Health Organization for Pudendal Education

Alan, I posted the same article over a year ago in the following thread but I'm glad you brought it up again.

http://www.pudendalhope.info/forum/view ... f=5&t=7645

But how does that help Alex now? First of all, Alex, if your block was recent I want to reassure you there is a good chance you will recover from it and get back to baseline. Many people have flare-ups after nerve blocks but then get back to baseline. I did. I think at this point some extra pain medication temporarily might be the way to go. Also, pursuit of therapies like hot/cold water therapy might help the nerve to heal. But ultimately the trick is to figure out the underlying cause of the pain and treat that underlying cause. If that becomes impossible, then you have to figure out good pain management strategies. You have lots of options so hang in there.

Violet

How does that help Alex now? Maybe it will help him to avoid invasive treatments which have no evidence base , that don't work and possibly make matters worse. But I would suggest we ask the doctors who have been carrying out this - at best - useless treatment for so many years why they did it. I'm sure many will be reluctant to stop injecting PN patients with steroid. I was sold the injections as being both diagnostic and therapeutic. Well now we can cross off the therapeutic part can't we? Is is there supposed to be some long term therapeutic benefit to having a nerve temporarily blocked?

There was a time physicians thought bloodletting helped to prevent disease. Now we know better. Nerve blocks and steroid injections are helpful for certain conditions, so it was logical for physicians to extrapolate to using it for pudendal neuralgia. Doctors are still learning as they go. I spoke with one PN doctor who said nerve blocks did help many of his patients. I suspect there are other physicians who would disagree with the conclusions of Dr. Labat and his team so I'm not sure we can just "cross off" the therapeutic part of it. There would need to be another study that replicates the results of Labat. Steroids reduce inflammation so I don't think they are used just to block the nerve temporarily. At least that has always been my understanding of why they are used.

Most docs work really hard to help us, so I don't think we have to be quite as cynical as you are being, Alan. It's easy to sit back and be hyper-critical of physicians but until you come up with a cure or treatments that provide pain relief for PN patients, you have no grounds for mocking the docs who are trying to help us. I have no problem with people who want to come on this forum and ask honest, intelligent questions in a respectful manner, but you can't mock and be disrespectful on the forum. Please edit your previous post to be courteous as per the terms of this forum http://www.pudendalhope.info/forum/ucp.php?mode=terms or you will be banned.

Violet

Violet M wrote:Alan, I posted the same article over a year ago in the following thread but I'm glad you brought it up again.

http://www.pudendalhope.info/forum/view ... f=5&t=7645

But how does that help Alex now? First of all, Alex, if your block was recent I want to reassure you there is a good chance you will recover from it and get back to baseline. Many people have flare-ups after nerve blocks but then get back to baseline. I did. I think at this point some extra pain medication temporarily might be the way to go. Also, pursuit of therapies like hot/cold water therapy might help the nerve to heal. But ultimately the trick is to figure out the underlying cause of the pain and treat that underlying cause. If that becomes impossible, then you have to figure out good pain management strategies. You have lots of options so hang in there.

Violet

It seemed for a day or two that things would return, but as of yesrerday
The pain is just as bad and after I urinate sometimes I want to throw up. I can't even really feel the stream
Coming out, it's still numb?

Alex, I think it's a good sign that you had a couple of better days. Sometimes it's 2 steps forward and one step back. It may take a few weeks for things to calm down. In the meantime, maybe there are some medications that will help you cope with this better as you go through this temporary flare-up. Have you contacted your physician to let them know you are experiencing these worsening of symptoms?

Violet

Violet M wrote:

Most docs work really hard to help us, so I don't think we have to be quite as cynical as you are being, Alan. It's easy to sit back and be hyper-critical of physicians but until you come up with a cure or treatments that provide pain relief for PN patients, you have no grounds for mocking the docs who are trying to help us.

Violet

I don't see what I have written is "mocking" anyone at all. Maybe you could explain what you mean. We've learned that steroid in nerve blocks for PN doesn't help and may actually make matters worse. You are answering for doctors who have administered such blocks and contend that they were doing their best and that it was "logical" to administer them.
I asked about evidence before I had my blocks and was told that quite a high percentage of patients who had them got better. So where is this evidence, exactly?
Have doctors been administering these steroid blocks without any evidence that they are effective as a therapy, and if so why have they been doing so without evidence? I think the answer to that is much more important than any alleged mockery that you discern in my post.
You asked what good my post was to the OP, and I said I thought it might make him careful about undergoing invasive treatments without an evidence base. I stand by that and challenge you to explain what is "mocking" about it.

If you don't get what is mocking about it then I can't help you, Alan. You are sarcastically suggesting that physicians purposely give people people pudendal nerve blocks knowing full well the blocks aren't going to work, just to get money. And you are mocking them about giving back your money. I have met some of the PN physicians and nothing could be further from the truth. They work very hard to help us and they are using the treatment modalities that they have available to them. Many of them are trying to come up with better solutions. My understanding is that nerve blocks are used in hopes of being a treatment that will possibly work for some patients so they can avoid having surgery. At least that is how I understood it from the articles I read prior to my surgery. Prof. Robert discusses the rationale for using nerve blocks prior to surgery in his original article on PNE. http://www.pudendalhope.info/sites/defa ... Robert.pdf
I guess they could just take us straight to surgery and forget about the nerve blocks if they were really out for the money.

I will be the first to agree that nerve blocks are controversial. However, some physicians have had good results for some patients with nerve blocks. Take for instance Dr. Vancaillie's message to HOPE several years ago. http://www.pudendalhope.info/node/88 They were seeing a substantial improvement in 40% of their patients who had nerve blocks. Seems worth it to at least try them before taking patients straight to surgery. So if you go to a surgeon, that is what they are trained to do. If you don't want nerve blocks or surgery, don't go to a surgeon. No one is forcing people to see a surgeon. But some of us want to try nerve blocks and surgery when other things don't work and some of us have success.

I can't remember you suggesting any treatments that help people with PN, Alan. Your sarcasm and negativity is not helping the tone of this forum. I've tried to explain it to you but you are not getting it, instead you are arguing. The moderators have agreed to ban you from the forum. If you could post the article and raise the question about whether nerve blocks are truly effective, without suggesting that doctors are just in it for the money, that would be fine. But we won't tolerate you insinuating the doctors have bad motives when you don't know that and you can't prove it. Maybe some of them do, I don't know, but the ones I've met, and I've met a bunch of them, are incredible people and I have great respect for them.

The solution is for patients to take the article I posted to their physicians and inspire them to more studies, and to try to raise money for more research. We need people on this forum who will support the physicians in their efforts so we can all work together to try to improve things.

OK, I tried to explain it. I think Alex already knows nerve blocks aren't the answer for him, unfortunately. We have warned people on the website, that nerve blocks make some people worse. http://www.pudendalhope.info/node/51 But some people have tried other things and they aren't working, so you can't blame them for wanting to try some of the more risky treatments. Treating PN is not an exact science so you can't put it in one perfect publication that is the answer for everyone. It just doesn't work that way.

Violet/Mod3

Alan
I wrote this question before but maybe i posted it in the wrong place, as i can not find it. ...lyrica brain uggg
Just wanted to know if you ever had a PNB with steroids and did you get worse afterward? I had two PNB's and was worse after both and permanently after the second.

If you would rather not share that is fine . I read the NIH report , that was pretty helpful.
Violet and you and all that have weighed in on this topic as a community really help me see both sides of the issue, and I find that so helpful.
Peace and best wishes to you and all on the forum
Sadie

mod3 wrote:If you don't get what is mocking about it then I can't help you, Alan. You are sarcastically suggesting that physicians purposely give people people pudendal nerve blocks knowing full well the blocks aren't going to work, just to get money.

Violet/Mod3

No, I didn't write that. YOU DID. You have inferred something from what I wrote and you have put your personal inference into writing. But that is NOT what I wrote..
"And you are mocking them about giving back your money." No, actually I'm making a serious and important point. Some people are on the verge of suicide because of their chronic pain and so are very vulnerable to promises of cures or improvements. Some people spend their life savings on useless therapies so I have suggested before that there should be some element of a money back guarantee. After all, if you buy a washing machine, you would get your money back if it didn't work. If you employed a solicitor to buy a house for you and he didn't buy it, he wouldn't expect to be paid. Yet people pay thousands of pounds or dollars to doctors and sometimes even get worse, and according to you, we just have to accept it because they are doing their best and trying to help. Would you accept that argument from the washing machine manufacturer?
" My understanding is that nerve blocks are used in hope of being a treatment that will possibly work for some patients so they can avoid having surgery." There is a much better way of avoiding surgery, and that is simply not to have it. And if a nerve block "works" it may well be because of the placebo effect. I looked for the study by Dr. Vancaillie and I can't find it anywhere. Did he carry out a randomised, double blind , placebo controlled study? If so where is it? Would you take a drug that had not been through the normal testing procedure and for which there was no placebo controlled trial and say with confidence that it was safe to take just because one doctor said it had a 40% improvement rate in his experience?
"
I can't remember you suggesting any treatments that help people with PN, Alan."
In the terms and conditions of this website is there a requirement for anyone to do that? Why are you picking on me to suggest treatments? Have you asked anyone else to suggest treatments? I have said previously that benzo drugs are apparently very helpful and I think you yourself took one with some success. I believe they help because of their affect on the mind and their suppression of the fight/flight state, which may well cause pain in many PN diagnosed patients.
Also, why are you picking on me, alleging that I am criticising doctors when other posters do just that with impunity? Have a look here for real criticism of doctors and explain why you didn't comment on it: http://www.pudendalhope.info/forum/view ... 678#p57678 You criticise me for being "negative" and yet you use a quotation from one of my posts as the headline to one of these pages. Does that make sense? Do you think Tonygret has made a more or less "negative" comment about doctors than I have?

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As regards people posting under several user names, I believe that practice is obviously rife in the UK section . Many people on here have drawn attention to posts that have all the signs of being fake, but the content, style and language of the posts are not taken into account.

People and health aren't like washing machines. Often treatments work well for one patient but not another. I'm trying to think of even one treatment that is 100% guaranteed to work for every patient. By your logic, Alan, no one should get to try treatments that aren't 100% guaranteed because if that's the standard, most docs are going to leave the profession and there won't be anyone left to treat us. If only doctors could keep us alive forever because there was a 100% guarantee on every treatment.

Sorry, I don't put all of my stock in randomized controlled studies. There are just too many variables you can't control and the studies can be very subjective. Sure, they may be interesting and food for thought -- something to be considered.

By the time I had my PN surgery the Benzos weren't working very well any more. You develop a tolerance to them -- so they aren't a permanent solution. Besides they only helped a little bit. I would hate to think what my life would be like if I had relied only on Benzos.

There is no way to prove that posters in the UK section are all the same person.

You have been allowed to be critical on the forum for a long time, Alan. But it's a pattern, not just a one-time post. It's fine to have differing points of view but moderators consider statements like this

Alan1646 wrote:Can we have a refund then? No? What a surprise.

mocking, and we are tired of it.

Violet/Mod3