In January of this year I started to have urinary frequency along with a sharp pain in what I thought was the right side of my bladder. The pain was very localized. I could mark the area with a pen. No urinary tract infection, so they thought interstitial cystitis. I had a CT Urogram (unnecessary, cost $2K), pelvic sonogram, many urinalysis, an in office cystoscopy. All were totally clean. The urologist claimed I had "trace" amounts of blood in my urine. No one but him found micro hematuria. To my eternal regret I allowed them to perform
a hydrodistension under general anesthesia in July. I didn't know it at the time (because the urologist never told me), but my bladder was distended THREE times while I was "knocked out." The test is not recommended by the American Urological Association for diagnosing IC. The IC Treatment Algorithym published by the American Urological Association (you know, the ones who board certify urologists) in 1/11/2011 and published on their website, clearly says that hydrodistension under general anesthestic should NEVER be used to diagnose IC. By the way, the hydrodistension showed my bladder was clean as a whistle. After the hydro, the urologist walked out of the OR and didn't talk to me in the recovery room. I called him trying to get a diagnosis and he would leave voice mail messages like "95% of people with IC have glomuruations. You don't have glomurations." At some point after the hydro I noticed my anus was numb, like an athletic sock was stuffed up it. The numbness came and went. Then the genitals became numb and tingly. A part of my right leg (the same side as my bladder pain) became and remains numb to the touch. Sometimes the entire right cheek of my buttocks became numb. I became sexually aroused for no reason (no snickering, this is really awful)....
Then about 3 weeks ago the tingling and numbness became the worst pain imaginable. I suffered classic migraines for most of my life (w/ aura) and am no stranger to pain. Burning, like a cattle prod or electrical chord. I had a lumbar MRI which was totally non-significant (no cauda equina). Then I spent another 2 weeks in total agony waiting for the neuro appointment, literally rolling on the floor with heating pads trying to sleep. I noticed the pain went away completely if I stood up. I felt better lying on my back and pulling my knees up to my chest. Sitting in certain positions was better than lying down but worse than standing. My former primary care doctor refused to answer my calls for help, just sending a message through her minions that I should go to an emergency room. A doctor friend prescribed some fentanyl patches-50 mg./hr and 75 mg./hr. The pain broke through the fentanyl patches!!!
Finally, I saw the neurologist who told me that my horrible pain was damage to "my nerves" caused by the hydrodistension. I don't think she knew at the time that it had been performed three times. She said the initial pain was really neurological, not urological, as the pain was in only a very localized part of my pelvis. She said that some neurological problems can masquerade as IC. I am now on Lyrica [100 mg. 3 times a day], which has (after a very rough start) succeeded in calming the nerves. Today is the first day I am free from pain, though still suffering some strange sensations, heart pounding, thyroid throbbing, intestines gurgling, etc, but no pain.
Does this sound like damage to the pudendal nerve caused by trauma (the hydrodistension done three times)?
Interstitial cystitis is also diagnosed by exclusion. I spent $14,000 of my own money on "tests" for excluding bladder cancer, stones, etc. I already had an EMG test on my leg ($829) which showed nothing as they couldn't locate the nerve. My neuro wants me to have a pelvic MRI with and without contrast. I am afraid that once again I am going down a very expensive road of tests which show nothing just to exclude various other causes of this pain. I have no insurance.
Finally, I have some symptoms which are weird to me, never having experienced this type of pain. My heart starts racing and my thyroid starts throbbing before the actual pain begins. I can tell it's coming by the heart throbbing. My intestines then get in on the act, gurgling away like mad, and I start passing gas. My lips start tingling and air comes out of my throat. (No, my head doesn't spin...) Originally, the pain was worst at night. Now that the Lyrica has calmed things down, I still get the attacks, heart pounding, thyroid throbbing, intestines gurgling, genitals throbbing-but no pain. It seems like the area of numbness in my right leg is decreasing ..... I feel pain in the area. Does anyone know what's going on? Are these symptoms the body's response to pain??? Is this the autonomic nervous system running amok???? I am well educated but not an MD.
Finally, the neuro said that the damage done to me by the hydro would heal by itself in 6 months. She didn't even do a exam of my pelvis. I did give her a very detailed description of my botched IC treatment, the onset of the neuro problems after the hydro and subsequent pain horror show, but how does she know that the pain will resolve itself? Six months is bad, but now that the pain is gone, I could tolerate it. I still feel weird and hardly able to function, essentially bed ridden and terrified of the pain, now that I know that a 75 mg/hr fentanyl patch is ineffective. Driving is difficult and I am as usual afraid of a pain attack. This has made leaving my house virtually impossible. I went to a social event and had to leave after an hour and a half because the chair was killing me.... I am becoming a recluse.
Any thoughts????
I am glad to have found this group. I used to lurk in the Interstitial Cystitis support group, but felt I never really belonged.
I never had the problems they have with eating or drinking things. They were the ones who told me to go to a neurologist when I told them of the numbness. None of them had this numbness. I was also told by the information officer for the Intertsitial Cystitis Association that they had never heard of this horrible outcome of a hydrodistension and they have heard of thousands of them.
. I don't think I can add anything to the above advice. Getting appropriate treatment is the key, whether this is through getting the correct medical diagnosis from one of the doctors listed on the home pages and receiving subsequent treatment advised by them or if you are lucky enough to live near a good physio who can treat PN, wonderful. The conservative route is always the first to try but it has to be with someone who is PN aware.
In each case there was water leakage, so they coudln't put the camera in. Then, they decided to use a different catheter and the water didn't leak. The hydros showed nothing. So, I started out with pudendal neuralgia in the beginning and the three hydros greatly exacerbated the problem.