has anyone got better from this

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has anyone got better from this

Postby shoshanna1 » Sun May 06, 2012 10:22 pm

Hi everyone
i have been diagnosed with pudendal neuralgia. I can have a few days when I am in only a little discomfort and then for no obvious reason I am in agony pain stabbing shooting pains in the pelvic area. cramp in my back passage, stabbing pain in the buttocks. Do others get bubbling type feelings in the pelvic area. I have had several nerve blocks that have had no lasting effect. I do not have anything physiologically wrong, but the pain is so awful. I have tried numerous medication only diazepam takes the edge of it. Has anyonr got better from this.

Thanks
Anita
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Re: has anyone got better from this

Postby Violet M » Mon May 07, 2012 5:28 am

Hi Anita,

Yes, I am much better and I know many people who have gotten better but it takes a lot of research finding the cause of your pain and the right treatments/docs for your particular case. Please feel free to ask any questions.

Violet M
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: has anyone got better from this

Postby helenlegs 11 » Mon May 07, 2012 3:13 pm

Hi shoshanna,
I would read through the home pages here if you are thinking of taking your treatment further, that may be the next step for you, although it good to have a PN diagnosis. How long have you been in this situation? There is an absolute heap of info on the home pages and as Violet said feel free to ask away :)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: has anyone got better from this

Postby shoshanna1 » Fri May 11, 2012 6:40 pm

Hi Violet and Helen

Thank you for your posts.

The thought i could improve makes me cry with relief. I have never felt so low.
I am 50 years old and diagnosed 18 months ago. I have 3 ongoing processses, central sensitisation which magnifies the sensory experiences. pudendal nerve irritation. pelvic floor muscle tenderness and spasm. I think the next procedure could be neuromodulation but I feel reluctant to go down that route. I think they may also do a scan to see if the nerve is decompressed.

Can i ask you both your symptoms and what has helped you.

Thanks
Anita
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Re: has anyone got better from this

Postby Bathsheba » Sat May 12, 2012 5:36 pm

Yes, people have gotten better. For some it took a while and they had to have multiple surgeries. Some got better without surgery or with only one operation.

I got PN from a botched surgical procedure. I first started feeling a foreign object in my anus as well as tingling in my genitals. My urologist (who performed the procedure) said I didn't have interstitial cystitis, so I stopped taking tramadol. Then over 4 days it escalated into feeling a blow torch up my rectum and hideous pain in my right side genitals. My symptoms are totally right sided. Lumbar and pelvic MRI's (not Potters') showed nothing abnormal. Some sort of nerve test was done which showed nothing (I am not sure whether they were successful or even what they were supposed to test for.)

I had the CT guided steroid injections, which were worthless (though they did confirm PN). A course of physical therapy was also worthless. The PT, who has a PhD in PT and specializes in female problems, told me that PT would never help me as the irritated pudendal nerve was causing the internal tenseness. She said that unless the nerve calmed down, I would continue with this tenderness. She saw nothing in the way of pelvic instability, pelvic floor problems or anything else which would cause PN.

You need a good doctor who is familiar with PN who can ease your discomfort/pain short term and help you decide what's the best course of action. Unfortunately, this condition only affects a small number of people, so there are not a lot of doctors who really know what they're doing. Where are you located?

So, don't despair A lot of us are in the same boat, wondering what to do. Just hang in there. As the saying goes, where there's life, there's hope.

Nancy
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
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Re: has anyone got better from this

Postby shoshanna1 » Sun May 13, 2012 6:19 pm

Hi Nancy

Your symptoms sound very like my own. I have tried some very strong painkilles including Tramadol none of them did anything. Nerve blocks gave very short term relief. I do not often read of these having a long lasting effect. Pt therapy did not help at all. the only thing I find takes the edge of it is diazepam.

Have you found anything that has helped.

I live in Hertfordshire where are you.

I am under the care of Dr A Baranowski and Suzy Elneil at the National Hospital for Neorology and Neurosurgery. I have a lot of confidence in them both and do not believe I could be in better hands.

Best wishes

Anita
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Re: has anyone got better from this

Postby Bathsheba » Wed May 16, 2012 5:39 pm

Anita-

Sorry for the delayed response. I live about 50 miles outside of DC in the countryside. I have any ancestors who lived in Hertfordshire. It must be very beautiful, next to Wales?????

How are you progressing in your search for relief? In my case I am trying to decide whether to choose a surgeon and, if so, who. It seems as though all of the surgeons have mediocre results. It would be nice if we as patients had access to an independent source to verify some of the claims they make. Some surgeons say nothing, some (Houston) pubish lousy results [only 30% fully cured] and others (Dellon) make wild claims of 90% success without any verification. As for the European surgeons, the ones in France say nothing, Azmann in Austria is an unknown and now there is Dr. Tibet in Turkey who does the operation laparascopically and is very aggressively marketing himself via the PN facebook page. Very depressing.

Liike others, I have decided for now to forego the knife until I see better results. Each surgery creates scars and re-operating to remove scar tissue from a prior operation creates more scar tissue. One of the papers listed on this site described re-operating on prior failures and says that sitting on a seat for 45 minutes is "success." The only definition of success I would accept is sitting on a seat as long as I want, as I was able to do before my surgical mishap.

Bathsheba
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
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Re: has anyone got better from this

Postby Violet M » Sun May 20, 2012 1:42 am

Anita, I had stabbing pains too and good days/bad days that were unpredictable. I did not have any permanent relief from nerve blocks either and that's why I eventually opted for surgery.

Violet M
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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Location: United States

Re: has anyone got better from this

Postby shoshanna1 » Sun May 20, 2012 6:03 pm

Hi Violet

Can i ask before you had PNE surgery did they do a scan first to confirm the nerve was compressed or can they not tell before.
How long following surgery did your recovery take.

Best wishes

Anita
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Joined: Mon Apr 02, 2012 8:03 pm

Re: has anyone got better from this

Postby Violet M » Sun May 27, 2012 1:08 am

Hi Anita,

My diagnosis was based primarily symptoms and exam -- pressing on the nerve. I had an MRI to rule out tumors, etc. but they didn't have 3T MRI's back then.

Recovery from surgery was slow. I went off pain meds at 9 months but couldn't really count on a good day until 18 months and relied on ice a lot.

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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Violet M
 
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Location: United States

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