Health Organization for Pudendal Education

@rel56 It was my understanding that Dr. Hibner no longer treats men and yet you say that you are a male patient of his. Has he reversed his decision on seeing male patients?

Hi everyone
This post is for Kone and Violet and/ or anyone who happens to read this and has experience with the below docs.
Many of you may have seen my posts.
Kone, I was so encouraged by your story of success with Dr Andrew. I sure hope that you are improving since your recent flare. It sounds like you have somewhat,which is good to hear!
I have tried many treatments, PT drugs, et, to get better since my symptoms began in 2006.
Dr Andrew and his then partner Glen, were the only practitioners with whom I actually saw some brief and encouraging improvement .
My issues started with IC - bladder urge/hesitancy in 2006, (probably pelvic floor dysfunction) and moved on to sit bone pain in 2009.
I had labral tear surgery in 2009, (useless and unnecessary in my case), but what really hurt me most was a nerve re-section with Dr Dellon in June 2011.
\He felt my pain was coming from 2 smaller nerves, the inferior cluneal and the PCFN .. and did the re-section surgery on those. Following that had I developed severe anal rectal pain. 3 mos. post surgery ,and have not been able to tolerate sitting at all since. My obygyn was very aggressive. She cared, so I trusted her when she sent me to Dellon.. (mistakenly!)
Anyway while in Canada with Dr Andrew and his,partner, I actually sat! after the first treatment and improved more and more that week. Hubby and I were cautiously optimistic. On the last day. Friday, the pain gradually started to return, and was back by the time we got home to NJ on Saturday.
I have thought of returning to Dr A. but have had mixed emotions, based on some negative comments from other members of our boards.He and I have spoken again a few times and he is not selling the treatment as heartily or making any promises, like his former partner Glenn, did when first they spoke to me in 2011.
Their partnership ended shortly after my treatment in 2011.

I'm a mom of 3 great and supportive kids-- 2 boys, ages 22 and 20 and a 14 year old girl . I am at my wits end, not knowing about knowing what to do next.
My husband is supportive but even he has been become tired of even discussing it, while my pain continues daily,and I have to get thorough each day somehow.

My bladder doesn't react well to some classes of meds, making it harder to pee,( tho not to all meds,) but I worry about trying new meds,, (which is a BIG part of my problem)..Worry causes the muscles to tighten up.
I've had a an implanted pain pump for 17mos .. it's done very little to help me,. I finally found a smart and interested pain pump doc more recently. We are currently evaluating whether its time to remove the pain pump.
He has another drug in mind which sounds promising and doses not constipate!...which would be great. I have struggled terribly \with the latter due to pain meds. I take diladid rectal supps (12mg) which help only slightly. I also take baclofen/ valium rectal supps occasionally but am told it takes awhile for them to help.
My lastest PT, also the best one Ive found, feels my problems are more muscle related and come from tight anal and urethral sphincters and many trigger points in these areas.
I will be working on a PT and relaxation protocol with her and a urologist who also seems more caring and intelligent.

Kone, I wanted to ask you your opinion if you wouldn't mind, of Dr. Antolak. A patient who had PN surgery with him, and loved him, gave him my info and he emailed me saying he would call and set up a time to talk etc.
That was back in Sept. He never called, but recently sent me some literature and pics of PNE info., all of which were nothing new to me!
I 've heard some negative info about him as well, so after all the docss I've seen, I'm naturally wary of contacting him. It's hard to know who to trust!
I wondered if you thought it would be worth a consult with him or his colleagues . He is technically retired, but seems to work a bit and refers patients to his son or other colleagues. Would this be worth pursuing?
I don't want more surgery after my Dellon experience, but desperately need to continue my search for relief.
For my own sanity and at the advice of my PT and my pain pump nurse, I have warily been driving again, just locally and occasionally. It's more painful after the drive than during. I have not yet found a helpful cushion, but my husband concocted a device I use in the car. It hurts too ,but it's useful.
I love getting out on my own,... works wonders morale wise!
But it takes awhile to bounce back from the pain afterwards, so I can't do it too often. Its hard for my hubby to understand, as he has no idea of the levels of throbbing pain i get...truly a " Headache in the Pelvis". It's hard for anyone to understand, as we all know.

I still think of going back to Dr Andrew, due to my initial success there. But I know it would take a few trips at least, so it's a lot to think about as well.
Just wanted to get your thoughts --when you have time- on Dr Antolak and Dr Andrew. Dr A is very intelligent, and Lernica, from our group, also had some success with him. (I understand if you are not interested in offering your opinion.. also please feel free to PM me if you prefer.)
I understand your frustration of not knowing what activities provoke pain or flares. I feel the same way. So hard to know. And it often has no rhyme or reason.
In my case, worry and stress are the biggest culprit in tightening the muscles and irritating the nerves. I feel it the moment something upsets me!
Thanks very much in advance!
I wish you continued success and a Happy Holiday!
Kathy

Kathy, if you feel like your pain is stress-related maybe you want to try what Ezer has been posting on the mind-body approach. I don't know too much about it since my pain wasn't stress-related but was related to physical activity.

I think Dr. Antolak's son is a family practice doctor so I'm not sure what he could do for you other than order medication or refer you out to a specialist. Seems like you could get medication locally without traveling so far.

Several people have had good results from Dr. Kirk Andrew and it does sound promising given your initial pain relief. I don't know....it's a tough decision.

Violet

Kathy,

First, I am sorry for all your pain and what you have to endure. On the bright side, you seem to have a supportive husband. Some spouses do not react well to injuries to pudendal nerves and it can really strain a marriage, so consider yourself very fortunate. I think I can answer your questions.

First, Dr. Antolak retired earlier this year. I was seeing him at the MAPS Pain Clinic in Edina, MN, and he has left there. I don't think he is practicing anymore. I think he was about 74 years old when he retired.

I am trying to get shockwave treatment available in USA, so we sufferers do not have to go all the way to Canada. I will post more when I hear more from the manufacturer. I talk to the manufacturer tomorrow.

My flare is pretty much gone now. I had to go back to .5 mg Clonazepam daily, and this virtually takes away all my discomfort. Clonazepam is addictive. I had to go through withdrawal earlier this year (very difficult) when I was feeling so much better and decided to cut out the Clonazepam. I was completely off Clonazepam for about 5-6 months before the pain returned. I may try to cut the dose again if my recovery continues.

Tomorrow I am getting a right PN (Alcock's canal) steroid injection by a Dr. Lutz in St. Paul, MN. First time I have seen him. I will post my experience tomorrow.

Quick Update: When I started this "ordeal", I could not sit, could not stand, and almost could not work. I had bilateral PN. I had urinary urgency and frequency. I had rectal tingling after every urination. Now, 4 years later, I can sit, I can stand, and can work! I also have PN on just the right side. No more rectal symptoms, and no bladder frequency. I am happy for the progress. My life is much easier to live now. (I have several other significant health problems that have occurred concurrently with PN that are quite significant (yet unrelated), and they are my primary source of concern now). But it is very nice not to have to be concerned with daily pain from PN! I will take any kind of progress in any area!

PN varies in intensity from person to person depending on the amount of nerve damage/impingement, injury that has occurred. This is why it is difficult to compare people's results from various therapies. I KNOW that shockwave made me at least 50% better, as it relieved my left sided PN entirely. I am hoping that my right side can be relieved as well with further therapy. As to whether you would get better with further shockwave, no one can accurately predict the outcome, not even Dr. Andrews. Anyone who guarantees results in PN therapy is someone I would avoid! Kone

Thank you for the update Kone. I hope your block goes well tomorrow. If I may ask, what time of day you take the .5 Clonazepam? Does it cause you any drowsiness or lack of mental clarity as a side effect? I am thinking of asking for a prescription next time I see my doctor.

Thank you,
Stephanies

Kathy,

I take the .5 mg Clonazepam about 1/2 hour before bed. I sleep better and if I awaken, I can also get back to sleep better too. I have taken it in the morning too, and as long as I stay active, I stay alert as well. It is only when I sit or lay down that the drowsiness of the Clonazepam affects me. I can fall asleep rather easily in a quiet environment and if I close my eyes. However, this being so, I am a dentist and I have to stay alert and think clearly. Clonazepam has not affected my ability to do my job whatsoever. I am alert, can think critically, and make good decisions. It does not affect my driving either. I can drive for hours on end while on clonazepam without getting tired or drowsy. This of course may be different for you or someone else. I have tried many other pain medications, but for me, clonazepam works the best and has the fewest adverse side effects. Of course the drawback to it is that it is physically addicting. When I wean off of it, I do go through mild to moderate withdrawal symptoms that last anywhere from a few weeks to several months. However, when I weigh the downside to the upside, the upside wins hands down. At 1/2 mg clonazepam, I have little noticeable symptoms of pain. At 1 mg I have NO pain symptoms whatsoever, however, I am much more affected by drowsiness, so my happy medium is 1/2 mg.

Update on Steroid injection. I saw a Dr. Lutz at the LAndmark Pain Center in St. Paul, MN. I don't know if he was in a hurry (most doctors are!), but he did not really ask me all that much about the pudendal nerve, how I injured it, etc. He was intent on doing the injection. I told him I prefered the Alcock's canal injection, since it has helped me more than the ST/SS injection site. He went right ahead and gave the injection. Here is the difference between Dr. Lutz and Dr. Antolak. Dr. Antolak gives Marcaine local anesthetic in with his steroid, while Dr. Lutz does not (he uses a bit of Lidocaine to ease the injection site pain). Dr. Antolak was able to assess the quality of the nerve block by what got numb. Dr. Lutz uses his fluoroscopy to determine if the steroid was placed in the right location. I actually prefer Dr. Antolak's method, as it is a tactile confirmation that the pudendal nerve was blocked. With Dr. Lutz, one goes on his assurance that he injected the steroid in the correct location. I prefer the former to the latter.

I wish everyone a very happy new year. Perhaps 2015 will be breakthroughs for many of us? With a condition that can be quite horrible when it flares and then remains, one has a hard time remaining positive with hope for the future. This being so, it is still not a good strategy to give into the depression and hopelessness that oft times accompanies this condition. Had I given in to complete depression several years ago and gave up trying to find a solution, I'd be much worse off today. So we keep looking up and forward, not down or behind. We don't know what tomorrow or next year may bring! Blessings to all of you!

The injection was not painful in the least. Good technique. I am a bit sore the day after at the injection site. Now I wait to see if the injection has any positive effect. If it does, I will wean off of clonazepam again.

Konedog, thanks for your detailed explanation. I would prefer Antolak's method also and I wonder if Dr. Lutz would consider altering his protocol. I don't think I've heard of the PN blocks being given without some type of anesthetic like Marcaine.

Hope you see some improvement shortly.

Best,

Violet

Skipped rope (for exercise), walked and did push-ups without any pain yesterday, so steroid shot has had positive effect. I could not do these things several years ago. Each one would bring pain. kone

Hi Kone,
Thanks so much for your kind note and all the info and encouragement. I have been offline over the busy holidays and just saw your response. Your recovery coming from where you were, to where you are now, are most inspirational to me...Not able to sit or stand... and still be able to work,at that at the time, is very admirable.
As mentioned I can't sit at all for now , and standing causes pain, tho walking is better, ,with pain developing the longer I am on my feet. I still have bladder issues but they are easier to live with than the rectal pain as without the latter, I could drive anywhere, get a job and. live pretty normally.
I too, take Clonazapam but only for sleep. Ive used it at bedtime for a few years I was given 0.5 mgs. also but usually only need about 3/4 of the pill, since my pain suppositories taken during the day, add to the sleepiness at night, so I sleep well, Thank God and often sleep late,as the med makes me groggy and I nap a bit to avoid the pain I know will come when I get on my feet.
Hearing your story makes me consider taking it during the day.. Did it actually help you to sit or stand (prior to your success with Dr. Andrew? I know that we are all so different in how we react to meds, but I'll take any improvement I can get! I actually took Clonazepam during the day back in approx 2007-2008 when my issues were strictly bladder related..no sitting pain then.
The drug didn't help with bladder frequency urge or hesitancy, but it didn't make me drowsy; as you said ,as long as I was busy, I was quite awake. If I laid down, which was rare, I could've napped.. otherwise I was very alert and I think my dose was bit higher than the 0.5 I have now.
I may talk to my pain doc or a caring new urologist Ive recently met, about taking this med during the day. Weirdly my pain doc isn't crazy about rx'g drugs like Clonazepam as he puts them in the 'anxiety drug' category,(even tho I take it for sleep),
and hopefully soon for possible pain relief. (Ive also heard its a muscle relaxant).
I do notice at night my rectal pain is thankfully quiet, but I attributed that to being off my feet, as it lessens when I lie down.

Kone, it sounds like your PN injection helped and I hope It continues to.
How long should a proper injection take to kick in.? Ive had a quite a few of them and never got even a bit numb. I did get numbed briefly from an injection to the inferior cluneal nerve as a pre-req for my mis-guided surgery.thus the reason the doctor operated on those nerves.
An injection to a simliar area months after the surgery, didn't work, but I often wonder if it was done right. Some use floroscopy ,some don't.. etc.
My PT after working with me several times, doesn't feel I have true PN after comparing me to her other PN patients... but instead severe muscles spasm of anal sphincter due to many trigger pts. They are offering a protocol which I pray will help.
Meanwhile thank you for your info on Dr Antolak and Dr Andrew.
I don't think its worth a trip to out to Dr Antolak since I would probl'y would not get to see him and don't want surgery. Did he advise surgery for you?
Further work with Dr. Andrew is something to think about. My husband is wary about trying it again etc. and it would be hard to take the trip as our youngest is in school.. so I will continue with the PT protocol , for now, as it is quite different than any Ive done before..
It involves a lot of relaxation/ mind body work as Violet was suggesting, as well as trigger pt release.
You are right about my husband, he is a good man, and very loyal, but tired of having to watch helplessly, after all this time and wants things to be "normal" again for our family. Thx for your kind words!
As a mom with kids who need me to be to be 'active', I believe in my heart that this will improve.
You've given me much food for thought. I really appreciate it.
Im glad for your recovery and I wish you continued improvement and healing in 2015!!
Thanks so much
Kathy
I wish you continued

Kathy,

I initially started on 1 mg Clonazepam and this helped get rid of quite a bit of pudendal pain. Then, after the shockwave, I went down to .5 mg and stayed there for about 6 months, then slowly weaned off over a period of 3-4 months. I was completely off of Clonazpam for several months before my flare. I don't know if the flare was due to me quitting clonazepam or something else. Currently, I am down to .25 mg Clonazepam. I hope to wean off again if possible. Like you, I take my dose just before bed as it does help in sleep. Again, like you, my pain would completely go away while lying down. I would feel normal when I awoke, but the minute I took two steps out of bed, the pain would return.

As you know, medications affect people differently. Clonazepam has really helped me, as it seems to relax my bladder and perineum enough to take the edge off PN. I once took 2 mg Clonazepam, and this really dulled the pain, I felt almost normal, but I was SO VERY tired all day. I am 210 pounds or so, so the doctor thought I could handle a higher dose. Had I been able to tolerate that dose without feeling sedated and tired all day, I probably would have taken it, as it did relieve the majority of my pain. Even at 1 mg dose, I could fall asleep virtually at will in a quiet area. The .5 dose has minor sedative effect, but has a positive effect on the perineum tightness and pain, so that is probably my ideal dose. It does not hurt to try various doses to see what works and what does not. Of course, the higher the dose, the more sedation (generally) and the more addiction potential. Clonazpam is used a lot to treat seizure disorder. So it is NOT a good idea to go off of this cold turkey, or seizures may result.

Dr. Antolak only mentioned surgery as a last resort. He wanted me to try a series of 3 steroid injections (3 injections per series), for a total of nine injections to see if that helped first. I went through all 9 injections but did not get better. I only got better after shockwave. I could sit for a bit after shockwave, and then about 10 months after the initial treatment with shockwave, I really started to improve.

I am still checking on finding shockwave treatment here in Minnesota. Waiting to hear from the manufacturer of the shockwave device. Will post answer when I find one. Just finding someone to do shockwave on the pudendal nerve may not be enough. I rank Dr. Andrews as a very knowledgeable practitioner, one who knows exactly how to apply the shockwave devise for maximal benefit. Perhaps another therapist may not have the technical experience to properly apply the therapy.

I am a Christian believer and in addition to all the above, I also went to my pastor and he and the elders anointed me with oil and prayed over me per the scriptures in James 5. I believe in divine healing, as I have witnessed dramatic answers to prayers. Now I know everyone does not get healed when prayed for. Much to my great disappointment, I have prayed for saintly people who have died of their illness (cancer). Yet, this does not stop me from seeking divine healing and prayer for myself and others. I mention this because I want to present the complete picture of what I have done to try to get well. I cannot say the prayers did not help, as I have slowly gotten better over time. I had a very strange incident that happened to me in September of 2013, just before the time I started getting much better. I will recap the incident here.

I had applied for life insurance in early 2013. Because of my medical history, no one would insure me (not because of pudendal). I let the matter go and had completely forgotten about it when out of the blue in August of 2013, I got a call from a woman who was interested in selling me life insurance. Her name was Angela. I invited her over to talk about the options, and we met for perhaps an hour in early September of 2013. She introduced herself as Angela, but most of my friends call me "Angel". She could not issue me life insurance either, but we began talking and she mentioned she was a Christian who had recently returned from a missions trip. We talked for some time about it and then I mentioned how I had asked my pastor to pray for my healing for pudendal. I walked her to her car, and just before she got in, she placed her hand on my shoulder and said a prayer for my healing. I did not "feel" anything different after the prayer. I thanked her and I have not seen her since. HOwever, the following month is when I started to get better, and my progress continued one whole year before I had a setback. I have had one other instance of rapid healing after specific prayer as well. I had elbow tendonitis for over two years. My doctor had tried everything and it only got worse. My surgeon wanted to operate. I went to a healing service and a young man specifically prayed for my elbow to get better. He told me that God had given him the impression that someone at the meeting would need their arm healed. Again, nothing happened immediately, and I kind of discounted that any healing came out of it. However, two months later, while going through physical therapy, I got dramatically better and now have complete recovery and a very strong elbow again. Was my recovery due to prayer or physical therapy , or both? I cannot say with certainty. However, I cannot fail to mention that prayer was a part of my recovery. I wanted to mention this to you as a possibility if you have not considered it.

One final thing. When I had a pudendal steroid shot from a particular practitioner, who used a form of radiation to position the needle, I got numb in both my pudendal nerve tracks. Dr. Antolak told me it was an ideal bilateral injection. This was in July of 2013. So perhaps that had something to do with my recovery months later? I cannot say with any degree of certainty. Most practitioners told me that if I did not feel any better within 2-4 weeks, then the injection probably did not help.

Anyway, try everything at your disposal Kathy. I am currently praying for a fellow sufferer, and I am going to add you to the prayer request. I will be praying for you faithfully for many months to come.

kone