This Women’s Health Issue Is Debilitating, and You’ve Likely Never Heard of It
Pelvic Congestion Syndrome: An Underdiagnosed and Misunderstood Vein Disease
Notice: The information shared and opinions expressed on this website are personal. Review all resources and work in partnership with your Doctor on a diagnosis and treatment plan.
Looking back, it’s easy now to connect the dots on the symptoms I was experiencing. So why didn’t a Doctor connect the dots then?
Before we look back, a story…
So there I was, curled up in the fetal position of the dirty pharmacy floor at a Walgreens in Chicago. The one on Diversey and Halsted that shares a parking lot with a Burger King. The “L” train roars above just a few blocks over on Diversey and Sheffield. I can still remember the look of the floor tiles as I rocked back and forth. I looked nuts. Hunched over, crying. They thought I was nuts. I felt nuts. All I wanted was to feel better.
I spent nearly five years in pain that would peak then pit-out on me, making me think I was in-fact causing the pain or it actually wasn’t real, rather just a symptom of anxiety. That all changed on a summer day in June when I woke up with what I thought was a tummy bug or food poisoning, and ended up writhing in pain on a dirty pharmacy floor.
The pain was similar to a kidney stone in that it was coming in waves like when in labor, but still felt manageable. As the day wore on, there were concerns of it being appendicitis or something more urgent. I hobbled down to an urgent care where they ruled out major issues but gave me prescriptions to relieve me of my symptoms and told me to head to the ER if it didn’t get better.
That night, after I had filled my prescription at Walgreens, taken my medicine and peeled myself off the pharmacy floor, a major summer storm rushed through downtown Chicago causing catastrophic water damage to our apartment. Rain flooded our top floor balcony and came crashing through every ceiling, light fixture, closet and wall. Now I had mysterious stomach pains and a literal waterfall of rainwater crashing through our home. It drenched rugs, clothing, toys and furniture. This day is ingrained in my memory as such a horrible day, but I’m grateful for it as it was the beginning of the end of my pain.
We moved out of our apartment within 24 hours of the flooding and a few weeks later after continued, constant, persistent pain - I went to the emergency room at St. Elizabeth outside of Cincinnati, Ohio. I had tried to get in to see a gastro specialist or gynecologist but all were booked for months out. I was boarding an international flight in a few days to start a new job while abroad with two kids under five - I needed answers.
At St. Elizabeth they were empathetic as I explained my symptoms and ran the whole checklist of tests on me. Bloodwork, ultrasound, intravaginal ultrasound and CT scan. To my frustration, everything was showing “normal”….except for the CT scan. It showed “slight inflammation” in an area that led the medical professional to say life-changing words: “I think it could be pelvic congestion syndrome”.
Pelvic Congestion Syndrome? Pelvic Congestion Syndrome? I had never heard of such a thing. And, pelvic…that didn’t seem to explain the location of my pain at the time which was next to my bellybutton. I was relieved to have a diagnosis but walked out with more questions than answers.
Immediately, I set out to find information online. I found limited, confusing and contradictory information in my quest for answers. This confusion and contradiction of information carried over into real-life conversations when I had an appointment a few days after my ER visit with a gynecologist I was referred to from St. Elizabeth’s. She spoke to me with language and tone that made me feel like she herself had just done a quick google search prior to walking into my room. Her recommendation was to start me on birth control pills and monitor after a few more months. She also shared my options could also be to “have a procedure done that could impact my chances of being pregnant again” (since debunked), or having a hysterectomy. I left the office in tears, boarded my flight a few days later and continued to experience pain the entire summer while living and working abroad. During one weekend in particular, I was spending the weekend in Trouville-sur-Mer in France. I was in such pain I looked and felt six months pregnant. I wore billowy dresses to hide the roundness of my stomach and grimaced as we walked around, sat at the beach or dined out.
I returned home in August of 2022, completed a cross-country move and settled into a new house, new routine, kids into schools, kids out of school with illnesses, and life moved on. Except I was still in pain, couldn’t exercise without my body retaliating against me with days of pain and fatigue and couldn’t see a way off this hamster wheel. My depression and anxiety due to the physical pain was a cloud over my life. Enough was enough. There’s no way that this is how I was meant to feel for the rest of my life. I wouldn’t accept that reality.
Being on the east coast I knew I was fortunate to have access to some of the best hospitals in the country not far from me. My initial outreach had been to The Whitely Clinic in the UK, but it seemed like a lot of logistics and paying entirely out of pocket so I pivoted my search back to the US to find a similar specialist. My search landed me on the Johns Hopkins Vascular & Interventional Radiology website.
I called and spoke to an extremely helpful and kind woman on the phone who explained that I would need to first send my information and history before scheduling a consultation. This information included:
Demographic information –includes: name, DOB, address, phone number, insurance information (you can take pix of your insurance cards).
Referring (or diagnosing) physician’s recent appointment note and contact information RE: pelvic congestion syndrome.
Reports of any imaging, reports of any prior treatments (reports of MRI, Ultrasounds; any prior interventions if applicable).
Recent progress/medical notes from your PCP.
Any recent labwork.
While I was able to quickly organize my health files and test results, my imaging disc sat on our bedroom dresser for longer than I care to admit due to needing to get it sent via FedEx. Once it was shipped I was able to call to inquire about my history and get an appointment scheduled for November, 2022 - roughly 5 months after my diagnosis.
My Consultation
My appointment was in downtown Baltimore, Maryland which required me taking a half-day of work for the drive and appointment itself, as well as extra childcare since my husband was out of town for business that day. The appointment itself was efficient and broken down into a few parts:
Check-in via Kiosk
Confirm insurance with a receptionist
Meet with someone prior to the Doctor (like a PA) to get the main history and backstory of why I was there
That PA debriefs with Doctor
Doctor meets with me
To have sat across from Doctors for years and constantly seen this look of disinterest across their face as I explain my symptoms, I was bracing myself for more of the same. Why should this be any different?
I was so relieved when the Doctor started drawing for me a picture of what was happening in my body, and then said the words, “I’m confident this is what you have - and it’s a disease - and there’s nothing you could have done to prevent it”. I couldn’t believe it. Belief! She believed me, had a name for it, and better more - a real treatment option.
The Treatment
The procedure was scheduled for a Monday which required me to take a full day off of work, arrange for my husband to take off work and drive me as I would be under twilight anesthesia, and arrange for my parents to come and stay with us so the kids could be taken care of for school as we left around 6:00 AM.
We arrived in downtown Baltimore, checked in quickly and I was brought back into the prep area for bloodwork and vitals while I waited for my 10:00 AM timeslot. I met with the Doctor and we talked through the procedure itself and then it was just a waiting game until I was rolled up to the operating room.
I was prepped and draped on my right-side as they were going to enter my veins through the right internal jugular vein. I was given local anesthesia and we were on our way! I was feeling loopy but aware of what was going on around me as I had to work with the surgeons to brace or push-down like you would during labor so they could see how the dye was moving through my veins to confirm the pelvic congestion. The following notes are from my MyChart so you can know exactly what was done:
Local anesthesia was administered. The vessel was sonographically evaluated and determined to be patent. Real time ultrasound was used to visualize needle entry into the vessel and a permanent image was stored. A 9 French Cook sheath was placed. Vein accessed: Right internal jugular vain. Access technique: Micropuncture set with 21 gauge needle.
Procedure was performed with a combination of a 0.035 Bentson guidewire, 0.035 Glidewire, a 6 French MPC Envoy catheter, 8 French MPA catheter, and a 5 French JB 1 catheter. A microcatheter was utilized to advance 0.018 Concerto coils.
Venography: Indication for venography: Evaluation for venous reflux and dilated gonadal/uterine veins; roadmapping for procedure. Vein catherterized: Left renal vein. Findings: Reflux into multiple left gonadal veins.
Venography: Indication for venography: Evaluation for venous reflux and dilated gonatal/uterine veins; roadmapping for procedure. Vein catherterized: Medial left gonadal vein. Findings: Multiple dilated and tortuous parauterine veins, with associated stasis of contrast flow. Extensive reflux into multiple additional left gonadal veins. Persistent distal flow after STS and Amplatzer plug placement.
This goes on a bit as they’re looking for all of the places where I could have congestion. They also check my right side and find no congestion of the right gonadal vein, which is very typical with pelvic congestion syndrome as it mainly impacts only the left side. After they confirmed I had pelvic congestion, they went to work and I closed my eyes as relief washed over me. It was real. It was there the whole time. My pain was real. I was right. Next came the embolization itself.
Embolization: Embolic agent: 10 cc STS foam (1:1:1 dilution of 3% STS, air and contrast); 2 x EMBO AMPLATZER VASCULAR PLUG 16MM; 1X10MM X 30CM COIL CONCERTO; 2 X COIL EMBOLIZATION NESTER 14CM 10MM; 3X 12 MM X 30CM COIL CONCERTO. Catheter position for embolization; left gonadal vein. Post embolization findings: successful complete embolization of the left gonadal vein. Right gonadal vein embolization not performed.
The procedure itself started at 10:53 am and I was being cleaned up and prepared for a short recovery by 12:40 pm. During the procedure itself there was only one time when I was very uncomfortable and did start to cry from the pain. We think it was during a particular part when they had flooded my veins with the dye where I was particularly congested which caused the pain where I was quickly relieved with a hit of sedation to help manage the pain symptoms.
While waiting in the recovery room I had the most incredible nurse, a Charge Nurse, Allie. There was a bubbly energy amongst the staff and I was so happy to have the procedure behind me. The Doctor did come down to my recovery bed and pulled up the images from the procedure to show me how badly my veins were congested and how the coils looked after the embolization. In the Doctor’s words, “we did a lot - it was a mess in there”. Here is an example of what this looks like (not my exact imaging):
The Doctor started discussing with me that I had a choice to move forward with scheduling a diagnostic venography to confirm I had pelvic congestion syndrome. During that same procedure, they would then do the treatment itself - a pelvic embolization. My concerns were mainly:
Would this impact my ability to have more kids?
What is the recovery time?
What is the financial cost?
As it was communicated to me by my Doctor, there is no evidence today that shows an increased risk for infertility after pelvic embolization. Recovery time was expected to be within a few days, but the cost did depend on my insurance as many insurance companies still consider it an “elective disease”. Armed with this information, I scheduled my appointment for December 5, 2022 with a mood that could only be described as buoyant. For the first time in years, I had hope.
The Procedure
The Recovery
Once home, I made myself something to eat since I had fasted since the night before. I had some pain in my left side, some discomfort on my neck where my bandage was, but had been told I should start to feel better either immediately or anytime within the next 6 months as my body starts to re-route my blood past the now-defunct veins. As luck would have it, the very next day I started my period which was not great considering my body was already in inflammation-mode from the procedure. For several nights I was bloated and uncomfortable. It did not feel great. I was exhausted. This was not as “bounce back” as I had thought it would be. One night I laid in bed, trying to figure out which side I should sleep on (left side was where the coil had been placed, right side was where my bandage was) and I thought to myself “this was a mistake; it’s not working”. I fell asleep, began another day and waited. And then, the next evening it felt like a switch turned on. It was around dinnertime and I was in the kitchen, and it just happened - I had energy. I wasn’t in pain. Most evenings I was so exhausted, back was aching, and I couldn’t wait to get the kids down so I could succumb to the day’s exhaustion over a glass (or two) of wine and forget the pain. I was literally bouncing around the house!
While I had a few days of joy, I did have an unexpected complication about 2.5 weeks after the procedure. While the area on my neck where they had entered my jugular vein had initially healed, somehow I started to internally bleed and developed a painful, hard swelling that was concerning. The team at Johns Hopkins were responsive and reactive, with on-call Doctors responding to me within minutes of my reaching out. They scheduled me to come in same-day for an ultrasound and confirmed I developed a hematoma but provided pressure and advised me to take Tylenol and ice it with pressure over the next several days. It continued to be a nuisance for another week, extending my recovery into Christmas (three weeks post-procedure) but heading in the new year everything seemed to be on track.
What’s Next?
So what’s next? As shared in the “My Treatment” section, I will now undergo procedures for varicose veins in my legs that have been causing me pain for years and were finally discovered as they related to my varicose veins in my pelvic region. Looking back, the very first symptoms I had of chronic fatigue and pain in my legs after the birth of my first son tie back to this disease. It was never offered as a possible explanation to me at the time. Looking back, so much time was wasted.
Now, I have started working out again and will monitor my progress and update here. On a scale of 1-10, my pain used to be off the charts, and now it’s a 1. It’s only been one month so I am hoping to see continued improvement to where I no longer feel any symptoms or pain. I hope this has been a helpful resource for you if you are in pain, feeling alone and helpless. I wish for you relief of pain and for you to reclaim your life.