Health Organization for Pudendal Education

Hi. I need your guys’ help in making an urgent decision tonight regarding an MRI and MRN.

Symptoms: severe lower back pain and stiffness left side, pelvic floor dysfunction, severe muscle and nerve pain along pudendal pathway including allodynia (mostly left sided but recently spread to the right side as well), sensation of weight in my vagina when standing, feeling like someone is pulling on my hairs on the vulva or pinching the skin around the perineum, vulvodynia and vestibulodynia (left sided), coccydynia (both sides), bladder frequency and urgency, urethral burning, severe chronic constipation, anal and urethral spasms.

Unable to sit for any amount of time and can stand only a couple of minutes at a time = 99% bed ridden

Recently lost job and living off of savings but worried sick what will happen after savings finish, as no family/friends in the country. Basically immense pressure to get better ASAP.

Been offered an MRI and an MRN for free.

Problem: I also suffer from Tinnitus reactive to loud noises. Last Tinnitus spike I could barely sleep for a couple of hours per night for 3 months!! (Some nights I got almost no sleep, and almost got admitted to hospital).
Since the Pudendal Nerve symptoms got worse in the past 1-2 years, even if I get 20 minutes less sleep per night, my PN pain next day is 9/10. I need sleep to get my PN pain to the usual 7/10 it usually is.
It’s almost sure that if I go to get the MRI and MRN my Tinnitus will spike (made a test trial yesterday where I listened to some MRI noises, through my phone, for 1 minute with ear plugs and headphones) and now it’s much louder today, barely slept last night!!

What do I do?
Realistically are the MRI and MRN worth it? (I had a few MRIs 12 years ago, when some of these symptoms first started, and again 6-7 years ago, which were normal, but haven’t had one recently since the symptoms got worse 1-2 years ago and since it’s more clear that my problem is mostly back and PN pain. I also haven’t had an MRN).

What are the realistic chances something will come up on the MRN that can then be pursued and treated?

Up until a year or two ago, I was managing my symptoms well with manual therapy and even got better at one point but after a series of events that included over exercising, overstretching the pudendal nerve, covid and then my osteo dying and seeing a new chiro who overstretched my hamstrings and piriformis, I have been getting worse and worse.

Any help much appreciated

Hi Gala,

That's a really tough decision. I can't say for sure what's the right thing to do but realistically, you can have a nerve entrapment and it won't show up on the MRI. And some people who have a very abnormal MRI of the back have very few symptoms, while some people who have severe symptoms have an unremarkable MRI. So it's not a guarantee the MRI will provide any significant information. However, there are some cases where it does provide valuable info so it's not a 100% one way or the other decision.

When it comes to pudendal nerve entrapment (PNE), there are other ways to diagnose it than with an MRI. In fact, some of the PN doctors don't put much stock in the MRI for confirming a PNE diagnosis. One possible reason for doing an MRI is to rule out something obvious like a tumor that is causing the problem. So it kind of comes down to weighing the risk vs. the benefit. One question to ask is whether the results of the MRI are likely to change your treatment plan. If it's not likely to affect your current treatment plan, then maybe it's not necessary. If you really want to have the MRI though, you could request some kind of sedation for the procedure and maybe that would help.

Since you are unable to work, have you checked into whether you would qualify for disability? https://www.ssa.gov/benefits/disability/qualify.html

Wishing you the best with your decision.

Violet

Thanks so much for your advice, Violet.

Does your advice apply also for the MRN or just for the MRI?

My referral is for 2 MRIs (lumbar spine and pelvis) and MRN (doesn’t specify which area, I would assume PN?!). I was initially thinking of trying to do just the MRN but after having this tinnitus spike for the past couple of days just from listening to scanner sounds on the phone I am terrified and no longer know what to do.

In terms of treatment, I am not sure how having the scan would change things. What are the most common things that people see on the scans that they can then act upon?
From reading around here I see it can be: entrapment (scar tissue), swollen veins, or tarlov cysts. So I assume it could go either way with needing physio (already go to weekly physio, not a lot of improvement), or surgery (not sure I can afford to wait for it as my savings won’t last me that long).

Is there anything that could come up in the MRN that could be treated with injections (nerve blocks or botox? I have both a fluoro nerve block and blind botox lined up in the next 2 months anyway, just not sure if having the scan beforehand would help these procedures? Although I might not even get the results in time tbh) or that would make my physio adjust her techniques or the areas she’s working on?

Honestly, weighing the potential benefits of the scans against the almost guaranteed tinnitus flare-up... it's a tough call. If the scans could reveal something treatable, it might be worth it, but if they're likely to just confirm what you already suspect, the risk to your sleep (and therefore your pain levels) might outweigh the reward.

Maybe try finding a doctor who specializes in pudendal neuralgia. They might have other diagnostic options that are less noisy. Good luck, seriously.

I don't think the noise on the MRN would be any different than the MRI but I could be wrong. Good question to ask the radiologist. My understanding is that the software settings are different but I don't see how that would affect the noise.

An MRI or MRN might show a nerve entrapment if you have one (especially the MRN) but they don't always show them. It would have to be a pelvic MRI/MRN though. Obvious things like tumors would show up but it's pretty unusual to have that as a cause of pudendal neuralgia without having a lot of other symptoms. I'm not sure I've ever heard of it actually. If it's an MRI of the spine they could be looking for a tumor or tarlov cyst there.

I'm not sure if the treatment would change cause I don't know what type of MRI/MRN you would be having -- a pelvic or a lumbar spine, or lumbosacral plexus. Obviously if they found a tumor the treatment would change.

Violet