New Person with Pudendal Nerve Disorder

[ritak]

Hi Kathy,
I was at my massgae therapist a while back and she was the one that mentioned the floor of the mouth mimicing the pelvis. I also know being in the dental field myself there is controversy over whether to extract teeth to make room for orthodontics.Making the arches smaller can affect a lot of other things.I am really not sure what to think about it all other than if you make major changes in the mouth that maybe it can affect something else in the body. I know that my bite ( occlusion) is very sensitive and can bring on headaches,jaw aches,neck issues.Much like if you have unhealthy feet it can affect your spine. I will see my MT again in April and maybe get some more info on it for you if you would like.
Rita

[kathyd]

Thanks Rita
It's an interesting theory. If you do have more info that would be great.
Who knows if theres any relation but I had 2 extractions back in about 2002, cause of severe toothaches on both sides of mouth. Turns out I had fractured the teeth unknowingly due to grinding.. they assumed I was doing while sleeping.. They took out the teeth and replaced them with crowns etc. But the dentist said I had a stange bite , and that at any given time it would be different..(occlusion means one's bite, right?)..he said my issue was a case for the dental books and he found it so interesting!
I remember at the time thinking that the toothache issue was the worst pain ever, worse than childbirth..
However the pelvic pain is worse yet!
My dentist solved my dental pain by doing the above. He then designed a mouthguard for me but must admit I didn't wear it as it felt uncomfortable.( He apparently has a weird bite too, but admitted he didn't wear his mouth guard either!)
So then my pelvic pain started in 2006 with what was first dx'd as Interstitial Cystitis, then later sit bone pain, and now after peripheral nerve surgery (which was wrong for me) --anal rectal pain... Oddly the aching is like incredibly painful toothache down below!

Haven;t seen the dentist in a couple years since I can't sit in the chair, but the crowns he put in chipped and fell out eventually... so Ido need to see him...Wonder if the repair of that issue would affect my pelvic pain in a good way?

Tho I really doubt that the 2 issues are related stranger things have happened.
My dentist is a kind caring guy who says he prays for my pain relief, so I will run this idea by him. The other dentists say he is brilliant, so lets see what he thinks.
Thx for the idea!
All the best,
Kathy

[kathyd]

Hi Rita
Just wanted to add that aIso had a labral tear which I had repaired
and my doc also noted that my obdurator internus muscle was spasming at one time...
Kathy

[ritak]

Hi Kathy,
I will let you know if anything what I find out about the mouth/pelvic thing. I know this whole pelvic issue is a crap shoot as what you do for it, who diagnosis's you,etc..... I go along great for awhile and then BAM I feel like I take 10 steps backwards. It is very frustrating. Keep hangin in there
Rita

[konedog4]

2 weeks post-op from the last shockwave therapy (my second). My bruising has cleared up, but I still notice a bit of swelling in areas he worked on. Since there is still some swelling, I anticipate and hope for more improvements when the swelling completely subsides. I do see more improvements however. I do not have any rectal tingling when urinating (that was a consistent symptom before the shockwave, thought to be entrapment of the inferior rectal nerve branch from the pudendal nerve.) I have less sitting discomfort. I can sit for hours at a time now, either on pads or without. I still have some mild tenderness from sitting, but it is much improved. I sat today on a padded stool with no pain, however, I am not pushing the sitting position, as sitting typically caused my symptoms to worsen before. I can exercise more vigorously, including light weights, without significant symptomology. I can stretch as much as I want with no aggravation of symptoms. This being so, I am really pursing getting as limber and loose as I can possibly be. I am specifically stretching the hamstrings and lower pelvic girdle to try to increase my range of motion. I used to always get symptoms from stretching, but now do not.

Bottom line: I am encouraged by the early results. I think at 4 weeks out, I will have a better advantage point to assess the benefits of the treatment. I will post again in 2 weeks.

kone

p.s. for anyone who is interested, the second course of shockwave therapy is $1,500 dollars. (the first round was about $3,000 dollars - 5 days of intense therapy). As far as I am aware, no one in the USA uses shockwave therapy for pudendal issues. If I am wrong, please let me know.

[ritak]

Kone, That certainly is very encouraging and I hope that it continues to bring you relief.Thank you for all the updatesand info on cost.I do not know of anyone doing that treatment here in the states either.
On my end I have had a little set back due to a slip on our ice we seem to have everywhere this winter.I am hopeful that it won't set me back to much. Chad, my chiro recomended that I purchase a theracane and do trigger point and active release techniques on my hip,hip flexors,gluts and psoas so i can keep up on it at home.Boy, it hurts all over but it does help to do some therapy at home.I need to continue to strengthen my quads and hammies since they do not fire too well probably do to my tight psoas and hip flexors.I will continue on my program bit by bit.
You take care and DO NOT OVERDUE
Rita

[spizer]

Kone,

I am from Manitoba and recently saw Dr. Andrew in December of 2012. 2 months post treatment and I'm finding it hard to assess my improvement. At first I thought I had improved maybe 15-20% and was able to sit without a cushion for maybe 15 minutes but now I'm not so sure.

I've had PN for 4 years and have been able to maintain working full time as an accountant (so I sit all day). I sit on two rolled up towels to suspend the perineum.

I found Dr. Andrew to be very thorough and we found about 5 areas of muscle tightness that may be the surrounding causes of PN in my case. Post treatment I've been having massages every two weeks to work on those 5 areas, seeing a chiropractor weekly, and maintaining the stretches daily provided by Dr. Andrew. I have also changed my diet to be dairy and gluten free as the food sensitivity test done by Dr. Andrew showed I was highly sensitive to those food types.

I have been working more lately as it is our busy season at work. As such I'm not sure how to assess any improvement. Prior to seeing Dr. Andrew I was on pain medication (Ralivia) and an Anti-Depressant (Amitryptaline). I am no longer on these medications so I'm not sure if I can chalk that up to the treatment from Dr. Andrew or not.

I am considering going back to see Dr. Andrew. How long did you wait between treatments?

Thanks,

Matt

[konedog4]

Based on what you wrote, I'd say you have improved, especially if you are off medication. Any improvement in this disorder is welcome in my view.

My first treatment was in October, 2012, and my second in February, 2013. Please keep us posted if you go for a second round of treatment.

Hope you continue to make improvements.

kone

[konedog4]

It has been about 6 weeks since my second shockwave treatment by Dr. Andrews in Cornwall, Canada. Here is my progress report. Although I am not yet fully cured, I have gotten better, and for one who was facing the possibility of surgery just a year ago, this is a huge improvement for me.

I have a greater tolerance for sitting. I can now sit virtually all day long without adverse consequences. I still sit on cushions, not wanting to traumatize the perineum, but I can also sit in a regular chair as well. Right now, I continue to sit on cushions so as to not risk reinjuring myself and having a relapse. Since I must sit for my job as a dentist, just being able to sit and not have constant pain is a welcome thing indeed. This is perhaps the greatest improvement I have made in the two sessions of treatment. I have begun lifting hand weights again. This always caused a relapse before, but I have no adverse effects now. I am lifting the weights in a sitting position (on a cushion). I used to lift hand weights in a standing position, but that puts much more strain on the PN/perineum, so I am avoiding that position for the time being. I am capable of much more physical exertion now. I am not pushing the envelope by any means, as I believe nerve tissue needs time to heal without trauma, but it is encouraging to me that I can climb stairs with grocery bags and not have to worry about straining the PN. The only medication I have been on for this condition is Clonazepam. Clonazepam is a muscle relaxer and it helped my perineum relax to some degree. I have gone from 1 mg a day to .25 mg a day. Clonazepam is addicting, both physically and mentally, so I am glad I am on such a low dose now. I went through some significant withdrawal symptoms to get to .25 mg dose, but my perineum no longer needs the full 1 mg dose. I hope to wean off of the medication entirely this year.

I still have PN. I cannot do every thing I want to do. I still have to be careful in my activities. But the improvements I have made give me hope that even more improvements can be realized. I may always have PN to some degree, but I would like it to be as small a degree as possible. Perhaps I will realize a cure in the end too, but for now I am thankful for the improvements gained.

I wish there were American chiropractic practitioners who used Shockwave Therapy on the PN, but at this point in time, I do not know of anyone who does. We have the Mayo Clinic here just 90 miles away, and they do not employ this modality. The expense of going to Canada is a significant cost, but I rationalize it by comparing it to the cost and aftercare of surgery.

I am sure that Shockwave therapy is not for everyone, but it might be quite helpful for many who suffer with PN. The problem is that one cannot know the benefits of Shockwave until one tries it, and there is no way of predicting who will benefit and who will not.

kone

[Violet M]

Kone, that is very good news about your significant improvements. I can't remember hearing of many cures from PN so I think you are smart to remain cautiously optimistic and to continue to be careful.

I agree it would be nice if some chiro's in the US would travel to Dr. A to learn his technique. If he publishes that would help. Do you know if he has any plans to do that?

Violet