Do I have Pudendal Neuralgia or Levator Ani

[JeanieC]

J, my wost pain is similar to yours, and placing a gel ice pack on the outside of the most painful area is very helpful. I have been sleeping with ice packs for a long time now.

Aspirin is not recommended for this type of pain, it is hard on the stomach unless it is enteric coated, and is for mild to moderate pain, as are all the over the counter painkillers. There is a whole section of the forum about pain management, so that would be a good place to learn about the various meds used to treat neurological pain. Does your doctor have you on muscle relaxants? I would think those would be prescribed for a dx of levator spasms. Does your biofeedback therapist put you on a machine that prints out an EKG? If so, you can ask if any muscle spasms show up on the printout. Also the machine records a baseline pressure, which you can ask the therapist if it is within the normal range, too high or low. If it is normal plus there are no spasms being recorded, then perhaps it would be time to question the diagnosis of pelvic floor dysfunction and consider that PN fits more of your symptoms. I have personally been on this journey on my way to the correct diagnosis.

Keep us posted, Jeanie

[tummydepressed]

Hi Jeanie. It seems I am really not alone.

I was put on a machine in my first bio-feedback session. At the time, I didn't understand as much about the whole procedure and didn't know the right questions to ask. However, I do know they were surprised at some of the results. They expanded a balloon inside me that I didn't really feel until it was very large. I was also unable to expel a different balloon filled with water, roughly the same size as a small stool.

I will ask more when I go in January. Jeanie, can I ask if my experience of BM's sounds familiar to others with the same sort of pain? This sort of waiting around until something 'clears' and then waiting again....

Thanks, J

[calluna]

It sounds similar to how things were for me, immediately after my pelvic reconstruction. My rearranged bowel did not cope too well at first. Added to this was the fact that I was not allowed to strain - not at all! - or I might break my nice new insides.

The colorectal people explained to me that the whole process is a complicated interaction of different muscles and pressure receptors, and as mine was completely rearranged, nothing was the same as before surgery. I was on Movicol for many weeks whilst my bowel relearnt how to function - which it did in the end. I no longer need the Movicol.

I totally agree with JeanieC, ice is a great help with that particular pain which you mention (which I think many of us have) as the whole area can be numbed this way. And yes, I too know about going to sleep with an ice pack...

[mikette]

Hi calluna, can I ask you which kind of surgery did you have?
did they use mesh or did repair rectocele, prolapse, etc?

[JeanieC]

J, many of us have the feeling of a foreign body in the rectum. In my own case this makes me feel as if I am never really empty although I must be, after going once or twice a day. I have had to learn not to spend too much time in the bathroom as it will only make me feel worse. I have felt "dysfunctional" in this department ever since the beginning of PN symptoms with the ball in rectum sensation. I was diagnosed with a rectocele (downward displacement of rectum with pouching into vagina) initially and had this repaired, which only added to my pain problem. I think rectocele is a female problem only, and is associated with childbearing and aging, so this not at all likely for you. when my problems continued I did have the balloon manometry that you mention but mine showed reduced volume capacity whereas yours seems to indicate the opposite. It does seem like you are getting excellent colorectal treatment but my experience from my own case is that these specialists just do not seem to know about PNE.

I really do not know if many PN sufferers have quite as difficult a problem with BMs as you do, just that many do have some type of bowel problem. I am hoping a man will respond to this thread, as your symptoms are definitely in the territory of the pudendal nerve.

[mikette]

J, many of us have the feeling of a foreign body in the rectum. In my own case this makes me feel as if I am never really empty although I must be, after going once or twice a day. I have had to learn not to spend too much time in the bathroom as it will only make me feel worse.

sorry for my english, I'm from Italy.
do you still feel this sensation, even after TG surgery? or this discomfort healed ?
which treatments do you have for that, meds like lyrica, miorelaxant or something else?
I've been operated to the rectum for internal prolapse and I live in a nightmare and feel every minute, every second the rectum full.
I'm also wondering if feeling a foreign body in the rectum is a symptom of PN o PNE.....

[tummydepressed]

Thanks Jeanie C... I just wonder from the position of the 'ball' if I do actually have levator ani, as it seems to be more in relation with the area of this nerve. And I guess the problems are very similar as they are all connected to the nerves of the pelvic floor..... I will do more research, you have all given me much to think on.

I just need to pin down which it is to move forward, because treatment is recommended differently. With Levator Ani I can run and need to make sure stools are firmer according to one source. But with PNE I can only walk and have to go for apple sauce stools!!!

Thanks again, J

[calluna]

Hi calluna, can I ask you which kind of surgery did you have?
did they use mesh or did repair rectocele, prolapse, etc?

Hi mikette

I had a total pelvic reconstruction, innovative surgery here in the UK, done by a visiting specialist from Australia. I have had problems with mutliple prolapse for many years and I think my total number of surgeries there is eight - far too many - including cystocele and rectocele (both done several times), a vaginal hysterectomy, and also bladder surgery. This last time I had a very severe prolapse (which included rectocele amongst other things) and a large amount of mesh was used in the repair.

[calluna]

J, many of us have the feeling of a foreign body in the rectum. In my own case this makes me feel as if I am never really empty although I must be, after going once or twice a day. I have had to learn not to spend too much time in the bathroom as it will only make me feel worse.

sorry for my english, I'm from Italy.
do you still feel this sensation, even after TG surgery? or this discomfort healed ?
which treatments do you have for that, meds like lyrica, miorelaxant or something else?
I've been operated to the rectum for internal prolapse and I live in a nightmare and feel every minute, every second the rectum full.
I'm also wondering if feeling a foreign body in the rectum is a symptom of PN o PNE.....

Mikette - first, your English is very good!

Yes, the feeling of a foreign body in the rectum is a common symptom of PN, many of us have this. You are not alone.

I don't know how long it is since your surgery, but it does take time for the bowel to 're-learn' how to work normally, after any surgery where it is repositioned. What is normal, is not the same as it was before the surgery, the system has to learn that this new situation is normal, and how the sensations are interpreted also has to be re-learnt. The colo-rectal doctors explained this to me, the system is complicated and it does take time to adjust to the new 'normal' - until this happens, sensations that are felt may not correspond to what is actually happening there - for instance, feeling full when in reality this is not the case.

I am sure that JeanieC will be along soon to answer your questions about the sensations after TG surgery.

[JeanieC]

do you still feel this sensation, even after TG surgery? or this discomfort healed ?
which treatments do you have for that, meds like lyrica, miorelaxant or something else?

Mikette,

Sorry to hear you are suffering this miserable pain after your prolapse surgery. To answer your questions, yes I do still have this same feeling after my PN surgery. My nerve was found to be stretched and trapped in the ligaments, so may take a while for it to heal. I am just hoping at this point that it will heal. The surgery does not help everyone, in fact the statistics usually quoted are about 2 out of 3 will be improved significantly. I presently take amytriptline for sleep, oyxcodone/acetaminophen for pain and clonazepam. I did try lyrica before surgery but could not tolerate the side effects.

Have you found anything that helps you?