I fear that I may have PN.....desperate for some help

[Laramarie]

Hi desperate
All I can say is just wait until you see dr G so he can explain things to you and do the testing on you that needs to be done. He does a history and complete physical with an internal examination and he will know what medical condition you have or don't have.

As for the physio, I went weekly pre op but it didn't help me because I had a true entrapment of the pudendal nerve but if it is helping you then continue. I think they recommend once a week but I'm sure it wouldn't hurt to go more if it's helping.

I was in so much pain that I needed medications. I honestly couldn't function. I started with Lyrica and it helped me. It's not a narcotic so you don't have to worry about getting addicted. Is that why you are opposed to meds right now?

The ultrasound guided nerve blocks were necessary for me in order to get a diagnostic criteria obtained for OHIP. They want 3 blocks done here in Ontario. The blocks also helped with the pain while I was waiting to get into a surgeon in the states. The "out of country" forms have to be done by a specialist in Ontario. I did not have the potter MRI but it probably isn't a bad idea. You can get your urologist to do the out of country forms to have that paid for so you don't have to pay out of pocket first. Maybe you should make an appointment in NY.

I know it is a very painful condition but you have all of us to help you get through it and find the resources you need to cope. Please feel free to ask anything and I will try to help you as much as I can. I am still healing from surgery and know the hurt and pain that PN causes.

Take care
Lara

[janetm2]

Desperate,
So sorry this has hit you so hard. A few things I heard here on the forum. Nerve blocks are used mostly as diagnostic so you may want to do one or two to see if they narrow down where your problem is located. Also you may want to consider some drugs to keep from getting into a CNS pain cycle that could be tough to get out of later. Some people that were hard core against the drugs later felt it would have been better to have taken them sooner. Certainly up to you just wanted to pass that along. I chose to take painkillers early on in life due to chronic pain flares in my feet because I felt I would lose my job and possibly not get disability and they worked to bring the flares down so I have stayed employed since I wss in my late 20's until noew in my 50's and hoping to make it to retirement in 2 years, again personal choice. As for PT I went maybe 2 times a week pre-surgery until they said they could not help until after surgery(they thought I was entrapped ehich PT does not solve and sent me for official PNE diagnosis). Post surgery they said I would not be able to tolerate 2 days in a row so at most three days a week if on Monday, Weds and Friday. I wish you luck.
Janet

[lucky]

To all that have done PT: what did the sessions consist of?


I currently do two 30 minute sessions a week. The PT uses that time to stretch the pelvic muscles via the rectum. I basically just lie there for 30 minutes while she pulls and stretches away.

Is there anything else they should be doing on me?

[Karyn]

Hi Lucky,
How are you doing with tolerating the internal PT work?
At your first visit, do you receive a good evaluation? What type of feedback are you getting from your therapist? Have they been able to identify anything that would contribute to the tight PF?

Best regards,
Karyn

[lucky]

Karyn,


The actual therapy is not too uncomfortable. It really just consists of pulling on the muscles and rubbing (or something like that).


After the evaluation, they seemed pretty confident that it's only pelvic floor dysfunction. I asked if they had had people come in with my symptoms, and they said they've treated patients who were worse off. By treating, they meant that patients finished therapy cured or almost cured, but definitely satisfied.

Regarding PN/PNE, they assured me that I'd be in terrible pain (which I'm not really). So there's that. They have not really touched on what could have caused a tight PF, but they've suggested that heavy weightlifting might be the reason.

I'm doing the stretches they've prescribed twice a day and I've stopped weightlifting. Alcohol consumption is a thing of the past and I stopped eating all foods that might irritate the bladder. At their recommendation, I will not engage in any sexual activity for the next 2 months or so.


I've gone to 4 sessions and have not noticed any improvement. They seem confident and constantly reassure me that I've come to the right place. They believe I will begin to see improvements at around the 6 week mark.



Does this sound familiar to anyone?

[stephanies]

It is good news that the PT is not making you more uncomfortable. It seems like your therapist thinks a little more time will tell whether PT will improve your pain. Has your PT treated anyone with PN pain who has not greatly improved from PT alone?

Sincerely,
Stephanies

[Violet M]

Lucky, if you have any misalignment or SI joint dysfunction in addition to a tense pelvic floor you might want to ask your PT about whether you should be receiving any treatments that will correct the misalignment in addition to doing myofascial release of the pelvic floor.

If you quit PT what other options do you have? I'm not sure it would make sense to move on to more invasive procedures if you aren't in a lot of pain and PT isn't making you worse. Only you can decide if it's worth the money to give it a chance but it certainly makes sense to me to continue the treatment for 6 weeks before drawing a final conclusion on the success of PT.

Violet

[lucky]

@ Violet, I had PT check SI joint and she said it seemed fine. I honestly don't know what to do if PT doesn't work out. There don't seem to be any doctors in Florida for PN/PNE.

'm starting to lose hope. Can't really say that after about 5 visits I've noticed any improvement. The only thing that keeps me going is their insistence that all I have is a tight pelvic floor, and that it can be healed with PT.


Any other key questions I should ask before wrapping this whole thing up at around the 6-8 week mark?..with respect to PN/PNE that is?

I am currently powerwalking about an hour and a half a day. Should I continue or stop? I want to make sure that I do absolutely everything conducive to getting better. You know, make sure I didn't skip over anything that may be holding me back from rehabilitating.



Also, for those of you with PFD and not PN/PNE, what were your symptoms like? how long did you do PT etc?


Thanks!

[Karyn]

Hi Lucky,
I went back to the beginning of this thread and reviewed your symptoms again. Are you still experiencing all of them? Has anything improved? Gotten worse?
A few comments and suggestions:
1. I understand you've already seen a urologist. It may be worth your while to get a second opinion.
2. Has a hernia and/or hip pathology been ruled out?
3.

The only thing that keeps me going is their insistence that all I have is a tight pelvic floor, and that it can be healed with PT.

OK. So, after 5 visits; has your therapist noted any improvement with her work? Are you communicating that you're not finding the treatments helpful?
4.

I am currently powerwalking about an hour and a half a day. Should I continue or stop?

How does this make you feel? Better? Worse? Only you can answer this question.
5.

I want to make sure that I do absolutely everything conducive to getting better. You know, make sure I didn't skip over anything that may be holding me back from rehabilitating.

This is very difficult to answer without knowing WHAT you're trying to recover from. I don't know what your schedule is, but five PT treatments really isn't enough. Especially if you're only going once a week. If a "tight pelvic floor" is the only thing you've got to go on for now, and weight lifting is the speculated cause with no other biomechanical or musculoskeletal contributors; perhaps you could discuss botox injections with your PT?

6. Unfortunately, the vast majority of us don't have a PN Specialist near by. You're going to have to travel to get PN(E) confirmed or ruled out.

Best,
Karyn

[lucky]

@Karyn-Hernias have been ruled out; i went to a specialist and he found nothing.


I am still experiencing all symptoms with the exception of the golfball feeling in rectum (it's definitely less intense). Symptoms have not gotten worse nor better.

I have communicated with PT about lack of improvement and they still seem confident that I'll be able to put this all behind me.

Powerwalking makes my butt sore in addition to making my hips ache, but the PT said it could actually be good for me.

I will definitely take botox into consideration! After today's visit, my PT stressed that she wants me to take DIAZEPAM (suppository). Anyone take this before?


She also wants me to try resisting the urge to urinate, i.e. hold it as long as I can in. I'm not sure why she would ask this of me, but I'm guessing there's a psychological reason behind it.


So my treatment looks like this so far:

-PT twice a week :interval work. manual stretching and lengthening of muscles

-10mg of Diazepam 4 times a day (suppository)

-Stretching of pelvic floor muscles 2-3 times a day

-Resisting urge to urinate. Abstain from drinking liquids after 8pm.

-Suspend all explosive exercise-weightlifting, basketball, running.

-Abstain from any sex and masturbation, in addition to alcohol.

EDIT: is pain in the perineum always a symptom of PN/PNE??