The pain during and after sex, chronic pelvic pain, and bloating is getting worse. What’s wrong with me? Am I imagining these symptoms? Am I going crazy? My Ob-Gyn doesn’t believe me and thinks I’m nuts!
These and countless other questions are asked daily by millions of women around the world suffering from pelvic congestion syndrome (PCS). Unfortunately, much of the medical community including insurance companies does not believe PCS exists. It’s not uncommon for women to be given the option to choose between a hysterectomy or a referral to their local psychiatrist.
If you are reading this article, you can be confident that your are NOT alone. PCS DOES EXIST! You are not crazy…anxious perhaps but not crazy. I mean let’s face it….if any normal person went to 10+ doctors with pain, fatigue, constipation, overactive bladder, heavy legs, pain with intercourse, and heavy periods and was told “it’s all in your head” I don’t think anyone would blame that person for acting a bit “emotional”.
The purpose of this article is to explain the basics of PCS, what causes it, and how it can be treated. It is recommended that you also read “The 5 Vascular Causes of Chronic Pelvic Pain” for additional background.
As a disclaimer, the information provided is for educational purposes only. Please contact your physician with questions that pertain to your own health.
What is Pelvic Congestion Syndrome (PCS)?
PCS is a vascular problem of the veins in the pelvis. In PCS, blood flows BACKWARDS in the veins towards the pelvis rather than towards the heart. Physicians use the terms “insufficiency” or “reflux” to describe blood flowing backwards in the veins. Venous insufficiency/reflux can occur in the legs and the deep veins of the pelvis. When gravity is brought into picture as with prolonged standing or sitting, blood “refluxes” even more into the pelvic veins leading to PCS symptoms. Since venous insufficiency/reflux is the underlying problem that causes PCS, the term Pelvic Venous Insufficiency or PVI is now used instead of PCS.
Who gets PVI and what are the risk factors?
PVI generally affects women of child bearing age, especially those who have had multiple children. However in some cases, PVI can be seen in young women who have never had children as well as in women going through menopause. Pregnancy places significant stress and pressure on the pelvic veins. During pregnancy there is increased blood flow in the pelvic veins that can result in the veins getting engorged. This engorgement of the veins can lead to valvular damage inside the veins and result in the development of varicose veins in the pelvis. In addition, the rise in estrogen during pregnancy can weaken the vein walls and cause them to dilate or expand leading to blood pooling in the pelvis. Other risk factors include having a retroverted or “tipped” uterus and polycystic ovaries.
I have pain during and/or after sexual intercourse. Is this common?
Pain with sex is called dyspareunia. Dyspareunia is the most sensitive symptom of PVI and along with other symptoms should warrant further investigation by your healthcare provider. However, dyspareunia can also be due to numerous other medical conditions which is why a thorough Ob-Gyn evaluation is critical before being referred to a vascular specialist.
Dyspareunia is the most sensitive symptom of PVI and along with other symptoms should warrant further investigation by your healthcare provider.
What are other symptoms of PVI?
Other symptoms of PVI may include the following:
- chronic pelvic pain (CPP)
- dysmennorhea (painful menstruation)
- heavy menses
- vaginal/vulvar fullness or varicosities
- increased urination
- irritable bowel symptoms
- hip pain
- lower back pain
Many women have chronic pelvic pain including some of my friends. Do we all have PVI?
While chronic pelvic pain (CPP) is common, it is unlikely that you and your friends all have PVI (although it’s not impossible). CPP is defined as persistent, noncyclic pain (not affected by menstrual cycle) in the pelvic region that lasts for more than 6 months. Generally, a woman will see her primary care provider as the first step in getting evaluated for CPP. Statistically, the most common causes of CPP include endometriosis, adenomyosis, and uterine fibroids. It is important that women get evaluated for these conditions as they can often be treated. However, because the symptoms of PVI can be similar to endometriosis and other conditions, women often do not get referred to a vascular specialist for PVI evaluation.
Statistically, the most common causes of CPP include endometriosis, adenomyosis, and uterine fibroids.
How is PVI diagnosed?
First and foremost, a thorough history and physical exam is needed. Often the history alone can give an experienced physician a good idea as to whether a patient may be dealing with PVI or some other condition. Transvaginal US or MRI is also commonly done. Based on the results of these studies, a venogram may be recommended to further determine whether there is venous reflux in the pelvic veins.
My Ob-Gyn performed diagnostic laparoscopy and didn’t see anything to explain my symptoms. Can I still have PVI?
Absolutely! It is not uncommon for women to undergo diagnostic laparoscopy for chronic pelvic pain (CPP). Often the Ob-Gyn is looking for endometriosis, fibroids, or other causes to explain the CPP symptoms. Since many ob-gyn are not familiar with PVI or believe that it exists, it is not on their radar to look for things such as engorged pelvic veins. Sometimes transvaginal US or MRI will show engorged pelvic veins (varicose veins in the pelvis) but then nothing is seen during the diagnostic laparoscopy. Why?
First, a woman is lying down on the OR table and is often dehydrated from not having anything to eat/drink since midnight. Second, carbon dioxide gas is pumped into the abdomen during laparoscopic procedures. This gas causes the pressure inside the abdomen and pelvis to increase and leads to decompression of the pelvic veins, similar to popping a balloon. Even if it is known that a patient does not have any other condition to explain their symptoms, it is not uncommon for insurance companies to require a diagnostic laparoscopy prior to covering any treatment for PVI. It’s insane!!!
I need a referral to see a vascular specialist but my Ob-Gyn won’t provide me with one because he/she doesn’t believe in PVI. What should I do?
Try to have a talk with your physician and see if you can explain your reasons for wanting a referral. Show him or her “The 5 Vascular Causes of Chronic Pelvic Pain: What Every Primary Care Provider Should Know“. Most will be reasonable and provide you with a referral. In my experience, I have found Ob-Gyns to be very receptive to learning about the vascular causes of chronic pelvic pain as it is an area that is not traditionally a part of their expertise. No physician can know everything in medicine. If your Ob-Gyn is reluctant to at least explore the possibility of PVI, ask your primary care physician for a referral to a vascular specialist or find another ob-gyn. However, it cannot be emphasized enough that a thorough Ob-Gyn evaluation is necessary BEFORE being referred to a vascular specialist.
My vascular specialist wants to perform a venogram. What exactly is he/she looking for?
During a venogram, your vascular specialist is looking for potential causes to explain the PVI symptoms. Typically, PVI is associated with venous reflux in one or both of the ovarian veins. However, vascular compression syndromes such as May Thurner Syndrome (MTS) or Nutcracker Syndrome (NCS) can also cause PVI symptoms. If someone has had prior deep vein thrombosis (DVT) and there is a chronic blockage of a pelvic vein (i.e. iliac vein), than this too can cause PVI symptoms. Superficial venous insufficiency of the legs can also play a role in PVI.1 The image below shows the areas of the abdomen, pelvic and lower extremities that the experienced vascular specialist must investigate to provide a proper evaluation of the patient presenting with PVI.
Ok I’m confused. I thought pelvic congestion syndrome (or what is now called pelvic venous insufficiency) was caused by ovarian vein reflux. Now you’re saying that May Thurner Syndrome, Nutcracker Syndrome, and other conditions can also cause PVI?
That is correct. There is so much that we don’t know about PVI and yet there is a lot that we have learned. As previously stated, PVI was generally attributed to ovarian vein reflux. That’s the textbook answer. However, we have now learned that May Thurner Syndrome can cause blood to reflux backwards into the pelvic veins and cause similar symptoms to ovarian vein reflux. Likewise, Nutcracker Syndrome can cause reflux of blood down the ovarian vein. Therefore, how does a physician know whether the reflux of blood into the pelvic veins is coming from 1) valve malfunction in the ovarian veins, 2) blood coming up the left leg, hitting the May Thurner compression point and refluxing into the pelvic veins, or 3) left renal vein compression forcing blood backwards through the renal vein and down the left ovarian vein into the pelvis?
As you can imagine, even for the experienced vascular specialist, PVI cases can be extremely challenging to treat. Sometimes a multi-disciplinary approach is needed between an IR, vascular surgeon, cardiologist, and transplant surgeon. Since there are multiple causes of PVI, we have now grouped MTS, NCS, post thrombotic syndrome, superficial venous disease, and ovarian vein reflux into a broad group of disorders known as pelvic venous disorders (PeVD). To better classify patients based on their symptoms and physical findings, a new classification scheme was recently developed by a panel of venous experts.2
When I see a vascular specialist, how do I know if he/she is familiar with all the potential complexities of PeVD so that I get the proper care and treatment?
This is a great question and one that is difficult to answer. The best way to find a knowledgable physician in your community is word of mouth. Also listen to what your gut tells you about a physician. Even if the physician does not have all the answers but is willing to work with you to find the answers than that is a good sign. Finally, never be afraid to get a 2nd or even 3rd opinion. Do not be afraid of offending your physician. It’s your body!
We are all patients at some point in our lives and all of us would like to have the physician that has the combination of knowledge, experience, and great bedside manner. However, not all physicians have this combination and this can make selecting your vascular specialist a bit difficult. If you find a physician that you feel is knowledgable and has a reputation for being technically good, don’t discount him/her if their bedside manner is not up to par. Conversely, just because someone has a great bedside manner doesn’t mean that they have any clue as to what they are doing. PVI affects your QOL; it is NOT life-threatening. You have the time to research your physicians, read about your condition, and make an educated decision on what to do next.
What conservative (non-procedure) treatment options are there for PVI?
There are not a lot of conservative treatments available. Gonadotropin-releasing hormone drugs (e.g. Lupron Depot) which block ovarian function can sometimes relieve pain. Progestin hormone therapy has also been used with some success. These conservative treatments would be prescribed by your Ob-Gyn. Weight loss can help with venous insufficiency in the legs and occasionally the pelvis. The improvement in symptoms from weight loss alone can be enough for a good QOL in some patients.
If conservative therapy fails and there is significant reflux in the ovarian veins, how is this treated? Is it painful?
PVI is often treated with ovarian vein embolization (OVE), a minimally invasive same-day procedure in which the ovarian vein is closed off with metallic coils to prevent blood from refluxing down the vein and pooling in the pelvis. While OVE has been shown to be successful in many women, the procedure is often not covered by insurance due to the lack of large clinical trials.
OVE is not painful per se during the procedure. It is commonly done with conscious sedation (twilight sedation). The procedure can take 1-2 hrs. After the procedure, many women may get crampy abdominal/pelvic pain and back pain. Sometimes the pain can get severe especially during the first 48-72 hrs. Up to 40% of patients can get a post embolization syndrome that includes a low grade fever, abdominal/pelvic pain, nausea, and fatigue. This post embolization syndrome can last for ~ 1 week. Even after this post embolization syndrome has resolved, many women will have lingering pain for weeks to months. Some days will be worse than others, and it is not uncommon to feel as if one is taking one step forward and two steps back. I generally tell my patients that the way they feel 6 months after the procedure (whether it’s OVE or iliac vein stenting) is what they will be left with.
I underwent OVE over 6 months ago and my symptoms got worse not better. Why?
PVI is a complicated vascular condition to treat, even in the best of hands. While every physician hopes that OVE will improve symptoms, for some patients it does not. This can be due to many reasons. In my own experience of treating hundreds of women with PVI, I often find that if there is severe compression of the left common iliac vein (i.e. May Thurner Syndrome) that was not recognized, then OVE that is done BEFORE stenting the left common iliac vein can can make PVI symptoms worse. However, not every physician agree with this thought process and there is much debate about this. The downside of this theory is that many more women will end up with stents that can lead to other complications down the road. The upside is that in those women with both ovarian vein reflux and severe May Thurner Syndrome who get stented first, up to 80% of them will never need OVE. Regardless of which side of the debate your physician lies, it is important for him/her to be familiar with the possible causes of treatment failure and outline their game plan PRIOR TO the treatment. This builds trust between the patient and physician.
What if I go through treatment with an experienced vascular specialist and they are unable to help me?
This is a very REAL possibility that patients must come to terms with early on, and it should be discussed in the initial consultation. Because PVI is so challenging to treat, there will be cases where no matter what is done and even in the best of hands, there is minimal improvement. I tell all my patients that I cannot guarantee that I can help them; all I can do is use my knowledge and abilities to try and help them. This is clearly evident in my approach to Nutcracker Syndrome, for example.
In NCS, the left renal vein is compressed between the aorta and the superior mesenteric artery (SMA). The left renal vein is a difficult to vein stent, and there is a risk of stent migration to the heart. I have personally had to extract stents from the heart in patients who were transferred to me from other institutions. Therefore, while many patients come to me to see if they truly have Nutcracker Syndrome, I do not treat NCS myself. Rather I work closely with surgeons who may be able to offer other treatments such as left renal vein transposition. In this way, a multidisciplinary approach is key. All physicians want their patients to get better, not worse. Even if we cannot completely resolve a patient’s symptoms, our hope – at the very least – is to improve their symptoms so that they are more manageable.
I’ve read about women getting a hysterectomy for PVI. While it is more invasive, I’m done having children and this seems like an easier option rather than potentially going through lots of smaller procedures like OVE or stenting. Why is a hysterectomy not encouraged?
PVI is a vascular problem. Many women have gotten a hysterectomy before undergoing evaluation by a qualified vascular specialist only to find that the surgery did not relieve their symptoms. If the woman is young, she can no longer have children.
One potential complication of an open hysterectomy that is rarely if ever discussed is the future risk of small bowel obstruction (SBO). An SBO is a blockage in the small bowel/intestine that results in severe abdominal pain and distention, nausea, bilious vomiting, and in some cases requires surgical removal of a portion of the bowel. The main cause of an SBO is adhesions (scar tissue) in the abdomen. Adhesions are not there if you have never had abdominal surgery. They only develop once you have had abdominal surgery for ANY reason.
The importance of this fact is that one should not undergo abdominal/pelvic surgery unless it’s absolutely needed. Is the risk of getting an SBO years down the road high after a hysterectomy? No…but why have that risk at all? While laparoscopic surgery has been shown to lead to less adhesions than open surgery, the risk is not zero.3 In fact, it is the periprocedural complications of hysterectomy such as wound infection and development of post operative abscess that give rise to SBO more than surgery itself.4 Therefore, one really needs to look at the pros/cons of undergoing hysterectomy for PVI, especially if they have not yet seen a vascular specialist. While there are patients who have gotten significant improvement and even resolution of their symptoms with hysterectomy, in my experience this is more the rarity than the norm. I see more patients having improvement of symptoms for a few months after hysterectomy, only to have the symptoms return and they are back to square one.
One potential complication of an open hysterectomy that is rarely if ever discussed is the future risk of small bowel obstruction (SBO)
I have been diagnosed with PVI, MTS, NCS, MALS, and POTS. Which one should be treated first?
This is a complicated question to answer and one that is increasingly being asked by patients. First, when a patient comes to me with all of the above conditions, I am very skeptical of their vascular workup. While anything in medicine is possible, it would be the rarity not the norm for a patient to have all of these conditions. It would be similar to someone presenting with lung cancer, breast cancer, stomach cancer, and brain cancer all at the same time. It’s statistically unlikely.
What is more likely is that the patient has symptoms that the vascular specialist is not familiar with or is making an incorrect assumption. For example, I had a young woman who came to me for a 2nd opinion. She was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and right leg swelling a few months after giving birth. Her US was negative for DVT.
After an extensive history and physical exam, I suspected that she may have a bloodclot in her her left iliac vein. I ordered a CT with contrast to evaluate her iliac veins. It turned out that she had had an extensive left leg DVT at some point in the third trimester or shortly thereafter that did NOT extend downwards past the left groin. Since most US exams are only from the groin downwards (the pelvic veins are not evaluated), the clot was missed. Since she was never placed on blood thinners, her left iliac vein scarred completely closed. Blood was diverted to her right iliac vein through her pelvic veins resulting in right leg swelling. She also had shortness of breath and felt lightheaded due to the slow return of blood from her left leg to the heart (thus the POTS diagnosis).
Our team opened her left iliac vein with a stent and restored drainage of the left leg. This resulted in improved blood return to the heart and resolution of POTS symptoms. Since blood was now flowing through an open left iliac vein instead of being diverted to the right iliac vein, her right leg swelling resolved. In essence, this patient did NOT have POTS but was misdiagnosed.
When a patient presents with multiple diagnoses, it is up to the experienced vascular specialist to do a thorough investigation. While it is possible to have multiple vascular compression syndromes, this should be the exception not the rule.
Can PVI affect men?
Yes. However, the symptom presentation is different. While men can get CPP, they can also present with scrotal pain, low back pain, hip pain, and fatigue. Often the scrotal pain is due to a varicocele, which is caused by venous insufficiency/reflux in the testicular vein (the counterpart of a woman’s ovarian vein). Besides pain, a varicocele can be a cause of infertility in men. A varicocele can be treated surgically by a urologist or minimally invasively by IR with a procedure known as varicocele embolization. This procedure is nearly identical to OVE and involves the use of metallic coils to close off the testicular vein. The advantage of this procedure is that it avoids any surgical incision and has high success rates.
What if my insurance won’t pay for OVE?
For those of us who treat PVI, our hearts go out to our patients that we cannot help due to insurance denials. Ask your physician to do a peer-to-peer with the medical director of your insurance company. Sometimes speaking on the phone and explaining the situation can get coverage overturned. If your physician is unsuccessful, then the burden lies on the patient to try and work things out with their insurance company. If this too is unsuccessful, paying out of pocket is an option if you can financially afford it. Keep in mind that large academic centers and hospital systems will charge significantly more for procedures than independent private physicians.
PVI is ruining my life and my relationship. My significant other thinks I’ve gone crazy. What do I do?
First and foremost, remember that you are not alone. Millions of women suffer from PVI and the vast majority of them will never get help because they don’t know what it is they have. Secondly, it is crucial to bring your significant other with you to the consultation with your vascular specialist. During the consultation, the two of you will not only learn more about PVI but it will be your opportunity to ask questions, get answers, and dispel myths. In my experience, it’s not uncommon for a couple to come in with obvious stress in their relationship and one hour later leave the office with not only a better understanding of PVI but also more acceptance of their partner’s condition.
- Ahuja R, Garg T, Sudheendra D. Management of Patients when Superficial Venous Disease Arises from Pelvic Escape Points. Semin Intervent Radiol. 2021 Jun; 38(2): 226-232.
- Meissner M, Khilnani NM, Labropoulos N, et al. The Symptoms-Varices-Pathophysiology classification of pelvic venous disorders: A report of the American Vein & Lymphatic Society International Working Group on Pelvic Venous Disorders. J Vasc Surg Venous Lymphat Disord. 2021 May;9(3):568-584.
- Angenete E, Jacobsson A, Gellerstedt M, et al. Effect of laparoscopy on the risk of small bowel obstruction: a population based register study. Arch Surg. 2012;147(4):359-365
- Sheyn D, Bretschneider C, Mahajan S, et al. Incidence and risk factors of early post operative small bowel obstruction in patients undergoing hysterectomy for benign conditions. Am J Obstet Gynecol. 2019 Mar;220(3):251.e1-251.e9