Pelvic Congestion Syndrome

I am so excited to talk about pelvic congestion syndrome.  Since February I’ve been asking a lot of questions about this and I’ve really opened my eyes to see that this really is a part of the pelvic pain picture for many of my patients.  Correcting pelvic congestion isn’t terribly difficult and it can create a significant, if not complete, reduction in pelvic pain for some women.

Pelvic congestion is such a weird name – I both love and hate it.  I love it because some women say they feel “congestion” in their “pelvis” which makes perfect sense.  I hate the term because it also sounds so ambiguous.  Of course the pelvis is congested, there is a ton of stuff just shoved in there – like a Thanksgiving turkey.

What is pelvic congestion?  This is when the pelvic veins have enlarged so much that the valves that are supposed to be responsible for one way movement of blood are no longer doing their job.  This means that the blood goes both up and down.  When you get this two-directional movement in a vein it is considered to be demonstrating “reflux”.  When the veins are super distended, they are also called varicosities.  You’ve seen this before when you’ve been in a long line at the movies.  There’s that one overweight guy in shorts and he’s got that crazy purple vein bulging out.  It’s sticking out an inch away from the rest of his skin.  That’s a varicosity.  That’s what’s happening in your pelvis when you have pelvic congestion.  Okay, so not to that drastic degree, but you get the picture.

What are the symptoms of pelvic congestion?  The traditional symptoms will be listed below, but remember that everyone is different.  I think that doctors are taking a look at your collection of symptoms and then determining if you should move forward with diagnostic testing.

  • pressure in abdomen/pelvis
  • pain in the legs
  • pressure or pain in abdomen/pelvis/legs that gets worse at the end of the day
  • pressure or pain in abdomen/pelvis/legs that improves with lying down
  • pressure or pain in vulvar area or legs from pressing on abdomen or doing valsava (bearing down hard)
  • assymmetrical labias that became assymmetrical later in life
  • pain with sexual intercourse
  • pain with periods (or history of pain with periods)
  • urinary frequency or urgency
  • veins in the pelvis that are really easy to see
  • spider veins in the legs

How can pelvic congestion effect my pelvic pain if I have pudendal neuralgia?  If you have pelvic congestion alone, this can cause pelvic pain.  If you have pelvic congestions and sitting pain symptoms caused by pelvic nerves, then the dilated nerve can press on the pudendal nerve irritating it even further.  This situation is interesting because it’s like peeling away the layers of an onion in order to get rid of your pain.  It’s a step-wise process.

How is pelvic congestion diagnosed?  Gynecologists can diagnose this, but usually it’s interventional radiologists who are specializing in vein stuff.  If you just google pelvic congestion, you might find that there are a number of ways to diagnose this including MRI, ultrasound and venography.  There are pros and cons of these techniques, so I think it makes sense that you understand them because each physician is going to tell you something slightly different.  That being said, this is just my take on the procedures.

  • MRI – This is a picture of your pelvic veins over a 15 minute period.  This can be effected by what you ate, where your are on your cycle or any other number of factors.  I believe that if your MRI is negative, that does not rule out the possibility that you have pelvic congestion.  Some doctors will look at a negative MRI and tell you flat out that you don’t have pelvic congestion.  This is a little narrow minded and I recommend if you are in this situation that you get a second opinion from a doctor that doesn’t follow the same thought process.
  • Ultrasound – A vaginal ultrasound can show varicosities in pelvic veins, but the best opportunity to see this will be at the end of the day and while you are standing.  I have had patients do an ultrasound, but they aren’t standing.  So – I don’t know why we even bother if you are going to stay on your back.  Feel free to question why you are having a lying down ultrasound.  Don’t waste your time or your money.
  • Venogram – Dye is injected into the veins so that your doctor can see if you’ve got distended veins.  If you do, it will be clear to see if there are just a few that are an issue or if there are a whole lot of problems.  This is considered the best way to diagnose pelvic congestion syndrome.  This can be done with you asleep, so ask how your doctor does this.

How is pelvic congestion treated? Typically this is treated via embolization and/or sclerotization.  Embolization is when coils are placed in the vein – usually during the venogram.  Then, sclerotization is when a foam is injected into the stretched out vein so that it basically solidifies and the body absorbs it.  The blood will then go through all the smaller veins.  The pressure is relieved because you don’t have these bigger honker veins pulsing and throbbing creating pressure and cramping.

How did I get pelvic congestion?  Typically this results from a backwards movement of the blood in the veins that are supposed to leave the ovaries. This can be hormonal a lot of the time.  The hormones from pregnancy cause a lot of relaxation in the body and this effects the pelvic veins. Estrogen levels can make the veins more lax.  Typically women who have multiple pregnancies will experience this because of the increased blood volume in the pelvis, but women without any pregnancies can definitely get this too.  According to Dr. Andrew Goldstein, Dr. Irwin Goldstein and Dr. Caroline Pukall, authors of When Sex Hurts, all of this is the same reason women get hemorrhoids during pregnancy.  They say a hemorrhoid is basically a varicose vein.

My doctor doesn’t believe in pelvic congestion!  Ya’ll, we’re not asking your doctor to believe in the tooth fairy.  If your doctor doesn’t think that your set of symptoms could be due to varicosities in the pelvic veins, find a doctor who does think that this exists in the realm of possibilities for you.  To overlook something that could be as “simple” as this is really unfortunate.  There is a lot of hullabaloo that pelvic congestions is a “vague” and “ambiguous” diagnosis, but you know that your pain isn’t “vague” and “ambiguous”.  I think that pelvic congestion syndrome is a contributing factor to a lot of pelvic pain, and like I said before, for some people it can be the only issue they have.

 

If you have any questions, please email me at [email protected] or leave your question in the comment section below.

50 thoughts on “Pelvic Congestion Syndrome”

  1. Excellent text!
    Will you write about the role of the physiotherapy in this pathology?

    Thank you very much!

      1. Hi Sara,

        I don’t know if you are doing this blog anymore or not. But I was diagnosed with PCS about a year ago. I have been going through excruciating pain and after two different embolization procedures and a laparoscopy I still have veins on my overies. My symptoms seem to be getting worse. My legs are always swollen ( not scary run to the hospital) but still swollen. My legs have been feeling numbness and tingling, and I for one am plain tired of going through the motions of every day life. What is one to do? Is there any suggestions, any helpful advice? Anything….. Please help.

    1. Just had the procedure yesterday for the congestion. They found that I had varicose veins in the gonadal vein which was twisted. I did find out prior to this through a ultra sound standing up. I have had one pregnancy and that was 53 years ago. But is wasn’t until one year ago that I started having the worst pain in the pelvis. I thought it was in the rectum.
      It took all this time to get diagnosed and treated.
      We shall see if this works.

      1. How do you feel so far? I have a patient who has “rectal pressure” only when standing/walking but this goes away with any pressure applied to her rectum or when in the pool. Have you had any relief?

  2. How do I find a specialist in Oregon who specializes in proper diagnosis and treatment. I am desperate. I have suffered with chronic pelvic pain that is worse with sitting, driving, standing. The only time I am not in pain is when I first wakeup. I have suffered for alost 10 years and have suffered an unecessary hysterectomy that has taken away any life I had left. Thank you for your time.

      1. Grants Pass, but have seen so many physicians in the southern oregon area to no avail. I am willing to travel unless you have the name of someone local for me. I know it takes a special radiologist to get an accurate diagnosis. Thank you:)

        1. Hi Rachel,

          This is what I recommend. Contact Marcy Crouch in Portland and she will likely be able to give you the names of specialists and good pelvic floor PT’s in your area or at least within travel distance from you. 503 418-4500

          Let me know if I can help you again,

          Sara

  3. Hi Sara,

    I too have recently been diagnosed with Pelvic Congestion syndrome and need help finding a specialist. I have been going through pain for the last year and a CT scan with contrast found enlarged ovarian veins measuring 9.5 mm, worse of left side, varicose veins, and bilateral ovarian cysts that measure 2 and 3 cm’s. One cyst has been present this entire year and I am now having severe leg pain. The pain was originally in my abdomen area on the left and has now moved to the right with leg pains and bad abdominal bloating. It seems worse when I sit now that my legs are hurting. I do not have any insurance which makes this difficult but am desperate for this pain to go away. I live in Perris (CA) and am willing to travel to surrounding areas. Can you help point me in the right direction?
    Thank you,

    1. Hi Ashleigh,

      So sorry you are dealing with this pain. Who diagnosed you with Pelvic Congestion Syndrome? Do they know anyone in your area that can treat this? Usually an interventional radiologist treats this. I know that Dr. Hibner in Phoenix, Arizona treats this as well.

      Sara

  4. I was diagnosed with Pelvic Congestion Syndrome, I do get ocassional cramping, but nothing chronic. Does that mean the pain will get worse over time? Or was I misdiagnosed?

    1. Hi Vanessa,

      It’s really hard to say either way. I would definitely ask your doctor if they think you will get worse. However, it’s very possible that you will not.

      Sara

  5. Hi Sara,
    First off, thank you, this is a great resource. I’ve have had chronic pelvic pain for 3 1/2 years now, post child birth. I have seen a interventional radiologist in and she ruled out pelvic congestion syndrome as my ovarian vein was only slightly enlarged. Can you still have pooling in other veins in the pelvis? All my symptoms seem to lead to PCS, except for most of my pain is when laying down.

    Thanks for your time,

    Inga

    1. Hi Inga,

      I do believe you could have pooling anywhere. It is different that you have most of your pain when lying down. Have other issues like muscles and nerves been ruled out?

      Sara

  6. Hi Sara, I am a phyiscal therapist in Portland, Oregon and I have been diagnosed with pelvic congestion syndrome. I have seen 2 interventional radiologists with one embolization procedure and a stent placed in the left common iliac vein. I am trying to find an interventional radiologist that will treat the deep veins particularly the internal iliac veins which are incompetent. Do you know of an interventional radiologist that treats deep pelvic varices? I have seen Dr Hibner in Arizona and he has helped treat the superficial vulvar varices. I believe i need to treat the internal veins which are causing the debilitating pain. Thank you for any assistance.

    1. Hi Tracy,

      You might try to reach out to Marcy Crouch in Portland. She is a pelvic floor physical therapist and might know who can do deep pelvic varicoces in your area.

      Sara

    2. Dr. Torrance Andrews in Srattle, WA is a fabulous interventional radiologist and yes he treated my internal iliac vein as well as left ovarian vein.

  7. Hi.
    Thank you for your article. I’ve been passed around for the last 10 years, Dr to Dr. Many telling me that the pain in my legs had nothing to do with the pain in my pelvic area. Trying to push anti-depressants on me. Then finally someone did a CT scan and diagnosed me with PCS. Then proceeded to tell me they didn’t treat it. Gave me a referral to someone else that didn’t treat it. Now I’m just suffering with it every day. Not taking any medications because I am experiencing, for lack of a better word, a serious mistrust for the medical professionals I have dealt with. I currently have an iud. Copper. I honestly think that being put in either intensified the condition or started it. Either way, I live in the Houston area and can’t seem to find anyone experienced with the condition. Had I listened to the Dr’s here, I’d be the victim of a total hysterectomy, but I didn’t do it. Now I’m scared to go to anyone around this area, unless I know they specialize in treating this rather new condition. . . The new Women’s Center at Texas Children’s… hadn’t even heard of the condition as recently as this December. I won’t be am experiment and wind up with all my female parts destroyed like some women. That’s horrible. I’d rather suffer. Then again, sometimes the pain is intolerable. I’m allergic to anti-inflammatory medications, so I’ve got few ways to deal with the pain. Mostly hot baths help. Do you know of anyone remotely close that has expertise dealing with PCS? Thank you for your time.

    1. Hi Jennifer Lynn,
      I just now stumbled across this website and your comment, so I have no idea if you will see this or not. But in case you do…you need to find an interventional radiologist to treat PCS. I am 2 years post- embolization, and have about 50% improvement. I had 2 embolizations by Dr. Andrew Doe, http://www.houstonvir.com. I was not 100% impressed with this office but they might have completed more procedures in the last 2 years. At the least, it might be worth it to go talk to him. Things that have helped me the most post-embolization are elevating my legs, medical grade support stockings, my heating pad, high dose of Tylenol (when at the worst), great quality arch supports, and daily walking. Since it has been months since your original posting, I pray you have found some help!

    2. I was seen for sever pain and they told my husband I was having a panic attack! They ended up giving me a CT and the report Read; “The left ovarian vein is enlarged and numerous varices are evident in the left side of the pelvis. The uterus is retroverted. Ovaries are normal in size. Enlarged left ovarian vein and left pelvic varices raise the question of incompetent left ovarian vein and pelvic congestion syndrome.” THIS WAS IN 2013! They never said anything to me about the results! They just proceeded to give me a endoscopy the next day and let me go! I only got the results this week after requesting a patient account for the hospital that provided me with the radiology reports!

  8. Hi,
    This blog is amazing and I want to say a huge thank you!
    I’m 18 years old and I was recently diagnosed as I also have Endometriosis and there’s not much information about this condition, so when I found you, I was amazed!
    I have been told that my Mirena Coil may help to control my PCS, is this true? I am 1 month in and am battling with excruciating low abdomen pain, pain all through my groin, thighs and knees and not sure how to deal with it. Work is proving extremely difficult also!

    1. Hi Rebecca,

      Have you told your physician about the pain you are having? That is the first thing I would do. Perhaps it is not supposed to feel that way.

      Sara

  9. My OBGYN believes I have PCS, but is also concerned about other issues as well with my ovaries and possibly the sites of my tubal ligation and is performing diagnostic surgery soon. However I have recently began experiencing severe pain in my pelvis at night, continuing for hours after lying down. Is this normal with PCS or could it be something else? I have been experiencing the normal PCS symptoms for about 1.5 years now, but I have just been trying to brush it off until the pain landed me in the er a few months ago. I am curious if waiting that long could have led to the pain becoming more severe and lasting or could have possibly led to other issues.

    1. Hi Tiffany,

      Classically with PCS, you feel more pain in the evening, but you usually feel some relief when you lie down. Standing feels worse than lying down. I don’t know if the varicosities are pressing on a nerve, or if in response to the pain your pelvic floor muscles are tightening enough to create pain symptoms in the pelvis. I suggest you see a very good pelvic floor physical therapist to help assess and treat you for this new pain.

      Sara

  10. Hi there. I am a women’s health physical therapist in Portland and struggling with finding a provider to diagnose and treat PCS. I have a patient I suspect may have this and wondering if you have any thoughts on who I can send her to? I tried contacting Marcy Crouch at OHSU and she no longer works there. Please let me know your thoughts! Thanks so much!

    1. Hi Christina,

      I didn’t know Marcy wasn’t at OHSU anymore. Do you know where she is now? I was definitely referring to her. I would suggest looking through the IPPS, ISSWSH, SOWH and Herman and Wallace websites to find a good therapist. Also, I’d definitely talk to the therapist to make sure that they are skilled to treat your patient. I do know of two great therapists in Salem, is that too far?

      Sara

      1. Well I am a Women’s Health physical therapist here in Portland and want to refer her to an interventional radiologist to get diagnosed for PCS as I suspect she may have this. Thanks for your help.

        1. Yes, interventional radiology is the specialty that diagnoses PCS. I don’t know of any interventional radiologists in Portland, but if you can find another great therapist to talk to in your area, they might have some ideas. If you can find where Marcy went, I bet she might know of some.

          I do have to say though, I personally have had a few patients who I swear had PCS – all the symptoms, all the physical signs and our one interventional radiologist has never, ever diagnosed PCS when I’ve sent her a patient. I almost want to call her up and ask how many cases of PCS she actually has diagnosed. It’s a tricky thing because one date of imaging isn’t quite enough to make a diagnosis.

          Sara

  11. I have been suffering with strange symptoms for the past two months. It started with some abnormal pelvic pain right before my period in March. I also had what felt like a UTI with UTI symptoms, but a test revealed no infection. During that time, I developed deep, hot, achey pain in my arm and leg on the affected side. That pain lasted for several days before slowly fading throughout my cycle. At this point, I have intermittent pelvic pain which is sharp and crampy, almost feeling like a menstrual cramp on the left side of my pelvis. It is definitely worse after sitting for a while, driving and during my period. Both menstrual periods since this started have been MUCH more painful with cramping that only goes away with a combination of Aleve and Tylenol. I did not have this severe of cramps before. My arm, pelvic area, back muscles, and leg also seem to “fall asleep” when I sit with pressure on my left side or lie down at night on my left side or stomach. My pelvic area does not generally hurt while lying down on my back, but it is uncomfortable to lie on my stomach sometimes. My left leg feels full, and swollen, but it is not visible different than my right leg. I get some tingling on my right leg, but not as much as my left. I had some popped blood vessels in my left thigh and a large one the bottom of my right foot. I have had a T/V Ultrasound, an US of my leg arteries, and MRI’s of pelvis, brain, lumbar and cervical spine. All came back normal except some small issues in my lumbar spine. I have also had full blood work for deficiencies and autoimmune disorders the only out of range result was a Vitamin D level of 22. Could this be PCS? Dr’s are saying it’s nerves…I am not believing that theory because of how diffuse my symptoms are. I really believe the “paresthesias” are due to circulation and not due to my nervous system. Can PCS potentially cause these symptoms?

    1. Hi Amber,

      I haven’t seen anyone in my practice with symptoms involving the arm, but I don’t rule out that this could be circulatory.

      Sara

  12. This sounds exactly like my story, I was missed diagnosed given a hysterectomy I didn’t need. 1year later I was still in horrible pain finally diagnosed pelvic congestion. I thought great they know what it and they can fix it. Well, 5 embolizations 27 coils and 2titanium plugs. And I’m still not fixed. There has to be someone who can help me. I’m 42 n closed to no because of pain and swelling

    1. Hi Anonymous,

      Have you seen a pelvic floor physical therapist? 5 emobolizations sounds like a lot. Who did them?

      Sara

    2. Hi Anonymous,

      I’m sorry to hear that this is your story right now. Have you tried another approach like pelvic floor physical therapy or nerve blocks? Perhaps your pain is not stemming from only one source.

      Sara

  13. my story, I was missed diagnosed which led to a hysterectomy I didn’t need. 1year later I was still in horrible pain finally diagnosed pelvic congestion. The first embolizations worked on the right but not the left. I thought great they know what it is and they can fix it. Well, 5 embolizations 27 coils and 2titanium plugs later I’m headed back for procedure #6. the embolizations usually last 18 months then I’m back to where I started. This started in 2005 and I see no light at the end. Between depression,anxiety n pain my life is not enjoyable. I’m 42 three teenagers an I jus can’t do much. I need a doctor willening to get a team of doctors willing to go over my case. I am a veteran in San Antonio tx and I am willing to travel to a doctor who can figure out treatment when the embolizations are not workin. Are there alternative treatments?

  14. my story, I was missed diagnosed which led to a hysterectomy I didn’t need. 1year later I was still in horrible pain finally diagnosed pelvic congestion. The first embolizations worked on the right but not the left. I thought great they know what it is and they can fix it. Well, 5 embolizations 27 coils and 2titanium plugs later I’m headed back for procedure #6. the embolizations usually last 18 months then I’m back to where I started. This started in 2005 and I see no light at the end. Between depression,anxiety n pain my life is not enjoyable. I’m 42 three teenagers an I jus can’t do much. I need a doctor willening to get a team of doctors willing to go over my case. I am a veteran in San Antonio tx and I am willing to travel to a doctor who can figure out treatment when the embolizations are not workin. Are there alternative treatments?

  15. Wow! First & foremost, Sara thank you for this article!

    I actually just got done with the procedure for my pelvic congestion syndrome, and it may not be over. Here’s my story!

    I’m 26 and have 4 kids, aged 8,7, 6& 5..2 girls, 2 boys..I always had complicated pregnancies, all starting after my first child, so we got my tubes tied and cauterized. 2011 after my last child and the tubal ligation, the pain was the worst. The doctors had me in their offices left and right, telling me I had polyps and cysts on my ovaries. Apparently, they were so bad that I needed to have surgery. Well, I said I can’t afford to be out so I decided to deal with it. That is exactly what I did, and now it’s been 5 years since I’ve seen a gynecologist because after 4 years back to back in doctor offices I was done. Well, sex was increasingly getting harder for me to enjoy which meant my husband wasn’t going to be getting it that often, so I went in to see a gynecologist in my area at MomDocs. She examined me and gave me a paps smear which everything turned out ok, but as soon as she put that speculum inside my whole world was rocked. I had the most pain, and my husband and I swore it was ALL her fault. She had me come in for an ultrasound, and she told me I had ruptured, hemorrhaging cysts on my left ovary and just some cysts on my right ovary. However, she said it wasn’t anything that couldn’t be treated but could understand my pain
    I was thinking after 5 years they had came back to truly haunt me..oh no..now the party really begins! She gives me birth control and an 800mg ibuprofen for the pain. Unfortunately, everything just escalated from there. The pain only got worst and worst and it was preventing me from my normal activities which was getting pretty scary for this 26 year old wife and mom of 4. I decided it was time to go to the ER that same week. I couldn’t stand, sit, BREATHE without feeling stabbing, nerve shocking pain all throughout. Thankfully, the doctors at the ER could see my pain all over me. Honestly, my tolerance for pain is up there and I will stick it out for as long as a person will go, but from reading everyone’s stories I feel this is something we just do as women!! Well, the doctors weren’t just buying this was cysts causing me all of this, so they ordered me a CT-SCAN and that’s when they saw it all. They saw I had multiple dilated veins in my pelvis and this was the cause of the pain and they saw only ONE very harmless cyst on my left ovary. There was no hemorrhaging anything, which they said after 3 days they don’t think would’ve went away after an ultrasound. They gave me hydrocodon, Ondansetron, and referred me to another doctor to get a referral to see a pelvic pain specialist. When I tell you they sent us on a wild goose chase it was the most depressing thing ever. I went from researching the right terminology to use to having to go in and pleading my case. I even had people who claimed on their websites to fix pelvic pain just to speak with the doctors and them tell me that they don’t deal with veins in the pelvis only the legs. If you can just imagine being in pain that doesn’t stop day after day going to appointments and wasting time and money to be told at the end, “oh, I can’t do that!” It would’ve been so nice to hear that at the beginning when you know how much I’m going through! Or you don’t and you’re really just trying to “play” along to get another patient. This is how I felt especially when I got a referral from my obgyn office to a physical therapist. This gentleman told me without looking at any of my labs that getting the procedure to fix my veins would not work and we need to work from the OUTSIDE IN! He was advising I come in 3 days a week, and after an hour of being in his office my husband’s patience and especially mine was gone! We left with 3 more referrals. Literally, it took us going to that appointment to get the one place that matters in Arizona. Vein Institute of Phoenix, Dr. Kelli Favata, was GOD SENT! She didn’t deal with the pelvis but because all of this was affecting my legs she gave me a new prescription called Vasculera and a prescription for some compression full body stockings. This was supposed to help the blood flow easier, and the pills for my veins and in combination with my ibuprofen and oxycodon (refilled instead of hydrocodon), she gave me a recipe that helped get me back on my feet. The most valuable part of this was her relationship with a Pelvic Pain Specialist that surely deals with this one thing, and his name is Dr. Agha in Scottsdale. I still haven’t recieved my stockings yet because they are custom made, but with just those prescriptions I was ready to have my surgery to get back to normal. I saw Dr. Agha same day I saw Dr. Favata, because they knew the pain I was in and I needed my life back ASAP. He was awesome! He explained everything to me and how the procedure would go, and even why this all happened. Apparently, my left ovary is the one that he believes did all the work on my pregnancies and is the reason I’m having most of my pain on my left side. If both ovaries had equally contributed I would not have been in this mess he pressumes. He did all of this without looking at any of my records, any of the imaging from my ct scan and could tell that this wasn’t something that JUST happened and it was accumulated over the years. He got me the fastest appointment for this procedure, which I’m assuming is called an embolization which was the following Friday. So, that brings us to today where I’m furiously typing this all from my bed. He had a week to look at my ct scan and told me today that he had no idea it was this bad. He said that I had the worst case of pelvic congestion syndrome he’d ever seen, so no wonder I was in so much crazy pain and nothing I did could stop it. He said all throughout my pelvis there were bad veins, but he was going to work step-by-step to assist the problem. He went in through my neck with a needle-like tool and fixed what he said were the three huge veins causing most the problems. Three metal coil springs permanently placed on these veins, and some cramping with an achy stressed neck. It was an hour procedure and now 7 hours later I can feel things moving, adjusting just weird feelings, and even in my left leg just tingles down through my leg. This facility was top notch in Scottsdale, his entire staff were all amazing! He gave us his personal number because he knows that there is a lot going on and he wants to be notified every step of the way. This is the type of person, ladies suffering from pelvic congestion syndrome need! Someone who isn’t going to just operate and then say okay you’ll be fine see you for your followup! I feel like whatever else needs to be done, I’m in good hands so that depression of it has been lifted. I will put both doctors’ information below, but that is my experience. I may still have a little while to go but I feel like the hardest part is over which was finding someone who understood and cares enough to QUICKLY come to your aid! I hope this post helps someone out who is looking for help! Good Luck, Ladies!!
    Dr. Favata- http://www.vipveinsaz.com
    Dr. Agha- SimonMed Imaging LLC (480.614.8555)

    1. Hi Paris,

      Thank you for sharing your story. I think testimonies like this are always helpful for others who feel lost and frustrated.

      Sara

  16. I’ve had extreme pelvic pain for 8 years and unable to stand or walk for the last 3 years. I’ve recently been diagnosed with bilateral pelvic congestion syndrome and had an embolization. My pain is now worse than ever, how long did recovery after the procedure take for you? It has been 4 weeks for me. The first week my symptoms were totally gone then they came back. I’ve been told this is normal and to wait, but how long for?

    1. Hi Hannah,

      Were you attempting to ask this question to a specific person who already commented on the blog? If so, you can click “reply” under their comment.

      Sara

  17. anyone recommend doctors in new orleans or Louisiana? confirmed pelvic congestion a but over a year ago and cannot deal with this pain. I’ve been told going on a IUD will help but i haven’t found anything concrete showing that is true.

  18. Had anyone had any success stories with the embolization? All I see is bad. I was recently diagnosed with PCS and I’m looking at embolization my left ovarian vein is 15mm in size normal is 5. I have had 5 births and in lots of pain and very depressed. I am 39 years old. I’m waiting insurance approval and surgery date but after research I’m just not sure the surgery will help me at all. Please help!

  19. Hi, I am so relieved (and sorry) to see others experiencing these awful life stopping symptoms. I’m 38-have a 13 year old. When I was pregnant, I had vulva vericosity??? Or something like that ? so it’s odd to me that maybe this is vein related? I had it so bad and then once I delivered it disappeared.
    I have always been healthy…(outside of a dermoid cyst removed years ago and some ovarian cysts that come and go. Doctors say that’s not causing the issues. When I read this list of symptoms I could not believe that it is my list.
    The heaviness, all around distended feeling, pressure, dull aching pain, and definitely worse end of the day-it’s taken me from mild to literally in bed at 5pm. AMEN TO THE PERSON WHO TALKED ABOUT THE STANDING ULTRASOUND because I’m Positive had I done this before I would maybe be off to a solution. I’m in Orange County CA -92663 is the zip. Can anyone please give me any guidance…I don’t know what kind of radiologist/doc to see. I have been just hoping this goes away and I’ve waited too long-I can’t function like this anymore. Thank you so much-and prayers to you all.

  20. Thank you all for helping me to not feel like an island. Just reading everyone’s comments has given me a sense of support and relief. I was diagnosed with PCS in June , 2016. I was 47 and had been diagnosed with IBS 15 years ago, treated for UTIs, back pain, you name it, over the last 15 years thinking this unbelievable abdominal and pelvic pain was related to those things. I had terrible neck pain, on my left side and at times could not even raise my head off the pillow, without physically moving it with my hands. I attributed so much of my pain to the fact I was a faux painter and worked long hours on my feet, doing a physically laborious job. In April of 2016 I had what I thought was another UTI, but never really got better. I only had relief when lying down, but life doesn’t really allow for that, so I would push on. At my request, my Gyn got me an abdominal CT, which showed the PC. During the time I was waiting for my CT and the results, my calves started to ache to the point that it was hard to walk and after a few weeks my leg muscle just started deteriating. I noticed when shaving(it had been a good week since I had shaved). It made me aware that my pants were a little looser too (that has not happened to me in my 40’s), so I went and bought scales and realized I had dropped 8 pounds in 2 weeks.( I knew my previous weight,
    because I had been at dr.s 2 weeks before. I continued to loose another 10 pounds over the next 2 1/2 weeks. My Gyn, said he had never heard of that happening with PC. I went onto a radiologist, who told me they had never heard of that happening with anyone’s legs. No one seemed to really listen to that part. They made me feel crazy and offered up NO suggestions as to other types of Drs to see or anything, even though it was entirely apparent my leg muscle were so small and just hanging from the bones like a much older person’s. I had to lye flat on my back all day, only getting up to go to the bathroom. The pain in the bones in my legs was unreal. They could not support me, without the muscles to help. Lying on my back and staying off of them, started bringing my muscle back. I had an embolization on July 11,2016. I found it to be a miserable recovery and got about 50% better for a few months. I was able to walk around, but not for any distance or time. I stayed swollen all over, especially my abdomin. My circulation was not good. I could not keep my legs or arms bent for any length of time. In December my legs started to bother me more and I began having sharp chest pains. I visited the ER twice the week before Christmas(following my Gyn’s advice) I explained each time, that I had had vein embolization for PC. I explained that I needed a stress test for my heart, because test while lying down may not show the
    problem with pelvic congestion. Since they knew nothing about PC, they treated me, like I was just some web MD junkie, just looking for attention. I finally got the stress test on my second visit to that ER. They still treated me crazy and told me that they would have to check me into the hospital and keep me over Christmas weekend, (this was at 11 am on Friday, December 23)and schedule me for Monday, because there would be no one to give stress tests until then. (I was in Richmond, Va, at a major hospital. There most certainly was stress testing available) It was like they were testing me to see how I respond to that, like they were calling my bluff or something. It was so unreal. They finally,(miraculously)were able to give me one about an hour later. And a CT of my chest and abdomin. My heart looked good, but the PC was back full force. I had a full hysterectomy on Jan 3, 2017. They took the coils out of me at that point. I could feel a difference within hours of waking up, from having the coils out of me. Come to find out, the coils have nickel in them. They are not platinum, as many claim. I am allergic to nickel, so my body was not happy to have them in there. So if you are considering embolization, make sure you are not allergic to the metals. I have recovered from the hysterectomy, but the symptoms of PC came back last week. My legs are aching ,I have discomfort in my abdomen, and the wonderful depression and fatigue. Any suggestions as to my next step? Grady

  21. I was seen for sever pain and they told my husband I was having a panic attack! They ended up giving me a CT and the report Read; “The left ovarian vein is enlarged and numerous varices are evident in the left side of the pelvis. The uterus is retroverted. Ovaries are normal in size. Enlarged left ovarian vein and left pelvic varices raise the question of incompetent left ovarian vein and pelvic congestion syndrome.” THIS WAS IN 2013! They never said anything to me about the results! They just proceeded to give me a endoscopy the next day and let me go! I only got the results this week after requesting a patient account for the hospital that provided me with the radiology reports!

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