Does this sound/behave like PN?

[Itsmemoira]

Hello everyone, new to the forum and unsure whether I have PN but I’m struggling to alleviate my chronic symptoms and get a diagnosis so I’m hopeful someone may help me to work out what’s going on as I’m desperate.
For 11 months I have been suffering with mysterious symptoms that I will list below.
I initially saw an MSK specialist who referred me for a spine MRI & subsequently saw a spinal surgeon who referred me to a neurologist.
They respectively say my symptoms aren’t spinal or neurological- however the neuro has referred for nerve conduction studies and a brain MRI which I’m having over the coming weeks. (I’m guessing to exclude certain problems more than anything).
I’m female, aged 43, one natural childbirth 17 years ago, had SPD (symphysis pubic dysfunction).

I’ll list the symptoms and how they behave.
* The most important thing to note is I have no pain whatsoever, instead it’s a constant tingling/vibrating/pins and needles sensation and some quivering muscles.
* Its difficult to pinpoint exactly where its originating, but I can feel the pins and needles sensation across my “seat” area and deep within my core/vaginal area and at times it it feels as though I have a long vibrator stuck up my backside.
* This sensation of pins and needles can go into alternate or both legs and the soles of my feet around my heels. It can also sometimes feel as though its going accross my upper back/shoulders and into my neck.
* The muscles around my belly button can feel quivery and like jelly sometimes, as can my deeper abdominals.
* My uretha twitches occasionally and I have had urinary stress incontinence and urgency for the last 6 months.
* When I wake up in the morning I feel normal for a few minutes until I get up. As I move and sit everything starts up and it steadily worsens over the course of the day,
* The sensations never go away, they just have a “volume” and range from low to all encompassing and distressing, taking my breath away and making me nauseous. It has woken me up from sleep sometimes.
* Standing and moving around makes things feel better. Sitting down makes things worse and lying down worse still.

I saw a chiropractor 3 times last week (thats how they treat initially). I had some relief between the first and second treatments, the second treatment worked on my pelvis and the next day my symptoms were aggravated massively. (I had also done foam rollering of my Piriformis and thighs though). The third treatment focussed on my sacrum and symptoms were lessened for 24 hours but then went back to their usual strength.

I discovered today that if I clench my pelvic floor muscles hard and put pressure on my vulva/perinneum area with my hand the pins and needles decrease (which led me to search up pelvic floor and nerve issues). I discovered perhaps pudendal neuralgia and in many ways it fits, but in the absence of pain and the fact its worse lying down I’m just not so sure.
I’m currently taking pregabalin and robaxin which don’t seem to help much. The neurologist prescribed carbamazepine which I haven’t taken yet as it’s pretty heavy and wanted to try the chiropractor first.

Does anyone have any ideas? Does the fact I have no pain exclude a diagnosis of PN? The pins and needles are horrendous and honestly sometimes feel I’d rather have pain because at least that can be controlled whereas this cant. I’m absolutely desperate and this regularly has me feeling suicidal. If anyone has any ideas or advice then it would be most welcome. Thank you in advance.

[Violet M]

Well, it certainly sounds very distressing and puzzling. Regarding your question about pain and pudendal neuralgia, in my own experience I initially didn't have much pain and I did experience some pins and needles sensations in the pelvic area. I think it was a few months before it progressed into pain. It sounds like your symptoms are more widespread than just pelvic pain though so I'm not sure what to say about that. Did you have any in incidents or triggers you can point to that might have caused this to start? How did your nerve conduction studies turn out?
In considering a possible diagnosis of pudendal neuralgia, you might want to see a pelvic floor PT who can assess your pelvis for any alignment abnormalities and assess the status of your pelvic floor muscles via a pelvic exam.

Violet

[harpstar13]

I would say a resounding YES -- I had a few months of exactly what you described before the pain set in. I hope yours doesn't get to that!

[harpstar13]

Sorry, I forgot to ask -- has your doctor mentioned Gabapentin as a drug you could try? I've had pretty good success with it. Heating pad between the legs seems to be the best method for me to calm down the twitching/pins and needles sensation, but sometimes I also use a TENs device which on some nights has been an absolute lifesaver. Sincere best of luck to you.