Health Organization for Pudendal Education

Hi guys

I'm coming here at the end of 7 years of problems.

BACKGROUND

This all seemed to start with a football injury at 14. I got a back injury which threw my back out of alignment and was uncorrected. Over the years the resulting muscles spasm twisted my lower spine. Add flat feet, tight hamstrings and this all added to my pelvis being distorted.

PUDENDAL SYMPTOMS

It started with tension and pain in the anal region at the age of 27. I kept getting anal fissures and having spasms. After a year or so I stopped getting strong erections. This persisted for about 5 years until eventually I had surgery to remove 2 skin tags. After the surgery I developed back pain, bowel problems and bladder problems. Soon I also got pains running through my testicles. After many rounds of antibiotics I was diagnosed with Prostatitis. This went on for about 12 months and seemed to improve gradually but my back pain was getting worse.

Eventually my lumbar spine seized up and I could no longer sit. I had an extremely irritable bladder too. I was diagnosed with a bulging disk at L5S1. This is despite not have clear compression on an MRI. I had three epidurals which did help my symptoms but after six months my back had not improved properly. As the last epidural wore off I was in extreme pain and on heavy doses of Tramadol.

I suspected Pudendal Neuralgia so I went to see Dr Baranowski. He said my back pain was due to a heightened nervous system as he could see nothing definitive on my MRI. He indicated my sacral nerve pain may be from the pirimorfis muscle. I was sent for pain counselling but this just made me fall into depression. I needed a diagnosis not coping mechanisms.

At the last resort I went to a Chiropractor. He did a standing x-ray which revealed leg length discrepancy, a misaligned sacrum and a twisted lower spine. I also had severe facet joint syndrome at L5S1. After one twist of my spine I got full erections back. Soon my bladder calmed down. Even anal pain seemed to be decreasing.

As I was looking to move up to London I visited another chiropractor he recommended in Putney. Massive mistake. She did one adjustment and my back seized up at L5S1 and I got Terrible anal pain. 3 months on and it is still burning. It seems to flare up with bowel movements and then gradually calm down again. I got bladder problems and pain in the anal region. I don't tend to get numbness. Just burning pain and muscle/sphincter spasm.

I really am struggling to think my way out of this problem as it so emotional and I'm very tired from all the stress and research.

I have a few questions for experienced members if that's ok.

1. Should I got an MRN at Medtel?
2. If I do have Pirimorfis syndrome is there someone which specialises in relieving it? I live in Kent, UK?
3. I've been to Dr Baranowski and would see him again but am concerned he got my back diagnosis wrong. He may be right about the piramorfis irritation. Is there anyone better I should see?
4. My back pain is at L5S1. I've read that sometimes the pudendal nerve comes off S1 instead of S2 and S3. Has anyone experienced that?

Thanks for your time.

Bloody horrible isn't it!

Rich

Please help

You might want to look under the UK part of the forum and maybe contact some of the members based in your area for who to see.

It seems your lower back and leg length descrepancy are playing a role in your pain since you did get some relief from the first chiropractor. Have you thought about looking around for another chiropractor since the last one made you worse? I know it took me a while to find a chiropractor here in the states that can treat me. She is extremely gentle and it makes a world of difference in my piriformis syndrome when my hips are kept in alignment.

You might want to look through some of the threads on piriformis syndrome as there are many suggestions as far as self treatment options such as exercises, stretches, TENS unit, heat, etc. Youtube has some good videos on stretches for the piriformis. Just make sure with your back that you can do these types of exercises or stretches.

Have you tried a massage therapist for you butt and lower back. I found a great massage therapist who works weekly on my piriformis muscle in addition to some other muscles problems I have in my legs. You might find having someone work on those tight muscles helps alot.

You could try contacting Jerry Hesch at the Hesch Institute to see if he knows anyone in the UK trained to use his method of manual therapy. http://heschinstitute.org/

Since you had temporary relief once, it sounds like your problem must be a mechanical one and if it was adjusted properly once, could be adjusted properly again. Read some of HerMajesty's posts. She has not been active on the forum recently but used to work with Jerry Hesch and achieved significant pain relief from only a few adjustments from him.

We had one former member whose PN-type pain originated from the L5/S1 area rather than S2 so -- I guess it can happen.

Have you had an MRI of the lumbosacral plexus (underneath the piriformis)? You could try contacting Dr. Marc Possover (listed under the European Physicians) who performs neurolysis of the nerve higher up than most of the PNE physicians and could probably access the area under the piriformis if that is the source of your pain. But it seems like if you can avoid surgery with some type of manual therapy that would be ideal.

Not sure what's going on with you but I'm just brainstorming on some possible options.

Hi Richie - I too am in the UK.

I'm just wondering if it might not be an idea to go back and see Dr B again, as things seem to have altered a bit since you saw him. Piriformis problems are not something that I know much about myself so I will not attempt to answer your questions - someone that you might want to contact is helenlegs 11, she is also in the UK and knows lots about it.

Also, it might be an idea to ask your GP if he could refer you to your local Pain Clinic - you are right that they don't usually do diagnostic work, but they are very good at sorting out the best way to relieve pain (TENS, medication, acupuncture) and until someone sorts out what's actually happening with you, that's something that would make life easier, at least.