Some Questions - Appreciate every advice

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Some Questions - Appreciate every advice

Postby PleaseHelp » Tue Mar 21, 2017 2:11 pm

Hello helpful community !

I'm sorry that i post again a new topic and ask a lot since I'm here but I'm really desperate by now... and loosing hope more day by day..
My actual health status: I can do everything when i don't sit and have nearly no pain. I have no urinate problems or genital pain or problems. The symptom what i got most is that uncomfortable prickling..
The pain gets only more when i sit on my pelvic - but it isn't so much that i have to stop sitting or cant handle that pain. (constant pain / kribbling level is about 4 in a scale of 1-10)

Medication I got: Gabapentin 3600mg/day and Saroten raise now to 80mg - but Saroten is only for the Chronic pain so i don't have to hope for healing through Saroten, right? :/

I see a lot people here with Opioids, and some people changed the Opioids over the time and I rarely found people who said - I'm pain free through Opioids .. I don't get that - maybe it's a stupid example but you can put a Elephant to sleep or other big animals when you give them enough Opioids... So it should be possible to get a human pain free with some medicaments .. I always thought when nothing will help i will get Opioids and take them over my life, just to be pain free.. but it sounds like it isn't that easy ... At the moment i don't get any pain killers

Since i got my diagnosis (11 month ago) it went about 50 % better or even more... But now there is a "stop" since 3,4 months and i don't know what to do to recover fully.. I think everybody here knows that nerves heal extreme slowly - so it's possible that nerves need 1-2 years to recover fully .. So is there maybe a chance that i only have to wait because it already healed over 50% since i got my diagnosis?

I didn't try anything like physically therapy - PN is not cheap, all my doctors and things like acupuncture (which don't help i think) are expensive..
But is it worth give it a try - and if, what would you recommend me? Pohl therapy or Rolfing therapy? - There are only 2 people here who practice Pohl and one of them didn't answer me. Is the Rolfing therapy as good as the Pohl therapy?

Last question is about infiltration: A few people here said it really helps but they need to do it a few times.. and then there are people who said it gives them the last "boost" to get back to full health! My neurologist said these are the people who react before good to medicaments and already got a healing process (for a lot of people here nothing helped before infiltration or operation). So maybe it could be the last "boost" for me too?
By the way i got the specialized Doctor Bodner here in my area (some people say he is one of the best and known worldwide and people come from far away)

Thanks for your answers meanwhile!
PleaseHelp
 
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Re: Some Questions - Appreciate every advice

Postby Buttercup28 » Tue Mar 21, 2017 4:28 pm

Hi,

I think you need to really try physical therapy, but you need to see a pelvic floor physical therapist, not just any physical therapist. You may find your most help with physical therapy. For example, your tailbone could be jammed and causing all of the prickling. And I'm sure your pelvic floor muscles are really tight and spastic which is also causing issues. Rolfing is good also -- I have never heard of Pohl therapy so I can't speak to that. Opiods never did a thing for me. They didn't help with my pain at all and I could barely stay awake nor function. It also caused me massive constipation problems for me which just made my pelvic pain even worse, so I wouldn't recommend those. Have you tried Klonopin or Clonazepam? That will help to relax your muscles and nerve impulses which can help with the nerve pain.

~ L
Sudden pelvic pain onset that landed me in the ER 2x -- diagnosed with severe pelvic floor dysfunction and suspected IC. Diagnosed with pudendal neuralgia via MRI and EMG and hip impingement/labral tear on CTscan. Ran the gamut with tests, treatments, procedures, injections, drugs, etc. since then. Still on the quest for answers....
Buttercup28
 
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Re: Some Questions - Appreciate every advice

Postby PleaseHelp » Tue Mar 21, 2017 8:57 pm

Buttercup28 wrote:Hi,

I think you need to really try physical therapy, but you need to see a pelvic floor physical therapist, not just any physical therapist. You may find your most help with physical therapy. For example, your tailbone could be jammed and causing all of the prickling. And I'm sure your pelvic floor muscles are really tight and spastic which is also causing issues. Rolfing is good also -- I have never heard of Pohl therapy so I can't speak to that. Opiods never did a thing for me. They didn't help with my pain at all and I could barely stay awake nor function. It also caused me massive constipation problems for me which just made my pelvic pain even worse, so I wouldn't recommend those. Have you tried Klonopin or Clonazepam? That will help to relax your muscles and nerve impulses which can help with the nerve pain.

~ L

What you say makes a lot of sense, because i mostly recognize the pain/stitching/prickling when i make movements in my bed or in the bathtub. It feels like unrelaxed muscles / muscular tissue. What I tried next ist to do a bit crosstraining and go running, to relax the muscles or loosen the muscular tissue there - but it doesn't changed. So i thought the problem is not the unrelaxed pelvic floor muscles...

Also i tried to stretch sometimes and do pelvic floor exercises from youtube - but i talked to another PN patient and she said in her case it's better doing nothing because her nerve is damaged on a few places. But if you read my story you will see that it is probably not damaged, i think it's everything unrelaxed - like you said! Do you think i should keep doing things? Because mostly i lay around or sit on a seat ring, so maybe the muscles and the muscular tissue harden of the lack of movements :|

What really helped are warm baths and a heat pillow which i put between my legs when i lay around - so i think the heat relax the muscular tissue and based on this fact physiotherapy would be maybe the right thing..

I didn't get Klonopin or Clonazepam (these are Benzodiazepines), but what i got is Tizanidin (Muscular-Relaxant) - but that did not help.

I have 2 questions for you:
1. Do you think it makes a big difference if i take Muscular-Relaxant or Benzodiazepines?
2. Would you recommend me Rolfing or a pelvic floor physical therapist?

Big thanks for your advice!
That gives me hope because a physical therapy or rolfing can lead to a full recovery i think, most of the other options i have are just "kill pain" and not "healing"
PleaseHelp
 
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Re: Some Questions - Appreciate every advice

Postby Buttercup28 » Tue Mar 21, 2017 10:04 pm

Hi,

It probably is your connective tissue (fascia) that is all gnarled up based on how you are explaining your symptoms. I would say to see a rolfer and ask if they can do the graston technique or something similar which can really break up scar tissue/bunched up fascia. I always found that if I take a really hot shower, it definitely makes more of a difference than any pain medications do. I was also prescribed Tizanidine as well, but it never did anything for me either. The benzos always seem to help -- specifically Klonopin/Clonazepam. And yes they are addictive, so you would want to be careful; however, all pain medications (whether they are muscle relaxants/nerve pain medications/anti-depressants) are all addictive over time -- Basically every medication is, so even though the doctors say 'Oh well that is addictive so be careful', you really need to be careful with all of them. I know doctors are really big on prescribing Gabapentin/Neurontin because they are so-called 'non-addictive' medications. That is complete BS because those drugs are just as addictive as anything else.

Where are you located? Maybe I could help recommend a PT. I would say to keep moving -- walking as much as possible because walking brings blood flow down to your pelvic floor and then the pumping of your muscles bring it back up -- so it's a good cycle of fresh blood and lymph moving down and toxins and waste moving up and out.

~ L
Sudden pelvic pain onset that landed me in the ER 2x -- diagnosed with severe pelvic floor dysfunction and suspected IC. Diagnosed with pudendal neuralgia via MRI and EMG and hip impingement/labral tear on CTscan. Ran the gamut with tests, treatments, procedures, injections, drugs, etc. since then. Still on the quest for answers....
Buttercup28
 
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Re: Some Questions - Appreciate every advice

Postby Violet M » Wed Mar 22, 2017 1:07 am

What do you mean by infiltration? Are you talking about a nerve block?

There is at least one study on opioids that show for neuropathic pain they are only effective for some people -- based on your genetics. Sorry, I don't have time to look for the study right now but you might find it if you go to pubmed and type in keywords neuropathic and opioids.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Some Questions - Appreciate every advice

Postby PleaseHelp » Wed Mar 22, 2017 2:33 am

Buttercup28 wrote:Hi,

It probably is your connective tissue (fascia) that is all gnarled up based on how you are explaining your symptoms. I would say to see a rolfer and ask if they can do the graston technique or something similar which can really break up scar tissue/bunched up fascia. I always found that if I take a really hot shower, it definitely makes more of a difference than any pain medications do. I was also prescribed Tizanidine as well, but it never did anything for me either. The benzos always seem to help -- specifically Klonopin/Clonazepam. And yes they are addictive, so you would want to be careful; however, all pain medications (whether they are muscle relaxants/nerve pain medications/anti-depressants) are all addictive over time -- Basically every medication is, so even though the doctors say 'Oh well that is addictive so be careful', you really need to be careful with all of them. I know doctors are really big on prescribing Gabapentin/Neurontin because they are so-called 'non-addictive' medications. That is complete BS because those drugs are just as addictive as anything else.

Where are you located? Maybe I could help recommend a PT. I would say to keep moving -- walking as much as possible because walking brings blood flow down to your pelvic floor and then the pumping of your muscles bring it back up -- so it's a good cycle of fresh blood and lymph moving down and toxins and waste moving up and out.

~ L

Hey,
I read a few things about fascia about a few months ago but got it out of my head since i thought "when crosstraining and running doesn't help, it's probably not the fascia"... But you cant compare that to each other i think! I definitely will try to see a physio therapist soon, someone with the rolfing method and graston technique. I read a bit about the graston technique, sounds like a really good idea!
But may i ask you how a physically therapy about PN works? Because i cant image laying naked there and somebody touches me there the whole time, I wouldn't mind but i think i have no idea how a physically therapy in that case will work!

I completely agree with you on the addiction part - i made an education in the medical area, so i have an idea about it. I would love to try some benzodiazepines but i also know - nobody will give it to me "easily" - first of all doctors don't like "self treated patients" , and the second thing is the "oh it's so addictive" part - they are more okay with a maximum dose of Gaba or other medicaments which destroy your liver even more... I try to figure out how to get benzodiazepines, I hope i find a way!

I am located in Vienna, if you know someone here, just tell me, if not I found a few people in the past with rolfing in my area, just need to make sure they do the graston technique too!

There is something else which makes me think that the fascia could really be the problem - I put 1,2 times a day NSAR creme (Voltaren) on the area and that helps.

Greets
PleaseHelp
 
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Re: Some Questions - Appreciate every advice

Postby PleaseHelp » Wed Mar 22, 2017 2:41 am

Violet M wrote:What do you mean by infiltration? Are you talking about a nerve block?

There is at least one study on opioids that show for neuropathic pain they are only effective for some people -- based on your genetics. Sorry, I don't have time to look for the study right now but you might find it if you go to pubmed and type in keywords neuropathic and opioids.

Violet

Hey Violet,

to be honest I don't know. The doctors just talk about Infiltration - filled with a Local Anaesthetic and Cortison. I heard Dr. Bodner does Cortison and Botox.

I tried to find something but english is not my native language so i failed... Maybe you will find some time some day, no hurry.
PleaseHelp
 
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Re: Some Questions - Appreciate every advice

Postby flyer28 » Tue Mar 28, 2017 11:09 am

Hallo PleaseHelp
I try to shed some light into your questions:
- infiltrations means either the nerve block or the botox, both are modalities/options with treatment of pudendal neuralgia, but everybody is different.
- Prof. Bodner is one of the best specialist on pudendal worldwide, you are in good hands...I had also an exam by him, he is very professional.
- Clonazepam (Klonopin) works for me rather good, but I take it not every day but once or two times weekly when I have flare-up
- You should try PT in any case, this is absolute must...I dont know anybody in Vienna but I was several times in Sumperk, Czech republic at dr. Vilhelm (excellent PT, with original specialisation - Neurology) which is cca 3 hours driving from Vienna.
I am also struggling with PN, I had the feeling that this is rather muscular, but flare-ups are frequent, so pudendal nerve is involved. . You can write me PM in German, if you want.
Flyer28
summer 2009 - episodic pain in genital area, mainly after sex, then also after any other physical labour
early 2010- major flare-up, lasting 3 months, later almost complete resulion of pain
late 2010 - chronification of pain
february 2011 - ESCW wave. major flare-up of debilitating pain, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypogastric plexus block
june 2012 - dorsal nerve block made by prof. Aszmann, no relief
november 2012 - worsening of pain
flyer28
 
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Re: Some Questions - Appreciate every advice

Postby PleaseHelp » Tue Mar 28, 2017 11:44 pm

flyer28 wrote:Hallo PleaseHelp
I try to shed some light into your questions:
- infiltrations means either the nerve block or the botox, both are modalities/options with treatment of pudendal neuralgia, but everybody is different.
- Prof. Bodner is one of the best specialist on pudendal worldwide, you are in good hands...I had also an exam by him, he is very professional.
- Clonazepam (Klonopin) works for me rather good, but I take it not every day but once or two times weekly when I have flare-up
- You should try PT in any case, this is absolute must...I dont know anybody in Vienna but I was several times in Sumperk, Czech republic at dr. Vilhelm (excellent PT, with original specialisation - Neurology) which is cca 3 hours driving from Vienna.
I am also struggling with PN, I had the feeling that this is rather muscular, but flare-ups are frequent, so pudendal nerve is involved. . You can write me PM in German, if you want.
Flyer28


Thanks for the offer! Sent you a PM, hope you got it. (It shows me that it's still in the Outbox, don't know why)
PleaseHelp
 
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Re: Some Questions - Appreciate every advice

Postby Violet M » Sun Apr 02, 2017 1:09 am

Pleasehelp, I couldn't find the exact same article but here are some related articles.

http://www.nejm.org/doi/full/10.1056/NE ... #t=article
https://www.ncbi.nlm.nih.gov/pubmed/20837195

If a message is in your outbox it means the person you sent it to didn't open it yet. After they open it then it will be in your sentbox.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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