I hopped on Zoom for a great chat with Professor Mark Whiteley to talk about the gold standard of pelvic congestion syndrome diagnosis. In this interview, we discuss why almost all doctors are diagnosing PCS incorrectly, which often yields an incomplete treatment. We talk about the type of sonography required to diagnose PCS, the infamous left ovarian vein, why the diameter of veins is a poor diagnostic criteria, and why gynecologists are ignorant when it comes to pelvic congestion.
I am now available for Peer Support Consults for people with pelvic congestion syndrome. Click here to contact me and schedule a Zoom call!
I didn’t go to medical school and I have no formal medical training at all. So, it’s quite surreal to me that I’m publishing some of the best pelvic congestion syndrome articles on the Internet.
Of course, I never intended to be able to hold an intelligent conversation about pelvic congestion syndrome with anyone — let alone the world’s leading researcher on venous diseases — but here we are. It’s 2021, and 2020 taught us that literally anything is possible. 😉
So, Professor Whiteley and I sat down for a long Zoom call, which I’ve recorded and shared below. We’re talking about the gold standard of diagnosis for pelvic congestion syndrome (hint: most of the world isn’t up to date).
If you need someone to talk to for support, advocacy, research, and experience with PCS, we can work together! Click here to contact me about a PCS Peer Support Consult.
About Professor Mark Whiteley
Professor Mark Whiteley is the founder of The Whiteley Clinic — the world’s leading clinic in the research and treatment of Pelvic Congestion Syndrome (PCS) and other venous disorders.
He is an internationally recognized expert in venous diseases, including PCS related to pelvic venous disorders. He is one of the authors on the recent International Consensus Document on Pelvic Congestion Syndrome from the UIP.
Mark performed the first endovenous surgery for varicose veins in the UK in March 1999 and started researching pelvic venous disorders in 2000. He set up The Whiteley Clinic as a center of excellence in venous disorders in 2002 and The College of Phlebology to share his knowledge with patients and other health care professionals in 2011.
In 2019, he set up The College of Phlebology International Registry so that doctors who join can benchmark their results against other doctors doing the same procedures, and patients can see which medical professionals are getting acceptable results from their treatments.
Mark continues to work to bring new ideas and technology to venous patients, to improve results, and get the best outcomes possible. His latest book, Pelvic Congestion Syndrome: Chronic Pelvic Pain & Pelvic Venous Disorders, is the only book about PCS available.
Proper venous disease treated properly is more cost effective than almost any other medical intervention, but it’s not sexy. And that’s the problem. There’s no one rising from the dead. It’s not emotive. But when you look at the numbers, treating venous conditions properly, the quality of life improvement you get for the rest of your life, when converted to dollars, is better than any cancer treatment.
It’s because we’re treating young and middle-age people who have decades of life ahead and we’re preventing clots, bleeds, skin damage, leg ulcers, time off work for pain, we’re preventing all of that long-term. — Prof. Whiteley
The Best Information About Pelvic Congestion Syndrome
- Pelvic Congestion Syndrome: Chronic Pelvic Pain & Pelvic Venous Disorders by Prof. Mark Whiteley
- Here’s What You Need to Know about PCS
- How to Find a Qualified Interventional Radiologist to Treat PCS (video with Dr. David Beckett)
- My Pelvic Vein Embolization at The Whiteley Clinic
- 20 Ways to Relieve PCS Pain
What is the best way to diagnose pelvic congestion syndrome?
When researching any disease or diagnostic protocol, the optimal way to approach any potential disease is to consider the best way to look at the problem.
In pelvic congestion syndrome, the valves of the pelvic veins have broken, causing blood to fall back down the veins with gravity. If you want to see varicose veins in the legs, there’s no point in doing a CT scan or MRI, where the patient lies down, because you can’t see the blood falling back down the veins.
The principle is the very same for varicose veins in the pelvis.
The venous duplex ultrasound is the gold standard for diagnosing pelvic congestion syndrome as well as leg varicose veins.
At the Whiteley clinic, researchers Judy Holdstock and Sharmayne Harrison developed the ultrasound technique to clearly see the blood refluxing in the pelvic veins.
A transvaginal pelvic ultrasound at 45 degrees using the Holdstock-Harrison protocol combined with the transabdominal ultrasound using the Holdstock-White protocol to check for Nutcracker and May-Thurner syndromes is the gold standard for diagnosing pelvic congestion syndrome.
Why are traditional sonograms, CT scans, MRIs, & venograms NOT the gold standard for PCS diagnosis?
Since the mid 90s, no one argues that venous duplex ultrasound with the patient lying at an angle or standing up is the best way to diagnose varicose veins on the legs. But, because the veins in question in PCS are deep inside the pelvis, doctors revert to their training: use CT scans and MRIs for internal diagnostics.
During a CT scan or MRI, the patient lies flat, so there is no backward flow of blood seen.
While this makes sense for discovering pathologies like tumors, it doesn’t make sense for people with congested pelvic veins.
Why is the duplex ultrasound with the Holdstock-Harrison & Holdstock-White protocols not used as the diagnostic standard around the world?
The transvaginal, transabdominal ultrasound using the Holdstock-Harrison and Holdstock-White Protocols is a very skilled test that requires years of training to learn.
There are very few sonographers in the world who can perform this diagnostic testing. Certainly, Dr. Whiteley and his team are hopeful that doctors and sonographers will want to learn how to diagnose pelvic congestion syndrome with these protocols.
Because most doctors and sonographers aren’t familiar with these diagnostic procedures, they default to “a quick second best” and what they know: CT scans, MRIs, regular sonography, and venograms.
The Whiteley Clinic has, unfortunately, had many patients come to them after being diagnosed with PCS via CT scan, MRI, and venogram and treated based upon those findings. They received incomplete treatments, therefore their pain and symptoms were not resolved.
Without the correct diagnostic tools, we cannot ever hope to use the correct treatment.
The Infamous Left Ovarian Vein
“Every doctor wants to find it’s [the PCS] your left ovarian vein because it’s a nice long one, it’s the easiest to treat, and it’s the safest to treat. They don’t want to find the others. They can earn money from treating the one vein, say they’ve done the job, and if you don’t get better, it’s your fault, not theirs,” Dr. Whiteley says in the video.
However, PCS is almost never in the left ovarian vein alone. The most common presentation of PCS (97% of cases), according to Dr. Whiteley and his team’s research, is the left ovarian along with both internal iliac veins.
If you’ve received treatment for PCS in your left ovarian vein but continue to experience symptoms, it is very likely that you were incorrectly diagnosed and incompletely treated.
My doctor says my veins are big enough to have PCS, but I still feel the symptoms. What’s going on?
When your doctor finds a “big” vein on your CT scan, it’s easy to correlate having a “big” vein with a high level of pain and symptoms.
However, a study published by Whiteley in 2014 showed that the correlation between reflux and vein diameter is very poor. Meaning, the size/diameter of your pelvic veins has nothing to do with your level of pain and symptoms.
Many people have “normal” size veins according to a CT scan but have severe pelvic congestion. Likewise, people have very large veins and no reflux.
I’ve heard that Nutcracker Syndrome and May-Thurner Syndrome are always involved in PCS. Is this true?
Absolutely not. And, many people have been stented unnecessarily because of this myth and faulty diagnostics.
No matter what you’ve read in online support groups, Nutcracker Syndrome and May-Thurner Syndrome are NOT commonly involved in PCS. In fact, according to Dr. Whiteley’s research, only 2% of PCS patients have true Nutcracker Syndrome (source).
In my own case, I was told that I had a 50% compression of the left renal vein — potential Nutcracker Syndrome — according to a CT scan. But remember, CT scans are performed with the patient lying down on their back — meaning gravity is pulling down on their horizontal body.
If the CT scan had been performed with me standing or sitting up, it would not have shown a compressed left renal vein — unless I had true Nutcracker Syndrome.
TRUE Nutcracker Syndrome is when the left renal vein is compressed, regardless of position. The transabdominal ultrasound with the Holdstock-White Protocol (tipping the patient backward as in the photo above) often shows an opening of the left renal vein, which is not true Nutcracker.
It is much more difficult to stent a left renal vein than it is to embolize pelvic veins. A stent needs life-long care and attention, so we need doctors to get caught up on diagnostic procedures like the Holdstock-White Protocol so that people aren’t being unnecessarily stented because of a faulty diagnosis.
Why is The Whiteley Clinic the only place researching, developing diagnostic protocols, and properly treating PCS?
Simply put: money.
It’s not commercially profitable to train and learn the Holdstock-Harrison and Holdstock-White Protocols.
It will take an experienced sonographer at least an hour to properly perform this type of ultrasound — meaning only 6 or 7 ultrasounds are being done per day. Contrast this with a typical pelvic ultrasound, which takes 20-30 minutes or with a CT scan which may take as little as 10 minutes.
It takes time and skill to research and develop these protocols. It takes time for a sonographer to perfect her skills. For doctors who do their own sonograpy, they don’t want to take the time to learn how to do sonograms differently — especially when they can make more money by putting us in an MRI or CT machine.
Properly diagnosing and treating PCS doesn’t make commercial sense (or cents).
The Whiteley Clinic is set up to be the best at what they do. They’re more concerned with better diagnoses and better treatments than with the bottom dollar.
Why doesn’t my gynecologist know anything about PCS? Why does my gyno say it doesn’t exist?
Pelvic congestion syndrome is a venous condition — not something for which gynecologists receive any training. Simply put, they’re not interested in vein problems.
Gynos love finding pelvic pathologies like tumors, endometriosis, fibroids, and cysts. They are trained in the surgery of the female pelvic organs — and they make a lot of money on these surgeries.
What they can’t or don’t need to treat surgically still comes back to the pelvic organs and hormones, not veins. Gynos know how to prescribe birth control pills and other hormonal therapies. They may even prescribe pain medication for mysterious pelvic pain.
Of all the research done on PCS, NO gynecologists have ever been involved! All PCS research is done by venous surgeons and phlebologists.
It is upsetting that gynecologists don’t know more about PCS, when 13%-43% of women with pelvic pain have PCS and almost none of them are told that PCS is even a possibility.
Any doctor who says pelvic congestion syndrome doesn’t exist is about 20 years behind. And, you should find a new doctor.
At this point, it is really up to patients to educate and advocate for themselves because we cannot rely on our doctors to stay up to date and informed on this common cause of pelvic pain.
Have you been diagnosed with pelvic congestion syndrome? Did you receive this type of sonography to properly diagnose PCS?
Disclaimer: All material on this website is provided for your information only and may not be construed as medical advice or instruction. You should consult your medical doctor or alternative practitioner when making any health-related decisions or in any matter related to your well-being. I am just a research-loving momma, not a medical professional. The information and opinions presented here are believed to be accurate. You are responsible for your health choices.