MRI Results: Confused

[Farce6537]

Hi everyone,

I’ve been dealing with PN for 3 years but over the course of the last year I’ve gotten worse. I now have constant itching and burning in the rectum and cannot without a pillow underneath because of the discomfort. I got an MRI to rule out any possible entrapment. The results were basically the following:

INDICATION: Pudendal neuralgia, looking for potential nerve entrapment along its path.

TECHNIQUE: Multiplanar multisequence MRI of the lumbosacral plexus after administration of 5 cc of intravenous contrast.

FINDINGS:
Lumbosacral plexus: Normal course, morphology, and signal intensity of the lateral femoral cutaneous nerve, pudendal nerve,
obturator nerve, and posterior cutaneous nerve bilaterally.
Femoral nerves: Intact.
Sciatic nerves: Intact.

Muscles / Tendons:
Iliopsoas: Normal muscle signal. Unremarkable tendon.
Piriformis: Normal muscle signal.
Gluteal muscles:Normal muscle signal. Unremarkable gluteus medius and minimus tendons.
Hamstring tendon:Normal signal. Unremarkable hamstring tendons.

Joints:
Sacroiliac joints: Normal right sacroiliac joint. Mild edema along the left inferior margin of the sacroiliac joint laterally.
Pubic symphysis: Intact.
Hip joints: No hip effusion.

Bones: Normal marrow signal.
Vessels: Normal flow voids.
Abdomen / pelvis: No significant abnormality in the visualized posterior abdomen and pelvis.

OTHER: Susceptibility artifact from battery pack with leads extending through the left sacral neuroforamina and into the left
presacral space. Pelvic floor is low-lying; directed clinical assessment suggested for rectocele.


IMPRESSION:

1.\X09\Unremarkable lumbosacral plexus MRI without evidence of pudendal nerve entrapment.
2.\X09\Mild edema and enhancement of the left inferior lateral sacroiliac joint cord with mild sacroiliac anteriorly.


The MRI showed no PN just inflammation of my left SI joint and suggestion for Rectocele. Could these really be causing this pain and discomfort? Is there a chance the MRI is wrong ? I’m just confused and shocked because my symptoms scream entrapment to me. I feel very frustrated. In a way, I’m kind of disappointed I don’t have entrapment? Because maybe that way I can get surgery and an actual treatment cure? I know what this MRI shows is information that could be helpful but I’m not sure how to this info will help me. I’ve tried nerve blocks last year in June and September (before I got worse) and Botox in 2024. Not sure what more I could do.

[April]

Hi Farce,

I am sorry your MRI didn't provide any clear answers. That is frustrating, but it is very common. In fact, I think most MRIs of people with pne don't show anything indicating pne. Dr. Hibner---at least years ago when I saw him---said he doesn't even recommend getting one because there are so many false negatives. Many times doctors do recommend them, though, if there is a need to rule out other problems. I have read people reporting on here that they have SI joint problems, so there may be a connection between that and pn, but my sense is that the problems here (some edema in the joints) would not be the cause of pn pain. Violet is the medical expert, though, so she may have better feedback on that issue. But your MRI results do not rule out surgery. You should still be eligible for it if your history and symptoms suggest you have pne. Have you met with a pne surgeon yet?

April

[Farce6537]

I have met with DR.Marvel. He is based in Maryland. He has not recommended surgery for me because he says it could lead to scarring of the tissue. All he has told me is that I need to be less constipated and drink more water and eat more fiber. Not very helpful lol but I plan to branch out and find someone else. I’m also getting ganglion blocks next month and hoping for some relief.

[eraser]

I have met with DR.Marvel. He is based in Maryland. He has not recommended surgery for me because he says it could lead to scarring of the tissue. All he has told me is that I need to be less constipated and drink more water and eat more fiber. Not very helpful lol but I plan to branch out and find someone else. I’m also getting ganglion blocks next month and hoping for some relief.

I am sorry to hear that you have fobbed off with useless advice. What about considering nerve conduction studies?
Do you meet the Nance criteria for entrapment?

I have been told that the nerve conduction studies that France, Nance, are leas extensive to what UCLH offer in the UK.
As April has pointed out, most of the time of the MRI's are useless for identifying entrapment as the nerve is simply too small and the MRI resolution is inadequate.

Did you have a 3T MRI, I presume?

I am having nerve conduction studies myself soon.

[Violet M]

Farce6537, I'm not a medical expert as April said, LOL, but I will just mention some of the things I have learned through experience, online research, PNE doctors, and the many wonderful people who come on this forum.

Please remind me what your immediate response to the pudendal nerve blocks was -- did you have any short term (several hours) of partial or significant improvement? Did you experience a temporary loss of sensation/numbness in the area innervated by the pudendal nerve confirming that the nerve block was delivered correctly to the pudenda nerve? If the nerve block was delivered correctly to the nerve but you had no temporary pain relief that would indicate that you might possibly not be a good candidate for pudendal nerve decompression surgery, according to the Nantes Criteria. However......since your pain seems to be primarily rectal, you need to know that the inferior rectal nerve can have different anatomical structure in some people. Sometimes it comes off the main trunk of the pudendal nerve above the ischial spine, so the traditional pudendal nerve block at the ischial spine might not provide any pain relief, nor would a pudendal nerve block in Alcock's canal because those could miss the inferior rectal nerve branch of the pudendal nerve. If your pain is strictly rectal, you might want to consider that possibility. If that's the case you might want to search for a surgeon who can deal with the inferior rectal nerve. To be honest, I am not sure which of the well-known PNE surgeons do. It is a complicated branch of the nerve to deal with. But, if you had temporary relief from the traditional nerve blocks and you have more widespread symptoms than just the rectal area, then you may want to get a second opinion about whether traditional PNE surgery might be helpful.

Regarding SI joint dysfunction and the rectocele, those could both be significant because they could indicate that you have some ligament laxness that wouldn't necessarily show up on an MRI, especially when you are lying down. Have you been evaluated by a knowledgeable PT for pelvic instability that could indicate lax ligaments? Lax ligaments could cause pressure on the pudendal nerve. That's what happened in my case and I had pelvic instability. Nothing showed up on the MRI though. I would ask your urogynecologist and a PNE surgeon if the rectocele could possibly be stretching the inferior rectal nerve or if lax ligaments could be pressing on the nerve. You also want to consider that the ligaments could be hardened and sclerosed which could be even more irritating to the nerve. I had some prolotherapy injections into my SI joint/ligaments that were helpful but you wouldn't want to do too many to avoid scar tissue and you want to be aware of any risks involved.

Ganglion impar blocks help some people with rectal or coccyx pain. I remember one woman who had a successful ganglion impar block and then proceeded to have a phenol ganglion impar block which gave her more long-term relief of rectal pain. None of these procedures are without some risk; however, so you would want to ask what the risks are going in, keeping in mind that it may not be a permanent fix. Here is a case report of that type of block: https://pmc.ncbi.nlm.nih.gov/articles/PMC6159014/

I'm sorry you are dealing with this issue. Have you tried using any capsaicin products for temporary relief? https://pmc.ncbi.nlm.nih.gov/articles/PMC1773800/ You could ask your doctor if it would be safe for you to try it.

Wishing you the best,

Violet

[Farce6537]

Thanks Violet and April for the useful info. Violet, the nerve second block caused numbness at first and no pain for about a week. I don’t think I have Rectocele because my PT checked me for it and didn’t feel anything. Neither did I. She also made me test pooping and lifting my buttcheek and if passing stool made me feel better then that would indicate Rectocele would be involved. But when I did that, it actually hurt. Unfortunately now, my vagina is being affected. The whole area of the vulva ,mons pubis, clitoris, vestibule is sensitive and raw and red. I’m getting this tingly feeling in my clitoris. As well as pins and needles feeling. It is very debilitating. My legs are itchy and red and also underneath my buttcheeks. I can’t sit. I don’t know why this is happening to my body as I don’t feel like I’ve done anything to aggravate that area. I’ve tried sits baths, teas, stretching, lidocaine and it all comes back. I tried using capsaicin but I got it off of amazon and it was called capsix 0.1 by toprail medical. I used it on the side of my right vagina and it burned like hell!! I had to put olive oil to get it off my skin. How were you able to put that on your vagina? It burns like hell. You are very strong. Anyways, I know you said you mostly had vaginal symptoms, what did you do to calm them down besides the capsix? Did you also experience the redness, pins amd needles and clitoral pain?

[Violet M]

Hi Farce,

It sounds like the main trunk of the pudendal nerve is being affected then, since you have pain in all of those areas innervated by the pudendal nerve. Also, since the pudendal nerve block gave you relief for a week, that also points toward a diagnosis of PN.

Well, I'm sorry the capsaicin didn't work for you. I think that pubmed article I posted was recommending it primarily for itching. But if your symptom is primarily pain, not itching, that's a bit different. I used the soothenol brand of capsaicin for itching as I was recovering from PNE surgery when the pain was calming down but I had severe itching. It burned initially but then the itching calmed down and I was able to sleep after using it. There can come a point with this disease where nothing topical seems to help and you might need to add some oral medications to get you through it. Before surgery when the pain was severe, I used some medications -- oxycodone at night, clonazepam at night, and lexapro. I toughed it out during the day because I didn't want to get addicted to the oxycodone but I couldn't sleep without some kind of medication. I also used a heating pad or gel ice packs, or when I was desperate I used frozen balloons inserted vaginally.

Some people have said that their skin gets red with pudendal neuralgia but many people don't have any visible redness. I didn't have any redness, but before surgery my primary symptom was burning pain that eventually spread through the whole pelvic area. It kind of felt like I had been hit by a baseball bat in the crotch with the pain being worse on one side.

I'm wondering why Dr. Marvel was not recommending surgery and was concerned about scar tissue. Are you someone who naturally forms a lot of scar tissue?

Violet

[Farce6537]

I don’t have history of forming scar tissue, I think it’s more about how the formation of scar tissue can be a side effect of the surgery. He seems very anti-surgery and he is the one that told me that to fix my issues I just have to drink water and eat more fiber lol. I’m looking to get the opinion of other physicians but so far no one has told me I should get surgery. A pain specialist I saw that recommended the ganglion blocks said there are other treatment I can try like radio frequency ablation or ketamine transfusion. Something else I’m looking to try is a hyperbaric oxygen therapy to reduce inflammation. I’m honestly just so shocked at how awful my genitals and rectum get when I flare and how within a couple of days I’m somewhat able to get out of them. But also, I can quickly get a flare up symptom easily so I’m just in a delicate place now.

[April]

Hi Farce,

I'm so sorry to hear about all the pain. The treatments you listed are option that might give you pain relief, although I think all of them have mixed results, based on my reading of the forum. But, since you've been dealing with this for three years, you may also want to consider meeting with another surgeon to get more information about your surgery options, as Violet said. I met with two different surgeons before deciding to go ahead with it. I think multiple opinions about something this important is a good idea.

Take care,
April

[Violet M]

Something else I’m looking to try is a hyperbaric oxygen therapy to reduce inflammation.

I did some hyperbaric oxygen treatments after PNE surgery. Dr. Antolak told me it wouldn't be helpful if the nerve was compressed/entrapped and that the nerve would have to be released from entrapment first before hyperbaric oxygen would help. But, if you don't have an entrapment it might be worth a try. The tricky part is figuring out if you likely have an entrapment. Like April said, multiple opinions can be helpful.

Violet