Surgery

[Violet M]

Violet believes in a 70+ % success rate.

Wrong, Ezer. Here is what I actually said a few days ago in this discussion.

I really don't think anyone can answer your question on true success rates with 100% accuracy. I don't think anyone knows for sure and if someone tells you they do, I would be suspicious.

I see that Ezer claims to know the success rate of PNE surgery.

I believe in a 10% success rate.

I do agree with you, Ezer, that the debate is important. Thanks for posting those articles. I don't remember seeing them before.

The point I am trying to make in this debate is that I do not think we should cross surgery off the list as an option and to me, it sounds like that is what you are saying, Ezer. But maybe you could clarify by answering my previous question. Do you think anyone should have PNE surgery? Just off the top of my head I'm thinking of people who have had huge success from surgery -- me, Celeste, Chloe, RJR, Blossum, Catherine Pat, Angel, Antonella...do you think they should not have had surgery?

I Hate PNE, I did what you said and only one day showed up circled. I couldn't get anything to come up when I searched on that day. But thanks for the explanation.

Violet

[ezer]

We have been over that. You told me on the private section of pudendalhope (that I cannot access anymore so I don't know remember exactly how you put it) that the surgeons had reported a 66-70% success rate and that was matched exactly by a certain group of people that you cited to me. That was proof in your opinion, that the surgeons were correct in their 66 to 70% success rate. One can deduce from that that you believe in a 70% success rate.

I personally believe that the surgery success rate is somewhere between 0 and 36.5%. I have said why in my surgery success rate thread. I speculated that 13.5% was probably not too far from the truth then. Nobody contradicted my reasoning.

I don't care if people choose surgery. I do care that people get a complete picture. That includes the multiple failures reported and that completely contradict those fancy studies. It misleads people terribly. People in pain are grasping at straws and ready to believe that published nonsense.

87% success. 100% success. It is nonsense Violet. You should agree with that. If 87% (50% at least in pain reduction, a fantastic number) is correct, everybody should have surgery with Dr. Filler.
Again we were 5 post op patients corresponding after surgery. The 5 of us were surgery failures. I won't name names but they all were at some point on this forum. Most of them quietly vanished from the forum, some very bitter about it.

people who have had huge success from surgery --me, Celeste, Chloe, RJR, Blossum, Catherine Pat, Angel, Antonella

That's an ultra short list you must agree.
Some of the names you have are in my 13.5% success rate number.
Blossum may be a different problem due to the mesh removal. It would be great for the rest of us if blossum was willing to post on the success stories section. What does blossum's 100% success means? No more medication? Back at work?

[Blossum]

My statement was that my PNE is 100% better! I am 15 months post op from TG decompression. I feel amazing and yes I am off my meds. I did not post my success story because I have been very slowly weaning off anti-seizures and opioids. I am free and off of these meds for about 3 months now. I do NOT have nerve pain at all. I do have muscle spasms very rarely when I lift heavy groceries or heavy laundry baskets, etc. I am not "cured"! Before PNE I would ride a bicycle, downhill ski, ride a motorcycle and I won't try these activities again for a while. So cured to me is having the same lifestyle that I had 4 yrs ago. So, yes I am 100% better.... I cook, clean, walk, sit, go boating, swimming and even travel! I no longer have the burning aching foreign body feeling. I have my life back and that was due to surgery, no doubt in my mind. I tried physio, acupuncture, nerve blocks, medication and nothing helped pre op. BTW: I did NOT have mesh removal. I had TG decompression left side only. I do have tvt mesh but I have not stated that my mesh has been removed. I am happy and I feel great. I have my life back because I had the surgery with Dr Hibner. End of story... I will post my success story soon!

[desperate]

Ezer,

My fiance was the one posting for me at the very beginning when I was clueless about this condition. I'm posting now.

And in regards to your statements. Not all fascial adhesions cause pain. It takes a trigger to cause the pain from coming to surface. Like we have seen before many people are in fact compressed by their pudendal nerves and do not have symptoms. Once it is triggered pain results. Who knows if that trigger was a squat injury, a bicycle or a surgery. But stress doesn't "cause" it. It contributes to it, yes! 100 percent. Causes tight muscles, causes inflammation etc etc. But it doesn't causeee it.

And ya I was always 100 percent against surgery. I am just curious about the success rate bc yes I claim to know the answers. But it's a lot harder doing than saying. Fascia adhesions are not as easily broken down like muscular. If you know fascia you can see that it's very durable, almost like rubber from a truck tire. It's pliable but also extremely durable. Takes a lot more to mold this tissue than a few stretches and physio.

Again, these are all assumptions. Like I said I hope I don't come back and start talking how wonderful surgery is. In all honesty we are all on the same boat on this forum. We all want a cure and have our old lives back. I think I agree with you ezer and violet. We should list ALL possible treatments on here. Including surgery. But I do agree with Ezer, people neeeeeed to be informed of the proper success rates for surgery because it is veryyyyy misleading. I remember when I first recovered I had pne I was almost rushing into surgery. All until I researched and discovered the true success Rates. Can you imagine I was considering Fillers surgery bc of his 90 percent success rate as claimed. Then read more pne surgeons success rates and saw 80 percent. Which in my opinion success is more like 15 percent. But I'll give ezer and violet the benefit of doubt of 35%.

[FFSeth]

...

[ezer]

blossum,
Outstanding. Please post you success story. It is very helpful. Controversial? Of course not. I thought it was my posts that were controversial, not yours. Please remember at the end of the day that we are just a bunch of anonymous people staring at a computer screen.

desperate,
Your original post was therefore just a rhetorical question. How sneaky of you...
But you keep talking about mindbody and stress. You clearly did not read my thread or any link I provided. it is not stress but repressed negative emotions which are the central point of the mindbody connection. Stress lowers your pain threshold so it can jump start your pain cycle but stress is not the cause.

Now regarding the importance of fascia, you visibly read a book or you are being trained by a practitioner. Please provide us with book titles or web site links so we can judge for ourselves. That will give a bit more gravitas to your claims.

ffseth,
So far the main successful surgeries that I am aware of were from patients that were found to be entrapped between the ligaments. Celeste, RJR, and Violet were all found to be entrapped between the ligaments. I totally see how pelvic surgery or childbirth could be a problem.
So, I agree, I would have been totally unsuccessful doing mindbody work if that were my problem. But also I would probably would not have experienced any telltale signs of a mindbody syndrome either (no pain vanishing mysteriously when travelling etc.).

[desperate]

Ezer,

I've been trained by a practitioner plus read numerous books, research papers etc.

And it's quite interesting how you say it's not stress that your referring to but suppressing negative emotions. Stress and anxiety is a symptom of negative emotions so they are in fact closely related. Not sure I follow.

And regards to suppressing emotions. ..I think it's a lot easier to do this once your body is on the road to recovery And reduction in pain occurs. Someone with a lot of pain isn't able to think clearly and suppress these negative emotions ( fear, sadness, depression etc). I feel like the mind will be able to help fix the issue only once the physical problems have been addressed (or are being addressed). Otherwise the vicious cycle will continue for years.

Like I said, my opinion, 90 percent physical 10 percent mental. Any other opinions is yours. Feel free to think differently. I'm just stating my opinion. I can be completely wrong. And so can you. That's the beauty about the body. No one will EVER know a fraction of the body.

[ezer]

desperate,

Why don't you provide links? Who is your practitioner? I am genuinely interested. Why make it a secret? Why won't you share with us that healing modality? Don't you think it would be helpful to share with your fellow sufferers?

Regarding your question, here it is:

There are 8 basic emotions (that are all encoded with neuropeptides --at the end of the day, it is all biochemistry). 2 out of the 8 emotions are positive emotions (joy and love). 6 of them are negative emotions (like low self esteem etc.).
Stress is not an emotion but can affect the mis-processing of emotions. Stress will activate your fight/flight response. I am not suggesting to suppress emotions like you wrote. I am suggesting to the contrary to resolve them.

The links I provided you answer those questions.

I can be completely wrong. And so can you.

Except that I am healed.

[Blossum]

Ezer
Thank you .... I appreciate your kind words. I just wrote up an hour long success story and had it all wiped out when I tried to post it???? I saved it to a draft and can't find it.... Can anyone help?

Anyways just wanted to post where I was entrapped.... "Pudendal nerve to found to be scarred to the Sacrospinous ligament, there was also a bundle of tissue from the sacrospinous ligament encasing the nerve and attaching it to the sacrotuberous ligament. The nerve was dissected from all the surrounding tissue that was scaring, especially in the sacrotuberous ligament. Also the pudendal vein was identified and attached to the nerve and ligated".....Not sure if this can help anyone.

[desperate]

Ezer,

You come off very strong. Change your approach because people naturally put up a wall when reading your posts. I know you mean well and your information is very valuable but try changing your approach, it can be very descending. Especially with your last comment " Except that I am healed". I get it, we all do. Your healed. And maybe that happened because of the surgery, maybe because of stretches, maybe because of the mind body connection. All I am saying is it is a multi disciplinary approach. You need a multidisciplinary approach to solving this condition. If you just fix the mind without addressing your body imbalances this condition will creep back out one day. Obviously we dont want that, no one does. So for you healing, you say you got healed by the mind body approach. Did you see what you did though, you didnt get healed by the mind approach but the mind BODY approach. I am sure you addressed your physical problems, digestion, etc just as much as your emotions. Correct or not?

There are many fascia books. I have ordered so many off of amazon including "Fascia: The Tensional Network of the Human Body: The science and clinical applications in manual and movement therapy", "Anatomy Trains: Myofascial Meridians for Manual and Movement Therapists", "Fascial Release for Structural Balance" etc. So many of them online. So many research papers online. You just have to google them and start reading. Theres too much information out there though. Ive gathered my knowledge from practitioners that ive met, books that ive read and a combination of sources.

I try and suppress the negative emotions the best I can over the last year, but as you know it is not as easily done. I get what I have to do, but its difficult to do it. You wake up with pain and cant sit, stand, and your in pain everyday, it plays a toll on your emotional state. I get it all. I do believe me. The mind-body connection is important and I will not deny it, but physical compression is far greater than the state of the mind. Ive done research and found a paper of a woman that had pudendal neuragia by a ovarian varices and had them embolized and got better within a couple months. I have read individuals that done ART on the obturator and got progressively better after a few weeks, back to cycling again. And then I hear you got better from mind body approach. Everyone responds to treatment differently. What works for one will not work for another. So I am happy it worked for you but it may not be as effective for someone else that has a true compression, a structural imbalance or fibrotic tissues limiting their movements. Thats why every treatment should be listed on here. Surgery, ART, Rolfing, Pelvic Floor Therapy, Trigenics, Massage, Foam Rolling, Stretching, Botox, Nerve Blocks, Digestion Support, Addressing Biomechanics, Acupuncture, Meditation, Cupping, Fascia Stretching, etc.