Interview with Jordan Martin (they/them) @jordanisjustfine
Think of pelvic congestion syndrome as varicose veins in your pelvis. Another, newer term for this condition is pelvic venous insufficiency, or PVI, which better alludes to its cause. When the ovarian veins that pump blood back to your heart weaken and fail to close properly, the leaky valves allow blood to be pulled by gravity in the wrong direction and pool in the pelvic or labial veins, which can enlarge and change shape. This leads to swelling and pressure in your pelvis and lower back area without many options for relief.
What Causes PCS
Pelvic congestion syndrome affects up to 15 percent of people with vaginas, generally between the ages of 20 and 50—although not all experience symptoms. As with other pelvic pain conditions in people with uteruses, science is still trying to understand the possible causes of pelvic congestion syndrome.
What we do know is that enlarged veins in the pelvis and hormones play a major role. If you’ve had more than one child, the likelihood of having PCS goes up. During pregnancy, your veins enlarge to increase blood flow, and this can lead to permanently enlarged blood vessels and cause pelvic pain symptoms. High levels of estrogen can also cause your veins to dilate and cause PCS—and also explains why this condition is not common during menopause, when hormone levels decrease.
Pain Areas & Symptoms of PCS
The main symptom of pelvic congestion syndrome is a general dull, aching or “dragging” pain in the pelvis and lower back that lasts at least six months. It is usually felt on the left side (although at times you may feel it on both) and usually worsens throughout the day—especially while standing, or even sitting. We know that this explanation is very vague and a dull pelvic pain may allude to a wide range of conditions. Other symptoms of PCS include:
- Worsened pain before or during periods
- Irritable bladder that sometimes leads to stress incontinence
- Pain during urination (dysuria)
- Pain during or after sex (dyspareunia)
- Enlarged veins on the buttocks, vulva, or thighs
- Irritable bowels (recurrent abdominal pain and diarrhea alternating with periods of constipation)
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DIAGNOSIS & TREATMENT OF PCS
Because the symptoms are hard to differentiate from other pelvic pain conditions, it’s incredibly difficult to diagnose pelvic congestion syndrome. In fact, a diagnosis is often missed because pelvic exams are taken while lying down, which relieves the pressure from the ovarian veins so that they no longer bulge with blood as they would if you were standing. However, there are other minimally invasive methods that can help diagnose and treat pelvic congestion syndrome.
Pelvic Venography Thought to be the most accurate method for diagnosis, a venogram injects dye into the pelvic veins to make them visible during an X-ray.
MRI A standard MRI may not show the abnormality, but one that has been adapted to specifically look at blood vessels is the best non-invasive way to diagnose pelvic congestion syndrome.
Pelvic or Transvaginal Ultrasound Ultrasounds are only reliable when done while the patient is standing upright, when the pressure makes the pelvic veins visible. It can also be helpful in narrowing down other possible conditions causing chronic pelvic pain.
To manage symptoms, you may be prescribed painkillers, or hormonal birth control. Once a diagnosis is made, and if your symptoms are disrupting your daily life (you can't lie in bed all day!) you may need an embolization—a minimally invasive outpatient procedure that will seal the enlarged vein(s) and prevent the blood from pooling in your pelvis. The procedure has a high success rate that may symptoms improve or get rid of them altogether, the veins will never return to “normal” and in some cases, other pelvic veins are also affected and may require further treatment. If you don’t plan on having children, other surgical and permanent options include a hysterectomy alongside the removal of your ovaries to completely remove the veins.
Learn More With Jordan
Jordan (they/them) of @jordanisjustfine has been taking note of their pelvic pain symptoms and advocating for themself in the doctor’s office for years—and they're still trying to understand their symptoms. No one ever said it would be easy—but acknowledging the difficulty of finding the source of discomfort can help you cope with what you can’t control.
What would you recommend to someone who is trying to find the source of their discomfort?
I would recommend compiling a detailed family history and going to multiple specialists. If you find advocating for yourself difficult, bring someone who can strongly advocate for you. Get diagnostic scans. Keep looking and noting your symptoms until you can verify what's going on.
What products or methods have you used to help alleviate your pain?
I have used heating pads, pain medications, essential oils, massage, exercise, diet regimens, and meditation for pain relief.
How does chronic pain affect your day to day life?
PCS make it uncomfortable or painful to do most activities all day. By the end of the day, I'm genuinely feeling pain throughout my pelvis and lower back. Sometimes fast movements can trigger very sharp pains, so it's always a gamble if I want to make a dramatic gesture, or have to move suddenly. The only position that makes me feel mostly comfortable is laying down, which isn't necessarily an option for the whole day.
Are there any rituals, diets, exercise, anything that may agitate or improve your symptoms?
So far, there aren't a lot of rituals that seem to help the pain issue, but I definitely use diet to control some of the unusual side effects. Specifically, I just try to make sure my diet is optimized to keep my stools regular, because PCS can cause periodic constipation/diarrhea. I just try to get my body moving whenever I can and feel good, because I know there are days where I really can't.
Do you feel that doctors are knowledgeable about PCS?
To be honest, I don't think I know enough myself. As far as I can tell, my bringing it up has never confused a doctor, but I would not be able to know otherwise if a doctor was not knowledgeable. Generally, they don't have many suggestions for my pain management besides what I've already tried, but I haven't found many other suggestions either.
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