pudendal & falling

[dale]

hi. I fell on to my tailbone/back at work 18 months ago and ever since then I have had a wide range of symptoms appearing over a range of time . I have seen the professor in Sydney and he recommends Botox injections for pudendal irritation?. one of the issues I have is that when I don't catheterize regularly due to the fact I do not get any messages to pee its when this time get a very strong saddle irritation ie pins and needles/spasms and some times I fall as if my leg collapses. the powers to be ie insurance company don't believe it happens. once when going over I dislocated my finger and they just don't believe me. does any one else have events where when walking you get pain etc like me. I have to cath every 4-6 hrs on advice of my urologist to try and keep thing normal when I can as some times there are issues.

my symptoms have been wide and varied. I have erections with out wanting them. incontinence issues both bladder and bowel, saddle numbness and pain, sciatica both legs, pain in feet, lower back pain in general. not able to walk any fair distance anymore. not able to sleep, laying down causes erections that can last up to 20 hrs hence the bladder gets extended to the point I cant move. when using the caths to pee they some times don't want to go in past the sphincter which can be frustrating. constipation is a bad side effect also that just makes the day more unpleasant as once again I do not get signals to use my bowels as with the bladder issue. so will Botox work as I am very scared that I will end up with problem that wont go away as 18 months is enough to put up with. once the leagel eagles get their act together and let me get treatment hope fully I will be a better person to be around.

regards dale

[rick]

Dale,

I fell on my left buttock in June 2005. Fairly soon thereafter, a few days, I had a burning sensation on the outside of my left leg, about even with my pelvis. Within a month I began to have pain in my penis, scrotum. I was unable to sit for more than perhaps 15 minutes the pain intense enough that I had to stand up. I had a feeling that I had a golf ball in my rectum.

It took me months to find help from knowledgeable people, not MD's. In the most part medical professionals didn't have a clue.

There are people who have a deeper understanding of what may be the cause or causes of what you are experiencing. Many are on this site. I want to urge you to develop as deep an understanding of the possible causes as you are able.

Also, find an individual, possibly not a close family member and not a medical professional to talk to, help ground you.
Someone who is outside the box you are in. Who, as they say, does not have an ax to grind.

Take control of your pain, only you can determine the right medical course for you to follow.

Members of the helping professions for the most part, want to help you get better. Most MD's etc. truly want to help you. Will offer you something they think will make you feel better. They don't have a clue.

My mantra, for over 9 years has been nothing invasive. An MD in California told me that most treatments will a good chance of hurting you not helping you. The odds will be against you, negative not positive. A minus not a plus.

Try to find a successful surgical outcome. They are few. Where are the statistics that really support surgery?
How many have been helped by physical therapy? Where is the data?

I have managed my pain, not complete as I would wish. I am more active than most 68 year old men. Through medication and taking care what I do physically. But I am active I drive, take care of my grand children. I am remodeling my house. I do the physical work.

Take control, learn as much as you are able. Keep a skeptical eye on anything offered.

Try to be as well as you can be. Take charge.

Rick

[dale]

Rick, thanks for the reply. i have been contacted by the insurance company only today stating that if i want any treatment that i have to go to the tribunal for a hearing which will decide on treatment options etc. i just hope that there is some professional that understands what the symptoms are relating to this curse. While this is frustrating that this is to happen as at the moment i am experiencing a different pain that i never had before i.e. feels like r/testicle and scrotum are on fire at the moment. also in the past it has felt like i have a calculator size item stuck in side by butt very weird sensation. i take on board what you say, as every person i tell about the problem are mesmerized that this can happen and just say hang in there it should come right.
i am seeing a pt who is a specialist in pelvic floor etc and she has had another male like me two years earlier who went and got treatment i.e. Botox and a intense physio follow up and the results were very favourable. i cannot go more than 6-8 hrs without peeing or catheterising as the saddle area acts up- which is a pain when trying to sit as well as stand, as these both aggravate the condition which seem to make me fall as if my legs don want to work.

currently i cannot work as work are quoting "we have an obligation to you, not to let you hurt yourself while at work" the problem is it happens anywhere which they say i have no comeback on. the fact i was hurt at work is a problem, Medicare as well as my private insurance don't want to treat it without a ruling on the condition. i.e. workers comp etc.

i want to take control of my pain, but i have been told that if i take ownership of the condition that no medical support will be given unless there is exceptional conditions to show it is a practical and correct procedure.

i live in Hobart Tasmania and there is no specialists willing to put a scenario together on treatment apart from my physio. and here physios are not seen to be giving medical opinions that matter.

i will try and find someone to talk to that's outside the bubble i am in at the moment.
i am trying to stay active but it is hard due to the issues that are changing but as they say "what doesn't kill you only makes you stronger".

Anyway i appreciate the reply and hopefully i can get my head around all this.
regards dale

[ladybird]

Hi Dale,

Have you read Soula's webpage called www.pudendalnerve.com.au?

She is dealing with WorkCover and is very knowledgable about this area, it's problems and limitations.

She lives in Melbourne so it would be good for you to connect with her as she is Australian, has PN from sitting on an office ball and it popped so it was at work.

Btw - I am gaining so much from your posts.....thankyou for being so honest about your situation and what solutions you are looking for. It is helping me think through solutions for myself.

Let me know how you go with Soula. x

[JackieOUCH]

Hi Dale-

I'm so sorry you have to deal with this.

I believe I had a congenital predisposition to this problem, but it was most certainly exacerbated by a very bad fall. Over the course of 6 months after the fall I developed many of the symptoms you described, and also very severe pain in the sacral area. I couldn't even ride in a car as going over bumps in the road were incredibly painful.

I've also had several bad falls over the past couple years. My right leg just "gives out" and I go down. No warning whatsoever. The last fall was particularly bad. I hit my head so hard on a wall, thought I was going to pass out, but things settled down after a few weeks.

Thought I might have a few ideas or tips to help you.

1) Stop doing ANYTHING that aggravates the pain. Sometimes it is not obvious what makes the pain worse, as the pain may not get worse until the day after you do the offending activity.

Things to avoid: Stairs, lifting, twisting, pushing or pulling anything heavy (doors), squatting, bending at the waist (get one of those gripper things at the drug store), try not to sit too long....

2) If a doctor recommends an antidepressant, don't be insulted! Antidepressants can seriously help with pain.

3) Try to avoid a pudendal nerve block. They have not worked for anyone, and have made quite a few people worse.

4) If physical therapy is too painful, don't continue it.

Overall, I guess the main idea here is avoidance. Sometimes the nerve can heal if it is allowed to heal, and now is the most important time for you.

I wish you all the best and if you have anything else I can help you with, just let me know.

Jackie OUCH

[Violet M]

Hi Dale,

Just wondering if you had lumbar, lumbosacral plexus, and pelvic MRI's and whether they showed anything. That seems like it would be really important since you had an injury. Has your hip been evaluated for a femoral acetabular impingement or labral tear? These can be associated with pelvic pain. You can do a search on Lernica's posts on the forum for more info on that topic.

I agree with the others that invasive treatments aren't always the answer although in my own experience surgery is what eventually pulled me out of severe pain and gave me back my life. Surgery is definitely a last resort though and you want to be really certain of a diagnosis before you go into surgery.

From what I've heard from other patients over the years, Botox has mixed reviews. I've known a few people who got worse long-term, most likely due to a sensitivity/reaction from it, but that is not typical. Typically it relaxes the pelvic floor for several months but isn't generally considered to be a long-term solution. If your pelvic floor is in severe spasm, Botox might help temporarily relieve some of the pain/symptoms while you are in the process of trying to figure out the root cause of the problem.

Hopefully your insurance will come through and they will allow you to have the diagnostic tests you need to really figure out what is going on and then have the treatments you need.

Best,

Violet

[dale]

hi all, thanks for the replies. I finally went to hospital for my epidural last week which took 2 days to get in and out, since then i have just been to depressed to get on with everything else around me.
the epidural has certainly helped with my sciatica but it really has stirred up the pudendal issues. since coming home I have had a lot of groin pain, along with testicular, anal, back and inner thigh pain.
having re seen the neuro surgeon he has advised me to keep cathing 4 hrly as the bladder has been quite extended. while in hospital I passed 650 mls of urine in a bottle which took approx 10 mins to void, after this they did a residual test with a ultrasound meter and I still had 520mls in the bladder. this is a problem for people that have my issues as I am now continually having pain when I cath due to mini infections. this is very frustrating at the moment as it makes me cringe if I have to catheterise rather than going normal. it really is a problem not being able to sense when needing to go to the loo.
I had another fall two days ago while getting into my car, this time the right leg just gave way as I was swinging the left leg under the steering wheel, bloody frustrating.
earlier today i had an episode of both bladder and bowel erupting at the same time from saddle/buttock spasms I was having. I was sitting in my recliner at the time and I couldn't get to the loo in time as there just was no notice it was going to happen. I was luckily as I was by myself which saved the embarrassment of me being there with 4 ladies in the house getting ready to go for a walk with the wife just 20 mins earlier.
spoke to the urologist today after the event above and he is considering fitting me with a colostomy bag if this keeps happening. apparently this is something that he has done before with another patient until they actually resolve why it keeps happening. seeing that botox has been recommended by WHRIA he did not seem overly positive that this was the best course of action. he seemed to indicate that it could only be a stop gap fix and that I might have to look at a stimulator to be fitted so that I can regulate thru the device to go to the loo. he seemed to think it would be a better long term option. to me they both seem extreme but i can't survive the way it is at the moment and i can't get any doctor here in Hobart to certify me to go back to work. do stimulators work?
jackie i agree with you if you try to do too much, it's as if you get punished for wanting to be normal. violet i had another mri taken here in Hobart on saturday but it only showed a bulging disc at l5/s1 which is probably not helping with the sciatica. the facet blocks are on the agenda again as he seems to think that there is a bit of pathology there that might improve with the injections.
it would be interesting to get feedback from the forum on who else falls, cannot regulate toilet habbits, have phantom pains etc, just so we who suffer are able to get an appreciation of the bigger picture. i myself am petrified after today that this what i am going to look forward to for a while which leaves me with stress headaches i kid you not. i have read on a few sites and ladybird i have been on soula's site and once again the positivity is something that you have to admire. while i am a fairly strong person myself i am finding that i am getting depressed that i can't be there for my family like i was prior to all this happening, even though i was involved in another incident 8 years ago it slowed me down, but this pudendal issue has hit me for six as i just can't see a easy fix without surgeries etc.
i am meditating a lot at the moment as i am having a lot of trouble sleeping, if i lie down pain in the lower back saddle area and if i sit pain in the lower back saddle area. i suffer with shoulder and neck issues which have kept me from laying down since 2006 properly hence the recliner is now getting hard to even use at the moment. once again thanks to the people who have taken the time to reply, it is nice to know that there are a few caring souls out there that give me a bit of hope and an interest to follow.
dale

[Violet M]

Dale, that is a really tough time you are having right now. It seems like you might be having more symptoms than just pudendal related issues -- with your leg giving out from under you, but not much showing up on the MRI. You might ask your docs if they definitively ruled out cauda equina syndrome and arachnoiditis.

Not sure what type of neuromodulation your physician is recommending -- sacral or direct pudendal nerve. Some people have gotten some relief from neuromodulation, but I think it's important to research the different options available. There are different approaches for having the leads implanted. Remember that if you have the neuromodulation leads implanted, you will not be able to have MRI's afterwards. So you may want to make sure you get the 3TMRI with the best resolution of all areas of the pelvis and spine and have cauda equina and arachnoiditis ruled out, before going the neurostimulator route.

You may also want to ask how they are going to administer the Botox if you try it -- whether it would be given into the bladder or into the pelvic floor muscles. I know a guy with some symptoms similar to yours who had Botox into the bladder and it just made things worse. Botox into the pelvic floor muscles might be worth a try if your pelvic floor muscles are in spasm. One way to find out if this could be effective would be to have injections of bupivocaine into the muscles first to see if that brings relief. This is a relatively inexpensive short acting drug with not many side effects. If it is effective in relieving your pain, then there is a good chance that Botox into those muscles would help. You could read more about this in Dr. Noor Gajraj's article on Botox. Keep in mind that Botox relaxes the muscle and can actually have the side effect of causing incontinence but it sounds like since you are already having incontinence, the overriding factor right now would be to relieve the pain and spasms. Botox typically only lasts a few months but when you are in a lot of pain, a few months of relief is worth it.

The fact that you are having unwanted erections when lying down (meaning the problem is positional) makes you wonder whether there is some sort of nerve entrapment. If you have unwanted sexual arousal with these erections, that is a condition called persistent genital arousal disorder (PGAD). You can read more about it here. http://www.pudendalhope.info/sites/defa ... ne2013.pdf My PGAD was worse when lying down.

Keep your courage up and remember that eventually most people find some type of therapy that brings relief and allows them to enjoy life again.

Take care,

Violet

[bikelover]

Hi Violet, could you put the link to Dr. Noor Gajraj's article on botox?

[Violet M]

Here it is. http://www.pudendalhope.info/sites/defa ... Gajraj.pdf