Stenting/May-Thurner Syndrome

[winged_cent]

Hello everyone,

I wanted to see if there is anyone on the forum that has experience with varicose veins within the pelvis potentially contributing to their pudendal nerve symptoms.

About a year ago, I had a 3T MRI conducted at the Hospital for Special Surgery in New York- supposedly the best of the best. It showed no scar tissue or other anatomical abnormalities, except that it shows "very prominent" varices around the pelvic floor, extending into Alcock's Canal, more on the left side than in the right. This corresponds with my symptoms, which are largely left sided in the distribution of the perineal and dorsal nerves.

Most recently, I had an MR Venogram to explore these veins more closely. The venogram showed that I have May Thurner Syndrome- which occurs when the left iliac vein is compressed by the right iliac artery. All in all, it showed an 87 percent reduction in the size of the left iliac vein, and dilated collateral veins branching off into the pelvis. The venogram was not able to specifically confirm whether the pelvic veins followed the pudendal nerve or not.

The doctor who conducted the venogram has offered to place a stent into my left iliac vein to keep it open. The theory is that, once the blood flow is normalized, the dilated pelvic veins will reduce in size, and therefore, potentially, stop impinging the pudendal nerve.

The short and medium term results for stenting are pretty good, but there are no long term (20/30 year studies) because the procedure has not been around that long. So while the procedure itself is minimally invasive, I am wary of introducing a permanent foreign body into my vein, since there is no telling what kind of effects it might have decades down the road.

Dr. Richard in Baltimore recommends doing it, and Dr. Aszmann, who I saw last year, also says that it is a less invasive alternative to surgery. I am just wondering if anyone has any experience with this to see if it might be worthwhile.

[Bolex]

My past medical history

Testicular torsion 1985
Circumscission 1991
Testicular benign cyst 1992
Familial hypercholesterolaemia diagnosis 2010
Raynaud's disease 2010
Cyst hoffa fat pad right knee
Bilateral plantar fascititus 2016
Chronic anal fissure 2016
Acetabular cyst on left hip 2016
Right calcaneal heel nerve pain December 2018

Medication
Atorvastatin 40mg note
Lactulose 10ml bd

Two months ago I had been cycling for an hour one evening uneventfully .When I finished my ride and dismounted I noticed that I could not feel my penis and had a sharp buzzing type sensation from the penis . The following week I attempted to cycle again and after 30 minutes was experiencing severe penis pain with the urge to urinate. I had been wearing an athletic sports suport due to slight testical pain I had been experiencing in preceding few weeks which may itself have been caused by my cycle bib trousers rubbing on the testis ? . The pain from the penis I found eventually would continue even off the bike and I would describe it as crushing and achy predominantly from the penis . Unusually I then after a further week began to experience some strange tingly sensations from the genitalia which I can only describe as arousal like which caused me great distress! .After searching online I came across a condition called persistent sexual genital arousal which although affected females in the literature I was myself was experiencing similar symptoms which caused me great distress! .I also began to experience slight discomfort from my coccyx and pubic bone. My general practitioner diagnosed prostatitis another doctor linked the calcaneal heel nerve pain I had had four weeks prior to this with the penis symptoms I was having.It is worth noting that the symptoms last when sitting and standing although I think sitting slightly aggregates the arousal symptoms and stress makes the arousal symptoms increase enormously . I also believe bending over for a length of time causes the penis pain to aggregate hours or following day . I have no discomfort upon urination or discharge and can achieve erection though ejaculation sensation seems altered( duller) . It is worth mentioning at this point that I have had an anal fissure for three years causing daily bleeding and spasms for which I have had a recent Botox under general anaesthetic .The bleeding ceased for just a few weeks but has now began to bleed again as well as the spasms , passing stools remains painful .I spoke to the consultant colerectal surgeon and questioned the possibility of the anal spasms from the fissure causing trauma to the pudential nerves as well as cycling being a contributing factor.He disagreed and felt the culprit could be a spinal nerve compression and is now arranging an MRI. I have been cycling for two years and increased to a total of 3 hours a week in the last eight months only .My saddle had a cutout and a bike fit with pressure mapping showed no unusual pressure being applied to the perineum area .Interestingly I have lost a stone in weight three months leading up to the event as a result of a change in diet my current weight is 10 stone .The only thing out of the ordinary leading up to the event that I noticed in the preceding months apart from the testis pain, calcaneal nerve pain was very very slight discomfort post urination on occasion .My urine dipstick which I did myself was normal.I have also had a sigmoidoscopy which was normal but no urological testing. It has been suggested to me to try a recumbant bicycle which are quite rare in the UK where the rider sits in a reclined position on a normal type seat and pedals with feet slightly in the air .However I am frightened this may aggregate things as I even tried some light swimming and it flared up my symptoms the next day so I will not attempt any exercise . Sorry for the length of this description .I am very anxious as these symptoms especially the arousal are deeply concerning and have tested my own sanity . I have so far only been offered accupuncture which made me feel relaxed for a few hours only .My phsio is at a total loss unfortunately and is writing to our local women's pelvic pain team for advice. My main concern is are my symptoms as a result of possible pudential neuralgia and can an anal fissure spasms lead to injury of the nerves?? Many thanks

In summary my presenting symptoms are

Intermittent crushing, ache from penis
Arousal type symptoms when above pain not present worsened with stress
Slight coccyx pain
Very slight discomfort when perineum pressed
Query discomfort tightening sensation from pubic bone at times
Ongoing chronic spasms and discomfort from anal

[winged_cent]

Hi everyone,

I went ahead and had my iliac vein stented today, after consulting with several interventional radiologists and vascular surgeons. While having a permanent implant is somewhat scary, they all said that the rates of problems for people without a history of DVT are extremely low, and my iliac vein was compressed and had lost about 90 percent of its area.

We'll see if this has some effect! If all goes well, in a couple weeks the dilation of the pelvic collaterals should decrease and the internal varices should disappear. If it improves the pudendal symptoms it will be a godsend, as it is a straightforward and minimally invasive procedure.

[Bolex]

I have reticular veins right leg and a varicose on testis , how are u getting on ?

[winged_cent]

No ill effects from the stenting, but so far no effect, positive or negative, on the pudendal nerve. I think that, at any rate, it would take some time for the varicose veins to stop being dilated, and then after that possibly some more time for nerve symptoms to decrease. Too early to tell so far.

[dim34]

No ill effects from the stenting, but so far no effect, positive or negative, on the pudendal nerve. I think that, at any rate, it would take some time for the varicose veins to stop being dilated, and then after that possibly some more time for nerve symptoms to decrease. Too early to tell so far.

How are you feeling now? I also have this diagnosis

[winged_cent]

Same, unfortunately. No ill effects of the stent, but no improvement on the PN symptoms. I am potentially going to get another MRI to see if the stenting got rid of the varices. If it did, that means that the varices were not the cause of the problem and were an incidental finding.

[Pleasehelpmegod]

I'm interested in this. Have you noticed a increase in sexual function and libido? Has it fixed any pain?

[Pleasehelpmegod]

hi did the stent work?

[Pleasehelpmegod]

I wonder if you got the right compression did the vascular surgeon say if you have nut crackers or not? I honestly do believe pn is just a symptom of a vascular condition.