Health Organization for Pudendal Education

Hi Beverley
Just happened to sign on and see your post. Sorry I didn't check in sooner.
Thx so much for your suggestions and understanding.
Yes it sounds like we have seen the same docs and pts in NY... and they do have different opinions and approaches..
Would love to talk more about the trigger pts you mentioned, Will write again later as Im off to bed now.
Thanks again... hope you had a good week!
Kathy

I resumed my PT, twice monthly, with some moderate effects. Very good november, partial worsening early december. Doing some internal trigger point release, and despite some improvement, there is still some heavy tension in the area of piriformis, obturator internus, both ischiocavernosus. Basically the feeling of having violin strings going from penis to rectum, bilateral, right side worse.
What was interesting, my PT said that there is a lot of trigger points in pubic area, in the lower part of musculus abdominis rectus and he said that trigger points in this muscle often impose genital pain. Does anybody know which stretches are best to treat this area?

Flyer28

I've been doing yoga 2-4 times a week for three weeks now seems to help. I'm also taking 10 mgs of Valium to keep me relaxed. I'm having trigger point injections on 12/30. I try to remember to keep you posted.

Hi to all and Happy Holidays
I haven't been online for a long while but popped in and noticed some responses ...Thanks so much to all who offered their ideas. I appreciate it very much.
I am going to re-start PT ..with someone who is luckily right in my neighborhood. My NYC PT will call her and update her on my current issues.. To Beverly, thx for mentioning those trigger pts ..I will tell her about them. I have worked with this PT gal once before to re- hap my hip after labral tear repair, in 2010.. Hopefully she will try what you suggested Bev... as I have varying urinary issues.. and maybe working those trigger pt areas could help!
I thing the PN is reacting from being on my feel all day, as I can' t sit yet.. due to my anal pain issue

Someone mentioned some rectal muscles that could be involved... I have to re-check all that posts, as for me muscular stuff is a big issue.
I unconsciously clench the rectal and abdominal area all the time.. my chiropractor said I have the tightess set of abdominals he's ever seen, (as if I worked out every day!!)
So I need to relax them somehow... Im clenching and bracing out of fear of pain.

I Have seen some minimal improvements tho, and am thankful for that! It varies.

Thanks also to all who had laxative advice!
I will keep all hints in mind and see what helps.
I found a gastro doc who recently put me on a plan of sennakot (several) at bedtime and 1 dulcolax suppository daily .. done at same time each day (relatively) with the goal of having one regular BM daily. Eventually the plan is to ween off..etc. It makes sense.
Since my pain issue is in the anal area, I was reluctant to use suppositories there daily (could irritate the nerve??_ but my docs believe its a good idea and necessary.. so that the PN will not constantly be annoyed from constipation vs diarrhea etc.

When pain levels go up or( down even ) its always a question... "What did I do differently?".... sometimes no rhyme or reason.
I have also dropped down very low on my oral pain med but still need it.
I have a pain pump, but my doc had started me on a extremely low dose of meds,so Im still not yet at a therapuetic dose for pain relief ... but have seen some very slight improvement.
It takes a lot of tweaking and changes to get the mix and dosages right, so it can be a long drawn out process, which requires much patience. Its a very long haul!
I will post again in the future.
Thx again to all who replied
and Merry Christmas to all!
Kathy

After having quite good 2 month I am struggling again last few days.Tommorow I have my PT session so I hope that things will ho more easy next few days. The main killer is the burning pain in groin, base of penis and scrotum, this drives me crazy, I am almost sure that dorsal part of my pudendal nerve is highly irritated and it is difficult to find stretches which would adress this delicate area. But sometimes I got the feeling that groin stretches which are being made by my PT are even more profitable than internal work with pelvic muscles.

Hi Beverely.
Hope you are doing well. I just happened to again notice your post about the PT you saw who pressed on trigger pts at areas 10 and 2 and it helped with urinary issues.
I just re-started PT locally recently, but then heard that Beyond Basics has some ideas they want to try on me.
So I may be getting that set up in near future..
I wonder if you'd mind giving me the name of the PT you used that helped your urinary issues..
Maybe Ive gone to them as well...

If you'd feel more comfortable you are welcome to PM me.
How are you doing with your pain issues in general. I hope well

Thx for any info
Kathy

Thank you Bobby!
These stretchings with exercises http://www.bjui.org/ContentFullItem.aspx?id=838 (appendix 2) have helped me till now (I do them 4-5 days).
I think my problems begun from saddle after I fell in some puddles with my bike..

Thx for the link with all info and stretches!
Lot of good info.

One thing I noticed was that their study:( which resulted in folks with assumed muscular skelatal causes for their PN, having improvement after the PT and stretching exercises .

However their study excluded people like me, who also have urological complaints, yet the participants improvement also resulted in less problems with urination and bowel movements.

i have seen various PTs over the years (even visited Prendergast and Rummer in San Fran for a brief stay)
and no one ever mentioned that having bladder issues would rule out the muscular component as causal. In fact the recommendation I had from the IC Assoc was to get pelvic floor PT asa[ which I did ...(I am pretty certain I have pelvic floor dysfunction as docs have agreed)

But PT never brought lasting improvement,
A noted PT in NYC thinks she can help with my anal pain, if i allow her to be a bit more aggressive with the internal work. I had seen her in 2012-2013 but was fearful of increased pain, as my pain mgmnt is not great, so she was gentle then.
My problem is logistics as I rely on hubby to drive into NY City (long traffic filled schlep with no guarantee that PT will help or how long it will take!). He is not keen on that after several years of driving to docs etc.

So who knows?

Does anyone have any opinions on the above issues ...stretches for issues which include bladder urge/hesitancy, severe anal pain (can't sit) and now varying bowel issues from the darn meds I take..(only)
My local PT- here in NJ (who has just met me) has given me very gentle hip stretches on right for severe tightness she notes on that side...my painful side.
Thx!

What happened to the original poster, Bobby? He seems to have absconded after facing some very hostile responses here. I thought he expressed himself rather well, and his story parallels many, many men who post at my website.

I've joined this forum because quite a few of my members are confused about PNE and CP/CPPS/IC. My guess is that there are likewise many such posters here who are equally confused. Perhaps my input, occasional as it perforce must be due to time constraints, would be welcome? I'm quite knowledgeable about these issues and I could impart some of that knowledge. All I ask is that the moderators here tone down the personal attacks and accusations.

I've noticed that there are a few fraught threads here mentioning various therapists in very unflattering terms, and there doesn't seem to be anyone here to put the alternate case. I may be able to help in that sphere too.

CPPS admin, I read through this thread and I do not see any personal attacks or hostile responses. Could you please be specific about what you are referring to? If you see something that is a personal attack, please quote it or link to is so we know what you are talking about, rather than making generalizations.

Thanks,

Violet M/Mod3