Do I have Pudendal Neuralgia or Levator Ani

[tummydepressed]

Hello all. I have just found this website - what a resource it is! I would be very grateful for any feedback you can all give me.

All my life I have had problems with bowel motions (as long as I can remember). No matter how desperately I needed to go, it would always take me a long time to feel empty... 30-40 minutes.

I coped with this. As I only needed to go once a day. But over the last 18 months things have worsened drastically. I now need to go 3-4 times a day and am spending half my life in the bathroom. I never feel empty and I have pain in many regions:

- Inside rectum, (the classic sitting on a ball)
- Perineum
- Penis. A particular problem now is frequent urination. I am always going.
- Most recently my legs ache! The pain radiates downwards

I always get weird erections as well. When I am not aroused and it just feels weird and a bit 'numb'....

I am seeing a specialist hospital in North London and undergoing bio-feedback. I have been diagnosed with pelvic floor dysfunction, or levator ani, but not sure if this is correct. I feel I need a more precise diagnosis so I can adjust my life accordingly.

My main concern is my love for running. I have been a long distance jogger for several years... this isn't the cause of my problem as I have been ill from my youth, but if it complicates things I may have to give it up. I was working out in the gym at around the time things got worse as well......

The weird thing is, the only time I really feel OK is after exercise, no doubt cause of the endorphins. Perhaps the negative effects are not felt straight away?

Any thoughts would be brilliant.

J

[JeanieC]

Hello and welcome to the forum, J


Sorry to say your symptoms sound a lot like the ones we read about and experience here. The good news is that you have come to the right place to get help and information, and as well, you live in London where there are PN specialists. I am not sure if their names have been added to the doctor list on the website or not, but Dr Carlstedt is one name I can remember reading. Look for posts by johndh as he knows the procedure for making appointments to see the London PN doctors. Also there are many posts on the forum from other UK residents. Calluna and Peaches are two of them.

I would like to suggest that you limit, or give up your rigorous exercise program until you find out if you have PN. As you say, you will then be able to adjust your life accordingly. As far as continuing the biofeedback, it cannot do you any harm, but it will not help you if you do have PN, so a few sessions of that would be sufficient to learn it.

Best wishes, Jeanie

[Violet M]

Welcome J. Haven't heard of jogging causing pudendal neuralgia but working out could -- I'm assuming you left weights? If your pain is due to a problem in the spine from some type of nerve root impingement or degeneration I can see how jogging could cause problems but you are very young to experience any type of degeneration.

If you've had to strain a lot due to difficulty with BM's that could cause pudendal nerve damage so it's very important not to have to strain which means you might need to use something like miralax or magnesium citrate to help out with the BM's.

[tummydepressed]

Thankyou, I am very grateful. I will certainly look up that doctor. What harm can it do!!

BM's have always been the hardest part of my illness. For years. I am 37 now, but since I can remember my BM's have been like this, (sorry to be graphic)...

- Have the urge, so visit bathroom
- Have some initial 'movement'
- Strain for a while
- Suddenly, often not through straining, it is as if something will 'clear' and I will pass more stool
- Repeat above until I have some semblance of feeling finished!

This process can take 30-40 minutes. Does this sound fairly typical of PN?

Over the last 18 months or so the other aspects have kicked in. Particularly the frequent urination.

If I do have PN, do you think I can recover sufficiently to have some 'normal' kind of life? What are your experiences?

I particularly miss feeling sexual. It is kind of hard to feel in the mood when you literally have a pain in the butt, often the abdomen and always want to urinate!!

[Violet M]

Yes J, people with PN often have a history of straining with BM's and difficulty passing stool. The constant or frequent urge to urinate is also typical.

Yes, it's possible to get back a normal life but you may have to make some lifestyle changes and seek some treatment. I live a pretty normal mostly pain-free life now but I have to take magnesium citrate regularly or I get into problems with BM's again. I take tablets that I get at a health food store -- 400 mg twice a day but some people prefer miralax. The goal is to keep your stools the consistency of applesauce -- at least this is what I've heard from a physician ( not that physician's are always right ) but it works for me.

[calluna]

Hi J - here in the UK, if you are going through the NHS (as I am) then if you wish to see a particular specialist, you should see your GP and ask for a referral, she will know the procedure. I would also advise going to see your GP first if you are going privately.

In the UK there are two teams specialising in PN - in London there is Dr Andrew Baronowski who does the nerve blocks and diagnostics, working with him is Professor Carlstedt who does surgery if Dr Baronowski feels it is appropriate. So Dr Baronowski would be your first contact. The other team is based in Bristol - Dr Gareth Greenslade does nerve blocks etc, and Drs Wong and Patel do the surgery if appropriate.

But I would just ask - before you go the PN route, have you had a colorectal referral, to rule out any physical problems there? If not, this would be something to discuss with your GP.

And I would echo what VioletM says, it is important to avoid straining, you can do damage that way - could this be the cause of your problem I wonder? Rather than jogging?

Here in the UK, Miralax is sold under the name Movicol. If you haven't tried it, it is different from other laxatives. It can safely be used long term - it is much used in stroke wards, for instance. I found that the nurse practitioner based at my GP surgery was very helpful in this repect. There are doses given on the packet, but circumstances vary - and so can the maximum dose, with medical supervision.

I hope that you are able to find some help.

[tummydepressed]

Thank you so much for that excellent information.

Yes, I have had colorectal referall. Extensive texts such as transit studies, proctoscopy and colonoscopy have ruled out cancer/fissures etc....

The end diagnosis was pelvic floor dysfunction or levator ani syndrome, for which I travel to London for bio-feedback treatment. This involves massaging pressure points inside my rectum and training me on how to 'push' appropriately.

In all honestly, though, the diagnosis doesn't cover the frequent urination and weird arousal and pains in my leg.......... I often feel worse afterwards. Perhaps the stimulation is aggravating the pudendal nerve damage......

I honestly dont feel jogging was the cause. Maybe weight-lifting. Most likely, however, excessive straining over the years.

The problem is, why did I have to strain all those years? Maybe I had levator ani that in turn caused Pudendal Nerve Damage.

I do remember straining hard a few times and then feeling a popping/a bursting sensation inside the back wall of my back passage. I guess a few cm up inside....

At the moment, that is where the worst pain is. In the back wall of my rectum. I dont like sitting in my car. It feels like I am cut. If I have a hard bm that pain gets worse.

I understand the apple sauce argument. Those stools are far easier, if a bit messy. I have tried Movicol, but shyed away from it. My logic at the time was that it made me go more often so wasn't desirable. However, if it makes it easier it is the long term solution.

Thanks again. This help is really lifting my spirits.

[tummydepressed]

As a quick aside... do you guys recommend anything for the pain? Aspirin or something?

[calluna]

With regard to the pain - the thing that often gives the best help is something very simple - ice. Please don't think I am being dismissive saying this, it really does help. An ice pack ideally, I have a gel pack from my chiropractor which is kept in the freezer, but failing that a pack of frozen peas is good. Wrap it in something, an old teatowel maybe, and put it where it hurts - 10 minutes in each hour at the most.

Other than that, you need to talk to your doctor. If this is neuropathic pain, then it does not respond to 'normal' painkillers.

[tummydepressed]

I see - thanks Calluna. Don't think you are being dismissive at all.

The only problem is, the worst pain I get isn't at 'surface' level. Whilst my perineum hurts sometimes, it is nothing to the pain compared 'inside' my rectum, on the back wall a few cm up. It is not actually even on the rectum wall, more inside the tissue there, slightly to the right.

Is this a pain often found with PN or PNE? j