Can PNE complications be predominantly bowel related?

[tummydepressed]

Hello all. Posted a few times a while back and have been lurking ever since. From everything I have read and learnt I think it is pretty certain that I have PNE.

I wanted to ask, however, if anybody suffered mainly from bowel related issues with the other problems being a lesser issue. Also, does anybody feel there can be a psychological element?

All my life, it has taken me 20-30 minutes to have a bowel motion and then I don't feel empty. Post bowel movement pain always occurs. The severity of my difficulties have increased with age. I now have problems with urination and the rectal pain I have always had has intensified. The only time I feel OK is first thing in the morning.

Is it common for things to occur this way round.......? I now feel permanently like I am constipated. My stools are generally small and hard and I generally feel blocked... often I will pass only a few stools... sometimes a blockage seems to clear and the BM will be very very heavy - passing lots of small stool.....its like I wont stop.

I am undertaking bio-feedback in London, which includes pelvic floor massage. My specialist, however, feels my problems are somewhat psychological. Apparently my internal muscles are extremely 'tight' so nothing passes freely.... They think the key is for me to relax. But I have always been like this.....

Any feedback would be appreciated......

J

[Violet M]

Hi J,

Used to have severe constipation like you, but taking a daily laxative has done wonders for me. I like magnesium citrate but miralax (I think it's movical in the UK) is also a good one from what other people have said. I've heard you aren't supposed to take laxatives on a regular basis but I've been using one for 5 years with no problems at all. So far I've seen no drawbacks and only positives. If you are really backed up, you may have to get good and cleaned out first and then start a daily regimen of laxatives. I have to respectfully disagree with your specialist about it being psychological.

I think that constipation can contribute to pudendal neuropathy because straining can nerve damage but I wouldn't say constipation was my primary problem with PNE -- it was just one of the problems.

[janetm2]

Hi j,
I was constipated most my life and started having sitting pain that was in that area so I was kinda surprised that it turned out I had PNE and that was being treated by a gynecologist because it is the pelvic nerve. I never even spoke to my regular gynecologist until I was gathering info for my first appointment with Dr. Marvel and then after diagnosis I handed out a 1sheet description to all the doctors I had been seeing so maybe they can send other patients somewhere for help sooner than it has taken the rest of us. Also the constipation probably was not the problem or itbwould have started earlier. The issue was that I spend an inordinate amount of time sitting because I chronic foot pain and that allowed me to work, shop at the mall, vacation, cook, etc. Yhe kicker was last year when I sat on a hard chair in pain and did not get up and everything started to hurt.
Keep plugging away at the doctors or see if you can get to one on this site to get the help you deserve. Take Care,
Janet

[tummydepressed]

Thanks guys... your feedback is really interesting... Putting the pieces together, I wonder if this has happened......

I had a PNE issue from a young age.... predominantly related to constipation. Over the years, through all the straining, I have increased the damage to the extent where I now have all of the issues related to PNE, (including urinary and sexual dysfunction, rectal pain, numbness...)

Would that seem to make sense? I know also definitely have dietary issues, maybe I have given myself IC.......

Thanks again....

[calluna]

Hi J - constipation can definitely make the pain of PN much worse, unfortunately I think that many of us are familiar with this. Becoming constipated is a bad idea if you have PN problems. If the bowel is over-full it can become distended and press on the nerve, add some straining into the situation and you pretty much have a recipe for irritating the pudendal nerve.

I very much agree with what Violet says regarding the use of a laxative. Here in the UK the one you want is called Movicol, you can buy it over the counter. It is not the same as Fibogel, don't take that unless you are only mildly constipated, it can make things worse if you are quite blocked.

Movicol is safe for long term use, it is much used on stroke wards - and if you think about that, you will see how effective it is. You may indeed need to get 'cleaned out' - for faecal impaction you can take 8 or 12 a day if necessary, but please only do this under medical supervision. I found the nurse practitioner at my GP surgery to be extremely helpful and supportive with her advice, more so than the doctors - who I suppose deal with this sort of thing rather less than the nurses do.

With regard to a psychological element - well, it is easy to argue in favour of that one, and hard to dispute it. And what a nice 'get out' phrase for a physician to use, when things aren't going to plan! But I don't think you should worry unduly about it. Although we do have expectations of how our body is going to behave - and I'm sure you've heard this one before - whether you think you will, or you think you won't, you are probably right - I do believe that it is important not to over-think things. In this situation, if you try to keep an open mind, you will know that you've done the best that you possibly can, and nobody can ask more than that.

[tummydepressed]

Thanks guys.... I don't think I need to be 'cleaned' out.

I don't think I am constipated in the traditional sense. I think I generally pass as much stool as is needed over the course of a day, it is just that it takes me 3-4 attempts across the day to do so, (each attempt taking 30-40 minutes).

I just feel like my bowel doesn't function correctly..... Like it is the wrong shape, or twisted or constricted... my specialists say it is too tight. After my first 2-3 attempts I don't feel empty and often feel like there is stool 'trapped' somewhere, or squashed against insides that seem to have twisted or closed up. It can painful until I manage to pass more stool later in the day, (which can take on all kinds of shapes). Diet has a role as well... so I think I may have developed IC.

Food passes through me quickly - I have had transit tests - but getting it out is a difficult and painful protest. I have tried not to force it and going less, but that just leads to it becoming harder further down the line.

This may all be easier if the stool was softer. I will definitely try Movicol.

If I am being honest, I just don't really know if I have PNE because nobody else seems to have the same problems. Although now, my other symptoms definitely fit.

[calluna]

Could I just ask, what is IC? I thought this was Interstital Cystitis, but this doesn't seem to fit with what you are describing.

[tummydepressed]

Heya - yes Interstital Cystitis.

I have been told it can affect your colon as well - this can become inflamed etc. in a similar way to the bladder. Since I was told that it sort of offered some explanation as to the stomach/abdomen pain I experience after straining for a BM. Do you think I am way off the mark?

[seawalker]

I have the EXACT same bowel trouble as you do. It is misery I know. I also have urinary retention. I think it is tight pelvic floor muscles, and a paradoxical contraction of the puborectalis. I take miralax and senna, and eat probiotic yogart every night. Do what ever it takes to get your stool soft and out the door. Dont forget to drink 2-3 liters of water a day too.

I recently read in a medical journal studying people with IBS-C that rectal distension triggers the part of the brain responsible for anxiety.The nerve networks are very complex in the bowel.

The IC can all tied in with your tight pelvic floor muscles. If there is any physiological component, it is that you may have developed a habit of tensing your pelvic floor muscles a long time ago for some reason. A possibility. May be stress or a "protective habit" picked up at some point. To me, having stool stuck in the rectum after a bowel movement makes me tighten things up.

[tummydepressed]

That is really interesting seawalker......

When I was very young - around 7 or 8 - I used to soil myself at school continually. I had blocked bowel problems. Perhaps I became anxious and so worried about things that I picked up the protective habit from there. I certainly don't remember being normal.

But that leads me to ask where this ties is in with PNE... If it is over tight pelvic muscles, as it seems to be, is it all psychological?

Can I also ask a couple of other questions. Firstly, what role does diet play in your symptoms? Secondly - and sorry to be graphic - but do you get bits of stool that are sticky and get stuck, so wiping takes for ever. So much so that I now just shower every time. It is like I am struggling to push the last bits out, but they are some kind of micro stool that I cannot shift........