Health Organization for Pudendal Education

Hi

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.

Hello Fluffersmom,

Is that you holding Fluffer in the picture? How cute! You and Birdlife, another bird lover on the forum, should hit if off quite nicely.

I am so sorry for what you have been through. There are some PN patients who have had generalized autonomic nervous system problems along with their other symptoms but I can't say for sure if that's what you are experiencing. Is there any chance you are having side effects from some medication?

I've not heard of anyone getting PN from a bladder hydrodistension but it seems like it could be entirely possible since they would be working in the area of the pudendal nerve.

If you are going to have a pelvic MRI and you are paying for it yourself it would only make sense to go to the pudendal MRI expert, Dr. Hollis Potter in NYC. It may cost you a bit more with travel, etc. but from what the patients who have gone to her are saying it would be well worth the extra cost.

In the meantime, it might be worth it to check out the list of physical therapists who treat PN and at least have an evaluation from one of them.

There are quite a few of us who have had persistent genital arousal syndrome and believe me, none of us are snickering. You may want to read this thread http://www.pudendalhope.info/forum/view ... =48&t=1590.

Hopefully you will find some info on this forum that will be helpful to you.

Best regards,

Violet M

Yes Your Story Rings a Bell.
Just as a quick note to Violet: I've been working on rewriting my story with a more detailed chronological description of what I went through. It's part of a larger project that I am working on. At it's completion I will let you know and if you'd like I will send it to you for review. If you feel it can further the cause to help others please feel free to replace the old with the new. As for this post in reply to Fluffersmom I would like to copy and paste this short excerpt as it may help her to feel a bit better about what she went thru:

My story starts mid 1999 as pain seemingly out of nowhere appeared on both sides deep within my buttocks. My marathon into drug induced oblivion and unrelenting pain began with my local urologist. He was sure it was IC (intersitial cystitis) that was causing the pain I was feeling. Keep in mind that in 1999 PNE wasn’t on any doctor’s radar in the U.S. other then the pioneering work of Dr. Antolak up at the Mayo Clinic. Dr. Renney’s clinic was still in the future. So what did I know? Initially as my journey began, in my naïve state, I trusted and believed in my local doctor. He suggested, and I consented, to a cystoscopy with hydrodistention of the bladder. It was explained to me that this procedure would actually be therapeutic in nature helping me to feel better. I went in to this procedure with a pain level of about a 5 popping aspirin on a daily basis like they were candy while still working at my regular job. After my urologist distended my bladder I woke-up with an accelerated pain level that was something I never experienced before – close to an 8 maybe a 9– still not knowing that a pain level of 10+ was in my future. Afterwards, according to my local urologist I was indeed diagnosed with IC as he explained that Hunner’s Ulcers were evident. But, the pain level was something he had never seen before in an IC patient. For the life of him, my urologist could not understand why I didn’t feel better after he distended my bladder. I was prescribed Percocet, which was completely useless, not even scratching the surface of pain I was in. I remember so clearly that I was literally beside myself with pain not knowing what to do or where to turn. No one else in my family knew what to do either. How could a life, normal just a few months back, change so quick to a state that brought on a true feeling of hopelessness and helplessness? I had no idea where or who to turn to and so I continued to call my urologist’s office explaining to who ever would listen about the intense pain I was in. Fortunately, my urologist had a colleague who was a pain doctor. I remember thinking that I didn’t even know there were pain doctors. This was also to be my introduction to hard narcotics - and so began my path – my upward climb in terms of milligrams of Oxycontin......to be continued...

Hi Fluffersmom,
From your story I think you have found a forum where you will indeed fit In. Welcome . 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.
Speaking personally I think I wouldn't shell out the amount for a Hollis Potter scan at the moment, unless you try physio and it really doesn't suit you or there is no one near who can help. The next stage would usually be a diagnostic/treatment guided injection. It is an unfortunate situation that where you are situated and how much you can afford to spend on treatment and travel has a lot to do with how things progress.
I am so sorry that you have had to go through the things that you have described, unnecessarily too it seems. I hope that with the help you find on this site and the people here that your problems can be sorted out and sooner rather than later.
Take care
Helen

Fluffersmom,

I'm really sorry to hear about your post-op complications. I know nothing about hydrodistentions (sp?) but your burning symptoms do sound like nerve damage. Does it hurt to sit down? Pudendal neuralgia patients find it very hard to sit down, as the pudendal nerve is the major nerve of the perineum.

If indeed you have a damaged pudendal nerve you have certainly found the right place to obtain information and support. As you (may have) have discovered, PN is a painful and disabling condition, but with the right treatment and medications, it can be managed. Some of our members have even been successfully treated through surgery, although having additional surgery is no doubt the furthest thing from your mind at the moment!

Please take your time reading through this website and through the forum threads that seem most pertinent to your condition. There is a "search" feature on the upper right hand corner of this page if you want to find a particular subject and see what has been said on the forum about it.

Again, welcome to the club, Fluffersmom. To be sure, It is a mixed blessing to join us. Although you might have this disabling condition, at least you know that you are not alone! Please feel free to ask any questions here that would help you in making your treatment decisions.

Warm wishes for less painful days ahead of you.

Larry, thanks for posting additional details of your story, including the hydrodistension part of it. We can change your story that's posted on the website if you want. Hopefully what you went through will help shed some light on Fluffersmom's situation.

Thank you all so much for your responses.

FYI, a hydrodistension of the bladder is when they knock you out (general anesthesia) insert water and blow up the bladder as large as it can get. (For people with advanced confirmed Interstitial Cystitis the bladder can become necrotic and it's important to measure how big the bladder is. Necrotic bladders are the end stage of the disease. In my case, I wasn't even diagnosed with IC). The size of my bladder was totally normal. They they put a scope up the blown up bladder and look around for cancers, etc.

In may case they blew up my bladder three times. It appears they had some water leakage but just ignored it and blew it up to full capacity twice. 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.

I wasn't supposed to have the hydro at all, according to the American Urological Association's treatment/diagnosis protocols. You don't put someone under general anesthetic and risk perforating the bladder for someone who only has microhematuria. The uro totally ignored the fact that the pain was only on one side of the bladder. I also had other indications that I didn't have IC, including the abilityt eat/drink anything with no pain.

That's the problem, because pelvic nerve problems are so under recognised, any problem HAS to be something else. . . and when it's not, unnecessary procedures are often suggested and performed. Neurologists don't 'do' gynae problems and urologists and gynaecologists don't want to touch nerves so it is up to the few surgeons who have recognised pelvic nerve problems DO exist and us to spread the word. Hopefully this type of thing will happen less and less. I was offered a spinal fusion for instance, which I thankfully declined.
What do you think you will do now fluffersmom?

Follow up:

I saw a general neurologist who said that the damage to my pelvic/spinal nerve (she never said pudendal nerve) would "go away" after 6 months on a low dose of Lyrica. I had nerve conduction tests and pelvic and spinal MRI's which showed some age-related degeneration, but nothing to cause the amount of pain I was in.

A month ago I saw Dr. Richard Marvel a self described "pelvic pain specialist." He diagnosed me with pudendal neuralgia just on the basis of symptoms and history [blowing up of bladder 3x].He did not do an unguided nerve block. He left me at the high dose of Lyrica. He also prescribed 50 mg. noritryptiline, as well as physical therapy to loosen up the right side of my pelvic myofascia, which is tight and painful, probably pressing on the pudendal nerve. He also prescribed a series of up to 6 CT guided nerve blocks by Dr. Richard at the U of MD. The first one is this coming Friday.

I am feeling much better on my 900 mg/day Lyrica, but am still experiencing tingling, twisting of anus and labia minora, right side, so there's obviously still a problem. I am hoping that 3 of the CT guided nerve blocks will do the job, but am worried about SIX.

Bathsheba, I wish you luck with your nerve blocks. I would be leery of 6 too, especially knowing that some people have had bad reactions to the steroid with worsening of symptoms and that Dr. Dellon has concerns about steroids damaging nerves. The typical protocol is 3 but I know there are docs who give more. Just follow your instincts and don't be talked into something if you really don't want to do.

Take care,

Violet