Health Organization for Pudendal Education

Sadly, sometimes people get worse from a particular treatment or surgery. Over the 10 years I've been moderating this forum there are very few doctors who don't have any complaints about them. I sincerely feel very sad for any PNE patient who has gotten worse from any procedure or surgery from any provider on the HOPE list of physicians/PT's. Unfortunately, there are almost no PNE surgeons I've heard of who have zero complaints against them. So that naturally leads to the question, should we remove all the PNE physicians who we have heard complaints about? I guess that would leave almost no surgeons on the list. The reality is, with any surgical procedure there are risks.

Ten years ago when I went to France to have surgery from Dr. Bautrant, I went with my eyes wide open, knowing that I might get worse. As an RN who had worked with numerous surgery patients and surgeons, I knew how important it was to choose a competent surgeon. But when you are in pain you get desperate and you don't always think clearly. Really, I had no idea what kind of a doctor Dr. Bautrant was. Incredible, right? That I would make a painful flight halfway around the world to allow a surgeon I knew very little about to cut me open. I was hoping against hope that I would get my life back but also knew and accepted the fact that I could get worse. So my thoughts on PNE surgery and PNE doctors is this: Please do not choose to have an invasive treatment, especially surgery, unless you are willing to take the risk that you might get worse. Not only can your pudendal neuralgia get worse, but you can have numerous other complications from surgery. Surgery is a last resort and personally, I would only go for surgery if I was in severe constant pain/discomfort with no quality of life and I had tried many conservative measures to get well first.

To be a surgeon, one has to have a bit of arrogance about them. (I know from family experience. ) To think you can cut someone open and make them better takes a special confidence. Medical school is not for the faint of heart. Neither is residency, especially surgical residencies. I was told by one surgeon that the only reason a person should choose a surgical specialty is because it is their calling, not for the money, because the liability is dreadful. I recently read an article on medscape stating that 99% of specialty surgeons will get sued. The stress is intense, the competition fierce. The work hours, the incredible responsibilities placed on you at all hours of the day and night, not knowing from one minute to the next what type of injury might be wheeled into the hospital that you are responsible for repairing and saving -- is not something most people can handle. To be that kind of person takes someone with unusual confidence. And so we routinely hear on this forum about this arrogant doctor or that arrogant doctor. Or, this doctor didn't tell me the risks, or that doctor said I would for sure get better. Remember, they are trained to try to make you better and that is their goal. They may be accustomed to good outcomes. They may not want to make you feel scared or hopeless by reciting all of the dangers of surgery. We don't know why a physician may present things in a certain light but I don't for one minute believe that any of them are purposely setting out to make a patient worse or even purposefully being negligent in their treatment of patients. I believe that they truly think they can make you better.

I realize there are insensitive doctors and doctors with dreadful bedside manners. I realize that we as patients are hurting and we expect excellent care. We each can see our side of the story and our own hurt. But we have to keep in mind that doctors are not perfect and they are not God. They are just human beings trying to heal us. Most of them truly have our best interest at heart and are doing everything they can to help us and we are grateful for that.

Remember that HOPE has clearly stated that we do not endorse any of the physicians listed on our website. Any physician who is licensed can be listed. We reserve the right to exclude physicians who have medical board action taken against them. Otherwise, as a tax exempt organization, we cannot discriminate or play favorites. This leaves the responsibility on the patient to make wise choices and research their options.

The moderators of HOPE have tried to make a safe forum where patients can truthfully tell their experiences for the purposes of support and information. So the real questions is not, "why is this doctor or that doctor on the HOPE list of PN physicians". (This can apply to PT's too.) The real question is, should we post a list of docs/PT's? Since many of the PN docs have some sort of complaint against them by a former PN patient, we have to ask, would it be better if we did not post a list of physicians (or PT's) who specialize in treating PN? It would be easier for the directors of HOPE if we did not have this list. But would that be better for the patients? Feel free to post your comments.

Violet

Very important words and very well said, Violet. I think it is important to keep a list of doctors since there are so few who treat PN. Having the list gives a starting point for new members to begin diagnosis and consider treatment options. Our forum is fortunate to have the search function so members can see reviews of each doctor and use this, and personal experience with the doctor, to make their own decision on where to seek medical care.

Stephanies

Violet,
Thanks for taking the time to write such an insightful description. I think the forum serves us better with the listing and as stated you can search to see how others have faired with each. With the limited resources I think it would be harder than it already is to find the help needed for these conditions and understanding that in respect to surgery and surgeons issues are very similar with always the risks and issues that can happen. I am devastated for those who do become worse or are not helped at all from surgery but this condition is so variant that I would hate to lose all the listing if the doctors generally are helping.
Janet

Violet,
To quote stephanies:

stephanies wrote:Very important words and very well said, Violet

Admittedly, there was a time when I wondered why a particular surgeon was listed on the site. However, you're absolutely right with pointing out the patient responsibility in decision making and the realistic expectations.

I also agree with Janet regarding the importance of having resources available to HOPE community members. I very strongly feel the HOPE site would be significantly diminished by removing the physician list.

In regards to realistic expectations with PNE decompressions, I think it's important to note that there is no guarantee for a "cure". The reputable PN(E) surgeons I'm aware of expressly inform their patients that a surgery is considered successful if you experience IMPROVEMENTS with pain and quality of life. If someone is guaranteeing you a cure and/or complete restoration to your previous activity level, I would seriously reconsider my options. I also don't attach a great deal of importance to percentages. Especially percentages that are almost a decade old, and not personally collected by your surgeon of choice.

You can reasonably expect that your surgeon will successfully decompress your nerve without intentionally causing you further harm. Beyond that ... no one knows how you're going to heal or to what extent. Irreversible nerve damage is also a distinct possibility to varying degrees. Currently, there is no diagnostic criteria available to concretely identify nerve integrity. An EMG will sometimes identify nerve dysfunction but not the specifics of what that dysfunction is or it's prognosis.

Also important to note is that anytime soft tissues are cut, pierced or interrupted; scar tissue will form. Most surgeons will do what they can to help minimize scarring, but their efforts really are limited due to the body's own natural healing and defense mechanisms. Some people are more prone to adhesions than others.

I, too, feel very badly for patients who feel they've been harmed by surgery. But please be aware that you would have to prove blatant negligence on part of the surgeon. It really isn't enough to say, " I didn't have this pain before, or that symptom before surgery". It's entirely possible your new symptoms could be a result how your body reacted to a surgical invasion.

Thank you, HOPE Directors, for having a list of world wide treating physicians and PT's available. Resources for PN(E) truly are limited and I appreciate the gift of being able to research options and ultimately choose my own treatment plan.

Karyn

Karyn,
I was definitively told by Dr. Marvel that any IMPROVEMENT was success. He also would not do surgery unless he felt you were a candidate and the example he said of someone not being a candidate was a person that he was treating with conservative methods that only had internittent pain for a few minutes. Not sure it was very high pain where I had almost constant pain that was affecting work and other quality of life and other history and nerve block for diagnosis to make me a candidate. I am also grateful to the Hope directors for providing all they do!
Janet

janetm2 wrote:I was definitively told by Dr. Marvel that any IMPROVEMENT was success.

Thank you for the confirmation, Janet. It's nice to know Dr. Marvel is keeping in line with what other PN docs are telling their patients.
I'm so very glad you've IMPROVED since your surgery!

Kind regards,
Karyn

Violet, very well said. On this journey I have personally met 4 of the physicians listed on HOPE. I do believe everyone of them care tremendously for their patients. They all have very different bedside manners. I think the best advise, if they aren't honest with you about the true risk of this surgery, that they could possibility make you worse then look for another PN specialist. I do think having a list of doctors and PTs is an important function of this forum. When you are new to PN you have no clue where to start, how to find a doctor, etc. As long as HOPE makes it clear they endorse no doctors or PTs on this list but maintain it only as a resource to help people find physicians for treatment and that it is the patient's responsibility to do their own due diligence. To me it would be a disservice to those who visit this forum to remove the name of doctors and PTs.

I am in the UK and have been to a PT mentioned on this forum who has clearly helped some people.

It was through contact by PM with a member on here who had longtime experience with this PT that i was able to make a better judgement myself as to whether to carry on with the PT.

I found this information invaluable and am very grateful to this person as i was questioning my own judgement of the situation whilst still clinging on to the hope that this PT would help me.

Rosemary

Hello Rosemary, I know this post is almost over a year old but if you could share with us the PT that you see in London, UK for pelvic floor PT that would be very helpful. Does your PT team have a website or contact information? Thanks so much