It started with a dull ache in Mindee Thackeray's lower left abdomen. For a year, because it came and went, she didn't do anything about it.
Last September, the intermittent ache became a sharp, debilitating pain. Initially, her doctor suspected endometriosis, but a laparoscopic surgery found no trace of lesions in her pelvic region.
Further testing showed she had dilated veins around her ovaries, but hormone therapy didn't help much. By December, the pain was shooting down the top of her legs and she could "barely get out of bed because it was a bad, bad pain." Lying down brought relief, so the busy 31-year-old mother of two began spending most of her time in bed or on the couch. "It just about did me in."
She describes it as 10 times stronger than any cramps she'd ever had. And when it started down her legs, "I couldn't take it."
Thackeray's story is not uncommon. Many women suffer a type of chronic pain associated with dilated veins in their pelvis, a condition that goes by different names. Men can have similar dilation in the gonadal vein.
Dr. Colleen Harker, an interventional radiologist with Mountain Medical Vascular Clinic, calls it "pelvic congestion syndrome." Dr. Howard Sharp, an OB/GYN who directs the University of Utah's Women's Pelvic Pain Clinic, calls it "pelvic varicosity pain syndrome," a name used by the International Pelvic Pain Society.
But they agree that it's treatable and women need not suffer without help. And sooner is better than later, not only because of the pain but because pain can become entrenched and take on a life of its own.
"It's poorly understood," says Sharp of the syndrome. "By the time we see (patients), some have had it so long it's almost neuropathic pain and that's much harder to treat. Women need to get in early."
The society has four diagnostic criteria: a history of chronic pelvic pain, demonstrated enlarged veins of the uterus or ovaries, delayed blood flow through the vein and tenderness over the uterus and/or ovaries.
Veins have valves that keep blood flowing in their intended direction, back to the heart. Sometimes they malfunction and instead of opening and closing to propel the blood, blood is allowed to go backward, causing pooling, swelling and pain. The enlarged vein hurts when someone is upright, but feels better when the woman is prone and it decompresses. That's a key indication of the abnormally dilated veins, Harker says.
Lots of things can cause similar pain and it's often undiagnosed or misdiagnosed, but if being in a flat position relieves it, she says, "you can be very suspicious it can be related to large veins."
It's often mistaken for something else, the result of childbearing, or ovarian cysts, or fibroids, or neurological back pain or something happening with the bladder or colon, which are also in that area, she says.
The cause is not well understood, though most practitioners believe there's a hormonal component. Whether there's a genetic link is uncertain. Obesity seems to increase the risk.
It can affect veins of both the uterus and ovaries. An MRI with a venogram is the best way to confirm the enlarged vessels, Harker and Sharp say. Treatment approaches vary, depending on where the veins are dilated and what works for the patient. Whether a woman wants to have children in the future is a huge consideration.
Sharp says hormone therapies may provide relief.
If the ovarian veins are the only problem, Sharps recommends that patients consider ovarian vein embolization or having them occluded surgically with a laparoscope. If all else fails, a hysterectomy, with removal of none, one or both ovaries, may be called for. That used to be the sole treatment option.
An often-quoted number says that in 97 percent of cases, the condition can be improved. In two-thirds of the cases, it can be cured.
Harker says she's had great success using pelvic venogram with embolization to treat dilated ovarian veins or pelvic varices (the equivalent of varicose veins in the pelvic region), a procedure many women believe they have to go out of state to access. In fact, a number of Utah interventional radiologists do it.
That involves placing little coils in the vein, an outpatient procedure done under conscious IV sedation. A catheter is inserted through the jugular and dye is injected to look for abnormal veins. Then coils are deployed in what is a minimally invasive, nonsurgical procedure. The coils are straight but begin to coil as they are placed, filling the structures that are to be closed. One area or several may be coiled.
There are different ways to permanently close or embolize the veins. "We take out the abnormal vein that's not helping you, so there's no blood flow in it. Other veins do the job of moving blood just fine," Harker says. Closing off the vein may create some initial achiness.
Five days before Christmas, Thackeray had the coil procedure, then went home to Skull Valley for the holidays, the pain dulled considerably, manageable with ibuprofen. She's functioning again. She's again a mom to Kate, 8, and Garrett, 10, and a wife to husband, Joe, she says.And she expects it to get better still.