Health Organization for Pudendal Education

Konedog - I PMd you about 4 days ago and still no answer. Can you tell me if you received anything? It is not in my Outbox any more and appears in Sent. Thanks.

Hi Kone,
I saw ur recent post and hope that u are feeling better. It sounds like the 3 day sessions are a great maintenance type thing to help you, if pain remains ...at times.

BTW, did you ever find that stress ever exacerbated your pain in the past, or gives you any symptoms in the present?
I know w e are all so different in how/why we feel pain w sitting.
For me any kind of stress (like a disagreement with hubby ..) who can't relate to pelvic pain at all, brings my pain levels way up. It can be a very isolating feeling, which exacerbates pain as well.

Even excitement or being extra busy (like packing for the family's summer vacation) brings the pain levels up a bit. This
is because I clench these muscles w/out realizing it, and I do it more when I'm stressed, angry, rushing etc.
This puts my anal/rectal area -(pelvic floor) into an an even tighter spasm - (my tight pelvic floor is my particular
issue).

So tho I'm pretty sure that my genetic pre-disposition to worry and stressing over life's challenges, didn't cause my tight pelvic floor and pain, I know that it maintains it.

Tho my great PT has been a wonderful source of help and also emotional support, the above is my challenge to getting rid of or diminishing the pain. I dearly wish for support at home, and know that would also help a lot in my recovery, but mostly I rely on my kids ( they are teen-age and early 20s.) for that. (They are good kids but I don't want to them to
have to deal with this.)
Since I did have success with Dr Andrew back in 2012.. and knowing that he is working on his own now, I am so tempted to go back up. I'd like to work with Dr A. on his own, as I when I was there he worked with a partner whom he broke off with shortly after my visit.

How far do you live from Ottawa? ( where he works now right?)
We are a 7 hour drive from Cornwall, so Ottawa is probably 8 hrs.
It' s something I always think about if I can convince my husband to drive me and to understand that one or 2 trips is
not going to be enough..
Thanks again for keeping us posted with all the details of your experience, and I hope that you are now feeling much better!!

Hi,
This reply is to 'make it stop',... who mentioned she/he needed to something to break up the trigger pts in the pelvic flr.
and was discussing shockwave.
I just wanted add that I thought I noticed in ur signature that u were from the Chicago area.
I've heard great things about a very good PT names Rhonda Kotorinos (sp?) in that area.
She is considered to be quite savvy from what Ive read over the years. I went to her site and she has other PTs working with her in her practice.
Have you tried to contact her? Tho She herself may be booked heavily, maybe her associates could see u sooner.
Just a thought in case u hadn't already tried.
Good Luck!

Hi Kathy,

Yes, I've been to her before. Thanks, though.

Are there any non-stop flights to Ottawa from where you live? A quick flight on your own might be worth considering to not have to deal with a 16-hour roundtrip drive with your hubby. Also, I can relate about stress making the pain flare and wanted to suggest trying xanax if you haven't tried it yet, because aside from treating anxiety and stress, xanax is also the best muscle relaxer that I've tried and also seems to have an effect on nerve type pain.

KathyD:

I am still doing well. I don't really have any pain, just minor symptoms now. What a relief. I can do things again that I have not done (without a lot of pain) in 5 years.

To answer some of your questions:

1. Stress does not seem to make my condition worse and I'm thankful for that. I was on Clonazepam for about 5 years (1 mg) as it relaxed my pelvic floor and helped with urinary symptoms. Since I don't have any urinary symptoms any longer, and my pelvic floor is much better, I went off Clonazepam. It was difficult to say the least. I had become physically addicted to it and I had to wean off very slowly over the course of 6 months. I'm off it now, but it was tough to stop. I had a lot of anxiety, nervous feelings, a tremor, etc. that I had to deal with. I mention this because of your mention of Xanax. I have some experience with Xanax, and that's another one that can easily become addictive. It makes me feel so relaxed and so good that I became addicted to that one too. The entire class of benzodiazepines is quite addictive. I started on Clonazepam knowing that I would likely get addicted to it, but it was the only medication that really helped me cope with the tightness and pain. So I took it, knowing I'd be addicted over time. I'm glad i'm off of it now. It really made me tired.

2. I live in Minnesota, so I am a long ways from Ottawa. I take a plane out of MSP airport and generally fly to Washington DC and then up to Ottawa. Then I rent a car, drive to Cornwall and stay at a motel. The trip is quite expensive, but since it makes me feel so much better, I'm willing to spend the money. Unfortunately, I can only afford to go after I save up some cash and have vacation leave from work. If I lived closer, within driving distance, I'd be there every 3 months. I know if I could do that, I'd be "cured" now. I went in February of this year and had the best result of all my treatments. I have been mostly pain free since. I still have minor symptoms, so I may go back again this fall and try to deal with those.

3. Dr. Andrews does a lot of his pudendal patients in Cornwall again. He was doing these treatments in Ottawa, but as of February, he had me come to Cornwall.

4. I continue to stretch a lot. I have found that stretching makes my pelvic floor more relaxed, and I also have less symptoms.

In regards to other people understanding this issue of pelvic pain, I have found that very few, if any, understand. It is such an odd condition that no one can really relate to it. Everyone can sit down, right? So how can they relate to a condition that prohibits you from sitting? How can they relate to a condition that causes pain when you exert yourself? Or causes pain while standing? My family (unfortunately) has little to no comprehension of how this condition impacts one's life, one's employment, one's activities and one's spirit. I went into a deep depression when my condition worsened over the years, a depression I am now just emerging from. I had virtually no support or understanding from my family or wife. This caused considerable stress in our family and continues to cause stress. If a person has cancer, others can relate because they've seen others go through cancer and they cut you some slack. Or if you have severe back pain, others have had back pain themselves and they know how disabling it can be. But how many have had pudendal pain? Likely, no one. So how can they relate? Truth is, they can't. I had to get into a mindset where I was going to get better with or without their help, and that is what I did. I focused on my needs, and did what I needed to do to get better.

kone

Kone, I had trouble going off clonazepam too but it was a lifesaver during the worst of PNE because it helped me get a few hours of sleep a night. I had to wean off slowly.

I admire your courage and determination in facing PN.

Violet

Thx Kone,
for your reply. I too admire your courage and determination.
It is so hard when no one "gets it "and they compare what you have to more common ailments. I experience the same thing.
It's so embarrassing to tell people you can't sit; they look at you like you are an alien!
I also relate to the lack of understanding and family issues, as I have a similar problem with my husband.
Since my issues started with urinary urge/frequency ,years back, he has loyally taken me to too many doctors to count.
My former NY pelvic pain doc sent me to several specialists . Most had little knowledge of pelvic pain or sitting issues.
Pain docs had me try procedures which didn't work, so eventually my husband just had enough and prefers not to talk about it,
when at times I really need the support. I know he feels helpless watching me suffer, and not and being able to fix things. So he tunes out.
Relatives and friends urge me to remember that he is suffering too, so I try to let him know that I understand, but he is a quiet man and doesn't say much.
I do wish tho that he (an avid reader) would read about these issues online, or in one of the many books!

I have some mild improvement ,gradually since 2014 (as I think I mentioned through the work a great local PT and her urologist partner.
Im thankful for that.
They feel my issues come from a very tight pelvic floor stuck in spasm.. and my fear of pain and symptoms maintains the problem. Basically my nervous system is in a complete tailspin due to years of confusing diagnoses and too much research!
Now my brain has to re-learn what is normal, but they feel I can re-set my brain by dealing with the fear, and by meditating, daily, something that is hard to train one's mind to do.
I admire you for coming to grips with fact that youalone must face the issue and conquer it.
I have other weird symptoms that came up over the past year due to the meds , long story!
I have an intrathecal pain pump , but I don't believe I was a true candidate for it, as it has not helped much, and my issues are different and more related to relaxing the pelvic floor.
Also the pump has made me a slave to taking a laxative (due to the opiate med) in the pain pump.
Its been a guessing game as to what to take, and it really messes with digestive issues.
I long to get my system back to normal, all around.

I understand what you are saying abut the drugs. I have Xanax on hand.( 0.25 mg) and was told to take it 3 times a day! I don't like taking drugs . So I rarely take the Xanax, tho hubby begs me to. I've only taken it once a day and rarely,as I didn't notice much difference.
I take Clonepin, but only to sleep.I was prescribed 0.5 mg, but I cut it half and that usually works, thankfully.
I too am afraid of withdrawal - The drug is great for sleep, but I'm not sure it would help with pain in the day time and it does make one
sleepy. I use a rectal pain suppository when needed. It now works only while lying down; I don't want to spend my time lying down..
but it helps a bit for now.
I am very happy for you that are past that ordeal of getting off those meds.
About Dr Andrew , thx for the info ...wanted to discuss that fa bit but must sign of for now. I( keep thinking about it )
Thx so much for replying and reading this. Hope I haven't repeated myself! I'm glad you are doing so well. You are inspiration to all chronic
pain folks that we can get better!

Progress Update

It has been 7 months since the last session of Shockwave therapy in Cornwall, Ontario. It has been a very good 7 months. All the gains that were made during those three sessions have remained. I can do just about anything, except ride a bike (never again) and sit on a really soft cushion comfortably. A soft cushion sometimes brings some discomfort in the perineal area. So I avoid soft cushions. Hard seated chairs are no problem. I am exercising vigorously, even doing sit-ups again with no return of symptoms. I carry a horseshoe neck pillow with me just about everywhere so I can sit comfortably. Sitting on this 8 dollar cushion works well for me and is just as good as those 30 to 100 dollars custom cushions one can buy on-line.

Compared to where I started in this journey in 2011, I am light-years better. Shockwave and daily stretching was the therapy that worked wonders for me.

I still have a small remnant of pudendal entrapment, as I still have very mild symptoms sitting. So I will likely pursue additional shockwave treatment to try to extinguish the remaining symptoms.

I know how fortunate I am to have the improvement in my condition. I realize that others are not as fortunate and I sympathize with the daily battle with pain. If you've never considered shockwave therapy, I'd suggest that you look into it. It is not a miracle one and done cure, but with each session I've gotten better. (5 total sessions so far). It is expensive, but I'd mortgage the house if the treatments made me feel better and more able to do the daily things everyone else takes for granted. The elimination of daily pain was a huge boost for me. Now I can work (I sit virtually all day) without coming home wiped out with pain in the evening. Shockwave may not cure you, as it has not cured me yet, but it has made my life worth living again and given me hope.

What more can I ask?

Best wishes to all that continue to battle this terrible condition. I know the struggle and it is formidable. I hope you find progress and better lives with whatever therapies you pursue.

kone

Love these kinds of stories. Thanks for posting, Kone.

Violet

hi Kone, i am new on this forum i read all posts and happy to hear we can treat our condition .i am suffering more then a year now living with chronic pain almost awry day, i am from Toronto Ontario and i also found Therapist in Cornwall his name is Glenn Cameron and he is doing Shockwave therapy too.Did someone know or herd about him please let me know .I have an appointment on October to go and see him.