If you’ve been diagnosed with PCS, then you’ve likely heard horror stories and misinformation being spread online. I have collaborated with Dr. Mark Whiteley to write this post: 11 Questions to Ask Your Doctor Before Treating Pelvic Congestion Syndrome. You are your own best advocate when it comes to pelvic pain. This post is meant to educate and empower!
I am so honored to have collaborated with Professor Mark Whiteley to write this extremely informative post on how to talk to your doctor before treating Pelvic Congestion Syndrome (PCS).
My PCS diagnosis was quite accidental in January 2019. I had been having left side pain and pelvic pain and heaviness for a couple of months following a UTI. Naturally, I thought it must be a kidney stone. The ER doctors agreed with me and did a CT scan.
They determined the cause of my pain was not a kidney stone but due to an enlarged left ovarian vein, as shown on the CT scan.
After visiting 2 other specialists and calling several clinics in the United States (including the Mayo Clinic) for my PCS, I concluded that not only was treatment in the US unaffordable, the doctors weren’t competent in diagnosing or treating Pelvic Congestion Syndrome.
You can read about my symptoms and diagnosis in this post.
About Professor Mark Whiteley
Professor 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 on Amazon.
The Scope of This Post
Before we dive in, it’s important to note the scope of this post.
PCS is only one cause of pelvic pain. Endometriosis, fibroids, adenomyosis, interstitial cystitis, pelvic floor dysfunction, irritable bowel syndrome, perimenopause, ovarian cysts, pelvic inflammatory disease are other notable causes of pelvic pain.
The scope of this article is to empower you to have a healthy and productive conversation regarding PCS with your doctor. It does not claim to address other causes of pelvic pain.
Indeed, PCS can exist on its own or alongside any of the other causes of pelvic pain.
How This Post Came To Be
From the time of my diagnosis in January until now, I have been amazed at the lack of correct information about PCS.
Women (and men) are not receiving the proper diagnostic imaging or correct treatment for PCS. From ill-informed and even ignorant doctors to patients with PCS who have experienced complications or worsening symptoms due to faulty embolization, the world needs informed people who can help to set the record straight.
Fortunately, Dr. Whiteley shares this concern.
I do not believe it was a coincidence that I was diagnosed with PCS. Everything we go through is for a reason — and it’s always to raise our awareness to how we can help others for the highest good of all.
We all have a platform upon which to share our struggles, journey to healing, and ultimately, our gifts. This website is my platform.
Dr. Whiteley and I have kept up an email correspondence for months. I emailed him questions, and he replied with answers. He also helped me know which questions to ask before treating Pelvic Congestion Syndrome.
Ladies and gentlemen, how often do you find a doctor who is willing to take the time and energy to correspond with you for a period of months?? Dr. Whiteley is a true gem.
His desire is the same as mine: to get the right information out to the public so that proper diagnoses and treatment of PCS becomes the rule rather than the exception.
Therefore, this article is the product of our collective desire to provide free and accurate information to whomever needs it and to dispel the myths, misinformation, and even lies about PCS diagnosis and treatment.
Why Facebook Support Groups for PCS Might Not Serve You Well
I live by the motto “Everything is figure-outable”.
Where there is a will, there is a way.
I’ve told my husband many times during my health struggles,
I’ll never give up on myself. I’ll never stop looking for answers because I believe that when I put my intention into whatever is for my highest good, the puzzle pieces come together.
Sure, I was disappointed at not finding answers in the United States. But, I believed with enough time and research, I could figure out a way to get the correct diagnosis and treatment for my PCS.
Unfortunately, I went through a considerable amount of anxiety during this process — thanks in part to joining a couple of PCS Facebook “support” groups.
The overall tone of these groups centered around fear and pain — not hope and healing.
A quick scroll through these groups revealed women who had been in pain for years, sometimes decades. These women had been ignored, referred to psychiatrists for being hysterical, told that PCS wasn’t real, and more.
Their trials and pain are real, their voices unheard, and their pain palpable.
Yet, it is often from a place of pain that fear spreads. Understandably, we don’t want to be alone in our pain — thinking that we’re the only ones suffering as we are. We also don’t want to be alone in our fear, but want others to share it with, vent to, cry with, and lean on.
Often however, as valid as these feelings are, this only perpetuates the fear/pain cycle.
False PCS Claims & Misinformation
These Facebook groups also revealed an astonishing number several medically false claims like:
- PCS is almost always caused by “compressions” like Nutcracker Syndrome and May-Thurner Syndrome.
- CT scan and/or venogram are the tests we should demand from doctors for a proper diagnosis.
- Embolization doesn’t work or makes the patient worse because of the material of the coils. (This isn’t always false… more below!)
- Hysterectomy is the best way to “cure” PCS.
You are your own best advocate — Make INFORMED choices!
These groups made me aware of things like compressions and embolization coil material. This gave me more information to research. For that, I am thankful.
However, throughout this process, I have learned that there is no substitute for actual research. Reading published, peer-reviewed medical papers and talking to actual doctors is the surest way to make an informed choice.
What better doctors to talk to than the ones who are publishing real research with successful results?!
Regarding diagnosis and treatment of PCS, there is a shocking amount of inaccurate and fear-based information circulating on social media and online in general.
I hope to help dispel some of that mis-information. I also hope to empower you, a person suffering with PCS, to seek out the best possible treatment for yourself.
YOU are your own best advocate. You cannot advocate for yourself if you are uninformed or misinformed.
Yes, it takes time and energy to do medical research. Yes, you have to learn how to read journal articles and published studies. But, in the end, no one should ever go solely off the word of their doctor or their Facebook group when making medical decisions.
Perhaps 30 or more years ago, this was the norm. But, not now — not with a vast amount of data available at our fingertips. If you are determined to find answers, you will!
Be careful though! There is false information online, too. This information appears to be legit, since it comes from clinics or doctors’ offices. (Like this article which is insanely inaccurate in so many ways).
Although women like me and those in support groups have valid experiences to share, you still are responsible for you.
Refuting False Claims & Misinformation
Rather than starting with Facebook or the Internet, why not start with the best PCS information currently available?
I highly recommend reading the first-ever published book on PCS — Pelvic Congestion Syndrome: Chronic Pelvic Pain & Pelvic Venous Disorders. This book thoroughly explains PCS in ways anyone can understand while setting the record straight on what is and isn’t the correct scientific way to diagnose and treat it.
To quickly refute some of the false information and claims I mentioned above:
- PCS is NOT almost always caused by compressions; in fact, compression syndromes are quite rare WHEN PROPER DIAGNOSTIC IMAGING IS USED. It is easy to mis-diagnose a compression, like Nutcracker, if CT or MRI is used. But these are not the proper diagnostic imaging — more below!
- CT scans, venograms, and MRIs are not the best way to diagnose PCS — more below!
- Pelvic vein embolization, when performed by an interventional radiologist with an excellent track record and when proper coils are used, is very successful in treating pelvic congestion syndrome (source).
- PCS is a vein problem — not an organ problem. A hysterectomy does not treat the veins and will cause a host of hormonal changes which can make you feel even worse!
I am honored to have collaborated with Professor Whiteley on this post. No other resource like this exists on the Internet of which I am aware.
By educating yourself before seeking treatment and knowing what questions to ask and what answers to look for, you can set yourself up for the most successful outcome.
Professor Whiteley and I will take you through the 11 questions to ask your doctor before treating Pelvic Congestion Syndrome.
#1 — What is Pelvic Congestion Syndrome?
It may seem like a no-brainer to ask your interventional radiologist this question before proceeding with any sort of procedure — such as a venogram or pelvic vein embolization.
As a patient, it is vitally important that you have confidence in your doctors. It is equally important that you have a full understanding of your diagnosis.
When I was first told I had PCS, the doctor simply explained it like this: “Basically, you have varicose veins in your pelvis. You need to see your gynecologist.” Not super helpful, huh?
When your doctor can’t explain your condition to you in a way that makes sense, you can’t proceed with a treatment plan. Or, you end up proceeding with whatever they tell you to do because you haven’t been given the chance to make an informed decision.
Fully understanding Pelvic Congestion Syndrome will help you to make the best treatment choices for yourself.
Pelvic Congestion Syndrome (PCS) is basically a name given to the collection of symptoms and signs caused by pelvic varicose veins. There are two ovarian veins, right and left, and two internal veins, right and left. Therefore, PCS can occur because of the failure of valves in any number of these four veins.
Similar to leg varicose veins, pelvic varicose veins arise from either the ovarian veins or the internal iliac veins which have lost their valves.
Just like varicose veins in the legs, we can only tell the difference between a vein with working valves from one where the valves have failed by looking at the direction of blood flow within the vein.
So, in normal veins, blood only flows upwards towards the heart.
If the valves fail, blood flows up towards the heart on movement, but can then fall back (“reflux”) into the pelvis. This backward flow or reflux is what causes the veins to stretch in the pelvis and become varicose veins. It also causes inflammation which is one of the causes of the pelvic pain and aching in PCS.
Here is a fantastic video explaining PCS.
#2 — What is the best way to diagnose Pelvic Congestion Syndrome?
The trans-vaginal, trans-abdominal venous duplex ultrasound scan using the Holdstock Protocol has proven to be the gold standard investigation for PCS. Here is a published study to confirm this.
Why ultrasound and not CT scans, MRI, MRV, laparoscopy, venogram, or IVUS?
Because it is essential to see the blood refluxing down the vein.
Blood only refluxes because of gravity. Therefore, it is obvious to anyone who thinks about it that you will not be able to see venous reflux in these veins if the patient is examined lying flat.
As shown in the leg varicose veins in the 1990s, colour flow duplex ultrasound is the gold standard way of looking for venous reflux. Ultrasound is used to identify the vein, and then using the Doppler principle, colour Doppler is superimposed showing which way blood is flowing within the vein.
For correct and proper PCS diagnoses, The Whiteley Clinic have developed the Holdstock Protocol which has been published and presented around the world and has even won international prizes.
The difference between this type of ultrasound and other diagnostic methods?
Simply put, the technician puts gravity to work. The patient is examined while sitting up, lying down, and tilted backwards — allowing the blood flow to be accurately seen in all veins, in all positions.
A truly refluxing vein (or compression) will remain congested (or compressed) regardless of gravity or position.
#3 — Is diagnosis of PCS through CT scanning, MRI, MRV, venography, laparoscopy, or IVUS acceptable?
Unfortunately, no.
CT scanning or MRI scanning are useless, as these imaging techniques usually require the patient to lie flat on her back. Some doctors trying to force reflux in patients by getting them to hold their breath and push (the “Valsalva manoeuvre”). However, we should be using techniques to look for reflux that is occurring naturally.
In addition, venography is also useless as a diagnostic technique. Although patients can be placed in different positions, the contrast or “x-ray dye” that is injected to see the veins is much more dense than blood and does not really represent normal blood flow.
Indeed, it is often injected under pressure. False readings can be expected when venography is used for diagnosis.
If the diagnosis and treatment plan is made on MRI, MRV, CT, laparoscopy, IVUS, or venogram, expect a 50% chance of the wrong veins being treated.
Some doctors use expensive techniques such as intra-vascular ultrasound (IVUS) to look at the vein on the inside to see if is being compressed. However, just because a vein of may look compressed when you are lying down and having a catheter passed along it, does not mean to say that any apparent narrowing actually causes an obstruction or resistance to flow.
This is why Dr. Whiteley and his team at The Whiteley Clinic use Doppler ultrasound to see the flow itself.
#4 — Have you been properly checked for compressions (ie. Nutcracker Syndrome or May-Thurner Syndrome)?
Though rarely the cause of PCS, compressions should still be discussed with your doctor.
In the same way that leg varicose veins are almost always caused by venous reflux due to valve failure in the leg veins, pelvic varicose veins are almost always caused by venous reflux due to valve failure in the pelvic veins.
Although some doctors believe that PCS is caused by a compression of a vein, 20 years of experience and research in The Whiteley Clinic has shown that this is not usually the case (source).
Many doctors who start seeing patients for PCS will diagnose compression syndromes — such as May-Thurner Syndrome and Nutcracker Syndrome — because they see narrowing of veins above areas that reflux.
They logically think that the narrow area is stopping blood from getting through, dilating the vein below and causing it to reflux.
Research from The Whiteley Clinic in the UK, however, showed that this is often wrong. This research won the first prize at the American College of Phlebology meeting in November 2017.
Often, because blood is refluxing down a vein, the vein above becomes less full and shrinks down.
This was proven by performing embolisation of the refluxing vein and blocking it off. If the obstruction had been real, this would cause a severe problem. However, in all of the patients studied, removing the venous reflux made the venous blood flow the right way, and the area that appeared to be compressed then dilates up normally.
This a “pseudo-obstruction syndrome”.
Judy Holdstock and her team at The Whiteley Clinic have taken this further by showing that if there appears to be a compression, it is quite simple to tip the patient head down during the trans-vaginal venous duplex ultrasound using the Holdstock Protocol.
This reverses any venous reflux simply by using gravity. In most cases, the “compression” disappears — proving that it was actually a “pseudo-compression”.
In the few patients with real compression syndrome, the compression remains visible even when tilted backwards. These are the patients that we can then investigate with more sophisticated tests and consider stenting.
Fortunately, real compressions are really quite rare, accounting for only 1-2% of cases in our series. Many specialists perform stenting in a large number of their patients, and we suspect that many stents have been placed in pseudo-compression veins.
#5 — Are there non-surgical ways of treating Pelvic Congestion Syndrome?
It is not wrong or unreasonable to want to take a conservative approach with your PCS. After all, if there is a medication or something you can do other than surgery, that seems like the best option, right?
“Conservative treatments” in medical terms means treatments that have little to no risk. Usually, this is something you can do or perhaps a medication you can take.
Compression pants may be beneficial for managing symptoms, but as soon as the pants are removed, the symptoms return.
On the medication front, Medroxyprogesterone acetate may provide some pain relief. This medication has no effect on the veins themselves; rather, it has an effect on the neurotransmitters released due to the inflammation of the congested veins. So, it can help with symptom relief, but will not change or treat the refluxing veins.
Birth control pills and other hormonal interventions don’t treat PCS either.
Therefore, conservative treatment approaches don’t correct the underlying problem of vein incompetency. They don’t even prevent PCS from getting worse.
If left alone, the incompetence will worsen over time, as the vein dilates and blood refluxes down it.
If it is treatment you desire — not symptom management — your best option is venous ablation (embolization).
Here are 20 ways to relieve PCS pain if symptom management is what you want.
#6 — How does pelvic vein embolization work?
Veins are ablated (embolized) with long, thin coils.
As they are deployed into the vein via a catheter, they coil up and irritate the vein wall.
The vein wall goes into spasm and gets inflamed. Over 4 to 12 weeks, the inflamed vein constricts down and eventually permanently fibroses (forms scar tissue) around the coil. Then, the vein is permanently closed.
Most modern coils have little fibers poking out of the coil at right angles, maximizing the irritation to the vein wall.
The inflammation does mean that there can be variable amounts of discomfort or irritation during the first few weeks or months after embolisation. Fortunately, this is much less of a problem than recovering from major surgery which is an alternative way of doing the same thing!
Pelvic vein embolization at The Whiteley Clinic is a walk-in/walk-out procedure that is performed with the patient totally awake. A local anesthetic is used to numb the area around the jugular vein, where the catheter is inserted.
In my case, I had 13 coils placed into 3 pelvic veins. The whole procedure took about 35 minutes. It was so cool (and also a bit anxiety-inducing) to watch!
In the US, patients are often put under general anesthesia or are heavily sedated. This lengthens recovery time and increases the risk of complication.
#7 — How many pelvic vein embolizations per year do you perform?
In all practical procedures – operations or interventions – it is generally accepted that 5 or fewer per year is inadequate to keep up a practice.
Generally, 10 per year (just less than one per month) is thought to be the minimum to keep skills current.
With most interventional radiologists lacking this experience, it is not surprising that so many women say they have had embolisation and it hasn’t worked!
Ask your doctor to see audits of previous patients they have treated. Ask if you can contact previous patients to speak with them about their treatment and outcomes.
Even with HIPAA laws in the United States, a doctor may reach out to a previous patient and ask their permission to put you in contact.
Beware of any doctor who refuses to show you his or her track record or published case studies. If they have had bad or good results, they should document both in medical literature.
UPDATE: In addition to recommending The Whiteley Clinic, I am very pleases to have found a clinic in the United States which offers the most up-to-date imaging and has a high success rate of pelvic vein embolization — Interventional Vascular & Vein Center in Utah.
#8 — Will my iliac veins be treated, too?
The ovarian veins are long veins that are easier to treat. As such, when doctors start performing public vein embolisation procedures, they all like to emphasize the ovarian veins.
Yet, research from The Whiteley Clinic has shown that the internal iliac veins are involved in almost 97% of cases (source)! The commonest pattern of public vein reflux is the left ovarian vein and both internal veins.
The problem is both that doctors do not like performing embolisation in the internal iliac veins as they are very difficult to embolize safely and require a lot of experience and skill.
Secondly, MRI, CT, IVUS, venography, and laparoscopy do not show the internal iliac vein reflux and so the doctors are not aware of the problem.
If all doctors learnt to use the trans-vaginal, trans-abdominal venous duplex ultrasound using the Holdstock Protocol, they would be able to identify the internal iliac vein reflux.
Truly treating pelvic congestion syndrome means treating the internal iliac veins in addition to the easily accessed ovarian vein(s).
#9 — Of what material are the coils made that are used for pelvic vein embolizaton?
Embolization coils are made of metal and are permanent. Therefore, it is imperative to know what the coils are made of.
If they dissolved, there would be a risk that the vein would re-open. Would you want a hip replacement that dissolved?
Most coils are made out of platinum as this is hypoallergenic and does not corrode. As such, it is one of the safest metals to have in the body.
Several companies make these coils. The ones used at The Whiteley Clinic most commonly are made by a company called Cook.
Platinum is inert. It does not typically interact with the body to cause an allergic response. (This does not mean that no one will react to platinum — just that it is rare.)
On the other hand, nickel is well-known for causing contact allergies. Many women cannot wear nickel jewelry because it irritates their skin. Or, they must cover the inner part of the buttons in their jeans, as the contact gives patches of eczema. This is nickel allergy.
When the nickel is on your skin, it is easy to stop. Remove the nickel from the skin and stop the contact.
However, if you have implanted coils inside the body, the nickel is in contact with the vein wall. This can potentially cause an allergic response. Unfortunately, coils are hard – if not impossible – to remove.
Insist on knowing:
- the material from which your coils are made,
- the company that manufactures your coils
- and the batch number(s) of all coils inside of you
#10 — Will the embolization catheter be inserted through the groin or jugular vein?
A jugular (neck) approach is preferable to a groin approach for pelvic embolisation for several reasons:
1 – Anatomy.
The ovarian veins and internal iliac veins are vertical in the body, with their openings at the top. This is because, when they are working, they pump blood back to the heart (up). However, when they become incompetent (valve fail) and need treatment, coils must be put deep down within the vein. Hence, the catheter needs to be passed into the opening at the top and down the vein to the part that needs embolisation.
As the veins point upwards, it is easiest to pass the catheter from the jugular into the vein, and down it, in a straight line.
Going through the groin means you start underneath the vein, have to pass the catheter up, past the opening, and then turn it 180 degrees and back down the vein to be treated. This is much more complex and carries a higher risk of mis-placement or failure.
2 – Gravity.
We know the veins are best imaged when the patient is sitting or lying on an incline. Lying flat empties the veins so they cannot be seen or treated easily.
With a jugular approach, the patient can be lying at 45 degrees – the perfect position of treatment. If the groin is used, the patient is lying flat, making it more difficult to treat.
3 – Less risk of infection.
Although infection is rare, the risk of having an infected coil inside you permanently is a disaster. The neck is easier to keep sterile than the groin.
4 – Controlling bleeding, if needed.
It is rare to get a bleed from the puncture site – but not impossible. It is much easier to see and compress a bleed in the neck rather than the groin.
#11 — Can you explain the purpose of sclerosant foam and why it’s used in addition to coils?
Both coils and sclerotherapy are necessary to successfully treat Pelvic Congestion Syndrome. Your doctor should talk to you about both.
Here is the purpose of sclerosant foam:
When a pelvic vein is refluxing and causing pelvic congestion syndrome, there are lots of varicose veins all over the pelvic structures (uterus, ovaries, bladder, bowel, vagina, muscle etc). This network joins together to make several larger tributary veins, which then join to make the large ovarian or internal iliac veins.
Platinum coils are very good at blocking off big vein trunks and big tributary veins. They cannot, however, be put down every part of the network of varicose veins, as the patient would need hundreds of coils. Even if you could, the metal coils would irritate the structures (uterus, bladder, ovaries, bowel, etc.) that the smaller varicose veins lie on.
Therefore, foam sclerotherapy is injected into these smaller varicose veins. The foam spreads all through the varicose veins, pushing the blood out and reacting with the vein wall. The sclerotherapy in the foam kills the vein wall, making it shrivel away and close. The gas in the bubbles is then released.
In expert units, this gas used to make the foam sclerotherapy is either carbon dioxide or a combination of carbon dioxide and oxygen. Carbon dioxide dissolves very quickly into the surrounding fluid, and oxygen is used up by the cells.
In non-expert units, they use air as this is cheaper. However, air is 80% nitrogen which does not dissolve. This then can pass up through the right heart towards the lungs to be breathed out. However, 1 in 4 people have a communication from right heart to left heart. In these, nitrogen bubbles can pass to left heart and then brain. This can cause visual disturbance and even – very rarely — small strokes.
Therefore, it is very important to check which type of air is used in the foam sclerotherapy.
Make sure your interventional radiologist does NOT use air for sclerotherapy.
Once the foam sclerotherapy is passed into all of the little varicose veins, coils can be put in the big veins to close down the system and take the pressure off of the little varicose veins.
Conclusion
I hope you feel less fear and more peace. Even if you’re still waiting to see a doctor, my sincere hope is that you feel more empowered to have a conversation with your doctor and make an educated decision about your treatment. Or even that you feel empowered to find a different doctor.
Thankfully, you have that choice! (The Interventional Vascular & Vein Center in Utah is my choice for treatment stateside.)
I am so proud of myself for wading through hours of research until I finally discovered Dr. Whiteley and his team. Beyond a doubt, I know that I received the correct diagnosis and treatment for PCS — and I live about 95% pain-free now!
It wasn’t easy, and it certainly wasn’t cheap, but I believe I deserve the BEST care in the world. And, I found it. I feel no shame or guilt in telling you that — because you deserve the BEST too!
I vividly remember the day I found The Whiteley Clinic. “I’m going to London to get treated for PCS,” I told my husband. He was skeptical, hesitant, and truly thought I was nuts. But I stuck to my guns.
“I’m going with or without you,” I said. “I know for sure that this is the best doctor for me, and I’m going. I hope it’s with you, but I’ll go alone if I have to.”
Happily, I didn’t go alone. We went together in June 2019, and enjoyed our time in London.
Some might say it’s too expensive or too much trouble to travel across the ocean for medical treatment when there are good doctors in the US. I disagree.
My life is priceless. My health is priceless. And, as I said above, I deserve the very best.
So do you. 🙂
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References:
Have you been fearful of PCS because of what you’ve read online? Did you feel confused and disempowered because of false information? Do you know how to talk to your doctor before treating pelvic congestion syndrome?
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.