Please can you help.

[Marcus40]

Hello
Tonight I feel at my lowest. I have had this burning anal pain last two years. Doctors aren't sure what it is. Had every test available. Doctors don't think it is pudendal but haven't given me alternate diagnosis. Came on after anal fissure which healed. I am sat here alone tonight, my family and children are away. I cannot take pain med but feel desperate. I cannot take this level of pain anymore. I love my children so much but this is too much for me. I am not a weak man but tonight I feel I must have an end to this pain.

[Violet M]

Hello Marcus,

First I want to tell you that you are not alone. Many of us have experienced the same desperate low feeling that you have right now and we are here to help if we can.

Can you tell us a little more about what tests you have had and what treatments you have tried? Do pain medications make you sick or is your doctor refusing to order them? Sometimes when you think you've tried everything, you find out from another patient that there are still options available so please don't give up yet. Also, if we know what country you live in we might have a better idea of where help might be available.

Take care,

Violet

[Marcus40]

Thank you violet. I have seen seven Specialist doctors. One said pudendal, most said not because pain came on following fissure but fissure healed over a year ago. Have had a pointless sphincterotomy and four botox treatments. Last botox gave some temp relief but now the pain is back. I had cfs many years so intol to pain med. I want an explanation, a diagnosis and more than anything a relief from pain. Feel completely helpless with no way to turn. I am spent. Nothing left to fight this emotionally. Pain with no relief is torture, am sure my family and children would one day understand.

[Violet M]

Marcus, I don't understand how they can say it is not pudendal just because the pain came on following an anal fissure. One of the diagnostic criteria for possible PN is a history of surgery in the pelvic region and it seems that an anal fissure would most certainly be in the vicinity of the anal sphincter which is innervated by the pudendal nerve.

I saw many specialists who had no idea what was wrong with me and gave me an incorrect diagnosis. It was not until I saw a physical therapist who was specially trained in treating pudendal neuralgia and one of the pudendal nerve doctors listed on our website that I had a proper diagnosis. Many people are getting valuable input on a diagnosis with the 3T MRI from Dr. Hollis Potter in NYC.

There are new drugs out specifically for treating neuropathic pain such as cymbalta or lyrica that you would not be likely to develop a tolerance to. You can read through the medication section of the forum for ideas but also maybe a pain doc would be able to help you find a drug you are not tolerant to that you could use temporarily until you had a proper diagnosis.

[carolynm]

Marcus,
Please, please believe me when I say we have all felt in your same place. I am myself trying to get pain under control but also have children who I try to stay alive for. They need you, Marcus, to teach them how to make the world a better place. Where do you live? USA?

keep taking pain meds and let us help you figure out your next step.

cari

[Marcus40]

Thanks cari

Feels nice to know I am ain't alone with this. Pain does crazy things with rational thinking. My children are my life, I want to live a long and happy life with them by my side. Just so tough when in this pain. Just read nantes criteria for pudendal and I apply to each one although am unsure what 'no objective sensory impairment' means?

What's your story?

I am in uk.

Marcus

[Violet M]

Marcus, I think it means there is typically pain but no loss of sensation if something touches you. For instance if you touch the anal area with your finger you can probably feel it -- unlike diabetics who lose sensation in their feet and can't feel it when something touches their feet. I don't know if they have some way of objectively measuring this -- I think Dr. Dellon and Antolak may do some type of sensory testing.

Here is their expanded explanation of what they mean by objective sensory impairment:

Pain With No Objective Sensory Impairment
This is an essential clinical finding. The presence of a
superficial perineal sensory deficit is highly suggestive of a
sacral nerve root lesion, particularly involving the cauda
equina nerve roots, or a sacral plexus lesion. These proximal
lesions usually do not cause pain and present clinically with
sensorimotor deficits, especially sensory loss and sphincter
motor disorders. Several hypotheses can be proposed to
explain this absence of objective sensory impairment. The
compression may be insufficient to induce a lesion of the
fibers of superficial sensation, as observed in the case of
sciatica and many cases of carpal tunnel syndrome. It may
also have an anatomical explanation, as several anatomical
territories overlap at this level: the territory of the pudendal
nerve, the territory of the posterior femoral cutaneous nerve
and its inferior cluneal branches, and the territories of nerves
arising from the first lumbar

[Marcus40]

Thankyou violet, that is really helpful. Can I put you on spot and ask your opinion pls. I have read some of your many helpful & insightful posts on here and you appear more knowledgable than most doctors I have met, your story is also a positive one which aim pleased to hear. Here are pros and cons as I see them.

For pudendal. -
Anal pain
Worse when sitting
Doesn't awaken
Burn/ ache
2 yrs

Against -
only anal pain not any other area
Dr greenslade(uk expert) pressed key pudendal areas with no pain - he said 90 percent certain not.
Started after Anal fissure
Prev colo consultant thinks hypersensitivity??

Uncertain-
Urine frequency stopped after latest botox
Told very tight pelvic muscles after botox to pelvic procedure
Occasional constipation
Worse when stressed

[carolynm]

Marcus,

There are branches of the pudendal nerve...I need to learn about them myself. Maybe that would make more sense...affecting the anal area mostly?? The others on here may know more about this....

cari

[janetm2]

Marcus,
I feel your despair trying to live with pain is awful. I was just feeling enough with the 20+ years of chronic foot pain and then I got Pudendal Nerve Entrapment and off/on pain from 2003? Summer months of pain 2007, 2008, and then more frequent constant since end of June 2010. Hoping to fully recover from surgery in May 2011. Maybe more than you needed but mypudendal pain is really anal with some pelvic muscle spasms prior. I was strictly seeing colon-rectal specialist not gynecologist because I did not have vaginal pain. It seems you could be a Pudendal candidate not that it is a good thing but you need to find out what is wrong so you can get relief. I am no expert but the pudendal nerve goes anal so I am not sure why you need more than one of the three branches to have a pudendal nreve problem. Hopefully Violet or HerMajesty or the other experts can help sort this out or point you to the U.K. professionals. Hang in there for your children and yourself.
Janet