New here - could use any help / advice!

[monctra]

Sept 28, 2011

My Pudendal Story -

Hello my name is Monica and I am very new to the pudendal ordeal. I guess I am still very confused on a lot of issues and ended up here looking for more information. I will try to sum up my road to here (sorry if my story is a bit long) and I would appreciate any feedback from anyone -

My journey started in April 2010, when I started having what I thought was bladder issues and went to my OBGYN. He thought I had a bladder infection, which was not the case. He gave me a couple of different medicines to try to help with bladder spasms. After about a month of this he then referred me to a Urologist. Well trying to make somewhat a shorter story of this - after two different Urologists and a multitude of different tests and procedures I was told that I had Interstitial Cystitis Syndrome. I was started on something called “Bladder injections” and told to follow a special diet very strictly, which I did. As I am going thru this process I keep trying to explain how much pain I am feeling and that I feel what is being done is not helping. The Urologist then tells me that she feels I am having “pelvic floor dysfunction” along with the ICS and refers me on to a PT. Ok, so now I feel by some strange luck that what helped me get to where I needed to be. After my first visit with the PT - she was great - very caring and informative. After discussing my concerns of not feeling like I was making any improvements she gave me a Dr’s name in Houston, Tx of a Gyno/Urologist - now we are still thinking that I have ICS. Now fast forward a little bit…..do not have ICS - he referred my on to Dr Charles Popeney, Neurologist in Tx …..

First please let me say that I have no problems with Dr Popeney. The things he has done has given me great
relief - but feel that all things are not quite explained in full detail….

1st visit - completed a questionnaire and explained how I ended up there. Told short life history. Have worked the same desk job for 30 years, no type of accident / surgery that could pin point injury to pudendal nerve - Scheduled a second visit with a EMG/NCS test planned along with my first CT guided nerve block - with the plan that if I got any relief from this nerve block a second one would be done in 30 days.

2nd visit - March 2011 EMG/NCS test completed - do not understand results -
Summary reads - normal study. The RT distal motor pudendal latency was 1.1 ms and the LT was
2.2ms (NL<4MS) The RT BCR was 29ms and the LT was 30ms (NL <45ms) EMG WAS NL.

Had first CT guided nerve block at Memorial Herman Hosp in Houston Tx -
(seemed to make my symptoms worse at first then some relief)

Called and let Dr Popeney’s know that yes there was definitely come relief from the nerve block …so he scheduled 2nd one for April 2011.

Well I can say that I was very excited after receiving the 2nd one - I had complete relief (after the initial period of worsening) …..yes complete ….I was not experiencing any pain and felt like my old self for the first time in a year. My relief lasted for almost 5 months…..which when I called the Dr’s office was told that seemed very good and they would schedule another CT guided nerve block - Sept 23, 2011. Well today is Sept 28th and yes the block has started to give me more relief. I guess I am confused….is this what I will have to do for the REST OF MY LIFE??? …..continue getting nerve blocks periodically ….. When I asked the nurse this question it was answered as yes more than likely without any further explanations. …

Well that is my story of how I got here……now sorry but still have more questions…..SYMPTOMS???

I have read plenty of stories here and there on the internet and understand that everyone may vary in /symptoms. Here is what I experience and was wondering if they seem to fit in ….I seem to have what I guess is the “normal” symptoms…all of my pains seem to be in my vaginal area - pelvic floor and / or bladder area ….stabbing pain while sitting, driving, the urgency in urinations -pain seems to come on somewhat strong when my bladder fills and right after urinating, constipation also seems to be a problem when I am in what I call a “flare up”. Now I guess my most confusing symptom (which I have not run across on here ) is sometime getting extreme stabbing pains while I am walking??? This pain can catch me mid stride or once I get up from a sitting/laying position. They are very intense and cause me have to walk very, very slowly or even lay back down till stabbing pain subsides. And yet another really confusing one is …..this very same stabbing pain can wake me out of a dead sleep???

Again I am really sorry for making this so long….just trying to give as much information in order to receive any additional help along this very frustrating journey.

Thanks again
Monica

[carolynm]

Speaking only for myself, I think you should consider yourself lucky for having such great results. Many of us would give anything to have such relief from the pain for months!

good luck
cari

[helenlegs 11]

Hi Monica,
Welcome, seems you have found the right place for help. . . I would say everyone here will be able to identify with some or all of your symptoms. I get the stabbing electric shock pains often. It's just one of those nerve 'things' !! and yes they have woken me in the dead of night too ?? My worst was 3 and 1/2 hrs of them coming every 2-8 mins apart, as if I was in labour! I was almost mad with it.( I think this was due to muscle spasms , but guessing)
Usually they only come 1- 10 x per day depending on what I have done. So you are not alone there.
Luckily those zaps are over quickly, many people experience them more so after surgery so I tell myself that it is the nerve trying to heal or at least it is still alive just not functioning properly and sending duff signals. I usually manage to put a positive spin on things if possible.
It's such a good sign that the block worked for you and for SO long brilliant!
If there is no history of trauma/accident to cause PN and the block has worked so dramatically you may be lucky with conservative treatments to give you fantastic relief, maybe a cure.
I know there are a couple of people on here who have recently posted about physio + blocks and ESWT (shockwave ) helping them tremendously. What about medication btw?
Fingers crossed for you.
Helen

[monctra]

Thanks Carolynm and Helen for reading my story.

First to Carolynm ....yes your are correct and I should have stated that in my original post... After reading alot of the post associated with this site I due feel extremely grateful because I think that I am not near the condition of some people. But nonetheless, dealing with any type of pudendal problem is bad, confusing, frustrating, etc....

Helen thanks so much for the welcome....my pudendal problem did not result from trauma / accident - it seems to have almost happened over night.

I know the stabbing is excruciating at times ... part of my confusion is "Is it the nerve or is it the muscles??" I found this site trying to search myself for more infomation. I hope this does not sound bad....because I am pretty close to Houston Tx and it pretty easy for me to get there, while others have to travel far and wide to see someone who understands ....but I have had a couple of dr appointment with Dr Popeney, which did not give me very much detailed information on this matter. He performed an EMG - discussed the results pretty matter of factly and scheduled a CT nerve block - have had three to date. I am currently taking no daily meds...have a presciption of vicodine on hand for pain ...Dr Popeny did quickly discuss meds on first visit, but has never actually prescribed anything daily.

I am going to research this physio + blocks & ESWT ....have never heard of them.

Still trying to learn as much as I can.....thanks

[helenlegs 11]

I have been trying to find threads that may help to show what else may be available, this one is about pulsed radio frequency (no clue personally, have not tried it)
by ajirish1 » Tue May 03, 2011 5:27 pm

There is a post on one of the facebook pudendal pages..

http://www.facebook.com/group.php?gid=6 ... 388&v=wall

The girl had Pulsed Radio Frequency procedure at Stanford Pain Clinic in California and it has helped her significantly.

http://paincenter.stanford.edu/

You can read about the science of the procedure in this article

http://www.ncbi.nlm.nih.gov/pubmed/19461829

This one about prolopathy http://www.pudendalhope.org/forum/viewt ... f=36&t=361

shockwave http://www.pudendalhope.org/forum/viewt ... =17&t=2048

You may have read all of these but just in case they help. There are also posts on dry needling, acupuncture and hypnosis.

[birdlife]

Hi Monica,
I'm really happy for you that your blocks have worked so well , that's amazing . I doubt they would give you blocks for ever, your exposure to radiation doses would be very questionable! It could well be that the long periods of relief you're experiencing will calm the irritated pudendal nerve right the way down (hope so), but be aware that it may have a tendency to flare in the future if you do things like prolonged sitting or lifting heavy objects,etc.
But what I really wanted to ask is whereabouts are your extreme stabbing pains in the leg? Because if you mean at the front of the thighs (rather than the side and back which could be sciatic) then you've met a fellow sufferer! Well I used to be. In fact that was the first identifiable symptom I had, sharp stabbing pains like a knife in the thighs - even when sitting - and when they were bad I walked slower and slower too. I was REALLY worried at the time, even phoned my husband and asked him to pick me up in the car because I could hardly walk. My GP couldn't explain it, so I was forced to investigate. If this is the same as you you will be (relatively!) pleased to know that I found the pain was muscular in origin, and after much triggerpoint massage on various muscles in my thighs (I could do this myself, free!) I don't get those sharp pains any more. My doc did give me muscle relaxants (Baclofen) which helped a bit but it was the massaging away of the triggerpoints (knots of waste material) in my muscles that solved that problem. Whether my pelvic floor tightness originally caused a knock-on effect in the legs, I'll never know. But whenever I get tight muscles, as they are at the moment after a flare of PN due to intensive gardening, I know that the same massage will sort me out. AND I dont need another pill for that! I can tell you girl that I slept properly for the first time in 2 years.
Wish you luck, message me if you want any further info - I don't mind!
Take care,

[birdlife]

PS. Monica,
Try this now, place a hand either side of the front of your thighs with thumbs extended. Don't push downwards with your thumbs, push forward firmly in one direction only - moving the skin underneath forwards with your thumbs, then release. Forwards and release again, gradually pushing a little deeper as you go. Does it hurt when you do that? Like hell? If so, you have triggerpoints in your muscles ...

[Violet M]

Hi Monica,

Welcome to the forum. It can be pretty confusing when you are first diagnosed with PN. Stabbing pains are a common complaint with pudendal neuralgia. The article published by the Nantes team states that people with pudendal nerve entrapment typically are not awakened in the night but I was an exception to that.

About nerve blocks -- after 7 years of reading the forum I'm having a hard time remembering anyone who was cured from them. Some people get temporary relief and some get worse from them but we rarely hear of anyone cured. Many of the PNE docs will only give you a series of 3 before recommending surgery. I've not heard of anyone getting them for the rest of their life.

Before going the surgery route most people try physical therapy from a PT specially trained in treating pudendal neuralgia. Some people have significant improvement from PT -- enough to where they do not want to pursue surgery since surgery has some risks involved. You can check out the list of PT's from the link on the homepage.

Good luck!

Violet

[birdlife]

Monica, thanks for your PM explaining the whereabouts of your sharp stabbing pains. Sorry I misinterpreted - duh! . But hope the info I sent you re. working the adductor magnus might prove useful for pt work, as it can be an external culprit for sharp explosions of pain internally. And did that other link work for you, to check the different radiation doses for different blocks? Good luck,