Possible PN and suicide

[Pearl6]

I am currently taking Gabapentin. I take it twice a day and it helps somewhat. I am getting a lower back MRI soon.

Thanks for the advice, Violet.

Is shooting pain worse than burning pain? I would give anything to just have numbness and tingling instead of sharp pain. To me, I could handle a little bit of numbness. I don't know much about nerves, but I feel like shooting pain means more damage than tingling or numbness. I can't even drive without my feet being in pain.

Thank you for the info and support Emily. I have actually called them several times. I have been having suicidal thoughts daily.

[Violet M]

Shooting pain may feel worse than numbness but it doesn't mean your nerve is more damaged. You should have more answers this week after you see the physical therapist. Do you have a date for the MRI yet?

Violet

[Pearl6]

The date for my MRI is thursday. I've had a pelvic MRI already and now I'm having a lower back MRI.

I hope they don't find anything on my MRI. I'm going to see a neurologist afterwards and ask for nerve conduction studies and EMG's.
Does a regular neurologist do EMGS of nerves in the lower spine and pelvis?

Violet, how long did you have constipation before getting PN pain? Do you think I can heal without surgery?

[Violet M]

The date for my MRI is thursday. I've had a pelvic MRI already and now I'm having a lower back MRI.

I hope they don't find anything on my MRI. I'm going to see a neurologist afterwards and ask for nerve conduction studies and EMG's.
Does a regular neurologist do EMGS of nerves in the lower spine and pelvis?

Violet, how long did you have constipation before getting PN pain? Do you think I can heal without surgery?

At least 40 years. Yes, it is possible you might heal without surgery -- depending on what the underlying pathology is and if you can get the right treatments.

Some neurologists might do the pudendal nerve motor latency test and EMG's of the pelvic muscles like the ischiocavernosus and bulbospongiosus but most wouldn't. The neurologist I saw didn't have a clue about pudendal neuralgia. She told me to go see a psychiatrist. It was one of the lowest points of my PNE journey. So it might be smart to go into your neurology appointment with low expectations, unless this is a neurologist who has a special interest in treating pelvic nerves. I found the pelvic floor physical therapist to be much more knowledgeable about pelvic nerves and muscles than the neurologist.

Violet

[Pearl6]

I really hope my neurologist is aware of that nerve and the nerves around it. If not, I will talk to my PT about it more.

I had my first PT appointment today and the exercises she gave me reduced my pain for a few hours. She said my muscles were likely going into spasm and gave me stretches to do 3 times a day. I'm feeling a little optimistic and think I can heal with stretching and PT.

[Violet M]

Pearl, I'm glad to hear that PT seemed to help. Be careful not to overdo with the stretching.

Do you know if your PT checked for tenderness along the course of the pudendal nerve during a vaginal exam -- at the ischial spine or at Alcock's canal?

Violet

[Pearl6]

She didn't do the internal part of the exam. But I asked her if there are nerves between the vagina and rectum and she said yes.

So I think she might be aware of the pudendal nerve.

[Violet M]

Pearl, I think it's important to see someone who knows enough to exam the pelvic floor and assess whether the pudendal nerve is tender along the course of the nerve. The reason I say this, is that tenderness along the course of the nerve can be an indication of pudendal nerve entrapment and if the nerve is entrapped you have to be careful about stretching because it can damage the nerve further. Most PT's that I know of who specialize in pudendal neuralgia would do internal work to relieve any tension in the pelvic floor.

The other reason I am cautioning you is because before I had a diagnosis, I initially went to a PT who had me doing a lot of stretches. At first it seemed to relieve my pain because stretching the muscles felt good but over time, the nerve became more irritated and it pushed me over the edge from mild pain into severe pain. So, please be careful and if possible, see someone who is trained specifically in treating pudendal neuralgia.

Violet

[Pearl6]

I think she was hesitant to do the internal exam because it was our first meeting. I’m not sure if she knows about the pudendal nerve, but I’ll find out next month when she gives the internal exam.
What is the internal work that PT’s do for pudendal neuralgia?

How long were you doing the stretches? Should I just continue my stretches for the rest of the month if they seem to be helping? I’m scared and at a loss as to what to do.

[Violet M]

Hi Pearl,

If you have pain along the course of the pudendal nerve when it is pressed, I would be very careful about stretching. The reason is that if the nerve is entrapped, it cannot glide when you stretch and injury can occur to the nerve. I can't way for sure what's best for you, I can only tell you my experience and that stretching sent me from mild symptoms into major symptoms. Maybe some mild stretching would be OK and it it seems to help continue with it.

The best way I can describe internal work (myfascial release) is that it feels like massage of the pelvic floor muscles where the PT uses their finger to try to work the knots or trigger points out of the muscles. Before my PNE surgery it caused a huge flare-up in symptoms afterwards because the PN runs right in between the major pelvic floor muscles but for many people it helps calm down the muscles. Is there any way you can get to an experienced PT or physician who can press along the pudendal nerve and see if it is tender?

Violet