New member with questions on PNE diagnosis

[shawnmellis]

Hi, When the nerve block did get close enough to the pudendal nerve, my perineum and my entire buttocks was nubmb, and all pain was gone for 7 hours, so I was lucky that at least 1 of them got close enough to diagnose me.
Shawn

[Violet M]

although I know it can get worse, but its so bad now I really don't have much to lose.

I know what you mean -- that's why I decided to go ahead with surgery. Good luck.

Violet

[helenlegs 11]

Let us all know what happens with your procedure next month. The way you have described you pain in your meetings, bending your fingers . . . Arrgh! not fair! I hope that you do get a better idea if your pain is PN related and can proceed with treatment from there.
Good luck whatever you decide to do.
Helen

[REV800X]

Thanks Helen, I will post the outcome next month, and then post what I decide to move ahead with. It is so strange that I can have a few great days with no pain (but still taking ibuprohen, etc), and then have the next day be a 10 on the pain scale. It goes up and down.... I can tell the second I wake up in the morning what the day will be like. Having this sure makes me appreciate the good days with little or no pain, but when it is bad I also try to remember that this is not going to kill me and some people live with things much worse... Atleast I try to think of it that way but sometimes its hard...

Thanks again to all for the advice and comments - I appreciate them all.

[REV800X]

Well, after the diagnosis of IC last November by Dr. Antolak, I wasn't sure what to expect. He prescribed 90 days of Cipro which I took as well as have been seeing a pelvic pain PT now since December. I had been functioning perfect with no pain the last several months. 5 to 7 miles a day on the treadmill, working out, snowmobiling, and on the motorcycle. The Cipro ended two weeks ago and the pain went right back to a 10. I could hardly function. Woke up each morning burning up and sweaty, painful urination, and the same old pain issues. I got back on Cipro a week ago and today have no pain.

I spoke with Dr. Antolak yesterday and he says there is no way I have an infection, and it is just the anti imflamatory aspect of the Cipro that provided the relief. He said I need surgery.

With my history I just can't understand this and my gut tells me he is wrong. The only problem is I can't live in pain, can't take cipro forever, and no other dr.s to work with. And now this cycle of cipro is giving me tendon pain, so I'm concerned about that...

Any opinions on this from anyone? Just go ahead with Antolak's surgery? I'm out of answers....

[acw]

With my history I just can't understand this and my gut tells me he is wrong.

Any opinions on this from anyone? Just go ahead with Antolak's surgery? I'm out of answers....

No one can make the decision for you, but I do think it's important to listen to your gut. Don't pursue anything you don't feel comfortable with. It's easy to become too desperate for an answer.

[REV800X]

Thanks ACW,

It just seems that I have dealt with this so long and I can't seem to get answers that make sense.

The whole notion that just two antibiotics (Cipro and Bactrim) can make the pain and all symptoms go completlely away, while other antibiotics do nothing just doesn't add up to Antolak's telling me it is just the anti inflamatory properites of antibiotics. I could get on my motorcycle and ride 300 miles right now, but if off of Cipro for 3 or 4 days I would almost throw up just looking at the bike due to the pain in the whole urinary tract, prostate included...

I just don't feel I have ever had a proper Urological exam. I think that is my goal first now before I even would consider PN surgery.

I'm just very frustrated as time keeps going by while I get older and older with no answers...

[Lernica]

REVBOX,

Could you have a mechanical compression of your urinary tract which makes it more prone to infection? Dr. Andrews in Cornwall treats chronic urinary tract infections by decompressing the urinary tract with shockwave therapy: https://sites.google.com/site/drkirkand ... s-protocol. I was treated for PN using this therapy.

[helenlegs 11]

HMMm, one of the symptoms of having PN or whatever little understood pelvic issue should read FRUSTRATION!! Think we are all with you there Rev.
I think tho' that you have answered your own question and having more urological tests will not do any harm and will put your mind at rest, allowing you to make better decisions about any future surgery. I guess if a Hollis Potter scan isn't feasible a trip to Cornwall would be almost impossible too. This is something that I am really interested in but like you the trip wouldn't be something I could contemplate at the moment.
The problem with this one is that here in the UK that Shock wave therapy is available just not for the pelvic area. Have you any idea if the Cornwall team are expanding or training other practitioners Lernica?
Don't know if you follow MotoGP Rev, but I have just had a tutorial from my bike obsessed husband about slipstreaming and Casey Stoner , just nodded off for a bit
Helen

[konedog4]

Rev,

What kind of surgery is Dr. Antolak recommending? PN surgery?

SInce your symptoms abate with antibiotics, it certainly sounds like you have an infection. Please get a work-up by the best urologist you can find. It is possible that you have a form of chronic prostatitis. Antibiotics can have an antiinflamatory effect, but I question whether the effect would be this dramatic that you feel "normal" after being on antibiotics. Get a work-up for a possible hernia too.

Surgery is a last resort option in my view. Go with your gut feeling. If surgery feels wrong, it is wrong for you at this time. Explore all other options first.

Please keep us posted...

kone