Health Organization for Pudendal Education

On thanksgiving, 2018, I fell badly on uncarpeted stairs, actually I was kicked, but that's another story.
By January, I was in pain and started 6 months of PT. It didn't work.
My GP did't even know anything about pain in the anus - shooting, burning, like someone was sticking a red hot poker up me.
I Went to a rectal surgeon. He knew nothing.
Went to my gastroenterologist. He knew nothing.
Then I went to YALE. For sure they'd be able to help me, a urologist, a urogynecologist a neurologist, a rectal neurologist. They knew nothing, all 4 of them.
I went to my pain doctor who performed a pudendal block and a ganglion impar block. Neither one did anything.
I had a 3Tesla MRI, a special one that shows the sacral. It showed nothing.
I went to a Danbury psysiatrist. She knew nothing.
I went to another pain management doctor. He knew nothing.
I did biofeedback. Waste of money.
I went to another doctor to do a block. Did not work.
I went to Ainsworth Institute in NYC, now owned by Corey Hunter for a hypogastric block. Don't go there!
I then had a trial of a stimulation device that gets implanted. The device came apart before I was even in the recovery room.
June 1, 2021 I went to a very well respected doctor in NYC who performed pulsed radiofrequency ablation...he didn't think it would work, although I'd read so much about it, and he was right. It didn't work.
My very last hope was a Dr. Kohli in Boston, an expert urogynecologist, experienced in pudendal nerve pain. He gave me a steroid shot and said, "It could work for 12 days or 12 months". By the time I got back home, the pain had returned and has just kept on going.
I HAVE TO SIT ON ICE ALL DAY ANY NIGHT to numb the pain.
I have one more appt. in Boston where he will give me Platelet Rich Plasma. I told him that was controversial and he said he's had a lot of success with it. But it won't work.
I have tried every drug, gabapentin, Neurontin, amatryptaline, SSRIs everything but Ketamine, which unfortunately doesn't last too long.
SIXTEEN SPECIALISTS FAILED TO SAVE MY LIFE!!! Now I am at the point where death would be a RELEASE.

I forgot to mention the Dr. Arle at Harvard who didn't want to bother to treat me.
I also forgot to mention Dr. Conway in New Hampshire who couldn't reproduce the pain on examination. That's because I was sitting on ice for the 3 hours it took to get there.

Hi,
It hurts to hear what you have went through!
A person that is very close to me has PN (pudendal neuralgia) and have had it for about six years.
First the person was in denial about it and it just went worse and worse.
It is a good thing you are not in denial even though your journey has been long already.
But it is so good you reach out and say you are in trouble with serious pain.
Now, the person close to me is still having PN and from being completely unable to walk and needing to have help for everything now it is possible to walk etc.
The person is also very sensitive to medicine which makes it a bit more difficult to try out new medication.
The condition can also trigger anxiety.
The country where I and the person live in does not have super good treatments for dealing with PN, but is also not the worst I guess.
The person is from another country where treatment is better in regards to treat PN. So thanks for your story regarding that you are using ice to numb the pain - that might actually make it possible to travel for the one close to me!
So even though you didn't know you were helping - you did - thanks!

Now, obviously the very first thing you more than likely wants is pain relief.
E.g. is your pain in one side of your pelvis and does it sometimes radiate downwards (it might also radiate a bit up) ?

I have gathered a longer list of stuff that might help - I will try to find the list and my notes and dispense from that in this thread over the next couple of days.
Until then - just (hopefully) to give you some hope let me tell you that there is a drug called PEA - maybe you heard about - maybe not. Please know the following:
* It takes maybe up to a month before it fully works.
* Depending on the dosage it will either go quicker or slower.
* As to my understanding it should lower inflammation in the body e.g. around the area of the nerve where you register pain (if that is the case for you). Drugs like gabapentin, SSRI etc works instead in the brain.
* PEA is also something the body produces on its own; a larger amount of it through medicine might reduce the pain you experience.
* I should have various links to papers where it is documented that PEA helps people with various nerve pain. I'll try to find the links.
* I am not a doctor so don't trust any advice I give!
* There may be variations in the way PEA is made by different vendors so check for documented efficacy. At least i recall that some of the research wrote which medication was used in the trials.

Besides that I will try to find the other helpful stuff I have gathered.
Also, the one close to me went to a specific pain centre. That helped even though all of it was not only re. drugs, but also e.g. stuff like mindfulness etc. E.g. what ever helps to calm body and mind down.

I will look forward to hear from you again - and remember even though you may feel very alone at the moment it is so good you reached out and there is definitely more you can try as to get your life back on track!

Cheers!

Thank you for your kind concerned reply. I do not know of PEA, It has to have real name.
I have learned of the Dellon Institute in, Towson, Maryland, (really Baltimore) USA. Address is 8601 LaSalle Blvd. Phone # 1-410-337-5400.
The Dr is Lee Dellon. He wrote a book, which you can read on line about pudendal neuralgia/ nerve entrapment.
Chapter 12 is the one to read.
He does surgery to fix it. He is currently recoverint from back surgery so I don't know when he will be up and running again.
I finally contacted them today and they will get back to me. I spoke to Luann, his wife. If I have to go to Baltimore, I will, although it's a very unsafe city as are all cities in USA now.
The deal with and accommodate international patients all the time.
I will post my results after I talk to him.

Please do your research on Dr. Dellon. He has made many much much worse and he tries to lure people into his office.
I have had decompression surgery twice by the best of the best and both surgeries failed and absolutely nothing has helped me. I am re-entrapped
from scar tissue from the surgeries.
Please please do your research on Dr. Dellon.

Thanks a lot Clashganny!

Regarding PEA (Palmitoylethanolamide):
There are several articles and regarding this 'endogenous fatty acid amide'.

* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/ : Open scientific article including a video. 7 patient stories (non pudendal neuralgia) for which NRS (numeric rating scale) for their pain score is found before starting the PEA treatment and after. The patients have various diseases e.g. diabetes type II and neuropathies. It seems 6 out of the 7 cases were succes stories.

In other articles the term VAS is used to indicate a scale of pain experienced. Here a random article that claim they both seem to be reliable and comparable in regards to (in this case) 'low back pain':
https://pubmed.ncbi.nlm.nih.gov/31985722/

* 80 fibromyalgia syndrome (FM) patients were treated in this study with and without PEA to compare the difference of using either - open article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676767/
Groups of people were either on
1. Duloxetine + Pregablin (Lyrica)
or
2. PEA + Duloxetine + Pregabalin

Study showed that those in the 1. group got a reduction in pain
and those in the 2. group got an even bigger reduction in pain.

* Another study with 30 patients - "Short-Term Efficacy of Ultramicronized Palmitoylethanolamide in Peripheral Neuropathic Pain"
https://www.hindawi.com/journals/prt/2014/854560/
, where there seems to be improvements for patients either diabetes or traumatic neuropatic pain.

* Succesful treating pudendal neuralgia with PEA:
https://pubmed.ncbi.nlm.nih.gov/20345619/
It seems to be an Italian study.
This is a closed article. Maybe you can find the article via a library, university library, school library or another way...

* Another Italian study https://www.pathos-journal.com/page_69.html
E.g. use google translate (although like any translation please do not trust it 100%):
https://translate.google.com/translate? ... ge_69.html

The Italian pdf can be found here: https://docplayer.it/34960370-Associazi ... atico.html
, right below the viewer there is a tab to select Download.

The patients got a combination of pregabalin (which could be Lyrica from Pfizer) combined with palmitoylethanolamide (PEA).

The article states that all the patients improved from the symptoms.

* PEA might cause nerve regeneration:
https://academic.oup.com/painmedicine/a ... 76/1867083
, but they also mention Acetyl-L-carnitine as having such properties for neuropathic pain for diabetes patients.

* Spinal cord injury (SCI) neuropathic pain does however not seem to be treatable by PEA according to https://pubmed.ncbi.nlm.nih.gov/27227691/
It seems to be a Danish study.
Likely related to https://pure.au.dk/portal/en/publicatio ... ffa3).html

* A comparison study on previous studies/articles:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094513/


Drugs
--------

Some of the studies might have used Normast. At least the Danish study.

It seems people are given from 300 mg/day to 1200 mg/day of PEA. There seems to be different types of PEA - some that are a bit more efficient than others it seems.

Here in Denmark and likely throughout Europe PEA is registered as a nutrition supplement. Whether that is the case in the USA I do not know.

Also regarding my 2nd hand experience. The person close to me gets:
* Pregabalin (original Lyrica from Pfizer - the other copy brands do not work well for the person. Lyrica/Pregabalin is among other things used to treat neuropathic pain and anxiety.)
* Duloxetine ((SNRI) used for treating depression, anxiety and pain.)
* Baclofen (Muscle relaxant.)
, but please know all these drugs have side effects - some of them can be severe - then again they help in reducing severe pain and anxiety and get the muscles to relax (at least it works for some people.)
In general the person close to me went from lying in bed almost unable to do things to be able to walk again and live a more normal live, although still unable to sit and obviously still experiencing pain although reduced.

I think it would be advisable to include at least your GP to discuss if it would be ok for you to try out PEA. At least it is not that invasive compared to surgery!
You might want to consider Pregabalin, Duloxetine and Baclofen as well. There are some formulas on how to start using these drugs how to ramp them up (and step out of them again) by gradually taking them either more often during the day and/or raising the dosage (or going the other way to ramp out).
The person I know went to a pain centre and got advice from doctors about how to do all that. And remember drugs are not all, but can be a good place to start. Such centres might also be able to help you with advice on physiotherapy, meditation, mindfulness, maybe some types yoga and specific exercises (as long as it is advised to be safe and you feel it to be ok, because some exercises are not(!) good), what you eat, nutrition/vitamins etc.

The experience from the person close to me about a specific PEA product was although not conclusive, because of some side effects due to sensitivity to the drug - likely I guess because that particular PEA product did not only include PEA.
The specific drug was Torpedol from Biosym - but it seems the vendor retracted the product from the market - you can still see it here: https://www.facebook.com/BiosymDanmark/ ... 591571469/
Besides PEA that vendor also added other ingredients such as turmeric, rose root and B vitamins - that (not the vitamins) might have caused the side effects although it could be PEA (but according to the articles above it seems PEA is generally tolerated well by people).
The product although (besides the other ingredients) was based on OptiPEA from the Dutch producer "Innexus Nutraceuticals" - according to the bottom of their web page they are also inspected by the FDA.
There is a long range of vendors using OptiPEA:
https://www.optipea.com/products/

And remember there is also Normast from Epitech Group:
http://www.epitech.it/product/8011/en

I can see on Amazon there are also a lot of PEA products in the USA:
https://www.amazon.com/Palmitoylethanol ... hanolamide

But please check if you choose a PEA drug that it is well documented what it claims it is. Maybe your GP can help you with that.

I know - this was a longer post. I have also other info on other things that you might want to try. I'll see if I get some time in the next week to write about it here.

Thanks again for your help! I sincerely hope you will recover - at least to some degree where you feel your everyday live gets better!

Cheers!

I'm sorry to hear that. While I am not sure what to tell you medically, be careful with those depression pills. I quit taking them because I started overreacting with indignation during common social situations. Although they may help the pain a little, I felt like a zombie.

jaxi123 wrote:Please do your research on Dr. Dellon. He has made many much much worse and he tries to lure people into his office.
I have had decompression surgery twice by the best of the best and both surgeries failed and absolutely nothing has helped me. And I am reading trout from scar tissue from the surgeries.
Please please do your research on Dr. Dellon.

I just got back from Baltimore where Dr. Dellon spent over two hours with me, found the problem and is going to do the surgery. I CANNOT BELIEVE WHAT YOU ARE SAYING. You "are reading trout from scar tissue"? I have no idea what that means. If you know bad things about Dr. Dellon please just tell me. Research him how?

Yes if I were you I would certainly research him as much as possible
He has made a number of people much much worse.
He tried to entice me to come to his office etc. Be very cautious of him

]DR. DELLON IS A COMPLETE FRAUD. i WENT TO HIM AND IT COST ME $25,000 WHICH WAS NOT COVERED. HOWEVER HE ASSURED ME HE COULD JUST MOVE THE NERVE AND ALL WOULD BE FINE. WELL ALL IS NOT FINE. FOR ALL THAT MONEY I GOT NOTHING.[/b] I EVEN CALLED A LAWYER TO SEE IF I COULD SUE HIM. FUNNY, THE LAWYER I CALLED IN BALTIMORE KNEW OF HIM AND HIS REPUTATION. I WISH I HAD CONSULTED A LAWYER FIRST. THERE IS NO WAY TO SUE FOR MALPRACTICE AND WIN. BEFORE SURGERY HE INSISTED THAT THE PAIN WAS ON THE WRONG SIDE AND IT TOOK ME 5 MINUTES TO CONVINCE HIM WHICH SIDE TO OPERATE ON. I ALMOST GOT UP AND WALKED OUT THEN. I WISH I DID!!!!!!!! I posted that I had pudendal nerve entrapment and had been on every drug known to man except Methadone and Fentanyl. I have been to 17 doctors, had an implanted device that didn't even make it to the recovery room without coming off. I've had 2 different nerve blocks from one doctor who was really nice and wanted to help me, a ganglian impar block and another one from another doctor, the name of which excapes me. I had Radio Frequemcy Ablation, I have been from Boston to Vermont to Manhattan to Baltimore trying to get rid of the nerve pain I got from a fall on uncarpeted stairs. NOTHING HELPED. Lyrica at the lowest dose made me so stoned I felt like I was walking above the ground. I am just posting this so no one will go to DR LEE DELON.

I don't know how to work this site at all but wanted this message to get out there.