Quick, what disease affects 25% of the world’s women? Chronic pelvic pain. What’s the cause? We don’t know. But we have a treatment.
Surgeons have decided that chronic pelvic pain is caused by varicose veins in the pelvis. The disease has been termed pelvic congestion syndrome, pelvic venous congestion, or pelvic vein incompetence. Specifically, these veins tend to be around the ovaries. Ignoring that women without any pain also have these varicose veins, surgeons are currently cutting or blocking the veins with some success.
The number of studies on Pelvic Congestion Syndrome makes it almost non-existent (242 studies, bunions have 3,000 studies). We don’t have definitive studies that show that the varicose veins cause the pain, but we do have pain relief for patients who’ve had the surgery. This varies from half to 75% of women, which is a good number unless you realize that almost half of the women undergoing blockage of their veins continued to experience pain. If the venous congestion causes the pain, and you resolve the congestion, wouldn’t we expect a near-universal decrease in pain?
Pain is the symptom most likely to respond to a useless intervention. A recent acupuncture study found that almost half of the placebo group felt pain relief for chronic pelvic pain (compared to 92% of those actively treated). For placebo response, surgery is particularly likely to give a high response rate (see Huffington Post discussion). And without large-scale trials, blocking the veins in the pelvis may not be that effective.
But what if it is? Other studies show that an imbalance in estrogen may make the difference in whether or not a woman experiences pelvic pain. Surgery blocking the veins to the ovaries doesn’t just affect pain. According to one case report “(a)fter the treatment, all subjects experienced a dramatic decrease in pelvic pain, as well as an improvement in two or more preexisting symptoms, including extremity swelling, dyspareunia, external varicosities, constipation, and emotional disturbance.” All that from a little vein blocking? Yes, because blocking the flow from the ovaries would also affect the amount of estrogen they secrete into the body.
It may seem backhanded to apply a surgical solution to a hormonal imbalance, but for women with chronic pain the payoff may be worth it. Especially if they have searched for years for a diagnosis and hit upon something that sounds official. We have a diagnosis: Pelvic Congestion Syndrome. We have a solution: a low risk surgical blockage of those veins. We have outcomes: a great number of women experienced pain relief. And we have very few other options being offered. The lack of randomized trials or high quality trials means little to someone in chronic pain.
7 Replies to “Pelvic Congestion Syndrome: Is There A Cure?”
It is interesting that you say the amount of research done on PCS makes it almost non existent. I was diagnosed with this condition after years upon years of pain and misdiagnoses. This only came because my doctor is one who did not give up on me and who continued to believe me after specialists said I was imagining the pain.
I started doing research and found little to no information about it. I was shocked. Since then I have had two embolizations done a year apart and I still have challenges everyday.
I do agree that research needs to be done. We cannot continue to overlook this illness. For sure those of us with it can’t ignore. Its an everyday struggle.
Current count is 242 mentions, which puts it well below most rare genetic illnesses. I think part of the problem is that we can’t even agree on a name for the syndrome.
I’m here thinking about what you are saying in terms of genetics and hormonal imbalances. I was first diagnosed and treated for endometriosis which is estrogen dependent. I actually think I have some level of estrogen dominance. Right now my doctor and I are trying to work out the level of estrogen that offers me the least pain. If my levels drop or spike I’m in trouble, the pain is beyond words.
So maybe its all about hormones despite the veins. Maybe there really needs to be some genetic research done to fine markers for the illness. I was even contemplating if my being a premature infant could have somehow contributed to this outcome at this stage in my life.
The issue with the name probably leaves it too wide open for interpretation and involves too many areas of medicine, So there’s no real push from any faction.
There surely is a lot to think about and a lot of issues to raise.
I’d like to see a study on soy intake, with none vs. moderate vs. too much (5-6 servings). With soy acting like a low impact phytoestrogen, I’d hope to see some moderation of symptoms. But I’ve no idea. It might make things worse.
The results will probably vary from one individual to another. I can’t take estrogen not even in most women’s vitamins and I did cut out all soy form my diet. However, we recently tried evening primrose oil capsules (low impact phytoestrogen)and although it didn’t alleviate the pain itself it helped with the overall achiness and soreness and hormonal misery. I felt less hopeless if that makes any sense.This was good because a huge part of managing chronic pain is emotional and psychological.
I went into the ER for the second time this week, the first time I was told it was pelvic congestion syndrome and to take ibuprofen to help, there’s nothing else they could do. I went back today after being frozen in my living room floor unable to walk, or crawl because of the pain radiating to my thigh/legs, I could just lay on the floor and wait for help to arrive. Once I got in the doctors seem to treat my diagnosis from previous visit like a joke, insisting it must be a pinched nerve or sciatica, the second doctor said he had to look up the syndrome to read about it since he’s never seen it before. Finally after x rays, ultrasounds, blood work, urine sample, pelvic exam, they came to the conclusion that “We don’t know what exactly is causing your pelvic/leg pain, however the tests and imaging we have done indicate that it is not a serious emergency and can be treated conservatively, one of the possible diagnosis is pelvic congestion” Well when I suddenly become disabled and cant care for my 2 toddlers and newborn alone at home, I would consider it an emergency. They sent me home with instructions to take Ibuprofen and tylenol alternating every 8 hours, and to start on birth control to possibly help. No other treatment was offered.
I wonder how much we’re dealing with the interplay of estrogen and the ligamental laxity of the pelvic rim. We know that the hormonal changes of pregnancy completely release many of the body’s ligaments, literally shifting the entire pelvis. Without that relaxation childbirth would be impossible. But could an alternate state also exist, where ligaments are tightening throughout the pelvis causing chronic pain? I’ve researched relaxin for my patients with joint hypermobility syndrome. Many of them may have an imbalance of relaxin in different tissues that causes them agony. I’m wondering if this is a hormonally responsive, localized variation of the same?