In this post with accompanying video, Professor Mark Whiteley — the world’s leading vein researcher — and I discuss and disprove several common myths about pelvic congestion syndrome. We hope you feel empowered with this information to seek out the best treatment for yourself — and maybe even pass this along to uninformed doctors who are years behind on PCS diagnostics and treatment.
Pelvic congestion syndrome can be confusing, anxiety-inducing, depressing, and scary. If you’d like to talk to someone who’s been where you are and who is now living completely symptom-free after a successful pelvic vein embolization, I’m available for Peer Support Consults. Contact me here!
When gynecologists finally understand pelvic congestion syndrome, it’s going to set so many of us free!
Until then, we have all kinds of myths about pelvic congestion syndrome to deal with.
This this post, accompanied by a video interview, Prof. Mark Whiteley and I discuss and disprove 9 myths about pelvic congestion syndrome, including:
- Hysterectomy is the only effective treatment for pelvic congestion.
- Compressions like Nutcracker Syndrome and May-Thurner Syndrome are the cause of PCS.
- Embolization coils are dangerous.
- You better have kids before embolization because you won’t be able to after.
Public Service Announcement: Don’t join PCS Facebook Support Groups!
While I appreciate how social media allows us to come together from across the globe to talk about everything from elections to recipes to our health, I can say without hesitation that the pelvic congestion syndrome Facebook support groups are not the place to find the best information about PCS.
In fact, many of the pelvic congestion syndrome myths Professor Whiteley and I are disproving in this post/video CAME FROM the Facebook support groups!
Of particular interest to me is how common it is to see compression syndromes (Nutcracker and May-Thurner) linked to both the cause of PCS and the discouragement from receiving embolization as treatment.
The horror stories in those groups are, well, horrific. Reading through those groups is enough to make anyone with PCS doubt whether they’ll ever have their life back.
I’m sorry for the misinformation and myths about pelvic congestion syndrome that are circulating in those groups. But, I can’t do anything about that, so I just keep posting accurate and hopeful information about PCS here.
At this time, I do not support or share any other research or information about PCS other than:
- the PCS posts on All The Nourishing Things
- Dr. Whiteley’s book and his team’s published studies
- The Whiteley Clinic website
Myth 1: Total hysterectomy is the only effective treatment for pelvic congestion syndrome.
Pelvic congestion syndrome is a VEIN problem, not an organ problem.
The veins involved in PCS are most commonly the left ovarian, left internal iliac, and right internal iliac veins. Occasionally, the right ovarian vein is also involved, but less commonly.
Even if a hysterectomy removes the ovarian veins, it does not remove the internal iliac veins. Because the internal iliac veins are involved in PCS in 97% of cases, leaving them in the body means the patient STILL has PCS.
Now, they have PCS and no uterus or ovaries.
There is nothing wrong with the ovaries, uterus, fallopian tubes, bladder, cervix, labia, clitoris, or anything else with pelvic congestion syndrome.
Now, it’s certainly possible to have other co-morbidities such as endometriosis, cancer, uterine fibroids, ovarian cysts, etc. Those things can co-exist with pelvic congestion syndrome, and a total hysterectomy may be the treatment necessary for those issues.
However, if the problem is pelvic venous reflux, then a hysterectomy isn’t only an ineffective treatment, it’s completely unnecessary.
Pelvic vein embolization is much simpler, cheaper, and requires a fraction of the recovery time of a hysterectomy. It does not, however, pay for your doctor’s fancy car and vacations the way a hysterectomy does. 😉
If your doctor is telling you that a hysterectomy is your only treatment option for PCS, this is absolutely false. Additionally, if your doctor denies pelvic vein embolization as an effective treatment, they are 20 years out of date. In either case, find a new doctor.
Myth 2: Embolization coils are dangerous because they’re made of metal and will cause reactions, toxicity, illness, etc.
The concern of putting metal inside the body is legitimate. Heavy metal toxicity causes all sorts of health complications, including autoimmune disease and neurological problems.
If your doctor isn’t sourcing coils from a reputable company and those coils are made of nickel, then it’s possible you could have a reaction.
However, pelvic vein embolization coils made from inert metal like platinum and from reputable companies (like Cook) are very, very safe.
Another sub-myth? That platinum-dominant coils have tungsten in them, which corrodes and causes health problems.
All of these common surgeries require metal to be left in the body:
- gallbladder removal
- bowel resection
- hip/shoulder/knee replacement
There is way more metal in a couple of clips for a gallbladder removal than embolization coils. Embolization coils used by The Whiteley Clinic are very long, fine, and thin and made of inert platinum.
The Whiteley Clinic has embolized thousands of women, and have no reported cases of illness or toxicity caused by the metallic coils.
Dr. Whiteley reassures us that coils have been used in people for over 40 years. His team’s success rate with coils is published here and their safety record is published here.
Ask for your coil numbers in case there is ever a recall or problem with them.
Myth 3: Embolization coils are dangerous because they can perforate organs, such as the kidney, ovary, or bladder.
“If you’re using reputable coils and you’ve also got a doctor who knows what they’re doing, that’s virtually impossible,” says Dr. Whiteley.
The coils are actually very soft because they’re meant to coil up inside the vein. Dr. Whiteley acknowledges that a surgeon could cause a perforation when putting the coils in, say, if they were rough or using a stiff guide wire. That surgeon could blame the coil later, but it is likely user error, not a problem with the product.
Inexperienced doctors may put coils too far down or too far up, causing irritation around areas too close to the coils.
To prevent coils getting too close to sensitive areas, like the bladder, urethra, vagina, or a nerve, a skilled interventional radiologist will use foam sclerotherapy. This is another layer of protection to keep coils away from sensitive areas and organs.
After the coils are inserted into the vein, the vein dies around the coils and forms a protein wall of scar tissue. It would be very difficult for these soft coils to penetrate through that scar tissue and pierce an organ. And, in all of Dr. Whiteley’s 20 years research, there has never been a single case of a perforation caused by pelvic vein coils.
If you believe that your pelvic vein embolization coils have caused an organ perforation, Dr. Whiteley would very much like to review your case. You can contact him here.
Myth 4: The coils get cold inside the body, and you will feel it and know they’re inside you.
If your body is 98.6°F, then anything inside your body is also that temperature. It is impossible for an item that is totally encased in a constant temperature to exist at either a lower or higher temperature.
Now, our nerves often cause us to feel sensations of heat or cold. So, if there is some nerve irritation or sensitivity and those nerves are firing a “cold” message, then it’s possible you’ll feel a cold sensation.
But, if you stuck a thermometer inside your body to measure the temp of the coils, they would most assuredly be the same temperature as the surrounding tissue.
Myth 5: Compressions like Nutcracker and May-Thurner Syndromes are the causes of Pelvic Congestion Syndrome, therefore it isn’t the pelvic veins that need treatment; it’s the compressions. Treating the veins makes compressions worse.
This is backward reasoning. We should actually try to avoid stents — not coils. Stents used to treat compressions such as NCS and MTS need long-term care and attention. Pelvic vein coils need no long-term care or attention.
True Nutcracker Syndrome (compression of the left renal vein) and May-Thurner Syndrome (compression of the left common iliac vein against the lumbar spine) are actually very rare — present in just 1-2% of PCS cases (source).
If the reasoning is that PCS is caused by compressions and so coils will make you worse, then how is it that not a single one of Dr. Whiteley’s thousands of patients have ever gotten worse with no compression treatment and only pelvic vein embolization?
Dr. Whiteley and his team are doing upwards of 10 pelvic vein embolizations per month and they almost never find a true May-Thurner or Nutcracker.
Myth 6: You can’t get pregnant if you have PCS or after pelvic vein embolization.
Completely false! Women absolutely can and have become pregnant after pelvic vein embolization!
Dr. Whiteley and his team are the only researchers in the world who have published a study proving this is false.
And in fact, women who’ve had a hard time conceiving because sex was too uncomfortable find such relief after pelvic vein embolization that it’s easier for them to become pregnant!
Conversely, we’ve actually had many women who’ve found sex too uncomfortable, who have had their pelvic congestion syndrome treated and then have gone on to have babies very, very easily because they had the PCS treated. So it was actually the reverse! We’ve actually found that people who find getting pregnant difficult because of discomfort and pain, and once we’ve treated them, they go back to a normal sex life, and actually they get pregnant. We’ve got a whole host of patients now who actually have got pregnant because they have the coils and have had the congestion treated. — Dr. Whiteley
He does, however, advise women to wait at least 3 months after embolization before getting pregnant just to give the coils time to settle in the body and for the scar tissue of the dead vein to form completely.
Dr. Whiteley’s personal theory (that he has not proven) is that pelvic congestion syndrome creates so much stasis and stagnation in the pelvis that treating the refluxing veins actually improves the health of the entire pelvis and makes it a better environment for sustaining a pregnancy.
Myth 7: C-section scar tissue contributes to the development of pelvic congestion syndrome.
False. A C-section cuts only through the skin, subcutaneous fat, muscle and peritoneum, and into the uterus.
PCS involves veins behind everything involved in a C-section: retro-peritoneal veins — veins
One can have pain from a C-section scar. And if you also have PCS pain, then you can have pain from 2 sources. But no, a C-section doesn’t cause the pelvic veins to reflux.
Myth 8: You can’t have abdominal massage after pelvic vein embolization.
Totally a myth! You can do anything you like after you’ve had your pelvic vein embolization!
Dr. Whiteley says it might be wise to wait for a week after your embolization before having an abdominal massage, but that’s just to make him feel better and not for any scientific reason. 😉
The Best Information About Pelvic Congestion Syndrome
Make sure you check out all the pelvic congestion syndrome information here at All The Nourishing Things.
- The Gold Standard of Pelvic Congestion Syndrome Diagnosis with Professor Mark Whiteley
- How to Find a Qualified Interventional Radiologist to Treat PCS with Dr. David Beckett
- My Pelvic Vein Embolization at The Whiteley Clinic
- 11 Questions to Ask Your Doctor Before Treating Pelvic Congestion Syndrome
- The PCS Pain Management Starter Pack
- So You’ve Been Diagnosed with Pelvic Congestion Syndrome?
- Read more about my story at The Whiteley Clinic and more here!