New Person with Pudendal Nerve Disorder

[Violet M]

Hello MNMom,

Welcome to the forum. You're right, there are many people here who are not cured and are in the process of looking for answers but there are many of us who have gotten better and moved on -- or like myself who have gotten better but have stayed around to let people like you know there is hope. I used to hobble around like you and while I am not cured, I can lead a fairly normal life now if I don't try to sit for more than 6 hours a day and I walk briskly a couple of miles almost every day.

It seems like maybe you need more information about your exact diagnosis and the cause of your pain before deciding on a particular doctor or heading into anymore surgeries. It sounds like the PT you saw didn't have much training in treating people with the type of pelvic pain we see around here. Strengthening exercises and stretching often make people like us worse. Did your PT evaluate your pelvic floor muscles internally via the vagina to see if they are in spasm? I had severe inner thigh burning due to the obturator internus being in spasm and the perineal branch of the pudendal nerve being entrapped. Also had major hip pain from the piriformis being in spasm. Those are a thing of the past.

Have you been evaluated for any pelvic instability or chronic ligament strain as a result of your heavy exercise program? I ask, because exercise is what got me in trouble. My first PT put me on a stretching program that I believe pushed me over the edge into full-blown PNE.

I disagree with our previous poster about the ligaments not being important. I was just on the phone this afternoon with a gentleman who had surgery in Houston a few years back and now has severe pelvic instability problems after having the sacrotuberous ligament cut and is in pretty bad shape. I've known too many people who developed instability after having the ligaments cut to just disregard it. I am not saying this as a scare tactic -- it is reality. I believe there are cases where these ligaments may have to be severed in order to release an entrapment and for some people this may not pose a pelvic stability problem. But if there is a possibility that you may already have pelvic instability, you at least want to take the possible risk into consideration.

Take care,

Violet M

[konedog4]

Update: Had my third steroid injection with Dr. Antolak. This one was actually done at St. Paul Radiology by a CAT scan tech and MD. Each side was done. The result was numbness in penis and that is all. Dr. Antolak evaluated me thereafter and was disappointed I did not get numb in my perineum, as this is where my main problem has been. The injection was completely painless. I was able to go to work immediately thereafter.

Now for the good news: Since the beginning of this week, I have made a remarkable recovery. My anal symptoms decreased to nothing, my bladder symptoms decreased to normal bladder, and there is no longer any perineum tightness. I feel pretty much normal for the first time since October 1, 2011, when I lifed a heavy log and really aggravated my pudendal nerve. (I initially injured it in late November, 2010 on an exercise bike). I am very encouraged. I don't know for sure what has caused the decrease in symptoms. I can even sit for extended periods of time (I am a dentist), and have no pain thereafter. I still sit on cushions. Three factors may all play a part: 1) I have an increased dose of Clonazepam to 1 mg per day; 2) I walk 3 miles each day (I cannot run due to a chronically bad ankle); and 3) about one week ago I went before my church and asked to be anointed with oil and prayed over for a cure. I am praising God for the increased in quality of life because I was taking 1/2 mg Clonazepam before increasing to 1 mg, and I was walking regularly too. When I told Dr. Antolak about the improvement, he may have been joking, but he said, "I take full credit!". Often he jokes around like this, so I don't really know if he was serious or not (I doubt it). Anyway, I love the improvement and am not considering surgery as an option now. Dr. Anotolak suggested I could have another injection of steroids in the clamp area bilaterally, but I am holding off to see how long this recovery lasts (hopefully permanently). Dr. Antolak showed me his statistics on the injections (a highly variable response by the way), but he suggested that some people (perhaps me included) have a cumulative effect from the steroid injections and go into remission of symptoms and stay that way for months or years. He showed me some charts of people who recovered for several years only to relapse when they inadvertantly reinjured the area.

I am going to keep doing what I am doing: limiting sitting time, walking and swimming, and lots of praying and praising the Lord. I beleive in miracles and divine healings because I have witnessed such things happen. I am very pleased with the improvement and getting my life back again. It is amazing what effect this has had on my attitude. I feel like a different person.

I am hoping that everyone can experience what I am presently experiencing. I know what PNE feels like and I sympathize with everyone who has it. It is a terrible calamity to experience over a long period of time. Best wishes to all. I will keep you all updated. Thank you for your postings and suggestions. I have been away for awhile and could not post until today.

Jim Koenig

[konedog4]

Hey Kone - I have nowhere near the level of expertise of others who have posted on this topic, so I won't offer any advice.

Can I ask how you find exercise though? Like you I run. I love it. When I find I am feeling rough, or very tight, sometimes it is the only thing that relieves the pain. I get pain in my buttocks/thighs when I start running, but it soon passes and I feel great when finished.

However, I have read that running can be detrimental. Just wondered how you find things?

I cannot run due to a surgically repaired ankle that tore again. So I walk and swim. Walking seems to help more. I have heard that running, especially uphill or taking long strides is supposed to aggravate the pudendal nerve. Since I don't run, I have not even tried out this hypothesis. I know that climbing stairs aggravates my pudendals. And walking uphill seems to do the same. I don't know all the ins and outs of this disorder, and perhaps it depends where exactly the pudendal nerve is entrapped, and that this dictates what physical activities can be done without further aggravating the nerve. For example, some people can sit on cushions with no pain, and some cannot sit at all. Some can run and some can walk. Some have pain standing (I did for about one month). So I think it all depends on how the nerve is entrapped and the health of the nerve. I wish we had more facts and less speculation. Jim K.

[konedog4]

Konedog,

Welcome to the forum. PaulSa just returned from Belgium about a month ago after having surgery by Beco. He had a very positive experience. Why don't you send him a PM?

Hope you find some relief soon.

Thanks. Paul and I have talked at length on the phone. I hope he continues to improve and posts his results.

j. Koenig

[konedog4]

I would suggest a Potter MRI, to see where exactly your entrapments are. Then, you can narrow down which surgeon is able to help you (i.e. proximal or distal Alcock's?...etc)

cari

The doctor who is treating me right now (Dr. Antolak) states that there is not an MRI technique that will definitively show where the nerve is entrapped. Is he misinformed?

J. Koenig

[konedog4]

Hello MNMom,

Welcome to the forum. You're right, there are many people here who are not cured and are in the process of looking for answers but there are many of us who have gotten better and moved on -- or like myself who have gotten better but have stayed around to let people like you know there is hope. I used to hobble around like you and while I am not cured, I can lead a fairly normal life now if I don't try to sit for more than 6 hours a day and I walk briskly a couple of miles almost every day.

It seems like maybe you need more information about your exact diagnosis and the cause of your pain before deciding on a particular doctor or heading into anymore surgeries. It sounds like the PT you saw didn't have much training in treating people with the type of pelvic pain we see around here. Strengthening exercises and stretching often make people like us worse. Did your PT evaluate your pelvic floor muscles internally via the vagina to see if they are in spasm? I had severe inner thigh burning due to the obturator internus being in spasm and the perineal branch of the pudendal nerve being entrapped. Also had major hip pain from the piriformis being in spasm. Those are a thing of the past.

Have you been evaluated for any pelvic instability or chronic ligament strain as a result of your heavy exercise program? I ask, because exercise is what got me in trouble. My first PT put me on a stretching program that I believe pushed me over the edge into full-blown PNE.

I disagree with our previous poster about the ligaments not being important. I was just on the phone this afternoon with a gentleman who had surgery in Houston a few years back and now has severe pelvic instability problems after having the sacrotuberous ligament cut and is in pretty bad shape. I've known too many people who developed instability after having the ligaments cut to just disregard it. I am not saying this as a scare tactic -- it is reality. I believe there are cases where these ligaments may have to be severed in order to release an entrapment and for some people this may not pose a pelvic stability problem. But if there is a possibility that you may already have pelvic instability, you at least want to take the possible risk into consideration.

Take care,

Violet M

In doing research on the different surgical approaches, I came across a report of some patients from Houston who ended up with pelvic instability. I am doing my best to find that data again when I do, I will post it here. I wrote Dr. Ansell an e-mail asking for his surgical statistics on pelvic instability following surgeries where all 4 ligaments were cut. I am a dentist, not an MD, but it just seems logical that when four ligaments are cut in the pelvis, that some instability will result. Ligaments are what holds bones together. When I tore my ankle ligament, I could no longer run as I developed instability in the ankle. How is the pelvis any different? And if there is no harm in cutting ligaments, then why are some surgeons suturing back together the S-T ligaments? My guess is that they want to prevent pelvic instability. Again, this is my guess, not fact. When I get an e-mail response back from Dr.Ansell I will post it here.

Violet, thanks for your positive posts. There are so few success stories in this pudendal nerve disorder that like MNmom, reading the postings can be depressing and discouraging.

J. Koenig

[janetm2]

Ah the pelvic instability issue. I am wondering myself how much an issue this is given that some people have problems and others don't. I myself have had one (I have to reread the report to see if more than one) ligament cut and started out with pelvic instability but it seems to be lessening with PT strengthening my core. Also I may be more careful with how I stand and move (limitations) and maybe time/healing has helped. FYI I am 8 months post-op. Along with PT I am also getting acupincture treatments. As with others I wish there was more definitive data on everything related to PN and PNE so we can make better decisions. Best of luck to you.
Janet

[konedog4]

Janet,

It seems to be a roll of the dice in terms of who gets pelvic instability, (which is extremely painful). I have read some informed consent forms that a person would sign prior to PNE surgery, and the ones I have read all list pelvic instability as a possibility.

You are right in that we, the patients, need more hard data. I wonder if the surgeons who perform these surgeries are publishing their long-term results? If so, where can we access this information?

Jim Koenig

[MNMom]

Just to give you a bit of hope, MNmom, a 47 year old woman (she's just on http://www.tipna.org) had surgery with Dr. Ansell in Houston back in October. She has had a tremendous recovery thus far. She honestly cannot believe how far she's come in just 2-2.5 months. At this rate, she's thinking that she may have a "Celeste-ial" recovery, which is a 100% cure.

Don't be hopeless, but please don't consider Dr. Antolak for surgery. I know of almost no one (well, maybe actually no one) who he's cured from surgery. This is not to say that it hasn't happened, but if it has, I just haven't managed to run into him or her on any of the forums.

Also, don't believe some of the scare tactics you hear about having your ligaments cut. In reality, there are very few people (out of a large amount) who've had any problems from having the ST ligament cut. Dr. Ansell (Houston) believes that there is almost no way to do the surgery (successfully) without cutting it because the PN is so often entangled with this ligament. If you'd like to speak to the woman who just had the surgery in Houston who is doing so well, send me a PM and I'll see if I can set up a phone call between the two of you. There's nothing like actually speaking with someone who's had a successful PN surgery, especially when you're so down and hopeless about your situation.

Greg

Thanks so much, Greg. This does help. I have my reservations about Antolak as well. I will contact you when I start considering surgeons more seriously. I hope my primary care doc will be able to assist as well and I can ask him his thoughts.

[MNMom]

Hello MNMom,

Welcome to the forum. You're right, there are many people here who are not cured and are in the process of looking for answers but there are many of us who have gotten better and moved on -- or like myself who have gotten better but have stayed around to let people like you know there is hope. I used to hobble around like you and while I am not cured, I can lead a fairly normal life now if I don't try to sit for more than 6 hours a day and I walk briskly a couple of miles almost every day.

It seems like maybe you need more information about your exact diagnosis and the cause of your pain before deciding on a particular doctor or heading into anymore surgeries. It sounds like the PT you saw didn't have much training in treating people with the type of pelvic pain we see around here. Strengthening exercises and stretching often make people like us worse. Did your PT evaluate your pelvic floor muscles internally via the vagina to see if they are in spasm? I had severe inner thigh burning due to the obturator internus being in spasm and the perineal branch of the pudendal nerve being entrapped. Also had major hip pain from the piriformis being in spasm. Those are a thing of the past.

Have you been evaluated for any pelvic instability or chronic ligament strain as a result of your heavy exercise program? I ask, because exercise is what got me in trouble. My first PT put me on a stretching program that I believe pushed me over the edge into full-blown PNE.

I disagree with our previous poster about the ligaments not being important. I was just on the phone this afternoon with a gentleman who had surgery in Houston a few years back and now has severe pelvic instability problems after having the sacrotuberous ligament cut and is in pretty bad shape. I've known too many people who developed instability after having the ligaments cut to just disregard it. I am not saying this as a scare tactic -- it is reality. I believe there are cases where these ligaments may have to be severed in order to release an entrapment and for some people this may not pose a pelvic stability problem. But if there is a possibility that you may already have pelvic instability, you at least want to take the possible risk into consideration.

Take care,

Violet M

Violet,
Thank you so much for taking the time to monitor these forums and share your valuable knowledge. Where would we be without you? And thank you for sharing your success story. This diagnosis and condition is very discouraging and it helps SO much when people like you reach out with encouragement. Did you happen to have pain beneath your hip bone as well (where the OI attaches) ? When my perineum flares up so does that area. I have a lot of pain there that can radiate down the front of my legs. I haven't seen anyone post about this symptom so far.

I don't doubt my diagnosis because I do have several key symptoms. I have horrible pain sitting which wraps around my perineum. I am sure this contributed to my hernias. I am also sure the hard-core glute strengthening (literally like buns of steel) PT I was doing for hip stabilization pushed me over the edge as well. It's almost laughable now. One of my hip PTs had me doing 20 min on the bike, squats, stairs, leg lifts and leg press. I was dying. He thought I was a whiny bable when I complained about the pain and told me to work through it. If Dave could see me now !!

I am mainly concerned with Antolak's measure of success/improvement focusing on incontinence,constipation, etc. Pain is the main issue with me. I am sure I do have some pelvic instability as the muscles in my right hip are in spasm and my glutes cannot strengthen or contract without causing flare-ups. This is another reason I am desparate to resolve this. If I cannot tolerate core strengthening my hip joints will deteriorate more quickly.

Another concern I have with Antolak is that he does seem to have an ego and spends more time talking than listening. Does he ever consult with the other American surgeons? I am so thankful for him in that he helped pioneer this in the United States and actually came out of retirement to continue to help people. I think he really does care about people and he came across genuinely concerned about me. He is the only doctor who actually read all of the medical history and forms which were requested of me. However I'm worried that he is not embracing progress or alternative approaches to his protocol. He seems to shoot down any discussions or questions related to methods that are not his own.

I wish that somehow I was able to find out about this disorder more quickly. I can't tell you how many times I googled "Pain while sitting" and "Sitting Pain" and this never came up in the search results.

Thanks again, Violet, I am so appreciative of this site.