I should also comment I was misdiagnosed and treated for prostatitis for one year and IC for eight years.
Dr Mathur,
I thought I would give you an update since your diagnosis was correct! When I had forwarded your response to my wife she responded with "what kind of advice do you think you could get on the internet?" My pain management doctor said he could not treat this pain (which was close to being unmanageable still with the fentanyl patches and Percocet) and to go to UCLA. So, made appointments with their management doctor, an elder Urologist with many years of experience and the head of neurological surgery all in one day. They came up with the same diagnosis you did and it was suggested I didn't need surgery. Since then I have had 4 pudendal nerve blocks, 3 steroid epidural injections in L4 and L5 and S1, 2 ganglion impar injections, steroidal caudal injections, and a pulsed radio frequency procedure. Days before I was going to test out the electrical stimulation implant, the pain reduced and I canceled the procedure.
I have been on my back for 23 hours a day as sitting was no option and even standing was extremely painful. The pain has reduced 50% but this was at a point where I was consistently at 8, 9 and sometimes 10, and this is being conservative. I fought going to the ER many times. My point in all this is, the more we read about the Pudendal nerve issues the more it became apparent you had it right from the beginning. Now, the only thing left is how to treat the pain,good days and bad, but not enough for the electrical stimulation implant. Any ideas? I understand opiates do not work well on nerve pain. Our FDA is owned by big pharma so any other alternative advice to reduce pain is appreciated. Many blessings to you!
Since it is difficult to get around much and all my doctor appointment are not till the end of June, based on my MRI results, are there any stretching or exercises I could do rather than laying around on a couch typing into a putor?
no, my pain mgmt guy does not even beleive that there is a relationship between the results of my MRI and what I was diagnosed with, intersitstial cystitis. I have read a lot lately about the connection but he wouldnt even look at my MRI results and said he see's those all the time. I tried to explain, but, he got agitated and I had to bite my toungue.
Does your dr have you on anything for nerve pain? Even though yours are not pinched they are still getting pressed on and can cause pain just as bad as getting pinched. I take personally take Valium for nerve pain but there are several different meds out there. Also TENS units work well at times for the pain and EMS help with the muscle and circulation. Best wishes, I hope you can get relief soon. Sissie
I have to take Percocet and have fentanyl patches just to feel a little normal. They don't take all the pain away, never have.
Dr Mathur,
Strange as it sounds, this is almost a relief to have this horrible pain somewhat validated, I had been getting bladder installations for 3 years and can stop that. Your response gave me something to hang on to as my neurosurgeon (a good reputation) can't see me till for 6 weeks. My pain doc does not want to give me any stronger meds, so, having some insights will help me get through what will be a VERY long 6 weeks. Is there anything one can say to the front office that can give my file higher status? He supposedly reviewed my file and put me the "not urgent" category. I do not suggest any misrepresentation, just want to have them understand my pain level.
Warm regards!
Hi!
I can only think of one condition that can link low back pain and perineal pain with prostatitis. This is pudendal nerve entrapment. Pain is worsened by sitting, and there is a sense of a foreign object (constant urge to urinate) in the urethra. Prostatitis-like urogenital pain and urination problems are the hallmark of pudendal neuropathy. Diagnosis is by diagnostic block, MRI, CT scan, and Pudendal Nerve Motor Latency Test (PNMLT). Maybe you can discuss this with your urologist or even a neurologist can help you out with this.
Also, your MRI findings will also be responsible for similar pain. Hope this helps. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
Dr Mathur,
Thank you for your kind response and advice. Could my spine problems mimic the symptoms of prostatitis and IC? I was diagnosed with prostatitis five years ago, three years ago a cystoscopy confirmed(?) Interstitial Cystitis. Pain has increased every year, every year I need stronger pain meds, including Percocet and fentanyl patches now to have any quality of life. Four weeks ago, I had what I thought was an IC pain flare up, my new urologist suggested a spine MRI when I told him I have no feeling in feet and it recently started extending up to below my knee. He is suspecting my prostatitis and IC issue could be the result of pressure on my spine. I am hoping there is a connection as I have been in constant pain for 5 years. I would so appreciate your opinion, Is there a chance the pressure could cause perineal and low back pain? Kind regards.
Hi!
I can understand your apprehensions. Generally multiple joint involvement, disc bulges and other problems are managed conservatively. The treatment is a combination of pain killers, muscle relaxants, physiotherapy, manual therapy, hydrotherapy, and exercise. Most people respond to this. You could wear a lumbo-scaral corset while you are up and about. This will keep the spine straight and lessen the pain. Do discuss this with your doctor. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.