Measuring Surgical Success

[abmia22]

My question to everyone is are there really any success stories out there? I honestly do not understand why any of you guys even get surgery. It seems to work for no one, and leaves you worse off than you were beforehand. For one year out of nowhere I have pain upon sitting at the tip of my penis, it feels like I am being stabbed, pain with urination, pain after ejaculation, pain with bowel movements. With the exception of Celeste, no one seems to have a surgical victory here. I do not consider just a relief of sexual pain a victory. To live a normal life for me is to be able to sit pain free, no cushions, no pain medication. I do not feel confident to go to any of the surgeons that you guys have been to because they all seem to mess you up in one way or another. I've had all the imaging done, done all the conservative treatment, and I have no scar tissue, no nerve damage, but they see a bunch of veins compressing the dorsal nerve of the penis. No interventional radiologist will touch these veins. A lot of doctors will try to take advantage of people who are chronic pain sufferers with no straightforward medical cure just to get money, which unfortunately seems to be what has happened to a lot of you guys. Also I do not want to get surgery and be addicted to hard narcotic drugs like MS Contin, morphine, duragesic, or any of the isomers of those medications. I am only 25, and it is not healthy for someone to be on that kind of medication for the next 50 plus years, especially when its only masking symptoms not treating the cause. So what should I do?

[Celeste]

Lots of people have posted a surgical success, once. They just don't stay around and keep talking about it. Many who have had a surgical success never introduced themselves on the forum; they got the information they needed, went forward with treatment, and never dropped in to talk about it. I've met a lot of people like that through PM or on Facebook or once in a while by phone. I do think it's too bad that there aren't more on the forums, but there's nothing to be done about it. People have free will.

I'm sorry for your vascular issue. I don't have any advice but I am really hoping somebody can come up with some guidance for you so you can get relief. Pelvis Stressly is looking into those avenues himself; maybe that is somebody you should reach out to and compare notes.

[Charlie]

I've had all the imaging done, done all the conservative treatment, and I have no scar tissue, no nerve damage, but they see a bunch of veins compressing the dorsal nerve of the penis.

You should look into Dr Dellon who is performing decompression of the dorsal nerve. He may be able to help you with your problem.

I agree though if scans are showing no entrapments along the pudendal nerve there would be no point in having pudendal nerve decompression. If you have a pudendal nerve entrapment then you need surgery and physical therapy will not work.

As regards your first point there seems to be a lot more surgeons around the world performing this surgery if it is unsuccesful as you claim. The problem for many patients is deciding which surgeon to go for as there is a lot of choice and they all seem to have slightly different techniques. The surgery is recognized at conferences discussing pelvic pain and a controlled study has shown the French (Robert) surgery to be effective. The surgery has also been peer reviewed in a Neuro surgery journal. I notice also from browsing pelvic pain UK that you can see PNE Drs though their state run medicine, the NHS. So the British Government must see some merit in this treatment approach.

A lot of doctors will try to take advantage of people who are chronic pain sufferers with no straightforward medical cure just to get money, which unfortunately seems to be what has happened to a lot of you guys.

This is a pretty serious allegation and to suggest people on this forum have been essentially been ripped off will be quite offensive to some. I don't see the motive you are suggesting. Your a trained surgeon so you are guranteed a very decent salary for the rest of your life. If you want to make easy money stick to simple surgeries. I think most surgeons that have got into PNE have been motivated by a genuine desire to help suffering people.

Clearly there are opportunists in this field. For instance I went to a clinic run by someone who claimed he was a pelvic pain expert ( he even wears a white lab coat in pictures) and had worked at Stanford University. It turned out this man did not have a single medical qualification, was not a Dr of Psychology as he led me to believe and had never been employed by Stanford. I think they are the type of charlatans you have to watch out for not trained , qualified surgeons.

[abmia22]

The accusation is true. I am fortunate that my family is friends with many chiefs of surgery in the New England area, along with neurologists, and pain management specialists, and they have all said that to me. Also, let me add that some of the best doctors I have been to outside of the pudendal community say that the surgery is crazy. About 10 doctors in the US, could even be less, do this surgery, that is not a lot of doctors. Worldwide the number is probably less than 20, so how can you say to me that a lot of doctors perform this surgery, cause they do not.

As far as Dellon goes, I have sent me records to him, but he has not contacted me yet.

[Celeste]

Also, let me add that some of the best doctors I have been to outside of the pudendal community say that the surgery is crazy.

How lucky they are not to need help getting out of PNE pain. It would be really interesting to see what they would do if they walked in our shoes. In other words, what a wonderful luxury they enjoy--not knowing this pain, and being able to enjoy sitting in judgment of what we do to try to get relief.

[ezer]

Many of us have been through the conservative route before looking into surgery. Some of us have done Wise's Stanford Protocol for years (physical therapy + relaxation) without any success so yes at some level surgery is a last resort and a gamble. I personally know some people that have been cured by surgery but they are not particularly inclined to register and participate on a new forum.
On the other hand, the classmates I stayed in touch with at the Stanford protocol clinic are still struggling with pelvic pain (and that includes one person that was on the success stories thread on the male pelvic pain forum).

Worldwide the number is probably less than 20, so how can you say to me that a lot of doctors perform this surgery, cause they do not.

The list is growing every year. Europe has more and more surgery teams.

[sgrandy]

You know, I have to say that I find posts like this to be ridiculous just as I find the post saying that *no one* gets better from conservative treatments ridiculous. I, for one, know that if my problem was totally resolved that I certainly wouldn't be hanging around this forum because I would be too busy getting on with my life (and you know what, when I DO feel normal for months at a time, I don't read here at all!). Abmia, the people who are here, for the most part, are people who are still in the process of figuring out what the heck is wrong with them which is why the overall atmosphere can be "depressing" or not entirely optimistic.

I have read of many people who have gotten well again after surgery over the years so it DOES happen...there ARE success stories out there but you are only getting a very small sampling of people on this forum so it would honestly be impossible for you to determine that success stories don't exist. You also have to consider what YOUR definition of "success" is...for the majority of people success means that their pain has been significantly reduced to the point where they can lead normal lives again. For example, the TIPNA forum had/has a young woman named Jessica who had surgery but still has some pain of about 1 or 2 on the pain scale...guess what? She is pretty damn happy to be a 1 or 2 and has gone on to further her education, get married AND have her first child...while it may not be perfect, I definitely consider that to be a success.

As Celeste said, the surgeons and pain management specialists that you know are extremely lucky that they don't have to deal with the issues that go along with this dreadful condition. You are right though, 25 IS too young to have to take meds, carry a cushion around etc. etc. I have had pelvic pain since I was 23...I am now 28...it isn't fun but you have to do what you have to do to get better and if taking meds and carrying a cushion allowed me to lead a mostly normal life then I would do it (as it is I only take a small amount of medication and don't require the use of a cushion...lucky me...I guess). There is definitely no point in passing judgment especially with the limited knowledge base that you actually seem to have on this condition and methods available to treat it.

[Charlie]

You know, I have to say that I find posts like this to be ridiculous just as I find the post saying that *no one* gets better from conservative treatments ridiculous.

I agree with your post Sgrandy. However where is the post which says 'no one' gets better with conservative treatment?

[Quilter 2]

Hi Abmia22
Before I was diagnosed with PN last year, I layed on a bed and cryed for 3 months. For someone that never cries, let me tell you, my husband, family and friends had no idea what to do with me. Then the Ultram was prescribed to me and I actually could speak, smile and move. I started at 120 lbs and before the meds helped take away some of the pain I had lost 15 lbs. A walking skeleton. I've been told, that if you're on narcotics for a real reason like PN you won't get addicted, because the drug goes to the pain area. If you just want to get high, then you will get addicted. Seen this in my brother unfortunately.
Look at our mods profiles and you'll see people HAVE gotten better with surgery. True, many have not. I think that is because the nerves are so small they can't be picked up on any tests, therefore the docs have to go by what you say hurts and where. Also that's the reason for the 3T MRI's, which haven't been proven yet I know, but it's a start in the right direction. Also the EMG tests, pudendal blocks and Botox. I feel this rare condition will find its place in medical journals soon. If we can hold on, time is on our side.
Just something to think about.
Doreen

[Charlie]

I feel this rare condition will find its place in medical journals soon. If we can hold on, time is on our side.

Again I agree completely with your points Quilter 2 but I would point out that this condition and the surgery has already featured in medical journals. It is widely discussed at conferances.

The diagnosis of pudendal nerve entrapment is in no way a controversial diagnosis. I can understand people questioning the surgery as there are so many techniques.

It's really just a nerve that has adhesion on it. Something that can happen in nerves all over the body.

I agree if you have severe pain powerful pain medications are essential. They can save lives.