Pudendal and/or Posterior Femoral Cutaneous nerve problems?

[William]

Hello, everyone! Here's my story. I would greatly appreciate any insight that you may have regarding my problems.

In January 2017, after a short bout of harder-than-normal BMs, I got a superficial fissure, internal hemorrhoids, and some bizarre pain that would radiate into my left butt cheek and down into my left thigh. My first CRS successfully treated the fissure with nifedipine, but my pain didn’t improve. He figured that I had a hidden fissure and recommended Botox, but I didn’t agree with the recommendation (or like him much, for that matter) so I got a new CRS.

The new CRS treated my internal hemorrhoids with infrared coagulation, but was puzzled as to why I still had pains because he could see that they had shrunk. I could direct him to the exact location of pain in my anus, but he said there was nothing there. He figured it was a muscle problem and sent me to PT for biofeedback.

My PT decided that my problem was due to hip misalignment and tight pelvic muscles and recommended exercises, self-dilation, and sphincter muscle stretching. This helped reduce the radiating pain, but not the pain during or after BMs. I also developed an intense stinging or burning pain in my anus after BMs that could last anywhere from minutes to 8 hours.

I was still bleeding, so my CRS treated the hemorrhoids a second time. I no longer bleed and rarely have pain during a BM, but the intense stinging or burning pain afterwards is still there.

After reading about pelvic nerve problems, particularly with the pudendal and posterior femoral cutaneous, I’m convinced that that is the main source of my pain. Some urinary changes that I’ve had also seem to be possibly associated with those nerve.

The pain seems to move and change its form. It is usually only one of the following:

1. Stabbing, stinging or burning pain slightly inside the anus on the left side that is triggered and aggravated by BMs, walking, sitting normally, or bending. Can also feel like a thumbtack, a small rock, or a cocklebur.
2. Feels like someone is pinching me hard between my leg and anus.
3. Moves more left into my left butt cheek. Feels like a muscle cramp.
4. Moves down my leg into my thigh. Also like a cramp.

The PT (self-dilation and sphincter stretching) reduced the incidence of 3 and 4.

Other symptoms:
- When there is no pain, it can still feel like something is hanging out of my anus.
- Sometimes it feels similar to the feeling of a sensitive tooth.
- Sometimes I just feel a tickle inside the anal canal.
- The area around the left sit bone is always sore. Massaging it or applying cold makes it worse.

Other weird symptoms:
- Rectal exams seem to make it feel a little better for about a day.
- If I lie down and lift my left leg for a while, the pain can subside somewhat or completely. Putting a small pillow under my left thigh while sitting helps.
- Swimming seems to help. I never feel discomfort while doing it.
- Passing gas usually takes away the pain for a few moments.
- Grabbing my right butt cheek and pulling it outward slightly (spreading the cheeks) usually gets rid of any sharp-ish pain temporarily.
- When I quit taking morning sitz baths, my condition got worse.
- Sometimes it hurts to pee (occasionally very intensely). Sometimes it’s difficult to keep the urine stream going and I need a “restart”.
- In early 2017, I had intense rectal cramp-like pain with sexual arousal. That condition slowly improved over time to only happening during sex. It is now mostly gone.

Thanks for reading my huge wall of text.

[April]

Hi William,

Many of those symptoms sound like pn symptoms. Have you asked your pt about the possibility of your symptoms being related to pn? It sounds like your muscles are tense and that is contributing to the pain, but a physical therapist might be able to help you figure out if pn is creating the tense muscles. Have you talked to doctor about pn as a possible diagnosis? You could also request an mri to rule out other sources of the pain.

April

[William]

Thanks for you response, April!

I've mentioned the possibility of nerve issues to my CRS and PT. I'm very annoyed that I'm the one who had to bring it up, considering my symptoms seem to point to it. My PT referred me to a nerve specialist that works at the same pelvic health center. I don't think she necessarily focuses on PN, but I'll give her a try (I have an appt next week). My CRS says if it continues to be a problem that he can send me to someone in Boston to try nerve blocks.

Muscle tightness seems to be the main factor. I'm not sure what caused it, but it seems that I have to dilate or get PT regularly to avoid some of the symptoms (or to make them less intense). The muscles had been fine since I had an LIS for a fissure in 2010. I've optimize my diet to make my BMs as soft as possible, but any tiny amount of hardness results in worse pain for the day.

[Violet M]

Hi William,

I did not find biofeedback to be particularly helpful. Is there any way you could get to a PT who specializes in PN for an opinion. It might be worth it.

Violet

[William]

She's never done biofeedback, for the same reason that you gave (she doesn't find it useful). She's just done the muscle stretching, given me hip alignment exercises, and encouraged self-dilation.

[Violet M]

So, did this PT do an exam of the pelvic floor muscles via the rectum and if so, did they touch that one spot of pain that you said you can direct your doctor to? What structures are at that one spot of pain? Is is a muscle, is it the ischial spine or along alcock's canal where the course of the pudendal nerve runs? Or is it in the anal sphincter which is innervated by the pudendal nerve? If this is a pelvic floor PT who is experienced in treating pudendal neuralgia, they should be able to locate those structures and assess them for pain or tenderness.

Violet

[William]

My PT isn't experienced with PN, unfortunately. My doctor did not give me any details about the spot, other than the fact that he didn't see anything. At a later visit, I mentioned potential nerve issues and he mentioned possibly sending me to another specialist if the second hemorrhoid treatment didn't fix the issue. I'll give it another week or so (it was done in early April) before I make another appointment.

[Violet M]

Hi William,

Well, I hope the pain settles down for you but if not maybe you will be able to get a proper diagnosis so you know where to go from here.

Take care,

Violet