Introduction and request for help

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Introduction and request for help

Postby Nicr1983 » Fri Jun 23, 2017 5:14 pm

Hello, thank you guys for running this site. It's alleviating to see that other people also have to struggle with this awful thing. I was wondering if you could point me in the right direction.

Let me introduce myself and my problem.

I'm 33 years old, an avid sportsman and sport motorcyclist. A year and a half ago, I started having testicular pain, urethral pain and increased need to pee. Initially i thought I bruised something while riding my bike and that I would go away......It didn't. The pain was not unbearable in intensity (I guess at its worst it can be a 5) but was always there, and the need to pee was really distressing. The pain was significantly increased after bowel movements. It didn't hurt particularly during sex, but during orgasm sensitivity increased to 200% which made orgasms slightly painful and less enjoyable. In general "internal" pain is something akin to inflammation or hyper sensitivity you probably understand, but others simply don't), while testicle pain is similar to getting kicked there

Like many of you, I went through dozens of doctors of every specialty and took many many exams (STDs, Cancer, MRIs,etc)...it all came back negative. I was significantly depressed, as the condition made it difficult for me to live at 100%....and not having a proper diagnostic was even worse. Well, on December 2016, I finally found a young physiatrist who believe that the pain was caused by a pudendal nerve injury. She prescribed an exam called electromyography or EMG of the pudendal nerve..not the most comfortable exam. The exam came back positive. I Have Pudendal Neuropathy.

So far I've been taking Gabapentine (900mg) and a very low dosage of amitriptyline. Drugs make me little sleepy but help (I'd say 15%). I've also take truck loads of Vitamin B supplements (probably do nothing but whatever). I've also realize that not sitting and most importantly, sports help immensely. Sex, while sometimes "painful" (I can't properly call it pain) helps as well.

Finally, 5 weeks ago I got a nerve block. It made the problem worse starting from week 2, but at week 4 it significantly improved (during the same period I upped the intake of gabapentine as well, so I don't know what made the improvement). Although I'm better.....I'm still not "normal"...It is difficult to live life thinking you'll always experience pain and discomfort, and that I might never be able to ride a motorcycle again.

Since the problem didn't improve with corticosteroids, i figured it was probably an entrapment. I've run out of options here in my country (South America). I found out about MR Neurography (which is not available here).

I was hoping that your collective wisdom could guide me to some options. Assuming money is not a problem. What is my best bet now?. I found out about a Dr. called Aaron Filler in the US who pioneered this tech.Do you guys know anything about him (reviews on yelp aren't very nice)

I know my symptoms aren't as bad as some of you guys, but still, I feel it so difficult to live a full life like this...please help!

Thank you!
Nicr1983
 
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Re: Introduction and request for help

Postby janetm2 » Fri Jun 23, 2017 9:26 pm

Welcome and sorry to hear you are experiencing these issues. From what you noted I am not sure you want to jump to entrapment, that is very hard to diagnose. A few ideas are to check the symptoms list and FAQs off the homepage. I would suggest PT but not sure if there would be enough help for you if you have to travel a long way, although they can help with diagnosis and bladder issues. Some here have said taking a higher dose (1800mg per day) of Gabapentin is needed to really be effective. I will try to find that and edit this post. You can search the block in the upper right corner of the forum to find more info on Dr. Filler.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: Introduction and request for help

Postby Nicr1983 » Fri Jun 23, 2017 9:43 pm

Hi, thank you for the quick reply!

The reason i'm exploring entrapment (or compression) is because..well, what else could it be? I have a positive EMG which shows that nerve is not conducting electricity as it should (not even close). So, the nerve is not working properly. Something must be generating that. If the nerve is not compressed, but only "swollen", an MRN would also be able to show that as well, right?.

Regarding Gabapentine, perhaps I could up the intake, but I dread the side effects. I'm already sleepy at 900mg.

Finally, regarding Dr. Filler, I've tried searching, but couldn't find a proper assessment other than the fact the guy charges a lot, and probably tends to over promote himself......which is not such a great indication...however, he did invent the MRN right?. Couldn't find anything regarding the Drs from France.

Anyways, your guidance and experience is of tremendous help.

Thank you again!
Nicr1983
 
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Re: Introduction and request for help

Postby janetm2 » Sat Jun 24, 2017 2:17 pm

Not sure if the MRM would show swelling or not. I had an MRN that wasn't from Filler and it did not show my entrapment, however the doctor was not using it for that but to eliminate other issues. Maybe some else can give you more information about that. I was thinking you may have tight muscles that a PT could help with to see that relieves the stress on the nerve. My PT determined it was the ligaments which she could not fix and sent me to Dr Marvel for possible PNE.
I agree you may not be able to raise your dose of gabapentin so it might be better to try something else like Lyrica.
Unfortunately there's not much documented information and studies although Violet may be able to point out something on the French Drs.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
janetm2
 
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Location: Maryland

Re: Introduction and request for help

Postby Violet M » Mon Jun 26, 2017 5:31 am

Hi Nicr,

The MRN reports I've seen used words like "increased intensity" in describing the nerve rather than the word "swollen". Another common thing I've seen on MRN reports is that there are enlarged blood vessels near the ligamental grip at the ischial spine, indicating a possible compression on the blood vessels. Since the nerve and blood vessels typically follow the same path, if blood vessels are compressed the nerve may be too. The following thread is an interesting read: viewtopic.php?f=69&t=319
On the 3rd page of that thread Hermajesty posted a report of an MRN. You could read it to get an idea of what types of things may show up on an MRN.

I don't know if they have the 3T MRI in your country but it is somewhat similar to the MRN if certain software settings are used to enhance the nerves. Again, sometimes the surrounding structures are used in making the diagnosis -- for instance in the picture I saw of a 3T MRI of the pelvis, it showed the alcock's canal as being narrowed on one side, indicating a possible compression on the nerve. The imaging experts are going to tell you that imaging can diagnose pudendal nerve entrapment, while some of the surgeons who go in and actually see what is going on in the pelvis have said the MRI/MRN images aren't entirely accurate in diagnosing whether you have PNE.

I think that Dr. Filler was in on the invention of the MRN but it was a team effort. I met one of the other team members at a conference a few years ago. Keep in mind that Dr. Filler is a surgeon and surgeons typically do surgery to solve problems so you may not want to travel all of the way to see him unless you want to consider having surgery. I don't think I've ever heard of anyone getting worse after having surgery from Dr. Filler but I haven't heard of many people getting better either. If you haven't already tried physical therapy, including myofascial release of the pelvic floor muscles, then you may want to try that before travelling all the way to the US or France.

You can find some info about the French doctors at the following link: http://www.pudendalhope.info/node/57 It would be considerably less expensive to see one of them than to see Dr. Filler. My understanding is that Dr. Filler tends to be pretty conservative when it comes to sparing ligaments which sounds nice but may result in an incomplete release of the pudendal nerve. The advantage is less risk of developing sacroiliac joint dysfunction or pelvic instability. There are many variables to consider when choosing a surgeon and in choosing whether to even have surgery. If your pain is currently mild, it may not be something you want to risk, especially if you still have other options you can still try.

Violet
Last edited by Violet M on Mon Jul 03, 2017 5:06 am, edited 1 time in total.
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: Introduction and request for help

Postby Nicr1983 » Tue Jun 27, 2017 2:41 pm

Hi Violet. Thank you for the response.

I tried Myofascial release and other pelvic floor therapies a while ago, and it didn't help. In fact, it was even more painful after it. However, they did detect that my muscles were in fact contracted.

The thing is.....if the problem is muscular tension, then I have bigger problems, because I also have something on my shoulder blades called "Myofascial Pain Syndrome", which means my muscles are ALWAYS contracted and hurt a lot. I've tried months upon months of PT and I've had targeted infiltrations with no result, and they tell me, next step is botox. So....if muscular tension is causing pudendal nerve issues, it means I have bigger problems as it is a systematical failure (which doctors doubt).

The purpose of visiting Filler is not to have surgery, but rather to have a proper image diagnostic (if that is even possible), and to possibly have a targeted infiltration or some other non surgical solution the doctor can offer.

Again, if the problem was muscular....I may have a working theory of how all these issues came up.

I just wanted to make sure Filler wasn't a scam as his reviews aren't great (but that usually happens with online reviews)
Nicr1983
 
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Re: Introduction and request for help

Postby Violet M » Mon Jul 03, 2017 5:56 am

"Scam" would not be the word I would use to describe Dr. Filler. He is a qualified trained neurosurgeon. It's certainly reasonable to go see him for a diagnosis but whether it would be accurate or not, I can't say for sure because it is difficult to diagnose the exact cause of chronic pelvic pain. I know at least one person who had the MRN and was found not to be entrapped on the imaging but later had PN release surgery and was found to be entrapped. So, I guess what I'm trying to say is that it is not a foolproof 100% accurate diagnostic tool.

Dr. Filler also offers nerves blocks as well as surgery and if you are interested in pursuing nerve blocks the advantage of getting them from him is they are done under open MRI so there's no radiation. If your insurance would pay for it that would be great, or if money is not an issue that would be great. Unfortunately, I don't know many people who have had good long-term results from nerve blocks but you might be one of the lucky ones. I tried nerve blocks and surgery so I certainly wouldn't discourage anyone from at least trying them if other things such as PT haven't worked.

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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