stent inside the vein or clamp the vein to stop the pooling of blood. Watching the surgical procedure was truly fascinating, Anna and I were able to observe how mobile the uterus is, as it would easily sway when the surgeon would gently tap it. Thinking about this, we realized that of course it’s mobile, considering how it needs to easily shift as a baby develops in utero.
Dr. White occasionally sees patients with pelvic pain that has been diagnosed as endometriosis or irritable bowel syndrome. When describing his interactions with these patients (who also displayed symptoms of depression) Dr. White then shared his “philosophical approach to the pelvis” which made me geek out even more. (I’m sure Anna would agree)
“The female pelvis is responsible for the survival of the species. Every developmental change in the human body that adversely affects the pelvis is wiped out as quickly as you can do it. There’s been a couple million years of getting it right. It’s a complex mechanism, but it works.” he remarked.
“It’s the center point of the human body. I tend to believe that when people have a problem with the pelvis, they have a problem with the pelvis.” For these women (who were diagnosed with PVFD), Dr. White’s philosophy must have been a welcome change.
While all undiagnosed pelvic pain isn’t indicative of Pelvic Venous Flow Disorder; I hope that this blog can help at least one woman out there who is dealing with pelvic pain. If you have a history of varicose veins and struggle with the symptoms above talk to your healthcare provider.
Nerd Girl, Out.