Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
I have been having pain in the rectal and tail bone numbness sense my hysterectomy. When I was in the hospital a couple of days after surgery I had no control over my bowels and the doctor just didn't seem to care now I don't go . I have tried everything had every test under the sun and know one can help me I ran across this site and I fit the systems to a tee almost. The bowels are the worse I have been on every laxative and nothing works I have been tell doctors i'm not constipated cause it's not hard I go everyday but don't empty all the way. Not to get to gross but it's left in the rectum so I do a warm water enema everyday I don't want to do stimulant laxatives cause i don't want to wreck my colon.
I had a MRI done it shows
L4-L5Mild bilateral facet joint Hypertrophy No focal disc herniation. Some mild right foraminal narrowing inferiorly.
L5-S1 mild degenerative irregularity of the facet joints. disc narrowing with possible fissure of the disc posteriorly. Loss of disc hieght at L5-S1 with a posterior annular fissure of the disc.
I also had a emg it showed
possible right side lumbar radiculopathy at the S1 level.
I just don't know with these results does that mean I have pudental nerve damage. I have been living with this for a year with no answers. I have doctors saying it's from the hysterectomy and some say it's from the chemotherapy cause I also had breast cancer.
If anyone can shed some light on this please any advise would help.
With those findings, I would suggest you 1st request a test called a DISCOGRAM.
I will try to explain best I can. The discs are "cushions" between the vertebrae. If the discs are intact, they allow enough space between the vertebrae for the nerve roots to come out of the spinal cord without being pinched or disrupted in any way. The discs have a gel-like substance inside, and if they begin to leak they can become what is called "insufficient". This mean, they are not doing their job in leaving sufficient spaces for the nerve roots. The leakage itself can also cause chemical changes effecting the nerve roots, not to mention the pinched space between the vertebrae can cause further chemical (PH) changes by impeding proper circulation in the area. The result is, right there where a nerve is coming out of the bottom of your spinal cord, it is being obstructed which can cause a problem in ANY nerve lower down, including pudendal.
Many people here have pudendal nerve entrapment, meaning their spinal cord and nerve roots are fine, but the nerve is stuck in scar tissue or within or between some other structures further down in the pelvis. But in these people, lumosacral MRI will be normal. With the findings you have, you should rule out the back as your primary problem, first.
A discogram is a test using contrast material, that will tell you just how leaky and insufficient those questionable discs are. If the discogram shows the discs are trashed, then a fusion in that area might be your answer. If the discogram shows the discs are OK, THEN look further down. There is a possibility that the back problems are beneign and have been there all along, but that the hysterectomy caused some scarring that did entrap the pudendal nerves further down in your pelvis. There are 2 imaging tests which have had some success in pinpointing pudendal entrapment within the pelvis - they are MRN and 3T Tesla MRI scan. If you look at the section MRN/MRI on this board, you will see we have beat the issue to death, about the relative value of each. These are specialized tests. Only Dr. Hollis Potter is doing the 3T scan for pudendal, and only the Neurography Institute (which has a few locations) is doing the MRN's which are all read by Dr. Filler in Santa Monica. But, the discogram is a common test which can be done locally.
I got pretty technical in my medical advice but just so's you know I am a patient not a Doctor, with no qualification to give medical advice! But this is good advice I think, I suggest bring it to a Doctor for discussion.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
I would also suggest that you get help asap with your constipation, this is very important or you can end up with long term problems.
The fact that you do not have hard stools does not mean that you are not constipated. You are aware that you aren't able to empty your bowels properly, this leads to constipation. Believe me, I've been in this situation. (I had a severe prolapse of the pelvic organs, and had pelvic reconstruction surgery to fix this - during this surgery, the pudendal nerve was injured, and here I am.)
Anyway, the prolapse meant that I was not able to empty my bowels properly. In fact I ended up in the emergency room with bowel obstruction - eventually the bowel just 'gave up' and stopped functioning. Each time I went, I had not been emptying the bowel properly, and things got backed up in a most unpleasant way. Once it was realised what was happening - this took an xray - I did get some help. But this is not a route that you want to go!
My best help was the nurse practitioner at my GP surgery. She suggested that I take Movicol, they use it on stroke wards and it can be taken long term. I needed between 3 and 12 sachets a day, until I had the big surgery. I believe that you are quite right not to want to take a bowel stimulant.
I have tried to get help no one will help me they have gave me milk of magnesia mirralax and tons of other stuff it doesn't work. So with what your seeing your dont think thats whats wrong with me
I'm not saying I don't think you're constipated - I'm saying that I do think you are constipated.
People usually interpret constipation to mean hard infrequent difficult bowel movements. However, if there is a problem where the bowel cannot physically work properly for some reason and does not empty properly, you can end up being constipated and yet still be going to the bathroom several times a day, with 'normal' bowel movements, ie not hard. I was in this situation when I had a severe prolapse of the pelvic organs. My bowel could not empty properly because of its position.
You say that you know that your bowel is not emptying properly - I am saying that you need to be careful in this situation because if it is not dealt with, you can end up very badly blocked up inside.
You are dealing with this using enemas - I'm sure you know that this is not a good idea long term. Enemas are not intended to replace normal bowel movements, and are not a good solution for long term constipation.
I was helped by taking Movicol, the US equivalent of this seems to be called Miralax. I needed a lot, usually they suggest between 1 and 3 doses a day - I needed between 3 and 12 doses a day. This was under medical supervision.
I do appreciate that you may have problems getting your doctor to take this seriously - in my case I ended up in the emergency room and they took an xray, after that, everyone believed me. But if you explain things carefully to your doctor, and specifically tell him that you are using enemas every day, and tell him how long you have been doing this - this may make a difference. I hope so!
