So, You've Been Diagnosed With Pelvic Congestion Syndrome? (here's what you need to know)

So, you’ve been diagnosed with Pelvic Congestion Syndrome (PCS)? What now? Here’s what you need to know — from causes & symptoms to treatment options & what has or hasn’t worked for pain relief from someone who has PCS. Also, how to talk to your doctors to make sure your PCS isn’t a symptom of underlying compressions like Nutcracker or May-Thurner Syndromes.

UPDATE! In September 2019, Professor Mark Whiteley published the first ever book solely about PCS — to educate patients and doctors on what PCS is, and the best ways to diagnose and treat it effectively.

So, you’ve been diagnosed with pelvic congestion syndrome?

What now?

From one PCS sufferer to another, I hope to tell you some of what you need to know so you can make the most informed decision for your care.

I am not a doctor or in the medical field at all, though after all my research, I feel like I should have some letters behind my name! Please take this as information only. It is not intended to diagnose or treat or replace the care provided by a qualified medical professional of your choice.

Now, I’d like to give you some helpful information and encouragement that you aren’t going to find anywhere else on the Internet.

Not that I have it all figured out — I don’t. But, since I’m writing in layman’s terms, I hope this post can be a “one-stop shop” for those of you who are recently diagnosed with PCS and are wondering what the eff you’re supposed to do.

Now that we’ve got that out of the way… let’s discuss pelvic congestion syndrome (PCS).

Chronic Pelvic Pain & Pelvic Congestion Syndrome

Chronic pelvic pain is a very common problem among American women, accounting for 10 to 15% of referrals to gynecologists. An even smaller percentage of that number will end up with the diagnosis of pelvic congestion syndrome.

Pelvic congestion syndrome (PCS) isn’t a common condition, for sure. Although, it may be more common than realized, simply because it’s so misunderstood and often missed (source).

PCS is considered a chronic pain condition with no known cause and no known cures. Although, there is a fairly high success rate and decrease in pain with pelvic vein embolization.

So, the purpose of this post is to say, “So you’ve been diagnosed with pelvic congestion syndrome… here’s how to cope/deal/find answers and be your own best advocate.”

In January 2019, I went to the emergency room after experiencing over a month of pelvic pain, heaviness, left flank pain, and anxiety and depression. This all followed a urinary tract infection in late October of 2019 and led to a serious decline of my mental health, too.

Because of the UTI and left flank, back, and lower pelvic pain, I truly believed I had a kidney stone. But, I left the ER with diagnoses of cervicitis and pelvic congestion syndrome and referrals to a gynecologist and a urologist.

First, what in the heck is Pelvic Congestion Syndrome?

When I was in the emergency room, the ER doctor explained PCS like this: “You basically have varicose veins in your pelvis.”

Gee, thanks. That’s super helpful, dude.

As someone who has no varicose veins anywhere on her body, you can imagine that this description really wasn’t super helpful. I mean, I know what varicose veins are, but how do they exist inside my body??

Ok, so what is pelvic congestion syndrome, really?

According to Johns-Hopkins:

Like varicose veins in the legs, valves in the veins of the pelvis become weakened and don’t close properly. Instead of defying gravity and returning blood to the heart, the valves allow blood to flow backward and pool in the veins, causing pressure and bulging. (Source.)

The British Society of Interventional Radiology describes PCS like this:

Pelvic venous congestion syndrome is also known as ovarian vein reflux. It is a cause of chronic pelvic pain in approximately 13-40% of women. Chronic pelvic pain is pain in the lower abdomen which has been present for more than 6 months. Pelvic congestion syndrome is therefore a painful condition often caused by dilatation of the ovarian and/or pelvic veins(rather like varicose veins but in the pelvis) . Varicose veins are commonly seen in the legs when the veins become less elastic and the valves that stop the blood from flowing backwards stop working. This causes the blood to pool, due to gravity, causing enlarged, bulging and knotty veins. This is also what happens to the pelvic veins in pelvic venous congestion syndrome (PVCS). This pressure results in the pain of PVCS and may also cause visible varicose veins around the vulva, vagina, inner thigh, sometimes the buttock and down the leg(s). (Source.)

Now, what are the symptoms of pelvic congestion syndrome?

Symptoms of Pelvic Congestion Syndrome

Symptoms of PCS vary from woman to woman.

PCS commonly begins during pregnancy, however this is not always the case.

My PCS symptoms started more than 13 years after my last pregnancy — so again, all women are unique and different.

PCS pain is usually on the left side of the body, though it can occur on the right side or both sides concurrently.

Pain can be a dull ache or sharp or throbbing pain.
Pain worsens during or after intercourse — but not always.
The pain can be in one or a combination of places, including the lower back, around the anus, in one or both labia, going down the legs, down the buttocks, the left or right flank, or can simply feel like menstrual cramps.
A feeling of heaviness or fullness in the pelvis is commonly reported.
Mood swings and depression are common in women with PCS.
Sometimes, there can be a clear or watery vaginal discharge — but not always.
Periods can be heavier than usual — but not always.
Headaches
Abdominal bloating
Constipation, IBS, rectal pressure
Tenderness of ovarian point on palpation
Visible varicose veins in the tops of the thighs, vulva, or labia
Urinary pain and/or frequency and/or stress incontinence
Pain that is not related to the menstrual cycle
Sciatica

The tell-tale sign of PCS pain is that the pain worsens when up and around and being active and is relieved by lying down.

Causes of Pelvic Congestion Syndrome

This condition is very misunderstood, and as you’ll read below, often mistaken for other pelvic disorders, like PMS, endometriosis, and ovarian cysts.

In truth, the cause of PCS is unknown.

It can occur in both men and women, but much more often in women between the ages of 20 and 40 and who have had one or more pregnancies.

Rather than saying “these are the causes of PCS”, we can more accurately say, here are the risk factors for PCS:

women between age 20-40
usually women who have had 2 or more children — but not always (men can have PCS too and don’t have children)
pregnancy
absence of vein valves due to abnormal development
compressions like Nutcracker Syndrome and May-Thurner Syndrome — but this is VERY rare

Super vague, huh?

Truly, research and treatment for PCS is a fairly new and understudied area of medicine.

Update! Please check out Pelvic Congestion Syndrome: Chronic Pelvic Pain & Pelvic Venous Disorders by Professor Mark Whiteley. This is the most comprehensive and first EVER book published about PCS. You will learn what PCS really is, why compressions are rare, and how PCS is best diagnosed and treated.

It’s not something you can control with diet or exercise. There don’t seem to be genetic tendencies toward it, though that could change as more research is done.

PCS pain is often mistaken for…

PMS
Perimenopause
Work-related or stress or occupational injury/stress
Endometriosis, ovarian cysts, uterine fibroids
Bowel pathology
Pelvic inflammatory disease
Inflammatory bowel syndrome

I cannot reiterate enough how under- and mis-diagnosed PCS is.

If I hadn’t had a visit to the ER with a CT scan to check for kidney stones, I very likely would still be wondering about my mysterious symptoms.

Ironically, a CT scan is not the best diagnostic tool for PCS. MRI, ultrasound, venography, and laparoscopy are much more reliable.

The gold standard of PCS diagnostics? The trans-vaginal and trans-abdominal ultrasound using the Holdstock method.

Since all of us women are uniquely and wonderfully made, PCS can and probably will look slightly different from woman to woman. Therefore, I’d like to share what my own PCS symptoms were/are.

My Personal PCS Symptoms

As noted above, some of these symptoms occur sometimes, but not always. Certainly, I did not and have not experienced all of these symptoms, while some symptoms have come and gone.

Here were my most notable PCS symptoms:

Left flank pain that sometimes radiates to my lower back and lower pelvis and feels like a cross between menstrual cramps and a stitch in my side from running
Some abdominal bloating, especially after an active day
A feeling of fullness or heaviness in my lower pelvis. Some days, it feels like I have to walk slowly because something might fall out.
Shooting pain around my anus and in my left labia — but, thankfully, this is one of my rare symptoms.
Urinary frequency and stress incontinence (This may be from PCS or from my pelvic floor dysfunction or a combination.)
Anxiety and depression

When I was active, the pain always worsened as the day went on. Then, I would go to bed and wake up feeling almost 100% better.

Because of this, I spent the better parts of November 2018, December 2018, and January 2019 on self-imposed bedrest. Not the greatest quality of life, I’ll tell ya that much. 🙁

Since my diagnosis, I have only had one really terrible period. The pain was awful on the first day, and the bleeding was probably the heaviest I’ve ever experienced in my life. And I used to have really, really bad periods.

I’m also publishing this post-diagnosis but have already been to The Whiteley Clinic in London, UK for pelvic vein embolization and the diagnostic gold standard ultrasound I mentioned above. Four weeks out, I’m doing great! I will post a full update in another post soon, I promise! 🙂

So, You’ve Been Diagnosed With Pelvic Congestion Syndrome?

First, I am really sorry that this is where you find yourself.

This condition (I hate the word “disease” for PCS) has likely severely impacted the quality of your life. It sucks. It’s not fair.

Second, YOU are in charge of your own care.

Whether you choose surgery or not, whether you choose a natural approach or an allopathic approach, whether you take meds or not — no matter what, you’re the captain of this ship.

As they say, there’s more than one way to skin a cat. And, I believe there’s more than one way to deal with PCS. We will discuss this further below.

Third, educate yourself.

I’ll link to some resources throughout this article, but there are lots more to be found. Google can be your friend, but it can also be your worst enemy and scare the sh*t out of you.

Reading the book Pelvic Congestion Syndrome by Professor Mark Whiteley will not only give you accurate scientific information from over 20 years of study and treatment of PCS, but you will learn what diagnostic imaging to ask for as well as what type of treatment is best for PCS.

Fourth, I highly recommend NOT joining any of the pelvic congestion syndrome support groups on Facebook.

In my experience, they aren’t supportive at all. You’re going to get a lot of “worst-case scenarios” and doom and gloom in those groups that will scare the sh*t out of you.

What you will not get is accurate medical advice. This can only be given by a doctor who is versed in diagnosing and treating PCS. Joining a Facebook group is no replacement for proper medical care and education.

Fifth, know that PCS can exist as a condition on its own. Or, it can be a symptom of other, underlying conditions, known as “compressions”.

The two compressions I am most familiar with are Nutcracker Syndrome and May-Thurner Syndrome. It is imperative that you bring these possible compressions up with your doctors, as they likely won’t mention them.

Compressions are grossly under-diagnosed. May-Thurner Syndrome is more common than Nutcracker Syndrome, however. True Nutcracker is VERY rare (again, proper diagnostics here are key).

If you do have one or both of these compressions, then your PCS may be a symptom and you need to address the compressions WHILE you address the PCS.

CT imaging of possible Nutcracker Syndrome in 35 year old female with pelvic congestion syndrome

This shows my left renal vein at 50% compression between my aorta (bottom circle) and superior mesenteric artery (top circle). This is indicative of Nutcracker Syndrome, however the trans-vaginal/trans-abdominal ultrasound using the Holdstock Method is the only way to diagnose for certain.

PCS as a Symptom of Underlying Compressions

In fact, I learned about compressions in a PCS support group on Facebook — the doom and gloom ones I warned you about above. It is only for that reason that I am thankful that I was part of the group, but I left it just as quickly as I joined.

Because compressions were not mentioned during my diagnosis (it was the ER, after all), I decided I wanted to look at my CT scans for myself.

I requested the CD from the hospital, taught myself to read them, compared my scans to other scans on the Internet, and was anxiously afraid that I had Nutcracker Syndrome.

By this point in my diagnostic journey, I had had an appointment with a urologist — who diagnosed me with pelvic floor dysfunction and recommended pelvic floor physical therapy.

I asked him about the possibility of Nutcracker Syndrome, and he basically said, “Nope, you don’t have it.”

Like I said, I was veeeeeery suspicious because my scans looked an awful lot like the scans of Nutcracker I was seeing on the Internet. So, I called the urologist’s office back and asked them to take another look.

When the nurse returned my call, she said that my doctor, along with 3 other doctors in the office and a radiologist viewed my scans and all were sure that my left renal vein was not compressed.

I had a slight bit of relief, but my intuition kept urging me to keep digging. ALWAYS listen to your intuition when it comes to your healthcare. Always.

After my appointment with my interventional radiologist, he noted a 50% compression of my left renal vein “suggesting Nutcracker phenomenon” and noted that he would test for it during the procedure he was going to perform for diagnosing and treating my PCS — the venogram.

My point is simple: bring up possible compressions with your doctors and insist that you be checked for them.

However, it’s quite possible that your doctor won’t be using the most up-to-date diagnostics to check for compressions, which leads me to…

Pseudo-Nutcracker Syndrome

CT and MRI scans are performed while lying flat (the supine position). These diagnostics are actually not the best way to diagnose Nutcracker Syndrome — because there is no way to see if the vein is refluxing or truly compressed in the supine position.

Since publishing this post, I have learned from the world’s leading interventional radiologist, Dr. David Beckett, that what appears to be Nutcracker on a CT scan actually isn’t once the trans-vaginal/trans-abdominal ultrasound using the Holdstock technique is used.

So, many women have likely been stented for what appeared to be Nutcracker but actually wasn’t had the proper imaging and diagnostics been used.

Currently, The Whitely Clinic in the United Kingdom is paving the way and publishing the best and most modern research for PCS and pseudo-Nutracker Syndrome.

I had a video call with Dr. Mark Whiteley in April 2019, and learned that in over 5,000 pelvic vein embolizations performed at his clinics, only a small handful of women had TRUE Nutcracker.

What makes my pelvic congestion pain worse?

Sitting, especially if I’m not conscious of my posture/hunching at all
Sitting at my desk, even when sitting on an exercise ball
Riding in a car for more than an hour
Activity, especially activity that requires my arms to be over my head
Manual labor — shoveling, hauling firewood, gardening, etc. (basically everything that’s required around our homestead)

What makes my pelvic congestion pain better?

Lying down, resting, or sleeping — I’m always in less pain when I wake up in the mornings.
My heating pad
Hot water bottle
Showering where I turn the water as hot as I can stand it and let it flow over my left side, then turn the water to as cold as I can stand it and let it flow on my left side
Constitutional hydrotherapy
Gentle stretching before noon each day
Going for a walk early in the day
My organic memory foam mattress
Pelvic floor physical therapy

Some women note that NSAIDs (Advil, Aspirin, etc.) are helpful with their pain, but this has not been the case for me.

Here is a post I wrote called The Pelvic Congestion Syndrome Pain Management Starter Pack — where I got pain relief recommendations from many women who have PCS and are doing their best to manage their pain.

UPDATE!! I had 3 of 4 pelvic veins embolized on June 8, 2019, at The Whiteley Clinic in London, UK. I am in almost no pain now. Most of the time, I am in zero pain. If I overdo it in the garden or have a super active day, I might have a little bit of pain on my left side. But as of right now, I am only 4 weeks out of surgery. It can take up to 6 months to experience the full benefits.

Treatment Options for PCS

PCS is a non-cyclical condition — meaning it exists regardless of where you’re at in your menstrual cycle.

Many doctors’ first choice of treatment is hormonal.

Hormonal treatments are the least invasive and cheapest form of treatment for PCS.

However, PCS is non-cyclical. Yet, many doctors choose gonadotropin-releasing hormone drugs and/or birth control pills, believing that regulating estrogen in the body — which does dilate veins — will relieve the problem.

Again, I’ll reiterate that YOU are in charge of your own care, so if this is the route you choose to take, go for it.

Second, there is a day surgery procedure known as pelvic vein embolization performed by an interventional radiologist.

This is also a fairly minimally invasive procedure done while you are lightly sedated. I had this done on June 8, 2019, and it was successful!

A small incision is made in the groin or jugular vein (jugular is safest and preferred) and a catheter is inserted down the vein and into the gonadal vein and iliac veins, where a coil, spring, and/or sclerosant are placed.

To improve clinical efficacy and reduce perioperative and postoperative morbidity, percutaneous pelvic vein embolization therapy has been utilized. Since its introduction in 1993 (…) this modality has revolutionized the treatment of PCS. The procedure is usually performed at the time of diagnostic venography using a variety of embolic agents, including sclerosant foam and coils.

In several published series in the 1990s, success rates for reduction of chronic pelvic pain ranged from 50 to 80%. With advancements in technique, clinical success is achieved in 70 to 85% of treated patients. (…) (S)ignificant improvement in 83% of women in their overall pain perception levels. (Source.)

Here is a YouTube video showing the pelvic vein embolization procedure.

Here is a detailed description of embolization procedure.

I am seeking treatment at The Whiteley Clinic in the United Kingdom. They go through the jugular vein because it’s safer when embolizing the iliac vein — which, research shows, is over half of the issue with PCS.

Third, laparoscopic surgery is a procedure to tie the open veins.

It is a more invasive procedure, requires a general anesthetic, and a longer recovery period.

Fourth, some doctors opt for the most invasive approach: a full or partial hysterectomy.

Again, you are in charge of your care. Many women report complete recovery when their uterus and one or both ovaries are removed.

After speaking with my own gynecologist and Drs. Whiteley and Beckett in the UK about this option, they said, in their experience, it actually does not solve the problem. PCS is a vascular issue, not a uterus/ovarian problem. If you remove the uterus/ovaries, but don’t deal with the veins, you still have PCS. Then, the patient undergoes the hormonal shifts caused by removal of these reproductive organs.

What about Pelvic Floor Physical Therapy?

According to my gynecologist and many sources I’ve read, EVERY WOMAN CAN BENEFIT FROM PELVIC FLOOR PHYSICAL THERAPY.

Whether or not you’ve had children!

To date, there is currently not any literature investigating the role of physical therapy in PCS management. Regardless, a person may seek out a physical therapist specialized in pelvic dysfunction due to their chronic pain or incontinence issues. A physical therapist will be able to conduct a thorough evaluation, and design a rehabilitation program based off of a person’s impairments. Often due to the close proximity of PCS, the pelvic floor musculature can be affected. In this instance, physical therapists can provide specific exercises to improve optimal performance of the pelvic foor musculature. (Source.)

So, there’s no scientific evidence suggesting that pelvic floor PT can or may help PCS. That’s only because the studies aren’t being done!

Doctors, scientists, and researchers, we NEED you to start doing some studies on the relationship between PFD and PCS!

My gynecologist, interventional radiologist, urologist, and physical therapist have all recommended that I try pelvic floor PT for my PCS pain.

As someone who is separately diagnosed with pelvic floor dysfunction (PFD), I’m going to pelvic floor PT anyway. My urologist wants me to follow up after 12 weeks of pelvic floor PT to see if it has resolved the urinary issues I am having due to PFD.

I have an online friend who has nearly eliminated her pelvic congestion pain with pelvic floor physical therapy, so I believe it can be done and am hopeful!

(However, in my discussions with Dr. David Beckett, he says that PT may help with symptoms, but the symptoms of PCS and PFD can often be very similar. So, it’s difficult and transient to know which symptoms the PT is actually helping.)

UPDATE!! I started pelvic floor physical therapy in March 2019 and my pain significantly improved. My quality of life was so much better. Even though I ultimately decided that embolization was the best choice for me, I 100% believe pelvic floor PT improved my PCS pain because I was able to be up and around, living my life, with very minimal pain from PCS.

You you are your own best advocate!

This has been a really long post, so if you’ve made it this far, yay!

The bottom line is this: when it comes to your health, you are your own best advocate.

You know your body better than anyone. And if you aren’t paying attention to your body, START!

I believe we caught my PCS early. Many women suffer for years before they find answers.

But, I am also a highly sensitive person who is very in-tune with my body. I track my menstrual cycles diligently, pay close attention to my urinary and bowel habits and note changes, and eat a Real Food, nourishing diet.

I am highly sensitive to medications and supplements and can easily tell which supplements/medications are causing me side effects.

I recognize that not everyone is this sensitive to their bodies, but you can develop this habit — and you SHOULD!

If you’ve been diagnosed with PCS, the best thing you can do is to start keeping a notebook of things you notice, when your pain is worse/better, bowel and urinary habits, food journal, list of supplements and medications.

Most importantly, research your condition and write your findings, studies, and questions in this notebook and take it with you to ALL doctor appointments.

The road to finding a diagnosis and getting treatment for pelvic congestion syndrome is long and personal to each of us.

I opted to head across the pond to the UK and receive further diagnostic imaging and treatment. And, I am so thankful I did!

When I show up to doctor appointments and pull out my notebook, they are often very impressed. I’ve been told over and over how well-prepared and educated I am. Some docs like an informed patient; some don’t.

Either way, when you educate yourself, you EMPOWER yourself and become an active participant in your treatment plan and not just a patient who is having things done to her.

Again, if you find yourself reading this post, it’s because you’ve gotten a truly crappy diagnosis. And I’m sorry.

So, You’ve Been Diagnosed With Pelvic Congestion Syndrome? (here’s what you need to know)