Health Organization for Pudendal Education

I finally have the MRI order submitted to Dr Potter's office. I hope to have it done in September. My doctor wrote the order as "MRI of Pelvis without contrast."
Is that sufficient?

I suffer from left side PGAD and left side pelvic, perineum, and buttock/sacrum pain.

I have already had the MRI of lumbar and sacrum to coccyx earlier this year.

Great news, Mari. So you are getting the MRI done in Potter's office in NY and you want to to follow the Potter protocol for pn and be read by Potter. I think my MRI orders (for pn and other things) have always indicated what the symptoms are and/or the doctor's hypothesis about the diagnosis, so your order doesn't (to me) seem like it will necessarily lead Potter's tech team to use that specialized protocol. So, I would definitely call Potter's office and see if that is what they are planning to do. If it's not, I would ask Potter's office what the order needs to say to get that and then I'd call the ordering doctor and give them that info. Let us know how it goes.

April

Thanks April! I will call tomorrow. Do you think that it needs to be done with contrast?

Hi Mari,

No problem! I don't know enough about this to know that, but the Potter protocol will have all that info, so I think the ordering doctor can just request the protocol without adding any other info.

April

I did not have it with contrast. I saw Dr. Potter after they did mine, but this was years ago when she would actually sit down and talk to the patient. She showed me exactly where it was entrapped and said the only thing I could get was nerve blocks, which I got and never did help me at all. This MRI was done after the first decompression surgery, which caused me to become re-entrapped.
I brought the MRI disc back to a local radiologist and he had no clue what he was looking at!

OP here. I finally got the MRI.
My doctor rewrote the order as:
"3T MRI of pelvis with and without contrast. Attention pudendal nerve. To be reviewed by Dr Hollis Potter. Indication: Chronic pelvic pain and PGAD."

I'm not sure that the contrast was necessary, but we figured after all this time and flying halfway across the country, might as well cover all bases. Luckily it was in-network with my insurance. I had a small copay.

I completed the online check-in the day before the appointment. It asked to list previous pelvic surgeries (related and/or unrelated to your current pain) and other treatments I've had, including nerve blocks, trigger point injections, etc, and to go into a bit more detail about my symptoms. There was a detailed questionnaire about the location of the symptoms specific to the pelvic area/lower back. I mention all this because it took a bit longer to complete than the standard pre check-in, so I'm glad I didn't wait til the morning of the appointment! Pretty much everything that I reported about my history in the pre check-in was mentioned on the radiologist report.
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One other thing is that when I was finally in the MRI room and I meet the technician who is doing the scan, I asked the technician to verify that Dr Potter would be looking at the images and writing the report, and the tech says no, that some other radiologist Dr _____ will be doing that.
Y'ALL can imagine........I''m like WWWWWHHHHAAAATTTTTT
The technician then re-read the papers in hand and saw what my doctor ordered and said that they would call Dr Potter. So as far I know Dr Potter did do my report because her name is on it. I sure hope so, because with all the logistics and hoops of getting the correct order for the correct MRI with the correct radiologist in a very far away expensive city that I've never been to before..... then finding out that Dr Potter is not doing my POTTER MRI. NO WAY So all you folks planning to make this same journey, check and recheck every step of the way that this lady knows you are coming and is actually going to be there!!!
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Ok now that THAT is out of the way.....

The radiologist report was available for me to read via the hospital's online patient portal by that afternoon.


Impressions: MRI of the pelvis demonstrates no scar encasement of the pudendal nerves throughout the field-of-view, but there are varices within the pelvic floor coursing at the anteroinferior margin of Alcock's canal, surrounding the vagina, and extending around the bulbospongiosus and ischial cavernosus muscles. The findings could be implicated in mild pelvic venous congestion syndrome.

In the FINDINGS section she describes these varices as "small."

Could these small varices/mild pelvic congestion syndrome cause the symptoms I've experienced for the past 15 years? I have no idea. Apparently they are a fairly common finding on Potter's MRI.
From the bit of research I've done here on the forum since receiving the report, the treatment, embolization of the affected veins, does not produce good results in relieving pain and other symptoms, according to members posting here about their own experiences with pelvic embolization. Even when the varices are larger than mine.
So I don't know that I would go down that road...

Hi Mari,

It must be hard to know whether to be happy that the MRI didn't show something more major, or unhappy that it didn't show something more definitive that you could seek treatment for.

MRI's aren't 100% accurate at diagnosis though. I noticed in your signature that your pudendal nerve blocks failed. Does that mean you didn't have any relief at all, even for a few hours?

Violet

Thank you for the response Violet. I most definitely hoped for a definitive treatable result on the MRI but had prepared myself for this outcome.

I had 2 pudendal nerve blocks earlier this year. The first one was unguided transvaginal at the ischial spine. It numbed me up pretty good below the waist for several hours but I could still feel the PGAD. Several months later I had a guided pudendal block through the glute and also genitofemoral and ilioinguinal nerve blocks, and I didn't feel any numbing at all from any of these. I was flaring badly at the time so I would've noticed had there been any pain relief.

Hi Mari,

The nerve blocks are kind of inconclusive since the image guided nerve block didn't cause any loss of sensation in the area innervated by the pudendal nerve -- even for a few hours, right? It sounds like they missed the target of the pudendal nerve if you had no numbness at all.

Regarding the unguided block, it sounds like you had some loss of sensation in the area innervated by the pudendal nerve but no relief from PGAD, right? I only had partial relief from PGAD when I had my pudendal nerve blocks, but the blocks did take away most of the pain temporarily. So, I'm not really sure what to conclude from your nerve blocks. What did the doctors think?

I see that you had the Potter pelvic MRI, but have you had a lumbosacral MRI and lumbosacral plexus MRI to rule out something higher up than the peripheral pudendal nerve?

Violet

Hi VIolet

The nerve blocks are kind of inconclusive since the image guided nerve block didn't cause any loss of sensation in the area innervated by the pudendal nerve -- even for a few hours, right? It sounds like they missed the target of the pudendal nerve if you had no numbness at all.

Yes that's what I thought at the time, that the guided blocks I had (pudendal, ilioinguinal, genitfemoral) maybe didn't hit the mark. I had all three done on the same day and nothing, no numbing.

What did the doctors think?

I've gotten very little feedback from any of the doctors I have seen.

... have you had a lumbosacral MRI and lumbosacral plexus MRI to rule out something higher up than the peripheral pudendal nerve?

Earlier this year I had MRIs of lumbar and sacrum to coccyx. I sent the images to Dr Irwin Goldstein and Dr Choll Kim to review. My sacrum looks fine. Lumbar has mild or moderate disc bulges at most levels. Dr Kim suspects an annular tear at L5-S1 but the radiologist report doesn't say that specifically so I don't know what to think. Goldstein and Kim want me to go to California for nerve testing, nerve blocks, etc.