Health Organization for Pudendal Education

I'll try to give the quick rundown and make it as concise as possible.

About a year and a half ago I was having minor urinary issues so my doctor prescribed a week of the antibiotic cipro to fix the problem (if I knew how strong it was I would have never taken it). After a few days of taking the pills I had major bloating/bowel problems, and I remember having a very large bowel movement with a lot of pain. Ever since then, i've had rectal pain, pain sitting down, trouble standing for long periods of time, and problems controlling my sphincter.

After a few months I had a colonoscopy and the only irregularity they found was an anal fissure. At that point I thought for sure this was the source of the pain, so I took stool softeners and nitroglycerin cream to heal the tear. A few months later I get an anoscopy and the doctor tells me everything looks fine and the fissure healed completely. The tear couldn't have been big in the first place because I barely bled at all. I've also seen a colorectal surgeon who can't find anything wrong.

So now i'm doubting that the fissure can be the source of the pain, and I'm worried that it could be some sort of nerve damage. I've had many sessions with a pelvic physiotherapist and the only thing she found odd is that I had basically no control of my sphincter muscle. She would insert a finger and ask me to clamp down on it and I couldn't do it, there was no strength whatsoever.

So here are the problems I have now 1.5 years later;

- 24/7 pain from the sphincter to the tailbone, somewhere in that range.
- Lots of pain near the tailbone when sitting
- incomplete bowel movements
- no ability to control my sphincter muscles
- increased pain upon lifting heavy objects
- sharp pains occasionally when moving my hip region around
- inability to stand for longer than an hour- my pelvic area starts to buckle like I can't support my own weight
- loss of sensation in sexual arousal. I can get erections but the pleasure is just not there.
- more pain in the rectum after ejaculation
- a feeling of rectal fullness

I haven't read much on PNE but I know a common cause is due to physically falling on that area, and that's not the case for me. However, one of the side effects of this antibiotic is nerve damage (although they don't specify what kind of nerve damage and where) so i'm worried that the antibiotics could have had some role in this. Could the tear from the fissure maybe made that area more susceptible to nerve damage?

Please let me know if you think this could have any relation to PNE. For now I will continue seeing colorectal surgeons but most so far have no idea what to do with me as they think I'm fine. In reality I've been bed-ridden for 1.5 years because I cannot sit or stand for any decent period of time.

I had the LIS surgery for an anal fissure and still have the rectal pain as well.

Keep up the softeners and best of luck! I have suffered with it for about 3.5 years now. I think it's probably bad habits of the pelvic floor muscles from surgery. After all the trauma they have learnt to stay spasmed in response to pain. I am going to try a Botox injection next to break the spasm cycle. I know how frustrating it is when you see all the specialists and they can do nothing for you.

Being male I tried the ciprofloxacin path as well. Urologist said there was the chance the infection I had from an anal abscess got into the prostate. Antibiotics seemed to reduce my pain levels when I am on them, but it always comes back when I finish the course.

Had a colonoscopy just done in February this year and got the all clear as well. Of course except for scar tissue from my previous surgeries.

Volans, have any of your physicians ordered an MRI of the lumbar/lumbosacral plexus, and pelvic area to make sure there is no obvious pathology causing your problems?

It can be very tricky figuring out whether loss of sensation and sphincter control is due to spinal radiculopathy, impingments of the sacral nerve roots, or a peripheral nerve problem. These are all possibilities that you may want to explore and have ruled out. Did your PT find any spinal or pelvic misalignments?

Violet

Violet M wrote:Volans, have any of your physicians ordered an MRI of the lumbar/lumbosacral plexus, and pelvic area to make sure there is no obvious pathology causing your problems?

I had a CT scan of my pelvic area to check for any abscess, but I don't know what else they scanned. They didn't report anything unusual.

Well, you would expect if there was any growth or tumor that it would most likely have shown up on the CT scan but most of the PNE docs typically order an MRI.

It seems like the side effects from Cipro would be more widespread instead of localized if you had nerve damage from it but I could be wrong.

http://www.rxlist.com/cipro-drug/warnin ... utions.htm

"Peripheral Neuropathy

Cases of sensory or sensorimotor axonal polyneuropathy affecting small and/or large axons resulting in paresthesias, hypoesthesias, dysesthesias and weakness have been reported in patients receiving fluoroquinolones, including ciprofloxacin. Symptoms may occur soon after initiation of CIPRO and may be irreversible. Ciprofloxacin should be discontinued immediately if the patient experiences symptoms of peripheral neuropathy including pain, burning, tingling, numbness, and/or weakness, or other alterations in sensations including light touch, pain, temperature, position sense and vibratory sensation."

It sounds like you were already having some symptoms before you took the Cipro so while it might have triggered a worsening of symptoms, maybe you already had something going on prior to taking it.

Good luck. I hope you can get this sorted out.

Violet

My pain has gotten much worse now. The pain is still near the back of the rectum/tailbone area and also in the lower back. But now my entire back is in pain as well.

I'm praying it's not PN because of how hard it is to fix. I don't have genital pain, perineal pain, pain in the thighs or anything like that. It's all concentrated in the rectum and lower back.

My doctor referred me to Dr. Allan Gordon but he said it usually takes 8 months to get an appointment. Until then he gave me Cymbalta to ease the pain. A week in I've found it does nothing other than make me nauseous.

I don't know how i'll last that long. I can't sit or stand, or lie on my back. The only thing I used to do was lie on my side but even now that is too painful. I just spend my entire day switching positions and pacing around the room.

Is it possible a lower back issue could be causing this pain?

Have you had an MRI of your lumbar sacral spine? Yes these symptoms could be nerve related but from your lumbar spine not necessary your pudendal nerve.

Patty wrote:Have you had an MRI of your lumbar sacral spine? Yes these symptoms could be nerve related but from your lumbar spine not necessary your pudendal nerve.

No MRI yet. Unfortunately the specialists i've seen had no interest in giving me one. My GP got me a referral to a neurologist who I'm hoping will give me an MRI, but it takes months to see this guy.

That's a shame that your physicians won't order an MRI for you. Have you been evaluated by a PT who specializes in the lower back and pelvis? There are some problems that might not even show up up on an MRI, that a good PT would be able to help you with, such as sacro iliac joint dysfunction, so it might be worth at least having an evaluation.

Violet

So FINALLY, I have an MRI scheduled in about a week. Just curious, when I sit or stand for long periods of time that is when my pain is the absolute worst. When I go in for my MRI, should I stress the nerve as much as possible right before the scan? Will the degree of pain i'm in determine the likelihood of the problem showing up on an MRI?