I was recently diagnosed with pelvic congestion, may thurner and “possible” nutcracker syndrome and I’m curious if anyone else has had similar symptoms, been diagnosed with all 3 and what route you went for treatment. Back in February of 2025 I began have pain in my lower left abdomen, felt like it was sitting right on top of my left ovary. I went to urgent care thinking uti, because I also had an increase in urination and urgency, and I tested negative but they gave me meds anyways. Pain persisted and I went to the ER, they were no help and said “you probably have a cyst, not worth the radiation it’ll clear up.” I then went to my gynecologist and after three new birth controls and 4 internal ultrasounds they found varicose veins and diagnosed Pelvic Congestion syndrome. I was referred to an Interventional Radiologist where he completed a CT with contrast. He said he found “severe compressions” indicating potential may thurners and a compression that would also suspect Nutcracker, not as severe. He said he would like to embolize the pelvic congestion and potentially place a stent but “he will make a decision once he’s in there” and determine if the nutcracker is severe. He did say however, that my symptoms related to Nutcracker more rather than the May Thurner. So, I’d like to know, what symptoms did you have? Did they progress? It’s been a year and a half now since the pain began and I feel as though it’s progressed quickly. I’m scheduled for my procedure June 17th and nervous about both the pain from recovery and living with a stent at 26 years old.

Here are my symptoms and their progression, no symptoms have left they’ve just coupled up and increased.

My symptoms that appeared in the first 1-2 months:
Pain in my lower left abdomen right on the ovary, almost cramping or stabbing sensations

Symptoms appeared after 3-6 months:
Deep hip pain on left side
Lower back pain on left side
Left flank pain

Symptoms that appeared 12 months in:
Left thigh ache
Ache in heaviness in both ankles

12 months plus:
Pain in my upper left back almost up to my shoulder blades
Balloon feeling under my left ribs right around the bra strap always moves around never goes above the bra strap area
Burning pain in my left ribs around the bra strap area and lower always moves around never goes above bra strap area
Weird sternum sensation

If anyone has advice, similar progression, or similar symptoms I’d love to know!

Hello everyone,

I thought I’d give you an update about my diagnositc workups and vascular diagnoses (pelvic congestion, reflux and more). I am trying to explain how I got there and how relevant the findings could be for HFS and CPPS. This will be a long post, but the length was necessary to understand the full picture and clear questions that might arise without it.

First I am going to give a quick rundown of my symptoms and the duration:

After many years of Hard Flaccid Syndrome (HFS ranging from mild at best to severe at worst) and chronic pelvic pain, I finally underwent extensive vascular imaging that revealed objective abnormalities which may be clinically relevant.

My main symptoms include:

• Hard Flaccid Syndrome (persistent contracted/semi-rigid flaccid state)
• Penile pain and spasms
• Penile sensory changes and episodes of numbness
• Perineal cramping and vibration sensations
• Pelvic floor pain and tightness
• Pain after ejaculation and during sexual activity
• Left greater than right testicular pain
• Anal and coccygeal pain
• Groin pain
• Lower back pain
• Abdominal pain
• Flank pain on both sides, sometimes extending from the lower abdomen upward toward the rib cage and into the back
• Urinary symptoms
• Testicle pain coming in phases

Background

My symptoms began abruptly at age 18.

I woke up one morning with severe localized pain in the penile shaft. Within 10 hours, I developed what is now commonly described as Hard Flaccid Syndrome. It’s really hard to say whether or not I injured my penis in some way the day before. I did do repeated masturbation the day before, but I went to bed fine and had no pain during the evening or at night. I only woke up with it, so the two situations might be unrelated and I always did doubt that I injured my penis somehow, as I was always rather cautios.

Over the following days and weeks, I experienced:

• Painful nocturnal erections
• Significant reduction in penile sensation
• Persistent penile pain
• Pain after ejaculation, particularly in the perineal/rectal region especially with following erections
• Progressive pelvic floor dysfunction
• ED to some extent

The acute penile pain gradually resolved over several months, and the major sensory loss eventually improved. However, the pelvic pain, perineal spasms, Hard Flaccid symptoms, and associated dysfunction persisted.

Before this event, I had years before occasionally experienced:

• Testicular pain since adolescence (including episodes diagnosed as epididymitis)
• Burning sensations around the urethra
• Painful erections after frequent sexual activity

These symptoms were relatively infrequent and were not a significant problem at the time.

Imaging History

I underwent many MRIs over the years, including a pelvic MRI in 2022.

In late 2025, I underwent more specialized vascular imaging after a referral that specifically mentioned suspected pelvic congestion syndrome (“Pelvic Congestion” was explicitly stated in the referral indication). This included:

• A CT scan of the abdomen and pelvis with contrast
• 2 MR angiograms with contrast, 1 (MRA) of the pelvis and proximal left thigh, and the other MRA of the abdomen

Because pelvic venous disease was already part of the clinical suspicion, these studies were explicitly performed with attention to pelvic venous congestion and venous outflow abnormalities.

I later sent all imaging studies to an interventional radiologist with experience in pelvic venous disorders.

After reviewing the CT scans and MR angiograms, he stated that the most notable finding was a dilated pelvic vein, consistent with a possible pelvic venous congestion disorder.

Importantly, the radiology team that performed the CT scans and MR angiograms also had access to my earlier pelvic MRI from 2022 and used it as a direct comparison study.

On re-evaluation, they noted that the same pelvic vein appeared significantly more dilated in 2022 compared to the current imaging, while on the more recent scans it appeared reduced in size and less prominent. They described it as having decreased over time, whereas in 2022 it had been clearly more enlarged.

Importantly, this same finding was already visible on the 2022 pelvic MRI but had been overlooked in the original radiology report.

This suggests that pelvic venous abnormalities may fluctuate over time, may partially regress, and may also be missed unless specifically assessed in context.

Dynamic Duplex Ultrasound

I was then referred to an interventional angiologist with experience in pelvic venous disorders predominantly in women.

Interestingly, he primarily had clinical experience in female patients with pelvic congestion syndrome. He explained that he also uses female pelvic venous hemodynamics as a reference framework when interpreting male pelvic venous flow patterns.

Standard ultrasound in the supine position showed little. However, because I explained that my symptoms are much worse while standing, he repeated the examination dynamically while standing.

During standing and Valsalva, he observed:

• Retrograde flow in the left internal iliac venous system
• Significant reflux in the left-sided pelvic veins
• A continuous downward reflux pathway that could be traced from the abdominal venous system through the pelvis, groin, perineum, and into the penile region

He noted that similar hemodynamic patterns are well known in female pelvic congestion syndrome, where reflux can extend toward the pelvic venous plexus and external genital region (labial venous drainage) during standing and straining.

In my case, he stated that a comparable reflux pattern could be followed into the penile structures.

Based on these findings, he recommended a super-selective pelvic venography/phlebography.

Super-Selective Pelvic Venography Findings

A super-selective venography/phlebography with a vein catheter through my right groin vein with contrast was performed a few weeks ago.

The venography confirmed:

• Secured pathological reflux into the left internal iliac vein
• Marked pelvic venous congestion
• Extensive collateral venous pathways, indicating chronic rerouting of blood flow
• Large left paravertebral collateral veins draining into the distal inferior vena cava
• Cross-pelvic drainage predominantly through the sacral veins to the contralateral side
• Pronounced varicosities of the pudendal vein extending down to the pelvic floor
• Venous drainage across the midline and into the left inguinal canal

A possible compression of the left common iliac vein (approximately 70%) was identified on duplex ultrasound and considered suspicious for May-Thurner syndrome. However, the invasive venography did not demonstrate a clearly hemodynamically significant compression, so May-Thurner remains a possible but unconfirmed contributing factor. An IVUS wasn’t done to further investigate it.

No convincing evidence of Nutcracker syndrome was found:

• The left renal vein showed no relevant compression.
• The proximal left testicular vein was narrow and showed no relevant reflux during Valsalva.

Symptom Reproduction During the Procedure

One of the most striking aspects of the procedure was that selective catheterization and contrast injection was purposfully done in a way to try to irritate and reproduce my symptoms. Some of my characteristic symptoms were reproduced.

These included:

• Perineal vibration/spasm sensations
• Anal pain
• Coccygeal pain
• Groin pain
• Flank pain on both sides
• Lower back pain
• Abdominal pain, including radiation from the lower abdomen toward the upper abdomen and rib cage

In particular, selective catheterization of the varicose pudendal veins extending to the pelvic floor reproduced symptoms in the exact anatomical region where I frequently experience spontaneous perineal spasms in daily life.

The sensations were not identical to my complete Hard Flaccid state and didn’t really trigger it (though I already was severely flared through the stress of the procedure), but they were interestingly similar and occurred in the same anatomical location.

An Embolisation could be a potential treatment option, which would get done in phases, so each phase require another entrance trough my groin vein with a catheter. I have not had my follow up appointment with him yet to speak about the details and potential treatment avenues to follow.

Additional Clinical Interpretation

I was also evaluated by a gynecologist/pain specialist with a neuropelveology background.

He diagnosed me right away with May Turner syndrome, Nut Cracker Syndrome and Dunbar syndrome. However me and a few other patients have doubts about the validity of these diagnosis as they were done rather quickly and based more on static images than the normal tests required.

However, he proposed that vascular abnormalities such as pelvic venous congestion could secondarily irritate the pudendal nerve and potentially autonomic pelvic nerves, resulting in a secondary pudendal neuropathy.

He also discussed that anatomical or biomechanical factors such as pelvic posture (including scoliosis and hyperlordosis) may influence venous compression dynamics in the pelvic/iliac region, although this remains a theoretical contribution rather than a definitive cause.

In addition, therapeutic and diagnostic options were discussed, including:

• Diagnostic laparoscopy to directly visualize pelvic veins (varices) and surrounding structures
• During such a procedure, potential decompression or neurolysis (nerve release) was discussed as a possible combined approach in selected cases, if clinically indicated and desired
• Possible decompressive surgical approaches in selected vascular compression syndromes (e.g. ligament release procedures in relevant anatomical entrapments)
• Physiotherapy focusing on posture, core stability, and lumbar-pelvic mechanics
• PF PT wasn't dismissed, but not the priority in comparison to normal PT
• Trial of antiplatelet/anticoagulant medication (e.g. ASS or stronger agents depending on clinical evaluation)

He was very honest and said that a complete remission of symptoms was unlikely, though he was confident that he could improve my quality of life with these symptoms.

My Current Working Hypothesis

My current evidence-based interpretation is:

1. Objective pelvic venous reflux and pudendal varicosities are present.
2. These vascular abnormalities may create chronic congestion and pressure in the pelvis.
3. This may secondarily irritate the pudendal nerve and/or autonomic pelvic nerves and cause neuropathy.
4. The resulting neural sensitization and pelvic floor dysfunction may contribute to Hard Flaccid Syndrome and chronic pelvic pain.

My goal moving forward will be to get more clearance on the compression diagnoses. I will have another appointment with a european specialist in may turner syndrome and hope that his expertise can shed light on which route I should follow when it comes to embolisation, stents and/or laproscopy.

Important Disclaimer

I am not claiming that this is the universal cause of Hard Flaccid Syndrome, nor that these findings definitively explain all of my symptoms.

However, this is the first time in many years that objective structural abnormalities have been identified and closely correlated with symptom reproduction during invasive testing.

I am sharing this in case others with Hard Flaccid Syndrome, chronic pelvic pain, penile numbness, perineal spasms, or unexplained genital symptoms may have an overlooked vascular component that has not yet been investigated.

Help! Idk what to do.. please read all:

Today I went in for a consult on my Adenomyosis and Pelvic Congestion Syndrome. Due to having a grade 1 cystocele prolapse, she wants me to get a Uterine Artery Embolization first - she believes my symptoms could be because of the blood pooling in the veins outside my uterus. And that if I got a hysterectomy, it could shift my prolapse and make it worse.

I was hoping for the hysterectomy altogether and be done with this all. But she scared me enough I’m thinking of doing the Uterine Artery Embolization first… lol

INPUT/ADVICE PLEASE 🙃🙃🙃

I (25F) am scheduled for my intravascular ultrasound this Thursday and while I am under anesthesia, they will be stenting me if they find severe enough compression. Back in November 2025 I had several coils placed on both my left and right gonodal/ovarian veins for very severe pelvic veinous insuffiency/PCS. I’ve had so many surgeries that the recovery honestly wasn’t that bad and my IR doctor says I should expect very similar recovery as the coils. They weren’t able to rule out iliac vein compression during my embolization and can see at least partial compression on my CTs so I really won’t know any results until I wake up. I’ve felt pretty confident with my decision and I whole heartedly trust my Dr as I know she wouldn’t stent me if I didn’t need it or if she thought I couldn’t tolerate it. Still, I’ve seen the posts and videos where people have had a bad experience post stent (like pain 1 year later) and it has me feeling really anxious last minute. I’d love to hear from people who were already coiled for PCS prior to their stent because I’m wondering if that could play a role in recovery.
Also would love to know if there’s anything special that really helped with recovery. I already have heating pads, tens machines, pregnancy pillow, gas pills, pills incase of constipation, etc but would love to hear if there’s anything else out of the box that helped you.
Thank you so much!!!

(F)(26) It’s been such a long road for me since I got diagnosed with PCS/PVI back in December and I’m finally getting my embolization the first week of June. I was told I just got “unlucky” with my PCS because I have no kids nor have I ever been pregnant. I’ve had a venography done so I know a little bit of what to expect in terms of the procedure but I wanted to know how successful people’s embolizations were for those who went through with it? I’m in pain everyday and it wraps to my lower back. I’ve been taking ibuprofen daily because it’s the only way I can get some relief. I trust the doctor who will be operating on me since he’s the same one who did my venography. I’m just so worried that it won’t help but this is the best option I’ve been told by the team working on my case. I’m willing to go through what I need to for the pain to stop but could do with hearing some success stories. Any reply is kindly appreciated! 🤍

How long do you find a flare lasts? Maybe that’s a tough question to answer.

This all started for me very recently. I was having some symptoms, went boating on a day of rough waves and was bracing myself constantly on the boat while sitting. After that, my pain increased ten fold. I thought I had a UTI but nope. Kept getting bad burning in my pelvis, it was hard to start a urine stream and so on.

The intense pain started around three weeks ago and I’ve been really trying to simply rest the last 48 hours which is tough with kids. I will make my referral appointment with an IR tomorrow.

Hello, is there a place where you can look up interventional radiologists that have experience in Nutcracker syndrome, may thurner and pelvic congestive syndrome diagnosis. I have an appointment with one who has amazing Google reviews but I want to know if there is other research I can do. Thank you in advance! 🙏

Looking for recommendations on ultra thin, ultra light, non binding, no elastic panties. I have three pairs that I have been rotating for years now because I just cannot find anything like them. I go commando when I can. But need some new underwear for when I cant.

TIA

I have bilateral compressions and noticed rapid aging, broken capillaries around nose, large pores, cystic acne , dull/oily complexion, HRT not working like it did prior to vascular issues. Anyone else?

hi yall,

After what has been a long and needlessly arduous journey, I'm finally 3 days post treatment for MTS and PCS. My left iliac vein is stented, my left ovarian vein was embolized, and both ovarian veins received sclerotherapy. Christ on his throne I did not anticipate the pain to be this, uh, painful. I also started my period the night before the procedure, so the area is already pissed.

So for those of you who have experienced this, when does it let up? It seems laying down flat hurts my pelvic area the most. It feels like there's a constant "stitch" in my right pelvis, which was always my problem area aside from my left leg. Even breathing deep aggravates it, seemingly anything that activates lower abdominal muscles. Anything that bends my hips relieves it - to a degree, as long as my back is supported - but bending forward is a biscuit. The lower back pain and the pelvic pain feels kind of like labor and even reminiscent of the back labor I had 18 years ago. It kind of pinches and twitches, if that makes sense. Like a pelvic charley horse. But constant and it grabs me pretty good.

I figured 3 days out it would get less intense. How long did it take yall to feel back to "normal"? I wait tables and play music for a living so everything I do has a pretty physical element to it. I started taking ibuprofen instead of hydrocodone today so haven't had anything substantial for pain in ~36 hours. I'm trying to be mindful of rebound symptoms and as a sober alcoholic get weird about taking addictive substances. I think I may give in and take one.

On the upside, I noticed an improvement in my left leg pain almost immediately on waking up in recovery. So all that said, I can't decide if I'm a giant baby or if this really does hurt. And why does the right side hurt worse than the left?

Thanks for reading 🫶

I apologize in advance if this question has been asked before. I am painful and desperate.

I have MTS with an iliac stent placed two years ago for non-thrombotic MTS. My symptom that led to the diagnosis was a new, not pregnancy related vulvar varicosity.

GI symptoms for years-weight loss, IBS and IBD like with very unhelpful biopsies and scopes so I gave up on going to GI doctors. Right before MTS diagnosis GI was also much much worse. Super tight abdomen and pain after eating that was all relieved when the iliac stent was placed.

Fast forward two years and I am having all the same GI problems plus lots of pelvic pain. Went to an ER that is two hours away because they have a well regarded vascular surgery department and I was worried that my stent was occluded. They performed a CT venogram of abdomen and pelvis which was unremarkable but thankfully showed the iliac stent is patent.

Does the negative CT venogram rule out MALS or is it worth pursuing?

TIA

Hi. I am new to this and will try to keep brief. Long story but pelvic ultrasound showed prominent veins the other day and the radiologist wrote this is consistent with pelvic congestion syndrome. Yes-I have pain. I went back to see my GYN today with my husband to follow-up from my ER visit for this where I also had a CT scan done and bloods. Both clear.

My GYN gave me a referral to an interventional radiologist but really brushed off this could be my cause of pain and spotting issue since December.

Ok. Making this a longer story. I started spotting and went to check on it. I had a frond like growth high up in my vagina. Thank God tested benign. Continued spotting. Followed-up again Tuesday and yet again, ulcerated tissue in the same spot. Another biopsy. Again, thank God, benign and came back consistent with some type of friction likely rubbing there. My friends, I am no porn star, ha, so it’s not that.

I TRULY believe the compression is causing rubbing there and that’s why this is happening. It all seems to line up.

My doctor was just so meh about it all and is a male.

What do I do? I made a consult with an interventional radiologist today for June 2nd. Do vein doctors with experience work the same? Please guide me and thank you. 🙏🏻

Does anyone have experience with your MRI being negative but you had a venogram and they found something? I thought I was really on something by asking to see an IR for this. However, the MRI I had yesterday does not show anything that stands out. But it also does not show that I have active endometriosis. (I’ve had three laps in the last).

The IR was open to doing a venogram if I was and I am kind of desperate so I said sure but I’m nervous!

Hello all, I had left and right iliac vein stents, left renal vein stent and left and right pelvic vein embolization. may thurners, nutcracker, pelvic congestion sydrome. prior to scheduling the surgery i explained to my doctor that I have a huge trip planned which starts June 9th KY to FL. my home sells june 5th. so by June 5th I need to be feeling better. then June 18th begins a very big trip to Brasil. multiple airlines, luggage, buses. etc. He said I will be better in 2 weeks. My surgery was May 8th. Can you all share your experines with me so I can see the differences in how it has actually has effected different people? I am allergic to the pain medications so this has been absolute hell on me.... I can only take tylenol. worse pain of my life, this has been my 8th surgery.

21y Male. Sort of a long post here.

Hi there.

I was diagnosed with hypermobility spectrum disorder in December. Ever since I was around 15 I’ve had a varicose vein on my left medial calf that travels up to my lower inner thigh on my left leg.

For years I was confused on what could cause this as both my parents don’t have varicose veins on their legs. Then I found out about May Thurner Syndrome and thought I fit the symptoms and my hypermobility is a big risk factor from the research I’ve done. These r my symptoms I have if anyone can relate or give clarity it would be vastly appreciated.

- Left leg medial calf/lower medial thigh varicose vein
- leg heaviness (like I’m dragging a weight around sometimes)
- leg pain
- Penile tingling when doing i exercises where I seem to engage my pelvic muscles I think (tricep pull downs in the gym) (oddly specific I know)
- occasional bouts of pelvic area pain but nothing consistent or debilitating.
- now 6/7 years later I’ve developed a dilated mildly varicose vein on my right calf in the same area as my left.

The right leg calf vein developing now is what’s making me think I’ve maybe got it wrong as I was convinced it was illiac compression causing my symptoms.

I seen a EDS specialist geneticist in December (the one who said I have hsd) and she sent a letter to my gp saying it would be suitable for me to be referred regarding may thurner syndrome.

So my General practice referred me to the vascular department and my referral was denied which was gutting.

My mum came up with the idea last week to just go to the ER explain your symptoms and maybe they’ll give me a scan and if not at least it’s on my record that I went to hospital for this. They ended up not giving me a scan and the doctor told me “if I had MTS it would cause a DVT” which I know isn’t true and because my leg wasn’t red or swollen or anything they weren’t gonna scan me or investigate. This was annoying but expected tbh.

I’ve got a signed consent form from the geneticist for private genetic blood testing to check if I have any other more serious connective tissue disorders (she doesn’t think I do but I’ve been anxious about more serious ones like vEDS mainly due to the early onset varicose vein not having a known cause and being hypermobile)

However this is very expensive (£1200) so I’m going to do it in a few months time, but to be honest the stress and anxiety this vein problem is causing me because I don’t know what to do about it is very difficult.

I do feel like I do line up with May thurner syndrome with the left leg vein pain and heaviness but I’m genuinely not sure what to do anymore. I live in Scotland but to be honest I’m willing to go private anywhere in UK or at a very push Western Europe to get this matter investigated and treated properly.

Any advice would be greatly appreciated as I’m at a loss now and my anxiety and stuff over this is just getting worse.

Hi everyone. For years, I’ve had severe left-sided leg pain along with IC symptoms and phantom UTIs. Two years ago, laparoscopy confirmed stage 1 endometriosis, but my pain persisted and worsened shortly after the birth of my son. I gave birth to my son 9 months ago, complicated by third-trimester high blood pressure and preeclampsia (could this be connected to vascular issues?). A recent ultrasound showed left iliac vein compression, suggesting May-Thurner syndrome.

What are the recommended next steps? Is a CT scan absolutely necessary to confirm this ultrasound finding, or are there alternatives? I really want to avoid unnecessary radiation. I also hope to conceive again within the next 6 months—should I delay treatment until after having children?

I’ve recently been diagnosed with May Thurner’s syndrome. I met with the IR and we scheduled a venogram for a few weeks out.
I got the diagnosis after being referred to a vein specialist where they did a two hour long ultrasound from my shins to my rib cage 🫠 I’m told that the veins in my legs look good and I don’t have any varicose veins around my uterus. I don’t really have any swelling but I have had swollen feet before. It’s just not something that happens to me often. What I’m really struggling with is lower back pain, leg pain, hip pain, and pelvic pain (this one has since subsided but it was pretty bad when I started this journey for an answer)
Not sure what I’m asking for here, but I guess I need advice? I’ve been in pain everyday for 3 months. I elevate my legs, I wear compression socks, I use a heating pad, I take ibuprofen and Tylenol as needed. I’m tired of hurting. The venogram is scheduled for their earliest available time. My pcp doesn’t have any appointments until the end of the month but I scheduled with another doctor in the same practice for late next week. I sent my pcp a message and hoping he’ll get back to me Monday with some options? I don’t really even know what I’m asking for, I just want to stop hurting.
I have an active 2 year old and I’m a stay at home parent. This is making it so hard to keep up with her.

Any tips or just any one that relates to this?

Background: about 6 months ago I woke up in the middle of the night, peed, and then tried to go back to bed. But then the worst cramps of my life came on and had to take muscle relaxers for it to go away. Happened again the next night. This was right at the tail end of my period. Didn’t happen again until my next cycle. The next cycle, happened again except the pain was in my left side, throbbing into my back and leg. Trip to the ER and many scans and doctors visits later got diagnosed with PCS. My IR scheduled an ovarian vein embolization. The month leading to it I had the same excruciating pain happen usually at night for 2-3 nights in a row after my period.

Post-OVE: I had my embolization 15 days ago. The first 7 days I had minimal discomfort, but then my period hit. For the last 8 days I have been uncomfortable around the clock, hitting a peak at least once a day with cramping of some sort and throbbing pain into my left side. My new symptoms is that my bladder burns and so does my urethra. I went to urgent care but tested negative for an infection. I called my IR, who via his nurse said that since I didn’t feel pain right after the procedure that it’s not from the procedure and to go see my gynecologist. I saw my gyno and they were quite confused why the IR wouldn’t try to help me. The gyno couldn’t do anything except prescribe me Rx strength Azo, which gave me the worst headache and nausea.

I’m now worried that this is my life now. Always feeling pain, having what’s seemingly cystitis, and no one will help me.

Is there a light at the end of the tunnel?