New Person with Pudendal Nerve Disorder

[kathyd]

Hi Kone
Thx so much for telling me your inspirational story.
It's wonderful to hear and gives me hope!
I am a believer too.
I was very impressed by your story of Angela.
I do believe that prayer helps in our recovery.
Thx also for the info about clonazepam. Thankfully
I seemed to have tolerated it well over the years I've
used it for sleep so it sounds like an option to consider
for daytime pain.( preferable to having this pain pump in
my body (Which we may soon be removing )and other useless
opiates-. ie a dilaudid rectal suppository which Ive become
tolerant to over time, so it doesn't provide muchrelief, just constipating etc.
I have to go to physical therapy now but will add more later.
Thx so much also for the prayers!
I really appreciate that and I do believe that prayers
and faith that positive things will happen, (faith which
must admit I've lost at times due to pain etc)
do help in our healing.
Thanks again !
and will finish my reply later.
Kathy

[konedog4]

Kathy, I said a prayer for you and my friend Dom today at lunchtime. Will keep you in my prayers. The clonazepam dose that I take is minimal, 1/2 mg, but it seems to relax my perineum sufficiently that it just about takes all my discomfort away. I don't like to take it, but I don't like to be in chronic pain either, so I do. It has no real analgesic effect, it is actually an antiseizure and antianxiety med, but it seems to relax me where I need to be relaxed. It has also helped my bladder not be so reactive. God bless.

kone

[konedog4]

Two weeks and a day after the Alcock's Canal injection, I see no positive benefit.

[Violet M]

Sorry, Kone. I'm sure that much be frustrating. I never had any long-lasting improvement from nerve blocks and actually had a worsening of symptoms for awhile. Are you seeing any improvements at all with a decrease in activity levels?

Violet

[kathyd]

Thank You Kone for the prayers!
I really appreciate it .
I have a new medication protocol I may be starting soon, as well as continuing a new PT protocol..
The prayer helps me to feel more optimistic.

I stay as active as possible, getting out on my own and driving locally when I can, and trying to stay positive as I look towards the new year!

Excuse me if I'm repeating myself, but my PT feels that severe muscles spasms in both my anal and vaginal sphincters are causing my pain. It makes sense as I have emptied my bladder dysfunctionally, by pushing gently for many years, in order to get the feeling of relief. It seems reasonable that the latter could've caused the eventual spasms and worsening pain as years went by. My intense fear...after all the research I've done, has added to the clenching and tightness. I now often take a break from "reading" about it, and it helps a bit.
Time will tell.
Thx also for telling me how you take the Clonazepam.. That is an option I also want to consider with my pain doc if necessary.

I hope you are continuing to feel better. You mentioned the nerve block wearing off.. I understand your disappointment. For whatever reason, nerve blocks were not the solution for me.
I do hope you feel better and will certainly keep you in my prayers as well!!
Thx again, and blessings to you!
Kathy

[konedog4]

After a very vigorous week of stretching, my flare has ended and I feel quite good again. My lesson to learn from this is that stretching daily is a key to keep me feeling good. I know this is not true for others, in fact, stretching makes them worse, but, this works for me. I am impinged/damaged on my right side and continue to weigh the option of returning to Canada for an intensive three days of shockwave on my right side. kone.

[kathyd]

Hi Konedog,
I am so glad to hear you are doing well!
Its also good to hear that stretching helps you. My PT, who has been treating me for the past few months is the most knowledeable one Ive had.
She recommends stretching for me, also. I am a bit afraid to do it, based on things Ive read online, but I trust her and have to go by her findings and experience.
She has found many trigger points in the anal area where I have so much pain. She can re-produce the pain by pressing on the areas. She says the painful areas do not involve the PN and that I don't have PN, but instead a severe anal spasm due to tightness in the area.
My root cause I think is over 30 years of dysfunctional voiding ,(pushing on my belly and trying to empty every last bit of urine out. If I get up and still feel an urge, i would go back and keep pushing.) Its a very bad habit..and it is still hard for me to break, as i feel that "full bladder" feeling at times.
She says, that ignoring it will eventually re-train the bladder.. easier said than done! I also unconsciously clench that area, and have to catch myself and remember to 'drop' that area.
Hopefully her PT work can help to release these painful trigger points. I have a home program also, but right now the pain is too intense for me to do the PT on myself as its flares me...not something I can take at this moment.
I am thankful to have found her. She comes highly recommended by some sources I trust, and I can tell by working with her that she knows her stuff.
My pain so severe, I still worry a lot tho... which is also a big part of things for me!
I would appreciate any prayers folks could offer for the pain to calm down soon and for me to have faith that it will..Thats so important!
I am so glad to hear that you are doing well! Keep us posted
Take care,
Kathy

[Alan1646]

I've been wondering why drugs such as clonazepam help some people with Pudendal Neuralgia. I find that valium really helps the pain a lot and that when I take 5mg I can tolerate sitting much better. This is , I know , a very controversial idea but, as such drugs don't have an effect on pain , could it be that they work because of their psychological effect?
What I mean is that if PN is in fact a "mindbody" condition, could it be that these drugs temporarily stop the pain because they act psychologically? When I woke up from sedation with Midazolam I had zero pain for a short while until it wore off a bit.

Just wondering ...

[kathyd]

Hi Alan,
What type of sitting pain do you have... burning or throbbing for ex..
Mine is throbboing...occurs on contact with sitting and lasts long after I get up.
I can't speak for other people's cases but I feel with me that drugs that work on the psychological part can help.
I take Clonepin at night for sleep--its effective and have considered trying it for daytime to help me sit. as I know my pain is at the very least exacerbated by FEAR ... and other emotions as well.
Being fearful tightens muscles and thus increases my pain... My issue are a bit different than true PN but symptoms are similar in that I can't sit..
My sit pain is throbbing in nature.

I have come to believe that mind body issues are a big part of pain for me...It took me years to really believe this could be true, but now I have begun to think so, and have starting working on it.
I also have wondered about whether taking simpler drugs like Clonepin (instead of string opiates which are hard to go up on due to side effects (constipation etc ) would be a better solution for pain..I will mention this to pain doc.. as another possibility.
Thx for posting.

[kathyd]

Sorry For typos... I meant strong opiates, not "string opiates".
Thx