Health Organization for Pudendal Education

Hi all. Sorry I haven't posted for a while and not answered some of your replies; things have been rather hectic. I have also been getting a lot of hospital assistance. As you may remember, I experience many PNE related symptoms.

Whilst I get some urinary problems, my major difficulty has always been pain in the rectum and the inability to evacuate. I spend 40 minutes in the bathroom, 3 times a day. I have undergone bio feedback and it has been determined that my pelvic floor is way too tight. Treatment worked a little, but they couldn't loosen it up, so they wanted to check for physical deformities.

So I went for something called a defecating proctogram. They injected some barium paste into my rectum and then filmed me as I evacuated it.

The results were really amazing and I have seen them on screen. The specialist was shocked by what she saw. Basically, my rectum is extremely high up in my body, so high it is pulling my whole area up, making it very tight and difficult to push stool through an extremely narrow anal canal. Apparently my levator ani muscle is under a lot of strain, hence the pain.

The specialist says the issue is a long standing one, but that I have done this to myself. For some reason, I have taught myself to hold my pelvic floor up and in. Maybe because I have an issue with defecation, or because I am anxious...... The key now is to get it back down, but reversing 30 years of behaviour won't be easy.

I wanted to ask if this meant my problems can still be classified as PNE, and if the same treatments etc. could therefore work?

One major issue I have is that in my job I sit down 8 hours a day, so is this making me worse? My problems have certainly intensified since being in this job......

I have to say that seeing my pelvic floor in action was something of a relief. It is a sort of answer. The only problem is that solving things will not be easy, or maybe even possible!

What are they recommending as a treatment for you? If the tight pelvic floor is due to PNE then yes, sitting could be a problem. Does sitting seem to increase your pain?

Heya... thanks for the reply Violet.....

The specialists say it isn't due to PNE. They believe I have been subconsciously holding my pelvic floor up and in for many years.

They say it will be hard to get it back down after years/decades of this behaviour. To attempt it, I have stretches, bio feedback and they want me to self irrigate to stop all the straining....

So, do you trust these specialists -- do you feel like they know enough about PNE to definitively rule it out in your case?
Do you feel like "you've done this to yourself and that it's subconscious tensing of the pelvic floor, etc.?" If you are comfortable with that diagnosis then maybe the biofeedback and stretching will work for you.

With many PNE patients, the irritated nerve is what's causing the pelvic floor to be tight -- not subconscious holding in of the pelvic floor. I've been down the biofeedback/stretching route and stretching is what pushed me over the edge into full blown PNE because the nerve was compressed between 2 ligaments and stretching just injured it further. So, please be careful and if you aren't comfortable with your diagnosis, seek a second opinion from some of the PNE providers listed on this website.

Take care,

Violet

That is really interesting. Am I comfortable with the diagnosis? I don't know.

The only concrete thing I have is a picture I have seen of my anatomy in side profile. I had barium inside me and it shows my rectum as being incredibly high.....

Could damage make it this high? I just don't know what would have damaged me, because I have always been like this. My earliest memories are soiling myself at school continually over a period of 6 months when I was about 4. Conceivably that could have affected me and I have been holding in ever since.

I would like to think my specialists know what they are talking about. They are from St Marks Hospital in London and are apparently the leading experts in the bowel arena.

I do have a slight concern, because when I mentioned PNE it was sort of dismissed and I was asked 'well how could you have damaged it'. They seem to think only women suffered and it was largely caused through childbirth..... (I am male!)

Often PNE occurs alongside other problems. Maybe one of the PNE experts could shed some light on whether you have PN involvement. Too bad you don't have an image of where your rectum was before all of this started so you could have some sort of reference point as to what is normal for you.

Please keep us posted on your progress with treatment -- I hope you will have success with it.

Violet M