NEW MEMBER - Strong urge to urinate, but can't

[Carolyn]

I am a new member. I will introduce myself tomorrow, w hen I am not so miserable. I have a strong, painful urge, almost like a spasm, to urinate. But I cannot, and end up frustrated and in tears. This has been an issue for about 2 years. It seems to have a reached a new level of pain. I cannot get to sleep. I'd really like to know if this is a common occurrence, and if so, what to do about it. Thanks so much.

[Dave]

Have you been evaluated by a urologist? Urinary conditions such as interstitial cystitis are common with PN.

[Violet M]

Hi Carolyn,

The pudendal nerve innervates the bladder sphincter so frequently PN patients complain of the feeling of constantly needing to urinate even when their bladder is empty. Straining with urination is another one of the symptoms of pudendal neuralgia.

I don't know what therapies you've already tried. There are medications that can help but sometimes it's a matter of trial and error figuring out which ones work for you. Many people find tricyclic antidepressants or SSRI antidepressants helpful with this particular symptom. If you have any burning, drugs like gabapentin or lyrica might be helpful. Drugs like clonazepam can help you sleep. Of course drugs only mask symptoms so you may want to pursue other treatments too. If your pelvic floor is in spasm there are certain types of physical therapy that might be helpful.

Violet

[HerMajesty]

I had interstitial cystitis alone for 20 years before I started showing other signs of PN, and eventually I got neurogenic bladder with the PN. You could have either or both; they both can originate with the pelvic nerves.
Interstitial cystitis is identified by doing a cystoscopy with hydrodistension (filling the bladder with water while watching through a cystoscope) - the evidence is that this causes "pinpoint hemorrhages" on the bladder wall: Interstitial cystitis is a defect in the bladder wall. Ulceration of the bladder wall might also be present. If you have IC alone, you are likely to have a false urge to urinate do to bladder pain and spasm, while the bladder is actually empty.
With Neurogenic Bladder, the mechanical behavior of the bladder is abnormal because of abnormal nerve conduction. The Urologist determines this through Urodynamic Testing. The bladder is also looked at with a cystoscope and water is also put in, but you are asked to urinate the water back out into a special toilet which gives information such as strength of urinary stream and whether your bladder is able to completely empty. If you have neurogenic bladder, it might be that your bladder does not only "feel" full and unable to empty: You might in fact be unable to fully empty your bladder, or to start a urine stream when your bladder is full. The bladder might also spasm which intensifies the feeling of urgency.
When I had interstitial cystitis alone, I self-managed. I drank a very large amount of water and held my urine as long as I could stand before voiding. The bladder distension stopped the bladder spasms: That is, if I could get enough water in me and hold it long enough so that I was urinating a strong stream instead of a trickle, the urgency to urinate did not immediately recur like it did if I had urgency on an almost empty bladder and dribbled urine. I drink so much water that my urine is very dilute and so I never had to make dietary changes; but FYI the interstitial cystitis bladder is very sensitive to acidic urine. You might improve by cutting out acidic food and drinks (citrus fruit, juice, coffee, tomatoes, etc).
My neurogenic bladder responded very well and very quickly to pelvic floor physical therapy (see list of PT's on this site). In the long term if you have other pudendal neuropathy symptoms, the source of all the nerve issues has to be addressed; but PT was a great way for me to reverse my neurogenic bladder issues enough so that I could function while seeking other care for neuropathy.
BTW if you are particularly miserable at the moment, you should be checked for a bladder infection. If you are truly feeling an inability to empty your bladder, the excess residual urine stagnates and becomes a breeding ground for bacteria; so many flare-ups of bladder symptoms are really treatable infections.
Also, if you do have IC, be alert to the fact that some meds will exacerbate your problems and these vary person to person. For example I have heard of some people getting relief from IC from Cymbalta, but my bladder was very unhappy when I tried cymbalta and other SSRI's. My bladder also reacts badly to pyridium (Uristat), which is supposed to help stop bladder pain. While you might need meds if you are experiencing other neuropathies, for the bladder self care and PT have always made a big difference to me, and no medication ever helped.

[helenlegs 11]

Hi Carolyn,
Welcome . As mentioned the can be a few reasons behind this particular symptom, one of the being PN of course. I would imagine that you have been checked out for urinary infection etc ?
If you could let us know a little more about yourself and maybe how your problems started??
Hope we can help, looking forward to knowing a bit more about you, chin up.
Take care,
Helen

[Carolyn]

A huge thank you for all the supprt and the knowledge in your replies. And a big shout out to Violet, who walked me through the re-registering process. Violet, Thank You so much. I have been a patient of Dr. Hibner's for over 2 years, and have had 4 botox injections and pudendal nerve blocks. I have also been seeing Loretta, a physical therapist who is connected to Dr. Hibner's practice, for 2 years on a weekly basis. Loretta is my anchor, my physical therapist, and my emotional support. She is unbelievable, and I think she hides her angel wings quite well. Before I saw Dr. Hibner, I spent a year with this pain, being treated for yeast infections and UTI's and atrophic vaginitis, none of which helped. Few tests done, just a doctor who wrote scrips based on my symptoms. Finally self-diagnosed, and went to a specialist gyn. in vulvodynia who had me on Elavil, Desipramine, and Lyyrica.The side effects were terrible, and my new internist stopped them when he saw me the first time. I told her I was sure I had a urinary tract infection, and she said I didn't. No test. A few days later I was admitted to the hospital with septicemia from a urinary infection that got into my bloodstream. I passed out at home, and my husband called 911. The neurologist at the hospital said it was the worst case the hospital had ever had.I was in the hospital for a week. She quit her practice to spend more time with her kids. I had to wait 7 mos. to see Dr. Hibner. I am seeing him again on Oct. 18 this year, one month from now; and will ask him about IC. I currently am on the Fentanyl Patch and oxycodone.

Last night, after a good day, I had to cath myself before bedtime. I have only had to do this 3 times. The pain sometimes stops for a few days, then comes roaring back. Once I was pain free for a week. There are times when I think I cannot keep on like this, but my husband is such a wonderful man and great support that I get over it.

Thanks again for the replies. I have no one else to talk to about this. Not exactly dinner party conversation.
Carrie

[carolynm]

Have3 you tried valium? If you have PFD your pelvic floor4 is in spasm and it isw difficult to urinate. This could be a simple fix.

[helenlegs 11]

Hi again Carolyn,
Did any of the blocks work?
Where were the botox shots targeting? Pelvic floor? and again any sucess with that treatment.
I have never suffered from this particular problem (thankfully) it must be absolutely maddening having the urge to wee (almost) constantly. Of course the fact that the bladder isn't functioning as it should then can cause the infections you mention, as it can not empty fully either, or at all sometimes .
I have heard a blog radio talk show with Dr Hibner and have read some of his papers and have been really impressed by his commitment to trying to solve the PN problems. One day the rest will understand, although I think it will have to be up to the rest of the world to take it on as the UK seem to want to fob sufferers off in general, especially the NHS.
What are you hoping for with Dr Hibner this visit? Loretta does sound great, have heard that about her before.
take care,
Helen

[Violet M]

Carrie, what do Dr. Hibner and Loretta think? I'm assuming Botox helped since you had it 4 times and PT must be helping since you are continuing it. What about the nerve blocks - did they help?

Violet