Health Organization for Pudendal Education

Marcus,

The UK section of this forum would have the name of some docs that deal with PE. What about scheduling an appt with one of them? It may involve some traveling but we are all having to do that. It's so inconvenient to fly here and there and everywhere to get answers.

hugs,
cari

Marcus,

I also had fissures and 2 anal spinchterotomy's in 1999. I needed 2 because the first did not work. After surgery the spasms stopped, however anal pain/redness continued.

I saw a proctologist who diagnosed me with Anusitis.. He recommended Anurex. This is a plastic tube that is inserted into the anus for 8 minutes. The Anurex is stored in the freezer to keep it cold, this aids in decreasing inflammation and pain.
Anurex has helped greatly and I use as needed(flare ups).

I also have pne and can not sit. The past 11 years has been challenging to say the least.

What keeps me going is my family and friends. No one I knew could fully understand my pain so I found this sight 3weeks ago and find it very helpful to talk to people with similar medical situations.

Remember you are not alone and new medical advances come about all the time. I continue to be hopeful that things will improve. This is a very resourceful sight.

Gail

Thank you to all who responded, and Gail I will check out anurex so thanks for that. I got through last night, trying to live hour by hour at moment and reminding myself of the impact me not being around will have on my children. They really are the sweetest things.
The worst days are when I wake up in morning with some pain, on good days pain pain comes mainly after bm and gets worse. Today I know isn't going to be great but if I could get through last night am telling self can get through any. I am not one for dramatising how I feel, what I say is how it is so when I say the people who responded last night saved my life I mean it. They maybe many more days & nights when I have these thoughts, but pleased I found this site.

Hi Marcus, I live in the UK and also see DR Greenslade too.
I honestly think that we are just finding out bit by bit new information about PN. It may be that you are entrapped after Alcocks canal, perhaps at one of the branches of the nerve , especially with the surgery you have undergone.
It is a fairly recent discovery that someone can actually be trapped that low down the path of the nerve and I don't know of anyone in this country who would be able to offer surgery to address that part of the nerve here either. The only surgeons here do the TG approach as far as I'm aware which wouldn't access the area lower down after Alcocks.
Glad you have your lovely family to give you a boost and hope for the future, hang on to that. Now you have found us too and everyone here will do anything in our power to help you.
Take care
Helen

Hi Marcus,

I have also had fissures and 2 anal sphinctorotomys. The first surgery did not work, but the second did . The spasms had stopped but I continued with anal burning and inflammation.

I saw a Proctologist and he diagnosed me with Anusitis and recommended that I use Anurex. Anurex is a plastic tube that is inserted in the rectum for 8minutes. The Anurex is kept in the freezer the coldness (cryotherapy)brings down pain and inflammation. You can buy Anurex at most pharmacies. I use as needed, and the pain/ inflammation is much improved.

I also have had pne for 11years and can not sit in any capacity,and the challenges are great. I found this support group about 3 weeks ago and no longer feel alone with my medical condition. Thank God for family and friends.

I keep up my hope by believing new medical advances come up every year and a cure will be found. This site is -also very resourceful on current treatment , surgery etc...

Gail

Marcus, it's possible to have only rectal pain and have pudendal neuralgia because the inferior rectal branch can be irritated without the other branches being affected. Since Dr. Greenslade thinks you don't have PNE maybe you could start out with some pelvic floor physiotherapy that includes myofascial release along with some muscle relaxers or valium rectal suppositories to see if that calms down the pelvic floor muscles. I'm not a huge believer in endless physiotherapy though -- most people know after several sessions if it's helping or not. If it causes major flare-ups, then you have to start thinking it's the nerve that's the problem. I think Gail's idea of the rectal steroid could also be a good one to try.

So, are you saying there was absolutely no pain whatsoever on your rectal exam by Dr. Greenslade? I am wondering how that corresponds to the pelvic floor muscles being in spasm. Sometimes the pain is diffuse enough that it's difficult to tell the nerve pain apart from muscular pain.

OK, this would be my question to the colo expert who thinks hypersensitivity. What's causing the hypersensitivity? Hypersensitivity is not a diagnosis -- something is causing it and the goal is to figure out what. And this would be my question to Dr. Greenslade -- what's causing the tight pelvic floor muscles? You may have heard the chicken and the egg question which is the million dollar question around here ---- Which came first....the muscles in spasm impinging on the nerve and causing pain, or an entrapped irritated nerve causing the muscles to go into spasm?

Here's another one that you can put in the For Pudendal column: waking up feeling OK and a BM flaring things up with the rest of the day getting progressively worse. That's very typical for PN. It's really important not to allow yourself to get constipated. We've discussed tons of remedies for this on the forum and if that seems to be a problem for you there will be no shortage of advice here. We're all worse when stressed so that could go in either column. Many of us have urinary frequency and if Botox helped, it could be because the muscles were calmed down temporarily but it doesn't mean that it's not an irritated nerve that's causing the muscles to go into spasm in the first place. Just my 2 cents but I could be wrong of course.

Take care,

Violet