Potter MRI

[Violet M]

Hi Mari,

That's really tough when you don't have definite answers. Seems like the doctors owe you some feedback, even if it's to say they don't know exactly what's going on. Do you know if they checked for tarlov cysts on the lumbosacral MRI? Radiologists don't always report tarlov cysts, but they are a potential cause of PGAD. I would expect Dr. Kim and Goldstein to know to look for them though. If they saw your MRI maybe you could ask them about tarlov cysts specifically. https://pubmed.ncbi.nlm.nih.gov/22594432/ I wonder if maybe it's possible the radiologist who read the report didn't report or notice an annular tear.

Violet

[29Mari]

Hi Violet,
Oh I agree with you. Actually I did not really have any appointments with my doctors regarding the results of the MRI until just this week.
Now, having seen the Potter MRI report, my pelvic floor therapist really wants me to follow up on the pelvic varices issue, as these veins are located exactly where the pain stems from in my vulva and are easily visible through my skin.

So today my PT consulted with Dr Tracey Sher (aka the Pelvic Guru), who recommends I get in touch with Dr Brooke Spencer, an interventional radiologist in Colorado who specializes in pelvic congestion syndrome and is familiar with PGAD. So possibly I will start with a virtual appointment with Dr Spencer and hopefully she can take a look at my Potter MRI...

I am feeling somewhat hopeful that this is the correct next step. Will keep y'all posted.

ETA: Violet, regarding Tarlov cysts, Dr Goldstein and the radiologist(s) said none were found on my lumbosacral MRIs.

[Violet M]

Hi Mari,

That sounds like good reason for hope - that someone will figure this out for you and help you to get some relief!

Sending hugs,

Violet

[29Mari]

Eerily similar to my situation...

CASE REPORT: Pelvic Congestion Syndrome Presenting as Persistent Genital Arousal: A Case Report
Catherine Thorne MBBS *
Bronwyn Stuckey FRACP *
https://www.sciencedirect.com/science/a ... 9515319366

[Violet M]

That's interesting they suggested that the nitroglycerin the patient used for the anal fissure may have caused the varicose veins.

I hope this pelvic congestion idea turns out to be a successful lead for you.

Violet

[29Mari]

That's interesting they suggested that the nitroglycerin the patient used for the anal fissure may have caused the varicose veins.

I hope this pelvic congestion idea turns out to be a successful lead for you.

Violet

Yeah that part is not similar!

[29Mari]

Hi Violet, and anyone else who may be following my case here regarding the varicosities/possible pelvic congestion seen on my recent Potter MRI: I had an interventional radiologist review my Potter MRI as well as last year's lumbar, sacrum, and abdominal MRIs, but all the images were too low/didn't show the areas where abdominal vascular compressions like May-Thurner Syndrome and Nutcracker Syndrome would be. So I will have a diagnostic venogram in the next week or two and see where things go from there. No stents or embolizations for now, just the diagnostic venogram.
Will post results when I get them...

[Violet M]

Hi Mari,

Sure hope it goes well for you and gives some valuable info. You have been battling this too long already!

Violet

[29Mari]

My recent MRV (noninvasive), with and without contrast, of the pelvic and abdominal area showed mild varicosities and a mild compression of the left iliac vein. That's the vein that would be involved in May-Thurner Syndrome (MTS). During my Telehealth appointment to review the results, the NP said the doctor would need to see me in person to perform an invasive venogram, at which time she would insert a stent if the compression is bad enough. They would also do a perineal ultrasound.
If the iliac vein is stented at that appointment, I would have to return some months later to embolize the varicosities in my vulva and wherever else they find them in my ab/pelvis. If the iliac is not compressed enough to require a stent, then they will treat the varicosities right then.

Of course, because of PGAD, I'm most interested in what the heck is going on with my pudendal vein (is it enlarged. pressing on the PN??) and left vulva, where my most severe pain is and I have visible veins! But the MRV didn't view the perinuem, so this apparently specilaized perineal ultrasound that they offer in Colorado would give the most detail of that area to date. I've never had one because my many doctors say they don't know any radiologist in Texas who offers one specialized for this and/or knows how to read it. Granted, I have not looked very hard to find someone in Texas and I probably should....but I have research fatigue and medical travel fatigue. Even most of my doctors in Texas are at least 5 hours away.

The place in Colorado, Minimally Invasive Procedure Specialist (MIPS), and their Interventional Radiologist Dr Brooke Spencer, has become a magnet for treating patients suffering from pelvic pain related to MTS, pelvic congestion, pelvic varicosities. Lots of women travel there for treatment. Obviously it would be yet another big trip, and because their diagnostic venogram is invasive, and probably covered only once by insurance, they do the diagnostics and the stent (if necessary) at the same time. I haven''t asked if we can do the perineal US only, and I haven't had any time with the actual doctor to hear from her directly about their results, if any, in relieving PGAD symptoms. I didn't get any feedback on that from the NP. I need to ask if the doctor will do a Telehealth with me or answer some questions by email before I make a final decision about Colorado. I'm like most of us here, have suffered so badly, for so long, that I don't have much reserve left for doing anything that might make me feel worse, even in the relative short term. And I have read plenty of stories online of women getting new and worse pains after having stents placed for pelvic pain, with improvement taking some months. Not sure that any of these were patients of MIPS. I unjoined the private pelvic congestion syndrome Facebook groups because it's just too distressing.

My pain management doctor suggested a superior hypogastric nerve block. I haven't agreed to it yet, need to do more research, and she's 5 hours away...

My daily baseline pain is about the same but I haven't had any really major pain/PGAD flares in about 6 weeks nor any of the horrid PGAD flares that wake me in the mid of night. I usually have 3-4 bad flares a month lasting 3-5 days each. I don't know if it's coincidence, but I started an oral supplement Venixxa (generic: diosmin and hesperidin), supposed to support vein health, recommended for varicose veins, hemorrhoids, etc. Maybe it is helping?? I told the NP about it, she acted like she had never heard of it, but I read online of Interventional Radiologists recommending it.
From AI:
Venixxa is a natural health product containing 500 mg of Micronized Purified Flavonoid Fraction (MPFF) per tablet, derived from immature oranges. This active ingredient consists of 90% diosmin and 10% other flavonoids (expressed as hesperidin), specifically designed to relieve symptoms of chronic venous disease and hemorrhoids.
Key Ingredient Details:
Active Ingredient: 500 mg MPFF (Citrus bioflavonoids).
Composition: 90% Diosmin and 10% Flavonoids (expressed as hesperidin).
Source: Extracted from immature oranges, which are dried, ground, and purified.
Technology: Micronized to reduce particle size for better absorption.
Product Purpose: Venixxa is used to reduce leg pain, swelling, heaviness, and symptoms related to hemorrhoids (such as bleeding and discomfort) by improving vein health and tonus.

[Violet M]

Hi Mari,

Sounds like you have done a lot of good research but I understand how daunting it can be to travel a lot for medical treatments, especially when you aren't sure if they are going to help you.

This article by Dr. Possover states that vascular decompression of the nerve can be done with the laparoscopic approach to pudendal nerve release surgery.

"For vascular entrapment of pelvic nerves (n=6), all patients had complete relief." https://www.pudendalhope.info/wp-conten ... urgery.pdf

It sounds reasonable to try the minimally invasive procedure by Dr. Spencer in Colorado and if that doesn't work you could then opt for a laparoscopic pudendal nerve decompression that could release the nerve from vascular entrapment or whatever other entrapments that are found including entrapment by the ligaments. Or, you could continue with the natural supplement to see if you will have anymore improvement from that.

I know these are tough decisions to make and weighing the risk vs the benefit is always an agonizing decision.

Sending you hugs and prayers.

Violet