Health Organization for Pudendal Education

ezer wrote:

Then 2 months ago, you told me that in your opinion, 80% of people benefited from surgery which you said was in line with what surgeons are reporting.

Not exactly, Ezer. I took a sample of people that I knew and and pointed out that 80% of them benefited from surgery -- the point being that you can chose whatever sample you want and come up with whatever statistic you want. I can choose a different sample and come up with a different statistic than you. All very unscientific. I don't believe 80% or 13% is an accurate statistic for how many people improve from surgery.

Violet

I did not pick and choose a select group of people. That group is composed of 60% that contacted me on phope or Tipna, 25% that I contacted, and 15% that I met at the headache in the pelvis clinic. I communicated with most of them before their surgeries within a 10 year span. I did not pick and choose surgery failures --why would I have done that? After all I had 2 surgeries myself so I was certainly more looking for encouragement when contacting people.

What do you make of the 10 surgery failures out of 10 lottanerve reported?

Go to the success stories section. You will find out that only 31.5% of surgical successes remained cured. 68.5% of surgery successes relapsed. It is tragic. I did not make up that number. If only 31.5% of self-identified cured people remain cured than the real surgery success rate is much lower than 31.5%.

Violet, do you agree that 31.5% is the absolute best case?

Why do you think Dr. Baranowski is discouraging all his patients from considering pudendal nerve decompression surgery?

Here is another doctor that thinks PNE surgery is not better than a placebo:

https://prostatitissurgery.com/Pudendal ... lease.html

In other words, to the best of our knowledge, the only data relating to pudendal nerve release that have been publicly presented at all illustrate at best a marginal effect, on average seemingly no better than what is seen with over-the-counter supplements, massage, and placebo.

I havent been on this site for some time because it's just too discouraging but chalk me up as another failed surgery . It'll be 2 years this coming April since my Dr Hibner surgery and I'm worse than ever .Ive given up on a cure and only pray for a miracle because at this point Ive tried all the best of every kind of cure from natural to knife. It won't be a sad day when I'm gone .Earl

@ Earl what medications have you tried? maybe give a fentanyl patch a go ?

This thread is EXACTLY the same debate as with VESTIBULITIS and the option of getting a surgery called VESTIBULECTOMY. It's just too easy to draw a parralel.
Basically they are the same. Some women have painful intercourse resolved as a result of that surgery while others only get worse, stay the same or find that their pain moves to a new area.
There must be a connection somewhere, oh if only I were a doctor, the answer must be lying in front of us somewhere, we just can't see it yet

ezer wrote: Violet, do you agree that 31.5% is the absolute best case?

Ezer, I did not pick or choose a select group of patient whom I knew had good results. I chose a random sample of a group of people. Really I don't think anyone knows for sure what the exact success rate of PNE surgery is; however, most insurance companies pay for it because there are at least 3 peer-reviewed articles showing 60-70% have improvement.

ezer wrote:Here is another doctor that thinks PNE surgery is not better than a placebo:

https://prostatitissurgery.com/Pudendal ... lease.html

In other words, to the best of our knowledge, the only data relating to pudendal nerve release that have been publicly presented at all illustrate at best a marginal effect, on average seemingly no better than what is seen with over-the-counter supplements, massage, and placebo.

The prostatitis surgery website you quoted promotes prostate surgery for people with chronic pelvic pain. The interesting thing is that I can't find any peer reviewed articles on pudendal neuralgia in pubmed by the physician who runs that website, Dr. Kongrad. I don't see any stats on success rates for prostate surgery for pelvic pain, other than the report of 6 patients in his online article. That seems a little odd to me when he is trying to discredit one type of surgery while at the same time promoting a different kind of surgery using a sample of only 6 patients. Also, I'm wondering, how does prostate surgery help women, who are 2/3 of PN patients?

I feel very sad for people who don't get good results from surgery. I think many physicians agree it is a last resort treatment for PNE. We have said many times on the forum that it's a last resort option after other therapies have failed and I think it should only be used in cases of intractable pain that don't respond to conservative treatment.

ezer wrote: I think that as an organization that promotes surgery as a viable option, you should really discuss seriously with your distinguished "advisers" those numbers.

Awww, come on, Ezer. I reject your premise that HOPE promotes surgery. It is listed as one of the treatment options among a list of possible options. http://www.pudendalhope.info/node/11 There are some new recent options that could be added to the list too. BTW, the HOPE website advisers are not all surgeons. When you were a director (up until a few weeks ago), you could have invited other healthcare providers to be HOPE website advisers if you wanted to or you could have suggested removing names from the list. So I don't appreciate your sarcasm about who the HOPE advisers are. You are welcome to come back as a director and make changes if you want to.

So Ezer, do you think surgery should be taken off the list of treatment options for PN patients?

I am from a country that does not offer any PN surgery (Canada). I researched extensively on my own because there were no "resources" available in this country. I was helped immensely from the forums and resources available on "Hope". I am one of the patients that has greatly benefited from surgery. Please do not take surgery off the list of treatment options. I don't know where I would be right know if I hadn't had surgery last year. I was in terrible pain and honestly my life wasn't worth living. Hope helped me navigate the system so I could find Dr Hibner and have this life saving surgery. Surgery isn't for all PN patients but for me it helped! I was truly entrapped and needed this done.

Once again violet, it is only recently that I realized what a complete disaster surgery is. 2 years ago, I was struggling with pain and absolutely unable to see the real situation. Yes I think you should add a much more severe warning regarding surgery. I think you could have a proactive stance instead of that constant denial of the reality that sits in front of you.

When you selected that tiny group of people that were 80% "cured", you deliberately qualified as "significantly improved" people that never told us about their real status but you assumed were better. I know that they were not.

You can attack Dr. Krongrad or my character all you want. That does not make surgery more effective.

And again, 68.5% of the patients that self reported themselves as cured after surgery in the success stories section of pudendalhope relapsed. Only 31.5% of them remained cured. How can you not see that as a disaster? This is not a group I selected.

@blossum:what does "I was truly entrapped" mean? I don't know a single surgery patient that was told they were not entrapped.

Ezer
Of course all surgical patients are told that we are all "truly entrapped". I am only stating a fact. I had no where to turn to in Canada. We have one doctor here that is only PN aware! I had to do all my own research with the help of Hope to find the appropriate treatment for PN. It was very difficult. I read the forums for hours and hours.....I had to educate myself. I definitely think that my gynecological surgical history caused my PNE. This surgery caused my entrapment by the ligaments, no doubt. No amount of physio, nerve blocks, etc would have helped me at that point. I needed the decompression surgery. For me with my surgical history, it helped.

ezer wrote:I think you could have a proactive stance instead of that constant denial of the reality that sits in front of you.

I reject your premise that we are denying reality. The reality is that people are completely free to post the results of their surgeries on this forum. The reality is that the HOPE website page regarding surgery says you can get worse from surgery. I don't know how you can get any more definite than that.

ezer wrote:When you selected that tiny group of people that were 80% "cured", you deliberately qualified as "significantly improved" people that never told us about their real status but you assumed were better. I know that they were not.

You are misquoting a private conversation, Ezer which really is a violation of the terms of use of this forum. I never said anyone was cured. I don't use the word cure for PNE because most people have to be careful the rest of their lives. The truth is that 8 of the 9 people in my random sample have posted publicly on the pudendal forums and the one that hadn't posted their results publicly I have met in person and know for a fact that they are back to work, so nothing was assumed.

But, the point is, there is nothing scientific about any of these numbers we are throwing around. Nothing is proved by my sample or your sample.

ezer wrote:You can attack Dr. Krongrad or my character all you want.

I have no intentions of attacking nor have I attacked anyone's character. Anyone can go to Dr. Krongrad's website and check out the facts for themselves.

ezer wrote:Only 31.5% of them remained cured. How can you not see that as a disaster?

Of course it's unfortunate but it's not a scientific number and 31.5% cured is better than 0% isn't it? I wish everyone could be cured but PN is a difficult illness to deal with. So I just feel like surgery should be one of the options that people are given information about so they can make an informed choice. I have never promoted surgery nor will I ever. But neither will I deny the fact that I have my life back after surgery.

ezer wrote:what does "I was truly entrapped" mean? I don't know a single surgery patient that was told they were not entrapped.

There have been patients who reported after surgery that they were told they were not entrapped -- back on the old tipna forum. If the pudendal nerve is squished by ligaments or endangered by fibrous tissue or thickened fascia, that would be considered an entrapment. http://www.pudendalhope.info/sites/defa ... Robert.pdf

Violet

Ezer, I wasn't going to get involved in this conversation but will only speak this once as I am quite concerned that your passion for what cured you will work for everyone. I am so happy for you that you found a technique that worked for you and your willingness to share this with the group is very important because even if one individual on this forum finds your method can help them your information is invaluable. However, I feel it has gotten to the point that you believe no one should have surgery. My question to you, have you born a child that resulted in pudendal neuromas due to severe vaginal tears during delivery, had a hysterectomy that was too aggressive and damaged the pudendal nerve as the uterus was pulled through the vagina or mesh placed in your pelvis that has a suture through the pudendal nerve and now have your pelvis full of scar tissue. To think that surgery should not be considered part of a treatment option especially when there are conditions that I just mentioned that put women at a much higher risk of developing PN then men is disturbing to say the least.

There are many doctors that do PN surgery now compared to even 8 years ago when I was diagnosed. We have no idea how many patients have PN surgery every year because they do not all come to this forum nor do the doctors talk about how many PN surgeries they do in one year and that varies by physician. The best way to really understand the success rate of pudendal surgery would be to do a large multi-physician study that would compare approaches, severity of entrapment which could be determined by monitoring the changes in the electrical activity of the nerve during decompression, the cause of the pudendal nerve damage, treatments tried before, and a number of other variables that would help determine the exact success rate, help narrow down why some individuals are cured, some improve, some have no changes and some get worse.

It has been my observation that the ones who continue posting on this forum are those who did not improve enough from surgery or get cured that are still seeking answers to get a better quality of life. When I first started on this forum there was a woman I spoke to who had surgery by Dr. Conway and had no improvement. She then went to Dr. Hibner for a redo and I can't even tell you the last time she posted on this forum, several years ago because she got her life back after the 2nd surgery to the point that she no longer felt like she needed the support nor information of this group. Was she considered in your statistic?

The question you will never be able to answer, if you had done the emotional work before surgery would you have been able to cure yourself? Since you had surgery you have no way to determine whether the surgery helped contribute to your cure together with your emotional work. The only way to answer those kinds of questions is to have a group that didn't have surgery and do emotional work and see if they get cured and a group with surgery that don't do emotional work and third group that has surgery and does emotional work.

Ezer, just imagine if you have a mesh sling incorrectly placed in your pelvis such that you had difficulty voiding, overactive bladder symptoms that almost drove you out of your mind, feeling the sling inside of you and the doctors treatment was to manually adjust the sling by pulling on it through the vaginal epithelial wall that gave you such bad pain in your groin and leg you almost scream that then by one week after the pulling on the sling left you curled up in a ball with so much pain in your pelvis and the adductors of your legs you could barely walk, two surgeries to get the mesh out of which one of them took 7 hours, a hysterectomy done at the same time as the sling in which the trocars were placed too low and resulted in multiple nerves in your pelvis being damaged, incorrect positioning during the surgery that resulting in femoral neuropathy and you figure out for yourself that you have classic signs of PN that started within a few days of the hysterectomy and bladder sling, you have the feeling of a knife stabbing you in the vagina, something stuck in your vagina, rectal spasms, can't poop, can't have sex because it is painful, can't sit and if you sit even more than 5 minutes too long then it burns to urinate and the rectal spasms get worse, can't stand, clitoral pain, hyperarousal symptoms, labial pain, everything in your pelvis hurts and your butt aches so bad all the time all you want is someone to rub it, you can't straighten your left leg because the quads spasm, your adductors are so spasmed that if you don't get botox into them you have to physically lift them otherwise they spasm, your legs turn purple when you stand for more than 5 minutes and can turn almost black if you stand for 30 minutes unless you get ketamine and lidocaine infusions which decreases some of those symptoms, if your legs get too hot you get a heat rash that runs along dermatome 2 distribution, and you can't stand having anything touching the adductors of your legs or your perineum without extreme pain. If you can cure all of that with just paying attention to your emotions then I would love to trade bodies with you!