Health Organization for Pudendal Education

So I started getting my symptoms when I became sexually active, so at age 16, I’m now 20. It started out with pains like UTI. The rank urge to urinate, the pain, etc. No tests came positive except like the rare few haha I could take antibiotics, they would help and I could carry on.

Fast forward to last summer. August. That is when my constant pain hit.. It’s a urethral burning and pain. It’s hard to pinpoint but I think it is the urethra. It feels like a hot poker just jabbed up there or something strange. It feels like 1/2" in and my vestibule is irritated as well. So hard to pinpoint exactly where the pain Is coming from! I can hold a large amount of urine, not have the normal “IC” urge … just the pain and burning and general discomfort which is driving me nuts.

I had a cystoscopy and they didn’t see anything. I go to physical therapy and was diagnosed with PFD. I’ve been going since nov 2012 and I can’t tell if it is helping my pain. I know my muscles down there can relax more but still not huge progress. They tell me my urethra is quite tight and shortened

My symptoms are: burning urethral (I think).. More pain after urination and bowel movements. Pain with sex more so after. I can’t wear jeans or tight bottoms, can’t work out much, can eat some possible “trigger” foods one day and the next day I try some my pain goes high up. I have pain 24/7. Sitting irritates me, sleeping is hard, etc. Usually after the second pee of my day my pain hits more so.

I just know I'm wanting to jump off a bridge! I'm on morphine for pain and a hyperthyroid med. (diagnosed may 2013)

Hi Hallows, welcome to HOPE.
Sorry to hear about the pain and problems you have suffered. From what you describe it is definitely a good idea to pursue a PN diagnosis, if only to rule it out, although your symptoms could well be due to PN.
Have you had a look on the home pages here? It gives a list of doctors and also physiotherapists who are PN aware. Hopefully there will be some one near you.
If the problem is being caused by the pudendal nerve it would be a good plan to get some medication that helps with nerve pain. The best combination is an anti depressant (no need to get a high dose, usually) and an anti seizure drug (this one often need titrating up to get a working formula. I take cymbalta and pregabalin/Lyrica for instance and they do help. It is a case of trial and error however to see what works individually.
There is info on medication and other treatments on the home page too.
I hope that you do get some good answers for your problems soon and more importantly some treatment that will help.

Good luck,
Helen

Urethral pain due to PN is possible but I would also go for cystoscopy with hydrodistension to rule out IC. When I 1st got IC my earliest misdiagnosis was "chronic urethritis" because the pain did refer to the urethra. Interestingly, one treatment I was given for that diagnosis was urethral dilation and I wonder if that is still used / ever effective for people with a true urethral issue.
When I was diagnosed with IC in the 1980's, cysto/hydro was the gold standard for IC diagnosis. The procedure is to distend the bladder with water during cystoscopy to see if pinpoint hemmorhage of the bladder wall occurs. Not to be confused with urine function tests, which also involves cystoscopy and addition of water to the bladder, but does not fill the bladder beyond capacity and stretch it. Cysto / hydro has been largely abandoned in favor of diagnosing IC as a symptom cluster (frequency / urgency / pain), but I think that does a disservice to patients who have an atypical presentation of symptoms. The criticism of cysto / hydro has been that it can provide false positive diagnosis because it seems if you overdistend any bladder far enough, even a healthy one, it can potentially pinpoint hemmorhage. To me though the common sense answer to this is that If they need to fill somebody to 1000cc's to elicit a reaction, it's probably a false positive. When I was diagnosed by cysto / hydro they initially could not fill my bladder to more than 150cc's, and after a second fill to 300cc's my entire bladder wall hemmorhaged. That is clearly not a false positive. Yet the test has been thrown out like a baby with bathwater in favor of a series of questions about how you feel - that is not really practicing medicine in my opinion. I think a cysto / hydro is worth getting as long as you only accept a positive result if hemmorhage is caused by distension to a low capacity.
At the very least I would suggest shopping for a knowledgeable Urologist and discussing the possibility of referred pain from the bladder. IC can be neurogenic in origin, but it can have other causes as well. So I think it needs to be ruled out before you pursue care of urethral pain on the assumption that it is nerve pain.

The pudendal nerve innervates the urethral sphincter. I've heard other PN patients describe the same symptoms you have but other things can cause the same symptoms so it's a matter of ruling out all of the possibilities one at a time.

Violet