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Genital and Rectal Pain with Disc Herniation

Robert H.RRobert H. Posts: 3
edited 06/11/2012 - 8:52 AM in Chronic Pain
I have suffered with chronic genital and rectal pain for the last 10 years. The pain is severe burning in the rectum and testicles, along with stabbing and tearing pain in my penis. Two years ago I had a Pudendal Decompression surgery to relieve the pain. Since surgery the pain has returned. I recently had an MRI and it shows disc herniation at L4-5. My doctor is now telling me that having surgery to either remove the disk or fuse the vertebrae. I am scheduled to meet with the surgeon in 2 weeks. My question is, this is the first time anyone has suggested that the problem was in my back. Nothing I have read about Pudendal Nerve Entrapment or Pudendal Neuropathy suggest that a disc herniation could be the cause of the pain. Has anyone else heard of this? I have little to no back pain but I do have numbness and pain in my left hip.
Any help would be greatly appreciated.
Robert H.
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1

Comments

  • SavageSavage United StatesPosts: 4,784
    ...can mess with almost every area of our body.
    The pain is not always felt exactly on the spine or neck area...although often times it is.
    It's so very individual.
    Sounds like you're doing the right things...going to the docs and telling them everything that you are feeling.
    This site may have articles of info for you..or you may get info from reading the forums.
    Best of luck to you and keep in touch.

    moderator, ~~savage

  • alexhurtingaalexhurting Posts: 1,995
    edited 11/08/2014 - 3:54 AM
    I also had that for many years where pain will actualy shoot in to the rectum, i had my l4l5 removed and i still get it but not as often, You might want to look at the map of the nerves which i did and i realised i believe the nerve from above the l4l5 meaning more like the l3l4 when i looked is the nerve that travels to the rectum area, Its called the deramap or something like that that you can look at from what disc the nerves travel to where, That rectum pain is a EDITED trust me i know, I always had to lay down no mater where i was at when that comes on. Alex

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    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I've been looking at levator ani syndrome, I think it's what I've got. The recal pain is far more debilitating & painful than my numerous spine problems. I do have plenty of lumbar nerve root compressions.

    I also wonder if this pain, which does occassionally extend into my girl parts, is spine driven. No signs of letting up after 2 wks. I've only had one really bad spasm (I totally get why people hit the floor with that kind of pain).

    For now, it's like a really bad toothache in my behind.

    The pain is bad enough to push my various spine pains into the background a bit. It's impossible to concentrate with this going on.

    Hopefully, we'll both get good advice here.
  • Boy!! Am I happy to have stumbled across this one! Well..not happy but you guys know what I mean! I have vaginal and "bottom" issues as well. If this isn't too personal a question can I ask if any of you have issues having a bm? Loss of sensation to have one???
  • I was happy to see others having the same problems that I'm having. I've been off work for about a year with a work related injury. I have been having problems with both areas that you mentioned since the beginning. Who knew all this could be related.
    After having reviewed my MRI, I found out that I had a buldging herniated disc of the l4l5. I just had a microdisectomy about three weeks ago. I am still in alot of pain in the back, leg, foot and "other" areas. The doctor is happy with how everything went but said it will take some time for the nerve to heal since it was herniated for so long (10 months). I wish you the best of luck!
  • For all of you having bladder and rectal problems, if you are also experiencing an increase in pain levels, increasing or changing patterns of numbness , feel differently when wiping - loss of sensation or decreased sensation, difficulty initiating or keeping a flow of urine going, not being able to completely empty the bladder or bowels, this may be Cauda Equina Syndrome.
    If this is what is happening with you, you need to give your ortho or neuro spine surgeon a call immediately to be seen and evaluated for Cauda Equina Syndrome. It is a surgical emergency. Decompression should happen within 48 hours for the best chances of preventing permanent spinal nerve injury.
    Do a search on Cauda Equina Syndrome for more information.
    Do not wait and do not let embarrassment get in the way of telling your surgeon what is going on.

    Sandi who has Cauda Equina Syndrome for the 2nd time in 5 years.....and uses a wheelchair now.
  • daisy mae said:
    Boy!! Am I happy to have stumbled across this one! Well..not happy but you guys know what I mean! I have vaginal and "bottom" issues as well. If this isn't too personal a question can I ask if any of you have issues having a bm? Loss of sensation to have one???
    Daisy Mae,
    If you are having difficulty initiating or having a bowel movement, and you have increased or increasing numbness you need to give your surgeon a call first thing tomorrow morning and tell the person answering the phone what is happening and that you need to be seen today. Don't wait. The longer you wait the less likely that you will recover the sensation or the ability to initiate a bowel movement on your own without a lot of other things.
    The lumbar nerves innervate the bladder, bowels, muscles and sensory area from above the hips down. Depending upon which nerves are being effected by Cauda Equina Syndrome, it will effect everything, muscular and sensory, including your bladder or bowels or both from the level effected down....all the way to your toes.
    It can also cause paralysis if it is left untreated due to the damage to the muscle innervation.
    I can not urge you strongly enough to call your surgeon as soon as you get up in the morning and don't do any lifting, bending or twisting until you have been seen.....
    Sandi
    Symptoms of cauda equina syndrome include:

    •low back pain,
    •pain in one or both legs that starts in the buttocks and travels down the back of the thighs,
    •bladder and bowel problems (inability or difficulty urinating, incontinence, constipation),
    •weakness in the lower extremities and loss of sensations,
    •numbness in the groin area, and
    •reduced or absent lower extremity reflexes
  • Sandi..thank you for answering me! *I* have been begging these drs to help me. I KNOW for a fact I never had any issues with my bowels BEFORE the gyn surgery in 2009..the excat time my back *mysteriously* started as well. In my heart of hearts I know that there is a nerve being pinched or something baecause I have ZERO sensation to have a bm. The only time I can/do is when I have taken the citromag and the oral laxatives (which by the way is my daily regimen..from the gi) They have done a colonoscopy, endoscopy (oral) and all kinds of bloodwork. But here I am begging "listen..isn't it posssible that my back issues could be causing my bowle these issues since I have never in my life taken a laxative nevermind bottles of bowel prep to even produce a bm". They always say.."we'll have to wait and see". Wait? For what? My poor body to be permanentley ruined because their egos and innability to run a few tests?
    There MAY be some light at the end of my tunnel soon though..I go see a motility specialist in Toronto (5 hours away..oh my poor back will die) but I spoke with the tech on the phone who does the test. He said that the actual dr would be able to see through all the stuff they have tested for and perhaps get an mri with a contrast to see if my nerves down there are being damaged. I started crying when he said that. I have been begging for years! YEARS! And I even told the drs that that is what *I* felt happened. But of course..no one would listen to me. So now that it has gone on this long..I'm sure it means a life of harsh laxatives and bowel preps and or colostomy at some point. At 35..are you serious?
    Do you hear the frustration and anxiety in my typing?? I have literally BEGGED the drs here. Some will say "yeah that's a possibility but there is no test to proves it". Yes there is..ME! *I* am telling you damnit!Ugh
    *HUGS* thank you ...I hope and pray my may 11 visit will shed some positive light on my situation...
  • Daisy Mae,

    I'm worried about you too because of the loss of sensation. Is there a way you can be seen right away?

    I have the opposite problem, some BM pain but my bladder drives me insane. It's always been very irritable (no infection, recently tested), Vesicare didn't help much, so I don't take anything now.

    It's been horrible the last couple of days, I go to the bathroom to pee & two minutes later, have to go again.

    I just had a massive amount of bloodwork, so we can rule out diabetes.

    I've had enough & am seeing my GP today. Ugh. Not looking forward to what me may have to do to check me. Hopefully, no probing.

    I just finished PT with no improvement in my low back, tho the traction machine helped my neck.

    So it's probably time for a referral to a spine specialist.

    Edited to add:

    I get numbness in my tailbone, some pain in the groin area, maybe a bit of numbness. I always associate cauda equina with urinary retention, or loss of sensation, not with frequency.
  • Hi Sassy,
    I can totally relate to the urination issues. I void anywhere between 25-38 times a day! I have Interstitial Cystitis and it sounds to me like you may have it as well. Google it and see if any of the symptoms "fit" you.

    As for being seen right away? No..the neurosugeon is ATLEAST 1 years wait..isn't that horrendous? Well to be honest he is my 2nd opinion. The first neurosurgeon I seen was through the Er's pain clinic and he was just horrid!
    Firstly, he refused to believe that I hadn't been working on the line somewhere building cars. He said that my back was "way too old and aged for someone my age". I hadn't done anyhting repetitive or anything really strenuous but have 3 babies ;)
    Then he told me I need to cheer up. He had forbid me from lifting my kids up ( they were 1 and 2) and I started crying and asking "how can I not pick them up..I am at home all day alone with them while my husband is at work". His response.."It's not my problem to figure out, I tell people that everyday". I was floored. I had to make adjustments in my routine and around the house. BUt..I still have to wait.
    I did see a neurologist a few weeks back and he is sending me for an mri on my neck. He thinks I may have a cervical lesion...lovely. But I have to get the clearance from my cardiologist to be given a general anesthetic again. ( I HAVE to be put to sleep..I freak out).
    Seriously..google the ic and see if it sounds liek you and bring it up to your dr. I just started a new med (for my bladder)it's called Elmiron. So far so good. Literally only been 2 days so it's hard to say. I aslo JUST started taking Neurotin..so as you can guess I'm a hot mess!!! Rofl..like a drunken sailor..hehe.
    *Hugs* let me know how you make out!!!
  • Hi Ladies,
    BOTH of you need to be seen by a neurospinal surgeon or an orthospine surgeon and as soon as possible. The problem with getting CES ( Cauda Equina Syndrome) diagnosed is there is a lot of misconception about what constitutes CES and what doesn't. First, Daisy Mae, do not use laxatives every day......or if you must, use something like Miralax instead of what sounds like the others you are using currently and a stool softener like colace will also help.
    Sassy, urinary retention is also a sign of neurogenic bladder, which is a sign of CES. It is retention or loss of ability to hold your bladder. The effects on the bladder and bowel depend entirely on what level(s) of the lumbar spinal nerves that are compressed. One level may cause retention of bladder or bowel and another may cause loss of the sphincter control and leaking or complete loss of control of the bladder or bowels.
    I can not urge either one of you enough to be seen by the right doctor as soon as possible.
    Repeatedly having to go to the toilet and not being able to empty your bladder or bowels is just as bad as not being able to empty period.
    Sandi
  • Hi Sandi,
    Thank you. Unfortunately it is necessary that I take the harsh laxatives. I have done everything in the book..from benefiber to metemucil to lax a day and yes docusate sodium.
    I have been frantically telling everyone how this is no way to live and how very dangerous it is. The gi that I see and the one who had actually prescribed that i take the laxatives doesn't really know what's going on. He did the colonoscopy and the transit study and both were fine. He is baffled and that is why he is sending me to Toronto for the anal motility test. Personally I think it's a waste of time BUT i spoke with the tech who will be performing this test and he said that it's good I'm having it done because atleast they can rule out anything else. Later on the same day I see the motility dr and the tech suggested I type everything out and all the what/where's and when all this happened because even HE FEELS that it is my back! Imagine that! After me screaming and crying (literally) since Oct 09 I have begged them and pleaded to check to see what my back is doing to my bowles. They always seem to say that since I have "control and I'm not hving accidents" it's not tht bad. Suuuure. You take all this poison to even TRY to have a bm, then along with all the pain medications. Just last week I had to stop taking my iron pills (my iron is insanely low, 9) because I felt it was making things worse. When I seen my gyn he agreed for me to stop and see if my family dr will reconsider the injections instead.
    All the pelvic and bowel pain is going to cause me to prolapse again, I really fear that all the pressure and pain will undo all the work that was done.
    Thank you though for taking the time to answer the post :)
  • Since my fusion l4-5 in 1993 i leak front and back
    dr said my spinch muscle is weak no major accidents but after i go i leak for half the day constantly cleaning myself how do you fix this problem??stop eating ??they told me to take fiber to help but that did not help. Rick
  • Daisy,
    Can't you make an appointment with a spine neuro surgeon or an ortho spine surgeon along with seeing this motility doctor? There shouldn't be any reason that you can't. If I were you, I would scrap the motility doctor and find a qualified back surgeon and get in as soon as possible to see them.
    I am dealing with my second bout of Cauda Equina Syndrome as we speak but I know that if you call a reputable spine surgeon and tell them of the problems you are having, they will get you in.
    The only thing that I can suggest is taking more colace to help soften the stools and look into bowel care programs to see if they may help rather than the constant pushing and resulting prolapse.
    I hope you can find the right surgeon and get this taken care of.
    Sandi
  • Thanks for all of the responses, but I think some of what is being discussed would not be for me. :))) Since I am a guy. Although I am glad that some of you are getting some answers. I run a support group on Facebook for people who suffer from Pudendal Nerve Entrapment, Pudendal Neuropathy and Pudendal Neuralgia. There are many of us ho had the decompression surgery and are still suffering the same or increased levels of pain. My question is, have any of you ever been diagnosed with PNE or PN? Has anyone had the PNE or the disk herniation surgery and still suffer from genital/rectal pain? I just want to know what the chances are that the spine surgery will also result in no decrease in nerve pain since I have been suffering for over 11 years? Could the damage be irreversible?

    Thanks again for all of the earlier responses!!! I am so glad I found this site. :D
  • Hi Robert,
    Have you ever checked to see if there are any problems with your lumbar region of the spine? I don't know much about pudenal nerve entrapment so I may not be much help with that condition, however, have you seen a urologist who also is familiar with both pudenal nerve entrapment and CES? They can tell through the nerve testing that is done and the urological studies if it is one condition rather than the other.
    As far as the leaking is concerned, that sounds like a spinchter isn't closing all of the way. You may be able to help that by intermittent self cathing so remove any urine still in the bladder so that would help with the leaking problem.
    A pad also might be of use if all else fails.
    There are also male condom cath bags that some men who are spinal cord injured use to help with leaking.
    Sandi
  • As far as the nerve damage being permanent or not Robert, it depends on the extent of the nerve compression and the length of time. If it is simple nerve compression, surgery will help to relieve the compression, and time is the only thing that will tell whether or not the nerve will repair itself. The good news is that the pudenal nerve is part of the peripheral nerve system, so those nerves do tend to repair themselves over time. The nerves grow at the rate of 1 mm a month, so the length of the nerve, the extent of the damage will give you an approximation of the length of time it may take for the nerve to start to repair itself.
    Hope this helps,
    Sandi
  • thank you for the information....in jan2011 i had surgary on L4,L5 and S1...when i woke up i was numb on my left side.....bum, crotch, back of leg and all of my foot...i did pt for as long as i could handle it but my pain got worse....dr said he though the nerves were just imflamed....well as of last week, my right side of my bum and crotch is now starting to go numb and im having problems emptying my bladder. i called my neurosurgeon and after being in the hospital for 3 days with a catheter, they did a myelogram and then did steriod injections in my back only to come back and say they dont know what is wrong with me! but i was told i could go to the ER and have them put a catheter in to drain my bladder when needed. is there any advise to where i go next? thanks so much jess
  • Sandi,
    No I cannot just make an appt. to get in. NO matter what the issue is. IT will be atleast a years wait I have been told. This is back when I was totally unable to use my right arm...couldn't really care for my kids. They do not care and are too busy. Where I live there is such a huge shortage of drs. HUGE.
    And to get rid of the motility dr? NO. That is vital in the puzzle being solved. THanks though
  • Sandi,
    No I cannot just make an appt. to get in. NO matter what the issue is. IT will be atleast a years wait I have been told. This is back when I was totally unable to use my right arm...couldn't really care for my kids. They do not care and are too busy. Where I live there is such a huge shortage of drs. HUGE.
    And to get rid of the motility dr? NO. That is vital in the puzzle being solved. THanks though
  • Okay, I didn't realize that there was such a big problem with getting into seeing a back surgeon where you live. I can understand your reluctance to not seeing the motility doctor as far as the bowel issues go, but at the same time, if it is stemming from your back, there isn't going to be much that he can recommend if the problem is coming from your back and that is causing the bowel issues.
    I would still try to locate a reputable spine surgeon around you and attempt to make an appointment and then worry about how you will get there.
    Sandi
  • Is there a reason why you keep suggesting the IMPOSSIBLE here? I live in Canada, we have ohip. It doesn't work like how the u.s. does. Doesn't matter how much or how little money you have it's all in who's turn it is. That simple. And for me to say...try to go to Chicago or Detroit? WHO has the thousands of dollars to do that. Totally unrealistic and frankly it's tiring explaining this over and over.
    I am going to see the motility guy BECAUSE he will send me for an mri of the spine and see what's going on. The tech already said he *thinks* that is what my problem was based on what I've told him. He said after the motility test was done I see the dr and most likely will be sent on for the mri and such of my spine. And that is 5 hours away for me. So yes I'm willing to travel and I have barked up every tree and everyhting. Truth be told my back issues are NOT my only major health concerns..just one of them. I am very experienced with how these things work. And if I have already seen on neurosugeon and he was a tool...I'm waiting on the 2nd and yes it's a years wait or more. Welcome to Canada..wait wait wait.
  • There isn't any reason to be hostile Daisy. I was only trying to help you. I don't know where you live, having read hundreds of posts lately, trying to keep the locations straight is a bit daunting.
    Good luck in seeing the motility doctor. I hope that he is able to give you some assistance.
    We all have other health concerns, I was only trying to help but will back off now.
    Take care,
    Sandi
  • I'm sorry sandi, I didn't mean to sound hostile, not at all. I apologise. I know you are trying to help.
    I guess I'm getting frustrated and a bit panicky and snipped at you, I didn't mean to. Please accept my heartfelt apology.
    I hope the motility guy helps too. This is all nonsense. Considering *I* suggested that my back was the reason my bowels went bad. :(
    again, I am sorry. *hug*
  • The doctor that performed the PNE surgery is a urologist and only one of a hand full of doctors that recognize and treat PNE. I have had many, many test done to rule out any urological issues and I had a couple of nerve test done also. Pudendal Nerve Motor Latency Test (PNMLT) and also Diagnostic Block of the pudendal nerve. Both showed entrapment of the pudendal nerve. I just had an MRI of my spine and it shows some issues that my doctor feels needs to be seem by a spine surgeon.
    Chronic, complete spondylolysis bilaterally at L4 with degenerative disc disease at L4-5.
    Midline annular fissure and overlying, minimally cranially extending, midline to left paracentral, 1 to 2 mm disc herniation at L4-5.
    Mild bilateral chronic foraminal narrowing at L4-5 without ganglionic compromise.
    1 mm lytic anterolisthesis of L4 on L5.
  • Daisy Mae, I am also from Canada, different province, Alberta. I know with my Dr I have to sometimes print out what symptoms are and show them to my GP. He doesn't like it, however I have found that sometimes they over look things. I had cancer for 2 years and they didn't run any tests, even though I was seeing the specialists, they missed it for a long time, saying that I as too young (20).

    I understand the GP's not always being receptive (I have lucked out and found a diffent GP who really tries to help). I understand that you may not be able to find a different Dr, we also have a major shortage. I actually got help, with the cancer, from the ER. It took a couple of times, but eventually gave me a referral. With what is going on with you, I would think that they would do something, at least do an MRI ASAP.

    I also want to say that I understand that Dr's here don't tend to treat our pain, etc, like they should. We are limited as to who is taking new paitents (here none, which seems to be common). I understand the frustration. There is one PM DR here, for a population of about 100,000 people. The wait times are horrible.

    Hopefully you can get this looked at sooner rather than later.

    Megan
  • i get numbness in my genitals and rear end if i should make the mistake of sitting on something like a lounge dining chair or in some cars .its not so much painful but feels like the whole area has been anaesthetised !.as for using my wedding equipment ..that luxury went after the last operation as i no longer have any sensation in that area and funnily enough my sex drive is none existent {even if sex was a possibility i would be unable to move as one dose during sex due to the physical limitations of my body and constant pain .a new thing has happened regarding that area i don't have the urge to go to the toilet {rear end } and as for peeing it takes up to 5 minutes to get started ..its all down to permanently damaged nerves so my consultant tels me ..its NOT cauda equina syndrome on me any way
    t
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Hi Daisy mae- I fell -Feb 09-I have herniated L4-L5,L5-S1--so far only non-surgical therapies-including numerous epidurals,facet and SI joint injections--- To address your question-- When I re-herniated my disc several months after the first fall-I had some numbness in my groin area-the area between the urethra and rectum-luckily I didnt develop cauda eqina syndrome completely because I could still urinate/bm without difficulty- This is something thats weird to talk about--BUT, Now what I am left with is the inability to strain- that seems the best way to explain it- when you are going to the bathroom and you need to "bear dowN"- I cant really do that like I used too- and if I spend too much time on my feet,or over do-it exercising-I get a horrible pressure/pain in my rectum- almost feels like a hot poker is in my bottom-- Hate having to explain these symptoms to my doctor- but I know they are related to my back,since never had anything like this before my fall---
  • If you are having changes in how you are able to urinate or defecate, ( I know that no one likes to talk about these things- ME included), you need to be seen. Preferably by a spinal surgeon and if it is your bladder that is the issue- for females-a urogynecologist or a regular urologist and for males- a urologist are a MUST.
    There are tests that can be done, that will tell them whether or not, it is related to the nerves in your back or not.
    Doing nothing is dangerous, you can develop severe kidney infections or bladder infections if you are not emptying completely.
    Sandi
  • Hi my name is Patsy and I just stumbled on this site. I've had a problem with rectal leakage and my Dr. says it's not due to the rectocele that I have (I had a Defacography which was ruled negative) but is due to, nerves that run along each side of the rectum, not working due to my "bad back". I was in a motor vehicle accident in March of 2013. I had a slight problem before the mva but my back got much worse after the accident and so did the problem with leakage and complete loss of feeling through the day. I need to wear a pad at all times. Anyone out there have a similar problem. Thanks
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