Pudendus or Piriformis and tingling sensation into both feet

[Filofax]

Google Translate, i am from Germany:
Hello,
I'm new here and this is my story, maybe someone can help me?
I am male, 61 years old and have been having recurring problems with painful urination for a long time now. At the beginning it was inflammation and then no more and the intervals at which it occurred became steadily shorter. I have been in pain almost every day for 1 year and have been in pain for several hours every day since October 2023. In the beginning it was always after urination and now it comes and goes throughout the day. When I read it like that it could have something to do with the pudendal nerve or piriformis. Currently it starts when I wake up in the morning, but I can sleep through the night. At 6 o'clock pain in the anus or on the perineum on the left, sometimes a pressure more posteriorly in the right pelvis. Then the pain often moves to the left into the urethra and back to the perineum. At 10 a.m. it subsides and almost disappears, only to reappear violently from 12 p.m. to 4 p.m. Then it subsides again, sometimes it disappears spontaneously or comes back very quickly. It's a burning and stabbing sensation and for 4 months I've had a general feeling of cold and then it starts to burn in the inside of my thighs and there's a tingling sensation on the inside of both feet down to the soles and toes. In addition, my big toes and the toe next to them usually go numb when I sit. That's really strange, is that from the piriformis?
Because of my problem, I went for shock wave treatment and noticed that my left foot was really shaking when I was at rest. When you press the clutch while driving and stop, it starts to shake violently. The foot moves several centimeters, my sense of smell has been very poor for a long time and my mother had Parkinson's.
The family doctor doesn't really know what to do with me, the urologist organically says everything is fine after I had been taking antibiotics for weeks and there are no bacteria.
Does pudendal neuralgia also affect the legs?
Which medications help?
The painkillers Paracetamol, Ibuprofen, Metazimol, Vivomo, Diclofenac have no effect.

[April]

Welcome to forum, Filofax.

That all sounds really difficult. I don't think the pudendal nerve connects to the toes in the way that the lumbar nerves do. So the tingling in the toes sounds like lumbar nerves (I have a bad back and get that occasionally.) But, the pain after urinating is common with pn I often have that. (I also often get pain after a bowel movement.) And the unexpected ups and downs in pain is not uncommon with pn. And the burning and stabbing are sensations that are common with pn pain. So it could be pn and/or another nerve. It might be the the pn pain is triggering a broader pain response or referred pain, which might explain the pain those other locations. So you've seen a pain doctor and a urologist. Can either of them refer you to a pt and/or to another urologist who is knowledgeable about pn? Have you had an MRI? There is a protocol for an MRI developed by Dr. Hollis Potter that is designed to identify pn (although most of the time pn doesn't show up on an MRI). But, if you do get one, you could reach out to her office (in NY) to get that. Her office will email it to you, I think.

April

[Filofax]

I received my MRI of my lumbar spine today and I have a protrusion that is slightly pressing on the nerve canal. The doctor said it would only cause back pain but not the tingling in the legs. In 2 weeks I finally have my appointment with the neurologist.

[Violet M]

PN doesn't typically cause foot or leg problems, but you could have some kind of musculoskeletal condition that is causing both PN and some of the other foot/leg problems. You could ask to have an MRI of the lumbosacral plexus if they didn't already do that. Also have your physical therapist check you for piriformis syndrome that might be pressing on the sciatic nerve, or for other things like SI joint dysfunction since you get posterior pelvic pain.

Violet

[Filofax]

I was at this Doctor and he find nothing special . At the right side of my prostate is one Triggerpoint.
The neural therapy had no effect and now i take pregabalin and tilidin.
Specialist designations
Orthopedics and trauma surgery
Special pain therapy
Additional designations
Manual medicine / chiropractic
Basic psychosomatic care
Special activities
President of the IGTM (International Society for Pain and Trigger Point Medicine)
Internationally active speaker on chronic pelvic pain syndrome
Completed further training
Neural therapy
Mesotherapy
Trigger point medicine (IMTT)
Curative and aesthetic botulinum therapy
Thorn therapy

[Violet M]

Is that a list of all of the things you have tried?

[Filofax]

No, I went to an orthopedist who specializes in chronic pelvic pain. This is the list from his homepage with his education and activities

[Violet M]

Well, good luck with your neurology appointment. Some neurologists know about pudendal neuralgia but some don't know much. Hopefully the one you are seeing will be able to help you.

Violet

[Filofax]

Yes, but I suspect that I have a pinched or irritated nerve. This can happen muscularly or through a vein. or through tension that no longer loosens through stimulus and independence. I found some good information about what happened there:
https://cistite.info/de/neuropathie/neu ... erzen.html

Oh, this is italy or german, look for neuropathic pain

[Filofax]

I have now noticed that I have a tense muscle in my pelvic floor. The pain is more on the left side of my perineum and it is stabbing, burning pain. But when I feel myself rectally with my finger, I feel a tense muscle strand on the right side of the sphincter and obturator internus towards the prostate. And no matter how I move myself or my legs, it doesn't let up. That's probably causing my problem and I'm wondering how I can get it loose. Should i stretch it manually or pressing it sometimes ?